A brief update on Self-Determination in NY State

June 5, 2001

by Steve Holmes

(Steve Holmes is the Administrative Coordinator of the Self-Advocacy Association and editor of the Self-Determination Task Force Newsletter. The following article was written in December of 2000. Since that time, all major OMRDD Committees related to self-determination have met and given input into a full proposal that OMRDD recently submitted to the Division of Budget for final approval. The proposal included the Personal Resource Account process, which is a key factor in making individual budgets work in New York State.)

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 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.

Moving forward with individual budgets:

The real beginning of Self-determination


Over the last four years the Self-Advocacy Association of New York State has played a key role in the development of self-determination opportunities in New York State. (See attached article by Steve Holmes for a summary). Through grants from DDPC, OMRDD, and the Robert Wood Johnson Foundation, SA has helped spread the word about self-determination throughout New York State, organized a statewide and a number of regional task forces to promote self-determination, and participated in virtually all major regional and statewide meetings and activities related to self-determination. We have learned a lot from this process but there are three key areas that we would like to note:

1. Many people with disabilities in NY along with their family members and supporters are extremely interested in the idea of self-determination, the opportunity for control and true authority over their supports. Self-Determination is a choice that many people want.

2. System change on a statewide basis, especially the process of establishing individual budgets, is extremely difficult to accomplish (this is true of all state systems that are changing to accommodate individual funding)

3. The process of developing goals, plans and budgets that can be converted to an individual funding stream is complex and people who are interested in self-determination need a lot of support to put forth plans that can be approved. It is also an extremely time consuming process.

4. There will be a significant learning curve for both the system and people with disabilities as we move forward with self-determination.

What happens now

So far, we have had several pilots of self-determination like processes but none that have included some key components of what we’ve been trying to accomplish with self-determination; individual, portable budgets. In a sense, once DOB approves the Personal Resource Account (PRA), an individual funding process, the real story of self-determination will actually begin. From self-advocates’ discussion with staff of DOB this past year, and from what we’ve seen in both OMRDD’s current budget language and Tom Maul’s budget briefing for the legislature, we believe DOB will approve the PRA and the whole concept of Consolidated Supports and Services (CSS). Our understanding is that at least one hundred people, in each of the next two years, will have the opportunity to develop an individual budget utilizing the new PRA.

Given what we’ve learned and know about system change, we must anticipate that there will be a lot of challenges in learning to work with new processes. These challenges could include problems with local interpretations of the process at the DDSO level, lengthy approval times from Central office and/or DOB for individual budgets, and significantly lengthy time frames for people to go through the process of fully developing fundable proposals once they’ve been chosen to participate in this next phase of self-determination.

Self-advocacy remains committed to the process of developing individual budgets through self-determination as an option for anyone receiving support through our ‘system’. Members of our organization will continue to have a voice and be present in all state and local meetings about self-determination in the coming years. However we intend to shift the focus of our work some. Over the years, our efforts have been primarily focused on creating an army of people interested in self-determination and committed to helping us make it happen in New York. We’ve done that and are now ready to begin a new phase.

It is the belief of SA’s Board of Directors that at this point the most important important thing to do in the next few years is to ensure that as many of the two hundred people as possible, who will have an opportunity for an individual budget, actually achieve their dreams and goals. Self-determination will ultimately grow as an option if people demand it which we believe they will, but we need the successful stories to help inspire others and to convince people with disabilities, their supporters and the ‘system’ of the viability of self-determination.

We intend to take a hands on practical approach in the next few years. Self-advocacy plans to do what ever we can as an organization to help people work through their plans and budgets and circles and be ready to take advantage of the opportunity of an individual budget. At this point we think this is the best use of our time and efforts and resources that we can pull together. Here is a list of some of the activities we hope to pursue in the next few years:

1. Development of training curriculums and the provision of training for self-advocates and their families and supporters in at least the following areas: (These will first be offered to all people in the current and expanded pilot and then to others interested in self-determination.)

How to develop your circle of support

How to create a truly person centered plan for your life

How to develop an individual budget

How to hire, train and supervise your own staff and other support people.

2. We would like to write a focus paper with the assistance of groups of self-advocates and supporters that addresses the concerns about safeguards and self-determination.

3. We would like to bring in some consultants from the Vella agency in Canada to talk about Micro-Boards and try to generate some interest in this concept.

4. We would like to help define the role of support broker, as we know this is a critical one in self-determination. We would like to hire someone to work for us for a temporary period of time and then offer that person’s assistance as a broker to several people in the pilots to specifically assist them with their planning. We would work with this broker to develop a training tool around the processes and concepts of brokering based on their experiences.

5. We would like to develop a series of forums for providers in conjunction with NYSACRA that would focus on ways that organizations can embrace the concepts of self-determination and learn to offer support services that people will want to purchase with their individual budgets.

6. We would like to continue to support the work of the statewide task force by sponsoring two meetings and one of their newsletters in the coming year. The task force will hopefully find its own source of funding and support this year.

7. We hope to continue to make a limited number of presentations and conduct training’s across the state for those who continue to request information about self-determination.

8. We hope to continue to tell the stories of those who are succeeding with self-determination through a booklet of success stories.

9. We would like to fund the activities of an independent self-advocacy agency that would be a provider of supports based exclusively on the concepts of self-determination.

This is a crucial phase for self-determination. Once DOB gives the go ahead for PRA and CSS, we have a whole new learning curve to approach, new challenges, new obstacles and new opportunities. System change is difficult. Self-advocates are committed to be being a player in the kind of slow, thoughtful system change that results in true choice, real alternatives to tradition approaches, and real opportunities for people with disabilities to simply live everyday lives in their communities. It can happen. It will happen. Individual budgets through self-determination are an important step in the process.

Finally, it is important to note the key role the Developmental Disabilities Planning Council has played throughout the process of learning about and developing opportunities for self-determination in NY State. DDPC grants to OMRDD, the Self-Advocacy Association, as well as related grants to other organizations, have been real catalysts and provided the seeds of change that new ideas like self-determination need to flourish. The seeds have been planted, now we need a lot of watering, fertilizing, some good weather and a lot of tender loving care to make self-determination and individual funding opportunities grow in New York State. Self-advocates in New York and our many supporters are committed to doing whatever it takes to make it happen.

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