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ATTENDING TO AMERICA 
PERSONAL ASSISTANCE FOR INDEPENDENT LIVING 

 

Report Of 
THE NATIONAL SURVEY 
OF ATTENDANT SERVICES PROGRAMS 
IN THE UNITED STATES 

World Institute on Disability 
April 1987 


WORLD INSTITUTE ON DISABILITY 
Board of Directors 

Philip R. Lee, M.D. Professor of Social Medicine and 

(Chair) Director, Institute for Health 
Policy Studies, University of 
California, San Francisco 

Jerome Tobis, M.D. Professor of Rehabilitation 
Medicine, University of California, 
Irvine 

Ann Eliaser Compass Associates, 
San Francisco 

Robert F. Kerley Vice Chancellor Emeritus, 
University of California, Berkeley 

Irving Kenneth Zola, Ph.D. Professor of Sociology, Brandeis 
University, Waltham, Massachusetts 

Russell E. O'Connell Administrator, The American Short-
Term Therapy Center, New York 

Norman Acton President, Acton International, 
Miles, Virginia 

Bruce Alan Kiernan Director of Development, Federation 
of Protestant Welfare Agencies, 
New York 

Andrew McGuire Executive Director, The Trauma 
Foundation, San Francisco General 
Hospital, San Francisco 

Charles La Follette Executive Vice President, United 
States Leasing International, Inc. 
San Francisco 

Edward V. Roberts President, World Institute on 
Disability 

Judith E. Heumann, M.P.H. Co-Director, World Institute on 
Disability 

Joan Leon Co-Director, World Institute on 
(Secretary-Treasurer) Disability 


ATTENDING TO AMERICA: 
PERSONAL ASSISTANCE FOR INDEPENDENT LIVING 


A SURVEY OF ATTENDANT SERVICE PROGRAMS IN THE UNITED STATES 
FOR PEOPLE OF ALL AGES WITH DISABILITIES 


Simi Litvak, Ph.D., O.T.R. 
Hale Zukas 
Judith E. Neumann, M.P.H. 


Preface by 
Irving Kenneth Zola, Ph.D. 


Project Contributors: Project Director: 
Curtis "Kitty" Cone Joan Leon 
Nancy Ferreyra 
Marian Conning 
Ed Roberts 


Principal Investigator: 
Simi Litvak 


WORLD INSTITUTE ON DISABILITY 
1720 OREGON STREET 
BERKELEY, CALIFORNIA 94703 
(415)486-8314 
APRIL 1987 



Attending to America: 
Personal Assistance for Independent Living 
Simi Litvak, Ph.D., O.T.R. 
Hale Zukas 
Judith E. Heumann, M.P.H. 
Published by World Institute on Disability 
Berkeley, California 
Library of Congress Catalog Card Number: 87-50213 
ISBN 0-942799-00-3 




ii

ACKNOWLEDGMENTS 


This report has been funded by The Charles Stewart Mott 
Foundation, The San Francisco Foundation, The Wells Fargo 
Foundation of San Francisco and The Easter Seal Research 
Foundation. We thank these organizations for their support. 

Several months before publication, a draft of this report 
was presented to a critical audience of knowledgeable 
individuals. The invaluable philosophical, methodological, 
technical and editorial advice offered by the following people as 
a result was greatly appreciated: Philip R. Lee, M.D., Chair of 
WID's Board of Directors; Russell E. O'Connell, Jerome Tobis, 
M.D., and Irving Kenneth Zola, Ph.D., members of WID's Board; 
Elizabeth Boggs, Ph.D., Gerben DeJong, Ph.D., Fred Fay, Ph.D.*, 
Lex Frieden, Ph.D.*, Emma Gunterman, Gini Laurie, Margaret Nosek, 
Ph.D.*, Adolf Ratzka, Ph.D.*, Laura Rauscher*, Helga Roth, Ph.D., 
Max Starkloff*, Susan Stoddard, Ph.D., Juanita Wood, Ph.D., and 
Phyllis Zlotnick*, members of WID's Attendant Services Advisory
Committee. 


Special recognition must be given to the following WID staff 
members who made this project successful: Curtis "Kitty" Cone, 
who did the initial planning of the questionnaire and conducted 
part of the interviewing; Nancy Ferreyra, who conducted 
interviews, prepared the bibliography, assisted in data analysis, 
and answered correspondence and information requests; Hale Zukas, 
who was engaged in planning, editing and policy development at 
all stages of the project; Sandy Swan, who lent her computer and 
research skills and common sense; Marian Conning, who typed all 
the versions of the report, kept track of funds, offered sound 
suggestions and generally held down the fort; Helga Roth, who 
cheered us on and helped with editing; Joan Leon, who wrote the 
original proposal for the project and directed it through all its 
various stages; Mary Lester, who prepared the graphs; and Judy 
Heumann and Ed Roberts, who provided the ideological/philosophical 
overview for the project and the report. In addition, we 
would like to thank Carol Silverman, Ph.D., Instructor in 
Sociology at the University of California, Berkeley, who all but 
donated her research and computer skills to this project. 


Simi Litvak 
Berkeley, California 
January, 1987 


* Individuals who use personal assistance services 

iii 
PREFACE 
By Irving Kenneth Zola, Ph.D., 
Department of Sociology, Brandeis University 


Independence and self-reliance are strongly held American 
values. They are the key to any claim that we are a truly open 
society. For it is reasoned that if anyone would only try hard 
enough, s/he could eventually succeed -- the Horatio Alger myth. 
That such concepts have also crept into our rehabilitation 
literature should be no surprise. Thus traditional stories of 
successful rehabilitation continually stress the individual's 
ability to overcome his/her particular chronic disease or 
disability. In turn, individual qualities like courage, virtue, 
stick-to-it-ness, and the desire to "go it alone" were the very 
praiseworthy personal characteristics; and high scores on such 
scales as The Adaptation in Daily Living (ADL) (which measured 
the individual's ability to do many personal care activities by 
him/ herself) were the behavioral ones. 


The founders of the Independent Living Movement were very 
different sorts of people. Their scores on the ADL scales were 
near the bottom and they were people on whom traditional 
providers of care had given up -- people for whom not only a 
productive life but even a meaningful one was deemed impossible. 
Neither they nor their families accepted the judgments of experts 
and in their struggle and their answer the Independent Living 
Movement was born. Their stories of success are different. 
Without negating the importance of personal qualities and the 



iv 
improvement of one's functional abilities, they emphasized the 
necessity of removing architectural barriers, changing societal 
attitudes, and using help whenever and wherever they could get 
it. 


In all the years I've heard Ed Roberts speak (To those who 
don't know him, he's one of those "rejects" mentioned above -- a 
man, post-polio, who uses a respirator and a wheelchair and was 
deemed unworthy of California's rehab dollars. He went on to cofound 
The California Center for Independent Living and later the 
World Institute on Disability and in-between became California's 
Commissioner of Rehabilitation and a MacArthur Fellow), before 
beginning, he introduces is personal assistants by name and 
briefly details the latter's role in Ed's being "here." This 
gesture concretizes a cornerstone of the whole Independent Living 
Movement (DeJong, 1983).Independence is not measured by the 
quantity of tasks we can perform without assistance but the 
quality of life we can have with help. People have often gotten 
help from others but it was often given in the context of duty 
and charity (Scotch, 1984). Help in the context of Independent 
Living is instead given within the framework of a civil right and 
a service under the control of the recipient -- where, when, how 
and by whom. 


This cornerstone of the Independent Living Movement has long 
been argued about but little studied. DeJong (1977) surveyed the 
services of one state; DeJong and Wenkler (1983) did a comparison 
of several; and Laurie (1977), a timely national overview. 



V 

Within the last three years DeJong (1984) and Ratzka (1986) have 
provided in-depth descriptions of the progress and promise in the 
Netherlands and Sweden. This current report, prepared by Simi 
Litvak and sponsored by the World Institute on Disability, is a 
much needed American response -- a detailed survey of all the 
United States which gathered data from some 154 attendant service 
programs serving almost a million people Though people with 
physical disabilities were those most often served, the programs 
also included ones serving those with brain injuries, intellectual 
and emotional problems. The 17-page questionnaire measured 
their development, administration, funding sources, and degree of 
conformity to the ideal Independent Living Model. Despite the 
wealth of data, this report is no mere compilation of tables and 
statistics. It is an extraordinarily self-critical document, 
telling the reader what it gathered well, poorly, and not at all. 


It names names and articulates issues. While echoing the need 
for further information, in a series of recommendations it lays 
down the gauntlet of what must be done to make all our citizens 
independent. While documenting the programs already in existence, 
it also describes the underserved and points to the future 
(the ever increasing number of newborns with disabilities as well 
as increasing aging of our population). It is clear that many who 
will read this report will not at present have a disability. But 
if the data on aging and genetics are correct, it is unlikely 
that anyone reading it will not in their lifetime have to face 
the issue for him/herself or in his or her families. 



vi 

But at long last, we now have some baseline data. Personal 
Assistance for Independent Living lays down how far we have come 
and how far we have yet to go. 


REFERENCES 


DeJong, Gerben. (1977). Need for Personal Care Services by 
Severely Physically Disabled Citizens of Massachusetts. 
Personal Care and Disability Study, Report No. 1 and No. 2. 
Waltham, MA: Levinson Policy Institute of Brandeis 
University. 


DeJong, Gerben. (1983). "Defining and Implementing the 
Independent Living Concept" in Nancy Crewe and Irving 
Kenneth Zola (Eds.). Independent Living for Physically 
Disabled People, pp. 4-7. San Francisco: Jossey-Bass. 


DeJong, Gerben. (1984). Independent Living and Disability Policy 


in the Netherlands: Three Models of Residential Care and 
Independent Living. Report No. 7. New York, NY: World 
Rehabilitation Fund. 


DeJong, Gerben and Wenker, Teg. (1983). "Attendant Care" in 
Nancy Crewe and Irving Kenneth Zola (Eds.). Independent 
Living for Physically Disabled People, pp. 157-170. San 
Francisco: Jossey-Bass. 


Laurie, Gini. (1977). Housing and Home Services for the 
Disabled. New York, NY: Harper & Row. 


Ratzka, Adolf D. (1986). Independent Living and Attendant Care 
in Sweden: A Consumer Perspective. Report No. 34. New 
York, NY: World Rehabilitation Fund. 


Scotch, Richard. (1984). From Good Will to Civil Rights. 
Philadelphia: Temple University Press. 



vii 
TABLE OF CONTENTS 


ACKNOWLEDGEMENTS ii 


PREFACE iii 


LIST OF TABLES ix 


LIST OF FIGURES xi 


Chapter Page 


I INTRODUCTION: SIGNIFICANCE OF ATTENDANT SERVICES.... 1 


The Need for a National Personal Assistance Program 
and Policy 2 
Why WID is Studying Attendant Services 7 
The Concept of Personal Assistance and 
Attendant Services 9 
Potential User Population for Attendant Services 13 
Overview of the Survey 17 


II DEVELOPMENT OF PERSONAL ASSISTANCE SERVICES 
IN THE U.S 19 


Medicaid - Title XIX 19 
Title XX and Social Services Block Grant (SSBG) 21 
Older Americans Act - Title III 22 
Medicaid Waivers 23 
Solely State and Locally Funded Programs 26 
Veterans' Aid and Attendance Allowance 27 


III PROGRAM GOALS, ADMINISTRATION AND FUNDING 29 


Goals 29 
Number per State 32 
Year of Implementation 32 
Administering Agencies 35 
Funding Sources 37 


IV PROGRAM STRUCTURE 39 


Eligibility 39 
Services 46 
Hours Services Available 52 
Maximum Service Amounts Allowed 55 
Direct Service Providers 57 
Determination of Services Allowed 64 
Medical Supervision 66 



viii 


V PROGRAM CONFORMITY TO THE INDEPENDENT LIVING MODEL 67 
VI PROGRAM UTILIZATION AND EXPENDITURES 78 
Service Utilization 78 
Expenditures 83 
Expenditures From Programs Not in WID Survey 85 
VII AVAILABILITY OF SERVICES ACROSS THE U.S 87 
VIII NEED VS. ADEQUACY OF THE SYSTEM TO MEET THAT NEED 91 
IX CONCLUSIONS AND RECOMMENDATIONS 95 
BIBLIOGRAPHY 115 
APPENDICES 128 


A. Definition of Terms 129 


B. Methodology 135 


C. List of Programs Identified by State 152 


D. Survey Instrument (Questionnaire) 171 



ix 
LIST OF TABLES 


Table Page 
1 Number of Programs by State 30 
2 Percentage of Personal Assistance Programs 
Funded by Various Sources 38 
3 Age Ranges Eligible by Programs 40 
4 Disabilities of Individuals Eligible to be Served 41 
5 Programs Having the Goal of Encouraging People to Work 42 
6 Partial List of Eligibility Requirements 45 
7 Number and Types of Programs in Sample 52 
8 Hours Service Available 54 
9 Days Service Available 54 
10 Hours & Days of Service Availability 54 1 
11 Types of Providers Utilized by Programs 57 
12 Provider Type Mix 57 
13 Level of Training Required for Individual Providers 59 
14 Circumstances in Which Programs Allow Relatives 
to be Paid Attendants 60 
15 Number of Benefits and Average Hourly Wage 
by Provider Type 62 
16 Number of Programs Allowing Consumers 
to Train, Pay, and Hire and Fire Attendants 63 
17 Bases for Service Evaluation 65 
18 Those Who Decide on Types of Service & Hours 65 
19 Number of Users Served by Attendant Service Programs 
at Various Levels of Conformity to the Independent Living Model 70 
20 Expenditure per User by Programs at Various Levels of 
Conformity to the Independent Living Model 71 



x 


21 Degree of Conformity to Independent Living Model 
by State 75 


22 Programs with the Highest Independent Living Orientation. 77 


23 Comparison Across States of Expenditures and 
Total Clients of Attendant Service Programs 80 


24 Number and Percentage of Programs Serving 
People with Various Disabilities 82 


25 Age Groups Served 82 


26 Total Expenditures on Attendant Services 
by Funding Source 84 


27 Number of Programs per State Offering Various Types of 
Personal Assistance by Ages Served 88 


28 Comparison of Home Care Survey Estimates of Need 
for Assistance in Personal Maintenance Tasks with 
Number Actually Being Served in Publicly Funded 
Programs from WID Survey 93 



xi 
LIST OF FIGURES 
Figure Page 
1 Number of Attendant Service Programs 
Implemented by Year 34 
2 Types of Administering Agencies 36 
3 Income Eligibility for Single Persons 
by Number of Programs 43 
4 Percentage of Programs Offering Various Types 
of Personal Maintenance/Hygiene Services 47 
5 Percentage of Programs Offering Various Types 
of Household Assistance Services 48 
6 Percentage of Programs Offering Various Types 
of Related Services 49 
7 Maximum Number of Service Hours Allowed per Week 56 
8 Degree to Which Programs Conform to 
Independent Living Model 69 
9 Degree to Which Title XIX Funded Programs Conform to 
Independent Living Model 73 
10 Degree to Which Title III Funded Programs Conform to 
Independent Living Model 73 
11 Degree to Which SSBG Funded Programs Conform to 
Independent Living Model 74 
12 Degree to Which Totally State and/or Locally Funded 
Programs Conform to Independent Living Model 74 


CHAPTER I 
INTRODUCTION 


The need for community-based personal assistance services 
for independent living and the lack of a nationwide policy 
direction and mechanism for meeting the need has become an issue 
of major significance for disabled people of all ages who feel 
these services are critical to their ability to control their 
lives. Along with people who are disabled and their families, 
advocates, legislators and social policy makers throughout the 
United States and abroad have placed personal assistance services 
at home and in the community on the national agenda. 


Personal assistance involves assistance, under maximum 
feasible user control, with tasks aimed at maintaining wellbeing, 
personal appearance, comfort, safety and interactions 
within the community and society as a whole. In other words, 
personal assistance tasks are ones that individuals would 
normally do for themselves if they did not have a disability.1 


The survey, which is the subject of this report, indicates 
that there are approximately 850,000 people receiving some sort 
of community-based, publicly-funded personal maintenance and 


1 These tasks include: 1) personal maintenance and hygiene 
activities such as dressing, grooming, feeding, bathing, 
respiration, and toilet functions, including bowel, bladder, 
catheter and menstrual tasks; 2) mobility tasks such as getting 
into and out of bed, wheelchair or tub; 3) household maintenance 
tasks such as cleaning, shopping, meal preparation laundering and 
long term heavy cleaning and repairs; 4) infant and child related 
tasks such as bathing, diapering and feeding; 5) cognitive or 
life management activities such as money management, planning and 
decision making; 6) security-related services such as daily 
monitoring by phone; and 7) communication services such as 
interpreting for people with hearing or speech disabilities and 
reading for people with visual disabilities. 



2 


hygiene, mobility and household assistance services. On the 
basis of the National Health Interview Survey and surveys of 
people who are institutionalized, we estimate that there are an 
additional three million people who could benefit from such 
services, but who currently are not receiving them from 
community-based, publicly-funded programs (Czajka, 1984, pp. 1317). 
In other words, for every person who is actually receiving 
community-based, publicly-funded personal assistance services, 
there are three people who could benefit from such services but 
who are not receiving them. 


Moreover, almost all the service programs which do exist are 
inadequate. Seldom do they offer the combination of personal 
assistance services necessary to enable people who are disabled 
to function satisfactorily at home and in the community. 
Distribution of these programs is uneven across the United 
States, eligibility criteria vary widely, and direct service 
providers are poorly compensated. 


The Need for a National Personal Assistance Program and Policy 


The need for personal assistance services has grown over the 
last few years because of several factors. First, the past few 
decades have seen major advances in medical technology. These 
advances have increased the ability to treat people who have 
experienced serious trauma, illness and birth-related disability, 
with the result that many individuals who would have died in 
earlier years are now surviving. Many of these people, however, 
end up with disabilities which interfere with their ability to 
perform activities of daily living independently. 



3 


Second, declining mortality and lengthening life expectancy 
have meant that an ever-increasing number of people in the U.S. 
population are old people (Van Nostrand, 1984). This demographic 
shift in itself has expanded the disabled population, since loss 
of functional ability (i.e. ability to perform activities of 
daily living) often accompanies the illnesses and injuries that 
occur more commonly among older people. The survey upon which 
this report is based shows that at least 77% of the people 
currently receiving personal assistance services are older people 
over the age of 60 or 65. 


  


Third, the demand for personal assistance services has 
expanded as a result of the growing emphasis on keeping and 
taking disabled and elderly people out of institutions. 
Custodial institutions are no longer an accepted means of meeting 
the personal assistance needs of disabled people of any age. 
This shift in attitude coincided with the emergence of the 
Independent Living Movement which, in conjunction with advocacy 
groups, was organized to foster independence and minimize the 
dependence of disabled people. 


In the fifteen years since the first Independent Living 
Program run by disabled people was founded in Berkeley, 
California, over 200 such programs have been established across 
the country. A top priority of the Independent Living Programs 
has been to get and keep disabled people out of institutions. It 
was very clear to these activists that, on the one hand, the 
successful deinstitutionalization of people with extensive 
disabilities, as well as the prevention of institutionalization 



4 


and avoidance of dependency, rested substantially on the 
availability of personal assistance services in the community. 
But, on the other hand, the existing service system lacked a 
strong community-based orientation and therefore did not offer 
the services that foster independence. 


Beginning in the late 1960's, people with mental retardation, 
along with their families and advocates, successfully 
pushed for normalization of the lives of people with intellectual 
disabilities. Over the past two decades many large state 
institutions for people with intellectual disabilities have been 
closed or had their populations greatly reduced. Various types 
of small group living arrangements have been established in 
communities to take their place.2 


There has been a similar deinstitutionalization trend in the 
treatment of people with mental or psychiatric disabilities. 
Community treatment for people with mental disabilities was 
promoted in the late 1950's and 60's and the large state 
hospitals discharged vast numbers of patients to an uncertain 
existence in cities all across the U.S. 


Fourth, the emphasis in meeting the needs of older people 
has shifted from institutional care (particularly nursing home 
care) to home and community based assistance. Older people and 
their advocates are waging a struggle to develop a "continuum of 


2 More recently, living arrangements offering greater 
degrees of independence have been established where assistance 
with activities of daily living is provided only to the extent 
needed. For example, a number of people may live in a small 
apartment complex and share the services of an assistant who 
comes in as needed to help with paying bills, filling out forms, 
shopping and so on. 



5 


long term care" where nursing homes are only one of several 
elements, rather than the primary locus of assistance for older 
people with functional limitations. In some states the 
establishment of new nursing homes has declined greatly, though 
this has not always been accompanied by the development of 
community-based services. 


A fifth factor increasing the demand for personal assistance 
services has been the transformation U.S. families have undergone 
over the past several decades. Changes have occurred which have 
made families less able to take upon themselves the job of 
providing personal assistance to their disabled members. A 
majority of working-age women now hold jobs outside the home. 
Rising divorce rates, shrinking family size and the growth in 
single-parent families have all contributed to the family's 
decreasing ability to provide personal assistance services for 
their disabled members of all ages (Oktay & Palley, 1983). From 
an Independent Living standpoint, moreover, it is often 
undesirable for family members to provide such services, even if 
they are able to do so. Employing a personal assistant allows 
all the family members more freedom and enables the member with a 
disability to function as an autonomous being rather than remain 
in a relationship that fosters dependency. 


Finally, during the late 1970's and early 1980's, the 
federal and state governments became very interested in the 
replacement of institutional care by community-based services, 
which include personal assistance services, because this seemed 
to be a more economical way to treat disabled people unable to 



6 


manage completely for themselves. 


The need for community-based personal assistance services, 
then, is clearly on the national agenda. Despite the growing 
need and interest, however, the federal government has neither 
promoted the development of these services nor established a 
coherent policy on the issue. 3 Jurisdiction over various 
personal assistance programs and policies is divided among 
numerous federal agencies and congressional committees. There is 
no coordinated "system". 


In the absence of a comprehensive federal policy and funding 
for personal assistance services, some states have tried to piece 
together several federal funding sources into a state program; a 
few other states have tried to meet the need by developing their 
own policy and program; still other states have done nothing in 
the area and, as a result, have almost no personal assistance 
services available. 


The lack of a comprehensive, coordinated national policy 
often means that, even where the services are available at all, 
users either have to maneuver through a fragmented maze of 
service programs in order to put together a package of required 
services, make do with services that are inadequate, or remain in 
an institution, nursing home, or isolated at home with their 
families. 


3 In contrast, a nursing home policy does exist. Currently 
the government, through Medicaid (see Chapter II), will pay for 
people who are disabled and who meet the income guidelines to 
live in nursing homes for the rest of their lives. Clearly a 
policy for personal assistance services would greatly reduce the 
need for nursing homes for such people. 



7 


In addition, those programs that do exist usually provide 


assistants only for poor people. This means that people either


need to have incomes below the poverty level or they need to earn 


enough not only to support themselves but also to pay for an 


assistant. The resulting need to earn a relatively high income 


thus discourages people from working, thereby increasing, rather 


than decreasing, public expenditures on the disabled.4 


Why WID is Studying Attendant Services 


The World Institute on Disability is well equipped to 


examine the issues surrounding personal assistance services 


because its staff thoroughly recognizes, from a number of 


perspectives, that personal assistance services are often the key 


to Independent Living for people of all ages with moderate and 


extensive disabilities. In the first place, those staff who use 


assistants have, of course, learned the importance of personal 


assistance services in their lives. Second, several staff 


members have held key policy positions in state or federal 


4 These disincentives to employment built into the current 
attendant service eligibility requirements should eventually be 
eroded by Section 1619 of the Social Security Act which was made 
permanent in November of 1986 and which takes effect June 1987. 
Under Sec. 1619, disabled people already receiving SSI who go to 
work are now allowed to retain Medicaid-funded medical benefits 
and federally-funded attendant services, where they exist, as 
long as the disabled individual: 1) continues to meet the SSI 
resource or asset limits, and 2) his or her earnings do not 
exceed a "reasonable equivalent" of the combination of previous 
SSI payments, Medicaid medical benefits and publicly-funded 
attendant services. In addition, individuals may shift back onto 
full SSI benefits if for some reason the job does not continue. 
Unfortunately, people receiving personal assistance services from 
solely state-funded programs may not necessarily retain these 
services unless the state links eligibility to SSI eligibility. 
Obviously, Sec. 1619 will have no impact on the bulk of personal 
assistance service users, i.e. people over ages 60 or 65. 



8 


government and have an appreciation of the pluralistic nature of 
the policy process and the role the respective levels of government, 
as well as the private sector, play in setting social 
policy. Third, WID was established by several founders of the 
Independent Living Movement in order to examine public policy 
issues from the perspective of that movement. Fourth, the 
Institute is located in California, which has the oldest and 
largest publicly-funded personal assistance service program in 
the country.5 


We are asked continually by people with disabilities how the 
California system can be used as a model in other localities. We 
are acutely aware of the dearth of adequate personal assistance 
services in most other parts of the country despite the growing 
demand for those services. It is clear that the lack of 
satisfactory personal assistance services is a major obstacle 
preventing many people with disabilities from achieving the goal 
of living independently. 


On the one hand, then, the WID staff know well the pivotal 
importance of personal assistance services to people with a wide 
range of disabilities. On the other hand, they have also been 
very aware of the inadequacy and spotty distribution of personal 
assistance services across the country and of the complete 
absence of information on the nature and extent of those services 


5 This is no coincidence. We believe, in fact, that the 
first Independent Living Center was established in California 
because the well-developed California personal assistance service 
system provided disabled Californians, including many of the WID 
staff, the services they needed to enable them to meet and work 
together for independence. 



that do exist. These considerations led the World Institute on 
Disability to undertake a survey of every publicly-funded 
personal assistance program in the country offering personal 
maintenance, hygiene, mobility and household assistance services 
in order to provide for the first time an accurate and 
comprehensive picture of the state of these key services in the 
United States today. This report presents the findings of that 
survey. 
Other significant sectors of the disabled community, as 
well, are recognizing personal assistance services as an issue 
  whose time has come. The National Council on the Handicapped 
(NCH), a body which advises Congress and the President on policy 
issues related to disability, has selected personal assistance 
services as one of its priority issues. We have relied on the 
results of their conferences on personal assistance services, 
which WID helped organize, in conducting this research. 
We believe that the data presented in this report begins to 
provide a basis on which the National Council on the Handicapped 
and other policy makers, planners, and consumer organizations can 
evaluate the current policies and services and determine what 
needs to be done to develop an adequate and equitable national 
system of personal assistance services for all those who need 
them. 

The Concept of Personal Assistance and Attendant Services 


This report covers the availability of attendant services 
only. Attendant services are a subset of the full range of 
personal assistance services disabled people need to function 



 

10 


independently in the community (see footnote 1, page 1, and 
Nosek, 1986). Attendant services include assistance with 
personal hygiene, mobility and household maintenance tasks. Z1;. 
Often these services are separated into groups and offered by 
separate programs. To compound the confusion, they are called by 

it 
other names as well: personal care services, personal care 
attendant services, home health aide services, homemaker 
services, chore services. 6 (See Appendix A for some 
definitions.) 
Our conception of appropriate personal assistance services 
goes much deeper than a simple listing of tasks, however. Of 
major importance is that personal assistance service users have 
the opportunity, if desired, to exercise as much control as they 
are capable of handling over the direction and provision of these 
services - i.e. who does them, how, and when. This concept of 
personal assistance is the Independent Living Movement's 
preferred model of service provision. The model rests on the 
philosophy that to be independent means to be empowered and self-
directed. Independence does not mean that one must be able to 
perform all tasks alone without help from another human being. 
This distinction may appear to some as not very significant, but 
it is absolutely crucial for people of all ages with extensive 
disabilities. Such individuals may be able to perform few if any 


6 In discussing and defining personal assistance and 
attendant services, we deliberately avoid the use of the term 
"care" (e.g. attendant care, personal care, etc.) because it 
implies that the disabled person passively receives the 
ministrations of the attendant. In our view, care is what sick 
people receive. Disabled people are not sick and, therefore, do 
not need "care". They need an assistant. 



11 


daily living tasks without assistance, but this fact has no 
bearing on their right to determine when, where and how these 
tasks are performed. For people who are unable or unwilling 
totally to direct their own services, the option to receive 
services from assistants who are trained and supervised by a 
public or private agency should be available. 


In addition, personal assistance services are personal 
assistance services even when they are performed by members of 
one's family. Consequently, family members who provide such 
services at the request of the user deserve to receive 
compensation for their labor. People with extensive disabilities 
may require 20 or more hours of assistance per week, the 
equivalent of a half-time job. This amount of assistance, which 
is quite beyond what family members would do for each other if 
none were disabled, clearly cuts into the time that would 
otherwise be available for outside employment and other familial 
duties. The vast majority of people who provide volunteer 
personal assistance in the U.S. are women (Reaser, 1985). In 
particular, most of these volunteers are middle-aged women 
performing attendant services for an aging parent, because most 
of the people requiring personal assistance are older people. 
These volunteer assistants are often prevented from seeking paid 
employment, a situation which greatly contributes to poverty 
among women. Clearly, when families maintain disabled members 
outside of institutions, they may save the government much money, 
but providing these services on a volunteer basis substantially 
reduces the family's earning potential and may limit the person 



12 


with a disability from achieving full independence. Having to 
depend upon the charity or good will of family and friends places 
the user in a dependent rather than an independent position. In 
addition, when family members are forced by economic or other 
reasons to provide attendant services, the resulting stress can 
lead to psychological or physical abuse of the person who is 
disabled. 


The Independent Living conception of attendant services also 
recognizes the need to augment regular service delivery systems 
with both emergency and short-term services, commonly referred to 
as respite. Emergency attendant services provide assistants in 
cases of emergency, for example when attendants cannot perform 
their duties because of sickness or personal difficulties and not 
enough notice can be given to make other arrangements. In cases 
where a disabled individual lives alone and has no relatives or 
friends who can help out at the last minute, emergency back-up 
services are crucial. 


