POLICY ISSUES AFFECTING THE MEDICAID PERSONAL CARE SERVICES OPTIONAL BENEFIT Simi Litvak, Ph.D., Research Director Jae Kennedy, M.A., Research Associate December, 1991 WORLD INSTITUTE-DISABILITY 510 SIXTEENTH ST SUITE 100 OAKLAND CA 94612-1500 USA VOICE OR TDD 510 763 4100 FAX 510 763 4109 MOVING TOWARD EQUALITY Acknowledgements This project was funded by the office of the Assistant Secretary of Planning and Evaluation (ASPE) US Department of Health and Human Services (HHS), contract #HHS-10089- 0025. Quantitative analyses were based on national surveys funded the Charles Stuart Mott Foundation and by the National Institute of Disability and Rehabilitation Research (NIDRR), grant #G008720134. The publication and distribution of this document is made possible through the Research and Training Center on Public Policy and Independent Living (NIDRR grant #H133B00006-91), a joint project with the World Institute on Disability, InfoUse, and The Western Consortium of Public Health, University of California. The authors would like to acknowledge the contributions of the HHS project officer, Pam Doty, the advice of Deborah Lewis-Idema, Marylin Falik, Marshall Kapp, Charles Sabatino, and Linda Toms-Barker, and the support of the entire staff at the World Institute on Disability. We would like to express our special thanks to the people who to time out their busy schedules to help us plan and conduct the site visits, who agreed to be interviewed, and who reviewed these program descriptions. Without these generous contributions of time and expertise, this research project would not have been possible. The content of these reports do not represent the policies of the funding agencies, and endorsement by the federal government should not be assumed. TABLE OF CONTENTS EXECUTIVE SUMMARY 1 INTRODUCTION 7 Purpose 7 Source of Information 8 POPULATION SERVED 9 Income Criteria 10 Age Groups Eligible and Served 11 Degree of Disability 13 Type of Disability 14 Other Eligibility Criteria 14 Size of the Program Relative to Potential Users 15 SERVICES PROVIDED 17 Personal Care Services 17 Household Maintenance Services 18 Communication Services 18 Transportation Services 19 Short-term Services 19 AVAILABILITY AND INTENSITY OF SERVICE DELIVERY 19 Hours and Days Available 19 Service Limits 20 Availability of services 24 hours/day 21 Relationship between provider type and hours of service 21 PROGRAM GOALS 22 Description of Goals 22 Degree to Which Goals are Met 23 ACCESS CONTROL MECHANISMS 25 Eligibility Limits to Access 26 Program Features Limiting Access 26 External Factors Limiting Access 27 Population Target Priorities 28 DELIVERY MODE 28 Benefits and Wages 29 Relationship between provider type, payment mechanism and payment rate 29 LIABILITY 31 Who is the Employer 31 Nurse Practice Acts 33 QUALITY ASSURANCE MECHANISMS 34 State Level Oversight 34 Case Level Oversight 35 Attendant Screening and Training 35 Recipient Complaint Mechanisms 37 PROGRAM DESIGN DISCRETION 38 Household and Chore Tasks 38 Service Location 40 Exclusion of Service to those in institutions of more than four individuals 41 Family Providers 42 Physician Oversight 43 Nurse Supervision 44 ROLE OF PERSONAL CARE OPTION WITHIN THE STATE 45 Site Visit States 45 Who Is Underserved or Unserved 47 TRENDS IN STATE UTILIZATION 49 Growth rate of Participation 49 Growth Rate of Expenditures, Recipients and Other Indicators 51 Change in Service Availability and Service Limits 53 Comparison of Growth Rate Across Funding Sources 54 Shifting of Resources Among Different Funding Sources 55 DISCUSSION 57 REFERENCES 68 APPENDIX A: Summary of Each Personal Care Program Based on 1984 and 1988 Questionnaires APPENDIX B: The Effect of Government Funding Source on Personal Assistance Programs: A Summary of 1985 National Survey Data APPENDIX C: Chartbook of Tables from 1988 National Survey Data APPENDIX D: Chartbook of Program Comparisons by Funding Source on 1984 and 1988 National Survey Data LIST OF TABLES Table 1 Income Levels for Aged and Disabled Medicaid Recipients Living in the Community 12 Table 2 Percentage of People Served by Age Group in Site Visit PC-Option Programs 13 Table 3 Degree of Disability of Program Recipients 14 Table 4 Personal Care Option Recipients Per Aged and Disabled Medicaid Recipient By State 16 Table 5 Medically Related Tasks 18 Table 6 Percentage of PC-Option Programs with Various Levels of Service 20 Table 7 Percentage of PC-Option Programs with Various Service Maximums Expressed in Dollars Per Month 20 Table 8 Average Number of Hours Per Week Per Recipient By Provider Type 1984 and 1988 All Funding Sources 21 Table 9 Goals of the PC-Option Programs 23 Table 10 How Need For Service Is Defined and Assessed 26 Table 11 Percentage of PC-Option Programs Using Different Provider Types by Year 28 Table 12 Provider Benefits and Wages 29 Table 13 Type of Provider, Payment Mechanisms and Basis of Pay 30 Table 14 Who is the Employer? 31 Table 15 Case Level Oversight 35 Table 16 Who is Responsible for Attendant Screening? 36 Table 17 Nature, Extent and Source of Attendant Training 36 Table 18 Recipient Complaint/Grievance Mechanisms 37 Table 19 Proportion of Household/Chore to Personal Care Tasks 39 Table 20 Site of Service Provision: Transportation, Driving, Escort 40 Table 21 Service to Institutionalized Recipients 41 Table 22 Family Members Who Cannot Be Paid for Providing PAS 42 Table 23 Frequency of Physician Review/Reauthorization 43 Table 24 Frequency and Character of R.N. Oversight 44 Table 25 Who Is Underserved or Unserved in Each State PAS System 48 Table 26 Growth Rate of Participation in the Personal Care Optional Benefit by State 50 Table 27 Aggregate and Average per PC-Option Program Growth Rate of Expenditures and Recipients Between 1984 and 1988 Recipients Expenditures 51 Table 28 Growth Rate of Expenditures and Recipients of PC-Option Programs By State in 1984 and 1988 52 Table 29 Total and Average Per Program Growth in Hours 53 Table 30 Growth Rate of Various Program Indicators by Funding Source Between 1984 and 1988 54 EXECUTIVE SUMMARY The Purpose of this Study This study analyzes how states are using the Medicaid Personal Care Services Optional (PC-Option) benefit. Under the PC-Option, states may choose to include personal care services in their state Medicaid plans, but are not required to do so. The only federal requirements for the PC-Option are that personal care services be: 1) provided in the home, 2) authorized by a physician in accordance with the recipient's treatment plan, 3) supervised by a registered nurse, and 4) provided by a qualified individual who is not a member of the recipient's family. The first requirement has been modified by federal legislation passed in 1990 which allows states to offer services outside the home by 1994. There is great variability among states on interpretation of the other requirements. The states determine how physician authorization is obtained and what constitutes a treatment plan. States also determine the nature and scheduling of R.N. supervision, set qualifications for providers, and determine what types of family members are excluded from becoming paid service providers. In order to formulate long-term services policy, the Department of Health and Human Services contracted with the World Institute on Disability (WID) for this study to provide accurate "baseline" information to inform future policy decisions regarding the PC-Option. The data in this report (unless otherwise noted) is based on two national surveys of personal assistance service (PAS) programs conducted in 1985 and 1990 by WID, as well as site visits to six states which utilize the PC-Option. Research Findings The PC-Option programs fill different niches in the community-based personal assistance services (PAS) systems in every state. The programs range from those which are small and insignificant parts of the state's long-term services system to those in which the major or only source of PAS in the state is the PC-Option program. Even in states with a multiplicity of programs there are people who are unserved or under served: no state serves everyone who needs PAS. The target population for Medicaid PC Option programs is defined in each state by income, age, disability and other miscellaneous eligibility requirements. These populations may include children, working age adults and older people with physical, cognitive, and psychiatric disabilities. It seems that historical circumstances and the political clout of certain population groups have often determined which groups are served in a given state. The perceived needs of the target populations often influence the structure of the programs in terms of service mix, hours available, degree of oversight, etc. Determining who is actually being served by these programs is often difficult, due to the inconsistency of the management information systems (MIS) that are designed to collect demographic data. As states attempt to serve diverse and growing populations needing PAS, they may opt to expand existing programs or develop new ones. Most programs offer a basic core of ADL (Activities of Daily Living) and IADL (Instrumental Activities of Daily Living) services but chore, repair and maintenance services are rarely offered. Transportation and escort services, if offered at all, are usually limited to medical appointments. Almost half the PC-Option programs limit services to less than 40 hours per week, regardless of level of disability. The provision of paramedical services, particularly "invasive procedures" (e.g. assistance with medications, injections, catheters or ventilators) is particularly problematic for PC-Option programs. Such services are usually not readily available to consumers who need them, due in part to legal restrictions set by state Nurse Practice Acts which usually prohibit non-licensed individuals other than family members from doing invasive procedures. State administrators often cite these laws, and concern over liability for negligence, as reasons for not providing paramedical services through their programs. Due to the lack of adequate paramedical, chore, transportation and escort services, the PC-Option programs in most states do not enable significantly disabled individuals to be full participants in their communities unless they have sufficient informal or voluntary assistance to fill in service gaps. This situation doesn't appear to be improving: between 1984 and 1988 there was a slight decrease in the number of programs providing paramedical services, as well as a decrease in the number of programs offering services at any time during the day or week. There are several different ways in which personal assistance providers are employed. Independent or individual providers experience different conditions of employment depending upon the program and state. They may be considered self-employed or employed by the disabled recipient. Agency providers work for non-profit or for-profit agencies, and are generally considered the employees of the agency which hires them. Government agency providers fall into two different categories: civil service employees with the same wage scale and benefit packages as other government employees of similar skill and rank, and contract workers, employed by state and county governments on a primarily part-time basis with rates of pay, working conditions and benefits similar to those of independent providers. On the average, agency providers and government workers receive the best wages, and government civil service workers receive the most benefits. Independent providers are the most poorly compensated providers. There is a strong relationship between the number of hours an individual is able to receive from a program and the type of provider utilized: generally programs that use independent providers provide more hours of service. State administrators say that managerial concerns, such as liability, workers compensation, and tax withholding have shaped the structure of their programs in terms of provider type. Many states addressed these concerns by utilizing homecare agency providers, thereby shifting liability from the state to private agencies. Other states which utilize independent providers have developed different ways of dealing with withholding. Because there are advantages to using either type of provider, these issues become very complex. Both agency and individual providers have a role to play in a comprehensive system of PAS. There are a number of ways in which states and the federal government have tried to influence the quality of the PC-Option programs. These include: state-level oversight of overall program compliance standards, case level oversight, nurse supervision of attendants, attendant training and screening, and recipient complaint and grievance mechanisms. All states have some of these quality assurance mechanisms in place. Which mechanisms a state employs depends upon its philosophy or view of quality assurance. Some states emphasize quality assurance from "below", i.e. training the recipient to recognize quality and providing avenues for problems to be addressed, while others relied on quality assurance systems from "above", i.e. paper reviews and site visits. Still others limit their efforts to minimum compliance with regulatory requirements. In 1988, the Health Care Finance Administration (HCFA) proposed new regulations for the program in an attempt to more concretely define "personal care", service location, "home", provider, and the nature of physician and nurse involvement. HCFA collected comments on the proposed regulations, but has not promulgated new regulations. The degree to which the states meet the proposed HCFA criteria varies. Some would have to radically change their program to meet the proposed regulations. The PC-Option programs on the average experienced a high rate of growth. Seven states have added the PC-Option to their Medicaid plans since WID's first survey in 1984. Between 1984 and 1988, the number of recipients grew 65% and expenditures grew 144%. Average expenditures are growing at a faster rate than caseloads, possibly due to program changes such as provider wage increases, increases in administrative costs, more intensive case management, and an increase in more significantly disabled recipients requiring more hours of service. Though some programs tightened their per recipient service allowances and limited the times in which services were available, these restrictions usually failed to limit the overall growth in program expenditures. The Changing Role of the PC-Option in Home and Community-based Service Systems The Medicaid PC-Option has been a major source of public funding for home and community-based long-term services, and is currently experiencing significant growth at both a national and state level. In an era of shrinking state revenues, many states view the PC- Option as one of the few vehicles left for leveraging federal dollars to expand PAS. Medicaid Waivers, despite their proliferation, have failed to bring PAS to most of the people who need it, as the waivers tend to be relatively small and targeted to special populations (i.e. federal figures indicate that two-thirds of waiver spending goes toward services for people with developmental disabilities). In many states the number of people served through purely state or Social Service Block Grant funded programs have declined because of new fiscal restraints. The Personal Care Option has therefore become the mainstay of many states' home and community-based services systems. The same fiscal climate which has contributed to greater utilization of the Personal Care Option has created pressure to contain PAS program costs. Despite the federal match, Medicaid services are increasingly viewed as "budget busters" because of their entitlement status, and are coming under legislative and executive scrutiny. States vary dramatically in the degree to which they limit access to services, but all programs are caught between the growing demand for services and the need to contain costs. The growth in caseloads and expenditures can also be attributed to expanding and diverse populations seeking services, i.e. children and adults (under and over age 65) with a variety of physical, cognitive, and psychiatric disabilities. One of the major questions raised by this study is whether -- or to what extent and by what means -- it is possible to accommodate the sometimes disparate needs of different populations in a single program. Traditionally, "long-term care", whether provided in nursing homes or in home and community-based settings, has been primarily associated with the needs of persons over 65 who develop age-related functional disabilities as the result of chronic medical conditions, including Alzheimer's disease and other dementias. The Medicaid personal care option was originally modeled on an Oklahoma program that sought to augment the in-home services available to the disabled elderly by paying small stipends to individuals -- primarily friends and neighbors -- recruited by the care recipient or his or her family to supplement informal supports. Although the Oklahoma prototype and most subsequent PC-Option programs serve older people with disabilities, many programs have evolved which serve a sizable number of younger people. Most programs limit service to people with physical disabilities, although this is changing as more people move from institutions into the community. The growth in the number and types of people seeking home and community-based long-term services has been accompanied by growing political and economic scrutiny of existing service delivery systems. Disability rights advocates are increasingly demanding a service delivery system which facilitates independence and empowerment by maximizing consumer involvement in all aspects of PAS. They argue that consumers are the best qualified to assess how much service they need, what kinds of services they need, and when, where, and how these services should be delivered. They therefore prefer "independent providers" who are hired, supervised, and paid directly or indirectly by the consumer or his/her chosen surrogate. Until recently, advocates for seniors focused on expanding professional accountability and government regulations for Medicaid and Medicare services to ensure "quality" (which is largely defined as the lack of negative outcomes such as abuse and neglect), but recent research and advocacy efforts indicate that older people with disabilities are also concerned with autonomy issues. The type of system promoted by disability rights advocates is seen as a challenge to the traditional "medical model" of service delivery. That model defines personal assistance as a medical or medically-related need and puts certain types of medical and social service professionals (physician, nurses, and/or medical social workers) in charge of allocating and monitoring a limited range of services, usually provided via private or non-profit homecare or home heath agencies. Advocates for seniors have also voiced criticisms of the medical model, although on somewhat different grounds. Typically, they are concerned with the fragmentation of the financing and delivery system that results when coverage of "nonmedical" services is prohibited under medical insurance programs such as Medicare or