What’s Happening in New York?

A brief update by Steve Holmes

Nobody said this was going to be easy.

Someone asked me recently, is self-determination dead in the water in New York State? Well the answer is no! But it could be argued that we’re in a bit of an ebb tide. Here’s a brief summary of what is happening as of mid-December 2000.

Several years ago we started down this path towards self-determination in New York. Members of the Self-Advocacy Association in a cooperative effort with OMRDD got a grant from the Robert Wood Johnson Foundation to create a learning community around the concept of self-determination. After speaking to thousands of people in New York and finding great interest, the Self-Advocacy Association of New York (SA) convinced Commissioner Tom Maul to initiate a pilot project for 24 people in five DDSO areas.

At the same time, SA received the first of two grants from the Developmental Disabilities Planning Council to "Make self-determination happen in New York State". One successful activity of the DDPC grants was to create e and support a statewide and a number of regional task forces. The mission of the statewide task force is on the back of this newsletter and some comments by the co-chairs and a list of contacts for the task forces can be found on page 2.

After limited success with the first pilot, a second phase was planned and a number of people (approximately 70) are in the process of putting together self-determination plans and proposals. Concurrently OMRDD, proposed a revised Waiver concept to the Health Care Financing Agency, (HCFA). This new waiver is called, Consolidated Supports and Services (CSS) and provides flexible supports consistent with the principles of self-determination. As part of this process, and based on the experiences with the first pilot, OMRDD developed a method for determining the amount of money a person would be eligible for through self-determination called the Personal Resources Account (PRA) . The PRA is based on needs. The text of that waiver and a statement on self-determination can be found in this newsletter. HCFA has approved the CSS, pending further New York State approvals, including the Division of Budget (DOB). DOB has been studying the idea of self-determination and has talked extensively with self-advocates and members of the task force about self-determination.

Now here is where the ebb comes in. The new CSS and PRA (apologies for the alphabet soup) are on hold while DOB completes it’s review which will hopefully lead to an approval of the process. Once DOB approves of the new process, people waiting to move forward, will have their individual budgets and will be able to activate their plans. This is when we will begin to learn about individual funding in New York.

In the mean time, some people who have been interested in self-determination have been able to move forward with creative uses of existing funding and resources. The stories about Arthur, Scott, Lori, and Rachel are good examples of people who have been able to move forward with their dreams.

In an effort, to keep the momentum flowing, the statewide task force and OMRDD conducted a planning meeting in October to identify barriers and obstacles and develop a work plan to move forward. A summary of that meeting is also included in this newsletter. One positive outcome of this meeting is that a number of important statewide committees will be meeting this month to review the report of the October meeting and discuss the committees responsibilities in the coming year. The committees include: Circle of Support, Service Coordination, Quality Assurance and Safeguards, Fiscal, and an overall advisory group.

Some members of the task force and self-advocacy attended an important national conference on self-determination in Seattle, which produced the statement which is on the cover of this newsletter. Within this newsletter you’ll also find two articles from the national perspective, one by Chas Moseley, and one by Tom Nerney.

What many of us have learned about the national efforts is that many states are struggling to make the changes in their "system" and fiscal processes that will enable people to create their own lives through individual budgets. There is so much to learn about circles of supports, creative budgeting, fiscal intermediaries, service coordination, natural supports, and most importantly how to listen to and support people to develop their own life plans based on their dreams and ambitions.

So some things are happening, though perhaps not at a pace that many of us assumed when we started down this road. There is still great hope that the idea of individual funding and control leading to a more satisfying,, everyday life in the community for people who want it can and will happen in our state. But we have a lot of work to do, lots of hearts and minds and systems to change. Some think of self-determination as a radical departure from traditional services. I think of it as part of a natural evolution of how we support people. In some ways, the activities of the task force and those of us trying to find a way to make self-determination happen represent an effort to organize the evolution. We need to stay with it.

(Steve Holmes is the Administrative Coordinator of the Self-Advocacy Association and editor of this newsletter)