Short-term services are intermittent attendant services 


replacing family members or regular assistants on a scheduled 


basis. They enable the individual who is disabled to get both 


the assistance needed and an opportunity to be independent of the 


family for brief periods. Short-term personal assistance also 


allows the family member to leave the home for anything from a 


few hours for errands to an evening out or several weeks' 


vacation. Emergency and short-term workers should be trained so 


they can go into a variety of situations, including homes with 


non-directing disabled persons. Pools of such workers should be 



13 
available.7 


Finally, personal assistance services are only a part of the 
"Complex Cube of Long Term Care" which "includes the areas of 
health care, social services, housing, transportation, income 
security and jobs" (Oriol, 1985, p. 15). Personal assistance 
services by themselves are not sufficient to enable people with 
disabilities to live to their maximum potential in the community 
but they are absolutely necessary to achievement of this goal. 


Potential User Population for Attendant Services 
The population of potential users of attendant services is 
large and diverse. It includes people of any age and with any 
disability - be it physical, sensory, intellectual or mental-
which results in long-term functional limitations that impair an 
individual's ability to maintain independence (see Zola, 1986 for 
a fuller discussion). 


7 Short-term services are part of the continuum of personal 
assistance services. Some people need these services daily, some 
need them several times a week and others need services on 
occasions when family members have to leave the home. Short-term 
services serve the person who is disabled by breaking the chain 
of mutual dependency between the disabled family member of any 
age and the rest of the family. Power dynamics in families can 
be changed by another person coming into the home for brief 
periods. Because families may have to provide major amounts of 
service, the disabled individual may be made the victim of the 
family's stress. In these situations, the disabled individual 
needs a break from the family and the routine equally as much as 
the family. Short-term personal assistance should be seen as an 
opportunity for the disabled individual to get out of the house, 
go on visits, see a film or even take a trip. Usually the family 
goes away for a good time and the disabled person stays at home 
or, even worse, is sent to a hospital. 



14 


The notion of who needs or can use an assistant has expanded 
in the last few years. It is generally accepted that people with 
physical disabilities often need assistance. More recently, 
however, people with mental or intellectual disabilities but no 
physical limitations have also begun to use assistants to help 
them function effectively in the community. Such assistants may 
help people pay bills, keep financial records, make up shopping 
lists, deal with landlords, etc. 


The user population includes people of all ages. There has 
been a tendency to treat older people with functional limitations, 
disabled working age people and disabled children as 
three distinct groups with totally different service needs. 
However, older people who have functional limitations are 
disabled in the same sense that younger disabled people are-
that is, they are limited in their ability to perform life-
maintaining tasks without assistance. Whether young or old, 
disabled people may be at risk of isolation, physical harm and 
institutionalization because of their functional limitations. 
The causes of these limitations may vary somewhat, but the 
effects are often very similar. Furthermore, older people with 


functional limitations have as much need to maintain control over 


their lives and the services they receive as younger people with 


disabilities. Thus, not only are personal assistance services 


often the appropriate answer for many older people with 


disabilities, but the principles of the Independent Living 


Movement apply to them as well. 


If personal assistance has not been widely recognized as a 



15 


means of fostering older people's independence, the use of non-
family paid providers to foster independence in disabled children 
has hardly even been considered. Making such assistance 
available has several benefits. It can alleviate financial 
pressure on families by allowing parents to take outside 
employment. This is particularly true in cases where a child 
with a disability needs assistance throughout the day and there 


are no volunteer resources available. 


Second, personal assistants for children can relieve the 
emotional strain that frequently develops within families as 
siblings (and sometimes parents) come to resent the 
disproportionate amount of time that parents must devote to a 
child who is disabled. 


Finally, providing personal assistants for children with 
disabilities allows them a more normal process of development and 
maturation. It allows them to go places (thus gradually expanding 
their range of mobility), engage in recreational pursuits, and-
particularly important during adolescence - interact with peers. 
Also, children with disabilities, assisted by an attendant, can 
begin taking on family chores and duties - such as setting the 
table or taking out the garbage - just as non-disabled children 
do as a normal part of growing up. 


This list of benefits obtained by providing attendants for 
children of all ages could go on and on. The primary point, 
however, is that the process of developing one's independence and 
self-management skills commences long before a person with a 
disability reaches adulthood. It is a process that occurs 



16 


throughout the normal course of development that all children go 
through. 


Not only does the Independent Living view of the potential 
attendant service user population include people of all ages, it 
also includes people in various living arrangements. People with 
functional limitations who live independently obviously need 
assistance. People living with their families also need 
assistance; whether in the form of occasional short-term services 
or on a regular basis, so that the disabled person has more 
independence and the family member, relieved of attendant duties, 
is free to work and/or maintain the home. Attendants may also 
work for clients in various congregate living arrangements such 
as cluster housing and group homes. In these situations, 
attendants may be shared by several people, though this type of 
arrangement has drawbacks because it frequently means that the 
individual user loses control over when and how long the 
attendant is available. 


In addition, people can use personal assistance not only at 
home but also at work, recreation and travel. 


Corollary to this inclusive definition of who can benefit 
from personal assistance services is the proposition that the 
medical diagnostic category a person falls into should have no 
bearing on his or her eligibility for services, since people with 
similar diagnoses may have dissimilar functional abilities and 
face different sets of environmental constraints. Determination 
of need for personal assistance should be based on a functional 
assessment which measures one's abilities and limitations in 



17 


performing necessary activities of daily living within a 
particular environment. 


Overview of the Survey 


This report is based on the results of a survey - conducted 
by mail or telephone from February 1985 to January 1986 - of 
administrators of every program in the United States (excluding 
Puerto Rico and the U.S. territories) which provided personal 
maintenance and hygiene and/or household assistance services on 
either a regular or short-term basis. 


Programs for disabled people of all ages were included 
except those exclusively for people with mental disabilities 
("mental illness") and/or people with intellectual disabilities 
("mental retardation"). Because of fragmentation of the service 
system, these programs are administered separately and would have 
required substantial additional resources to locate and survey. 
One-hundred seventy-three programs meeting these criteria were 
identified. Nineteen of these, for various reasons, are not 
included in the results presented here. 8 A detailed discussion 
of the survey methodology can be found in Appendix B. A copy of 
the questionnaire is in Appendix C. 


The questions addressed by WID's survey and by this report 


are the following: 


1. What are the goals of the programs? How are the 
programs structured? What are their administering 

8 Throughout this report, when a table refers to data from 
fewer than the 154 programs in the data set, the actual number of 
programs responding to that item has been noted. 



18 


agencies, funding sources and eligibility criteria? 
What services are provided and who provides them? 


2. How well do the programs meet scope and quality 
criteria for an adequate attendant services system 
developed by the participants at the July 1985 
conference in Washington, D.C. sponsored by the 
National Council on the Handicapped in conjunction with 
the World Institute on Disability? 
3. Where do programs fall along the continuum between 
the Independent Living and medical models? (See p. 67 
for description of program models.) 
4. What is the degree of attendant service 
utilization, i.e. how many people are currently 
receiving some type of attendant services? How does 
this number compare to the number of people who could 
benefit from such services? 
5. Are attendant services equitably distributed across 
the U.S.? 

19 


CHAPTER II 


DEVELOPMENT OF PERSONAL ASSISTANCE SERVICES IN THE U.S. 


There are several federal and state programs that currently 


provide at least part of the constellation of personal assistance 


services needed by people who are disabled. The oldest and 


largest arose with the development of the U.S. social welfare 


system, in particular the 1965 amendments to the Social Security 


Act which established Medicaid (Title XIX) and the 1974 


amendments which created Title XX, which in 1981 became the 


Social Services Block Grant program.9 


Medicaid - Title XIX 


Medicaid was established to provide medical assistance to 


low-income people of all ages. There are no federal funding 


limits. The program is financed jointly by federal and state 


funds, with the state's share varying from 22.5% to 50%. In 


addition, the bulk of Medicaid funds go toward hospital, nursing 


home and institutional services. States are required minimally 


to deliver health-related home services from a certified Home 


9 Medicare (Title XVIII of the Social Security Act) was also 
created in 1965 to provide health insurance benefits, primarily 
for those eligible for Social Security Retirement Benefits. 
Until recently, it provided medically related services to 
homebound people for a very limited period, post hospitalization. 
In the early 1980's the limitations on number of visits was 
removed. Though this obstacle has been removed, the "homebound" 
and "medically related" provisions remain. The homebound 
provision requires that recipients be so ill or disabled that 
they seldom if ever leave the house. And the medically related 
provision requires that all services provided must be certified 
by the physician as relating to maintenance of the individual's 
health. Even if interpreted liberally, these provisions continue 
to make Medicare a dubious source for personal assistance service 
dollars. 



20 


Health Aide or Registered Nurse. Beyond this minimum there are 
wide variations from state to state in home and community-based 
service benefits offered, groups covered, income eligibility 
criteria, cost sharing formulae and levels of provider 
reimbursement. States have the option to provide, in addition to 
home health services, "personal care services" in the home - such 
as dressing, feeding, bathing, ambulation and transfers - from a 
less skilled provider on a long term basis. 


Even with the "personal care" option and the Medicaid Home 
and Community-Based Services Waivers (see page 23), the thrust of 
Medicaid home-delivered services is still heavily weighted toward 
medically related services. Programs require frequent 
supervision by a Registered Nurse. Physicians must certify that 
services are in some way related to maintenance of an 
individual's health. Personal assistance services have to be 
delivered by certified Home Health Aides or less skilled agency-
trained, not user-trained, individuals. 


A few cities and states have found innovative ways to work 
within the medically oriented Medicaid framework and still make 
it possible for individuals who are disabled to maintain a great 
deal of control over who delivers the service and how it is 
delivered. In Denver, Boston, New York City and a few other 
areas, the Independent Living Programs have been designated as 
Home Health Agencies. They in turn allow disabled people to hire 
and train their own assistants, with Center approval, and some 
even pay the assistant's wages directly to the consumer who then 
pays his or her own assistant. 



21 


Title XX and Social Services Block Grant (SSBG) 


Between 1975 and 1981, Title XX of the Social Security Act 
provided funding for four social service program goals, one of 
which was the prevention of institutionalization by providing 
community or home based services including homemaker, chore and 
home health aide services. 10 Title XX was restructured in 1981 
as a block grant to states, generally allocated on the basis of 
the state's population, with no state matching requirement. 
Since 1975, however, the funding level for Title XX/Social 
Services Block Grant (SSBG) has been raised very little, from 
$2.57 billion in 1976 to $2.7 billion for 1984, 1985 and 1986. 


Under the block grant, each state designs its own mix of 
services and determines eligibility requirements. In general, 
however, states still use SSBG for services to the poor. The 
exception is protective and emergency services directed at 
preventing abuse of children or adults, which are provided 
without regard to income and which include personal assistance. 


Most of the states still provide home based services of some 
sort using SSBG monies, but few have developed comprehensive SSBG 
attendant services programs which encompass personal maintenance, 
hygiene, mobility and household assistance. California's In-Home 
Supportive Services system (IHSS), with expenditures of $370 
million in FY85-86 and a case load of 111,300, is a notable 
exception. 


It is also common for states to combine Medicaid funds for 


"personal care" with SSBG monies for household assistance either 


10 See Appendix A for definitions. 



22 


in one program or in a service package for an individual who 
requires both services. The latter arrangement occurs in states 
with less developed social/health service systems and is the 
least desirable because the disabled consumer must deal with two 
different providers and with two different sets of regulations 
and administrative staffs. 


Older Americans Act - Title III 


The most recent social welfare program offering personal 
assistance services was established under Title III of the Older 
Americans Act. Title III was designed to either augment existing 
services or to develop new ones to meet the needs of people over 
60 years old. Unlike Medicaid and SSBG programs, there are no 
income eligibility rules for Title III, though federal 
regulations encourage local Area Agencies on Aging to target 
poorer people, as program funds are limited. 


The program requires that states expend an "adequate 
proportion" of their allotted funds for a wide variety of 
services, including personal assistance services such as 
"personal care", chore, housekeeping, shopping, interpreting and 
translating, repairs/maintenance/renovations, escort and letter 
writing or reading, unless the state agencies can demonstrate 
that such services are already adequately available through some 
other source. In general, the Area Agencies on Aging supplement 
Medicaid and Title XX funding for home care services with Title 
III funds. In addition, states receive separate allotments for 
home-delivered and congregate meals for older people, services 
which by themselves may enable a person to remain independent in 



23 
his or her own home. 


Although Title III programs have grown since the early 
1970's, Title III funds are limited and cannot begin to fill the 
need for the myriad of services Title III recognizes as necessary 
to prevent unnecessary and debilitating institutionalization or 
isolation within the home, including legal services, information 
and referral and nursing home ombudsmen programs. Given the 
breadth of Title III services, even a large increase over the 
existing funding allocation cannot go far. Another difficulty 
with Title III is that personal assistance services under Title 
III, where they do exist, are offered solely by Contract and 
Government agency workers, the least user controlled service 
delivery systems and the most expensive. However, it is 
important to note that while Title III seems to provide personal 
assistance services for very few people at this time, it is a 
very enlightened policy. Unlike the other funding sources, Title 
III actually includes services for people with all types of 
disabilities - physical, mental, intellectual, communication and 
sensory. Thus readers, interpreters and companions are included 
in the service package. 


Medicaid Waivers 


A major attempt to investigate ways to halt the growth of 
Medicaid expenditure, the largest proportion of which goes toward 
institutional and nursing home care of people with intellectual 
disabilities and older people in particular, was the development 
of the Medicaid Waiver program in 1979. States can apply for a 
Waiver of the regular Medicaid rules to deliver a variety of home 



24 


and community-based services to older people or people with 
emotional or intellectual disabilities in order to avoid institutionalization. 
An assumption underlying the waiver programs was 
that home and community based services are less costly than 
institutional services. Among the services which are provided by 
waiver programs are attendant and short-term (respite) services. 
Under this program states can waive the usual Medicaid requirements 
with approval of the Health Care Financing Administration 


(HCFA), including broadening the array of services offered, 
liberalizing income eligibility for parents of eligible children 
and providing services only to certain populations. 


Currently there is considerable tension between the Health 
Care Financing Administration (HCFA) and the states regarding use 
of the Waivers. States are using Waiver monies to increase 
development of noninstitutional services. Theoretically the 
availability of more community and home health services could cut 
down on nursing home costs, but the U.S. Government Accounting 
Office (1982) argues that increased demand could offset any 
savings. Consequently federal authorities, whose major concern is 
controlling Medicaid expenditures, have tried to reduce greatly 
the number of people who can be covered by the waivers. These 
officials argue that, since the number of people who would 
ordinarily be in a nursing home is limited to the number of 
nursing home beds which exist in any particular state (an amount 
which varies widely), then the number of people on the waiver 
must be limited to those who quite literally would be admitted to 
a nursing home if it weren't for the waiver. Since those who 



25 


aren't admitted because of bed shortages somehow get their needs 
met in other settings by family and friends, the argument goes, 
the federal government has no responsibility to maintain these 
people. 1l In addition, the federal government requires states 
not to spend on any one individual more than the average cost of 
what it takes to maintain people in nursing homes, less a certain 
percentage for room-and-board costs. This last rule 
discriminated against people with extensive disabilities because 
the bulk of people in nursing homes are older people with fewer 
service needs and presumably lower average service costs. 
Responding to pressure, Congress has now changed this rule so 
that there is a two-tiered limit - one the average cost of 
maintaining physically disabled people and the other the average 
cost of maintaining other nursing home residents (Consolidated 
Omnibus Budget Reconciliation Act, 1985). 


In contrast to the federal government's position, state 
administrators, who face a growing demand for home-delivered 
services, originally viewed the waivers as the opening of a way 
to expand Medicaid coverage to very comprehensive home/community 
based services for all who need it. At this point, unfortunately, 
the federal government is using its approval authority to 
deny or impede applications for and renewals of waivers 


(Association for Retarded Citizens, 1985, pp. 6-7). As a result, 


11 Emma Gunterman, Senior Advocate for the California Rural 
Legal Assistance Foundation, in a private communication (1986) 
stated that "it is a myth that all of these persons have 
relatives and friends and, if they have them, that they can give 
that level of care. Persons who physically qualify for nursing 
facility care often end up in County Hospitals." 



26 
comparatively few disabled people are served through the waiver 
programs. 

Solely State and Locally Funded Programs 
 
The development of Medicaid Waiver Programs coincided with tI 
the establishment of a number of state-funded, consumer oriented 
programs, largely as a result of the development of the 
Independent Living Movement. In the past 20 years there had been 
a sharp increase in the number of young people with extensive 
disabilities, people who in earlier periods would most certainly 
have died of respiratory complications and spinal cord injuries 
in particular. Increased survival rates occurred because of 
advances in medical technology made in response to the polio 
epidemic of the 1950's, World War II, the Korean War and the 
Vietnam War as well as major progress in intensive care and 
emergency medical technique in the late 1970's and the 1980's. 
Once stabilized medically, many of those who survived faced a 
full lifetime in a nursing home, dependence upon their families 
until the parents become too old to provide the necessary 
attendant services, or dependence upon service programs that 
encouraged dependence and poverty. 
Those attendant service programs which existed for non-
veterans were only available from home health agencies or 
government workers to those whose income and assets were at or 
near the poverty level. People with extensive disabilities faced 
a dilemma. They either had to earn a substantial income in order 
to pay for a user-directed personal assistant and other 
disability related expenses out of pocket, or they had to not 



27 


work at all and receive federal disability income in order to 
qualify for Medicaid and SSBG services which provided personal 
assistance according to the hours and plans of the assistant. For 
many people with disabilities, as for most members of our 
society, earning a high income is not an achievable goal. And it 
is even less achievable for people with extensive disabilities 
who may be able to work only part time or have inadequate 
education. As a consequence, publicly funded personal assistance 
services which would allow an individual to live in his or her 
own home with maximum personal control over how services are 
delivered combined with the opportunity to work as much as 
possible became a major goal of the Independent Living Movement. 


During the late 1970's and early 1980's, a number of states 
responded to this need by creating personal assistance service 
programs funded entirely by state and local sources which not 
only allowed disabled people to hire, train and, if necessary, 
fire their own assistants but also had realistic cost-sharing 
formulae allowing people with disabilities to work and still 
receive a personal assistant subsidy payment. 


Veterans' Aid and Attendance Allowance 


In addition to Medicaid, SSBG, Title III and state-funded 


personal assistance programs, there is also the "Aid and 


Attendance Allowance" furnished to Veterans in addition to their 


monthly compensation for disability incurred during active 


service in the line of duty (Title 38, 1984). Eligible veterans 


in need of regular aid and attendance received either $906 or 


$1,350 (if they were at risk of institutionalization) to purchase 



28 


the service of a personal assistant who is either a family 
member, hired through an agency or is an individual provider. 
The individual receiving the higher rate of compensation is 
considered to need "personal health-care services" which must be 
provided by a person either licensed to provide these services or 
supervised by a licensed health care professional. 


Beyond the various federal and state programs offering part 
of the constellation of services currently available, another 
factor shaping the nature of personal assistance service programs 
in the U.S. is the socio-economic situation of the individual 
states. Since the eligibility requirements, services delivered 
and levels of provider reimbursement are determined on the state 
level for all programs except those for veterans, the level of 
prosperity in the state and its orientation toward social welfare 
programs play a major role in determining who has access to 
personal assistance services. In general, social service 
programs of all kinds, including personal assistance services, 
are very sparse in the Southwest and Southeast. Some states have 
one or two major programs that serve all ages and disability 
groups, e.g. Illinois and California; others have several 
programs which target special groups or which must be combined to 
deliver an entire service package. 


Much of the survey data presented in the following chapters 
will serve to expand this discussion by presenting the current 
state of personal assistance services in the U.S. 



29 


CHAPTER III 


PROGRAM GOALS, ADMINISTRATION AND FUNDING 


There are 173 programs in the U.S. that offer comprehensive 


or selected personal assistance services on a long-term or short

 


term (respite) basis.As shown in Table 1, 154 (89%) of these 


were included in the survey results. 12 This chapter gives an 


overview of the number per state, their year of implementation, 


the goals of these programs, the state agencies administering the 


programs, and their funding sources. 


Goals 


Virtually all of the programs (96%), according to their 


administrators, are directed at preventing institutionalization 


by making it possible to keep people in their own homes or 


communities. Two-thirds of the administrators state that 


containing the cost of long term care is also an objective of 


their programs. Only 16 programs (10%) are aimed at allowing 


people to work, or emphasize work as a goal, while still 


providing a personal assistance service subsidy. 


12 Three administrators refused to cooperate; three 
questionnaires arrived too late to be counted, and 13 programs 
were not included because the State Area Agency on Aging had no 
overall statewide data on the Title III services in their states. 
Four programs, the Home Health Agency Programs in Alaska and 
Massachusetts, and the Chore Program and Homemaker programs in 
Massachusetts, were interviewed but were subsequently dropped 
from the survey results because they did not seem to be programs 
that offered long-term services. There may be others we should 
not have included, most likely a few of the purely "personal 
care" programs, but we decided to rely on administrator judgment 
unless the program was obviously delivering only acute health 
care and nursing services. Readers should note that, because 
administrators could not always answer every question, the number 
of programs responding to a particular question is noted in the 
tables where appropriate. 



30
TABLE 1


NUMBER OF PROGRAMS BY STATE 

STATE		# of Programs # of Programs 

Alabama 
Alaska 
Arizona 
Arkansas 
California 
Colorado 
Connecticut 
Delaware 
Florida 
Georgia 
Hawaii 
Idaho 
Illinois 
Indiana 
Iowa 
Kansas 
Kentucky 
Louisiana 
Maine 
Maryland 
Massachusetts 
Michigan 
Minnesota 
Mississippi 
Missouri 
Montana 
Nebraska 
Nevada 



 




in Sample not in Sample Total 





# of Programs 
State in Sample 


New Hampshire 4 
New Jersey 3 
New Mexico 5 
New York 6 
North Carolina 2 
North Dakota 1 
Ohio 6 
Oklahoma 2 
Oregon 2 
Pennsylvania 3 
Rhode Island 4 
South Carolina 2 
South Dakota 3 
Tennessee 1 
Texas 4 
Utah 3 
Vermont 2 
Virginia 2 
Washington 2 
West Virginia 1 
Wisconsin 5 
Wyoming 1 
Dist.of Columbia 2 


TOTAL 154 


31 
# of Programs 
not in Sample Total 



a Refusals: Minnesota Waiver Program and North Carolina and 
Wyoming Title XX Programs 
b Title III Programs for which state agency on Aging had no 
state-wide data 
c Waivers: Questionnaires arrived too late to be included in data 
set. 



32 


Number Per State 


On the average there are three programs per state. The 
range is from one program each in Arizona, Louisiana, North 
Dakota and Tennessee, to six each in Massachusetts, Missouri, New 
York, and Ohio, with the most frequent number of programs per 
state being two. It is encouraging to note that there is no 
state without a personal assistance service program of some sort, 
which means there is a basis upon which to build and demonstrate 
the extent of need in any particular state. This does not mean, 
however, that anywhere near all the people who need services are 
being served. 


Year of Implementation 


The programs range in age from 32 years old to less than one 
year old (Fig. 1). Only four programs were in existence before 
Titles XVIII (Medicare) and XIX (Medicaid) of the Social Security 
Act were enacted. The four programs established prior to 1965 
were the Connecticut Essential Services Program (1954), the 
Montana Home Attendant Program (1954), the In-Home Supportive 
Service Program in California (1959) and Washington, D.C.'s In-
Home Support Services Program (1958). 


After the establishment of Medicaid and Medicare, the number 
of programs grew slowly. The rate of increase rose after the 
Title XX (Social Services Block Grant) was enacted in 1974 and 
remained at a fairly steady rate of increase until the 1980's. 
Eighty programs (56%) started after 1980, among them the 37 
Medicaid Waiver Programs for physically disabled children and 
adults of all ages authorized as a result of the Omnibus Budget 
Reconciliation Act of 1981. As noted earlier, the federal 



33 
government greatly decreased the number of Waiver approvals 
beginning in 1985, and it is likely that the number of new 
federal programs being initiated will continue to be sharply 
reduced unless there is a change in federal policy. 



Figure 1 
NUMBER OF ATTENDANT SERVICE PROGRAMS 
IMPLEMENTED BY YEAR (n=145) 


a One waiver program administrator did not know the date the program was 
irmlemented. One waiver program was established in 1970 and received a waiver in 
1981. It is included among the five programs established in 1970. Waiver programs 
exclusively for people with mental and intellectual disabilities are not included. 


35 
Administering Agencies 


The bulk of programs (45%) are administered by the state 
level agencies (often called Departments of Social Services, 
Human Resources or Public Welfare) which have jurisdiction over 
social, health and welfare programs. As can be seen in Figure 2, 
27% of the programs are administered by the State Agencies on 
Aging directly; 17% are administered by either medical assistance 


 


or health departments. State vocational rehabilitation agencies



administer only 7% of the programs using funds from state 
sources, not federal vocational rehabilitation allocations. An 
unexpected finding is that the personal assistance services 
programs in Maine, Nevada, North Carolina, and South Dakota are 
administered directly by an Independent Living Program. 



Figure2 
TYPES OF ADMINISTERING AGENCIES (n=147) 


General Social Service 
Departments 

State Agencies 
on Aging 


Medical Assistance 

Vocational 
Rehabilitation 


llealth Departments 

Independent Living 
Programs 
Other 


 

 

1020304050 
Percent 



37 


Funding Sources 


More than a third of the programs rely on Medicaid funds, 


including expenditures under Medicaid Waivers granted by the 


Health Care Financing Administration of the U.S. Department of 


Health and Human Services (Table 2). As explained above, state 


Medicaid programs combine federal, state and (in some states) 


local funds. Somewhat less than a quarter of the personal 


assistance programs are funded by Social Services Block Grants, 


Title XX of the Social Security Act. Twenty-two percent of the 


programs are funded entirely from state or local sources. 


Allocations from Title III of the Older Americans Act are the 


sole federal funding source for 10% of the personal assistance 


programs. Only 12 programs (8%) function on a combination of 


federal funding sources. The respondent for one program 


administered by an Independent Living Program reported that funds 


from Title VIIB of the Rehabilitation Act were used when the 


personal assistance program was first established, which was the 


year included in the survey. 



38 
TABLE 2 


PERCENTAGE OF PERSONAL ASSISTANCE PROGRAMS 
FUNDED BY VARIOUS SOURCES (n=141) 


Programs 
Funding Source Numbera Percent 
Title XIX: 51 36% 
Title XX (SSBG) 32 22% 

State/Local 30 22% 

Title III 15 10% 


Mixed Federal: 
Titles XIX & XX 6 4% 
Titles XIX, XX & III 2 1% 
Titles XX & III 3 2% 
Titles XIX & III 1 .6% 

Title VIIB 1 .6% 


a There were 13 program administrators who were unable to specify 
the source of funding. 



39 
CHAPTER IV 
PROGRAM STRUCTURE 


This chapter provides a broad overview of the structure of 
the programs surveyed, including eligibility criteria, types and 
extent of services available, who actually provides the services, 
and who evaluates the user to determine service need. No attempt 
was made to judge the quality of the services provided. 


Eligibility 


Programs determine eligibility based on a large number of 
factors including age, employment status, disability type, and 
degree of poverty. 


Age Range 


Most of the programs (88%) will serve people over 60 or 65 
years old. Somewhat fewer (72%) serve adults between the ages of 
18 and 64. Less than half (45%) serve children. Although some 
administrators questioned whether programs can successfully serve 
people of all ages given their different needs, many programs do 
just that. Currently 41% of the programs serve people of all 
ages while 26% combine adults of all ages or children with adults 
under age 65 (Table 3). 



40 
TABLE 3 
AGE RANGES ELIGIBLE BY PROGRAMS (n=153) 
Programs 
Age Range Number Percent 


All ages 62 42% 
18 and above 38 24% 
65 and above 36 23% 
18 - 64 9 6% 
Less than 18 6 4% 
Less than 65 2 1% 

Disability Groups Served 


In terms of disability groups served, 58% of the program 
administrators say they serve people with all types of disabilities, 
physical (including those with brain injuries), 
intellectual and emotional. 26% of the programs serve only 
people with physical disabilities and those with brain injuries; 
and another 10% serve only those with physical disabilities 
(Table 4). 


The fact that so many programs accept people with emotional 
and intellectual as well as physical disabilities calls into 
question the hypothesis that the service system for people with 
these disabilities tends to be quite separate. It also raises 


the question of whether separate personal assistance programs for 
people with emotional and intellectual disabilities with costly 
separate administrations are really necessary. It would be most 
interesting to explore the additional personal assistance service 


programs administered through State Departments of Developmental 
Disabilities and Mental Health to determine how many of them 
there are and how they differ from the programs in this survey. 



41 
TABLE 4 
DISABILITIES OF INDIVIDUALS 
ELIGIBLE TO BE SERVED(n=136) 
Programs

 

DisabilityNumber Percent • 
Physical Disability, Brain Injury, 
Intellectual Disability, 
Emotional Disability 80 59% 
Physical Disability, Brain Injury 35 26% 
Physical Disability 14 10% 
Physical Disability, Brain Injury, 
Emotional Disability 5 4% 
Physical Disability, Brain Injury, 
Intellectual Disability 2 2% 

Employment Status 

As noted earlier, only 16 out of the 154 programs interviewed 
encourage people to work (Table 5). In fact, six of these 
require an individual to be employed in order to be accepted for 
the program, and 4 of these programs require, in addition, that 
people be employed a minimum of 20 hours per week. 