Medicaid. Will the states be able to use the PC-Option to meet the needs of the diverse and increasingly vocal population demanding services, while trying to address their own managerial concerns? Does it make more sense to administer a multitude of programs with different administrations, eligibility requirements, and types of service delivery to serve the needs of different groups, or can a single program be developed which is flexible enough to respond to the needs and preferences of a heterogenous consumer population? The following problems and in the organization of PC-Option programs will need to be addressed in order to better serve all people who need personal assistance services. Problems with the Existing Programs The following problems are impeding states in their ability to serve the heterogeneous and expanding population which needs PAS. -The number of hours of service available may not meet the needs of the significantly disabled population. -The scope of services available may not meet the needs of the populations served. Particularly problematic for many consumers are the lack of supervision services, emergency services, and paramedical services. -Limits on the times services and locations in which services are provided often impede participation in the family, community, and workplace. -Income eligibility requirements limit service access, and discourage marriage and employment for consumers. -Family providers are not included in the repertoire of possible provider arrangements, despite the potential cost savings and desires of some consumers. -Utilization of independent providers is limited, despite the lower per unit cost and greater consumer control, because of liability concerns and withholding issues. -Consumers do not have a choice among provider modes. -Assessment of service quality is based on broad administrative standards instead of consumer experience. Increasing Access to Services Across the U.S. there is extraordinary variability in the number of people receiving necessary services. Some states make a concerted effort to provide personal assistance services to many of those who need it, while others provide very little. Some sort of federal action would probably be required in order to address these disparities. This report ends with a discussion of proposals for federal action. These include making personal care a mandatory Medicaid service, shifting a percentage of the current Medicaid expenditures from institutional services to home and community-based services, expanding the 1915(D) home and community-based waiver, and consolidating all Federal PAS programs into a block grant program which is indexed and does not require state matching funds. All of these proposals have drawbacks, but some sort of resolution of the access issue is imperative. As political, economic, and demographic pressures build, federal and state government will need to initiate a formal process of dialogue between administrators, legislators, providers, advocates and consumers. PAS is essential to a growing number of Americans, and a way must be found to provide these services. INTRODUCTION Purpose The purpose of this study was to learn how states are using the Medicaid personal care services optional (PC-Option) benefit.' Under the personal care benefit, states may provide personal assistance services to Medicaid-eligible recipients. The optional status of the benefit means that states may choose to include "personal care" services in their state Medicaid plans, but are not required to do so. If they elect to cover personal care, states are largely free to define these services as they see fit. The only federal restrictions specific to this benefit reiterate the statutory requirements that personal care "in the home" must be authorized by a physician in accordance with the recipient's treatment plan, supervised by a registered nurse, and provided by a qualified individual who is not a member of the recipient's family. States determine how physician authorization will be obtained and what constitutes a treatment plan. States also determine the nature and scheduling of R.N. supervision, set qualifications for providers and determine the degree of kinship which excludes a family member from becoming a paid care provider. Recently the in-home nature of the service was changed in the Omnibus Reconciliation Act of 1990. As a result by 1994 Medicaid Personal Care Optional Services will be available to people outside the home. Although the personal care option has existed in Medicaid since the early days of the program, relatively few states elected to provide this coverage until the 1980s. As of FY 1979, only ten states provided personal care, spending a total of $196 million. In FY 1982, seventeen states offered the benefit and expenditures had increased to $395 million. By FY 1988, twenty-three states (including D.C.) reported offering such coverage. According to WID data, federal and state Medicaid expenditures for personal care services totaled about $1.6 billion in FY 1988. This is a 25% increase over 1987 expenditures.2 The Medicaid personal care services benefit has never been formally evaluated.3 Because there are so few regulations, there has, historically, been little federal oversight. Until recently, data on expenditures for personal care services were not routinely available because they were not reported separately from home health care expenditures. 1 This study was conducted as a result of a contract from the U.S. Department of Health and Human Services by the World Institute on Disability (WID) and supported with data from WID's National Institute on Disability and Rehabilitation Research (NIDRR) Grant #0008720314, an earlier Mott Foundation grant, and on-going research on PAS under the auspices of the Research and Training Center on Public Policy in Independent Living. 2 According to Health Care Financing Administration claims data, federal and state Medicaid expenditures for personal care services totaled about $1.2 billion in FY 1987. 3 Palley and Oktay (1989) completed their seminal research on the PC-Option when this study began. Three other studies commissioned by the Commonwealth Fund informed much of the work in this project. Lewis-Idema et.al . (1990) did a phone survey of all the PC-Option programs. Charles Sabatino (1990) did site visits to programs using independent providers. Marshal Kapp (1990) looked at liability issues in relation to independent provider models of service delivery. One other study, done by Diane Justice et.al (1988) for the National Governor's Association, was also very useful. In order to inform the long-term care policy debate, the Department of Health and Human Services (HHS) contracted with the World Institute on Disability for this study to provide accurate "baseline" information on services already being funded by public programs, particularly the Medicaid Personal Care Optional programs. Information about the use of the Medicaid personal care benefit was seen by the Assistant Secretary for Planning and Evaluation (ASPE) at HHS to be particularly relevant for two current policy purposes: * To provide information relevant to regulatory decision-making; in particular, whether or not the coverage regulations for personal care services should be revised and, if so, in what ways. * To inform the ongoing policy debate about expansion of public funding for long- term care services, particularly home and community-based care. Source of Information Statistical Analyses This report is based primarily on two national surveys of PAS programs conducted in 1985 and in 1990 by the World Institute on Disability, as well as a series of six site visits conducted by WID between October, 1990, and February, 1991. (In the few places in the report where the WID information is supplemented by statistics from other sources, it is noted.) In 1985, WID interviewed administrators of 157 out of the 175 programs identified as providing PAS. Twenty of these programs provided PAS through the Personal Care Option of Medicaid. Included were programs that provided personal care and household assistance to people with disabilities on a continuing, respite or emergency basis. Not included were programs for people with only cognitive or mental disabilities. The data collected were demographic and descriptive information about the program based on program management information system output, written documents and administrator judgement. (See Appendix B for a full discussion of methodology and a copy of the questionnaire and/or Litvak, Heumann and Zukas, 1987.) In 1989, these same administrators were asked to complete a follow-up mail survey to determine the changes that had occurred since 1984. There was an 75% response rate for the programs interviewed in the first telephone survey. We also sent surveys to the 19 program administrators who refused to be interviewed in 1985, and four responded (21 %). Finally, we sent questionnaires to 58 programs which had been created since 1984, or which we did not know about in 1984. The response for these new programs was 48% (26 returned). The overall return rate for all PAS programs contacted was 68%. All 24 of the existing programs funded by PC-Option responded to the 1989 survey, due to intensive follow-up efforts made by the research team. Verification of which states actually utilized the PC-Option needed to be done because of discrepancies between the 1985 WID survey, the 1985 and 1987 lists prepared by the Health Care Finance Administration (HCFA, 1985, 1987), and the list of programs developed by Lewis-Idema et. al. (1990). After extensive communication with state administrators, it was found that four states had added the PC-Option to their Medicaid plan (WV,ME,NC,WA) since WID's 1985 survey, and seven states identified at some point by HCFA as using the PC-Option had in fact not included the PC-Option in their state Medicaid plans (IN,KS,CA,ID,TN,AL,HI). The information gathered from these two surveys were analyzed in several ways. Key variables from both surveys were examined in the aggregate. Other analyses contrasted programs with different sources of government funding. The programs were divided into six groups: 1) those which received funding from the Medicaid Personal Care Option, 2) those which received funding from Medicaid home and community-based waivers, 3) those which received Social Security Block Grant (Title XX) funding, 4) those which received funding from the Older Americans Act (Title III), 5) those which received only state general funds or state rehabilitation funds (Title VII), and 6) those which received other sources of federal funding (i.e., Medicaid Home Health and other federal funds). It should be noted that all programs relied heavily on state revenues to augment the federal funds received. 1985 and 1989 surveys were also compared in order to identify program changes among these funding source groups. Site Visits Site visits were conducted to six states which had Personal Care Option funded programs under Medicaid. The six states were chosen to represent different systems of service delivery, different provider arrangements, different sized programs, and different geographical areas. These sites were: Montana, Oregon, Michigan, Massachusetts, Maryland and Texas. The research team interviewed state administrators, state level advisory groups, state wide advocacy groups, county administrators, and local consumers and providers in the state capitol city and a city in another county near the capitol. The interviews were open- ended based upon a preset format to cover in depth various aspects of the programs history and development. (See Kennedy and Litvak, 1991, for a fuller discussion of the site visit methodology.) POPULATION SERVED The target population for the Medicaid Personal Care Option programs is defined in each state by income, age, disability and other miscellaneous eligibility criteria. How these official regulations combine with program design and external factors to influence who is actually being served is difficult to document because program management information system (MIS) do not collect uniform demographic data. Responses to the 1985 survey regarding demographic data were so poor that these questions were not included in the 1989 survey. Therefore the following discussion relies mostly on eligibility criteria augmented by demographic data whenever possible from the site visit states. In general, population targets, as expressed in eligibility criteria, are the result of both state economic concerns and the needs of disabled constituencies. For example, in Texas state administrators were responding to the need to control spending on nursing homes when they created the PC-Option program as an alternative for people in ICF-2 level homes. In contrast, in other states historical circumstances and political clout of certain population groups are a reason for differences in population targets. For example, families of people with mental retardation were active in the formation of the Michigan program, while people with severe physical disabilities and their advocates lobbied for and designed the program in Massachusetts. Each state is currently attempting to respond to new or changing constituencies. Income Criteria Most PC-Option recipients are aged or disabled individuals who access the program by meeting the eligibility criteria for the SSI (Supplemental Security Income) Program. Individuals cannot be eligible for SSI if they have an income higher than a certain level which is the same in every state, i.e. $368 a month for individuals and $553 a month for a couple in 1989. (There is also an asset limit of $2000 for individuals and $3000 for couples). This income eligibility level is also the payment standard for SSI. Many states supplement this payment standard for individuals living in the community. As a result of this and several other provisions of Medicaid's convoluted income eligibility criteria, the actual income of individuals receiving the PC-Option varied considerably from state to state, from 51 % of the federal poverty level to 111 % for individuals, and from 49% of the poverty level for couples to 122% for couples (Table 1).4 The strict income requirements and the disparity between single and couple income criteria in some cases discouraged program recipients from working and from marrying. The income eligibility requirements have led to a de facto exclusion of working people, and served as a work disincentive for current program recipients. The number of people taking advantage of section 1619 of the Social Security Act, which allows people to work and still Some of the PC-Option states allow people to meet a "Medically Needy' income standard that differs from the SSI income standard (Table 1). In most medically needy states the medically needy standard is somewhat higher than the SSI standard, but not in all of them. Medically-needy individuals must either meet the income and resource criteria for a state's medically needy program or ..."have sufficient medical expenses to reduce their countable income to medically-needy income levels" (State Medicaid Information Center, p. 5). In addition, there are several states, called 209(b) states (after the section of the legislation covering this option) which have more restrictive income, resource or disability requirements than SSI for Medicaid eligibility. The 209(b)states with more restrictive income standards than SSI must allow for a spend-down to this standard even if the state does not have a spend-down provision. Hence PC-Option recipients in North Carolina and Utah have incomes that are below 74% of poverty, the SSI income standard. receive Medicaid benefits, appears to vary greatly from state to state. Age Groups Eligible and Served Most PC-Option programs (79%) claim they serve people of all ages, while some (21%) said they only serve people over the age of 18. The site visits suggest, however, that despite broad age eligibility criteria, some programs may emphasize service to one age group over another (Table 2). For example, the program in Massachusetts was designed specifically to serve young people with disabilities through the states's independent living programs, because this group was not being adequately served by the existing state programs (which were geared toward elderly people). Oregon has recently shifted its PC-Option program to target children with disabilities. Table 1. Income Levels for Aged and Disabled Medicaid Recipients Living in the Community (Percent of Poverty)* State Individuals Couples Alaska 111% 122% +Arkansas 74% 83% +Maine 76% 85% +Maryland 74% 83% +Massachusetts 102% 115% +Michigan 81% 90% -+Minnesota 77% 85% -Missouri 74% 83% +Montana 74% 83% -+Nebraska 86% 96% Nevada 82% 95% -+New Hampshire 77% 83% +New Jersey 100% 100% +New York 90% 98% -+North Carolina 51% 49% -+Oklahoma 88% 104% +Oregon 74% 83% South Dakota 74% 83% Texas 74% 83% Utah 63% 65% +Washington 80% 86% +West Virginia 74% 83% +District of Columbia 100% 100% * These estimates are based on 1987 data. The poverty level for 1988 was $481/month for an individual and $644/month for a couple. + States which allow a spend down for medically needy "aged and disabled" (see footnote 4 for explanation). -"209(b)" states (see footnote 4). Source: Medicaid Eligibility for the Elderly in Need of Long-term Care. Edward Neuschler, Center for Policy Research, National Governor's Association, September 1987. Table 2. Percentage of People Served by Age Group in Site Visit PC-Option Programs Age Group State Year <18 18-65 >65 Massachusetts 1989 8% 85% 7% (<21) (21-65) Michigan 1981 33% 67% (>60) Maryland 1984 2% 33% 65% Oregon 1988 27.8% 72.2% (<60) (>60) Montana* 1989 35% 60% Texas 1990 6.5% 23% 70.5% * Estimate by Westmont, Montana's statewide private provider agency Degree of Disability Programs developed individual functional assessments by ADLs, and/or number of hours and type of services needed. Minimum levels of functional limitation are set, and in some states these levels have been raised in order to contain program expenditures. These functional capacity guidelines are an indicator of the minimum level of severity of disability people must have to be accepted in a program. The Massachusetts program requires that people have the severest level of disability to enter the program (Table 3). Texas, Maryland, Oregon and Montana have tried to exclude those who only need assistance with IADLS or household maintenance functions. Unfortunately none of the site visit programs could give us data on the degree of disability of their recipients. Table 3. Degree of Disability of Program Recipients State Degree of Disability Massachusetts Need 10 or more hours per week of ADLs or 14 or more hours of ADLs and IADLs Michigan Need for ADL, housekeeping or chore services Maryland Limitations in ability to perform ADLs Oregon Child in foster care or adult needing assistance with at least 1 ADL on a low or intermittent hour basis Montana Limitation in ability to perform at least 1 ADL requiring hands-on personal care Texas Score of 24 or more on ADL functional assessment test and need for at least 6 hours of PAS Type of Disability Almost three-quarters of the programs reported that they serve people with all disabilities (physical, mental, cognitive and brain injury)(Appendix