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Preliminary Report Based on Report-Backs from Sunday's Breakout Sessions


Reported by Tony Young

We've got quite an ambitious plan, divided into four different areas we need to work on. At the Federal and State level, there's legislation to enact, oppose, or guard against.

Our long-term goal is to enact Title XXII (22) of the Social Security Act, bringing about a comprehensive universal entitlement to long-termsupport services, cross-disability, for all ages, functional as well as developmental disabilities. We don't need labels; instead we should be stressing commonalities.

  1. Federal Legislation to enact
    • Micassa.
    • The Worker Incentives Improvement Act is on the verge of passing; we think we can do it soon. Our goal is to get MICASSA through in the next 60 days, and getting that passed would help us build on the momentum from the recent Olmstead (LC) court case.The 300% PCO (personal care option) will help in the push for accessible/affordable housing.
    • We need to make sure funding is going into research.
    • We need to change to a more comprehensive plan, change the standard of affordability for ICF [Intermediate Care Facilities]
    • We need to put people with disabilities on the social-workers screening team for services.
    • The most controversial item will be to change the DD Act to the D act.
    • This means changing a law that is now targeted to a narrower disability group, people with developmental disabilities, and making the same kind of services and entitlements available to people with all kinds of disabilities. It stands for the Disability Act.] and remove age requirements. We can use this structure for a comprehensive PAS program.
  2. Federal Legislation to guard against or prevent
    • Massive tax cuts
    • Involuntary outpatient treatment - this amounts to forcing drugs on people
    • Assisted suicide legislation - we need to stop it.
    • Medicaid block grants
  3. State legislation to enact
    • Improved wage/benefits for personal assistants
    • Training for personal assistants, and for people with disabilities on how to hire PAs.
    • State backing for MediCaid, balanced budget, worker incentive act improvements.
    • Olmstead options - money to go with the reforms
    • Changing DD to D
    • Housing availability
  4. State legislation to guard against
    • Involuntary outpatient care
    • Assisted suicide
    • State tax cuts

Members of NCIL, ADAPT, and the consortium will be involved in the Work Incentive Improvement Act. We need to develop a strategy for joint deliberation inside and outside the beltway.


Lee Page, PBA reported

Our task was to come up with a strategy for media relations. We didn't know what that meant coming into the room, and some still don't know coming out.

We need to take global views, and a global strategy. Mark said 'make sure you address Olmstead'; Judy said 'make sure you address baby boomers'. We need to have a message and avenues to deliver that message. Through print, radio, TV and general conversations with people.

Our audience is:

  • politicians
  • the general public
  • potential users of PAS
  • baby boomers
  • minority groups with cultural differences
  • caregivers

The subject matter is:

  • PAS
  • long-term care
  • home and community-based services

In our [breakout] room: half of us didn't like the definitions for PAS.

There are four delivery systems involved: Political, financial, civil rights, and quality of life. For us to have those services we need:

  • choice
  • control
  • self-determination
  • independence
  • options
  • quality

That's the power we have in those areas.

We boiled it all down to one line:

Where do you want to be?

It's visual, and lends itself to many answers, including:

  • I want to be in control
  • I want to be at home
  • I want to have PAS

You can use it repeated with info for effect:

Where do you want to be?
Medicaid spends 80% of its money on nursing homes.
Where do you want to be?

It frames it as an issue of civil rights and quality of life. For example: someone middle-income who experiences a catastrophic injury and has to spend down to get on Medicaid, the effect it has on their family.

Civil Rights is a grassroots issue.

The weakest link is financial. We had an hour and a half to think of this. We're not a PR firm spending six months and $8 million. We came up with soundbites.

Who will be involved after today? We'll ad-hoc from something here. See Mary Johnson or Cindy. The listserv launches tomorrow - based on our meeting in May on disability and media.

Someone asked: With presidential candidates, can we get them literature to develop our agenda for our vision of the future? Share that?

Everyone should send in personal stories that we can put on the website for the Long-Term Care Campaign. Every story that talks about why 'I need PAS' or can't afford it or have to spend down and devastate a family is additional ammo you can e-mail, fax, and do whatever.

The more noise they hear, the more potential they have to do something. Get them to sign that pledge to develop more home and community based services, more PAS. Have signs "sign the pledge" at rallies.

