By Tom Nerney
The aftermath of "The Alliance for Full Participation" deserves some reflection and commentary. The Center issued a widely distributed statement that asked for planned questions about attendee beliefs in full participation for persons with disabilities be turned into an affirmation of the fundamental right to participate fully, control the dollars in the human service system, as well as the freedom to work. Led by SABE and a vast majority of attendees with integrity and goodwill these issues were swiftly affirmed.

My reflections were then and are now from a distance. My initial anger has turned more to sadness. What may mark this pivotal meeting of so many professional and provider organizations is characterized more by lost opportunities and the failure to adopt bold strategies. Yet, I think if we see this meeting in a wider historical context we can all learn without painting with so wide a brush as to call into question the motivation of so many decent people.

I think it is important to reflect on how we use the word truth. In the context of this discussion it can take three forms. I was struck recently by the first form. The Rhode Island Supreme Court ruled in a case that attracted national attention involving fact-based truth. In that case a man who was adopted and now a practicing Mormon argued that he was entitled to obtain the name of his birth mother based on the teachings of Mormonism. The justices rejected his argument ruling instead for the higher value of confidentiality given to his birth mother and relied in part on what they called the “wisdom” of a 19th century opinion from the English Court of Chancery: "Truth, like all other good things, may be loved unwisely, may be purchased too keenly, may cost too much." This court was clearly saying that when my truth impacts your truth there may be limits. Even with regard to facts.

It seems to me that what some are referring to is the second form value-based truth. In many ways these truths are even more important to all of us personally. It is helpful to be reminded of its importance and the richness and variety of these personal truths. But, Marsha Katz from ADAPT got it precisely right when she said on the Alliance for Freedom and other list serves that she had no obligation to honor truths that potentially denied a huge segment of the population full citizenship. It would also be hard to argue that the voices of those uninvited and absent from this meeting with all their "great variety and the richness and strength that come with it" were intended to be heard at all.

But even more important is a third kind of truth. These are the unarticulated truths that may simply be too difficult to acknowledge. This meeting could be described as the provider and professional organizations in the field of developmental disabilities circling the wagons in a time of real trepidation. I thought hard of who was present, who was invited and not and who was absent. The context for these reflections was provided by the two bookends to this meeting. The Alliance for Full Participation started just as ADAPT was finishing another "in your face" Washington series of protests on what they justifiably call life and death issues. Arriving just following the Alliance are the members of Not Dead Yet for the Supreme Court hearing on whether or not (to put one clear interpretation on it) people with disabilities are entitled to the same services the general population receives from suicide prevention programs.

The context for me was stark. None of these groups and as far as I know (with the exception of SABE) none of the signatories to the Not Yet Dead brief were invited to present at the Alliance for Full Participation. Were these life and death issues not important enough to merit major discussion in a forum dedicated to fostering policy and practice for the foreseeable future?

Absent were the voices of so many leaders with disabilities from many organizations with much to contribute. Absent were the voices from grassroots parent groups. On the political level absent were representatives from the Congress and key administration officials. In this time of increasingly scarce resources where was the dialogue between disability representatives and Medicaid and Social Security officials?

An Alliance Medicaid policy statement was developed just for individuals with developmental disabilities. This ignores the reality of state Medicaid budgets where nursing home beds consume a disproportionate share of long term care dollars. And of course, missing from the program altogether, was one of the central ethical issues confronting all of us: a disproportionate share of Medicaid long term care dollars is directed to the population of individuals with developmental disabilities in spite of the fact that tens of thousands of these individuals remain un-served. At what point in this crisis of funding and misplaced priorities do we raise the question of equity across all disabilities?

Absent were any representatives from the many self-determination sites around the country who represent some of the most innovative systems-change efforts of the past ten years. New partnerships have emerged in critical counties that are demonstrating that the system can change (albeit slowly) and that individuals with disabilities can not only contribute but provide leadership in partnership with courageous professionals, dedicated workers and ordinary community members.

Not absent were corporate sponsors.

And so, some truths remain unspoken.

Until we all recognize what leaders with disabilities have been saying about our common humanity and aspirations, until we recognize that we all share the same common grounding in what it means to be a citizen and fully experience the life of our communities as free men and women, then we will continually deny the promise of full participation to individuals who experience disability. We can only hope that the richness of this kind of common vision is a more powerful truth.

- The Florida Freedom Initiative
Individuals in the Miami and Broward areas have been working on updating their plans for their lives, including finding ways to earn income and become more financially independent. The project is awaiting word from CMS on the changes to the Medicaid Waiver to allow people more freedom to purchase supports that will lead to greater self-sufficiency. They are also still seeking banking resources and matching funds for FFI Freedom Account deposits. The first individuals will be enrolled in the FFI by October 1, 2005, in the Miami and Broward areas. The project will be extended to the additional areas of Tampa, Orlando and West Palm Beach in the coming months.

- INCLUSION MATTERS!

The Center assisted TASH in hosting the INCLUSION MATTERS conference of the Florida Developmental Disabilities Council Task Force on Community Living and Service Coordination. Close to 500 participants at the three-day event enjoyed a relaxing yet motivating event, that ensured that they not only return home with enhanced knowledge and skills for change, but with new ideas of what is possible for everyone. Each day was structured with a keynote event, breakout sessions, opportunities to network, and access to table top exhibits.

- LEARN IT. EARN IT. In Michigan

- Power of the People - October 25 & 26 in Ohio

- Self-Determination for Texas

"Demonstrate What You Advocate."

- Marsha Katz, ADAPT Montana, People First Missoula, The Rural Institute