B, p. 19). However, 22% of the programs do not serve people with mental disabilities and 27% do not serve people with cognitive disabilities. During the site visits, these two populations were usually identified as those who "fell through the cracks" of community-based services, particularly if their primary PAS need was supervision. One of the reasons for exclusion of these groups was historical - many states have separate departments for people with mental illness and mental retardation. Massachusetts is currently struggling to adapt their program to meet the needs of people with mental retardation and cognitive disabilities. Maryland was the only program visited which currently offers supervision for people with cognitive or psychiatric disabilities. Other Eligibility Criteria There are other eligibility criteria for the PC-Option programs as well, some of which are controversial. In 1984, half of the programs prioritized people who were at risk of institutionalization (Appendix B, p. 20). Fourteen percent took into account whether family was available to provide services and would only take people whose families were unable or unwilling to provide service. A few programs said they targeted people in particular disability groups or those living alone. Twenty-three percent required that people be able to manage their own attendant. The latter became a major issue in Massachusetts, where DD advocates threatened to sue the state unless regulations were implemented in order to allow people with cognitive disabilities to use surrogates for management assistance. Size of the Program Relative to Potential Users The number of PC-Option recipients per 1000 aged and disabled Medicaid recipients in each state was calculated to arrive at a measure of the degree to which the PC-Option programs served the potential population of eligible Medicaid PAS users, i.e. participation rate. Table 4 indicates that in 1988 South Dakota, Arkansas, Michigan, Missouri, New York and Oklahoma had the highest participation rates while Maine, Massachusetts, New Hampshire and Oregon do not depend to any great extent upon their PC-Option program to serve the population needing PAS in their state. Table 4. Personal Care Option Recipients Per Aged and Disabled Medicaid Recipient By State (1988) State PC-Option Medicaid Disabled Aged and Participation Recipients 1988 Recipients >65 Medicaid Disabled Rate (per 1,000 years old** Recipients** Medicaid Aged and Recipients Disabled Medicaid Recipients AK 94 2,554 3,105 5,659 17 AR 16,539 49,460 48,346 97,806 169 ME 241 19,380 19,596 38,976 6 MD 4000 42,772 42,774 87,546 46 MA 1518 102,223 88,148 190,371 8 MI 33,000 93,239 156,420 249,659 132 MN 1,787 46,161 29,980 76,141 24 MO 22,000 63,506 60,784 124,380 177 MT 736 6,217 8,203 14,420 51 NB 515 16,560 11,942 11,942 43 NV 300 6,195 6,077 12,272 24 NH 55 8,539 5,093 13,632 4 NJ na 57,753 80,119 137,872 na NY*** 89,395 343,608 323,003 666,611 125 NC 3,765 75,054 58,718 133,772 28 OK 14,028 54,665 33,596 88,261 159 OR 300 20,881 22,631 43,512 7 SD 3,282 8,107 7,155 15,262 215 TX 31,266 215,591 131,093 346,684 90 UT 200 7,096 8,703 15,826 13 WA 5,864 48,490 57,879 106,369 55 WV 7,500 24,854 33,147 58,001 129 DC na 10,199 16,758 26,957 na * Combines Personal Care Services Program (79,198) and Long-term Care Project (10,197) ** Source: Health Care Finance Administration *** New York has two different PC-Option funded programs SERVICES PROVIDED Most programs offer a basic core of ADL and IADL services, but only about half provide "paramedical services". Chore, repair and maintenance services are rarely offered. Transportation and escort is available mostly for medical trips. Between 1984 and 1988 there appears to be a decrease in programs allowing paramedical services and respite. The only growth has been in programs providing communication services. The PC-Option service mix is clearly not adequate to enable an individual to be fully self-sufficient, if necessary, living in the community. Personal Care Services The PC-Option Programs offered core personal care services, including feeding, bathing, dressing, ambulation, transfers, oral hygiene and grooming, and skin maintenance (Appendix C, pp. 22-23). Most offered menstrual assistance and bowel and bladder care. Fewer offered assistance with prosthetic devises, range of motion and foot care. Fifty-eight percent allowed assistance with medications, 38% offered assistance with respiration, 29% allowed assistance with catheter care, and 21 % allowed assistance with injections. The likelihood of a program providing these paramedical services using unlicensed providers dropped slightly between 1984 and 1988, which may suggest a growing concern over liability in this area. These findings were borne out by the site visits. Programs offered a basic core of personal care services, but there was wide variation on the provision of more invasive or "paramedical services". Montana has a very strict interpretation of medically related tasks, and only allows them to be provided by Home Health Aides who generally work for the same statewide homecare agency that provides PC-Option services (Table 5). In Texas, even though disability advocates successfully lobbied the State Board of Nurse Examiners to revise regulations in order to allow for delegation of paramedical tasks, the state and private agencies are unwilling to provide these services through the PC-Option. However one Texas agency said that they told attendants that they can do paramedical tasks on their own time without pay, if they so chose. Oregon, which also uses agency providers, developed the Nurse Delegation Act, which permits nurses to sign-off for non-certified attendants to do paramedical tasks. Programs using independent providers are usually more liberal on this issue. Both Michigan and Maryland allow administration of medications which would ordinarily be self- administered if the individual were not disabled, but invasive procedures are not allowed. In Massachusetts, all paramedical procedures are theoretically allowed as negotiated between the assistant and the disabled individual. Table 5. Medically Related Tasks State Regulation Massachusetts Allows respiration care, catheterization, injections, medication administration, ROM, footcare as negotiated with recipient. Michigan Allows assistance with drugs which are "normally self-administered" Maryland Allows assistance with medication if "ordinarily self-administered" Oregon With R.N. approval as per Nurse Delegation Act allows foot nail care, external cleaning of catheter and bag, changing of ostomy bags, maintenance of bowel care, administration of medication, ROM. Montana Does not allow medically related tasks to be provided by non-Home Health Aides (HHAs) Texas Allows assistance with medication if "ordinarily self-administered" The state has revised regulations to allow nurse delegation, but this has not impacted the PC-Option program. HCFA proposed Personal Care Services are defined as "...those tasks directed at the recipient and or his or regulations her immediate environment that are medically related...but would not include skilled services that may be performed only by a health professional." Household Maintenance Services There are a core of household services that most programs offered, including meal and menu preparation and clean-up, light cleaning, laundry and shopping (Appendix C, p. 22). Errands, chores, heavy cleaning, and repairs were less likely to be provided. In some states these services were provided with state funds. Only one program, Massachusetts, allows personal assistants to assist individuals with their children or with paying bills and budgeting. Communication Services Roughly 30% of PC-Option programs reportedly allow providers to assist with paperwork or function as an agency liaison. A quarter allowed assistance with phone calls, interpreting or reading. Three programs allow assistance with handling money (Appendix C, p. 23). Transportation Services In 1984, most programs allowed for transportation and escort (Appendix B, p. 12), though several administrators noted that such services were limited to medical need. In 1988, when the question was phrased to make that distinction, fewer than 1/4 of the programs allowed for non-medical escort and transportation. Three-fourths allowed attendants to escort recipients to medical appointments but only 42% allowed attendants to drive the recipient to the appointment (Appendix C, p. 23). Short-term Services In 1984, 47% of the programs said they provided respite services (Appendix B, p. 12). By 1988, this had declined slightly to 42%. In 1988 only 38% offered emergency services (Appendix C, p. 22). AVAILABILITY AND INTENSITY OF SERVICE DELIVERY Intensity of service delivery is a function of several factors, including the times of day, days of the week services are available, and the total amount of service hours allocated per program recipient. Of particular concern in recent years is the availability of services 24 hours a day for people with high services needs such as high level quadriplegics or children who are technology dependent. Hours and Days Available In 1984, 82% of the programs reported that services could theoretically be arranged at any time (Appendix B, p. 15). By 1988, fewer programs (46%) said that attendants were in fact available 24 hours/7 days a week (Appendix C, p. 24). 5 Four of the programs which provided this data in both 1984 and 1988 had stopped offering services at any time. This means that people who have to be turned or suctioned at night, as well as people who simply want to get up or go to bed when they want, may not get the services at the time that they need them. The large drop in programs allowing services at times of the day or week when the individual may need them may be due to a difference in the way the question was worded in the two survey years. In 1988 administrators may have thought we were asking if they provide 24-hour-a-day services. 20 Service Limits Hours In 1984, over 70% of the PC-Option programs had specified service limits expressed either in dollars or hours or both. There appears to be an increase in PC-Option programs allowing for more than 40 hours per week (Table 6). Service limits do not necessarily translate directly into the actual number of hours an individual receives from a program, however. The average number of hours of PAS per week per recipient in the PC-Option programs (FY 1988) was only 11 hours. Table 6. Percentage of PC-Option Programs with Various Levels of Service Maximums Expressed in Hours Per Week Hours/Week Limit, 1984 (n=9), 1988 (n=17) 0-20 33% 24% 21-30 22% 29% 31-40 22% 12% >40 22% 36% Dollars In addition to hour limits, programs also set dollar limits on what they allowed to be spent for any one individual's PAS. Among the programs which set dollar limits, there appears to have been a decline between 1984 and 1988 in the percentage of programs with per recipient expenditure limits in the higher ranges (Table 7). Table 7. Percentage of PC-Option Programs with Various Service Maximums Expressed in Dollars Per Month Dollars Per Month, 1984 (n=6), 1988 (n=11) 0-$500 50% 27% $500-1000 0 64% $1000-2000 50% 0% >$2000 0% 9% Availability of services 24 hours/day Of special concern in the last few years has been availability of services for people who are significantly disabled. Interestingly, twenty-nine percent of the PC-Option programs in 1984 and 18% in 1988 stated no hourly or dollar limit. One could conclude that these programs allow for services 24 hours/per day. The site visits bolster this assumption. In Massachusetts there is a night rate for people who sleep in the disabled individual's home and act as a night attendant. There is even a distinction in the night rate based on the number of actual hours of hands on service the attendant performs. In Michigan there are 1800 "exceptions" to state hour allowances, and some of these people are quadriplegic using ventilators who receive $2000/month from the PC-Option program. Maryland has experimented with a group living situation in a Baltimore public housing unit in which people pool their PAS allotments in order to pay a night attendant for the group. Relationship between provider type and hours of service There is a strong relationship between the number of hours an individual is able to receive from a program and the type of provider, when one looks at all the PAS programs (Table 8). Programs which use independent providers provide the most hours of service per recipient. Table 8. Average Number of Hours Per Week Per Recipient By Provider Type 1984 and 1988 All Funding Sources Uncombined Provider Programs* Combined and Uncombined Provider Programs Delivery Mode 1984 1988 1984 1988 Independent 25 hours 22 hours 21 hours 20 hours (n=17) (n=14) (n=31) (n=28) Agency 16 hours 15 hours 13 hours 15 hours (n=22) (n=17) (n=41) (n=34) Government 3 hours 2 hours 10 hours 6 hours (n=4) (n=1) (n=30) (n=14) *The combined provider programs are ones in which two or three different providers are available through the program. The uncombined are ones in which only one type of provider is utilized by a program. Montana gives us a window on this issue because of its change from independent providers to a single agency provider. From 1987, when this change took place, to 1990, there was a reduction in the maximum hours allowed per client per week from over 100 hours to 40 hours. This took place in response to the provider agency's need for administrative and withholding costs to be covered by their reimbursement rate. It may be that actual cost of the program to the state had been near the agency figures, but the administrative costs of the program were embedded in the larger government administrative structure. This is often the case with other programs as well, whether they are Medicaid funded or not. In conclusion, there has been a slight increase in the number of programs that say they will allow more than 40 hours of PAS for recipients who need that level of service. However, among programs which set per person expenditure limits, there has been a slight decline in the maximum monthly expenditures. It appears that less than 20% of the PC- Option programs allow recipients to receive services 24-hours-day. There is a strong relationship between the number of hours an individual is able to receive from a program and the type of provider. In general, programs that use independent providers provide more hours of service. PROGRAM GOALS Description of Goals The answers we received in our survey questionnaires regarding program goals were not illuminating. In general, administrators said the programs goals were preventing institutionalization and keeping people in the community. No PC-Option program had the goal of enabling an individual to work. However, with the passage of Section 1619 of the Social Security Act, which allows SSI recipients to work and still maintain their Medicaid benefits if their income and assets do not exceed a certain amount, PC-Option programs can now enable individuals to go to work. Differences between the personal care option programs became much clearer from the site visit experience. In fact, the personal care option programs have different objectives from state to state. Table 5 reflects the goals stated by the site visit programs. These goals are a key to understanding why states have designed the program service package and other aspects of the programs the way they have. In each case, pressure has been brought to bear on the program either from within the state system or from advocates to expand the mission of the program in order to serve a broader population of people who need PAS. These program goals are not static, and as the constituencies are evolving and changing, so are the goals. Table 9. Goals of the PC-Option Programs State Program Goal Massachusetts To enable people with permanent or chronic disabilities to live in the community who might otherwise be institutionalized Michigan To keep people at home, encourage self-determination, authorize services "only to the extent necessitated by the individual's functional limitations," and maintain informal supports Maryland To support informal caregivers, and prevent or delay institutionalization Oregon To maintain the PC-Option as a stop-gap in case the state loses its waivers, and to serve disabled children in foster care settings Montana To help people stay in their own homes as long as they can rather than go into nursing homes Texas To provide "care to those who could not access custodial placement" when ICF-2 level programs were closed down and to maintain the Federal match for these people. Degree to Which Goals are Met Massachusetts The Massachusetts program has succeeded admirably in designing a program to help people with severe physical disabilities, who have the capacity for self-direction and can make the transition into community living. The program funds transitional living arrangements while people are learning to manage their own services, and training in how to manage an attendant and how to recognize and deal with changes in their medical status. The program allows up to 24 hours of service per day through the use of a night time wage. It allows attendants to provide paramedical services based on an arrangement between the provider and the recipient. Recipients generally seemed very satisfied with the program. Main difficulties appeared to be with the withholding arrangements. The program has been pressured to add the goal of assisting community living transitions for people with mental retardation as well. This is a new development, and it is too soon to know how well the program will meet this objective. Michigan Michigan has been successful at serving people who have family or other informal/volunteer supports available. However, those who have high hour needs and little support cannot get enough reliable assistance. According to county caseworkers, the program has succeeded in keeping people out of nursing homes. Michigan offers a very wide range of personal care services and some paramedical services, if they are directed by the recipient. It also allows attendants to provide a broad range of household and chore services, though it doesn't allow for non-medical escort and driving. The program does not provide emergency backup services. The service limit, $333 per month, is relatively low, but exceptions are allowed. Though more and more people with more severe disabilities are being maintained on the program, the average hours per week is only 17. Until recently when case management became more available, recipients were generally on their own in managing services. Maryland The original goal of this program was to support informal caregiving systems and was based on the Oklahoma model. Very early in the program's history, it became clear that the majority of people acting as providers under the PC-Option program had no personal connection to the recipient prior to employment. So the goal of using the program to support informal caregivers has never been met. The success in meeting the goal of prevention or delay of nursing home placement is difficult to assess. Maryland does have a low nursing home rate, but it seems unlikely that the PC-Option program was the cause of this. It appears that the real result has