The thing to do is to get the commitment, get them elected, and then tell their managers what they agreed to do.

Q: Who is the group that's going to articulate that specific vision? People develop platforms and position papers. To allow it to be generic would be a mistake. What needs to be amended, passed, or enforced so we can better serve ourselves? We need a more-focussed group.
A: There are two different things. The platform is detailed. We need a position paper for candidates.


Reported by Tom Bleeker, WID

The Litigation group mainly looked at post-Olmstead(LC) activities. It took us a long time to focus on a subject so vast

Olmstead says that there's a need for every state to have a comprehensive plan. It's in the best interest of the group NOT to wait for HCFA [Health Care Finance Administration ].

The activity among states to convince State Attorneys General to pull their state off the amicus brief [in Olmstead] was most impressive - it showed the value of having a deadline. We decided we needed to establish a deadline for compliance to prompt action by the states.

By July 26, 2000 (the 10th anniversary of ADA's passage), states must have a plan in place or lawsuits will be filed.

The elements of each state plan are not for us to figure out; it needs to occur at the state level.

We defined our task as figuring out who the key players are to activate each state. Within each group we can come to consensus on program elements.

Right now we have broad outlines but need specifics. What are the number of people who want to move out of institutions? Housing development is needed.

People here need to go back to their states, identify who the key players are, and convene them in one way, shape, form or another.

You should have your first meeting by September 1, 1999.

Who are the key players? Identify the best practices

  • Independent Living Councils including Independent Living Centers
  • DD Councils
  • Protection/advocacy agencies
  • Self-advocacy groups
  • CMHC consumer groups
  • Nursing Home family and resident councils
  • Nursing Home volunteers
  • Volunteer legal associations
  • Ombudspersons

After the meeting, you should make contact with your state MediCaid folks by October 1, 1999, as their Federal dollars arrive. "As you cash your check..."

Groups within states should be able to communicate across the nation.

ILRU and WID will construct a mega-website specifically designated to deal with LC & Olmstead issues. It will include different elements that can go into a state plan. People with web access need to be willing to produce and distribute to members without access in their groups alternative suggested by Tony Young of the consortium: help get them onto the web!

State coalitions can forward information about best state practices back to a national coordinating body.

The national association of protection and advocacy services can put together from a more global perspective that will include several of the key elements of a state plan.

Ric Berger commented: We are on the verge right now here with what we've got coming back from the groups - a clear strategy goal. Now we need to make sure we are going home with a real action plan. Our tactics will form as we move along. We've done some really good things here, people. I want to see that momentum continue when we leave here. I want to see us all taking back home what we put up on the wall here.

The website will be for people not here at the conference to see what we did and for us to keep working.


Reported by Marilyn Saviola, Director of Advocacy for Independent Care Systems.

We looked at Federal regulatory reform and state programs.

What we want: Mandatory PAS for everyone who needs it.

In a continuum of opportunities to match the needs for a particular individual.

It should be there for everybody who needs PAS - no matter what your disability is. No matter whether you're insured privately, through employers, or not insured but can't afford it. There should not be eligibility limits.

Disability groups - people with development disabilities, cognitive disabilities, mental health issues - also have problems getting PAS. Who do we want to talk to / get involved?

We want the Federal government to say that PAS is a mandated service - not optional that a state can choose not to offer.

A coalition of interested groups:

  • advocates
  • consumers
  • parents
  • [PAS] workers
  • unions
  • guilds
  • the disabled / chronically ill / being discharged
  • educators
  • payers [government officials] who work to administer PAS

We need to be proactive rather than reactive.

Every state needs to have a working mechanism within it.

Coalitions must also include representation from caregivers, legal services people

Where? At all government levels. Plus tribal governments.

When? Now.

Why? The next election is coming up.

Any candidate, to appeal to the disabilities and worker communities needs to support our agenda.

We need to pass MICASSA. It will help to Provide a federal structure within which the states can implement the LC decision.

Our coalition feels energized. Its very important to keep this sense going. It triggers national coordination / oversight for information dissemination. We can build on this meeting and the contacts we've made.

There should be some kind of council, coalition, or whatever in each state. and some kind of coordinating committee that comes out of or as a followup to this meeting.

Through the web, people who will be reactive can communicate.

We can exchange info: from Oregon to Idaho, etc.

