This holiday season we at the Center would like to bring you special greetings and hope for a meaningful and fulfilling 2005. We face in the next year the arrival of "The Perfect Storm." We have witnessed this year the advent of significant attempts to restrict eligibility for Medicaid. Next year these state forces will be joined by federal authorities, intent once and for all at "restructuring" Medicaid. There are two incontrovertible facts we must recognize. One, the National Governor’s Association has identified state Medicaid budgets as the number one state fiscal issue. Medicaid spending is growing at unsustainable rates. In fact we could say we are witness to the potential unraveling of the Medicaid program as we have known it. We may also be simply bystanders in the collapse of the community system as well.

Second, Medicaid recipients are among the poorest of the poor and have very little political clout in these discussions. This year many states have tightened Medicaid eligibility and in Mississippi attempted to dis-enroll over 60,000 current Medicaid recipients. In Tennessee eligibility for over 400,000 current recipients remains in jeopardy. This list could go on and on. The major voices raised in opposition to these cuts are not those who will be hurt the most. Rather, the providers which will be affected are the voices heard the most and have the most influence. Among these providers are the single greatest users of Medicaid resources: the nursing home industry.

An AP story of December 10^th illustrates the personal implications these institutions have for all of us. This is how the AP story began:

"Bismarck, N.D. Dec 10, 2004—More than 20 years ago, federal Judge Bruce Van Sickle issued a landmark decision that led to the release of hundreds of mentally retarded people from two North Dakota institutions. Now, 87 years old and stricken (sic) with Alzheimer’s, the retired judge is himself at the center of a legal fight to remove him from an institution."

The judge was forced into guardianship and left first in a locked ward and then a specialized ward of a nursing home. In an interview, the judge (who may have developed Alzheimer’s but had not forgotten the importance of freedom, albeit with assistance) simply asked for the same kind of consideration that he gave to those with disabilities confined to North Dakota’s institutions 20 years ago.

In the field of long term care (euphemistically speaking) the costs are also soaring and with the aging of America will present almost insurmountable problems for those with disabilities. Even within the broad disability community there is no agreement on how to fairly allocate limited dollars among various disabilities. Those with the most to lose in future realignments, individuals with developmental disabilities who receive resources disproportionate to their numbers, remain on massive waiting lists across the country. Over 700,000 live at home with an aging caregiver today. When the increased costs of long term supports is linked, as it is in every state budget, with prescription drugs and new medical technology, we must finally acknowledge that change is certain. The crucial question is what kind of change.

Self-Determination is not a panacea. These issues are so huge that multiple strategies must be employed. New resources as well will have to be developed. However, self-determination has been structured through the Center as one way of simultaneously increasing quality while obtaining better value for current public expenditures. We are reluctant to market what we do as a way to save money. That said, I believe it may be time to market the work of the Center as a way to serve more individuals with limited public resources. The central issue of the future will be exactly that. Can we get better value for the money? And, can we establish self-determination strongly enough to support freedom and responsibility in enough numbers that it becomes the major alternative to traditional human services in the field of long term care? And not just to institutions but congregate community settings as well.

These are not selfish issues for us and are no longer rhetorical questions. We are small in numbers. Just under a thousand of Alliance for Freedom members. We have extremely limited resources and have built the Center on the incredible hard work and dedication of a handful of people numbering just over 35 (only two are on salary) and both substantially donate their time and compensation back to the center. Yet, even with these limited resources we are having an effect way out of proportion to our numbers and our resources. We also have the distinct honor of working closely with many state officials and regional and county public officials who often go unacknowledged for their contributions and commitments to bring self-determination to a growing number of individuals with disabilities. We must not forget the countless providers and workers who believe strongly in self-determination and grapple daily with how to make it a reality in a complex and often irrational system.

Finally, our greatest source of sustenance is the personal work we are able to do directly with so many individuals with disabilities, families and allies. The design of our individual budget training, e.g. around individuals with disabilities and their family and allies brings us into direct and personal contact with so many. These trainings, in over 18 states so far, have also taught us that people with disabilities and their families, once they see that their own personal efforts at being cost efficient and productive are worth the labor invested in changing, frequently celebrate the ability to share scarce resources with those who have none. This is real leadership.

In a season that is often characterized by high expectations and renewal self-determination offers hope. Hope that this movement can be transformational at the personal and family level. And hope that we can lead the way to a more cost effective long term care system. Dare we even think it? A system that will serve more individuals but in ways that promote real freedom, the exercise of responsibility for public funds, the emergence of income and asset development for all and the creation of meaningful lives supported and embedded deeply in our communities. Mere optimism won’t do here. All of the demographics conspire against us.

In the face of overwhelming odds and growing cynicism we must work even harder this next year to make hope the quality that characterizes all of our work.

Tom Nerney
December 2004