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OPTS Makeover Suggestions

OPTS Makeover Suggestions

Submitted by

The Individualized Supports Think Tank and

The Self-Advocacy Association of New York State

Introduction:

We agree that the OPTS project needs a Makeover, a fresh start, and we offer the following comments and suggestions with the belief that we have not lost the opportunity for OPTS to be the transformational system change initiative that it was envisioned to be. We are also hopeful that the Real Choice System Change Grant will assist OMRDD to recreate OPTS, to a great extent, as an incubator for truly person centered, designed and individualized supports.

A recent National UCP study shows that NY has over 19,000 people living in 8 to 15 person homes. This is a legacy of the post Willowbrook era that can only reversed by thoughtful planning and a long-term commitment to innovative system change with a preference for small, individualized supports. We have many examples in NY, through CSS, OPTS, ISS grants and other waiver supports such as res hab and day hab without walls. We need to build on what weve started and over time convert our system from one that is dominated by large group living arrangements to one that is based on individualized supports.

By individualized supports we dont mean everyone living alone, though some may, we mean people and their families and friends having direct involvement in creating living and working and other day situations that work for them; and are characterized by person centered planning and design and individualized choice in all the decisions related to where people live and spend their days. Who we live with, where we live, what our homes look like, how we organize our lives, and who works with us and for us--these are things that people with disabilities want to decide for themselves even when they live with others.

Attached is a copy of the Individualized Support Think Tank brochure, which includes a statement that we would like to offer as a definition of individualized supports which we believe should be endorsed by the OPTS process. OPTS will only be transformative if it stays with some principled guidelines that move the system towards a vision of individualized supports and real choices. Such a vision was created at the Partnership for Community retreat held in Syracuse in the Fall of 2004. We have included a copy of that vision statement with this paper and we recommend that this statement also be used as a benchmark within OPTS. As a system, we will not advance this vision of true community participation without significant innovation over time.

Here are some specific recommendations:

Question 1. How should we further refine and clarify the focus of the OPTS initiative? And Question 2. What types of proposals (services/supports) should be supported by the OPTS initiative?

OPTS should transform our system to a person-centered and -designed one. We use the word design here to indicate the activities that individuals and their families, in partnership with providers and others, engage in to create supports that meet their individual needs and dreams. OPTS should be an incubator of new ideas and ways to provide individualized supports even when people choose to live in groups.

Many of us believe that the best way to do this is to simply state that all new funds available to our system be dedicated to new person centered and designed initiatives. But realistically, we offer a two-track proposal: 1) continue to downsize traditional group living situations but do so with a prerequisite of individual involvement in the design and reconfiguration of new living arrangements; 2) dedicate at least 50% of available funding to innovative, person centered living and working supports and other community based activities.

1) People Sizing:

Thus far, many of the OPTS proposals have been downsizing projects. You could ask the question, Given that downsizing has been an option for a number of years, what about OPTS makes this happen now? The answer it seems is the additional funding available with OPTS. We hope that downsizing projects have also included significant involvement of individuals and their families and we all know some that have but this should be a prerequisite in OPTS. We believe we should think of the reconfiguration of current group living arrangements and various day supports as people sizing.

As indicated above, our system has too many large homes, too many buildings and facilities. In order to evolve to a system with more capacity to provide individualized supports, downsizing a 12-person house to two six-person or three four-person homes is a step in the right direction. But, it is an opportunity lost if we fail to offer a full range of real choice to each person living in a large home. It is also an opportunity lost if we do not significantly include all people who live in a home in the downsizing plan. OPTS downsizing projects should be characterized by choice and involvement in the design of the homes and living arrangements that are created by this process. OPTS projects should never be about an organization deciding that a 12-person house should become two six-person houses and then convincing people that one of those two options is best for the them. All choices, including self-determination and other individualized supports, should be considered with each person and their family.

These same ideas should apply in large day program conversions.

Innovation

OPTS should lead our system to innovation by listening to the desires of people and families that the system currently supports and those who are seeking supports. OPTS projects should focus on creating supports that reflect a persons vision for their life (with the help of their families and friends) . At the same time, we need to teach what is possible with new thinking and new ways of funding. We have to tell the success stories of those who are already living their dreams in NY through individualized support, especially those who have used OPTS successfully.

As stated above we think that at least 50% of all OPTS funding and people supported by OPTS should be dedicated to truly individualized supports.

3. What Changes, if any, would you make to the OPTS application?

It should be a simple process but there needs to be some clear guidelines that reflect the philosophical underpinnings of OPTS such as suggested above. There should also be some financial parameters and preliminary discussion early on about funding levels. Organizations and individuals cannot create effective proposals in a vacuum with no indication of what is possible financially. It leads to wasted time and frustration for all.

4. What changes in the evaluation?

We believe there should be a more extensive focus on quality of life gains and more focus on assuring that the person and their families have had significant initial and ongoing involvement in the design of their OPTS proposal and funded supports.

5. Should OPTS be decentralized?

Yes, decentralization leaves decision-making at local level and should involve family and consumer input and review. But all DDSO areas should adhere to the fundamental principles of OPTS.

The question of centralization vs. decentralization is a moot one if the resources to process intense and complex proposals are not there. New processing resources must be made available for more individualized, hands on type of proposals.

6. What recommendations for streamlining OPTS?

In order to accomplish significant system change, a system has to invest in the change making activities. We need more staff positions dedicated to OPTS at OMRDD Central Office and Regional Levels or alternatively we need to contract for these activities. We need to fund training on innovations and research on individualized supports in New York and around the country that are person centered and driven. In the long run, we need to pilot support broker models and other new ideas and invest in the training of people who have the skills and knowledge to help create new support models geared for individualized supports. We need many more trained staff who are not only knowledgeable about person centered planning but who have the skills to help people create plans and budgets that are fundable.

7. For proposals (services/supports) that you believe should be funded outside of OPTS, which guiding principles or other parts of the OPTS process should be included in these processes?

All OPTS principles should stay in place even for services and supports funded outside of OPTS. There should not be a one size fits all process for OPTS. OPTS proposals that are simple and low cost should have a fast track. All OPTS projects that involve three or less people should also have fast track.

8. Other Comments:

Self-advocates and others with developmental disabilities and family members and advocates should be involved with the OPTS approval process on the Central Office and DDSO level to assure adherence to stated principles.

OPTS has great promise in the potential for innovative day and employment supports. This should be a special emphasis within OPTS.

Our system should consider the value of moving towards one that has, at its base, an individualized budget for each person supported. It is one way to truly transform the system. Even in a fee for service system like OPTS, it is possible to create individualized budgets that allow people to choose to move their supports to another provider over time.

OPTS funding must be flexible to allow for the greatest degree of innovation and individualized options. OPTS needs to experiment with different rate methodologies - the present rate mechanisms continue to support group-based projects vs. individualized supports.

OPTS system change and innovation projects should reflect a true partnership with OMRDD - the proposals should be joint proposals between the provider, individual/family and OMRDD. OMRDD needs to modify their "reviewer" role to one of partner.

Note: The above recommendations and comments reflect an agreed upon compilation of comments from members of the Board of the Self-Advocacy Association of New York State and members of the Individualized Supports Think Tank. We will continue to provide feedback and support to the OPTS Steering and other committees as we move through the OPTS Makeover process.

Submitted by Steve Holmes,

Administrative Director of SANYS

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