42 


TABLE 5 


PROGRAMS HAVING THE GOAL OF ENCOURAGING PEOPLE TO WORKa 


Name 


Massachusetts Personal Care Program 


Connecticut Personal Care Assistance Program 


Maine (Attendant Program for Employed People) 


Washington State Chore Services 


Pennsylvania Attendant Care Demonstration 


Nebraska Disabled Persons & Family Support Program 


Nevada Attendant Care Program 


Mississippi Independent Living Attendant Care Pilot Program 


Alaska General Relief Medical Exception Programb 


Maryland Attendant Care Program 


Massachusetts Medical Assistance Program (for Hearing Impaired) 


North Carolina Attendant Care Program 


Ohio Personal Care Assistance Program 


South Dakota Attendant Care Program 


Utah Personal Attendant Care Programb 
Vermont Personal Services Program 


aTwo other program administrators said their program had work as 
a goal but one served only SSI eligibles and the other was a 
Title III program. 


bProgram no longer exists 


Income 


Most of the programs not only do not encourage people to 


work, they require people to be poor (Figure 3). In 1985, the 


poverty level for a single person was $5,250 (US Department of 


 


Health and Human Services, 1985).Only 23% (35) of the 154 


programs surveyed accepted people with incomes above $10,500, 


twice the poverty level. Half (77) of the programs either had 


specific limits of $5,250 or less, or limited eligibility to 


recipients of entitlement programs (such as Supplemental Security 


Income, Medicaid, or Social Security Disability Insurance) whose 





44 


own income eligibility limits are near or below the poverty 
leve1. 13 Though there is no definitive study of the extra costs 
disabled people have to bear because of their disabilities, such 


as equipment replacement and repair, housing and clothing 
adaptation, medical insurance (if they can get it), and 
transportation, it is safe to assume that people with extensive 
disabilities earning less than $25,000 a year could not easily 
cover those expenses and the cost of an attendant for 20 or more 
hours a week. 


Only 56 programs (36%) had a oraduated shared cost formula, 
i.e., a system by which disabled individuals pay more and more of 
the cost of their personal assistant based on income up to a 
certain ceiling. The most adequate of these exclude disability-
related expenses from income or have an income ceiling over 
$20,000 per year (e.g. programs in Maryland, Pennsylvania, Ohio, 
South Dakota and Vermont. ) Without such a system, the most 
severely disabled with high disability costs would have to earn 
very high incomes in order to afford an attendant, apartment, 
transportation, medical bills and the like on their own. 


Other Eligibility Criteria 


In addition to age, disability type, employment status and 


income level, the programs surveyed had a wide variety of other 


eligibility requirements which are listed below in Table 6. The 


two most common were being at risk of institutionalization (57%) 


and physician's orders (42%). There were some programs that only 


admitted people who lived in certain counties or cities within a 


13 See Methodology, Appendix B, for operational definitions. 



45 


state. Some of these were Medicaid Waiver or demonstration 
projects, but others, like the programs in Nevada which are 
locally funded and administered and are limited geographically to 
the two urban areas around Reno and Las Vegas, are permanent 
programs. Most unusual were programs that only accept people 
with very narrowly specified disabilities, eg. traumatic spinal 
cord injuries, or a certain level of functions, eg. wheelchair 
user or inability to use a certain number of limbs. Some 
programs which only use individual providers supervised by the 
recipient require recipients to be able to manage their own 
attendants. 

TABLE 6 
PARTIAL LIST OF ELIGIBILITY REQUIREMENTS(n=154) 
Programs 

Requirement Number Percent 
Risk of Institutionalization 89 57% 
Physician's Orders 65 42% 
Family Unable/Unwilling to provide 
Attendant Services 34 22% 
Severe Disability 26 17% 
Resident in Certain Geographic Area 25 16% 
Able to Manage Own Attendant 21 13% 
Inability to use certain number of limbs a 11 7% 
Currently a Nursing Home Resident 7 5% 
Wheelchair User 5 3% 
Member of Specific Disability Group 5 3% 
Living Alone 5 3% 

a two limbs (n=4); three limbs (n=3); four limbs (n=4) 


46 


Services 


The survey (See Appendix C) divided the possible services 
into personal, domestic and related services. Personal services 
are those which involve bodily contact. As one can see in Figure 
4, there are a certain core of services - such as dressing, 
bathing, oral hygiene and grooming - that were offered by almost 
every program in the sample. Even programs that offer mainly 
"homemaker" and "chore" services tend to offer dressing, limited 
hygiene and feeding. Far fewer programs allow assistants to help 
with catheter management or to administer injections and 
medications. 


Domestic services are as important to an attendant program 
as personal services. Domestic services involve tasks necessary 
to maintain one's home. As can be seen in Figure 5, most 
programs offered meal preparation, light cleaning, meal clean-up, 
laundry and shopping. Less frequently available are the heavier 
and more infrequent tasks which are also an important part of 
maintaining one's home. 


In addition to personal and domestic services, there are a 
number of related services that are often necessary to sustaining 
a disabled individual at home on a long term basis. Figure 6 
lists the percentage of programs offering some of these additional 
services. Transportation offered by these programs is 
most often for medically related outings. Escort is sometimes 
available for general shopping as well. However, consumers who 
manage their own assistants can use them for a wider variety of 
trips. 



Dressing 

Bathing 
Oral Hygiene and 
Grooming 
Feeding 
Transfers 
Ambulation 

Skin Maintenance 

Bowl and Bladder 
Assistance 
Prosthesis Assistance 

and Range of Motion 
Medications 
Menstnial Assistance 
Respiration 
Catheter Assistance 
Injections 

Figure 4 

PERCENTAGE OF PROGRAMS OFFERING VARIOUS 
TYPES OF PERSONAL MAINTENANCE/HYGIENE SERVICES (n=154) 




Meal Preparation 

Light Cleaning 

Meal Clean-up/ 

Menus 
Laundry 
Shopping 
Chores 

I Leavy Cleaning 
Repairs/ 
Maintenance 

Figure 5 

PERCENTAGE OF PROGRAMS OFFERING VARIOUS 
TYPES OF HOUSEHOLD ASSISTANCE SERVICES (n=154) 

 




Transportation 

Case 
Management 

Escort 

Respite 
Teaching and 
Demonstration 
Protective 
Supervision 
Home Delivered 
Meals 

Telephone 
Reassurance 
Readers 

Interpreters 

• 

Figure 6 

PERCENTAGE OF PROGRAMS OFFERING 
VARIOUS TYPES OF RELATED SERVICES 
(n=154) 




 

50 1 


It was heartening to learn that more than half the programs 
in the country included some sort of short-term (respite) 
services. Respondents did not specify the extent of these 
services, so it is not possible to say how many only offered 
services for a few hours at a time rather than for 24 hours a day 
for a week or more. 


Very few programs offered readers for those with visual 
disabilities or interpreters for people with hearing or speech 
disabilities. Few realize the major expense these services can 
be for disabled people nor how important they are to fostering 
independence and ability to work and participate in one's 
community. 


In addition, there are a number of services and aspects of 
service delivery which merit further study. First is the issue 
of child care. Currently, California is attempting to prohibit 
people with disabilities from using their assistants to care for 
children. As more and more people with disabilities choose to 
have children, this issue should become very controversial. 
Second are emergency services, which are essential to people 
living on their own. Back-ups are needed if an assistant cannot 
work. Some ILP's maintain pools of people available for 
emergencies, but this service needs to be widely available. 


Other services not covered in the survey are adult day 
services, transportation programs not associated with personal 
assistance service programs, and cognitive services for people 
with intellectual disabilities. We also did not inquire about 
the degree of geographic mobility that programs allow. Can 
personal assistants accompany the consumer to work, out-of-town/ 



51 


to recreational activities, and so on? Obviously the more 
control a consumer has over the assistant's duties, the more such 
outings can occur. However, limits on the amount of service 
allowed will circumscribe the extent to which a consumer can 
utilize an assistant for long periods away from the home. The 
availability of personal assistance services outside the home is 
a major factor in the integration of people with extensive 


disabilities into society. 


In order to get a clearer picture of the configuration of 
services offered by personal assistance programs across the U.S., 
a core of services was judged to define a certain type of 
service. The core of personal services is feeding, bathing, 
dressing, bowel and bladder care, oral hygiene and grooming, and 
transfers. It seemed to the WID staff that these services are 
the basic minimum of personal services. In addition, it is our 
opinion that programs need to provide catheter management in 
order adequately to serve disabled people. The core of domestic 
services is light cleaning, laundry, shopping, and meal 
preparation and clean-up. The combination of these domestic and 
personal services we consider to be a basic attendant service 


program. 


As shown in Table 7, 90 programs (58%) provide both personal 


and domestic services, but 39 of these otherwise comprehensive 


programs do not offer catheterization and thus cannot meet the 


needs of those disabled people who need this service. Twelve 


percent of the programs only provide personal services and 25% 


offer domestic services only. In some states, the only way 


disabled individuals can get the range of attendant services they 



52 


need is by arranging services through separate programs. Eight 
programs (5%) provide short-term services (respite) only. In 
Wisconsin, for example, there is one program, the Respite Care 
Project, that provides short-term personal assistance for people 
of all ages all over the state. 

TABLE 7 
NUMBER AND TYPES OF PROGRAMS IN SAMPLE (n=154) 
Program

Program Type Number Percent 
Attendant with 
Catheterizationa 51 33% 
Attendant without 
Catheterization 39 25% 
Personal Service Only with 
Catheterizationb 11 7% 
Personal Service Only without 
Catheterization 7 5% 
Domestic Services Onlyb 39 25% 
Short-Term (Respite) Onlyd 8 5% 

aAttendant = Personal Service b + Domestic Servicesb 
bPersonal Service = Feeding, Bathing, Dressing, Bowel/ 
Bladder Care, Transfers, Oral Hygiene and Grooming 
CDomestic Services = Light Cleaning, Laundry, Shopping, 
Meal Preparation and Clean-Up 

dRespite = Provision of relief for usual service 
provider (family, attendant, friends) for 
periods from 1 hour to a number of days or 
weeks 

Hours Services Available 

A program may offer a very wide range of services that meet 

the assistance requirements of people with even the most severe 

disabilities, but if the disabled recipient cannot receive those 

services when they are needed, the program is inadequate. 


53 


Program rules often require that providers be employees of home 
health agencies. Often these agencies provide services only from 
9-5, Monday through Friday. This is a fine schedule from the 
point of view of an employee, but from the point of view of 
disabled consumers it is almost totally inadequate. The periods 
of greatest personal assistance need are when one gets up in the 
morning (in time to get to work or other activities) and when one 
goes to bed at night (after one has had an evening of recreation 
or other activities). More domestic services do, of course, fit 
into a 9-5 weekday schedule. It is not unheard of for attendant 
service users to be forced to go to bed at 5 p.m. because 


attendants do not work after that time. 


Only 65% of the programs make personal assistance services 
available 24 hours a day (Table 8). If one adds to this those 
programs that offer services less than 24 hours ,; day (but more 
than 9-5), then 76% of the programs potentially offer services at 
the necessary times. However, this finding must be viewed 
cautiously because often programs weren't strictly 9-5 operations 
but the hours were only somewhat broader, eg. 8:00 - 7:30. In 
addition, many administrators did not know the hours of service 
in every section of the state and tended to give an answer 
describing the general trend. In many states, however, the hours 
are determined by the contract agency and, in less populous 
areas, where home care agencies have no competition, the tendency 


is to restrict hours of service. 




54 
TABLE 8 
HOURS SERVICE AVAILABLE (n=152) 


Programs 
Hours Number Percent 


24 hours/day 101 65% 
Less than 24 hours/day 
(but not strictly 9-5) 32 21% 


Strictly 9-5 19 12% 


TABLE 9 
DAYS SERVICE AVAILABLE (n=153) 


Programs 
Days Number Percent 
Every day 120 77% 


Less than every day, 
more than only weekdays 9 6% 


Weekdays only 24 16% 


TABLE 10 
HOURS AND DAYS OF SERVICE AVAILABILITY (n=143) 


Programs 
Hours and Days Number Percent 


7 days/week, 24 hours/day 101 66% 


7 days/week, 
but less than 24 hours/day 18 12% 


Less than 7 days/week, 
and less than 24 hours/day 24 16% 



55 


Fully 77% of the programs offer service every day (Table 9). 
If one combines hours and days of service, 66% of the programs 
have service available every hour of every day (Table 10). An 
additional 12% have services available every day on more than a 
9-5 basis. 


Maximum Service Amounts Allowed 
There are two ways in which programs expressed the maximum 
service amounts allowed, either in hours or in terms of a maximum 


financial allowance.Fifty-four programs expressed the limit in 
monetary terms which ranged from $60 a month to $1,752. Fifty 
percent of these programs had allowances of less than $838, fifty 
percent had limits above that. An additional 44 programs set no 
maximum monthly allowance, either in terms of hours or money. 
There were 38 programs that give the maximum allowance in terms 
of hours. The hours ranged from 3 to 67 per week, with an 
average of 29 hours. 


In order to clarify the impact of the maximum allowance on 
the consumer, the monthly monetary allowance was divided by the 
average hourly wage for all types of attendants, $4.41, and 
further divided by 4 to get a weekly figure. 14 As Figure 7 
shows, 18% of the programs have limits of "20 hours a week or 
less, and therefore may not serve the needs of an individual with 
a severe disability. 


14 This figure tends to inflate the number of programs which 
provide more than 20 hours/week because the programs with the 
highest financial allowances generally allow for home health aide 
service provision. The average cost to the program for home 
health aides is almost twice the $4.41/hour average. See next 
section for more detail on provider wages. 



Figure 7 
MAXIMUM NUMBER OF SERVICE HOURS 
ALLOWED PER WEEK (n=136) 



57 
Direct Service Providers 


The attendants could be divided into three groups, those who 
were individual providers (IPs), those who worked for contract 
agencies, and those who worked for county or municipal 
governments. The bulk of the programs (76%) utilized attendants 
provided by contract agencies. Fifty percent of the programs 
used individual providers and only 28% used government employees 


(Table 11). Many programs use more than one type of provider 
(Table 12). There are advantages and disadvantages to each type 
of provider. Consequently a program that offers service to a 
wide variety of people needs to provide a choice between 
individual providers and more agency trained and supervised 
contract or government workers. 


TABLE 11 


TYPES OF PROVIDERS UTILIZED BY PROGRAMS 
Programs


 


Number Percent 


Contract Agencies 118 76% 
Individual Providers (IPs) 77 50% 
Local Government Unit Staff 44 28% 


TYPe 


TABLE 12 


PROVIDER TYPE MIX (n=154) 


Programs 
Type of Provider Number Percent 


Contract Agencies Only 54 35% 
Individual Providers Only 33 21% 
IPs and Contract Agencies 24 16% 
IPs, Contract & Govt Staff 20 13% 
Contract Agencies & Govt Staff 20 13% 
Government Staff Only 3 2% 



58 
Individual Providers 


Individual providers (IPs) are the preferred mode of service 
delivery for those who emphasize independent living and are able 
to manage their own personal assistants. Consumers have a far 
greater level of control of IPs. Sixty-two percent of the 77 
programs utilizing IPs allow the consumer to train his or her own 
attendant, 74% allow the consumer to hire and fire their 
attendants, and a much smaller 40% allow direct payment to the 
disabled consumer who then pays his or her attendant. 


Consumer control is a controversial issue because it raises 
the question of who is the employer, the governmental agency or 
the disabled individual. Many state administrators are concerned 
about the liability issue and the level of attendant training. 
Some are calling for certification of all attendants after 
completion of a formal training program. Consumers tend to 
oppose formal training and certification requirements because 
trained attendants often resist taking directions from the 
disabled client and - subtly or not so subtly - undermine 
independence. Only 64% of the programs using IPs require the 
disabled consumer to train the attendant (Table 13). In the 
survey we did not inquire whether programs required IPs to be 
licensed or certified in some way. While this seems to be an 
issue of growing concern, one should bear in mind that in the 
entire 27-year history of the California IHSS no one has ever 
sued the state for negligence related to an independent 
provider.15 


15 See Zukas, H. (1986) for a fuller discussion of the 
liability issue. 



59 
TABLE 13 


LEVEL OF TRAINING REQUIRED 
FOR INDIVIDUAL PROVIDERS(n=77) 


Programs


 


Type of TrainingNumber Percent 


Trained by Client/Consumer 48 62% 
Graduate of Agency Training Program 12 16% 


Home Health Aide 5 6% 
Licensed Practical Nurse 4 5% 
Other 22 29% 

Fifty-five out of 77 administrators questioned replied that 
their programs had regulations regarding IPs. In general the 
regulations were very minimal. They required such things as the 
individual must receive some sort of formal training (n=22) 
and/or be over 18 years old (n=27); others said that the 
regulations specify that the consumer must be able to supervise 
the attendant. Twenty-six percent of the programs said the only 
requirement is that the consumer request an individual provider. 
After that, the consumer is responsible for setting all limits. 


Another controversial issue pertaining to individual 
providers is whether or not to allow relatives to be paid to be 
independent providers. Of the 77 programs that allow for IPs, 41 
permit relatives to be paid providers under some circumstances. 
Table 14 lists the requirements regarding relatives that were 
mentioned by more than one administrator. Some programs seem to 
be somewhat flexible, depending on the situation. For example, 
relatives may be paid if the disabled individual needs 
specialized services that only family will or can provide or if 
the disabled individual lives in a remote area where no one is 



60 


available. Most of the other programs which have regulations 
regarding relatives seem to have guidelines based more on which 
relatives they think should be expected to provide services 
without pay and which should not - a rather arbitrary exercise as 
can be seen by the variety of different guidelines listed. 


TABLE 14 


CIRCUMSTANCES IN WHICH PROGRAMS ALLOW 
RELATIVES TO BE PAID ATTENDANTS (n=41) 


Reason Number Percent 
No one else is capable or available 13 31% 
The relative is not legally responsible 10 24% 


for the disabled individual 
Relative is prevented from working outside 9 22% 
the home because no other attendant 


is available 
Relative does not reside in the same house 7 17% 
Relative is not the spouse 7 17% 
Any relative is okay 6 15% 
No spouse, parent, child 4 10% 


or son/daughter-in-law 
Niece, nephew, cousin okay 2 5% 
No blood relatives or spouses 2 5% 


Contract Agency Attendants 


There are 118 programs which contract with outside agencies 
to provide personal assistants for their clients. Almost all of 
these programs contract with certified Home Health Agencies 
(n=102) and some (n=58) contracted with local government units 
also. Eighty-seven percent contracted with non-profit agencies 



61 
and 68% also contracted with for-profit agencies. 


(-1 The average hourly reimbursement rate to the contract 
agencies was $8.32/hour with a range from a low of $3.50/hour to 
a high of $19.00/hour. Included in this range are wages for home 
health aides, chore workers and housekeepers. Every attempt was 
made not to exclude from these figures the reimbursement for 
allied health personnel such as registered nurses and the various 
types of therapists. The average hourly pay to the contract 
agency workers was $4.71/hour with a range from $3.00/hour to 
$10.00/hour. The average hourly difference between the 
reimbursement rate and the attendant's wages was $4.08 (range of 
0-$14.38). This means that for those programs for which this 
information was available (n=52 or 44%), for every hour the 
attendant goes out, the contract agencies receive on the average 
$4.08 - almost a 100% mark-up. 


Government Agency Attendants 


Only 44 programs use attendants who are direct employees of 
the state or of local government units. One suspects that the 
number will further decline because current federal government 
policy greatly encourages private enterprise taking over service 
functions of government at all levels. Government workers earn, 
on the average, $4.77. 


Comparison of Provider Types 
In order to understand better the advantages and dis


advantages of the types of providers, it is instructive to 
compare them on two dimensions, degree of consumer control 
allowed and attendant wages and benefits. Government workers 



62 


receive not only the highest wages but vastly more benefits, 
almost 5 apiece (Table 15). Wages for Contract Agency Workers 
were only slightly lower, on the average, but their benefit 
package is decidedly inferior. On the average, contract agency 
attendants get about 2 fringe benefits and they are most often 
social security and worker's compensation. Individual providers 
receive the lowest pay, very close to minimum wage, and very few, 
if any, benefits.16 


TABLE 15 
NUMBER OF BENEFITS AND AVERAGE HOURLY WAGE BY PROVIDER TYPEa 


Benefits 
Average 
Hourly Average Benefits 
Provider Type Wage Number Rangea Mode 

Government Workers $4.77 4.7 0-7 7 
(n=30) 


Contract Agency Workers $4.71 1.7 0-7 0 
(n=62) 


Individual Providers $3.74 .7 0-3 0 
(n=60) 


aIncludes 1) vacation pay, 2) sick leave, 3) health insurance, 4) 
worker's compensation, 5) Social Security, 6) unemployment 


compensation and 7) transportation costs. 


16 The accuracy of these data is somewhat suspect because 
administrators tend not to be the people who know this 
information in detail. Even though they received questionnaires 
in advance, many did not take the time to check with people in 
their agencies who could accurately answer the wage/benefit 
questions. Nevertheless, we are confident results reflect the 
general trend. Government workers would be expected to receive 
the highest wages and benefits and individual providers would 
definitely receive the lowest. 



63 
In terms of consumer control, there are advantages and disadvantages 
to each type of provider depending on the user's circumstances. 
The degree of consumer control over the attendant is a major 
concern for the Independent Living Movement. Without control, the 
consumer is dependent upon the schedule, desires and agenda of the 
attendant - hardly a situation which fosters independence. Programs 
using IPs allow for the most consumer control (Table 16). 
Consequently, individual providers are a major attraction for 
independent living adherents. However, users of IPs must have the 
ability to manage their own attendants. Another drawback is that IP's 
tend to be paid at or very close to the minimum wage, receive very 
few, if any, benefits, and/ as a consequence, have a very high 
turnover rate. 


TABLE 16 


NUMBER OF PROGRAMS ALLOWING CONSUMERS 
TO TRAIN, PAY, AND HIRE AND FIRE ATTENDANTS 


Type of Provider Train Hire/Fire Pay 



Individual Providers (n=77) 48 62% 57 74% 31 40% 
Contract Agencies (n=118) 15 13% 5 4% 1 1% 
Government Workers (n=44) 4 9% 4 9% 0 0% 


Contract agency workers such as home health aides and 
homemakers tend to be paid somewhat better because they are 
trained by the agency or other training programs. Trained 
attendants are appropriate for disabled clients who are unable to 
manage totally their personal assistant. However, a client's 
independence can be undermined by a contract worker who takes too 



64 


much responsibility for what, when, where and how services get 
provided. Government employees, who tend to be utilized only 
when no private contract agency exists in an area, have the 
highest pay and benefits, but often they also discourage 
independence in the people they serve. 


There are a number of important issues pertaining to who is 
the personal assistance service provider and the conditions of 
employment which need to be noted here. We did not inquire about 
unionization, but it is our impression that there are few 
unionized attendants in the U.S., except perhaps those who work 
for local or state governments. 17 Unionization would improve the 
working conditions and benefits for attendants. 


This project did not explore the extent to which disabled 
people rely on unpaid providers such as family members and 
friends. That issue must wait for a consumer survey. 


Determination of Services Allowed 


We inquired as to who makes the decisions regarding types of 
services and hours that a consumer can receive from a program and 
the basis upon which those decisions are made. Functional 
ability and services needed are the primary indicators used for 
evaluating the client (Table 17). 


17 In personal Communication with Kirk Adams, Senior 
International Organizer, Service Employees International Union, 
July 21, 1986, we learned that SEIU has organized 2,000 
homemakers in Boston (out of a total of 15,000 in Massachusetts, 
2,000 in Chicago, 500 in San Francisco and 20,000 state workers 
in New York City. 



65 


TABLE 17 


BASIS FIR SERVICE EVALUATION 


Program 
Criteria Number Percent 


Services Needed 136 90% 


Functional Ability 119 77% 


Physician's Recommendation 83 53% 


Accessibility of Environment 76 49% 


Cost of Services Less Than 
Institutional Care 68 44% 


Nursing Home Eligibility 31 20% 


Service professionals, especially case managers, were found 


to be the primary decision makers as to hours and types of 


service to be provided. Users do not have much voice in these 


decisions (Table 18). 


TABLE 18 


THOSE WHO DECIDE ON TYPES OF SERVICE & HOURS 
(n=154) 


Program 
Decision Makers Number Percent 


Case Manager 46 30% 
Case Manager & Social Worker 15 10% 
Program Director 18 12% 
Social Worker 10 7% 
User 9 6% 
Registered Nurse with/ 


without Other Professional 8 5% 
Contract Agency with/ 


without Case Manager 8 5% 
Medical Assistance 6 5% 
Independent Living Program 5 3% 
Registered Nurse or Doctor 5 3% 
User & ILP or Social Worker 2 1% 
Other 22 14% 



66 


Medical Supervision 


Nearly a quarter of the programs (n=37) require medical 
supervision by an R.N. or other health professional for all the 
program's services. A third of the programs (n=51) require 
medical supervision for some of the services, usually the more 
medically oriented ones, and 40% (n=61) of the programs require 
no medical supervision. Of those programs requiring supervision 
for some or all of the services, 34 (39%) require monthly 
supervision, 15 (17%) require bi-monthly supervision, 9 (10%) 
require quarterly supervision, and 12 (14%) require supervision 
from between every six months to once a year. 


In this and the previous chapter we have taken a largely 
descriptive approach, breaking attendant services programs down 
into common structural and programmatic components and describing 
in turn how each of these components is addressed across the 
country. We will now shift our perspective and consider 
individual programs in their entirety in order to ascertain the 
degree to which they promote independent living. 



67 


CHAPTER V 


PROGRAM CONFORMITY TO THE INDEPENDENT LIVING MODEL 


DeJong and Wenker (1979), in their seminal work on personal 
assistance services, described the attendant programs in this 
country as lying on a continuum defined by the medical model on 
one end and the Independent Living Model on the other. The 
Medical Model can be seen most purely in programs aimed at 
serving people with acute conditions which require short term 


"care". In these programs a physician's plan of treatment is 
required along with periodic nursing supervision. Attendants are 
recruited, trained and supervised by the contract agency. The 
attendant is ultimately accountable to the physician and the 
recipient essentially plays the role of patient. Programs 
directed at people with short term "care" needs were not included 
in the WID survey. We did, however, include programs that served 
people with chronic conditions on a long term basis that operated 
very much on the terms described above. 


The other end of the continuum DeJong describes is the 
Independent Living Model in which the attendant is managed by the 
user. No medical supervision is required. Attendants are 
recruited by the user, paid by the user and accountable to the 
user. 


In order to see where the programs surveyed fit on the 
continuum, we gave each program a score from zero to ten based on 
a count of how many of the following ten characteristics of the 
pure Independent Living Model the program incorporated. These 
characteristics are: 



68 


1. No medical supervision is required; 
2. The service provided is attendant service with 
catheterization, I.e. services offered include personal 
maintenance and hygiene, mobility and household assistance. 
3. The maximum service limit exceeds 20 hours per week; 
4. Service is available 24 hours a day, seven days a week; 
5. The income limit is greater than 150% of the poverty 
levell8; 
6. Individual Providers can be utilized by the consumer; 
7. The consumer hires and fires the attendant; 
8. The consumer pays the attendant; 
9. The consumer trains the attendant. 
10. The consumer participates in deciding on the number of 
hours and type of service he or she requires. 
The bulk of the programs scored low on the degree of 
Independent Living orientation (Figure 8). However, as one might 
expect, the programs are indeed spread across the continuum. And 
there are in fact a few programs that do conform to the pure 
independent living type. 


18 Actually setting the limit at more than 150% of the 
poverty level ($7,875) is generous. An income of $7,875 is very 
low to enable a single person to meet food, shelter, transportation 
and clothing costs and still be able to pay an 
attendant. 



Figure 8 
DEGREE TO WHICH PROGRAMS CONFORM TO 
INDEPENDENT LIVING MODEL (n=147) 


70 


The programs that scored 0, 1, 2, or 3, the lowest 
independent living scores, served 385,445 clients or 49% of all 
those being served (Table 19). Fewer clients (210,436 or 27%) 
were served in the most independent living-type programs which 
scored 7, 8, 9, or 10 on the independent living scale.19 And 
somewhat fewer (192,751 or 24%) were served by programs scoring 
in the middle range. 


TABLE 19 


NUMBER OF USERS SERVED BY ATTENDANT SERVICE PROGRAMS 
AT VARIOUS LEVELS OF CONFORMITY TO 
THE INDEPENDENT LIVING MODELa (n=127) 


Independent Total Number Number of Programs 
Livina Score of User Reporting 


Low 0 47,487 3 
1 87,719 11 
2 143,811 28 
3 106,428 19 

4 74,132 14 
5 64,195 9 
6 54,424 15 


7 172,984 14 


8 25,837 5 


9 11,065 8 
High 10 550 1 


aDoes not include programs that only provide 
respite 


19 Note that California's IHSS program, which served 106,138 
people in FY1984, is included among the programs scoring "7" on 
the Independent Living Model. The 550 users in the program with 
the highest score represent a projection, not the precise number 
served. 



71 


There seems to be a marked tendency for the expenditure per 
client to increase (but not necessarily per hour) as the programs 
become more consumer or independent living oriented (Table 20). 
This finding needs further exploration, however. It is quite 
likely that the more consumer oriented programs serve the most 
severely disabled people. Also, by definition, the independent 
living model programs provide the greatest number of hours of 
service because programs got an extra point for offering 20 or 
more hours of service per week on the independent living score.2° 
Finally, the programs with the lowest independent living score 
are most likely to be those offering household assistance only. 


TABLE 20 


EXPENDITURE PER USER BY PROGRAMS 
AT VARIOUS LEVELS OF CONFORMITY TO THE 
INDEPENDENT LIVING MODEL (n=119) 


Independent 
Living Score 
Expenditure 
per User 
Number of Programs 
Reporting 
Low 0 $ 811 3 
1 570 11 
2 2,853 28 
3 1,916 16 

4 3,922 12 
5 4,622 9 
6 2,441 13 


 


7 3,729 13


 


8 2,403 5


 


9 3,079 8


 


High 10 7,636 1 


20 Cost per hour of service would have been a more desirable 
measure for comparison since it would have eliminated the need to 
take account of these variab]es. However, not enough programs 


were able to provide these figures for the current survey. 