been that consumers are forced to make do with fewer hours of service than they need and/or find ways to supplement attendant wages. Oregon In Oregon the PC-Option program was housed in the Senior and Disabled Services (SDS) Division until 1990. SDS saw the PC-Option as incompatible with their goals of reducing the nursing home population, because it has an income eligibility limit far lower than that for Medicaid nursing home eligibility. They feel this has created a nursing home bias. Consequently the division relies more heavily on two waivers which have the same income eligibility as nursing homes. It moved the PC-Option program to the Office of Medical Assistance, where it is being used to serve children with disabilities. It is too soon to assess the success of meeting this new objective. In the meantime, SDS continues to use the PC-Option program to provide personal care services for a limited number of people on an intermittent basis. Montana Montana sees the PC-Option as helping people to stay out of nursing homes, and they point to the lack of increase in nursing home beds in Montana as a sign that they have succeeded. It may be that the existence of the waiver program has also contributed to this outcome. Advocates in the state are very anxious to push the personal care option program toward the goal of meeting the needs of people with severe disabilities who are capable of self direction. This would require a change in the degree of control consumers are allowed over hiring, training, supervising and firing their attendants, an increase in hours, and permission to receive personal assistance outside the home. Texas The Texas program was aimed at bringing Federal matching funds to the state in order to provide "care for those who could not access custodial placement" because the state closed the ICF-2 level nursing homes. In this, the program succeeded admirably. Over the years the program has raised its functional assessment criteria to weed out those who do not need personal care services of some kind. It offers most personal care services and household/chore services. The service limit is 30 hours per week, but advocates are pushing the state to raise these limits to better serve people who are more significantly disabled. Beside the low limits on hours per week, it has no requirements that the homecare agencies provide emergency backup services, although changes are currently being made in this area. In general, one may conclude that the goals the states set for these programs have framed the development of the programs. As noted earlier, however, as times change and new populations come forward demanding services, programs have evolved and will continue to evolve to address the need in some fashion. ACCESS CONTROL MECHANISMS Access to programs is controlled in a variety of ways. Some of them are spelled out in program eligibility criteria covering such things as income and age eligibility and numbers of ADL deficits. Others are a result of the existence or lack of certain program features such as recipient outreach programs, service limits (defined in terms of hours or money), times when services are available, or types of services allowed (such as paramedical, emergency back-up or supervision). Others involve deliberate prioritization of people. Still others involve external factors such as unavailability of providers in rural areas or in wealthy areas. Finally, program managers may deliberately set population target priorities to control access. Eligibility Limits to Access The formal eligibility criteria regarding assessment for service need varied among the PC-Option programs visited (Table 10). The assessment of need process ranges from very formal needs assessments with cut-off points (Texas) to very informal assessments based on professional judgement (Maryland). In Oregon the assessment was more comprehensive, but it used professional judgement as to which programs could fill which needs for service. Table 10. How Need For Service Is Defined and Assessed State Definition and Method of Assessment Massachusetts Need 10 or more hours per week of ADLs or 14 or more hours of assistance with ADLs and IADLs based on Occupational Therapist (OTR)/Registered Nurse (RN) team in-home assessment of functional limitations Michigan Need for personal care services based on functional assessment by DSS adult services worker Maryland Limitations in ability to perform ADLs based on professional judgement by Nurse case monitor in recipient's home. Oregon Child in foster care needing ADL support based on RN assessment of total care needs or adult needing assistance with at least 1 ADL with need for low or intermittent hours of skilled Personal care as assessed through comprehensive assessment of person's total needs using the CAPS assessment tool by Area Agency on Aging (AAA) or Disability Service Office caseworkers. Montana Limitation in ability to perform at least 1 ADL and need for hands-on personal care (not just supervision), based on functional assessment by agency RN. Texas Score of 24 or more on ADL functional assessment test, need for at least 6 hours of PAS and state case manager/state nurse supervisor judgement Program Features Limiting Access Service limits, service availability, income eligibility criteria, and limited outreach function to limit access to the programs (Table 10). Income eligibility was mostly based on people being SSI recipients or at that income level. If there is a ceiling on the number of hours provided or the amount of money allowed per recipient, people with high needs and no other source of support either cannot be on the program or are forced to make do with far fewer hours than they need (i.e. Montana, Maryland and Texas). If there is a lower limit to service, e.g. 6 hours per week in Texas, 10 hours per week of ADLs or 14 hours/week of ADLs and IADLs as in Massachusetts, this eliminates the people who need very few hours a week. If certain services are not offered, some people may not be able to use the program. For example Texas and Michigan do not provide emergency back-up services, so people who are significantly disabled and not able to go even one day without service cannot safely be on the program. People who need high hours of service, or at least someone on call 24 hours a day, find that the Maryland, Oregon, Montana and Texas programs are not adequate and may remain in nursing homes or hospitals. Until recently, the Massachusetts program limited access to only those who were able to manage their own attendant. A major limiting program feature can be the absence of outreach programs to potential recipients. Universally it appears that outreach processes are informal and depend on word of mouth and the knowledge of professionals who come in contact with disabled people. In some cases programs made some effort to contact discharge planners, service providers and disability groups to inform them of the program's existence. In only one state, Montana, was there a formal outreach campaign carried out and that was done for the new waiver program. The results of this were that as people learned about the waiver for older people they also learned that the Medicaid department had another program for people who are not eligible for the waiver. As a result the number of people on the PC-Option program increased dramatically. If one can generalize from this case, it appears that a major way programs limit access is through not informing the general public of the existence of programs. Referrals between state administrative units (e.g. departments, divisions) appear to be uncommon. For example, after Oregon reorganized the state bureaucracy and combined income support and PAS eligibility determination functions into the same division, there was an increase in the number of people accessing PAS services, as new cases suddenly were identified. External Factors Limiting Access External factors also work to limit the program's population, and these differ from state to state as well. For example, until recently the only way to access the PC-Option program in Massachusetts was through one of six centers for Independent Living (ILCs). This meant that if one did not live near a center, one had to travel to get services. In addition, some people may not know about or may not feel comfortable accessing services through ILCs. The lack of a large population of people willing to work for low wages has drastically limited access to the program in certain areas of Maryland. In many states, there are disparities between rural and urban access to PAS. It appears that programs that use agency providers in rural areas (e.g. Texas and Montana), or which have involved case managers which train recipients to be good managers (e.g. Maryland), may do a better job of helping rural recipients recruit providers. Population Target Priorities Some of the programs have deliberately set out to limit access in order to reduce expenditures. In the face of the current budget crisis (1991), Michigan has dropped from the program people who receive purely chore services because they are solely state funded. Maryland has proposed dropping all level I (those needing only 1 visit per day) recipients though there has been a large backlash to this proposal. Texas increased the limitation requirements in order to meet budget constraints but still insure that people who need personal care services would be included. The ability of states to use all these gatekeeping and access control mechanisms in order to control the number of people in their programs is circumscribed by political factors. In some states, disability advocates effectively counter efforts to limit access to what tend to be very popular programs(despite their limitations). DELIVERY MODE There are several different ways in which providers are employed. These are commonly referred to as delivery modes. Agency providers work for non-profit or for-profit agencies and are generally considered the employees of the agency which hires them. Independent or individual providers have different conditions of employment depending upon the program and state. They can be considered self-employed, employed by the disabled recipient or employed by the state for purposes of some types of income withholding and not for others. Government agency providers fall into two different categories. Some civil service employees experience the same wage scale and benefit packages as other employees of similar skill and rank. More recently governments have begun employing PAS providers on a contract basis. These are generally part time workers who are not part of the civil service personnel pool. Their rates of pay, working conditions and benefits are similar to those of independent providers. PC-Option programs tended to use either independent providers or agency providers (Table 11). The number of programs using government civil service employees as providers dropped considerably.6 Table 11. Percentage of PC-Option Programs Using Different Provider Types by Year Year Independent Providers Agency Providers Government Providers 1984 60% (n=12) 45% (n=9) 40% (n=8) 1988 46% (n=11) 63% (n=15) 19% (n=4) 6This drop in use of government civil servants may be spurious because the 198.5 survey did not distinguish between civil service and non-civil service employees. Benefits and Wages The delivery mode impacts the wages and benefits offered to attendants. Agency providers and government workers receive the best wages and government workers clearly receive the most benefits (Table 12). Independent providers continue to be the most poorly compensated providers. Table 12. Provider Benefits and Wages Provider Type Independent Agency Government Providers Providers Workers 1984 1988 1984 1988 1984 1988 Average hourly wage $3.89 $4.59 $5.12 $6.02 $3.93 $8.00 Low $ .42 $1.70 $3.40 $3.35 $3.85 $4.66 High $8.25 $8.30 $9.00 $11.00 $4.00 $8.00 Average number of benefits .8 .9 3.0 2.7 5.0 4.0 Low 0000 10 High 337 878 Relationship between provider type, payment mechanism and payment rate The three examples encountered on the site visits illustrate only some of the variations of arrangements possible for independent providers (Table 13). Massachusetts has different rates for night and day attendants and compensates workers at a higher rate than all the other programs. It also pays additional amounts for work on holidays. Michigan has a straight hourly minimum wage rate which includes the employer and employee share of FICA. Maryland pays by the level rather than having an hourly rate, although there is a tendency for nurse supervisors, who do much of the recruiting, to translate the levels into about $5 per hour. No state or federal tax withholding is done by any of these states. There are other state programs, such as California's Title XX funded In-Home Supportive Services Program, which do withholding for independent providers. These states are vulnerable to suits regarding who is the employer (this issue is discussed below). Being an agency-employed provider does not necessarily guarantee attendants better working conditions. As one can see in Table 9, there are major differences in pay and benefits for agency providers. Texas agencies which operate on a state defined rate provide the bare minimum in wages and benefits, while Montana's single agency contractor pays somewhat better wages and benefits. Table 13. Type of Provider, Payment Mechanisms and Basis of Pay State Provider Type Payment Mechanism Basis of Pay Payment Rate and Benefits MA Independent Intermediary agency cuts the check, attendant paid by disabled individual Hourly rate which varies for day, night and night hands-on service $7.50/hour day rate, $15.00 per night, additional pay for hands-on PAS at night, No benefits MI Independent State cuts dual party check requiring attendant and disabled individual signature Hourly rate $3.35/hour, FICA withheld if arranged between attendant and recipient MD Independent State Medicaid agency pays provider directly Four levels of pay based on number of visits and type of disability $10/one visit, $20/two visits,$25/day, No Benefits OR Agency Participating agency pays provider Hourly rate $3.65-$10/hour, FICA, worker's compensation, unemployment, transportation costs MT Agency Contract agency pays provider Hourly rate $4.65/hour, FICA, worker's compensation, unemployment, vacation, sick leave, health insurance, transportation costs TX Agency Participating agency pays provider Hourly rate $3.35 - $4.41/hour, FICA, unemployment, some agencies provide workers compensation and transportation costs LIABILITY Many state administrators suggest that concerns over liability have shaped the direction of their programs. There are two types of liability that seem to be of importance: 1) Liability or responsibility for withholding federal (i.e. FICA, federal unemployment) and state (i.e. worker's compensation and disability) taxes, and 2) Tort Liability or legal responsibility for attendant negligence. Utilizing homecare agency providers is the major way to shift liability away from the state. States which utilize independent providers have different ways of defining who is the employer. Concerns over tort liability have impacted the provision of "paramedical" services in many states, along with state nurse practice act regulations. These regulations describe what tasks come under the supervision of registered nurses and which do not. Any program that does not follow nurse practice acts is vulnerable to fine and possibly litigation from the state. Who is the Employer? Each state must address these liability issues by determining who can be considered the legal employer of the attendant. States have answered this question in different ways (Table 14). Table 14. Who is the Employer? State Regulation Massachusetts Attendant is an independent contractor in the employ of the Medicaid recipient Michigan Recipients are the employers for purposes of withholding. Assistants are either self employed or domestic workers in the employ of the recipient. Maryland Attendants are self employed Oregon Attendants are employees of homecare agencies Montana Attendants are employees of homecare agency Texas Attendants are employees of homecare agencies In the case of programs like the ones in Oregon, Montana and Texas, the homecare agency is the employer and, presumably, is liable for state and federal withholding. However, the degree of withholding appears to vary. In Texas, for example, the homecare agencies are not required to pay worker's compensation, although some agencies do so voluntarily. In general, one of the major reasons some states decide to utilize homecare agency providers is to shift liability away from the state. One of the site visit states, Montana, was so concerned that the state might be deemed the employer (and therefore be required to provide government worker benefits to attendants) that it switched from an independent provider mode to a statewide homecare agency model of service provision (see Kennedy and Litvak, 1991 for details). In general, the issues of liability and who is the employer is clear in the case of agency employees. The agency carries liability insurance and does all the withholding. States which utilize independent providers have different ways of defining who the employer is. None of the three site visit states which use independent providers have been sued for attendant negligence, and the state administrators do not seem overly concerned with this issue. However, the economic and administrative responsibility for tax withholding is a major concern. In Michigan, the recipient is the employer and the attendant is an independent contractor. The recipient receives a two party check from which s/he is to withhold the employer's share of FICA and from which the employee is to set aside his/her share. Theoretically, the recipient files a Federal 1099 form every three months with the employer share of social security. In practice, this rarely happens. The development of the two party check system appears to be a way for the state to avoid responsibility for federal income tax withholding. The state sets a per person expenditure cap to avoid being required to reimburse for federal unemployment insurance. The Department would like to automate the reimbursement system and do payroll deductions, but the start up cost and policy ramifications are seen as prohibitive. (See Kennedy and Litvak, 1991, for fuller discussion of the Michigan program). Massachusetts PC-Option attendants are also independent contractors in the employ of the Medicaid recipient. Like Michigan, the system is coming under scrutiny by the IRS. The Massachusetts Centers for Independent Living (CILs) function as flow-through agencies for attendant wages. The recipient receives the check and pays the attendant. The IRS is asking the CILs to send in 1099s on all the attendants, but only some CILs are currently complying. Without the 1099s, the IRS would not know who is employed as an attendant under the program. Neither Michigan nor Massachusetts withholds workers compensation or disability. In contrast to both Massachusetts and Michigan, the state of Maryland does send in 1099s for all the attendants it has registered under the program. The attendant is seen as self- employed. The state has been very careful to maintain the "level of