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We Have Choices

Legislative & Policy Platform
March 2008


This platform was developed and approved by the Executive and Legislative Committees of the SANYS Board in February 2008. The Self-Advocacy Association of New York State (SANYS) is a not for profit organization run by and for people with developmental disabilities. As a grass roots organization, SANYS has developed an extensive local, regional and statewide network of self-advocate leaders, self-advocate groups, and regional teams.  The primary purpose of SANYS is to help people with developmental disabilities speak-up for themselves individually and collectively.  This policy platform is a primary example of SANYS’ purpose in action.  A key theme of the organization is “Nothing About Us Without Us”.  This means wherever decisions are being made that affect the lives of people with developmental disabilities, self-advocates expect to be part of those decisions.

People-Centered Priorities

1. Our System Is Not Broken
We have been concerned this year to hear OMRDD’s “system” of supports referred to as “broken”.  We believe that is unfair to the many thousands of people who receive supports every day in New York and the direct support and other staff of organizations who provide them with those supports.  Most self-advocates are supported in some way by services funded or provided by OMRDD.  As self-advocates, we advocate for more person centered, more individualized supports, supports that are based on our needs and wishes, and in the case of people who do not speak for themselves, the wishes of parents and family members who know their needs and love them. 

While we have many issues we advocate to change and improve in the system, we do not see it as “broken”.  We see much that is good, changing and evolving.  We appreciate the openness of OMRDD in involving self-advocates and parents in system change efforts.  We also know many caring staff members (administrators and direct support staff) who value the work they do for the relationships they have with people with developmental disabilities. OMRDD supports over 125,000 people and we believe that many would express satisfaction with the supports they receive and would agree that the “system” is not “broken” but in fact one that is growing in response to the needs of people with developmental disabilities and their families.

We have helped form a group called Partnership in Support of People with Developmental Disabilities, which is committed to ensuring that the media and legislators hear our point of view about our system and that legislators and government officials include self-advocates, family members and provider organizations in all decisions or discussion of proposed legislation that affects our lives.  A statement from the ‘Partnership’ is attached to this document.

2. Continue to recognize the importance of Direct Support staff
For many of us, direct support staff are very key people in our lives. We depend on these dedicated men and women to assist us in the many important activities in our daily lives. We appreciate the efforts that have been made in the last few years to increase salaries and benefits but more must be done in the coming years especially as more and more people receive individualized supports. We are in favor of legislative and policy efforts that address the long-term needs of those of us who depend on staff who support us seven days a week. This includes better pay and benefits, but also includes ensuring that they are respected and have the necessary education, training, and skills. In addition, opportunities for advancement must be available. And of course, we also expect to have a voice in the hiring decisions of people interested in working with, and for, us.

3. Support Medicaid
Medicaid is the only way that most people with disabilities can afford health, vision and dental care as well as personal care and other long-term services. We are opposed to State and Federal cuts in Medicaid that would reduce these essential benefits and services. It is imperative that Medicaid continues to be a reliable source of funding for the health care and the long-term services (such as residential services, day services, service coordination and individual supports) that people need to be healthy, happy and involved in their community.

4. Focus on individualized supports and self-determination 
The current system of services and supports has become highly complex and regulated.  Supports and services need to be user-friendly and truly controlled by the people who receive the supports. We feel that individualized services and opportunities for self-determination should be readily available to people currently living in group homes or attending day programs, as well as to people on waiting lists for support services.  We are excited to finally see people creating their own life opportunities with individualized budgets through Consolidated Supports and Services (CSS).  We are working towards the day when individualized supports are available to everyone receiving or seeking supports from OMRDD.
We do not support the development of Individual Residential Alternatives (IRA’s) or other group living situations unless a home is truly developed at the request of the individuals and their families.  We favor residential and work opportunities that maximize a person’s control of the resources and choice of supports available to them. 
We are very hopeful and optimistic about a new five-year Real Choice System Change Grant that OMRDD has with the Federal Government. This grant will support transformative system change that will lead to more individualized and person centered supports. The grant will focus on three very important areas: Choice, Housing, and Funding. 
We are very supportive of Commissioner Diana Jones Ritter’s plan to balance OMRDD’s array of services to include more individualized supports.  We believe the People First approach the Commissioner speaks of is truly an example of person-centered priorities.

5. Day and employment supports must work for us in New York State
People with disabilities want to be tax paying, working citizens, and able to make a contribution to their communities. There are many changes occurring at the State and Federal level concerning support for employment and day services. We need to take a comprehensive, across State Agency look at the funding and resources people are offered for their work and day supports. As noted below, we are excited about the possibilities of the Most Integrated Setting Coordinated Council. The time has come for day supports to become more individualized and much less dependent on facilities.
We believe in supporting people in competitive and supportive employment, self-determination and also in the concept of person-controlled day supports “without walls”.

6. Voting Accessibility
We urge people with disabilities, advocates and supporters to make sure local polling places accommodate the needs of all voters. Accessible means that a person using a wheelchair or a walker will have a barrier free polling place and a fully accessible and private voting booth.  Polling locations must also be accessible by public transportation that is readily available to people with disabilities. Finally, the type of voting machines to be used during elections must be accessible to all voters.
Voting is a right and a privilege. Collectively, as people with disabilities, we have a strong voice as voters. We urge provider agencies and other organizations to join with us in holding voter registration drives.

7. Name Change for OMRDD
For many self-advocates and family members the term ‘mental retardation’ is totally offensive and hurtful.  The negative use of related words are too commonplace in our society and in our community. To us it is a very stigmatizing word, not unlike many of the words that were used to describe people with disabilities in past times, words such as “moron,” “idiot,” “deviant” and others that are now just part of our history. We believe it is time that all organizations including OMRDD remove the term “retardation” from their organizational title. In the coming year, we intend to respectfully engage everyone across the state in a dialog about a proposed name change in an effort to build support for a Legislative Proposal to change OMRDD’s name. One of our themes is this campaign will be, “Hey, we’ve changed, but the name hasn’t. It’s time it did”.

8. School to Life Transition
 We believe much more effort must go into providing students and their families with comprehensive individualized choices for work and day support and individualized living arrangements when the individual and the family are ready.  Our system is evolving to one that is individualized. As we begin to talk to young people, future self-advocate leaders, and their families, we know that many of these young adults dream of a very different life than that offered by traditional residential and day services, which despite all the new individualized supports available, are still the most common and likely offered to young people in transition. In the coming year, we will increase our efforts to teach young adults about the possibilities of individualized supports.

9. Support the Work of the Most Integrated Setting Coordinating Council—MISCC
We are very encouraged by the renewed sense of collaboration and cooperation across State agencies that is now so evident in the meetings of the MISCC.  We believe that the three key sub-committees of the MISCC—Housing, Transportation, and Employment all have the potential to greatly change these key areas, which are funded and supported in New York State.  The MISCC’s goal is to support people to live in the most integrated setting possible. Housing, transportation and employment are three essential areas that need a statewide, interagency approach.

Board President: David Liscomb
For more information, contact:
Stephen Holmes
Administrative Director
Self-Advocacy Association of NY
500 Balltown Rd. Bldg 5
Schenectady, NY 12304

Fax --518-382-1594
Cell-- 518-796-8769


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