72 


Figures 9, 10, 11 and 12 provide some evidence to support 
this explanation. The Social Services Block Grant and Medicaid-
funded programs tend to have the lowest independent living or 
consumer orientation, whereas the state-funded programs have the 
highest. 


Small states are more likely to have independent living-
oriented programs than are large states (Table 21). Half of the 
states have programs that score 7 or better on the independent 
living orientation scale. These programs, their independent 
living model scores and the states where they are located are 
detailed in Table 22. 



73 

Figure 9 
DEGREE TO WHICH TITLE XIX FUNDED 
PROGRAMS CONFORM TO INDEPENDENT 
LIVING MODEL (n=48) 


27% 

3 4 5 6 7 10 
Low Independent Living Score High 

Figure 10 
DEGREE TO WHICH TITLE III FUNDED 
PROGRAMS CONFORM TO INDEPENDENT 
LIVING MODEL (n=11) 


40 

35 

30 

25 

20 
15 
10 

 

3 4 5 6 7 10 


LowIndependent Living ScoreHigh 


74 

Figure 11 
DEGREE TO WHICH SSBG FUNDED 
PROGRAMS CONFORM TO INDEPENDENT 
LIVING MODEL (n=29) 

40 

35% 

35 
30 


15 
10 
5 


3 4 5 6 7 
Low Independent Living Score 

Figure 12 
DEGREE TO WHICH TOTALLY STATE AND/OR 
LOCALLY FUNDED PROGRAMS CONFORM TO 
INDEPENDENT LIVING MODEL (n=16) 



75 
TABLE 21 
DEGREE OF CONFORMITY TO INDEPENDENT LIVING MODEL BY STATE (n=147) 


Number of Programs by Degree of Conformity to Independent Living Model 


Low High 
STATE 0 12 34567 8 9 10 
Alabama 1 1 1 
Alaska 1 2 
Arizona 1 
Arkansas 1 1 
California 1 1 1 1 
Colorado 1 
Connecticut 1 1 1 
Delaware 2 
Florida 311 
Georgia 1 
Hawaii 11 1 
Idaho 11 1 
Illinois 2 
Indiana 31 
Iowa1 1 
Kansas 11 1 1 
Kentucky 1 1 1 
Louisiana 
Maine 1 112 
Maryland 1 1 1 
Massachusetts 2 1 2 
Michigan 1 1 1 
Minnesota' 1 
Mississippi 1 
Missouri 2 1 2 1 
Montana 1 1 1 
Nebraska 1 1 1 
Nevada 12 1 




76 


Number of Programs by Degree of Conformity to Independent Living Model 
Low High 
STATE 012345678910 
New Hampshire 1 2 1 
New Jersey 3 
New Mexico 1 2 1 1 
New York 1 1 2 
North Carolina 1 1 
North Dakota 1 
Ohio 1111 1 
Oklahoma 2 
Oregon 1 1 
Pennsylvania 1 1 1 
Rhode Island 2 1 1 
South Carolina 2 
South Dakota 1 1 1 
Tennessee 1 
Texas 12 1 
Utah 11 1 
Vermont 1 1 
Virginia 2 
Washington 1 1 
West Virginia 1 
Wisconsin 1 1 1 2 
Wyoming 1 
Dist.of Columbia 1 1 



77 
TABLE 22 
PROGRAMS WITH THE HIGHEST INDEPENDENT LIVING ORIENTATION 


Rating State 
10 Pennsylvania 
9 Maine 
Maine 
Missouri 
Nevada 
Ohio 
South Dakota 
Utah 
Vermont 
Washington 
8 Kentucky 
Maine 
Maryland 
Michigan 
Mississippi 
Nebraska 
New Hampshire 
Pennsylvania 
South Dakota 
7 Alabama 
Arkansas 
California 
Connecticut 
Connecticut 
Illinois 
Illinois 
Maine 
Massachusetts 
Massachusetts 
North Carolina 
Oregon 
Wisconsin 
Wisconsin 

Program Name 


Attendant Care Demonstration 


Home and Community-Based Waiver 
Homebased Care Program 
Personal Care Assistance Program 
Attendant Care Program 
Personal Care Assistance Program 
Attendant Care Program 
Personal Attendant Care 
Participant Directed Attendant Care 
Chore Services 


Personal Care Attendant Program 
Attendants for Employed People 
Attendant Care Program 
Home Help 
Independent Living Attendant Care 


Pilot Program 
Disabled Persons/Family Support 
Adult Services 
Attendant Care Services for Older 


Adults 
Attendant Care 


Optional Supplement of SSI 
Spinal Cord Commission 
In-Home Supportive Services Program 
Essential Services Program 
Personal Care Assistance Program 
Community Care Program 
Home Services Program 
Attendants for Unemployed People 
Independent Living Personal Care 
Personal Care Program 
Attendant Care 
In-Home Services/ 


Project Independence 
Supportive Homecare Program 
Family Support Program 






78 


CHAPTER VI 


PROGRAM UTILIZATION AND EXPENDITURES 


The previous three chapters have described the structure of 
the attendant service programs in the United States as well as 
their development, administration, funding sources and degree of 
conformity to the Independent Living model. These chapters were 
intended to present the rules, regulations and requirements of 
these programs. In this chapter we propose to carry the process 
one step further and discuss who actually gets service from these 
programs and how much it costs programs to provide that service. 


Service Utilization 


The data in this survey indicate that approximately 850,000 
people in the U.S. received publicly-funded attendant services 
through 135 programs. 21 The state with the greatest number of 
attendant service consumers in FY1984 was California, with 


150,805 people (or 0.64% of the state's population) (Table 23) 


(U.S. Bureau of the Census, 1986). New York had the second 
largest number of attendant service users, 124,808 people (0.71% 
of New York's population). The proportion of the population 
receiving attendant services in any given state ranged from 0.01% 
to 0.87%. The total number of users represents 0.36% of the 
population of the United States. If the users in only three 
states, New York, California and Massachusetts, are excluded, 
21 This figure is an estimate because: a) 16 programs could 
not report their caseload, b) there are an additional 19 programs 
we could not interview, c) 9 programs were eliminated from client 
and expenditure figures because the administrator could not break 
out those who received attendant services from those who got 
home-delivered meals, transportation and medical services. 
Figures from two programs received late were added into the data 
reported in this chapter. 



79 


this figure drops to 0.22%. Administrators of 44 programs 
estimated that at least 46,472 people in their states left or 
were kept out of institutions as a result of their programs. 
Twenty-two administrators estimated that 8,383 additional people 
could leave institutions if their programs were expanded. Both 
these figures would be much higher if comparable statistics from 
the other personal assistance program administrators were 


available. This issue deserves further research. 



80 
TABLE 23 
COMPARISON ACROSS STATES 
OF EXPENDITURES AND TOTAL CLIENTS 
OF ATTENDANT SERVICE PROGRAMSa 
Total Number Percentage of 1985 Total 
of Attendant State Population Expenditures 
State Service Clients Estimate (in thousands) 
(n=135) (n=140) 
Alabama 24,016 .62% $ 17,723 
Alaskab, d 1,193 .30% 2,200 
Arizona 1,500 .06% 1,696 
Arkansas 5,225 .23% 10,285 
California 150,805 .64% 345,445 
Coloradog 8,867 .31% 14,719 
Connecticut 10,816 .35% 23,108 
Delaware 968 .16% 1,485 
Floridab, f 22,858 .24% 21,386 
Georgiaa 6,747 .12% 7,612 
Hawaii 1,709 .18% 2,875 
Idaho 4,283 .45% 1,177 
Illinois 16,301 .14% 33,734 
Indiana 21,808 .40% 13,391 
Iowa 12,605 .43% 7,849 
Kansasb 9,057 .38% 6,137 
Kentucky 7,329 .20% 6,065 
Louisianac 
Maine 6,013 .53% 4,804 
Maryland 5,082 .12% 11,441 
Massachusettsb, d 46,374 .81% 90,467 
Michigan 43,933 .47% 69,653 
Minnesotae 35,300 .87% 5,800 
Mississippi 400 .02% 372 
Missouri 31,209 .63% 14,659 
Montana 6,248 .79% 1,969 
Nebraska 5,429 .35% 3,286 
Nevada 1,071 .13% 1,092 


81 
Total Number Percentage of 1985 Total 


of Attendant State Population Expenditures 
State Service Clients Estimate (in thousands) 
(n=135) (n=140) 
New Hampshire 3,893 .42% 3,087 
New Jersey 1,850 .03% 3,809 
New Mexico 2,200 .17% 7,384 
New York 124,808 .71% 504,361 
North Carolina 626 .01% 1,657 
North Dakota 59 .01% 192 
Ohio 26,359 .24% 46,942 
Oklahoma 9,130 .30% 35,395 
Oregon 10,041 .38% 15,330 
Pennsylvania 59,995 .51% 22,338 
Rhode Island 1,578 .17% 3,754 
South Carolina 9,690 .31% 14,501 
South Dakota 4,020 .58% 1,910 
Tennesseeb 875 
Texas 68,880 .48% 108,288 
Utah 522 .04% 1,048 
Vermont 362 .07% 611 
Virginia 5,000 .09% 14,191 
Washington 10,167 .25% 22,735 
West Virginiaa 5,177 .27% 4,814 
Wisconsin 15,600 .33% 25,953 
Wyomingc 
Dist.of Columbia 3,285 .55% 8,853 

TOTAL 850,388 $1,568,458 


Data added from two additional programs from questionnaires received 
late from Georgia and West Virginia. 
Number does not include Title III recipieW:s because administrator 
unable to isolate attendant services from adult day care, home-
delivered meals, counseling and other Title III services. 
No data available. 




Alaska & Massachusetts figures do not include HHA programs. Decided 
they were strictly short-term. 




Minnesota does not include Personal Care Services figures.




Florida does not include elderly waiver. 
 Colorado does not include HHA program/could not separate ILP-
delivered services from regular Medicaid program. 



82 


One hundred and twenty-five of the program administrators 
were able to report on the disabilities of the people they serve 
(Table 24). Almost 50% of the programs served people with all 
types of disabilities. 

TABLE 24 

NUMBER AND PERCENTAGE OF PROGRAMS 
SERVING PEOPLE WITH VARIOUS DISABILITIES (n=125) 


Programs 
Type of Disability Number Percent 

All Types 57 46% 
Physical Disability, Brain Injury 35 28% 
Physical Disability Only 16 13% 
Physical Disability, Brain Injury, 

Mental Disability 10 8% 
Physical Disability, Brain Injury, 

Intellectual Disability 5 4% 
Physical Disability, Mental Disability 1 1% 
Physical Disability, 

Intellectual Disability 1 1% 

Data from 90 programs indicate that users of attendant 
services are largely older people (Table 25). 

TABLE 25 
AGE GROUPS SERVED (n=90) 

Age Group Number Percent 
Less Than 60 or 65 142,562 23% 
Greater Than 60 or 65 476,851 77% 


83 
As the make-up of the aging population might lead one to 
expect, seventy percent of recipients are women. Eighty-one 


 
percent are white, 12% Black, 5% Hispanic, with less than 2% 
Native American or Asian. These figures reflect the racial 
composition of the population as a whole, but not necessarily of 
the disabled population, since a disproportionately high 
incidence of disability has been found among black people (Bowe, 
1985). 


Expenditures 


Based on reports from 140 programs, total expenditures for 
all attendant service related programs were approximately 
$1,568,458,000 ($1.6 billion) in FY1984. 22 The range of 
expenditures per program was from a low of $2,000 (the Indiana 
Medicaid Waiver providing household assistance, short-term 
personal assistance (respite) and case management to 10 people) 
to a high of $458,200,000 per year (the New York Personal Care 
Services Program serving 52,400 people). The average per client 
expenditure per year was $2,862, with the median being $1,421. 


The state with the highest expenditure was New York ($504m), 
followed by California ($345m), and Texas ($108m) (Table 23). 
While New York spends the most, California serves the largest 


22 Expenditures for FY1985 were used here in 33 cases for 
which 1984 data were unavailable. FY1983 figures were used for 4 
programs. Also included are expenditures on 28 programs which 
include more than attendant services because attendant services 
could not be isolated. However, expenditures from 6 Title III 
programs are not included, amounting to $436 million, because 
they included large numbers of people receiving home delivered 
meals and adult day care. 



84 


number of people. This seeming anomaly is explained by the fact 
that New York relies heavily on more costly "personal care 
workers" as providers, whereas in California people needing more 
than 20 hours per week of personal assistance are permitted to 
hire less costly individual providers. 


The distribution of expenditures among the various state and 
federal funding sources is presented in Table 26. Expenditures 
on attendant services are divided almost equally between federal 
and non-federal sources. States currently bear 40% of the 
expenditures on attendant services, either as the major funding 
source of a program or as a match with federal funds. Medicaid, 
the Social Service Community Block Grant Program and the states 
together provide 87% of the monies available for attendant 
services. 


TABLE 26 
TOTAL EXPENDITURES ON ATTENDANT SERVICES 
BY FUNDING SOURCE (n=129) 


Funding Source 
TOTAL FEDERAL 814,404,000 52% 
Title XIX 
Regular Program 384,740,000 25% 
Waivers 19,294,000 1% 
Title XX 320,703,000 21% 
Title III 37,281,000 2% 
Title VIIA 14,000 0% 
Other Federal 52,372,000 3% 
TOTAL NON-FEDERAL 723,375,000 48% 
State 617,732,000 40% 
County/Municipal 84,438,000 6% 
Other 13,004,000 1% 
Client Fees 7,166,000 0% 
Private 1,035,000 0% 
GRAND TOTAL 1,537,779,000 100% 


85 


Expenditures From Programs Not in WID Survey 


The WID survey did not include programs funded by other 
sources such as the Veterans' Administration Aid and Attendance 
Allowance and Developmental Disabilities and Mental Health 
programs. In addition, of course, a large proportion of 
attendant services are either paid for by the user or provided 
without pay by volunteers. 23 Each of these will be discussed. 


In 1984, the Veterans' Administration paid 8,493 people 
$101,036,520 in "Aid and Attendance Allowances" in addition to 
their disability pension. Of these, 6,860 received $906 per 
month. The remaining 1,633 people, deemed to be at risk of 
institutionalization, received $1,350 per month (McCarthy, 1985). 


Currently, both Developmental Disability and Mental Health 
Services funds are being utilized to maintain individuals outside 
of institutions. Further investigation needs to be done to 
determine the extent of separately funded and administered 
attendant services available to these two populations. 


Many individuals receive attendant services from family and 
friends free of charge. Still others pay for attendants on their 
own without public assistance of any kind. Again, the extent to 
which this occurs and the circumstances under which it occurs are 
major questions for future research. 


If one combines the $1.6 billion expended by the programs 


surveyed by WID with the $.1 billion expended by the VA, then it 


appears that 1984 expenditures on attendant services amounted to 


23 The omission of private health care insurers is not an 
oversight. Few health insurance policies offer even a minimal 
amount of home health benefits; none includes long-term attendant 
services (Alpha 1984). 



86 
at least $1.7 billion dollars and reached at least 859,000 
people. 





87 
CHAPTER VII 
AVAILABILITY OF SERVICES ACROSS THE UNITED STATES 


This chapter compares the availability of attendant services 
across the fifty states and the District of Columbia. Nine 
states - Alaska, Delaware, Georgia, Louisiana, Minnesota, 
Montana, Tennessee, Virginia, and Wyoming - have no comprehensive 
attendant services program (that is, no program that combines 
personal maintenance and hygiene, mobility, and household 
assistance services) serving any of the three basic age groups-
children, working age adults or older adults (Table 27). In 
addition, there are four states (Arkansas, Colorado, North Dakota 
and West Virginia) that offer comprehensive attendant services to 
some age groups but not all. In Colorado and Delaware, however, 
the lack of a combined service program is mitigated by the 
existence of separate household and personal maintenance and 
hygiene programs. In other words, in 8 states, the full range of 
publicly-funded attendant services are not available for people 
with disabilities of any age; and in 3 states services are 
available for some people but not others, depending on age. 


In 39 states plus the District of Columbia, then, programs 
exist that offer attendant services to all age groups. We emphasize 
that the finding here is only that such programs exist; no 
inferences are to be drawn as to their adequacy in terms of 
either quality or number served. In addition, these programs 
differ widely in their capacity to meet the needs of disabled 
people in their jurisdiction because of marked variations in eligibility 
criteria, services offered, maximum allowances, other 
rules and regulations, and, most important, funding constraints. 



TABLE 27 

NUMBER OF PROGRAMS PER STATE OFFERING 
VARIOUS TYPES OF PERSONAL ASSISTANCE BY AGES SERVED 

State Attendant Personal Maintenance/ Personal Household Only Respite 
Hygiene and Household Maintenance/ 
Separately Hygiene Only 
Child Adult Aged Child Adult Aged Child Adult Aged Child Adult Aged Child Adult Aged 
Alabama 3 3 2 1 1 1 
Alaskaa 1 1 2 1 1 2 
Arizona 1 1 1 
Arkansas 1 1 1 1 1 I I 
California 2 2 3 1 1 1 1 1 3. 
Colorado 1 1 1. 1 1 2 2 
Connecticut 1 2 2 3 3 2 1 2 3 
Delaware 2 2 2 
Florida 1 1 2 2 2 1 
Georgia 1 1 1 1 1 1 
Hawaii 1 1 1 1 2 1 1 l 
Idaho 2 2 2 1 2 2 3 
Illinois 1 1 2 1 1 1 
Indiana 2 2 2 2 I 1 1 3 
Iowa 2 2 2 2 2 2 
Kansas 1 1 1 3 3 1 2 
Kentucky 1 2 3 1 2 3 
Louisiana 
Maine 5 5 5 1 2 2 
Maryland 3 3 3 2 3 2 
Massachusetts 2 4 3 1 1 1 1 2 2 
Michigan 2 1 2 1 1 
Minnesotab 1 1 1 
Mississippi 
Missouri 
1 
2 
1 
2 
1 
3 2 3 1 
1 
1 2 
Montanab 2 2 3 1 1 1 
Nebraska 1 1 1 2 2 1 1 1 1 
Nevada 1 1 1 2 3 1 1 1 1 
New Hampshire 2 2 2 1 2 2 1 2 2 
New Jersey 3 3 3 1 2 2 


State Attendant Personal Maintenance/ Personal Household Only Respite 
Hygiene and Household Maintenance/ 
Separately Hygiene Only 


Child Adult Aged Child Adult Aged Child Adult Aged Child Adult Aged Child Adult Aged 


22311 1


New Mexico 1 2 2 
New York 3 3 3 


1 1324 


11 1


North Carolina 2 2 2 


North Dakota 1 1 
3 34


Ohio 4 4 5 


Oklahoma 1 1 1 111 1 1 1 
Oregon 1 2 2 1 1 1 
Pennsylvania 2 2 2 1 1 
Rhode Island 1 2 


2 111111 


1 22


South Carolina 1 2 2 


South Dakota 1 2 2 1 1 
Tennessee OD


11 


Texas 3 4 4 1 23 kID 
Utah 2 2 2 1 1 133 
Vermont 1 1 1 1 11 111 
22 11 
Virginiab 
Washington 1 2 2 1 1 
West Virginiab 1 1 1 1 1 1 
Wisconsin 3 2 2 1 1 


1 433 


Wyoming 1 1 


1 1111 1


Dist.of Columbia 1 1 1 


Alaska had 9 people receiving "personal care" services as 
exceptions to the General Medical Relief Program. This is 
not reflected in the table, and the program no longer 
exists. 
b Minnesota, Montana, Virginia and West Virginia have 
somewhat better services than the table suggests because 
the programs listed as purely household assistance actually 
have "personal care" components, but they do not meet our 
criteria for full personal maintenance/hygiene services. 



90 
The extent of availability of short-term (respite) services 
is encouraging but also must be interpreted with caution. Six 
states offer no short-term services for any age group: Arizona, 
Delaware, Louisiana, Mississippi, North and South Dakota (Table 
27). Six states offer no short-term services for disabled 
children: Florida, Indiana, Kansas, Virginia, Washington and 
West Virginia. Four states offer no short-term services to 
children or working age adults: Minnesota, Pennsylvania, 
Tennessee or Wyoming. And two states, Missouri and Michigan, do 
not have short-term services available for disabled working age 
adults. Even though there are 34 states with short-term services 
available for all age groups, it must be emphasized that the 
quality and quantity of the short-term services available is not 
equivalent across these programs. Programs range from providing 
24-hour/day services for a week or two to merely providing oneto 
two-hours of services. Some require the individual who is 
disabled to move into a hospital or institution while family 
members or regular attendants are free to go wherever they like. 
Other programs provide the services in the disabled person's 
home.

91 


CHAPTER VIII 


NEED VS. ADEQUACY OF THE SYSTEM TO MEET THAT NEED 


Estimating the number of people in the United States who 


could use personal assistance services is a very difficult 


task 24 . Three comparatively recent studies have attempted to 


address the issue. 25 One of these - the Home Care Supplement to 


the 1979-1980 National Health Interview Survey (NHIS) is used 


as the basis for discussion here because it was the only study 


that collected data nationwide. In addition, it includes all age 


groups, was conducted fairly recently and has the most 


conservative estimates. 


Conducted by the U.S. Bureau of the Census, the NHIS 


involved interviewing a sample of civilian, non-institutionalized 


people in the U.S. over a period of two years. Respondents were 


asked whether they received or needed the assistance of another 


person in performing seven basic physical activities: walking, 


going outside, bathing, dressing, using the toilet, getting in or 


24 See DeJong, G. and Sager, A. (1977) for a fuller 
discussion of the problems of need estimation from the various 
existing studies. 


25 Connell, Vagnoni and Vafeas (1984, p. 41) conducted a 


random sample telephone survey to estimate the total number of 


users of both personal and domestic services in Pennsylvania. 


Results showed that 1% of Pennsylvanians between the ages of 18 


and 64 and 5.76% of those over 65 used assistance from another 


person on either a weekly or daily basis. DeJong and Sager 


(1977, p. 40) prepared an estimate of the number of people in 


Massachusetts needing some help from another person with personal 


care, on an intermittent or steady basis, based on previous 


national surveys as well as a 1972 study in Ohio and the 1974-75 


Branch-Fowler Survey of the elderly and chronically disabled in 


Massachusetts. DeJong and Sager estimate that in Massachusetts, 


1.1% of children, 1% of working age adults and 17.7% of older 


people require some help, while the number of adults of all ages 


requiring assistance on a regular basis is less than half of 


these figures. 



92 


out of bed or chair, and eating. The percentage of people 
needing help with one or more physical activities was: 0.23% of 
children under the age of 17, 0.67% of adults between the ages of 
17 and 64, and 6.67% of adults over 65 years old (Czajka, 1984, 


p. 39). In all likelihood these figures understate the number of 
people needing attendant services. They do not include people 
who need assistance with household maintenance tasks such as 
housework, meal preparation and shopping. 26 They also do not 
include the institutional and nursing home population who could 
live in the community if adequate personal assistance were 
available. 
Table 28 compares the NHIS estimates of need with the WID 
data on the number of people being served. This comparison 
indicates that 74,473 children who need personal assistance 
services do not get them from the public programs surveyed for 
this study. 27 There are an estimated 758,938 working-age adults 
and 903,202 people 65 or older who need assistance but do not get 
it from public programs surveyed here. 28 All told, then, there 
are an estimated 2,134,111 non-institutionalized people needing 
personal assistance who do not receive it from the publicly


26 The survey did ask about people needing assistance with 


four household maintenance tasks but results have been reported 
in a way that cannot produce unduplicated counts of people 
needing help with both household and personal maintenance. 


27 This may be an overestimate of children not receiving 
services because specifically Developmental Disabilities programs 
were not included in the WID survey. 


28 The cut-off point for older adults is not precise because 
some programs, mainly Title III, used age 60 and others used age 


65. For the most part the figures on older people represent 
people over age 65 because much fewer people are receiving 
attendant services from Title III programs. 

93 
funded, community-based attendant service programs in the WID 
survey. If the 8,493 veterans who receive Aid and Attendance 
Allowances (McCarthy, 1985) are subtracted, then a more accurate 
estimate would be that there are at least 2,125,618 non-
institutionalized people who are not receiving publicly 
supported, community-based attendant services who could benefit 
from such services. 

TABLE 28 

COMPARISON OF HOME CARE SURVEY ESTIMATES 
OF NEED FOR ASSISTANCE WITH PERSONAL MAINTENANCE TASKS 
WITH NUMBER ACTUALLY BEING SERVED IN PUBLICLY FUNDED PROGRAMS 
FROM WID SURVEY

.) 
Age Group 1984 Total Home Care Survey WID Survey 

U.S. % Needing Help # Needing Help % 
Population With 1 or More With 1 or More Being Being 
Tasks Tasks Served Served 
(FY84) 

Children 62,688,000 .23% 144,182 .10% 59,527 
(17 & under) (under 17) (under 18) 

Adults 145,430,000 .667% 970,018 .09% 136,062 
(18-64) (17-64) (18-60 or 65) 

Aging 28,040,000 6.67% 1,870,268 2.34% 654,798 
(65+) (65+) (60 or 65+) 

To make this estimate more complete, we must go one step further and 
consider the institutional population. There were 118,982 mentally retarded 
people in institutions in 1982, 1,303,000 nursing home residents in 1977 and 
232,340 people with mental disabilities in institutions in 1979, totaling about 

1.7 million people (Czajka, 1984, pp. 13-17). If one assumes that half these 
people could live at home with adequate personal assistance, then the number of 
people who may not be receiving community-based publicly supported attendant 
services who could benefit from such services could be estimated at 2,975,618 (3 
million). 


94 


The average cost per user of attendant services from the WID 
study amounts to $2,840 for all types of service. If this figure 
is multiplied by the estimated number of people not being served, 
3 million, then the additional expense could be estimated to be 
approximately $8.5 billion. Not all of this estimated $8.5 
billion would need to be new money, however. Some of the needed 
funds could be obtained by diverting Medicaid funds now going 
into institutional and nursing home care as has been proposed by 
Senators John Chaffee (Rhode island) and Bill Bradley (New 
Jersey) (Senate Bill 873, 1985). Money could also be diverted 
from the more costly contract agency mode of service delivery to 
the less costly independent provider mode whenever feasible, 
thereby freeing up dollars for new users. Money could also be 
saved by combining programs in a state in order to eliminate 
duplication of administrative costs. 29 Nor would the source of 
new money need to be public funds. Private insurers may 
eventually take some responsibility for underwriting the costs of 
personal assistance services (Alpha, 1984). More immediately, as 
more attendant programs encourage people to work and 1619 becomes 


a reality, some users would bear part of the costs of personal 
assistance services according to a sliding scale and/or b.yin 
paying taxes on earned income (see footnote 4, p. 7). 


29 Currently, the state of Wisconsin has been consideriwi 
ways to combine its personal assistance programs, for example. 



95 
CHAPTER IX 
CONCLUSIONS AND RECOMMENDATIONS 

As this study clearly indicates, there is no comprehensive 
system of attendant services in the United States. There is no 
broad federal policy; rather, scattered references to personal 
assistance services are found embedded in policies established by 
Congress and federal agencies with respect to programs such as 
Medicaid and the Older Americans Act. Consequently, jurisdiction 
over federal personal assistance programs is divided among 
several different agencies. The programs that exist are funded 
by a wide variety of federal and non-federal sources. Responding 
to what they perceive as a major need, states have developed 
their own policies and programs, usually (but not always) making 
use of those disparate federal funding sources that are 
available. States have generally failed to benefit from the 
experience of other states, apparently because until recently 
there has been little if and communication between them. All 
this has resulted in personal assistance services which are 


fragmented, lack coordination, usually medically oriented, 
burdened with work disincentives, inequitably distributed across 
the United States, and delivered by personal assistants who are 
poorly paid. 


The lack of a federal personal assistance policy has 
affected the lives of at least 3.8 million Americans of all ages 
with disabilities who presently are either receiving personal 
assistance services which may be inadequate or who are receiving 
no publicly-funded services at all. Many of these people are 
denied independent lives because they are forced to either 1) 



96 


depend on relatives and other volunteers for personal assistance, 
2) live in institutions because no community-based personal 
assistance services are available, or 3) make do with less than 
adequate services from a variety of providers over whose services 
they have little or no control. 


It is the responsibility of organizations of disabled people 
and older people as well as the general public to begin making 
Congress aware of the impact on people's lives that the lack of a 
comprehensive, funded national personal assistance policy has 
had. The World Institute on Disability is committed to working 
with people throughout the country towards the establishment of a 
comprehensive, nationally-funded personal assistance policy. We 
know how critical these services are to people with disabilities 
everywhere and from our first hand experience in California, we 
have seen the benefits such services provide. The results of 
this survey have reinforced WID's awareness that the lack of a 
comprehensive national personal assistance policy consistent with 
the principles of independent living has contributed to the 
unnecessary isolation and dependency of untold numbers of 
Americans with disabilities. 


Given this situation, our foremost recommendation is that a 


federal personal assistance services policy consistent with the 


principles of independent living be established and that a 


national personal assistance program be developed. This program 


should be funded by the federal government and private insurers 


and implemented by the states in accordance with policies and 


regulations promulgated at the federal level. Just as it took 


the enactment of Medicare, Medicaid and the Older Americans Act 



97 


to ensure that older people and poor people receive a more 
equitable share of this country's medical care and social 
services, it is now necessary to institute a National Personal 
Assistance Service Program in order to make personal assistance 
services available across the United States to all those who 
could benefit from them. 


There are many different groups of people - including policy 
makers, advocates, and people of all ages with physical, mental, 
and intellectual disabilities - who support the establishment of 
adequate, equitable community-based personal assistance services. 
If these groups and individuals come together in a broad national 
coalition, they might make rapid progress toward the development 
of a national personal assistance service. 


To this end WID Recommends: 1) that meetings of federal and 
state policy makers with representatives of and advocates for 
people of all ages with all types of disabilities be convened and 
funded by the federal government. The purpose of these meetings 
would be to discuss the implications of this study and WID's 
recommendation in order to develop proposals regarding the 
development of a national personal assistance program for 
independent living; and 2) that the federal government study what 
other countries have done to incorporate personal assistance 
services into their national social service policy. 