care" payment system in order to avoid the appearance of being the attendant employer. The state has held onto the system which pays $10 a day for one visit, $20 for two visits, and $25 a day for anyone needing a 24 hour/day live-in. They have maintained this "level of care" system, even though the state agrees that it has led to extreme shortages of qualified providers and cannot accommodate recipients who are significantly disabled unless they live together in congregate housing and share attendants. The state of Maryland has been sued over worker's compensation, and it was deemed not liable because the state does not set wages and hours. There is no easy solution to this issue, because there are advantages and disadvantages to using agency and independent providers. On the plus side independent providers generally cost less because there is no agency overhead rate to be paid. Critics like Sabatino (1990, p. 24) maintain, however, that if the independent providers were flanked by the necessary management and training supports to maintain quality, the independent provider mode would not be cheaper. Disability advocates claim that the advantage of independent providers is that they are less professionalized and more amenable to training and supervision by the disabled user of their services. Conversely, agency providers are more costly per hour because of agency overhead rates which may amount to as much as 100% for every hour provided. According to consumers, agency providers tend to be more responsive to professional goals and agency supervision than to recipients' wishes. It seems most likely that both types of providers have a role to play in a comprehensive system of PAS. New solutions for withholding and liability protection need to be explored for independent providers. One possibility, for example, is the formation of a state-wide association of independent providers which would purchase group liability and health insurance for its members. States can also reimburse recipients for what they expend on purchasing individual workers compensation insurance. Nurse Practice Acts As noted above, also involved in the liability issue is the question of nurse practice acts. Presumably they serve to protect providers against liability claims and are meant to insure quality. However, disability advocates and administrators have observed that these regulations increase the cost of PAS by unnecessarily "medicalizing" tasks that family members are routinely taught to do and require recipients to have a multiplicity of providers coming into their home. Moreover, relying on medical professionals may impede the independence of consumers. In Montana, the Nurse Practice Act is scrupulously observed by the statewide homecare provider agency. In Oregon they have passed a Nurse Delegation Act to allow the nurse to sign off for non-certified attendants to do paramedical tasks. Even though in Texas changes were made in the regulations promulgated by the state board of nurses to allow physicians to delegate paramedical tasks to paid attendants, the state does not allow physician delegation under the PC-Option program. Some of the independent provider model programs are more liberal on this issue. Both Michigan and Maryland allow administration of medications which would ordinarily be self administered if the individual were not disabled. However, invasive procedures are not allowed. In Massachusetts all paramedical procedures are allowed as negotiated between the assistant and the disabled individual. QUALITY ASSURANCE MECHANISMS There are a number of ways in which states and the federal government have tried to influence the quality of the PC-Option programs. These include: state level oversight of overall program compliance standards, case level oversight, nurse supervision of the attendant, attendant training and screening, and recipient complaint and grievance mechanisms. All states have some of these quality assurance mechanisms in place. Which mechanisms a state employs depends upon their philosophy or view of quality assurance. States vary greatly in their approaches to quality assurance. Some states emphasized quality assurance from "below", i.e. training the recipient to recognize quality and providing avenues for problems to be addressed. Others have relied heavily on quality assurance systems from "above", i.e. paper reviews and site visits. Some states limit effort to minimum compliance with regulatory requirements. In Massachusetts, quality assurance rests on: 1) extensive training of the disabled user in attendant management techniques, the elements of quality service, and health condition self-monitoring and, 2) attendant wages which appear to be high enough to attract a pool of workers. Quality assurance in the Michigan program appears to rest more on the fact that families are the main providers of services and are considered to be responsible for service quality monitoring. The Maryland system rests on the independent nurse case monitors. Texas and Montana have designed systems in which Medicare licensed homecare agency nurses are the main guarantors of quality, in conjunction with very close agency oversight by the state. State Level Oversight All but one of the site visit states which have provider agencies performs some sort of oversight of these agencies. Texas has an intensive top-down compliance monitoring system to evaluate provider agencies. In addition, state-funded prior approval nurses determine medical need and monitor consistency of reporting between physician referral, state case managers service plan and agency R.N. assessment. There is no system like this within the Massachusetts Department of Public Welfare (DPW). Instead, DPW relies on the Department of Rehabilitation for this function as part of its review of Independent Living Center activities (most of the provider agencies are ILCs). In Montana, the state does a compliance review of administration and providers in its single, state-wide provider agency. The state monitors turnover, training, billing and orders. Case Level Oversight States vary in the method and frequency of case level monitoring (Table 15). At one end of the continuum is Massachusetts, which uses R.N.s contracted to Centers for Independent Living and other "provider" agencies to do home visits once a year, but considers the trained recipient to be the mainstay of case level quality assurance. Michigan uses state employed R.N.s for paper reviews, and assumes that most recipients, even though they receive no training, are capable of monitoring their own services. For those who are new to the program or are more significantly disabled, Michigan uses case managers who do home visits. At the other end of the continuum are Montana, Oregon and Maryland and Texas. Texas uses state employed R.N.s for paper reviews, but in addition requires provider agency R.N.s to conduct unscheduled visits to recipient homes every two months. Similarly Montana, Oregon and Maryland depend heavily on agency or self-employed R.N.s to do frequent home visits. Table 15. Case Level Oversight State Nature of Case Level Oversight Massachusetts Intensive peer training on attendant management and monitoring health care for new recipients; Annual scheduled home visit by R.N. from Center for Independent Living (CIL) or other provider agency Michigan Case management for those with multiple providers, high service needs, poor informal networks, potential for abuse or neglect, and new cases; Annual state R.N. paper review Maryland Home visit by self-employed nurse case monitor or county health nurse every 2 months Oregon Agency R.N. home visit every 3 months for foster children and every 6 months for adults Montana Homecare agency nurse supervisor unscheduled visit every 2 months Texas Agency RN home visit every 60 days, social worker home visit every six months, random on-site inspections to monitor agency compliance by state nurses Attendant Screening and Training Determining provider qualifications is done primarily through screening attendants before they are employed (Table 16) and/or training them afterward (Table 17). Again, the method used depends primarily on the program's philosophy. Those which see the consumer as being the judge of quality, i.e. Massachusetts, leave these matters mostly to the recipient. Maryland screens independent providers by checking people's social security numbers against a list it maintains of people fired from nursing home jobs; the state also checks references and requires a physical exam. Even with all these checks the quality of attendants appears to be very poor in Maryland, based on consumer, advocates and nurse case manager statements. We heard no such complaints in Massachusetts. In the other states that use agency providers, the agencies do the reference checks. Texas does a criminal check as well. Table 16. Who is Responsible for Attendant Screening? State Responsible Party Massachusetts Recipient screens attendants Michigan Recipient screens attendants Maryland State screens for past history of being fired from nursing home jobs, checks references, requires physical examination Oregon Agency screens Montana Agency screens Texas Agency calls employer and personal references. State runs a criminal check to screen for felony convictions Massachusetts and Maryland are different in their approaches to training as well (Table 17). Given their commitment to consumer control, they see the training of the attendant as the prerogative of the recipient. The Maryland program, which is not based on a consumer control ideology, requires the nurse case monitor to train the attendant on the job. Texas, which relies on agency providers, also allows for on-the-job training by the agency nurse, who must certify the aide as competent before services are initiated. Oregon and Montana specify hours of training required and, to some extent, dictate content. Table 17. Nature, Extent and Source of Attendant Training State Description of Training Massachusetts Recipients responsible for training Michigan Recipients responsible for training Maryland Attendant trained on the job by Nurse Case Monitor Oregon State provides 120 hour Certified Nurse Assistant Training for agency providers Montana 8 hours of initial classroom training, plus 8 hours in-service every year plus on-the-job training by homecare agency R.N. Texas Attendant trained on the job if necessary by agency R.N. Recipient Complaint Mechanisms Complaint procedures and appeal and grievance mechanisms are the most formal way that recipients have to address problems regarding service denial, assessments of need and problems with service delivery. States' complaint and grievance mechanisms which bring quality problems to the attention of program officials vary, as do the degree to which they prepare and inform recipients to be able to exercise these rights. Table 18. Recipient Complaint/Grievance Mechanisms State Mechanism Massachusetts Recipient responsible for monitoring own service. Can appeal for review by another Independent Living Center. Recipients extensively trained in attendant management and self monitoring for health changes. Michigan Recipients responsible for monitoring own service and speaking up. Can complain to service workers who authorize service. Maryland Recipients can complain to the Nurse Case Monitors or to the state for a formal review. Oregon Recipients may complain to State case workers and agency RNs. The state considers the case workers to be consumer advocates. The Oregon Disabilities Commission runs a toll free hotline for consumer complaints and independent living centers also provide consumer advocacy. State does a consumer satisfaction survey. Montana Quarterly recipient satisfaction survey. Recipient complaints received by nurse supervisor. The state has a formal appeals process if recipient cannot resolve issue with homecare agency staff. Texas Client may seek formal resolution of conflicts through a meeting of recipient, attendant, caseworker, agency R.N. supervisor, and state prior approval nurse. PROGRAM DESIGN DISCRETION Section 42 CFR 440.170(f) of the Medicaid regulations authorizes States to provide personal care services as an optional state plan service. This section states that "personal care services in a recipient's home... [be] prescribed by a physician in accordance with the recipient's plan of treatment and provided by an individual who is -- (1) Qualified to provide the services; (2) Supervised by a registered nurse; and (3) Not a member of the recipient's family. There are no other regulations, just "Guidelines", which states have more or less been willing to follow (HCFA, 1979). As a result, states have exercised a great deal of discretion and flexibility in designing Medicaid personal care services benefits under the existing Medicaid statue and regulations. In 1988, HCFA proposed new regulations for the program in an attempt to more concretely define "personal care", service location, "home", "provider", and the nature of physician and nurse involvement (HCFA, 1988). HCFA collected comments on the proposed regulations, but has not promulgated them in final form. The interview protocol used during the site visits asked interviewees what the impact of these regulations would be on the state program. What follows are several tables and discussion regarding how freely the states have interpreted the original PC-Option regulations and a comparison to the proposed regulation standard. Household and Chore Tasks HCFA proposed that household and chore services can only be provided as directly related to personal care needs, and cannot constitute more than one third of the total time expended per visit (Table 19). Documentation of adherence to this formula was seen as untenable by several state administrators, regardless of the degree to which their programs offered household and chore services. Enforcement of this regulation would change some programs more than others. Michigan and Maryland appear to allow household tasks to people without hands-on personal care needs. This may be because these programs were originally social services which provided housekeepers for a small number of hours per week. Michigan's program until recently allowed homemaker services and even guide dog maintenance to people without daily ADL needs. The Maryland program allows for supervision for people who need cognitive assistance rather than hands on personal care. Administrators at the other sites felt that HCFA regulations, although they might be difficult to enforce, posed no threat to their current system of service delivery. Montana, for example, has developed very strict regulations which do not allow housekeeping tasks unless they are accompanied by at least one personal care task. Massachusetts administrators said that their current caseload receives such high levels of personal care that holding the attendants to providing personal care during 2/3 of each visit would probably not make any difference in the program. Given that the Oregon Program is only used for short-term personal care, the proposed regulations would have no impact. Texas provides no chore services and only allows housekeeping services for people who use personal care. Table 19. Proportion of Household/Chore to Personal Care Tasks State Regulation Massachusetts Program serves only people with severe disabilities who need extensive personal care as well as homemaker/chore services. Michigan Allowed chore and homemaker services, guide dog maintenance for people without daily PAS needs. Maryland Allows supervision if related to ability to perform ADLs. Oregon Does not use PC-Option to provide household/chore services. Montana Only provides homemaking if in conjunction with at least one personal care task. Does not allow supervision as a personal care task. Texas Only people with personal care needs (including meal preparation) get homemaker services. HCFA Proposed Household and chore services can only be provided as directly related to personal care Regulationsneeds, and are not to constitute more than one third of the total time expended per visit. Service Location HCFA proposed that services only be provided in the home or in connection with brief services outside the home for medical exam or treatment or shopping to meet health care or nutritional needs. In general it appears that states have interpreted this even more narrowly than HCFA proposed. Massachusetts allows for escort and driving for medically related travel, a term it defines more broadly than HCFA proposed. In the past, Montana allowed attendants to accompany recipients outside the home, but when administrators heard of several rulings in other states which held against this, they changed the Montana regulations to not allow recipients to be accompanied by attendants outside the home at all. It is interesting that several of the site visit states did not even allow for trips to the doctor. In Maryland medical escort is allowed but apparently attendants refuse to escort recipients on medically related trips because there is no mileage reimbursement and no hourly pay to compensate them for having to wait long hours in the clinics and doctor's offices where Medicaid is accepted. It should be pointed out that several of the site visit states allow attendants to accompany recipients outside the home under their waiver programs, e.g. Texas, Montana, Oregon. Significantly disabled people need such services to avoid being institutionalized in their own homes. Changes in this area are certain to occur in 1994 when states will be allowed to provide services outside the home as a result of the 1990 Omnibus Reconciliation Act. Table 20. Site of Service Provision: Transportation, Driving, Escort State Regulation Massachusetts Allows escort and driving for medically related travel, including laundry, food and shopping. Michigan Does not allow medical transportation. Assistance with shopping is allowed. Maryland Only escort to medical appointments allowed, but program does not reimburse mileage. Oregon No transportation/driving/escort allowed. Montana Does not allow attendant to accompany recipient outside the home. Texas Allows medical escort. HCFA Proposed Services can only be provided in the home or in connection with brief services outside the Regulationshome for medical exam or treatment or shopping to meet health care or nutritional needs. Exclusion of Service to Those in Institutions of More Than Four Individuals HCFA proposed the exclusion of services for people living in institutions serving more than four people (e.g. Board and Care Homes, group homes). Instituting this ruling would have major impact in several states which use personal care option funds to supplement payments to adult foster care, i.e. Massachusetts, Michigan, Montana and Oregon (Table 9). Oregon has foster care arrangements that are larger than 4 people, and the PC-Option is used there. Maryland, Michigan and Montana use personal care monies to supplement board and care arrangements, though Maryland only allows the PC-Option to provide for those in homes of no more than 4 people. Oregon and Montana use their personal care option provider agencies to provide PAS in assisted living situations. Massachusetts is considering this also for people living in what Massachusetts calls rest homes. Montana uses their PC-Option