The task is one of education.

There's a huge job facing managed care organizations - how will it work? HCFA should have regulations in place. Any managed-care organization, particularly long-term care, has to have mandated PAS. They must provide a choice.

We need collection of data. What about Quality Assurance are people with disabilities getting what they need? Are people satisfied with the level of care?

We need to see more money for PAS on the federal level. If a program is mandated, states need extra funding.

We need to develop training.

  • for consumers
    on how to be a consumer of self-directed PAS. How do they train, hire, fire, replace workers; what are their choices?
  • for personal care workers:
    they may need to know what consumer-directed care is... they've had mostly agencies, caseworker experience.

People with different disabilities (psychiatric, AIDS) should be involved in developing training.

Audience suggestion: One obvious area for training and coalition-building are University Affiliated Programs (UAPs). They're mandated to have a consumer-advocacy program.

The American Association of University Affiliated Programs has a consumer council that's very active.

There are opportunities for building coalitions here.


facilitated by Mark Sciegaj from Brandeis University

The issues we looked at are:

  • What are the logical next steps to push PAS forward?
  • What are the work issues?

As we expand the PAS concept to other potential user groups not using this care delivery model: elders, MR, psychiatric disabilities): how do we take the information being generated on young adults?

This is timely, for the sheer weight of demography. There will be more users.

It ties in with the politics of responsibility: groups of people who want to assume personal responsibility for managing and supervising delivery of their care so they can remain productive members in their community. Many, by government regulations or financing, are prevented from doing so.

The Olmstead decision and MICASSA open things up.

So the research agenda needs to look at: Who's getting PAS, how? We need to look both between groups (elders, young adults with disabilities, people with developmental disabilities, psychiatric), and also among groups.

If they're not receiving PAS: why not? Is it a matter of personal preference? Are there cultural differences? Is it a matter of socioeconomic status?

  • Who's getting it?
  • why not?
  • who wants it?

There are opportunities:

Common issues: workers regardless of personal attendant service provider or homemakers home health care workers for elders.

Common goals: there are no studies that say 'people really want to be in an institution' People want to stay home, in the community.


Can we 'hang together' (in groups and between groups)? Are there things to measure consistently among groups?

Among elders there are vast difference in opinions on the best way to provide services.

Can we find a way to talk about or envision a common message?

There may be provider/worker backlash. Can people in agency models be employed if self-directed PAS takes effect?

Next steps:

Some projects are coming to an end.We need to look at who's getting it, why or why not, and the practical next steps to identify the different reports.

We need to evaluate the current demonstration projects. Look at cash and counseling, independent provider self- directed care.


Reported by Sigi Shapiro, a longtime disability-rights advocate

Our initial theme was to talk about funding for PAS or funding for advocating for PAS or building state coalitions.

We realized we needed to address the language issue, which we see is a common theme here.

PAS as a term doesn't work in the aging community. 'consumer direction' is better.

It needs a mission and message that we agree on.

We agree on the following things:

  • we all need services
  • there have to be be services for people with all types of disabilities
  • PAS is an entitlement
  • it's a civil and human right
  • it's about consumer control
  • There need to be competitive wages for PAS providers.

Who are in the groups? Judy Heumann mentioned the parent-training initiative project. We talked about the Centers for Independent Living, PAS, DD councils, mental health and aging groups. Some groups combine those 2 constituencies. Self-advocacy organizations, UAPs, NAPPAs, VR agences, special ed councils, AARP, and unions

Who are the groups making efforts around securing services? The CILs are mandated to do advocacy. The state SILC's can support them.

Coalition-building is needed for funding for advocacy. Here in October there will be a conference on self-determination. Maybe others will want to try to attend also

We'll be linking major listservs - building coalitions around this issue.

We're researching all funding sources. Cincinati passed a city property tax. In Ohio several counties passed mill-levy taxes to specifically fund home and community-based services for elders. There are new funds designated for those services. In one case it's AAA acting as a coordinating agency to determine how those funds are spent.

Pennsylvania raised blue-zone parking fines; 95% goes toward research on PAS.

We can target other conferences like the NAACP and the national conference for research on aging.

We need to lobby foundations and encourage them to foster cross-population involvement.

Cindy pointed out that this is a women's issue, and we need to add NOW to the list.