We now present a series of other policy and action 
recommendations which should guide the development of a National 
Personal Assistance Services Program. The first twelve of these 
were adopted by the National Attendant Care Symposium sponsored 
by the National Council on the Handicapped. The remaining four 



98 


policy recommendations have been developed 'by WID as a result of 
i t s research. Following each policy recommendation is a 
discussion of the reasoning behind it and a series of 
recommendations for action in accordance with each suggested 
policy. 


RECOMMENDATIONS 


1. The program should serve people with all types of disabilities 
on the basis of functional need. The WID survey results indicate 
that people with physical disabilities are eligible to be served 
by all the programs, but programs vary as to whether they will 
also serve people with other disabilities such as brain injury 
(90%), mental or psychiatric disability (62%) and intellectual 
disability or mental retardation (60%). 


Personal Assistance services have traditionally been 
conceived as meeting the needs of persons with physical 
disabilities. The term, however, rightfully includes any 
assistance which compensates for an individual's functional 
limitations. In this sense, many consider interpreters for 
persons with hearing disabilities, readers for persons with 
visual disabilities, and social guidance for persons with mental 
and intellectual disabilities to fit within this category. A 
good example of a program already taking this approach is Title 
III of the Older Americans Act which has geared its services to 
older people on the basis of functional difficulty rather than 
diagnosis. As a consequence, the list of services covered by 
Title III includes attendant services as well as communication 
and cognitive assistance. 


Few would question the need to provide personal assistance 



99 


services to people whose disabilities are so substantial that 
they need assistance for several hours a day or more. It must be 
borne in mind, however, that these services can also be essential 
to people who need much smaller amounts of time. Recipients of 
In-Home Supportive Services in California, for example, receive 
an average of 12 hours of service a week. Even if the need for 
personal assistance may be minor in terms of the time required, 
having it met may nevertheless be a crucial link in an indi


vidual's support system for independent living. 


WID Recommendations: 1) that every state make personal 
assistance services available to people with disabilities of all 
kinds; 2) that more information be gathered on the availability, 
type of services offered and quality of separate personal 
assistance service programs for people with intellectual, mental 
and sensory disabilities; 3) that the extent of need for 
personal assistance services to these three populations be 
explored; and 4) that demonstration projects be funded that 
combine services to these three groups with services to people 
with physical disabilities and brain injury. 


2. The Programs Should Serve People of All Ages. There are two 
issues involved here: 1) the need for people of all ages to be 
able to get personal assistance services, and 2) the need to 
combine in one program services for people of all ages. The 
survey results show that people over 60 or 65 are served by 
almost every program in the country; adults between the ages of 
18 and 60 or 65 can receive services from three-fourths of the 
programs. However, such options are much less likely to be 
available to children (and their parents). Indeed, in six 

100 


states, parents of children with disabilities can receive no 
services at all for their children (Table 22). In addition, only 
41% of the programs serve people of all ages. The rest serve 
single age groups or various combinations: 26% serve all those 
over 18 years old; 24% serve older people only; 4% serve only 
children and 6% only those between 18 and 65. 


The need for services for disabled adults of all ages 
generally is not contested. However, the necessity to provide 
personal assistance services to children with disabilities is 
still not widely accepted. 


Outside assistants could assume responsibility for at least 
part of the extra time (that is, time over and above what is 
normally required by a non-disabled child of the same age) that 
needs to be devoted to meeting the needs of a child with a 
disability. Making such assistance available could reduce 
financial and emotional stress in the family and enhance development 
of independent living in children and adolescents. 


Combining personal assistance programs for people of all 
ages (and disabilities) can only help to reduce administrative 
costs, avoid duplication and foster fruitful exchange of ideas 
for service delivery. The fact that so many existing programs 
successfully serve all age groups demonstrates that this is well 
within the realm of feasibility. The State of Wisconsin has 
already instituted discussions between the heads of the various 
personal assistance programs in Wisconsin to explore ways to 
combine them and avoid duplication of expenditures and services. 
Other states should follow suit. 


WID Recommendations: 1) that every state make personal 



101 


assistance services available to all age groups; 2) that 
projects be established to look at how children and adolescents 
who are disabled can benefit from attendant services; and 3) 
that states begin the process of consolidating programs for 
different age groups. 


3. The program should provide for the optimum degree of self-
direction and self-reliance as individually appropriate and offer 
the users a range of employer/employee and contract agency 
relationships. Currently approximately a quarter of the programs 
offer service users a choice between individual providers who are 
more or less managed by the service user and contract agency 
workers or government staff who tend to be much less consumer 
oriented. In addition, some of the 34 programs which use 
individual providers are in states which also have separate 
programs using contract agencies. Users in these states may thus 
also have a choice, although this choice may be more theoretical 
than real, since most programs which rely on individual providers 
have smaller caseloads. 


At its maximum, self-direction involves locating, 
interviewing, screening, hiring, managing, paying, evaluating and 
terminating personal assistants. Various of these functions, 
such as locating, interviewing and screening, may be performed by 
an agency or other third party while the individual maintains 
control of other tasks, such as hiring, management, payment and 
termination. For persons with limited cognitive function, more 
third party involvement and supervision may be required; such 
individuals, however, should still be able to maintain control to 
a degree consonant with their ability. The issue of user control 



102 


is of extreme importance to The Independent Living Movement 
because often people with disabilities never develop (or, having 
once developed it, lose) the ability to be independent because 
other people take charge of their lives. 


WID Recommendations: 1) that all programs allow users the 
choice of individual providers or trained home health aides and 
homemakers from public or private agencies; and 2) that a 
continuum for managing service delivery be made available, 
ranging from consumer management (to the maximum extent feasible) 
to total agency management; and 3) that users of short term 
periodic services also have the option to locate, screen, train, 


hire and pay attendants if desired; and 4) that policies be 
developed that presume consumers prefer self—direction and 
require an evidential finding that an individual does not want or 
is incapable of total self—direction. 


4. The program should offer assistance with personal, cognitive, 
communicative, household and other related services. The survey 
results show that personal assistance service programs vary 
widely with respect to the types of service provided. Currently 
only a third of the programs offer what we would consider a 
comprehensive service package of attendant and household 
assistance services, including catheter management. Very few 
programs offer readers (19%) or interpreters (13%), even though 
these services are often essential to people with impaired vision 
or hearing if they are going to function effectively. We suspect 
that even fewer programs offer cognitive services such as money 
management. Generally these services, if they are available at 
all, are provided by separate programs. 



103 


Personal assistance programs need to provide attendant 
services, communication assistance, and cognitive assistance or 
assistance with any other tasks which are essential to the 
maintenance of independence and productivity for persons with any 
type of disability. In some states these services are currently 
fragmented into separate programs so that the number of people 
going into a person's home is often needlessly increased. 
Efficiency and continuity are enhanced by allowing any assistant 
to perform any task, instead of limiting one provider's duties to 
personal hygiene and management services and another's to 
household assistance, for example. 


WID Recommendations: 1) that all rural and urban areas in 
the U.S. have a program offering the full array of personal 
assistance services needed by disabled people of all ages and all 
disabilities - physical, intellectual, mental and sensory: 2) 
that the states which offer services through separate household 
assistance and personal hygiene and maintenance services programs 
establish new programs which combine these services in terms of 
service delivery as well as organizational structure. 


5. The Program should provide services 24 hours a day, 7 days a 
week, as well as short-term (respite) and emergency assistance as 
needed. Two-thirds of the programs in the survey offered 
services 24 hours a day, seven days a week, and more than half 
the programs offer some sort of short-term services. This is a 
good beginning, but obviously it is not adequate. Although we 
did not ask specifically about emergency services, few program 
administrators mentioned them when given the opportunity to 
identify additional services not listed in the questionnaire. It 



104 


is our impression that emergency back-ups for independent 
providers, if they exist at all, can be found through the 
Independent Living Programs. 


Personal assistance services are life-sustaining in many 
cases and therefore their availability should obviously not be 
limited to certain hours. Programs should have back-up 
assistants available on a short-term or emergency basis to fill 
in the inevitable gaps that occur in the personal support systems 
of individuals with extensive disabilities. In cases where the 
bulk of services are provided by family members or friends, these 
arrangements are much less likely to break down if services are 
available on a short-term as well as emergency basis. 


WID Recommendations: 1) that all programs make services 
available 24 hours a day, 7 days a week; 2) that a pool of 
emergency assistants be maintained in every locality; 3) that 
short-term services be established for all age groups in the 16 
states that do not offer them and 4) that short-term services be 
available for longer periods (2 - 4 weeks) or less on a regular 
or periodic basis; and 5) that short-term and emergency services 
be provided in the location the user requests, instead of being 
restricted to institutional settings. 


6. The program should serve people at all income and resource 
levels on a cost sharing basis as appropriate and employment 
disincentives should be eliminated. The vast majority of 
existing programs discourage people from working. Only 36% of 
them had graduated cost-sharing formulas. Only 10 programs had 
an income ceiling above $15,000 a year. 
Without any public assistance at all, a single person with 



105 


an extensive disability requiring approximately 20 hours of 
personal assistance service per week would need, at barest 
minimum, $15,000 a year in income, i.e. $5,200 to pay his or her 
attendant plus a very modest $9,800 for living expenses, not to 
mention any disability-related expenses that might arise. 


A major disincentive to employment would also be eliminated 
if Medicaid benefits or other provisions for health care could be 
made available to disabled workers if they are unable to obtain 
other health insurance. Currently, unless one is fortunate 
enough either 1) to work in a large organization with a nonrestrictive 
group policy, 2) to live in the State of Wisconsin, 
which has a state insurance fund for the disabled (Griss, 1985), 
or 3) to be eligible for Medicaid under Section 1619 of the 
Social Security Act (see footnote 4, p. 7), it is almost 
impossible for people with disabilities to obtain health 
insurance. 


WID Recommendations: 1) that all personal assistance 
service programs establish an appropriate cost-sharing formula 
and a realistic income ceiling from which all reasonable 
disability-related expenditures are excluded; and 2) that 
Medicaid benefits or other federal health insurance be made 
available to disabled workers who are unable to obtain private 
health insurance at reasonable cost. 


7. Services should be available wherever they are needed (eg. at 
home, work, school, on recreational outings, or during travel). 
Currently personal assistance services are rarely available 
outside the home unless a disabled individual employs his or her 
own assistant. Few programs provide attendants in work, school, 

106 


or recreational settings or for out-of-town trips. Services are 
provided only to the extent necessary to keep someone functioning 
at home or, in the case of children, functioning at school. 


WID Recommendations: 1) that personal assistance be made 
available to users, not only for personal maintenance, hygiene 
and mobility tasks and housework, but also for work, school and 
recreation needs as well; 2) that eligibility requirements not 
limit the geographic mobility of the individual, so that people 
needing personal assistance are allowed to travel outside a state 
and still retain coverage for personal assistance services; and 
3) that employers in both the private and public sectors explore 
the possibility of making personal assistants available in the 
workplace as is already being done in Sweden (Ratzka, 1986). 


8. Personal Assistants should receive reasonable remuneration 
and basic benefits. The poor quality of attendants and the high 
rate of attendant turnover are major concerns for program 
administrators and consumers alike. This is directly 
attributable to the low wages that all types of attendants 
receive ($3.87/hour for individual providers and about $4.75/hour 
for contract agency and government workers) and the minimal 
benefits (usually none) that contract agency workers and 
independent providers receive (Table 14). 
WID Recommendations: 1) that attendants be paid at least 
150% of the minimum wage with periodic increases to reflect 
inflation and growth in experience and qualifications; 2) that 
attendants receive paid sick leave, vacation and group health 
insurance benefits in addition to Social Security, worker's 
compensation and unemployment benefits; 3) that joint 



107 


discussions between unions and users be instituted to explore 
ways in which users and assistants can work together to provide 
better benefits for each other. 


9. Training for administrators and staff of administering 
agencies and provider organizations should be provided. 
Because personal assistance for independent living is relatively 
new as a human service profession, and because a definite 
philosophical foundation underlies the delivery of these 
services, it is unlikely that new program administrators and 
staff will have the knowledge or experience necessary to take the 
proper approach in operating such programs. It is therefore 
essential that they be trained and inspired by people who are 
thoroughly knowledgeable about personal assistance services, both 
in conceptual and practical terms. 
WID Recommendations: 1) that the legislation establishing 
the program (as well as the implementing regulations) require 
that administrators and agency personnel undergo appropriate 
training; and 2) that qualified disabled persons who use personal 
assistance services play a significant role in this training 
nationwide. 


10. The program should provide recruitment and training of 
personal assistants as appropriate. The issue of training for 
personal assistants is receiving much attention across the 
country. Besides contract agency training programs, some 
community colleges and technical schools are offering courses as 
well as some ILPs. The controversy regarding these programs 
centers on the degree to which independent living philosophy is 
taught, the degree to which assistants are encouraged to look to 

108 
their clients for training in their particular needs, and the 


 
level and type of training (and perhaps licensure) necessary for Ti 
assistants who will be working with people with intellectual or 
mental disabilities. 


Some people prefer to hire totally untrained assistants and 
personally train them to meet their specific needs. Others would 
rather only consider assistants who have already been screened as 
to their personal qualifications and experience. Those with 
intellectual or mental disabilities and brain injury who require 
assistance in financial management, adherence to medication 
schedules and other tasks are likely to need assistants who can 
pass very strict tests of character, reliability and experience. 


WID Recommendations: 1) that all personal assistant training 
programs be imbued with the Independent Living philosophy; 2) 
that training programs be managed and administered by the 
Independent Living Centers, wherever possible; 3) that personal 
assistants be taught that, whenever possible, the bulk of their 
training will be provided by their clients; 4) that users of 
personal assistance be instructors in the training program; 5) 
that training of personal assistants not be mandatory in most 
cases; 6) that registration and special training be required for 
those working with people with mental or intellectual 
disabilities; and 7) that personal assistant referral, 
recruitment and screening services be available for users who 


desire them. 


11. The program should provide effective outreach and training 
of consumers as appropriate. Many people who could benefit from 
personal assistance services are likely to be unaware of their 

109 


availability. Effective efforts to reach out to potential users 
are thus essential. Effective outreach tends to increase program 
costs, however, so it is not surprising that programs are unenthusiastic 
about doing it. Programs therefore need to be 
required to conduct effective outreach. 


Informing people that services are available is not 
sufficient, however. People need to be made aware of what 
personal assistance services are and how these services can help 
them live more independently and productively. People living 
in nursing homes or growing up with their families in dependent, 
sheltered environments, often have no conception of the degree of 
personal independence they can achieve or of the programs 
available to assist them in reaching these goals. Even though 
the independent living movement has had a considerable impact 
during its first 15 years .of existence, there are still thousands 
of people who have not been touched by its precepts. 


Once they become aware of the benefits of using personal 


assistants, many people with disabilities will need training in 


how to use personal assistant services to best advantage and how 


to establish and maintain effective working relationships with 


their assistants. Managing attendants is somewhat akin to 


operating a small business in that it requires personnel manage


ment, budgeting, employee supervision and training, payroll 


management and the like. A number of Independent Living 


Programs, being consumer-oriented, have recognized the importance 


of consumer training, developed training programs, and, in 


several cases, published training manuals (see Bibliography). 


WID Recommendations: 1) that all personal assistance 



110 
service programs be required to undertake outreach efforts such 
as visits to rehabilitation centers, sheltered workshops and 
0 
schools, as well as brochures, public service announcements on 
T.V. and radio, buses, and so on; and 2) that personal assistance 
service programs offer both training for consumers in management 
)I 
of personal assistants and follow-up. 
12. Consumers should participate to a substantial degree in 
policy development and program administration. It is reasonable 
to assume that, except in the few cases where Independent Living 
Programs have taken a leading role in establishing and/or 
administering personal assistance programs, there has been no 
1! 
significant involvement of consumers in program administration 
and policy development. Because the issues involved are so 
complex and so unfamiliar to most public administrators, and 
aI 
because consumer control is so central to the philosophy 
underlying this service, it is imperative that persons who use 
personal assistance services be involved, not merely in an 
al 
advisory or consulting capacity, but as full participants in the 
process of developing policy and administering personal 
assistance service programs. 
WID Recommendations: 1) that every personal assistance 
service program actively recruit personal assistance users to 
fill administrative and management positions; and 2) that 
41 
representatives of Independent Living Programs be included on 
policy boards and state/local commissions which establish 
personal assistance service policy, rules and regulations. 
13. The program should not restrict individual providers from 
administering medications or injections or from carrying out 


111 


catheter management. Many programs define these services as 
medical or paramedical and only allow relatively well-paid 
Registered Nurses or Licensed Practical Nurses to provide them. 
Only 59% of the programs surveyed allowed administration of 
medications; 37% allowed administration of injections. Catheter 
management was provided by fewer than half the programs. 
Furthermore, in a number of states (most notably New York) where 
there are now no restrictions regarding paramedical services, 
nursing associations are campaigning to prohibit non-licensed 


providers from performing these tasks. 


Many disabled people reasonably argue that there is no 
justification for such restrictions, particularly in the case of 
individuals able to manage their own personal assistants. These 
restrictions only serve to drive up the cost of personal 
assistance services and complicate lives of people with 
disabilities by increasing the number of providers with whom they 
need to deal. 


Nowhere are concerns raised about the fact that nurses, as a 
matter of course, teach family members, friends and people with 
disabilities themselves to do tasks such as respiratory and 
catheter management, injections, or giving medication. Clearly, 
non-licensed providers as well can be trained to perform such 
tasks with due care. (For a fuller discussion of this issue see 


Zukas, 1986). 


WI D Recommendations: 1) that programs allow personal 
assistance users to train independent providers in catheter 
management, injections and medication administration; and 2) that 
programs ensure that all providers are allowed to provide the 



112 
full range of services, paramedical as well as non—medical. 
14. Family members should be eligible to be employed as 
It 
individual providers. Many disabled people of all ages rely 
exclusively on spouses or other family members for personal 
assistance. Currently, however, only about a quarter of the 
programs surveyed (41) allow family members to be compensated for 
their services. 
In the case of adults who are disabled, when a user prefers 
to use a family member as an attendant, the family member should 
be paid for that service. The provision of personal assistance 
services is work; it should not be treated as forced 
volunteerism. Provision of money to hire an attendant should 
mean that anyone, related by blood or not, can be hired by the 
user. The issues involved here are dignity, control and choice 
4, 
for both the user and the provider as well as reduction of family 
stress. 
WID Recommendation: 1) that all family members be eligible 
to be paid providers at a user's request; and 2) that a cash 
"personal assistance allowance" be provided which the disabled 
person can use to hire family members or to purchase services 
from the outside. 
15. No one should enter a nursing home or institution unless a 
finding has been made that they cannot live at home even with 
it I 
personal assistance. Currently, many people enter nursing homes 
because alternative ways of meeting their needs either are not 
available or have not been considered. Once someone has entered 
a nursing home, it is often extremely difficult to reverse the 
process because family and community ties are often severed, 


113 


homes and household items have been sold, and so on. 


WID Recommendation: that all states institute mandatory 
programs to screen prospective nursing home admissions. 


16. Mechanisms for accountability should be developed that take 
into account the user's need for independence. The debate over 
whether a program should mandate that users have the choice of 
hiring independent providers often comes down to questions of 
liability. Unfortunately there may be a major conflict between 
users' needs for independence and the states' need to protect 
themselves from liability for any abuse of users by personal 
assistants. The fear is greatest in the case of users who are 
not capable of completely managing their own personal assistant 
and in the case of users who need more "invasive" personal 
assistance with injections, medications, and catheters. 
WID Recommendation: that a conference of independent living 
activists, users and program administrators be convened to 
discuss the issue of liability more fully. 


Over the years the United States government has developed 


programs, such as SSI, in order to ensure that people who are 


disabled or elderly would have a minimum level of income. 


However, income maintenance is not in and of itself sufficient to 


insure independent living for people who are disabled. Personal 


assistance, particularly attendant services, is crucial to 


maintaining adults of all ages who are disabled in the community. 


Recognizing this fact, two key conferences were convened in 


1985 by the World Rehabilitation Fund and the National Council on 


the Handicapped in conjunction with the World Institute on 



114 
Disability to discuss the state of personal assistance services 
in the U.S. and Europe. The participants at these conferences-
including representatives of the Independent Living Movement, 
state and national disability organizations, state and federal 
government, researchers, consumers and advocates - all concluded, 
along with WID, that a national personal assistance program for 
independent living must be established. 


Maintaining the current non-policy will no longer work. 
What has emerged on a de facto basis as an outgrowth of existing 
federal programs is a medical model of personal assistance 
service delivery which is unnecessarily costly and inadequate. 
There is an ever growing population of older people needing 
attending services and an increasing number of families unable to 
provide those services. 


The situation, in short, is reaching crisis proportions. In 
order to deal with it, it behooves policy makers to give serious 
consideration to this study and the recommendations it contains. 



115 
BIBLIOGRAPHY 
References 
Adams, K. (1986, July). [Discussion between the World Institute 
on Disability staff and international organizer, Service 
Employees International Union]. Unpublished. 
Alpha Center. (1984, May). Long-term care alternatives: 
Innovations in financing chronic care for the elderly. 
Alpha Centerpiece. Bethesda, MD: Author. 
Association for Retarded Citizens. (1985). House subcommittee 
holds hearing on medicaid waiver program. Association for 
Retarded Citizens Government Report, 15(No. 13), pp 6-7. 
Bowe, F. (1985). Black adults with disabilities: A statistical 
report drawn from census bureau data. Washington, DC: 
President's Committee on Employment of the Handicapped. 
Connell, J., Vagnoni, J., & Vafeas, J. (1986). An assessment of 
attendant care needs among disabled Pennsylvanians. 
Philadelphia, PA: Pennsylvania Developmental Disabilities 
Council. 
The Consolidated Omnibus Budget Reconciliation Act of 1 9 8 5 , 
Public Law 99-272, Section 9502. (1986). 
Czajka, J.L. (1984). Digest of data on persons with 
disabilities. Washington, DC: Congressional Research 
Service, The Library of Congress. (Report no. 84-1153 EPW). 
DeJong, G., & Sager, A. (1977). The need for personal care 
services by severely physically disabled citizens of 
Massachusetts. Boston, MA: Rehabilitation Research and 
Training Center No. 7, New England Medical Center. 
DeJong, G. & Wenker, T. (1979). Attendant care as a prototype 
independent living service. Archives of Physical 
Medicine and Rehabilitation, 60, 477-482. 
Griss, B. (1985). Report on health care coverage for workingaged 
persons with physical disabilities: A key to reducing 
disincentives to work. Madison, WI: Office for Persons 
with Physical Disabilities. 
Gunterman, Emma. (1986). Correspondence regarding attendant 
services. Unpublished. 
McCarthy, Jennifer (Assistant to Senator Alan Cranston). (1985). 
Personal written communication regarding Veteran 
Administration Attendant Services' Allowance.

116 
Nosek, M. (1986). Personal assistance: attendant services, 
readers and interpreters. In appendix to Toward 
independence: An assessment of federal laws and programs 
affecting persons with disabilities with legislative 
recommendations. (052-003-01023-2). Washington, DC: U.S. 
Government Printing Office. 
Oktay, J. S. & Palley, H. A. (1983). The chronically limited 
elderly. Home Health Care Services Quarterly, 4(2). 
Oriol, W. (1985). The complex cube of long term Care: The case 
for next step solutions -- Now. Washington, DC: American 
Health and Planning Association. 
Ratzka, A. D. (1986). Independent living and attendant care in 
Sweden: A consumer perspective. (Monograph No. 34). New 
York, NY: World Rehabilitation Fund. 
Reaser, J. M. (1985). How are things on the home front: A 
report of a survey of elderly recipients of homemaker-home 
health aide services in four communities. Washington, DC: 
Research and Data Resources Department, American Association 
of Retired Persons. 
Title 38, United States Code, Section 314(o),(p),(i),(r),(2), 
1984. Rates of Wartime Disability Compensation. 
U.S. Bureau of the Census. (1986). Statistical abstracts. 
Washington, DC: U.S. Government Printing Office. 
U.S. Department of Health and Human Services. Annual revision of 
the poverty income guidelines. (March 8, 1985). Federal 
Register, 50(46), 9517-9518. 
U.S. General Accounting Office. The elderly should benefit from 
expanded home health care but increasing these services will 
not insure cost reductions. (1982). Washington, DC: 
Author 
U.S. Senate. (1985). 5.873. A bill to amend Title XIX of the 
Social Security Act to assist severely disabled 
individuals to attain or maintain their maximum potential 
for independence and capacity to participate in community 
and family life. Introduced in 99th Congress, 1st 
Session. 
Van Nostrand, J.F. (1984). Long term care populations: 
Demography and projections. In The complex cube of longterm 
care: A national working conference, conference 
a ers. (Tab 4, Attachment . Washington, DC: American 
Health and Planning Association and The Veterans 
Administration.

117 
Zola, I. K. (1986, May). Toward a unifying agenda: Some major 
1 issues cross-cutting policies and programs concerning aging 
1 and disability. Background paper for the Pew Health Policy 
I Fellows Conference, Philadelphia, PA. 
i 
Zukas, H. (1986). Attendant services, paramedical services, and 
• liability issues. Berkeley, CA: World Institute on 
Disability. 
Works Consulted 
General 
American Health and Planning Association and The Veterans 
Administration. (1984). The complex cube of long term 
care: A national working conference, conference papers. 
Washington, DC: Author. 
Attendant care problems prompt new laws and still there are 
problems. (1985, May). The Disability Rag, p.11. 
Australian Council for Rehabilitation of Disabled. (1980). A 
National Attendant Care Allowance, a discussion paper. — 
Australia: Author. 
Bureau of Economic Research. (1985). Economic consequences of 
spinal cord injury. (Final Report, Project No. NAO-384). 
New Jersey: Rutgers, The State University of New Jersey 
Cocking, P. (1981). Working paper No. 1: Population 
projections from the survey of handicapped persons. ACROD 
Disability Issues. Australia: ACROD (Australiam Council 
for Rehabilitation of Disabled) Limited. 
Cocking, P. (1984). Working Paper No. 2: Population estimates 
from organisations for people with physical disabilities. 
ACROD Disability Issues. Australia: ACROD (Australian 
Council for Rehabilitation of Disabled) Limited. 
CPAC: Anatomy of a grassroots effort. (1984, April). The 
Disability Rag, 1-5. 
Deimling, G. T. & Poulshock, S. W. (1985). The transition from 
family in-home care to institutional care. Research on 
Aging, 7,(4), 563-576. 
DeJong, G. (1978). Disability, home care and relative 
responsibility: A legal perspective. (Grant No. 16-P- 
57856/1-04). Boston, MA: Medical Rehabilitation Institute, 
Tufts-New England Medical Center.

118 
DeJong, G. (1986, April). Speech given at the National 
Conference on Attendant Care, Philadelphia, PA: Sponsored 
by Pennsylvania Department of Public Welfare. Unpublished. 
DeJong, G. (1985, September). Toward a unified agenda on the 
in-home attendant services. Paper presented at "Toward a 
Unified Agenda: A National Conference on Disability and 
Aging," Racine, WI: Wingspread Conference Center. 
Drew, L. S. & Dunker, C. J. (1984). Employing the disabled to 
provide home and community services. Paper presented at the 
45th Annual Conferencee of the American Society for Public 
Administration, Wichita, KS. 
Feller, B. A. (1983). Americans needing help to function at 
home. NCHS Advancedata, No. 94, pp. 1-11. Washington, DC: 
U.S. Department of Health and Human Services. 
The Flinn Foundation. (1980). The Pritzlaff Commission on longterm 
care in Arizona: Executive summary. Arizona: 
Author. 
La Vol, J. & Callender, M. (1976). Home health cost 
effectiveness: What are we measuring? Medical Care, 14, 
866-872. 
Longwood, D. (1984). Private sector interest in long-term inhome 
attendant care. Berkeley, CA: The World Institute on 
Disability. Unpublished. 
Mc Neil, J. (1985). Selected materials on the prevalence of 
disability. Washington, DC: U.S. Bureau of the Census. 
Minkler, M. & Blum, S.R. (1982). Community-based home health 
and social services for California's elderly: Present 
constraints and future alternatives. (Monograph No. 13). 
Berkeley, CA: University of California, Institute of 
Governmental Studies. 
National Council on the Handicapped. (1986). Toward 
independence: An assessment of federal laws and programs 
affecting persons with disablities with legislative 
recommendations. (052-003-01022-4). Washington, DC: U.S. 
Government Printing Office. 
The National Study Group on State Medicaid Strategies. (1984). 
Restructuring Medicaid: An Agenda for Change. Washington, 
DC: Center for the Study of Social Policy. 
New analysis of Health Interview Survey data. (1984, 
July/August). Programs for the Handicapped, pp. 7-10.

119 
New Mexico Long Term Care Commission. Demographic background 
materials/Appendix to final report: Disabled and elderly 
populations. Undated. 
Newacheck, P. W., Budetti, P. P., McManus, P. (1984). Trends in 
childhood disability. American Journal of Public Health, 
74(3), 232-236. 
Noelker, L. S. & Wallace R. W. The organization of family care 
for impaired elderly. (1985). Journal of Family Issues, 
6(1), 23-44. 
Nosek, M. A. (1985). Expanding attendant care options for 
disabled Texans: A source book. Houston, TX: Independent 
Living Research Utilization Project. 
Nurses fight attendant care laws. (1985, August). The 
Disability Rag, 9. 
Office of Human Development Services, Office of Policy 
Coordination and Review. Pre-expenditure reports: 1983 
analysis of fiscal year, 1983 social services block grant. 
Washington, DC: Author. 
Oktay, J.S. & Paley, H.A. (1981). Home health and in-home 
service programs for the chronically-limited elderly: Some 
equity and adequacy considerations. Home Health Care 
Services Quarterly, 2,(4), 5-27. 
Paralyzed Veterans of America. (1976). Aide and attendance 
survey. Washington, DC: Author. 
Paralyzed Veterans of America. (1982). Survey of commercial 
attendant care providers. Washington, DC: Author. 
Pennsylvania statewide attendant care task force. Attendant care 
position paper. (1983). Pittsburgh, Pa: Allegheny County 
Department of Planning. 
Poulshock, S. W. & Deimling, G. T. (1984). Families caring for 
elders in residence: Issues in the measurement of burden. 
Journal of Gerontology, 39(2), 230-239. 
Price, R. & Arbuckle, P. (1983). Federal programs that finance 
home health care services. (Report No. 83-235 EPW). 
Washington, DC: Congressional Research Service, The Library 
of Congress. 
Shanks, J. M. & Freeman, H. E. (1980). Executive Summary for 
the California Disability Survey. Sacramento, CA: 
Department of Rehabilitation. 
Sheehan, S. (1983, November 21). A reporter at large, Kate 
Quinton: Part I. The New Yorker, pp. 56-134.