providers in group homes as well. In contrast, Texas does not use personal care option funds for any people residing in congregate housing. Table 21. Service to Institutionalized Recipients State Regulations Massachusetts Allows adult foster care payment for personal care as a supplement to the regular allotment. State considering use in congregate housing for people with AIDS and in "Rest Homes" (Level III Nursing Homes). Michigan Allows in licensed residential care facilities, adult foster care (Board and Care of 6-12 beds) and homes for the Aged of <100 beds. Maryland Allows for high need recipients in small Board and Care homes or other congregate arrangements of <5 people. Oregon Uses PC-Option in foster care homes which are larger then 4 people and in "assisted living arrangements" (single apartment congregate meal arrangements) Montana Allows in apartment complexes for older people, Board and Care and in Foster and Group Homes Texas Does not allow in congregate living settings HCFA Proposed Exclusion of services for institutions serving more than four clients (e.g. Board and Care Regulations Homes). Family Providers The HCFA definition of family in the proposed regulations was long and exhaustive. As can be seen in Table 10, only one state, Montana, uses the definition of family that was contained in the HCFA proposed regulations. Maryland adds aunts, uncle and cousins. Michigan has the narrowest definition of family. All the states exclude spouses from being paid providers. Even though this seems to be universally accepted, many advocates for people with disabilities feel it is a poor regulation. In addition, in many of these states if one has a spouse able to provide PAS the state will not pay a non-family member to be a provider. This, combined with strict eligibility requirements, has resulted in people not getting married or even getting divorced in order to receive some paid attendant services. Table 22. Family Members Who Cannot Be Paid for Providing PAS State Regulation Massachusetts Child, spouse, parent, son-in-law, daughter-in-law Michigan Spouse, parent of child <18 years old Maryland Spouse, sibling, parent, child, in-laws, step parents, step children, cousins, nieces, aunts, uncles Oregon Spouse, Parent of child <18 years old Montana Uses Proposed HCFA definition of family Texas Spouse, legal guardian Proposed Exclusion of family providers, defined as: husband, wife, parent, sibling, adoptive child, Regulations adoptive parent, stepparent, stepchild, stepbrother, stepsister, father-in-law, mother-in-law, son-in-law, daughter-in-law, sister-in-law, brother-in-law, grandparent, grandchild Physician Oversight HCFA defined the nature of physician involvement to review and reauthorize of the plan of treatment at least every six months. Only one state, Texas, required physician review every six months, as proposed by HCFA. Instituting this regulation would appear to create the most difficulty for Michigan, which had physicians review their orders on an as needed basis. Table 23. Frequency of Physician Review/Reauthorization State Regulations Massachusetts Yearly reauthorization Michigan Physician review as needed Maryland Annual physician review Oregon Annual physician review or as needed Montana Annual physician review Texas Physician review every six months HCFA Proposed Physician must review and reauthorize plan of treatment at least every six months. Regulations Nurse Supervision HCFA's proposed regulations specified a visit by a registered nurse or "licensed practitioner of the healing arts" to the consumer every three months to assess health status, need for PC services, quality of services, and to review plan of treatment. Michigan again had the most liberal interpretation of this part of the original regulations, only requiring an annual paper review by the nurse. Massachusetts requires an annual visit. The other site visit programs require frequent nurse visits. In two states, Maryland and Texas, even more frequent visits are required. Table 24 Frequency and Character of R.N. Oversight State Regulations Massachusetts R.N. visit annually Michigan R.N. paper review annually Maryland R.N. case monitor visit every 2 months. Annual eligibility review by state R.N. Oregon R.N. visit every 6 months for adults, every 2 months for children Montana R.N. visit every 3 months Texas R.N. visit every 60 days HCFA Proposed A registered nurse or "licensed practitioner of the healing arts" visit the consumer every Regulations three months to assess health status, need for PC services, quality of services and to review plan of treatment In summation, it appears that the proposed HCFA regulations would change some programs more than others. Massachusetts and Michigan, for example, would have to radically change their programs to meet the proposed regulations. Montana's program already adheres to many of the proposed regulations. However, even the states which comply with some or most of the proposed regulations would have difficulty documenting that compliance for a federal monitoring agency, and several state administrators expressed serious reservations about the value of imposing new federal requirements on their programs. ROLE OF PERSONAL CARE OPTION WITHIN THE STATE Site Visit States The PC-Option programs fill different niches in the spectrum of community-based PAS in every state. The program in Oregon is a small and insignificant part of the state Long-term Services spectrum. In Massachusetts it is also small and serves the niche of significantly disabled people who are capable of self-direction, but it is being expanded to people with cognitive disabilities as well. In Maryland the PC-Option is large but it functions alongside another large program for older people that is more generous in services provided. In Texas the very large PC-Option is also flanked by a program for older people and a clutch of small gap filling programs. In Montana and Michigan the PC-Option is the major program in the state with few other programs to serve other groups. Oregon In Oregon, the PC-Option is an extremely small part of the PAS system. It provides very few hours of service a week to working age and older adults needing intermittent personal care using agency providers. In addition, disabled children in foster homes are just beginning to be served. The PC-Option is a relatively insignificant part of Oregon's overall thrust to keep people out of nursing homes and serve them either in the community or in congregate living which allows for more consumer control. The PC-Option program was moved out of the Senior and Disabled Services (SDS) Division into the Medical Assistance program in 1990. SDS Division oversees two large waivers, a 1915D waiver for older people and a 1915C waiver for younger people. SDS Division staff prefer waivers because they do not have an institutional income eligibility bias. (Oregon has opted to make the waivers have an income limit that is 300% of SSI, equal to that of the nursing home income limit, rather than the regular Medicaid income level of 100% of SSI.) Montana There are several programs providing PAS services in Montana. The Title III program is the largest in the state (between 3000-4000 people in FY1989) but it provides very few hours of PAS per recipient. The Personal Care Option Program served 1333 people in FY 1989. While it is not the largest program it provides significantly more hours of service. There is a waiver (617 people in FY 88-89) which mostly serves older people but has seven slots reserved for younger people who are significantly disabled. It provides more hours of services and a wider variety of services than the PC-Option and includes case management. There are long waiting lists to get in the waiver. Michigan In Michigan the PC-Option is the largest program in the state (27,558 people in FY1990). Michigan Department of Mental Health also uses the personal care option to serve people in adult foster care, group homes, and board and care facilities. In addition, there is a Title III program that serves older people with incomes higher than the Medicaid eligibility level. It provides homemaker, chore and home health aide service but for only a few hours a week per person. There are two waivers targeted at children: one for medically fragile children and one to deinstitutionalize children eligible for Intermediate Care Facilities for people with Mental Retardation (ICF-MRs). The Michigan Rehabilitation Commission runs a small project which enables working age people with high PAS needs to work and still receive financial subsidies for PAS from the state. This program has not grown in years. Michigan is committed to removing all people under 65 from nursing homes, and the PC- Option program is a key part of that effort. Massachusetts Massachusetts PC-Option program is very small (1175 people in FY1990) and was originally started to serve a particular niche, i.e. significantly physically disabled people with low incomes who can learn to be totally self-managing. Administered by six Independent Living Centers, the program also provides services to those who work through two programs, the Massachusetts Rehabilitation Commission Program (approximately 160 people in FY 1989) and the Common Health Extra Program (100 consumers in FY 1990). Under Common Health Extra, a state funded Medicaid Buy-In plan implemented in 1989, the working individual pays a low monthly premium, and the state provides all the services the individual would ordinarily receive under Medicaid if the individual were still income eligible for Medicaid, including PAS. The size of the premium also varies according to the number of benefits the individual requires. For example, people who have health insurance connected with their job which does not cover PAS or durable medical equipment or medical rehabilitation services can pay a smaller premium than those who need all these benefits plus regular medical and hospitalization coverage. The Massachusetts Rehabilitation Commission program, which charges on a sliding fee basis for PAS, has admitted no new people since the Common Health Extra Medicaid Buy-In was instituted. People with mental retardation and physical disabilities are beginning to be served under the PC-Option through other administering agencies as well as the ILCs, so the size of the PC-Option should change as the cognitively disabled population gets incorporated into this program through a surrogacy model. Older people in Massachusetts are served by the Area Agencies on Aging with a waiver for people needing personal care but with incomes above the Medicaid eligibility level for Massachusetts. Advocates maintain that there are still significant numbers of people with mental retardation in extremely costly institutions, and many older people in nursing homes because there are not enough community-based services. Maryland In Maryland there is a large program (3407 people in FY1989) that delivers primarily chore services through the state, on a sliding scale basis, to older people. This program provides more hours than the PC-Option program at a higher hourly attendant wage rate. It has a large waiting list because it is not an entitlement. As it targets more significantly disabled people, less significantly disabled people are being removed from the program. This program also has a higher income ceiling than the PC-Option. The PC-Option serves more people (5254 in FY 1989) who are more significantly disabled and poorer, and provides a narrower range of services with a very low rate of pay. The Department of Vocational Rehabilitation provides PAS for 37 people who are employed or employable. There are three small Medicaid waivers for older people, technology dependent children and cognitively disabled people leaving institutions (ICF-MRs). Texas Texas has a number of programs, though the PC-Option serves the most people. There are five state agencies that are involved in administering 20 PAS programs in the state. The PC-Option served 32,500 primarily older people in FY 1990. The Family Care Program, funded by state monies, serves those with a higher income level with fewer medical restrictions though at recipients are at a similar level of disability to the PC-Option population (23,000 people in FY 1989). There is a small state-funded voucher program providing recipients $300 per month for disability related expenses including PAS. There is a small client-managed attendant services program in five cities. There are 3 shared attendant sites funded by Title XX (TXX) and the state. The Texas Rehabilitation Commission administers a state-funded PAS program for employed people in some cities. The Department on Aging provides Title III funded homemaker services. Finally, Texas has three small waivers for people with developmental disabilities, for people with mental retardation, and for children using medical technology. Who Is Underserved or Unserved Given the multiplicity of programs, the question arises as to who falls through the cracks of this complex web of programs in each state. Site visit respondents had varying answers from state to state, but there were commonalities as well (Table 25). No state serves everyone who needs PAS. Massachusetts is the only state that has no disincentives to employment. Maryland is the only state allowing supervision as a PC-Option service for people with mental retardation or mental disabilities. And no state serves older people with incomes above poverty very well. They receive intermittent services through Title III programs if they exist at all. Table 25. Who Is Underserved or Unserved in the Each State PAS System State Who Are Unserved or Underserved Massachusetts Michigan Maryland Oregon Montana Texas *People with cognitive or psychiatric disabilities *People needing <10 hours/week of PC or <14 hours/week of homemaker plus personal care *Older people forced into nursing homes for lack of more community-based services *People needing 24 hour supervision *Couples, one of whom is able to provide PAS *People who are forced to use informal support from dysfunctional families *People with cognitive or psychiatric disabilities *People who need daily nursing care in addition to PAS *People who want to work *People needing more than 4 or 5 hours of PAS per day *People who want to work *People who don't meet strict income eligibility *People without informal supports and with high hour needs *Older people in retirement communities without services *Children who need 24 hour nursing *People who want to work but have high PAS costs *People <65 with cognitive or mental disabilities who need a lot of community services in addition to PAS *People needing more than 40 hours per week *People needing supervision in addition to their hours of PAS *People needing 24 hour nursing services *Working age disabled people *People who want to work *People who cannot be left even one day without assistance *Those who need more than 30 hours a week *People who need supervision rather than hands-on ADL assistance (-1 TRENDS IN STATE UTILIZATION As of 1988 there were 23 states that used the PC-Option to deliver services through 24 programs. New York has two different PC-Option funded programs. Between 1984 and 1988, one program (which served only people with vision disabilities) in Massachusetts ceased operating and five new programs were started, i.e. Alaska, Maine, North Carolina, Washington and West Virginia. This represents a net increase of four programs since 1984. Ti Other trends in state utilization can be described by the growth in the rate of participation, expenditures, recipients, and other service indicators between 1984 and 1988. Changes in the PC-Option programs can also be looked at in relation to the changes in programs funded by other funding streams and in the shifting of state PAS resources from funding stream to funding stream. Growth Rate of Participation The PC-Option programs varied in the growth of rate of participation, i.e. the rate of increase in the proportion of aged and disabled Medicaid recipients receiving PAS through the Medicaid PC-Option (Table 26). The states with a decrease in the number of PC-Option recipients per 1000 aged and disabled Medicaid recipients were Minnesota and South Dakota. All other states had a growth in participation. Nebraska, Missouri and Arkansas all had huge jumps in the number of Medicaid aged and disabled recipients being served by the PC-Option programs. As none of these states was included in our site-visit group, we are unable to explain why these changes occurred. Table 26. Growth Rate of Participation in the Personal Care Optional Benefit by State Rate of Participation 1984 Rate of Participation 1988 Growth Rate of (per 1000) (per 1000) Participation State Alaska na 17 na Arkansas 54 169 213.0% Maine na 6 na Maryland 20 46 130.0% Massachusetts 7 8 14.3% Michigan 104 132 26.9% Minnesota 137 24 -82.5% Missouri 39 177 353.9% Montana na 51 na Nebraska 7 43 514.3% Nevada 23 24 4.3% New Hampshire 2 4 100.0% New Jersey na na na New York 85 125 47.1% North Carolina na 28 na Oklahoma 92 159 72.8% Oregon** na 7 na South Dakota 304 215 -29.3% Texas 62 90 45.2% Utah 10 13 30% Washington na 55 na West Virginia na 129 na District of Columbia 65 na na MEAN 103% Source of Medicaid recipient data: Health Care Finance Administration Growth Rate of Expenditures. Recipients and Other Indicators In the aggregate, between 1984 and 1988, there was a 65% increase in numbers of recipients and a 144% increase in the expenditures for the PC-Option program (Table 27 below). The average number of recipients in each program grew by 37.5% during that period, and each program's expenditures grew by 102% on average. During this period there was a 47% increase in the average annual expenditures per recipient. Given that there was only a 14% increase in the Consumer Price Index between 1984 and 1988, the growth in expenditures per recipient must be explained by other factors. A part of the answer is that during the period of 1984-1988 there was an increase in provider wages in all categories (Table 12 above). Other reasons for the growth in expenditures may be increases in administrative costs, more intensive case management, and an increase in more significantly disabled recipients requiring more hours of service. Table 27. Aggregate and Average per PC-Option Program Growth Rate of Expenditures and Recipients Between 1984 and 1988 Recipients Expenditures Year Number of Estimated Average per Estimated Average per Average Programs Total Program Total Program Annual per (1000) (1000) (mils.) (mils.) Recipient 1984 20 160 8 $714 $35.72 $4,463 1988 24 264 11 $1,740 $72.51 $6,591 Growth Rate 20% 65% 37.5% 144% 103% 48% Source: Average per program data from Appendix D, Tables 1, 3 and 7. Data in this table are based on average per program means multiplied times the number of programs in each year. The growth rate in recipients per program varied, from a decrease of 85% in Minnesota to an increase of 232% in Nebraska (Table 28). Expenditure growth rates varied from -81 % in Utah to an increase of 491% in Montana and 397% in New Jersey. One suspects that the growth in the latter two programs was accompanied by a large increase in recipients, but that data was unavailable. Not all caseloads and expenditures varied in the same direction. In seven states (Arkansas, Maryland, Massachusetts, Michigan, Nebraska, Oklahoma, and Utah) the rate of growth of recipients outstripped the growth in expenditures. In some cases the difference was quite large, i.e. Oklahoma, Utah and Nebraska. Table 28. Growth Rate of Expenditures and Recipients of PC-Option Programs By State in 1984 and 1988 Recipients Expenditures (Total) Growth 1984 1988 Growth State 1984 1988 Rate ($1000) ($1000) Rate AK /a na 94 na na 250 na AR /b 5,205 16,539 218% 10,201 24,552 141% ME /a na 241 na na 396 na MD 1,468 4,000 172% 4,000 7,600 90% MA 500 defunct na na MA 584 1518 74% 5,655 12,850 127% MI /b 22,000 33,000 50% 63,000 81,000 29% MN 11,951 1,787 -85% 5,292 8,904 68% MO/b,c 4,448 22,000 167% 9,191 26,114 184% MT na 736 na 400 2,362 491% NE 155 515 232% 750 1,428 90% NV 243 300 23% 510 1,020 100% NH 33 55 67% 304 891 193% NJ na na na 1,502 7,460 397% NY /b 4283 10,197 138% 24,904 94,000 277% NY 52,400 79,198 51% 458,200 1,179,830 157% NC /a na 3,765 na na 12,905 na OK 7643 14,028 84% 34,400 35,000 2% OR/b,d na 300 na na 18,976 na SD 4000 3,282 -18% 1,834 2,690 47% TX 14399 31,266 117% 46,424 108,983 135% UT/b,e 141 200 42% 939 183 -81% WA /a na 5,864 na na 34,000 na WV /a na 7,500 na na 4,000 na DC 900 na na 3,600 na na TOTAL 130,353 211,321 80% 671,106 1,665,394 144% a-e: defined nex page There was a large growth rate in total hours of PAS delivered by the PC-Option programs, and a large increase in average hours of service delivered per program (Table 29). These increases are greater than the growth rate in recipients, suggesting that more significantly disabled people are receiving services. Table 29. Total and Average Per Program Growth in Hours Year Number of Programs Estimated Average per Program Total (millions)* (millions) ** 1984 20 142.4 7.12 1988 24 337.7 14.07 Growth Rate 20% 137% 107% * Source: Appendix D, Table 5 ** Computed by multiplying number of programs by the average per program houts because data were not available for all programs. Change in Service Availability and Service Limits Eighteen percent of the PC-Option programs have stopped making services available whenever they are needed during the day or the week (Appendix D, Table 11). There has been an average decrease of one hour per week per recipient in the maximum hours programs allow. And there has been an average decrease of $300 per year in the maximum allowance per recipient. All of these figures indicate a general trend toward limiting service to recipients over the period from 1984 to 1988, a period of fiscal crisis in the states. Yet even with these restrictions, there has still been an overall increase in hours of service delivered and program expenditures per recipient, as noted above. /a: Programs started after 1984. /b: Mixed PC-Option programs, i.e. ones that are combined with other funding streams and in which the two could not be separated. /c: The Missouri PC-Option program was combined with other programs between 1984 and 1988 /d: In 1984 in Oregon, the data we have could not distinguish between the PC-Option and Waiver Programs and treated them as a single program. In 1988 these could be split and were treated as separate. /e: Utah went from a mixed (Title XX and TXIX-PC-Option) to only PC-Option between 1984 and 1988. All TXX recipients were put into a separate program which accounts for the large decline. Comparison of Growth Rate Across Funding Sources Between 1984 and 1988, programs with different sources of funding grew at different rates. Programs funded by Medicaid waivers on the average exhibited more growth in the period between 1984 to 1988 than any other funding source (Table 30). The PC-Option programs showed high average growth in expenditures but less average growth in numbers of recipients. Title XX/Social Service Block Grant (SSBG) Programs had high average growth in numbers of recipients, expenditures and expenditures per recipient, but experienced only a small average growth in hours delivered per program. Programs funded solely by state revenues declined on the average in terms of recipients, hours and expenditures, suggesting that states are cutting programs that have mostly state funds. Title III programs also showed a decline. Table 30 Changes on Key Variables Between 1984 and 1988: Average Growth Rates Per PAS Program by Funding Source Group FUNDING SOURCE Indicator TXIX PCTXIX WAIVER SSBG TIII STATE OPTION Average Annual 102% 312% 96% -14% -45% PAS Program Expenditures Average PAS 39% 202% 302% -14% -56% Caseloads Average Total Hours of 107% 379% 8% 1% -14% PAS Provided Average Program 1% 50% 81% -52% 19% Expenditures Per Recipient Mean Change in -1.0 hours -.7 hours 0 Maximum Hours/ Recipient/Week Allowed Mean Change in $300 $1,900 $200 $1,000 Maximum Expenditures/Year/ Recipient Allowed Shifting of Resources Among Different Funding Sources Between 1984 and 1988 eleven programs appeared to have shifted funding sources. Two of these had actually consolidated with other programs which had different funding sources. Two state funded programs began to use Medicaid waiver funds, and another had begun to use the PC-Option. The remaining five programs shifted between the Title XX, Title III, State and Other groups. Because data was collected covering only two points in time, it is difficult to describe overall trends in shifting among the funding sources. But more specific information gathered during the site visits illuminates this issue. Until the recent downturn in Massachusetts' economy, the state did not pursue Federal matching monies to any great extent. That is changing, however, as advocates realize the potential of accessing Medicaid PC-Option money for serving people with physical disabilities and mental retardation and as the aging constituency presses for more use of the Medicaid waiver. In Oregon the state provided some in-home services through the Area Agencies on Aging, but this was inadequate to meet the need. It pursued Medicaid funding, first in the form of the PC-Option and later in the form of Waivers, as a way of reducing its Medicaid expenditures on nursing homes. Currently it is using the PC-Option to augment state expenditures on foster care for disabled children, again as an alternative to institutionalization. Four site visit programs grew out of Title XX programs at the time that Congress capped the program and turned it into a block grant. Montana deliberately switched the program to Medicaid in 1977 when Title XX was capped, in order to access Federal matching funds for the personal care that it was already providing. The switch was not effective in leveraging federal dollars until Montana contracted with a statewide provider agency to deliver services. Montana has also developed a Medicaid waiver to further leverage federal dollars serving people who are more significantly disabled. The Maryland PC-Option program grew out of a Title XX program targeted at people who were the least disabled and who had friends and neighbors who could be paid a small amount to look in on them. There has been much pressure on the program to create higher levels of pay in order to serve more significantly disabled individuals. Rather than expand the PC-Option, the state prefers to use the waivers to target very specific populations, e.g. technology dependent children, institutionalized people with mental retardation. Texas also shifted its Title XX program into Medicaid when Title XX funds ceased to expand, in order to gain the Federal match. In the future, the state administration is looking to the waivers and to section 1929 of the SSA to fill in gaps. They see this as a way to target populations without having to create entitlement programs which cannot limit the populations served. Michigan's program also started as a Title XX program which was switched to Medicaid in 1980. In summation, it appears that many states have decided that the only way to leverage Federal funds for PAS service growth is through Medicaid. States see the Medicaid waivers as a way to expand service for small groups and the PC-Option as a major federal funding source for larger programs. DISCUSSION The Changing Role of the Medicaid Personal Care Option The Medicaid personal care (PC) option has been a major source of public funding for home and community-based long-term services. Moreover, it is currently experiencing significant growth at both a national and state level. Since WID's first survey of personal assistance service (PAS) programs in 1984, at least seven new states added the PC-Option to their Medicaid plans, and other state administrators and legislators throughout the country are closely examining this funding source. Between 1984 and 1988 the number of recipients grew 65% and expenditures grew 144%. This growth is due in part to the pervasive fiscal shortfalls in many states. In an era of shrinking state revenues, many states view the PC-Option as one of the few vehicles left for leveraging federal dollars to expand PAS. Medicaid Waivers, despite their proliferation, have failed to bring PAS to most of the people who need it, as the waivers tend to be relatively small and targeted to special populations (i.e. federal figures indicate that two-thirds of waiver spending goes toward services for people with developmental disabilities). In many states the number of people served through purely state or Social Service Block Grant funded programs have declined because of new fiscal restraints. The Personal Care Option has therefore become the mainstay of many states' home and community-based services systems. The same fiscal climate which has contributed to greater utilization of the Personal Care Option has created pressure to contain PAS program costs. Despite the federal match, Medicaid services are increasingly viewed as "budget busters" because of their entitlement status, and are coming under legislative and executive scrutiny. States vary dramatically in the degree to which they limit access to services, but all programs are caught between the growing demand for services and the need to contain costs. The growth in caseloads and expenditures can also be attributed to expanding and diverse populations seeking services, i.e. children and adults (under and over age 65) with a variety of physical, cognitive, and psychiatric disabilities. One of the major questions raised by this study is whether -- or to what extent and by what means -- it is possible to accommodate the sometimes disparate needs of different populations in a single program. Traditionally, "long-term care", whether provided in nursing homes or in home and community-based settings, has been primarily associated with the needs of persons over 65 who develop age-related functional disabilities as the result of chronic medical conditions, including Alzheimer's disease and other dementias. The Medicaid personal care option was originally modeled on an Oklahoma program that sought to augment the in-home services available to the disabled elderly by paying small stipends to individuals -- primarily friends and neighbors -- recruited by the care recipient or his or her family to supplement informal supports. Although the Oklahoma prototype and most subsequent PC-Option programs serve older people with disabilities, programs have evolved in many states which serve a sizable number of younger people. Massachusetts in particular serves predominantly a working-age population. Oregon's PC-Option is unique in targeting only disabled children. Michigan, Montana and Maryland serve people with cognitive disabilities, and Maryland also serves some people with psychiatric disabilities. Most programs limit service to people with physical disabilities, although this is changing as more people move from institutions into the community. The growth in the number and types of people seeking home and community-based long-term services has been accompanied by growing political and economic scrutiny of existing service delivery systems. Disability rights advocates are increasingly demanding a service delivery system which facilitates independence and empowerment by maximizing consumer involvement in all aspects of PAS. They argue that consumers are the best qualified to assess how much service they need, what kinds of services they need, and when, where, and how these services should be delivered. They therefore prefer independent providers who are hired, supervised, and paid directly or indirectly by the consumer or his/her chosen surrogate. Until recently, advocates for seniors focused on expanding professional accountability and government regulations for Medicaid and Medicare services to ensure "quality" (which is largely defined as a lack of negative outcomes such as abuse and neglect), but recent research and advocacy efforts indicate that older people with disabilities are also concerned with autonomy issues. The type of system promoted by disability rights advocates is seen as a challenge to the traditional "medical model" of service delivery. This model defines personal assistance as a medical or medically-related need and puts medical and social service professionals (physician, nurses, and/or medical social workers) in charge of allocating and monitoring a limited range of services, usually provided via private or non-profit homecare or home heath agencies. Advocates for seniors have also voiced criticisms of the medical model, although on somewhat different grounds. Typically, they are concerned by the fragmentation of the financing and delivery system that results when coverage of "non-medical" services is prohibited under medical insurance programs such as Medicare or Medicaid. For example, in the early 1980's HCFA sought to take disallowances against New York's PC-Option program for providing homemaker/chore assistance to some elderly persons determined to need help because they lived alone but who did not require "hands on" personal care. An administrative law judge ruled, however, that the regulatory definition of "personal care" was sufficiently ambiguous to support New York's interpretation. Proposed HCFA regulations published in 1987 would have prohibited such coverage, on the grounds that such individuals' need for home attendant services is purely "social" rather than "medical". The same regulations would also have strictly limited (to one-third of the total time) the level of amount of time that personal care attendants under the PC-Option could be put into performance of homemaker/chore services. The proposed regulations elicited considerable negative commentary from state agencies as well as advocacy groups, and were never promulgated. Compared with other Medicaid services, the PC-Option is relatively unconstrained by federal regulatory requirements or prohibitions and, therefore, open to definition by each state that elects to include coverage of personal care in its state plan. In this study, the data analyses suggest and the site visits confirm the extraordinary variability among states which use the PC-Option. Federal regulations specify only that personal care services in the home must be 1) prescribed by a physician, 2) supervised by a registered nurse, and 3) provided by a "qualified" individuals who are not members of the recipient's family. States have tended to interpret these requirements according to their own predilections. Moreover, states that consider themselves hamstrung by federal regulations may appeal to Congress to enact legislative relief. Minnesota did so successfully in 1990. When the phrase "in the home" was interpreted by HCFA as meaning limited to the home, state officials asked a Senator to get Medicaid law rewritten to permit the provision of services outside the recipient's home. In establishing a statutory basis for the personal care optional benefit, OBRA 1990 specified that Minnesota could immediately begin covering personal care provided outside the home and that all states would be permitted to do so as of 1994. Will the states be able to use the PC-Option to meet the needs of the diverse and increasingly vocal population demanding services, while trying address their own managerial concerns such as liability, income tax withholding, and worker's compensation? Does it make more sense to administer a multitude of programs with different administrations, eligibility requirements, and types of service delivery to serve the needs of different groups, or can a single program be developed which is flexible enough to respond to the needs and preferences of a heterogenous consumer population? The following sections outline some of the problems in the organization of PC-Option programs that need to be addressed in order to better serve people who need personal assistance services. Current Limitations of PC-Option Programs 1. The number of hours of service available may not meet the needs of the significantly disabled population. A variety of service limits restrict program utilization for people with more significant functional limitations or specific service needs. Limits in the type and amount of services may preclude potential consumers from seeking program services, even if they are technically eligible. If existing PAS programs do not meet their needs, such individuals may have to be served in costly and restrictive institutions. The most common reason cited for service caps is cost containment. However, institutional placement or development of separate programs for people with high service needs is unlikely to save state revenues. While acknowledging the need for management of program expenditures, states should consider allowing the relatively small number of people who require up to 24 hours of PAS per day to receive this level of service. Unless service allocations reflect the actual need of the consumers, programs may be "penny wise but pound foolish". 