120 
Sheehan, S. (1983, November 28). A reporter at larger, Kate 
Quinton, Part II. The New Yorker, pp. 58-138. 
Smith, M. (1985). Residential and community services for 
persons with mental retardation and related disabilities: 
Background information and proposed legislation. 
Washington, DC: Congressional Research Service, The Library 
of Congress. 
Soldo, B. J. (1985). In-home services for the dependent 
elderly: Determinants of current use and implications for 
future demand. Research on Aging, 7,(20). 
South Carolina Vocational Rehabilitation Department. (1981). 
Independent living services survey. Columbia, SC: 
Author. 
Soyka, P. W. Homemaker-home health aide services for handicapped 
children. (1976). Child Welfare, 55, 241-251. 
The story of a compromise. (1984, April). The Disability 
Rag, 6-8. 
Thornock, et al. (1978). Attendant care needs of the physically 
disabled: Institutional perspectives. Rehabilitation 
Literature, 39, 147-153. 
Townsend, A. L. & Poulshock, S. W. (1986). Intergenerational 
perspectives on impaired elders' support networks. Journal 
of Gerontology, 41(1), 101-109. 
U.S. General Accounting Office. (1981). Improved knowledge base 
would be helpful in reaching policy decisions on providing 
long-term, in-home services for the elderly. Gaithersburg, 
MD: Author. 
Upshur, C. C. (1982). An evaluation of home-based respite care. 
Mental Retardation, 20, 58-62. 
Vermont Center for Independent Living. (1984). A summary of 
Full human potential. Montpelier, VT: Author. 
World Institute on Disability. (1985). Report on National 
Attendant Care Symposium. Proceedings from a national 
meeting sponsored by the National Council on the 
Handicapped, National Coalition of Independent Living, and 
the World Institute on Disability. Berkeley, CA: Author. 
Zukas, H. (1982). A case for a national attendant care 
program. Berkeley, CA: World Institute on Disability. 
Zukas, H. (1985). Summary of Federal Funding Sources for 
Attendant Care. Berkeley, CA: World Institute on 
Disability.

121 
Independent Living 
(1983). Independent living 
San Francisco, CA: 
Crewe, N.M. & Zola, I. & Associates. 
for physically disabled people. 
Jossey-Bass, Inc. 
Gliedman, J. & Roth, W. (1980). 
handicapped children in America. 
Bruce Jovanovich. 
The unexpected minority: 
New York, NY: Harcourt 
Independent living concept gaining national attention, federal 
support. (1980). Programs for the Handicapped, 1, 8-14. 
Independent living [Special Issue]. (1976). Archives of 
Physical Medicine and Rehaiblitation, 60,(10). 
Pflueger, S. (1979). Independent living: Emerging issues in 
rehabilitation. (RSA Contract No. 22-p. 5901 9/3-01). 
Washington, DC: Institute for Research Utilization. 
Legislation, Rules and Regulations 
Administrative Rules: Personal Care Assistance Program. OH: 
R.C. Chapter 119 (3304-4-01) (1982). 
Assembly Bill No. 533. (1985). Nevada: Committee on Health and 
Welfare. 
Demonstration projects relating to the training of AFDC 
recipients as home health aides. Section 966. Omnibus 
Reconciliation Act of 1980. Public Law 96-2655. (1980). 
Homemaking/personal care services. Rhode Island Department of 
Social and Rehabilitative Services Manual. (1983). 
(Section 515). Providence, RI: Department of Social and 
Rehabilitative Services. 
Older American's Act Amendments of 1984, U.S. Public Law 98-459. 
Participant Directed Attendant Care Program. Regulations. 
Montpelier, VT: Agency of Human Services. (1983). 
Personal Care Attendant Demonstration Program. (1985). 
Chapter 307 of Public Laws of 1985. New Jersey. 
Personal Care Attendant Demonstration Program. (1986). 
Chapter 524 of Public Laws of 1986. New Jersey. 
Personal Care Services. Proposed Rule. NY 11-18 NYCRR 505.14 
a-b (1985). 
Senate bill No. 118. (1984). (84 BR 277/SCS). Submitted to 
Commonwealth of Kentucky, regular session of 1984.

122 
The Veterans Administration. (1985). Benefits for Veterans and 
Dependents. Washington, DC: U.S. Government Printing 
Office. 
Program Evaluations, Descriptions, Proposals and Reports 
Birnbaum, H., Gaumer, G., Pratter, F., & Burke, R. (1984). 
Nursing Homes Without Walls: Evaluation of the New York 
state long term home health care program. Cambridge, MA: 
Abt Associates. 
California Department of Social Services. (1983). The 
feasibility of implementing time-per-task standards in the 
In-Home Supportive Services Program. Sacramento, CA: 
Author. 
Center for Accessible Living. (1983). Attendant care in 
Kentucky: What's available. Louisville, KY: Author. 
Clark, A. & Fragher, J. (1986). Evaluation of the attendant 
care pilot project. Sydney, NY: University of Sydney, 
Department of Community Medicine. 
Community Services Institute. (1985). Contract summary and 
supplemental program descriptions: Attendant care program. 
Narbeth, PA: Author. 
DeJong, G. (1977). Meeting the personal care needs of severely 
physically disabled citizens in Massachusetts. Waltham, 
MA: Levinson Policy Institute, Brandeis University. 
Department of Health and Rehabilitative Services, Aging and Adult 
Services. (1981). Instructional guide to assessment of 
individuals for aging and adult services: Client assessment 
forms. (HRS-AA 3003, A,B,C,D,E,F). Washington, DC: 
TTEFFT. 
Eckoff, R. & Aalberts, N. (1985). Report to the Governor and 
General Assembly regarding state funding for homemaker-home 
health aide/chore services. Des Moines, IA: Iowa Health 
Department. 
Florida Office of Evaluation. (1982). An evaluation of 
Florida's home care for the elderly and adult foster home 
programs. Tallahassee, FL: Author. 
Greenberg, J. N., Schmitz, M. P. & Lakin, K. C. (1983). An 
analysis of responses to the Medicaid home and communitybased 
long-term care waiver program. Washington, DC: State 
Medicaid Information Center, National Governor's 
Association. 
1 
0

123 
Guyer, Mary E., Newell, Cindy. (1984). State of Nevada 
attendant care survey. Carson City, NV: Nevada Division 
of Rehabilitation. 
Health Care Financing Administration. P. L. 97-35 Section 2176 
waiver requests for home and community-based services: 
Description of home and community-based services initial 
requests, approval and effective dates as of 2/29/84. 
(1984). Washington, DC: Author. 
Idaho Bureau of Medical Assistance. Personal care attendant 
program. (Undated). Internal document. Boise, ID: 
Department of Health and Welfare. 
Idaho Office on Aging. (1984). Review of Idaho's Homemaker 
Services for the Elderly: State Fiscal Year 1984. Boise, 
ID: Author. 
Illinois Department of Rehabilitation Services. Home services 
for the severely handicapped: Annual report, 2. 
Springfield, IL: Author. 
Kentucky Cabinet of Human Resources. (1986). Independent care 
assistance network project report: July 1, 1985-December 
31, 1985. Frankfort, KY: Cabinet for Human 
Resources. 
Kentucky Cabinet for Human Resources. (1985). Staff report: 
Bluegrass area development district waiver project. 
Louisville, KY: Commonwealth of Kentucky, Division of 
Medical Assistance. 
Krieger, M. J. & Potemken, D. (1982). Characteristics of 
Medicaid home and community-based waiver program 
applications, Vol. I: Background and Summary. (Working 
paper: #3198-2). Washington, DC: The Urban Institute. 
Krieger, M. J. & Potemken, D. (1982). Characteristics of 
Medicaid home and community-based waiver program 
applications, Vol. II: Abstracts of state waiver 
applications. (Working paper: #3198-2). Washington, DC: 
The Urban Institute. 
Laninga, D. (1986). Pennsylvania attendant care model. Memo. 
Harrisburg, PA: Pennsylvania Department of Public 
Welfare. 
Laninga, D. Pennsylvania Department of Public Welfare Attendant 
Care Program: 1984-85 Fiscal Year. (1985). Harrisburg, 
PA: Department of Public Welfare, Office of Policy, 
Planning and Evaluation.

124 
Markowitz, R. K. (1984). Evaluation of the Maryland Attendant 
Care Pilot Project. Baltimore, MD: John F. Kennedy 
Institute. 
Maryland Department of Health and Mental Hygiene. (1985). 
Medical assistance personal care services utilization survey 1 
report. Baltimore, MD: Author. 
Maryland Department of Health and Mental Hygiene. (1984). 
Report to the House Appropriatations Committee and Senate 
Budget and Taxation Committee on In-Home/Personal Care 
Services. Baltimore, MD: Author. 
Maryland Department of Budget and Fiscal Planning. (1984). 
Review and comparison of four in-home service programs: 
Department of Health and Mental Hygiene: Medical Assistance 
Personal Care, Department of Human Resources: In-Home Aide 
Services, Inter-Agency Council on Aging Services (Office on 
Aging): Gateway II, Maryland State Department of 
Education: Attendant Care. Baltimore, MD: Author. 
Michigan Office of Adult and Family Community Services/ 
Independent Living Services Unit. (1983). Home Help -- 
Handicapper Services Project: "Data analysis" (supplement to 
final report). Lansing, MI: Author. 
Michigan Office of Adult and Family Community Services/ 
Independent Living Services Unit. (1983). Home Help -- 
Handicapper Services Project: Phase I: Final Report. 
Lansing, MI: Author. 
Minnesota Department of Public Welfare. (1982). An analysis of 
the Department of Public Welfare's Personal Care Attendant 
Program. St. Paul, MN: Author. 
New York Department Social Services. (1979). Contracting for 
personal care services and contracting for Nursing 
Assessment and Nursing Supervision of personal care services 
by social services districts. (Transmittal No.: 79 ADM- 
34). Albany, NY: Author. 
New York Department of Social Services. (1980). Personal care 
services -- scope and procedures. (Transmittal No.: 80 
ADM-9). Albany, NY: Author. 
New York Department of Social Services. (1982). Personal care 
service in New York state: A profile of the population: 
Report 1. Albany, NY: Author. 
New York Department of Social Services. (1984). Personal care 
services reimbursement limitations. (Transmittal No.: 84 
ADM-6). Albany, NY: Author. 
1)

U? 
125 
New Hampshire State Council on Aging. (1985). Project 
directory. Concord, NJ: Author. 
Ohio Legislative Service Commission. (1982). Financial 
assistance for personal care services for severely 
physically disabled persons. Columbus, OH: Author. 
Oklahoma Commission for Human Services. (1983). Waiver 
application -- aged and adult physically disabled. Oklahoma 
City, OK: Author. 
Oregon Department of Human Resources. (1984). Title XIX waiver 
request. Salem, OR: Author. 
Palmer, B. H. (1984). Community care for the elderly: FY 83- 
84, quarter 4, year end program report. Tallahassee, FL: 
Department of Health and Rehabilitative Services. 
Pennsylvania Community Services Institute. (1985). Technical 
assistance plan: Attendant care program. Narbeth, PA: 
Author. 
Pennsylvania Department on Aging. (1984). Special grants for 
attendant care for the elderly. (Aging Program Directive: 
#84-10). Harrisburg, PA: Author. 
Personal care assistance -- an evaluation of the HCSB. (1985). 
The Disabled Washingtonian, 1,(2). Washington, DC: DC 
Center for Independent Living. 
A Proposal for the development of personal care attendant 
services in Michigan. 
Rhode Island Department of Elderly Affairs. (1985). Rhode 
Island Department of Elderly Affairs: In-home services 
program: Fourth annual report: July 1, 1983-June 30, 1984. 
Providence, RI: Author. 
Rules governing medical assistance. (1983). Title III, Chapter 
9. Boise, ID: Department of Health and Welfare. 
Schultz, C. Testimony on the Personal Care Attendant Program. 
Presented before the Minnesota Senate Committee on Human 
Services on August 26, 1982. 
Services for Independent Living. Documentation over a course of 
two years of pursuing a piece of legislation to bring about 
a state funded personal care attendant program in Ohio. 
(1982-1984). Euclid, OH: Author. 
Smith, D. (1977). Alternatives to inpatient care in Linn 
County. Iowa Health Systems Agency.

126 
Smith, G., Yoshimoto, C. K., Goto, L. S. & Tani/ C. (1985). 
Second annual report on the Nursing Home Without Walls 
demonstration project. Honululu, HI: Department of Social 
Services and Housing. 
Smith, M.F. (1985). Residential and community services for 
persons with mental retardation and related disabilities: 
Background information and proposed legislation. 
Washington, DC: Congressional Research Service, Library of 
Congress. 
Tennessee Department of Human Services. (1985). Annual social 
services state plan for the state of Tennessee. Nashville, 
TN: Author. 
Tennessee Department of Human Services. (1984). 
homemaker services. Nashville, TN: Author. 
Survey of 
Texas Department on Aging. (1984). Biennial report: September 
1982-August 1984. Austin, TX: Author. 
Texas Department of Human Resources. (1985). Summary: 1915(c) 
model waiver program: Special targeted home and communitybased 
services. Austin, TX: Author. 
Verhage, M. (1979). Manual for evaluation of PCA services. 
Boston, MA: Department of Public Welfare. 
Waiver under Section 2176, long-term care alternatives. Rhode 
Island Department of Social and Rehabilitative Services 
manual. (1983). (Section 305). Providence, RI: 
Department of Social and Rehabilitative Services. 
'I 
Zukas, H., Cone, K., & Leon, J. (1984). Descriptive analysis of 
the In-Home Supportive Services Program in California. 
Berkeley, CA: World Institute on Disability. 
Training Materials for Users and Attendants 
Access to Independence. Working together: Disabled people and 
their attendants talk about attendant care. [Sound and 
slide show]. Madison, WI: Author. 
Attendant care basics. [Videotape]. Berkeley, CA: Videotape P 
Applied Video Services. 
Berkeley Center for Independent Living. (1984). Proposal for 
training project. Berkeley, CA: Author. 
Boston Information Center for Individuals with Disabilities. 
(1984). Attitudes to look for and maintain in your personal 
care attendant. Boston, MA: Author.

127 
Boston Information Center for Individuals with Disabilities. 
(1984). How to find a personal care attendant in the 
greater Boston area. Boston, MA: Author. 
Center for Independent Living. Attendant orientation. Berkeley, 
CA: Author. 
League of Human Dignity. (1985). Attendant services training 
package. Lincoln, NE: Author. 
Minnesota Department of Public Welfare. (1984). Guide to 
Personal Care Attendant Program for personal care 
attendants. St. Paul, MN: Author. 
New York Department of Social Services. (1978). Training for 
personal care service providers. (Transmittal No.: 78 ADM- 
19). Albany, NY: Author. 
Ohio Rehabilitation Services Commission. Attendant Care Program: 
Payroll tax guide. (1983). Salt Lake City, UT: Author. 
Resource Center for the Handicapped. (1983). Hands helping 
hands: Personal care attendant training manual. Seattle, 
WA: Author. 
Total Living Concepts, Inc. (1983). Employer's handbook for 
attendant services. Cincinnati, OH: Author. 
Total Living Concepts, Inc. (1983). Your tax responsibilities 
in employing personal care attendants. Cincinnati, OH: 
Author. 
Ulicny, G.R., Elwell, J.S, & Jones, M.L. (1984). Disabled 
employers can increase their attendant management skills. 
Independent Living Forum, 2, 1-7. 
Ulicny, G. & Jones, M. (1986). Step-by-step guide to training 
and managing personal care attendants. Kansas City, KS: 
University of Kansas, Research and Training Center on 
Independent Living. 
;

D 

j) 

) 


128 


APPENDICES 



G 


129 
APPENDIX A 


DEFINITION OF TERMS 


ACTIVITIES OF DAILY LIVING 


Any of the activities which must be performed in the course of 
daily living. These activities include dressing, bathing, 
grooming, getting around, eating, preparing meals, shopping, 
cleaning house and engaging in work, school, community service or 
recreation. 


ADULT DAY CARE 


Provision during the day, on a regular basis, at a site outside 
of the home, of health, medical, psychological, social, 
nutritional,educational and other services that a person with a 
disability needs in order to remain in the community. 


AREA AGENCY ON AGING (AAA) 


The local planning and service units designated by the Department 
of Aging to administer a program of comprehensive community 
services for the elderly. AAAs can be a part of county 
government or a private non-profit agency. 


ATTENDANT SERVICES 


Assistance from others which compensates for a person's 
diminished ability to perform activities of daily living on 
her/his own. As used in this report and by the National Council 
on the Handicapped, attendant services include assistance with 
personal maintenance and hygiene, mobility and household 
maintenance tasks. 


CASE MANAGEMENT 


Coordination of a number of services, provided by various 
agencies, which are needed by a single individual. It includes 
assessment of client need; development of an individualized 
service plan; arrangement of services; and reassessment. The 
goal of case management is both to avoid service duplication and 
to facilitate an individual's receiving all needed services. 


CHORE SERVICES 


Infrequent tasks related to home maintenance such as repairs and 
yard work. Under Title XX, personal care activities and other 
domestic services such as shopping and housecleaning are included 
in this definition as well. 



`P 

130 


COGNITIVE ASSISTANCE 


Assistance with life management activities such as money management, 
planning and decision making. 


COMMUNICATION ASSISTANCE 


Interpreting for people with hearing or speech disabilities. 


COMMUNITY BASED SERVICES 


Services provided in a disabled person's home or other settings 


(e.g. work, school, recreation) which enable the person to 
function in those settings. 
CONGREGATE HOUSING 


Multiple unit housing with shared common space and shared 
services for those disabled people who are not totally 
independent but who do not need institutional care. 


COST SHARING 


An arrangement allowing individuals with incomes above a certain 
minimum to receive services and pay a portion of the cost of 
those services according to a sliding scale based on income. 


DISINCENTIVES TO EMPLOYMENT 


Provisions of entitlement programs (such as SSI, SSDI and 
Medicaid) which discourage their beneficiaries from seeking 
and/or holding employment because to do so would result in loss 
of income and/or benefits. (See also footnote 4, page 7.) 


DISABILITY 


A person with a disability is any person who (i) has a physical 
or mental impairment which substantially limits one or more major 
life activities, (ii) has a record of such an impairment, or 


(iii) is regarded as having such an impairment. 
ESCORT 


Accompanying and/or assisting a client while traveling to 
necessary activities, such as medical appointments, shopping, 
school, etc. Many attendant programs limit escort services to 
medical appointments only. 


FUNCTIONALLY DISABLED 


An impaired ability to perform activities of daily living. 



131 


HOME DELIVERED MEALS 


Meals prepared at a central location and delivered to homes of 
people who are old or disabled on a daily basis or less 
frequently. 


HOME HEALTH AGENCY - See HOME HEALTH SERVICES 


HOME HEALTH AIDE 


Person who, under the supervision of a home health or social 
service agency, assists older, ill or disabled persons with 
household maintenance and personal maintenance and hygiene tasks, 
and paramedical tasks. Home health aides are usually trained by 
the Home Health Agency or by outside training programs. 


HOME HEALTH SERVICES 


Home health services are services and items furnished to an 
individual in his or her home by a home health agency. The 
services are furnished under a plan established and periodically 
reviewed by a physician and include: part-time or intermittent 
skilled nursing care; physical, occupational or speech therapy; 
medical social services, medical supplies and appliances (other 
than drugs and biologicals); home health aide services; and 
homemaker services. 


HOMEMAKER 


Person who, under the supervision and training of a home health 
or social service agency, assists older, ill, or disabled persons 
with household maintenance tasks and child care. 


HOUSEHOLD MAINTENANCE TASKS 


Cleaning, shopping, meal preparation, laundering, heavy cleaning 
and repairs. 


INTELLECTUAL DISABILITY 


Mental retardation 


INDEPENDENT LIVING PROGRAM (ILP) 


A community-based non-profit organization, usually controlled by 
disabled people, which provides a variety of services directed at 
enabling disabled people to live independently. Among these 
services are peer counseling, personal assistance/attendant 
referral, benefits counseling, Independent Living Skills 
training, housing referral, and advocacy to remove social, 
economic and environmental barriers. 



132 


INDIVIDUAL PROVIDER 


An attendant hired and supervised by a recipient. 


LONG TERM "CARE" 


The whole spectrum of services potentially needed by disabled and 
ill people of all ages. The range includes health care, social 
services, housing, transportation, income security and jobs. 


MEDICAID 


Joint federal-state program, created in 1965 by Title XIX 
(Medical Assistance) of the Social Security Act. It is 
administered by the states and pays for health care services for 
people with very low income. In some states it also pays for 
personal maintenance/hygiene services or attendants. 


MEDICARE 


Federal program, created in 1965 by Title XVIII (Health Insurance 
for the Aged) of the Social Security Act. It provides health 
insurance benefits primarily to persons over the age of 65 and 
others who are eligible for Social Security benefits. 


MENTAL DISABILITY 


Psychiatric illness 


MOBILITY 


Ability to move from one place to another. 


NURSING HOME PRE-ADMISSION SCREENING 


A process conducted prior to entry into a nursing home to assess 
a person's functional abilities and service needs in order to 
determine whether the individual can remain living in the 
community rather than enter a nursing home. 


PERSONAL ASSISTANCE SERVICES 


Assistance, under maximum feasible user control, with tasks aimed 
at maintaining well-being, personal appearance, comfort, safety 
and interactions within the community and society as a whole. 
These tasks include: personal maintenance and hygiene tasks, 
mobility tasks, household maintenance tasks, infant and child 
care related tasks, cognitive tasks, security related services 
and communication services. 



133 


PERSONAL MAINTENANCE AND HYGIENE TASKS 


Dressing, grooming, feeding, bathing, respiration equipment 
maintenance, and toilet functions such as bowel, bladder, 
catheter and menstrual tasks. 


PROTECTIVE SERVICE 


Activities to assist individuals who, because of mental or 
physical disability or family situation are unable to protect 
themselves from neglect, hazardous situations or abuse without 
assistance from others. 


RESPITE SERVICES - See SHORT-TERM SERVICES 


SECTION 1619 OF THE SOCIAL SECURITY ACT 


See footnote 4, page 7. 


SECURITY RELATED SERVICES 


Daily monitoring by phone, special alarm systems, etc. 


SHORT-TERM SERVICES 


Intermittent attendant services replacing family members or other 
assistants on a scheduled basis which enable the individual with 
a disability to receive the assistance needed and be independent 
of the family for brief periods while allowing the family members 
to leave the home for anywhere from a few hours to several weeks. 
Short-term services are part of the continuum of personal assistance 
services ranging from daily service to assistance for very 
short periods. 


SUPPLEMENTAL SECURITY INCOME (SSI) 


A federal income maintenance program which provides a flat 
monthly grant to people who are poor, disabled or old whose 
resources and other income fall within certain strict limits. 


SOCIAL SECURITY DISABILITY INCOME (SSDI) 


A federal income maintenance program for people who become 
disabled after they have wcrked a minimum period of time 
depending on age at onset of disability. Payment amounts are 
determined by the duration and level of a recipient's prior 
earnings. There are no limits on a recipient's resources or 
other non-work related income. 


STATE AGENCY ON AGING 


The state-level agency that oversees the work of the Area 
Agencies on Aging in each state. 



134 


TEACHING AND DEMONSTRATION 


Instructional services which enable recipients of attendant 
services to perform some or all of those services themselves. 
TELEPHONE REASSURANCE 
Daily or regularly scheduled telephone calls made by family, 


friends or volunteers to check on those who are homebound. 


Di 


)1 



135 

APPENDIX B 

METHODOLOGY 


Programs Surveyed and Persons Interviewed 


The programs surveyed included the entire population of 
programs offering personal maintenance and/or household/domestic 
service on a long-term basis and short-term (respite) programs 
for disabled people of all ages in the 50 states plus the 
District of Columbia. Protective service programs (those aimed 
at preventing abuse or neglect of adults and children) were 
included only if the program served people on a long-term basis. 

Several types of programs were not included. Due to cost 
considerations, programs only for people with mental illness 
(mental disability) or mental retardation (intellectual 
disability) were not included. In general, because of 
fragmentation of the service system, in many states these 
programs are separately administered and include a different 
service mix. 


Temporary services for acutely ill or abused/neglected 


people, or for those in transition from hospital, nursing home, 


or institution to the community were not included. Vocational 


Rehabilitation programs which provide personal assistance monies 


solely for those currently receiving vocational rehabilitation 


services were not included. Shared attendant programs in 


congregate living arrangements were not included. Finally, 


purely household/domestic service programs were not included if 


there was not a "personal care" program in the state with which 


the domestic program could be paired. 



136 


Identification of the programs was a time-consuming process. 
An Independent Living Program (ILP) in each state was asked to 
provide WID with a list of programs and program administrators in 
that state. Administrators of the Title XX, Title XIX, and Title 
III programs were contacted in every state to determine if these 
programs offered long-term "personal care", domestic/household 
services or respite. In addition, each person contacted was 
asked to identify other programs in the state. 


Selecting which programs to include was difficult. In 
general the administrator's judgment was relied on as to whether 
or not a program fit the criteria. However, there were three 
cases in which we completed the entire interview and then decided 
that, in fact, the program was not a long-term or short-term 


(respite) program for people with chronic disabilities. 


In general interview the administrator of the specific 
program or the head of the administering public agency .7as 
interviewed. In a few cases, the state agency delegated full 
responsibility for administration and data collection for the 
program to a Center for Independent Living (e.g. ALPHA I in 
Maine). In these cases the administrator of the attendant 
program at the Independent Living Center was interviewed. 


One hundred seventy-three (173) programs in the U.S. were 
identified as offering comprehensive or selected personal 
assistance services on a long-term or short-term (respite) basis. 
There were 154 programs included in the survey results. Three 
administrators refused to be interviewed. Three questionnaires 
arrived too late for inclusion in the data set. Thirteen Title 
III programs were not included because the State Agency on Aging 



n 

137 


had no overall statewide data on the programs in their state. 


Data Gathering Procedure 


Data were gathered primarily through two methods, telephone 
survey and mail survey. Only one survey was completed by culling 
through reports sent to us by the program administrator. Thirty-
six mail surveys were returned, of which were incomplete and had 
to be finished over the phone. One hundred eighteen (118) 
surveys were conducted entirely by phone. 


Telephone Survey Procedure 


The telephone survey was conducted from February to 
September, 1985. The procedure for the telephone surveys 
involved several steps. Potential respondents were identified as 
described above. These administrators were then called to verify 
that their program delivered some or all of the constellation of 
attendant services as we defined them. When an administrator 
agreed to be interviewed, an appointment was set at least two 
weeks hence. A copy of the questionnaire was then mailed 


immediately to the respondent so she or he could gather the 


necessary regulations and statistics for the interview itself. 


The interviews were conducte3 primarily by two members of the WID 


staff with some assistance from the principal investigator. AlI 


the completed questionnaires were reviewed by the principal 


investigator for internal consistency. If discrepancies were 


found, the respondent was called again to clarify the problem. 


Mail Survey Procedure 


The mail survey was conducted from September 1985 to mid-
January 1986. As in the phone survey, potential respondents were 



138 


first called to verify if the program met our definition of 
attendant services. If it did, the questionnaire was mailed for 
the respondent to fill out and return; if it was not returned in 
two weeks as requested, a reminder was mailed. If the survey 
still did not arrive, the respondent was called and a phone 
interview was arranged. All returned questionnaires were 
reviewed for internal consistency and respondents were called to 
clear up discrepancies. 


Instrumentation 


The questionnaire was developed by reviewing current reports 
on attendant services from Pennsylvania (Connell et al., 1986) 
and Texas (Nosek, 1986), and an extensive review of the 
literature. The questionnaire went through several revisions as 
a result of WID staff input. A more open-ended questionnaire was 
pretested in Illinois. A revised, more close-ended question 
format was tested again in Missouri, Colorado, Massachusetts and 
Connecticut, from which the final version was constructed. 


Reliability 


Responses to questions were intended to be based primarily 
on objective, written data in the form of agency rules, 
regulations, budgets and annual reports. Consequently it was 
assumed that the answers were unaffected by who the respondent 
was, the date of the interview or the date the questionnaire was 
completed. 


However, states vary markedly in the sophistication or even 


the existence of management information systems, annual reports 


and even regulations. In some cases, respondents appeared not to 



139 


have a particularly good grasp of their programs, because either 
management information systems were poor or the administrator was 
new to the program or not close enough to the day-to-day 
administration of the program to know precisely the services 
offered, eligibility requirements, and the like. In the latter 
situation, when an administrator knew little about a particular 
program aspect, we attempted to interview other people involved 


in program administration to flesh out the data. 


The expenditure and case load data are not as precise as one 
would want for several reasons. First, programs varied in their 
use of fiscal or calendar year. We asked for FY 83/84 or 
calendar year 1984 data whenever possible. Two programs could 
only provide 1983 data, twenty-eight programs had information for 
FY 84/85 only and three programs gave us their budget estimates 
and case load goals for FY 85/86. No attempt was made to convert 
these figures to 1984 levels using the consumer price index or 
other means. 