2. The scope of services available may not meet the needs of the populations served. Particularly problematic for many consumers is the lack of supervision, emergency services, and paramedical services. PC-Option programs tend to offer a core of basic personal and household tasks (e.g. feeding, bathing, dressing, ambulation, transfers, oral hygiene and grooming, skin maintenance, light housekeeping, laundry, meal preparation and cleanup). Other tasks (e.g. emergency services, supervision, paramedical services, non-medical escort and transportation, assistance with childcare, heavy cleaning and maintenance) are often not considered appropriate personal assistance services, even though people may need such services to live independently. a. Emergency services Many programs do not offer emergency services, due in large part to the logistical staffing problems involved. Some programs which contract with provider agencies are able to offer such services, because agencies can designate one or more employees as emergency attendants. Programs which utilize independent contractors have more difficulty effectively providing emergency services, but may allow for emergency hiring of contract agency providers or maintain lists of available independent providers. The efficacy of different systems of emergency service provision merits further examination. b. Supervision services Support services for people with cognitive and psychiatric disabilities are rarely provided. However, states should consider expanding the definition of personal care to include people who need supervision (rather than hands-on assistance) in order to perform personal care and household tasks. Currently PAS is provided to people with psychiatric disabilities under the PC-Option in Maryland, and this appears to be an effective way to reduce costly hospitalization. c. Paramedical services The provision of paramedical services or "invasive procedures" (e.g. assistance with medications, injections, catheters or ventilators) is particularly problematic for PAS programs in general. There has been a slight decline in programs offering paramedical services, because nurses' aides and home health aides are too expensive to provide paramedical services on a daily basis, and attendants are not allowed to provide these services due to legal restrictions set by state Nurse Practice Acts (Sabatino, 1990). Nurse Practice Acts usually prohibit non-licensed individuals other than family members from doing invasive procedures. State administrators often cite these laws, and concern over liability for negligence, as reasons for not providing paramedical services through their PAS programs, but people who need such service on a daily basis may not be able to live in the community because of such restrictions. A few states have worked directly with state nursing boards, consumers, advocates, providers, and state officials to modify the Nurse Practice Act or related regulations. In Oregon, for example, regulations were promulgated which allow nurses to delegate paramedical tasks to attendants after specific training for those tasks. Massachusetts explicitly allows the consumer to train an attendant to provide paramedical services. Several programs tacitly acknowledge that program recipients may receive services technically excluded by state statute, but these programs do not attempt to enforce such service restrictions. Administrators of these programs say that the actual risk of successful negligence lawsuits is relatively low, and the state has simply decided to assume the liability risk. However, a more systematic resolution of this issue is required for all states to address the paramedical needs of consumers. Collaboration with state and nursing boards and national professional groups is clearly the first step in such a resolution. 3. Limits on the times services are provided and the locations in which services are provided often impede participation in the family, community, and workplace. Restrictions on the times and locations in which services are provided limit the independence of consumers. Provision of personal assistance services is usually restricted to the home. Transportation and escort services, if available at all, are usually limited to medically related trips. People without other informal supports may become essentially confined to their homes because of such restrictions. Recent changes made in the Omnibus Budget Reconciliation Act of 1990 will allow service provision outside the home, but states should be encouraged to adopt these changes immediately. 4. Income eligibility requirements limit service access, and discourage marriage and employment for consumers. Although Medicaid by definition is directed to low-income Americans, eligibility requirements can be modified to help a greater number of people with disabilities to access essential services, and allow people who are receiving these services to become employed and establish long-term relationships. Some states have developed programs with state funds to overcome income restrictions inherent in Medicaid funding, but fiscal shortfalls are prompting many of these programs to be capped or cut, and efforts are being made to move people receiving services onto state Medicaid rolls. To facilitate this, all states should be encouraged to institute "spend-down" programs to Medicaid income eligibility, and allow disability related expenses (including PAS) to be included in the spend-down formula. Federal legislation could also be considered which would allow states to use the Medicaid waiver and nursing home standard of up to 300% of SSI to determine eligibility. Income eligibility for PC-Option services would then be comparable to that of Medicaid subsidized institutional placement. Many programs assess spousal income when determining eligibility, which may cause recipients who marry to become ineligible for benefits. In some programs, non-disabled spouses are required to provide unpaid PAS. In a few programs, consumers living with non- disabled spouses or family are deemed ineligible for any services. These types of regulations place an extraordinary burden on family systems, and constitute a form of discrimination against PAS consumers. Eligibility requirements should be modified to assess only individual income, and consumers should be allowed to live with non-disabled family members while receiving services. Income restrictions often act as de facto work disincentives for PAS recipients. Because they would lose benefits and be forced to purchase PAS privately, many consumers simply cannot afford to become employed. The implementation of section 1619 of the Social Security Act has allowed SSI recipients who start working to maintain publicly funded benefits (including PAS) until their earnings exceed the value of these benefits, but at this point awareness and utilization of section 1619 is quite limited. Rehabilitation agency personnel and other service professionals will need training and support to see that this regulation is effectively utilized, and modifications will need to be made to the regulations themselves, notably increasing asset limits. Additional expenditures for provision of PAS to people who work will probably be offset by the tax revenues generated by these individuals. 5. Family providers are not included in the repertoire of possible provider arrangements, despite the potential cost savings and desires of some consumers. The PC-Option precludes family providers, but there is much variability in how "family" has been defined. Although this regulation was intended to contain program costs by avoiding payment of volunteer providers, there are some situations in which paid family providers are cost-effective and preferable to the consumer. In some geographical areas, there may be no one else available and willing to provide needed services. In other cases, language may be a barrier and family members may be the only people available and capable of providing the type of service required. Some consumers will choose to have their PAS provided by a family member. However, in many cases, because reimbursement is not available or attendant reimbursement rates are too low, consumers are forced to rely on family members. Family providers should not be a cost control mechanism, but should be an available option. 6. Utilization of independent providers is limited, despite the lower per unit cost and greater consumer control, because of liability concerns and withholding issues. Independent providers (IPs) are an essential part of any PAS delivery system. Because IPs are hired and managed primarily or exclusively by the consumer, they are generally more responsive and accountable to the consumer. They tend to have a lower per unit cost than agency or government providers, although some analysts have argued that the cost savings are achieved in part by elimination of administrative support, and transfer of management responsibilities to the unpaid and usually untrained consumers. The lower cost and the potential for greater consumer control make IPs particularly suitable for people with high service needs. Despite cost savings and the preferences of many consumers, some states have stopped using independent providers. Others are face considerable difficulties in maintaining their commitment to using them. The main problem for the states which use IPs involves responsibility for employee benefits and withholding of federal and state taxes. Independent providers may be considered self-employed, employed by the disabled recipient or employed by the state for purposes of some types of tax and benefit withholding. Convoluted strategies are being used to avoid dealing with withholding in order to avoid being deemed the employer of IPs. Income and social security tax is often not paid on attendant earnings, and there is often no clear designation of responsibilities regarding unemployment and worker's compensation. The IRS and state labor boards are questioning the validity of these employer relationships, and some states have responded by shifting to agency providers to avoid the risk of being designated as legally responsible for benefits and withholding. Another commonly cited impediment to use of IPs is concern over liability for attendant negligence. Even though few states have actually experienced any litigation, many state administrators say that liability concerns have impacted the design of their systems. Because of the clear advantages of the IP mode, organizational and legal solutions to the problems in employing IPs need to be developed. A dialogue with the IRS should be established to explore ways to address tax withholding. The American Bar Association or state affiliate could be contacted to assess the actual frequency of liability cases and recommend ways in which states can resolve the liability issues. Perhaps attendant associations could be established to provide group attendant liability insurance. Such an association could also be the basis for other group benefits. Service recipients could also apply for individual worker's compensation, and the cost of the insurance could be included in the recipients' financial allotment. It is also important to look at ways consumers can be assisted to use the IP mode, i.e. support services, emergency services, and consumer training in attendant management. 7. Consumers do not have a choice among provider modes. Researchers, administrators and advocates agree that a single provider type will not be able to meet the needs of all people who need PAS. However, most programs use only one type of provider, and those which use more than one usually base the decision on administrative factors (county and state regulations, geographic location of consumer, cost guidelines) rather than consumer choice. There are advantages and disadvantages associated with each provider mode. The lower cost and the potential for greater consumer control make IPs an attractive choice for many consumers, but effective use of this provider mode requires management skills on the part of the consumer, as well as emergency and support services (attendant registries, assistance with screening, hiring and firing of attendants). Family providers may also be a cost effective choice for consumers with informal support systems. Agency providers may be useful in situations where individuals need fewer hours of assistance, because agencies can coordinate a relatively small number of staff to provide this level of service to a large number of people. For people who cannot or choose not to hire and manage their attendants, agency providers may be preferable. Government providers may offer a more stable workforce. The administrative challenge is to design a program with sufficient flexibility that most or all of these provider modes are options available to the consumer. While acknowledging that the administration of such programs would be complicated and possibly costly, many states might reduce overall costs by bringing a multiplicity of different programs for different populations under a single administrative structure. 8. Assessment of service quality is based on broad administrative standards instead of consumer experience There is an ongoing debate among policy makers and program administrators on how to define and assess service quality. In the absence of any standards of quality, many states have developed minimum compliance standards assessed by state evaluation teams, often composed of medical professionals. Such standards are usually developed without consumer input, and therefore reflect administrative concerns rather than the actual experience of service recipients. Quality in such programs is defined as low incidence of negative outcomes (e.g. reported cases of negligence), and compliance with regulations. Such measures may bear little or no relation to actual experiences of consumers. Some states have tried to address this problem by involving consumers in the process of quality monitoring. A few provide training to the recipient or his/her family in order to recognize quality services. Peer training in Massachusetts appears to increase both service quality and consumer satisfaction. Others provide ombudsmen, consumer hotlines, conflict resolution, and appeal procedures. Several states have established advisory boards which include consumers, but these boards often have little power to impact program policy, and board members are not compensated or reimbursed for transportation, PAS, or disability related expenses. A genuine commitment to the participation of consumers, advocates, family members, and providers will need to include administrative and financial recognition of the contributions of program advisors. In all states, a primary impediment to quality is the lack of an adequate pool of available attendants. Low pay and benefits lead to constant turnover among attendants. Many consumers must endure a poor quality of service because the alternative is no service at all. A recognition of the value of PAS as an alternative to isolation, dependence, and institutionalization will necessarily require financial recognition of the demanding job performed by the PAS provider. If a responsive, high quality system of home and community-based services is established, the savings in terms of reduced institutional placements, lower utilization of medical professionals, and increased productivity among consumers should offset the cost of maintaining an adequately paid attendant workforce. If policy makers are going to make informed decisions about expanding services, improving quality, and containing costs, they will require good information about PAS programs. Without such information, programs are often developed and modified in response to short-term political pressures rather than long-term needs of the consumers. This current research project was also complicated by inconsistencies and inadequacies in the data reported by each of the states. Programs should be required to document basic fiscal and demographic data in a uniform manner. Conclusions Across the U.S. there is extraordinary variability in the number of people receiving necessary services. Some states make a concerted effort to provide personal assistance services to many of those who need it, while others provide very little. Some sort of federal action would probably be required in order to address these disparities. A number of different proposals for federal action are currently being discussed. One strategy is to make personal care a mandatory Medicaid service. This is in fact on the verge of occurring, but in a way that has given rise to many ambiguities. In OBRA 1990, statutory language (apparently intended to accommodate Minnesota's desire to provide personal care outside the home) refers to personal care (including the regulatory requirements, now revised to explicitly permit provision of services outside the home) as a part of the definition of "home health services". This took effect immediately for Minnesota, and will be implemented nationally in 1994. Because home health is a required service, insofar as all states must make home health coverage available to Medicaid eligibles who qualify for nursing facility care, this statute appears to make personal care mandatory. It is unlikely that this was the intent of the legislators who drafted the legislation: How the OBRA 1990 legislation is interpreted could have a profound impact on states currently utilizing the PC-Option, as well as those that do not. Some state administrators of PC-Option programs are concerned that the linkage between personal care and home health could mean that PAS providers must be certified home health agencies. However Minnesota, which is currently bound by the OBRA 1990 statute, has not established any linkage between its home health and personal care programs (in terms of eligibility, services provided, service limits, etc.) and continues to use independent providers. A different approach to increasing Medicaid recipients' access to PAS is to shift a percentage of the current Medicaid expenditures from institutional services to home and community-based services. According to Reilly et. al. (1990) 40.7% of all Medicaid payments were for services to long-term care facilities (including ICF-MRs as well as nursing homes) in 1989. The national advocacy group ADAPT (American Disabled for Attendant Programs Today) is probably the most vocal proponent of this strategy, demanding that 25% of current federal nursing home expenditures be redirected to PAS. States can now reallocate long-term service expenditures through the 1915(D) home and community-based waiver. This gives states the option to interchange funding for nursing home and home and community-based services for aged and disabled Medicaid recipients in return for states' acceptance of capped federal matching funds for all such care provided. The 1915(D) waiver provision provides for annual increases in the funding cap to be indexed according to inflation and elderly population growth. To date, only Oregon (which was responsible for getting the 1915(D) waiver authority enacted into law) has elected this option. Another alternative which would require new legislation is to consolidate all Federal PAS programs (i.e. Waiver, PC-Option, Title III PAS, and currently expended Social Service Block Grant monies) into a block grant program to states which is indexed to some measure of annual growth and does not require state matching funds. This grant would need to be accompanied by additional federal funding, based on estimates of the gap between what is needed to serve the target population (defined by ADL deficits and income) and what is currently being spent. It could help eliminate the differences in administration and eligibility determination among state programs, without creating a new open-ended federal entitlement with unpredictable costs. However, although the states would initially benefit from this infusion of funds and lack of federal requirements for matching state revenues, they could find that meeting growing demand for services will require greater and greater infusions of state monies if indexing failed to provide enough funding to keep pace with demand. All of these proposals have drawbacks, but some sort of resolution of the access issue is imperative. As political, economic, and demographic pressures build, federal and state government will need to initiate a formal process of dialogue between administrators, legislators, providers, advocates and consumers. PAS is essential to a growing number of Americans, and a way must be found to provide these services. REFERENCES Health Care Finance Administration (April 4, 1979). Medical assistance manual. HCFA-AT 79-33. 5-14-00, 1-11. Washington DC: HCFA. HCFA (June 27, 1988). Proposed rules. Federal Register, 53 (123), 24103-24106. 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