Second, the expenditure and case load data is not precise 
because data collected from seven programs serving older people 
were not included. Administrators of these programs could not 
break out expenditures and numbers using attendant services from 
the total program. In these seven programs the bulk of the 
program appeared to be aimed at home-delivered meals and adult 
day "care" programs. Their inclusion would have greatly 
distorted the expenditure and case load data. 


Finally, it must be noted that we were trying to capture a 


moment in time in a constantly shifting picture. Since we 


stopped conducting interviews, several new programs have been 



140 
implemented and several no longer exist. By the time this 
document is published, more may start. In addition, several 
states are actively in the process of modifying existing 


 


programs.At least one state is looking into consolidation of 


1'


all its programs. Other states are considering or have already 
changed eligibility criteria. And, as discussed in the body of 
the report, Section 1619 of the Social Security Act should have a 
major effect on who is eligible for attendant services. 


Validity 


The key aspect of validity that must be considered here is 
whether the concepts and definitions established here were 
sufficiently clear and precise to insure that anyone else doing 
the survey would arrive at the same results. In particular, much 
rests on whether the programs surveyed in fact are short-term 


(respite), personal management/hygiene, household maintenance or 


attendant programs including both types of services, which serve 


people who are disabled on a long term basis. 


It is possible that some programs surveyed do not in fact 
meet these criteria. Distinguishing Medicaid "personal care" 
programs which are aimed mainly at people who are chronically ill 
and in need of significant amounts of medical services on an 
intermittent basis from attendant programs was especially 
difficult. Often we had to rely on the administrator's judgments 
as to whether their programs fit our criteria. The opposite 
problem occurred with program administrators who had a very 
narrow conception of attendant services, e.g. programs for 
severely disabled working age people who are employed or 


employable. In these cases, we had to push administrators to 



141 


agree that if, for example, their program served older people for 


only an hour or two a week on a regular basis, that it was in 


fact an attendant service program. 


Finally, we may also have missed some programs that should 
have been surveyed because none of our informants in a state knew 
about the program. 


There is another issue surrounding the validity of the 
results which must also be mentioned. At times, respondents told 
us that there was a difference between what a program was 
actually like and what it was supposed to do on paper. In 
particular, we found that on paper some programs providing 


services through independent providers did not offer assistance 
with catheters, medication and injections, but that providers 
actually did perform such services. In order to avoid the discrepancy, 
we asked respondents to tell us what was in the program 
rules and regulations, but this may not always have occurred. 


Operational Definitions 


All variables used in this report, except "need for 
attendant services", are derived from answers to the 
questionnaire (Appendix C). 


Administering Agency 


Administering agency was created by establishing seven 
categories: 1) General Social Service Agencies included 
Departments of Social Services, Human Resources, Community 
Services or Public Welfare, and Mixed Departments like Health and 
Rehabilitation Services; 2) State Agencies on Aging; 3) State 
vocational rehabilitation agencies; 4) Medical Assistance 



142 


Agencies; 5) State Health Departments; 6) Centers for Independent 
Living; and 7) Other miscellaneous administering agencies for 
developmental disability, visual disability and spinal cord 
injury. 


Age Groups Served and Eligible 


For age groups eligible, several categories were derived: 
1) All ages, 2) 18 and above, 3) 60 or 65 and above, 4) 18-60 or 
64, 5) Less than 18, 6) Less than 60 or 65. Because Title III 
uses 60 as the cut-off point and most other programs use 65, the 
cut-off in programs serving older adults was not sharp. 


For age groups served, in addition to the variations 
regarding the age cut-off for older adults, many programs could 
not specify the percentage of clients under 18 years old or over 


75. So age groups served was only broken into two categories: 1) 
Less than 60 or 65, and 2) More than 60 or 65. 
Average Hourly Reimbursement Rate 


Average hourly reimbursement rate to contract agencies was 
determined in two ways. If an administrator could answer the 
question directly, then that answer was used (n=50, 42%). If an 
administrator could only speak in terms of reimbursement for each 
type of worker (n=37), e.g. home health aide, chore worker and/or 
housekeeper, then an average rate was derived from the highest 
and lowest of these reimbursement rates. Every attempt was made 
to include only those professions which provide attendant 
services in these figures, so the reimbursement rates for health 
personnel such as registered nurses and the various types of 
therapists were excluded from the range. 



143 
Average Hourly Wage 


0 Average hourly pay for attendants was determined differently 
for each type of provider. For individual providers and government 
employees, if the administrator could answer the question 

(") directly, that answer was used. If the answer was given in terms 
of a salary range, then the lower end of the range was used. If 
the salary was in terms of days, e.g. $20/day, then that salary 
figure was divided by the number of hours to be worked. 


The administrators of 26 contract programs were able to 
state what the average wage rates were in their programs. In 
another 37 cases, however, administrators could only give the 
wages for specific types of workers, such as home health aides 
and housekeepers. Again, excluding health personnel such as 


O 

R.N.s and therapists, the average of the lowest and highest of 
these rates was used, as above. 


Average Number of Benefits


U 


Average number of benefits provided was obtained by giving 
one point for each of seven benefits the program actually 


provides and averaging the sum across all the programs within a


L.) 


particular provider type. 


Disability Groups Served and Eligible 


Although the questionnaire asked respondents to indicate 
whether they served people with developmental disabilities using 
three different definitions, it became clear that there were wide 
discrepancies in the use of the term. In order to decrease the 
confusion, only four categories for disability were used: 1) 
physical disability, 2) brain injury, 3) mental illness, and 4) 



144 


mental retardation. 


Expenditure Per Client 


Expenditure per client per year was computed by dividing 
expenditures by the number of clients. For all programs, the 
expenditure and client figures used were parallel. Expenditures 
and clients for attendant services only (n=91) were preferred. 
If one or the other or both were not available, then expenditures 
and clients in the total program were used (n=30). However, if 
the total program included home-delivered meals or adult day 
care. Then expenditure per client was not computed. 


Funding Sources 


If a program received funding from a federal program and 
combined that with state or local funds, that program was counted 
only as a federally-funded program under the appropriate federal 
Title or mix of Titles. 


Graduated Shared Cost Formula 
Whether programs employed a graduated shared cost formula 
was determined directly from the answer to that question in the 
survey. 


Hours Services Available 


Hours Services Available was defined by whether programs 


offered services 24 hours a day, 7 days a week as determined by 


answers to two questions in the survey instrument. 


Income Eligibility and Poverty Level 
Income eligibility was determined by asking for the highest 
amount an individual could earn and still be eligible for the 



145 


program, taking into account graduated shared cost formulas and 
deductions from income for disability-related and other expenses. 
It was difficult for many administrators to answer this questions 
with precision. 


Poverty level was determined by one of two criteria: 1) the 
income eligibility level stated was at or below the poverty level 
as outlined by the U.S. Department of Health and Human Services 
(1985), and 2) no income eligibility level was stated but the 
program only accepted people who received or were eligible for 
SSI, SSDI or Medicaid. 


Independent Living Score 


A program's independent living score was computed by giving 


a score of 1 for a positive answer to the following 10 items: 1) 


no medical supervision, 2) offers attendant services with 


catheterization, 3) service limit of 20 hours/week or more, 4) 


services available 24 hours a day, 7 days a week, 5) income limit 


greater than or equal to 150% of the poverty level for a single 


person, 6) independent providers allowed, 7) user hires and fires 


the attendant, 8) user pays the attendant, 9) user trains the 


attendant, and 10) user participates in deciding the number of 


hours and type of services she or he requires. The higher the 


score, the greater the conformity to the Independent Living model 


of service delivery. 


Maximum Service Amount Allowed 


Programs stated the maximum amount of services allowed in 


two ways: 1) Number of hours per week, month or year, or 2) 


Monthly financial allowance or ceiling. If limits were defined 



146 


by numbers of hours per month or year, these were converted to 
number of hours per week on the assumption that the hours were 
equally spread - but there were programs that allowed for 
fluctuations within a year or over a month and did not cut off 
service. The monthly allowances or ceilings were converted into 
number of hours allowed per week by dividing by the average 
hourly wage for all types of attendants ($4.41/hour) and further 
dividing by 4 to get a weekly figure. Programs that gave the 
maximum amount of service allowed in terms of visits were not 
included because visits could be much less or much more than an 
hour long. Once all the service limits were converted to hours, 
programs could then be divided into those which allowed for 20 )1 
hours or more of service per week and those which did not - a 
measure of the severity of the disabilities of the program users. 
Medical Supervision Required 
Whether medical supervision was required was determined by 
adding together those programs that required supervision of all 
)1 
services and those requiring medical supervision of only some 
services. 
Need for Attendant Services 
Need for attendant services was defined by results from the 
Home Care Supplement to the 1979-1980 National Health Interview 
Survey in which respondents were asked whether they received or 
needed the assistance of another person in performing seven basic 
physical activities. The physical activities included: walking, 
going outside, bathing, dressing, using the toilet, getting in or 
out of bed or chair, and eating. The percentage of people in 


147 


each age group needing help with one or more activities was then 
used to estimate the number needing help, utilizing 1985 
population census data. 


Purpose of Program 


Purpose was split into three categories by combining answers 
to the question on purpose: 1) Prevention of institutionalization 
and enabling people to stay in their own homes were 
combined, 2) Allowing people to work and still receive financial 
aid for attendant services and financial aid to employed or 
employable were combined, and 3) cost containment. 


Relatives Allowed as Attendants 


Whether relatives were allowed to be paid attendants was 
determined by whether one of the four closed-ended questions or 
the open-ended question regarding circumstances under which 
relatives can be paid were answered. If none of these questions 
was answered in the affirmative, then it was deduced that 
relatives were not paid to be attendants by the program. 


Services Offered 


Services offered was determined by answers to 33 close-ended 


questions in the survey instrument. Administrators were asked to 


state what existed in the regulations, not what custom allowed. 


In addition, a core of services was defined in order to determine 


if a minimum set of services was being delivered by any 


particular program. The personal maintenance/hygiene services 


core included feeding, bathing, dressing, bowel and bladder care, 


oral hygiene, and grooming and transfers. The household 



148 


maintenance core included light cleaning, laundry, shopping, meal 
preparation and clean-up. Attendant services were defined as 
programs that combined both personal maintenance/ hygiene and 
household maintenance services. In addition, personal 
maintenance and attendant services were described as being 
offered with or without catheter assistance. 


Total Expenditures 


Total attendant program expenditures were based on answers 
to one of two questions. If the administrator could state the 
total expenditure just on attendant services, that was the figure 
used (n=110). If the attendant service expenditures could not be 
broken out from total program expenditures, then total program 
expenditures were used (n=30). However, if adult day care and/or 
home-delivered meals were part of the total program, then the 
expenditure figure was not used at all because it would greatly 
inflate program costs. Also, if medically oriented services were 
included in the total program expenditure figure, that figure was 
not used. 


Total Number of Clients 


Total number of clients was defined by the answer to two 


questions. If an administrator could state the total number of 


clients receiving just attendant services, that was the figure 


used (n=104). If attendant services users could not be broken 


out from the rest of the program clients, the number of clients 


in the total program was used (which was the case for 20% of the 


programs, n=28). However, if the total program included adult 


day care and/or home-delivered meals, the client figure was not 



149 


used at all because it would have greatly inflated the number of 
attendant users, particularly in Title III programs. The client 
figures for programs that could not separate attendant service 
users from the regular Medicaid program was also not used. 


Type of Provider 


Type of provider was defined by answers to the questions 
regarding type of provider in the survey instrument which had 
three categories: 1) self-employed individuals, 2) contract 
agencies, and 3) local government unit staff. 


Year Program Implemented 
The year program was implemented was based directly on 
answers to that question. 


Suggestions for Further Research 


Following are questions for further research, answers to 
which would help to fill out the picture of attendant service 
delivery in the United States: 


1) How many people are in need of publicly-funded 


attendant services? 


a) How many people could leave nursing homes and 


institutions if adequate attendant services were 


available in their home community? 


b) To what extent do people of all ages needing 


personal assistance rely on unpaid/volunteer labor 


of family and friends? 


2) Are consumers in more independent living-oriented 


programs more satisfied with personal assistance 


services they receive than people in more medically



150 


oriented programs? 
3) How do unit costs (e.g. cost per service hour) 
compare across the different personal assistance 
programs? 
4) What is the impact of personal assistance services 
on the development of children and teenagers? 
5) To what degree do personal assistance users 
participate in personal assistance program policy 
determination, administration and staff training? 
6) What are all the other disability-related costs 
personal assistance users have to bear in order to 
function independently in the community, e.g. equipment 
replacement and repair, housing and clothing adaptations, 
medical insurance (if available), transportation? 
7) How do personal assistant services vary for people 
with mental, intellectual or physical disabilities? 
Can services be adequately combined? 


8) How do personal assistance programs compare in terms 
of quality? 
9) How can outreach to potential personal assistance 
users be made more effective? 
10) What other personal assistance services could 
people who are disabled use, e.g. emergency backups, 
child maintenance assistance? 
11) What could contribute to increasing provider satis


faction and decreasing turnover? 
12) How would providing personal assistants on the job 



151 


contribute to increasing the employment of disabled 
people? 
13) Are people who rely on the assistance of volunteers 


(family and friends) less independent? less productive? 
14) What is the economic and emotional impact on 
families who provide the bulk of attendant services for 


the family member who is disabled? 



D 

J 


152 


APPENDIX C 


SOURCES OF ATTENDANT SERVICES IN THE UNITED STATES 


Alabama 


Community Alternative Services 
Alabama Medicaid 
2500 Fairlane Dr. 
Montgomery, AL, 36130 


Community Services Program (Title III) 
Commission on Aging 
502 Washington Ave. 
Montgomery, AL, 36130 


Homebound Program 
Division of Rehabilitation 
& Crippled Children's Services 
2129 E. South Blvd. 


P.O. Box 11586 
Montgomery, AL, 36111-0586 
Optional Supplement of SSI 
Department of Pensions and Securities 
64 N. Union St. 
Montgomery, AL, 36104 


Alaska 


Homemaker Program 
Department of Health and Social Services 
Pouch H-05 
Juneau, AK, 99811 


Title III Services 
Older Alaskans Commission 
Pouch-C, Mail Stop 0209 
Juneau, AK, 99811 


Arizona 


Pima County Community Services System 
Aging and Medical Services Department 
2250 N. Craycroft 
Tucson, AZ, 85712 


Arkansas 


In-Home Services Program 
Department of Human Services 
Donaghey Building 
7th and Main 
Little Rock,AR, 72201 



j


153 


Spinal Cord Commission Program 
Spinal Cord Commission 
2020 W. 3rd, Ste. #2-H 
Little Rock, AR, 72205 


Title III In-Home Services Program 
Central Arkansas Area Agency on Aging 
706 W. 4th, P.O. Box 5988 
North Little Rock, AR, 72119 


California 


Community Services Program--Title III 
Department of Aging 
1020 19th St. 
Sacramento, CA, 95814 


In-Home Medical Care Waiver 
Department of Health Services 
714 P St. Rm. #1640 
Sacramento, CA, 95814 


In-Home Supportive Services 
Department of Social Services 
744 P. St., M-S 9536 
Sacramento, CA, 95814 


Multipurpose Senior Services Program (Frail Elderly Waiver) 
Department of Aging 
1600 9th St. Rm. #456 
Sacramento,CA, 95814 


Colorado 


Home- and Community-Based Service Program 
Department of Social Services 
1575 Sherman Ave. 
Denver, CO, 80203 


Home Care Allowance 
Department of Social Services 
1575 Sherman St. Rm. #803 
Denver, CO, 80203 


Medicaid Home Health Agency Services 
Bureau of Medical Services 
Department of Social Services 
1575 Sherman, Room 803 
Denver, CO, 80203 


Supportive Services 
Division of Aging and Adult Services 
1575 Sherman St. Rm. #803 
Denver, CO, 80203 



154 


Connecticut 


Essential Services Programs 
Department of Human Resources 
110 Bartholomew Ave. 
Hartford, CT, 06106 


Fairfield County Home- and Community-Based Waiver 
Department of Income Maintenance 
110 Bartholomew Ave. 
Hartford, CT, 06106 


Medicaid Home Health Care Services 
Department of Income Maintenance 
110 Bartholomew Ave. 
Hartford, CT, 06106 


Personal Care Assistance Program 
Department of Human Resources 
110 Bartholomew Ave. 
Hartford, CT, 06106 


Promotion of Independent Living 
Department on Aging 
175 Main St. 
Hartford, CT, 06106 


Delaware 


Homemaker Program 
Division of Economic Services 
Delaware State Hospital 


P.O. Box 906 
New Castle, DE, 19720 
Medical Assistance Program 
Delaware State Hospital, Biggs Bldg. 
New Castle, DE, 19720 


Florida 


Community Care for Disabled Adults 
Department of Health and Rehabilitative Services 
1317 Winewood Blvd. 
Bldg 2, Ste. #328 
Tallahassee, FL, 32301 


Community Care for the Elderly 
Health and Rehabilitative Services 
1321 Winewood Blvd. 
Tallahassee, FL, 32301 


Elderly Waiver/Physically Disabled and Infirm Elderly 
Health and Rehabilitative Services 
1317 Winewood Blvd. 
Tallahassee, FL, 32301 



155 


Home Care for the Elderly 
Department of Health and Rehabilitative Services 
1317 Winewood Blvd., Building 2 
Tallahassee, FL, 32301 
Title III Program 
Department of Health and Rehabilitative Services 
1317 Winewood Blvd. 
Bldg 2, Rm. #321 
Tallahassee, FL, 32301 
r. 
Georgia 1 
Community Care for the Elderly 
Office of Aging 
878 Peachtree St. N.E. 
Atlanta, GA, 30309 
Homemaker Program 
Department of Human Resources 
878 Peachtree St., N.E. 
Atlanta, GA, 30309 
Title III In-Home Services Program 
Office of Aging 
878 Peachtree St., N.E. 
Atlanta, GA, 30309 
Hawaii 
Chore Services Program 
Department of Social Services and Housing 
P.O. Box 339 
Honolulu, HI, 96809 
Nursing Home Without Walls 
Community Long-Term Care Services 
Department of Social Services and Housing 
33 S. King St., Rm. #223 
Honolulu, HI, 96813 
Title III Program 
Area Agency on Aging 
650 S. King St. 
Honolulu, HI, 96813 
Idaho 
Homemaker Program 
Idaho Office for the Elderly 
State House 
Boise, ID, 83720 
Special Targeted Home- and Community-Based Service Waiver 
Department of Health and Welfare 
450 W. State, 6th Floor 
Boise, ID, 83720 


156 


Statewide Home- and Community-Based Care (Personal Care Waiver) 
Department of Health and Welfare 
450 W. State, 6th Floor 
Boise, ID, 83720 


Illinois 


Community Care Program 
Illinois Department on Aging 
421 E. Capitol Ave. 
Springfield, IL, 62706 


Home Services Program 
Department of Rehabilitation Services 
622 E. Washington 
Springfield, IL, 62705 


Indiana 


Home Care Services and Aging Programs 
Department on Aging and Community Services 
251 N. Illinois St., Capitol Center 
Indianapolis, IN, 46204 


Medicaid Home Health Program 
Department of Public Welfare 
100 N. Senate 
Indianapolis, IN, 46204 


Medicaid--Waivered Services 
Department of Public Welfare 
100 N. Senate 
Indianapolis, IN, 46204 

Title III--In-Home Services 
Department on Aging and Community Services 
251 N. Illinois St., Capitol Center 
Indianapolis, IN, 46204 

Iowa 


Homemaker Health Aid 
Iowa Department of Health 
Lucas State Office Building 
Des Moines, IA, 50319 


In-Home Health Program 
Department of Human Services 
Hoover Building, 5th Floor 
Des Moines, IA, 50319 


Kansas 


Alternate Care Program 
Department of Social and Rehabilitation Services 
1st Floor Biddle Bldg. 
2700 W. 6th 
Topeka, KS, 66606 



157 


Home- and Community-Based Services Waiver Program 
Department of Social and Rehabilitation Services 
1st Floor Biddle Bldg. 
2700 W. 6th 
Topeka, KS, 66606 


Homemaker Program 
Department of Social and Rehabilitation Services 
1st Floor Biddle Bldg. 
2700 W. 6th 
Topeka, KS, 66606 


Title III Program 
Department on Aging 
610 W. 10th 
Topeka, KS, 66612 


Kentucky 


Bluegrass Home- and Community-Based Service Waiver 
Division of Medical Assistance 
Cabinet of Human Resources 
275 E. Main St. 
Frankfort, KY, 40601 


Home Care Program (60+) 
Division of Aging Services 
Cabinet of Human Resources Building 
Frankfort, KY, 40621 


Personal Care Attendant Program 
Department of Social Services 
Cabinet of Human Resources Building 
Frankfort, KY, 40621 


Louisiana 


In-Home Services Program (Title III) 
Governor's Office of Elderly Affairs 


P.O. Box 80374 
Baton Rouge, LA, 70898 
Maine 


Attendants for Employed People 
Alpha I 
169 Ocean St. 


S. Portland, ME, 
Attendants for Unemployed People 
Alpha I 
169 Ocean St. 
S. Portland, ME, 
Home- and Community-Based Waiver Program 
Department of Human Services 
State House Station II 
Augusta, ME, 04333 



158 


Homebased Care Program 
Department of Human Services 
State House Station II 
Augusta, ME, 04333 


Support Services 
Bureau of Social Services 
221 State St. 
Augusta, ME, 04333 


Maryland 


Attendant Care Program 
Division of Vocational Rehabilitation 
200 W. Baltimore St. 
Baltimore, MD, 21201 


Gateway II 
Office on Aging 
301 W. Preston, Rm. #1004 
Baltimore, MD, 21202 


In-Home Aide Services 
Department of Human Resources 
300 W. Preston Rm. #403 
Baltimore, MD, 21201 


Personal Care Program 
Department of Health and Mental Hygiene 
300 W. Preston Rm. #206 
Baltimore, MD, 21201 


Title III In-Home Services Program 
Office on Aging 
301 W. Preston, Rm. #1004 
Baltimore, MD, 21201 


Massachusetts 


Home Care Program 
Executive Office of Elder Affairs 
38 Chauncy St. 
Boston, MA, 02111 


Home Care Waiver Program 
Department of Public Welfare 
Medicaid Division Rm. #740 
600 Washington St. 
Boston, MA, 02111 


Independent Living Personal Care Program 
Medicaid--Department of Public Welfare 
600 Washington St. Rm. #740 
Boston, MA, 02111 



159 


In-Home Services for the Blind 
Commission for the Blind 
110 Tremont St. 
Boston, MA, 02108 


Personal Care Program 
Massachusetts Rehabilitation Commission 
Statler Office Building 
Boston, MA, 02116 


Title III 
Executive Office of Elder Affairs 
38 Chauncy St. 
Boston, MA, 02111 


Michigan 


Alternative Care Program 
Office of Services to the Aging 


P.O. Box 30026 
Lansing, MI, 48909 
Home Help Program 
Department of Social Services 
Commerce Bldg Ste. #710 
300 S. Capitol 
Lansing, MI, 48912 


Model Home- and Community-Based Services 
Medicaid Policy and Reimbursement Division 


P.O. Box 30037 
Lansing, MI, 48909 
Minnesota 


Personal Care Services Program 
Department of Human Services 
Space Center 
444 Lafayette Rd. 
St. Paul, MN, 55101 


Title III--In-Home Services Program 
Board on Aging 
204 Metro Square 
7th and Robert 
St. Paul, MN, 55101 


Mississippi 


Homemaker Program 
Council on Aging 
301 West Pearl St. 
Jackson, MS, 39201 


Independent Living--Attendant Care Pilot Program 
State Department of Rehabilitation Services 


P.O. Box 1698 
Jackson, MS, 39215-1698 
)1 



160 


Missouri 


Disabled Children's Home- and Community-Based Waiver 
Department of Social Services 
308 E. High St. 
Jefferson City, MO, 65101 


Home- and Community-Based Waiver for the Aged 
Department of Social Services 
308 E. High St. 
Jefferson City, MO, 65101 


Personal Care Assistance Program 
Division of Vocational. Rehabilitation 
2401 E. McCarty 
Jefferson City, MO, 65101 


Personal Care Services 
Department of Social Services 
308 E. High St. 
Jefferson City, MO, 65101 


Title III--Chore Homemaker 
Department of Social Services 


P.O. Box 1337 
Jefferson City, MO, 65102 
Title XX--SSBG In-Home Service Program 
Division on Aging 
Broadway State Office Building, 


P.O. Box 88 
Jefferson City, MO, 65103 
Montana 


Home Attendant Program 
Department of Social and Rehabilitation Services 
Box 4210 
Helena, MT, 59601 


Home Attendant/Chore Program 
Department of Social and Rehabilitation Services 
Box 4210 
Helena, MT, 59601 


Home- and Community-Based Services Program 
Department of Social and Rehabilitation Services 
111 Sanders 
Helena, MT, 59601 


Personal Care Attendant Program 
Department of Social and Rehabilitation Services 
111 Sanders 
Helena, MT, 59601 



161 


Nebraska 


Chore Services Program 
Department of Social Services 
Box 95026 
Lincoln, NE, 68509 


Disabled Persons & Family Support Program 
Department of Social Services 
Box 95026 
Lincoln, NE, 68509 


Long-Term Care Program 
Department of Social Services 
Box 95026 
Lincoln, NE, 68509 


Title III In-Home Services Program 
Department on Aging 
Box 95044 
Lincoln, NE, 68509 


Nevada 


Aging Services 
Department of Human Resources 
505 E. King St. Rm. #101 
Carson City, NV, 89710 


Attendant Care Program 
Northern Nevada CIL 
190 E. Liberty 
Reno, NV, 89501 


Homemaker Services 
Welfare Division 
251 Jeannell Dr. 
Carson City, NV, 89710 


Medicaid Home Health Program 
Department of Human Resources 
251 Jeannell Dr. 
Carson City, NV, 89710 


New Hampshire 


Adult Services 
Department of Human Services 
Division of Welfare 
Hazen Dr. 
Concord, NH, 03301 


Home- and Community-Based Care 


for the Elderly and Chronically Ill 
Office of Medical Services 
Hazen Dr. 
Concord, NH, 03301 



162 


Personal Care Attendant Program 
Office of Medical Services 
Hazen Dr. 
Concord, NH, 03301 


Title III-B In-Home Services 
State Council on Aging 
105 Loudon Rd. 
Concord, NH, 03301 


New Jersey 


Community Care Program for Elderly and Disabled 
Division of Medical Assistance and Health Services 
CN 715 
Trenton, NJ, 08625 


In-Home Services Program (Title III) 
Division on Aging 
363 W. State St. 
Trenton, NJ, 08625 


Model Waiver (Home- and Community-Based Services for Blind or 
Disabled Children and Adults) 
Division of Medical Assistance and Health Services 
CN 715 
Trenton, NJ, 08625 


Personal Attendant Program 
Department of Human Services 
222 South Warren Street, 2nd Floor 
CN700 
Trenton, NJ, 08625 


Personal Care Assistant Program 
Division of Medical Assistance and Health Services 
CN 715 
Trenton, NJ, 08625 


New Mexico 


Coordinated Community In-Home Care for the Aged and Disabled 
Human Service Department 


P.O. Box 2348 
PERA Bldg. Rm. #418 
Santa Fe, NM, 87504 
Critical In-Home Care Program 
Department of Social Services 


P.O. Box 2348 
PERA Bldg. Rm. #516 
Santa Fe, NM, 87504 
Homemaker Program--Title XX 
Social Services Division 


P.O. Box 2348 
Santa Fe, NM, 87504-2348 

163 


Title III--In-Home Services 
State Agency on Aging 
2214 East Palace Ave. 
Santa Fe, NM, 87501 


Waiver for Medically Fragile Children 
Human Service Department 


P.O. Box 2348 
PERA Bldg. Rm. #418 
Santa Fe, NM, 87504 
New York 


Disabled Children's Program 
Office of MR & DD 
44 Holland Ave. 
Albany, NY, 12229 


Long-Term Care Project 
Division of Medical Assistance 
40 N. Pearl St. 
Albany, NY, 12243 


Personal Care Services 
Department of Social Services 
1 Commerce Plaza 
Albany, NY, 12237 


Respite Demonstration Project 
Department of Social Services 
40 N. Pearl St. 
Albany, NY, 12243 


Title III-B and Community Services for the Elderly 
Office for the Aging 
Empire State Plaza 
Bldg 2, 4th Floor 
Albany, NY, 12243 


Title XX Program 
Department of Social Services 
40 N. Pearl St., 9th Floor 
Albany, NY, 12243 


North Carolina 


Attendant Care Program 
Metrolina Independent Living Center 
1012 S. Kings Drive, Suite G-2 
Charlotte, NC, 28283 


Community Alternatives Program 
Division of Medical Assistance 
1985 Umstead Dr. 
Raleigh, NC, 27603 



--••••11111 

164 


Homemaker/Chore Program (Title XX) 
Division of Social Services 
325 N. Salisbury St. 
Raleigh, NC, 27611 


In-Home Services Program (Title III) 
Division on Aging 
1985 Umstead Dr. 
Raleigh, NC, 27603 


North Dakota 


Personal/Attendant Care Program 
Department of Human Services 
Capitol Building 
Bismarck, ND, 58505 


Ohio 


Assistance for Independent Living 
Department on Aging 
51 W. Broad St., 9th Floor 
Columbus, OH, 43266-0501 


Homemaker-Home Health Aide Demonstration Project 
(Title XIX Waiver) 
Department of Human Services 
30 E. Broad St. 
Columbus, OH, 43215 


Passport 
Department of Human Services 
30 E. Broad St. 
Columbus, OH, 43215 


Personal Care Assistance Program 
Rehabilitation Services Commission 
4656 Heaton Rd. 
Columbus, OH, 43229 


Title III--In-Home Services 
Department on Aging 
50 West Broad St. 
Columbus, OH, 43266-0501 


Title XX--In-Home Services 
Department of Human Services 
30 E. Broad St., 30th Floor 
Columbus, OH, 43125 


Oklahoma 


Home Maintenance Aide Program 
Department of Human Services 


P. O. Box 25352 
Oklahoma City, OK, 73125 

165 


Non-Technical Medical Care 
Department of Human Services 
312 N.E. 28th 
Oklahoma City, OK, 73125 


Title III In-Home Services Program 
Department of Human Services 


P.O. Box 25352 
Oklahoma City, OK, 73125 
Oregon 


In-Home Services 
Senior Services Division 
313 Public Service Bldg 
Salem, OR, 97310 


Pennsylvania 


Attendant Care Demonstration Program 
Department of Public Welfare 
Rm. #529, Health and Welfare Building 
Harrisburg, PA, 17120 


Attendant Care Services for Older Adults 
Department of Aging 
231 State St. 
Harrisburg, PA, 17101 


Community-Based Services 
Department of Aging 
231 State St. 
Harrisburg, PA, 17101 


Rhode Island 


Homemaker Program 
Department of Human Services 
600 New London Ave. 
Cranston, RI, 02920 


Independent Living Rehabilitation Program 
Vocational Rehabilitation 
40 Fountain St. 
Providence, RI, 02903 


In-Home Services Program 
Department of Elderly Affairs 
79 Washington St. 
Providence, RI, 02903 


Medicaid Waiver Program 
Division of Medical Services 
600 New London 
Cranston, RI, 02920 


Pi 

JI 


Pi 


166 


South Carolina 


Community Service Program (Title III) 
Commission on Aging 
915 Main St. 
Columbia, SC, 29201 


Home- and Community-Based Waivered Services Program 
Health and Human Services Finance Commission 


P. 0. Box 8206 
Columbia, SC, 29202-8206 
SSBG--Homemaker Program 
State Health and Human Services Finance Commission 


P.O. Box 8206 
Columbia, SC, 29202 
South Dakota 


Attendant Care Program 
Adult Services and Aging 
700 N. Illinois St. 
Pierre, SD, 


Attendant Care Program 
Prairie Freedom Center for Disabled Independence 
800 West Ave., North 
Sioux Falls, SD, 57104 


Homemaker/Home Health Aide Program 
Adult Services and Aging 
700 N. Illinois St. 
Pierre, SD, 


Tennessee 


Title III--In-Home Services 
Commission on Aging 
Tennessee Bldg, Ste. #710 
535 Church St. 
Nashville, TN, 37219 


Texas 


Family Care Program 
Department of Human Resources 
Mail Code 543-W, P.O. Box 2960 
Austin, TX, 78769 


1915-C Model Waiver 
Department of Human Resources 


P.O. Box 2960, Mail Code 540 W. 
Austin, TX, 78769 

167 


Primary Home Care Program 
Department of Human Resources 
Mail Code 543-W, P.O. Box 2960 
Austin, TX, 78769 


Title III--In-Home Services 
Department on Aging 


P.O. Box 12786, Capitol Station 
Austin, TX, 78711 
Utah ) 


Homemaker--Personal Care Program 
Division of Aging and Adult Services 
105 W. North Temple 
Salt Lake City, UT, 84103 


Personal Attendant Care Program 
Department of Social Services 
150 W. North Temple Ste. #234 
Salt Lake City, UT, 84103 


2176 Waiver---Home- and Community-Based Services Program 
Department of Health 
150 W. North Temple 


P.O. Box 45500 
Salt Lake City, UT, 84145 
Vermont 


Participant Directed Attendant Care 
Vocational Rehabilitation Division 
Osgood Guilding 


 


Waterbury, VT, 05676


) 
Personal Services Program 
Division of Social Services 
103 S. Main St. 
Waterbury, VT, 05676 


Virginia 


Adult Services Program--Homebased Services 
Department of Social Services 
8007 Discovery Dr. 
Richmond, VA, 23288 


Homemaker/Personal Care, Home Health Aide, 


or Companion Program (Title III) 
Department for the Aging 
101 N. 14th St., 18th Floor 
Richmond, VA, 23219 


In-Home Personal Care Services 
Department of Medical Assistance Services 
109 Governor St. 
Richmond, VA, 23219 



168 


Washington 


Chore Services Program 
Department of Social and Health Services 
Office Building 43-G 
Olympia, WA, 98504 


Comprehensive Options Program Entry System 
Bureau of Aging and Adult Services 
Office Building, 43-G 
Olympia, WA, 98504 


West Virginia 


Chore Services Program 
Deptartment of Human Services 
1900 Washington St. E. 
Charleston, WV, 25305 


Home- and Community-Based Services 


Medicaid Waiver for the Elderly and Disabled 
Department of Human Services 
1900 Washington St., E, Bldg. 6 
Charleston, WV, 25305 


Wisconsin 


Community Options Program 
Office of Program Initiative 
1 W. Wilson Rm. #314 
Madison, WI, 53707 


Family Support Program 
Developmental Disabilities Office 


P.O. Box 7851 
Madison, WI, 53707 
Katie Beckett Waiver Program 
Department of Health and Human Services 


P.O. Box 309 
1 W. Wilson St. 
Madison, WI, 53701 
Medicaid Home Health Program 
Department of Health and Human Services 


P.O. Box 309 
1 W. Wilson St. 
Madison, WI, 53701 
Respite Care Project 
Division of Community Services 
Office on Aging 
Room 480, One W. Wilson Street 
Madison, WI, 53707 



169 


Supportive Home Care--Title XX 
Office of Program Initiative 
Division of Community Services 
1 W. Wilson St. Rm. #314 
Madison, WI, 53707 
) 
Wyoming 
Community-Based In-Home Services Demonstration Contracts 
Commission on Aging 
Hathaway Building 
Cheyenne, WY, 82002 
Homemaker Program - Title XX 
Division of Public Assistance and 
Social Services 
Hathaway Bldg., Rm. #388 
Cheyenne, WY, 82002 
Washington, D.C. 
Home Care Services Program 
Department of Human Services 
19th and Massachusetts Ave., S.E. 
Bldg 16, D.0 General Hospital 
Washington, DC, 20003 
) 
In-Home Support Services 
Department of Human Services 
Randall Bldg, 1st and "I" St., S.W. 
Washington, DC, 20024 
Title III In-Home Services Program 
Office on Aging 
1424 K. St. N.W., 2nd Floor 
Washington, DC, 20005 ) 

) 



171 


APPENDIX D 
SURVEY INSTRUMENT (QUESTIONNAIRE) 



)1 


INUI<LIJ 
INSTITUTE 
ON DISABILITY 

1720 Oregon Street, Suite 4 • Berkeley, California 94703 • (415) 486-8314 

STATE 
TITLE OF PROGRAM 
CASE NUMBER 
DATE 
INTERVIEWER 
RESPONDENT 
TITLE 
AGENCY NAME 
ADDRESS 


TELEPHONE ( ) 

FOR INTERVIEWER COMMENTS: 

a public policy center dedicated to the elimination of handicappism through the promotion 
of independence, equity of opportunity and full participation of people with disabilities 

(-0.,4 .. 


-2


A. HISTORY 
Al. Is this a medicaid waiver program? 

Yes 1 

No 2 

D/K 8 

IF NO, SKIP TO A3 

A2. When did HCF A approve the waiver? 

SKIP TO A5 
SKIP TO HERE 

A3. What is the legislation which established this 
program? 

A4. When was the legislation passed? 

SKIP TO HERE 

A5. When was the program implemented? 
A6. What is the mission or purpose of the program? 


Yes No D/K 

1. Prevent institutionalization 1 2 8 
2. Contain costs associated with long-term 
care 1 2 8 
3. Allow people to work and still receive 
financial aid for attendant services • • • . 1 2 8 
4. Enable people to stay in their own home 
and community 1 2 8 
.5. Financial aid to employer or employable ... 1 2 8 

6. Other 
B. SERVICES 
Bl. Which of the following services are provided by the program? 
(Circle all that apply.) 

Yes No D/K 
PERSONAL CARE 

1. Respiration 1 2 8 
2. Bowel and Bladder Care 1 2 8 
3. Feeding 1 2 8 

-3


Yes No D/K 

4. Bathing 1 2 8 

5. Dressing 1 2 8 

6. Menstrual Care 1 2 8 

7. Ambulation 1 2 8 

8. Moving into and out of bed 1 2 8 

9. Oral Hygiene and grooming 1 2 8 

10. Skin Care 1 2 8 

11. Care and assistance with prosthesis 1 2 8 

12. Catheterization 1 2 8 

13. Injections 1 2 8 

14. Medication 1 2 8 

15. Range of Motion 1 2 8 

16. Other 

DOMESTIC SERVICES 
Yes No D/K 

1. Light Cleaning 1 2 8 

2. Heavy Cleaning 1 2 8 

3. Laundry 1 2 8 

4. Shopping 1 2 8 

5. Meal preparation 1 2 8 

6. Meal cleanup and menus 1 2 8 

7. Chore Services 1 2 8 

8. Repairs, Maintenance, Renovation 1 2 8 

9. Other 

RELATED SERVICES 
Yes No D/K 

1. Transportation 1 2 8 

2. Protective Supervision 1 2 8 

3.Escort 1 2 8 

4. Teaching and demonstration 1 2 8 

5. Respite Care 1 2 8 

6. Telephone Reassurance 1 2 8 

7. Readers 1 2 8 

8. Interpreters for Deaf 1 2 8 

9. Home Delivered Meals 1 2 8 

10. Case Management 1 2 8 

11. Other 


-41 


B2. Under this program what is the maximum limit on the: 

1. Number of visits allowed per week 
11 
2. Number of hours of care allowed per week 
3. Monthly financial allowance 
4. Total cannot exceed cost of being in 
nursing home 
(specify amount) 


5. Other 
6. Program has no maximum limits (circle) 
B3. During what hours is attendant service available? 

Yes No D/K 

1. 24 hours per day 1 2 8 
2. 9-5 only 1 2 8 
3. Other 
(specify) 
B4. During what days is attendant care service available? 

Yes No D/K 

1. Every day 1 2 8 
2. Weekdays only 1 2 8 
3. Other 
C. ELIGIBILITY CRITERIA 
Cl. Is eligibility for this program based on criteria 
which are: 

Yes No D/K 

1. Statewide 1 2 8 
2. Countywide 1 2 8 
3. Other 

-.5


C2. What age groups are eligible for the program? IF RESPONDENT 
CANNOT BREAK DOWN FIGURES IN THIS WAY, USE THEIR CATEGORIES 
AND RECORD ON DOTTED LINE.) 

Yes No D/K 

1. Less than 18 years old 1 2 8 
2. 18-64 years old 1 2 8 
3. 65 years old and over 1 2 8 
C3. Which of the following are criteria for eligibility in this program? 

(Circle all that apply.) 
Yes No D/K 
1. Employed 
2. Unemployed 
3. Vocational Rehabilitation clients 
4. SS .pients or eligibles 
5. SSDI recipients or eligibles 
6. Medicaid recipients or eligibles 
7. AFDC recipients 
1 
1 
1 
1 
1 
1 
1 
2 
2 
2 
2 
2 
2 
2 
8 
8 
8 
8 
8 
8 
8 

IF NOT EMPLOYED, 
SKIP TO QCS. 

IF EMPLOYED, 

C4. Is there a minimum number of hours per week a person must be employed 
to be program eligible and if so, what is it? 

1. Minimum Hours = 
2. No Minimum (circle) 
SKIP TO HERE 

C5. What is the maximum yearly income a person may have and still be eligible? 

N/A (circle) 

IF N/A, SKIP TO C7 

C6. What expenses, if any, can be excluded from a person's income when 
determining eligibility? 

Yes No D/K 

1. Taxes 1 2 8 
2. FICA 1 2 8 

-63. 
Anything Mandatory for employment (e.g. 
uniforms, union dues, pension, lunches, 
transportation) 
4. Impairment-related work expenses 
5. Day Care Costs 
6. Typical medical expenses 
7. Health insurance payments 
Yes 
1 
1 
1 
1 
1 
No 
2 
2 
2 
2 
2 
D/K 
8 
8 
8 
8 
8 
8. Other 
SKIP TO HERE 
C7. What are the maximum assets a person may have and still be eligible? 
N/A (circle) 
IF N/A, SKIP TO C9 
C8. What property can be excluded from a person's assets when determining eligibility? 
Yes No D/K 
1. Home 
2. Personal items in the home 
3. Car 
4. Burial Insurance 
5. Life Insurance 
1 
1 
1 
1 
1 
2 
2 
2 
2 
2 
8 
8 
8 
8 
8 
3 
6. Other 
C9. Is there a graduated shared cost formula? 
Yes 1 
No 2 
D/K 8 
) 
C10. Are any of the following criteria for eligibility in this program? 
(Circle all that apply) 
Yes No D/K 
) 
1. At risk of institutionalization 
2. Wheelchair user 
3. Able to manage own attendant 
4. Currently living in nursing home 
5. Living alone 
1 
1 
1 
1 
1 
2 
2 
2 
2 
2 
8 
8 
8 
8 
8 
) 


-7


Yes No D/K

0 

6. Family members unable or unwilling to do 
attendant care 1 2 8 
7. Physician's orders 1 2 8 
8. Resident in certain geographic area 1 2 8 
Specify 
9. Severely disabled according to Social 
Security Definition 1 2 8 
10. Member of specific disability group .... 1 2 8 
Specify group 
11. Inability to use certain number of limbs 1 2 8 
Specify # 
12. Other 
0 C11. Was every applicant who met the eligibility criteria served in FY 1984? 

Yes 1 

No 2 

D/K 8 

IF YES OR D/K, 

SKIP TO QC13 

C12. How many people were on the waiting list in FY 1984? 

SKIP TO HERE 

C13. How many people applied for services, but were considered ineligible in 
FY 1984? 

D. CARE PROVIDERS 
DI. Which of the following types of attendant care providers are there under 
this program? 

Yes No D/K 

1. Self-Employed Individuals 1 2 8 
(includes family members) 
2. Contract Agencies 1 2 8 
3. Local Government Unit Staff 1 2 8 
4. Other 
(specify) 
IF SELF-EMPLOYED, CONTINUE 
IF CONTRACT AGENCY, 
SKIP TO DIO 
IF LOCAL GOVERNMENT UNIT 
SKIP TO D 17 


D2. Are there specific regulations or guidelines relative to receiving attendant care 
from a self-employed individual? 

Yes 1 
No 2 
D/K 8 

IF NO OR D/K 
SKIP TO D5 

IF YES, 

D3. What are they? 
1. Attendant must receive some type 
of training 
2. Attendant must be 18 years old or older ... 
3. Consumer has to be able to supervise 
attendant 
4. Consumer requests an individual provider... 
Yes 
1 
1 
1 
1 
No 
2 
2 
2 
2 
D/K 
8 
8 
8 
8 
.5. Other 

D4. Under what circumstances, if any, can a relative be paid for 
attendant care services? 

Yes No D/K 

1. Does not reside in same house if related 
by blood (includes spouse) 1 2 8 
2. Is not the family member/spouse legally 
responsible for the disabled person 1 2 8 
3. Is prevented from working outside the home 
because no other attendant available 1 2 8 
4. Is prevented from working outside the home 
because no one else capable of caring for 
disabled individual 1 2 8 
5. Other 
SKIP TO HERE 

D5. What is the hourly wage for self-employed individual providers? 


-9


D6. What benefits do self-employed individual providers receive? 

Yes No Varies D/K 
1. Vacation Pay 
2. Sick leave 
3. Health Insurance 
4. Worker's Compensation 
5. Social Security 
6. Unemployment Compensation 
7. Transportation Costs 
1 
1 
1 
1 
1 
1 
1 
2 
2 
2 
2 
2 
2 
2 
3 
3 
3 
3 
3 
3 
3 
8 
8 
8 
8 
8 
8 
8 
D7. What skill level is required for the people 
services? 
who provide dYes 
irect attendant 
No D/K 
1. Trained by client/consumer 
2. LPN 
3. Home Health Aide 
4. Graduate of agency training program 
5. Other 
(specify) 
1 
1 
1 
1 
2 
2 
2 
2 
8 
8 
8 
8 
D8. Who hires and fires the attendant? 
1. Consumer 
2. Government Agency 
3. Contractor 
Yes 
1 
1 
1 
No D/K 
2 8 
2 8 
2 8 

D9. Who pays the attendant? 
Yes No D/K 

1. Consumer 1 2 8 
2. Government Agency 1 2 8 
3. Contractor 1 2 8 
IF ONLY SELF-EMPLOYED ARE 

PROVIDERS, SKIP TO El 
IF CONTRACT AGENCIES ARE 
PROVIDERS, CONTINUE 


IF LOCAL GOVERNMENT UNITS 
ARE PROVIDERS, SKIP TO D17 

SKIP TO HERE FOR CONTRACT AGENCIES 

DIO. Which of the following types of contract agencies are there under this program? 

Yes No D/K 

1. Certified Home Health Agencies 1 2 8 
2. Private, non-profit 1 2 8 
3. Private for profit 1 2 8 
4. Local Government Units 1 2 8 

-10


5. Other 
D11. What is the average hourly reimbursement you pay to contract agencies? 

)1 

D12. What is the average hourly pay range of the people who provide direct attendant 
care? 

$ 

D13. What benefits do contract agency attendants receive? 

a

Yes No Varies D/K 

1. Vacation Pay 1 2 3 8 
2. Sick leave 1 2 3 8 
3. Health Insurance 1 2 3 8 
4. Worker's Compensation 1 2 3 8 
5. Social Security 1 2 3 8 
6. Unemployment Compensation 1 2 3 8 
7. Transportation Costs 1 2 3 8 
D14. What skill level is required for contract agency attendants? 

Yes No D/K 

1. Trained by client/consumer 1 2 8 
2. LPN 1 2 8 
3. Home Health Aide 1 2 8 
4. Graduate of agency training program 1 2 8 
5. Other 
(specify) 
D15. Who hires and fires the attendant? 
Yes No D/K 


1. Consumer 1 2 8 
2. Government Agency 1 2 8 
3. Contractor 1 2 8 

D16. Who pays the attendant? 
Yes No D/K 

1. Consumer 1 2 8 
2. Government Agency 1 2 8 
3. Contractor 1 2 8 
IF LOCAL GOVERNMENT UNITS 
NOT PROVIDERS, 
SKIP TO El 

SKIP TO HERE FOR LOCAL GOVERNMENT EMPLOYEES 

D17. What is the hourly wage for attendants who are government employees? 

D18. What benefits do goverment employed attendants receive? 

Yes No Varies D/K 

1. Vacation Pay . 1 2 3 8 
2. Sick leave 1 2 3 8 
3. Health Insurance 1 2 3 8 
4. Worker's Compensation 1 2 3 8 
5. S 'al Security 1 2 3 8 
6. Unemployment Compensation 1 2 3 8 
7. Transportation Costs 1 2 3 8 
D19. What skill level is required for goverment employees who provide direct attendant 
services? 
Yes No D/K 

1. Trained by client/consumer 1 2 8 
2. LPN 1 2 8 
3. Home Health Aide 1 2 8 
4. Graduate of agency training program . .. . 1 2 8 
5. Other 
(specify) 
D20. Who hires and fires the attendant? 

Yes No D/K 

1. Consumer 1 2 8 
2. Government Agency 1 2 8 
3. Contractor 1 2 8 
n21. Who pays the attendant? 

Yes No D/K 

1. Consumer 1 2 8 
2. Government Agency 1 2 8 
3. Contractor 1 2 8 

-12


E. ADMINISTRATION 


El. Which of the following are the basis for determining the hours and types of servicesAO 
to be provided to each recipient? 
Yes No D/K 

1. Physician's recommendation 1 2 8 
2. Functional ability (ADLs) 1 2 8 
B'

3. Accessibility of environment 1 2 8 
4. Plan of care less costly than 
institutionalization 1 2 8 
5. ICF eligible 1 2 8 
6. S rvices Needed 1 2 8 
01

7. Other 
E2. Who makes the final decision on hours and types of services provided? 

Yes No D/K 

1. Case Management Agency Assessment 
Team 1 2 8 
2. Program Director 1 2 8 
3. Independent Living Program 1 2 8 
4. Vocational Rehabilitation Couselor 1 2 8 
5. Other 
Ji 

E3. Is medical supervision (nurse, physican or other licensed practitioner) required for 
any of the services? 

Yes No D/K 

 

 

1. For all services1 2 8
.11

 

2. Some services1 2 8 
(specify) 

3. None 1 2 8 


IF NONE, SKIP TO F I ,11 

E4. How often is this supervision required? 

Yes No D/K 

1. Once a month or more 1 2 8 


2. Once every 2 months 1 2 81 
3. Each quarter 1 2 8 
4. Once every 6 months 1 2 8 
5. Once a year 1 2 8 
.11 


13


SKIP TO HERE 

F. CLIENTELE 
Fl. For FY 1984 or the latest year figures available FY (specify), 
what is the unduplicated count of recipients of the following: (REFER TO BI 
FOR DEFINITIONS) 

1. Personal Care Services 
2. Domestic Services 
3. Related Services 
4. All Attendant Care Services 
5. Total Program (includes attendant care plus 
N/A 

F2. Approximately what percentage of the program's clientele in FY 1984 
or FY (specify) was: IF RESPONDENT CAN'T BREAK DOWN 
FIGURES INTO THESE AGE CATEGORIES, USE THEIR CATEGORIES AND 
RECORD ON DOTTED LINE 

1. Under 18 years of age 
2. 18-64 years old 
3. 65-74 years old 
4. 75 and older % N/A 
F3. What percentage of the program's clientele in FY 1984 or FY 
was: (specify) 

1. male 
2. female % N/A 
F4. What percent age of the program's clientele for FY 1984 or FY was: 
(specify) 

1. Black 
2. Hispanic 
3. Native American 
4. Asian 
5. White % N/A 

-14


F5. What was the average income of the program's clients in FY 1984 or 
FY (specify)? 

ll 

 N/A 

F6. What was the percentage of clients receiving income from the following in FY 1984 
or FY 
(specify) 

1. Social Security Surviror's Benefits 
2. Social Security Retirement Benefits 
3. SSI 
4. SSDI • • 
5. Veteran's Benefits 
6. Private Retirement 
7. Earned income 
8. Family 
9. AFDC 
10. Other % N/A 
(specify) 
F7. What was the average number of hours of attendant care per week that people 
received? 
N/A 

F8. How many people in FY 1984 did not enter institutions or left institutions or nursing 
homes as a result of this program? 
N/A 

F9. What is your estimate of the number of people per year who could leave institutions 
or nursing homes in your state, if attendant care programs were expanded? 

N/A 

G. EXPENDITURES 
Gl. For FY 1984 or the latest year figures are available (FY ) (specify), what was 
the total dollar amount or percent spent for: (REFER TO BI FOR DEFINITIONS) 

1. Personal Care Services: 
2. Domestic Services: 

3. Related Services: %
$ 

4. All attendant care services: %
$ 

5. The total program (includes 
attendant care plus $ % 
) 

G2. For FY 1984 or FY (specify) which of the following are the sources of 
funds for the program and the dollar amounts that come from each source? 

A. FEDERAL SHARE ONLY (Does not include match) 
1. Vocational Rehabilitation 
a) Title VII A $ % 
b) Title VII B $ % 
2. Title XVIII (Medicare) $ % 
3. Title XIX (Medicaid) $ % 
4. Title XIX Waiver $ % 
5. Title XX (Social Services Block Grant) . • $ % 
6. Title III $ % 
7. Other Federal: (specify) 

B. NON-FEDERAL (Including NON-FEDERAL match) 
1. State Funds $ 
2. County Funds $ 
3. Municipal Funds $ 
4. Private Funds $ 
5. Client Contributions $ 
6. Other Non-Federal: (specify) 
C. TOTAL FEDERAL AND NON-FEDERAL 
(SHOULD BE SAME AS QG 1 (4) ABOVE) % 

I 
-16-- 
G3. For FY 1984 or the latest year figures are avaiable FY (specify), 
what are the number of hours of service delivery for: (REFER TO BI, for 
definitions) (IF AGENCY USES DIFFERENT UNIT MEASURE CONVERT TO HOURS 
AS ACCURATELY AS POSSIBLE) 
1. All attendant care services: hrs. 
2. Total program (including 
hrs. 
G4. Have any studies been done on the cost effectiveness of this program? 
Yes 1 
No 2 
D/K 8 
G. Could you send us a copy? 
Yes 1 
No 2 
D/K 8 
(IF NO or D/K, 
SKIP TO G6) 
(IF YES, GIVE 
WID'S ADDRESS) 
SKIP TO HERE 
G6. Have any studies been done in your state on the extent of need for attendant care 
services? 
Yes 1 
No 2 
li 
D/K 8 
(IF NO OR D/K, 
SKIP TO HI) 
G7. Could you send us a copy? 
Yes 1 
No 2 
D/K 8 (IF YET, GIVE WID 
ADDRESS)

-17


SKIP TO HERE 

H. EVALUATION 
HI. What are the program's strong points? 
H2. What are the program's weak points? 

H3. What changes in the program are being contemplated? 

(IF AGENCY ADMINISTERS 
ANOTHER PROGRAM, PROCEED 
TO NEW FORM, OTHERWISE) 

H4. Do you know of any other attendant programs in your state, in particular waiver 
programs? 

Thank you very much for answering our questions. 

WORLD INSTITUTE ON DISABILITY 
1720 OREGON STREET 
BERKELEY, CALIFORNIA 94703 
(415) 486-8314 
ATTN: DR. SIMI LITVAK 



Cla. What are the disabilities of the people who are eligible to receive 
services from this program? 
Yes No D/K 

111111 


2 


2 


2 


2 


2 


2 


888888 


1. Physical Disability 


)


2. Brain Injury 


3. Mental Illness 


4. Mental Retardation 


5. MR, CP, Autism, Epilepsy 


6. 
DD (broadest definition) 


 


7. Other 
Fla. What are the disabilities of the people who receive services from 
this program? 
)


Yes No D/K 


1. Physical Disability 
2. Brain Injury 
111111 


2 


2 


888 
888 


2


3. Mental Illness 
2


4. Mental Retardation 
)


2


5. MR, CP, Autism, Epilepsy 
2


6. DD (broadest definition) 
7. Other 

THE WORLD INSTITUTE ON DISABILITY (147D) is a pri


vate, non-profit 501(c)(3) corporation focusing on major 

policy issues from the perspective of the disabled commu


nity. It was founded in 1983 by persons who have been 

deeply committed to the Independent Living Movement. 

Its mission is to promote the health, independence, well


being and productivity of all persons with disabilities. It is 

funded by foundation grants, technical assistance con


tracts and individual donations. 

WID is a research and information center focusing on five 
policy and program areas which have significant impact 
on people with disabilities: 

*Attendant Services: WID is studying the availability of 
attendant services around the country and has proposed 
policy recommendations in this area. It operates a 
national resource center providing information and 

technical assistance. 

*International Development of Independent Living: It has 
been said that Independent Living is "the hottest new 
American export today." WID is actively involved in 
promoting international relations among disabled communities 
and has hosted visitors from twenty-five 

countries. 

*Public Education: WID believes that the general public, 
disabled people and professionals in the fields of health 
care, aging, education, housing, job development and 
transportation need accurate information on disability 
and independent living. WID is also engaged in consultation 
and education with synagogues and churches on 
issues of architectural and attitudinal accessibility for 
elderly and disabled persons who wish to participate fully 
in the life of their religious communities. 

*Aging and Disability: WID has identified the interface 

between aging and disability as one of its priorit y areas. 

It is engaged in ongoing work to build linkages between 

the disabled and elderl y communities. In 1985, WID co


sponsored a major national conference titled, "Toward 

a Unified Agenda: Disability and Aging." 

*Immunization and Injury Prevention: The polio virus has 
once again become a threat to people throughout the 
world. WID is determined to help eliminate the spread of 
polio by working with the United Nations and other organizations 
to make universal immunization a reality. In 
addition, WID is committed to the prevention of all disabling 
injuries, diseases and conditions. 

Other attendant service publications which can be or


dered from the World Institute on Disability, 1720 Oregon 

Street #4, Berkeley, California 94703: 

*Descriptive Analysis of the In-Home Supportive Services 
Program in California ($10). Describes one of the most innovative 
programs in the country. Examines the history of 
the 25-year-old program, how it operates, who it serves, 
and its problems. 

*Swedish Attendant Care Programs for the Disabled and 
Elderly: Descriptions, Analysis and Research Issues from a Consumer 
Perspective by Adolf Ratzka, Ph.D., published by the 
World Rehabilitation Fund, 1985 ($3). A consumer-based 
analysis of the attendant services system in Sweden by an 
economist who is a user of personal assistants. 

'Report on National Attendant Care Symposium" 1985 
(S3). Proceedings from a national meeting sponsored by 
the National Council of the Handicapped. Includes recommendations 
for a national policy for attendant services 
along with recommended changes in existing legislation. 

'Attendant Services, Paramedical Services, and Liability 

Issues" (Free). Explores the issue of liability of providers 

of different skill levels performing personal service tasks. 

Gives consumer-based perspective along with data on 

how various states deal with the issue. 

'Summary of Federal Funding Sources for Attendant 

Care" by Hale Zukas (Free). Overview of the provisions 

for attendant services under Medicare, Medicaid, Social 

Service Block Grant, The Rehabilitation Act, and Title III 

of the Older American's Act 

*"The Case for a National Attendant Care Program" by 

Hale Zukas (Free). An analysis of the federal funds 

presently utilized to finance attendant services, their in


adequacy to fulfill the need, and the need for a national 

entitlement program. 

"Attendant Service Programs that Encourage Employment 
of Disabled People" (Free). Brief state b y state 
description of programs encouraging employment, giving 
information on eligibilit y criteria, administrating agency, 
funding source, utilization and expenditures. 

*"Ratings of Programs by Degree of Consumer Control" 
(Free). Ratings of each program's degree of consumer control 
based on the National Council on the Handicapped's 
ten-point criteria. 

Produced by Public Media Center 


) 


)