Self-Advocacy
in New York
We are fortunate to have a strong statewide self-advocacy association
run by and for individuals with developmental disabilities celebrating
its 25th anniversary . The Self Advocacy Association of NY
State (SANYS) develops and supports a grass roots network of
self-advocacy groups & leaders with a local, regional and statewide
focus.
Self-Advocacy Organizations in NYS
Other self-advocacy organizations in NYS include:
• Youth Power - NY partner of the National Youth Leadership Network for
empowering young people labeled as disabled to be active citizens, aware of government operations, their rights and the ability to use their voices to influence policies, practices, regulation and law.
• Global Regional Asperger Partnership (GRASP) - seeks
to improve the lives of adults and teens on the autism spectrum through community outreach, peer supports, education, and advocacy with 7 regional NYS chapters. There are other groups being developed with a more regional presence.
• Independent Living Centers - 39 ILCs across the state provide an
array of services that assist with living learning and earning and remove barriers to full participation in the local community and beyond.
Resources for Self-Advocacy
Organization Who provides the
resource(s)?
What resources are provided?
Self Advocacy
Association of NY
State (SANYS)
OPWDD, DDPC, Providers
agencies, family & community
groups, other disability groups
Funding, Participation in system
planning & systems advocacy,
transportation, networking
Youth Power/
National Youth
Leadership
Network (NYLN)
Staff, Advisory Board,
Committees
Regional Youth Partners (forums,
youth group connections);
Ready to Achieve Mentoring
Program; Information Resources;
Systems Advocacy
Global Regional
Asperger Partner-
ship (GRASP)
Subscriptions, donations,
merchandise
Funding.
Independent Living
Centers (ILC)
ACCES-VR (Adult Career &
Continuing Education Services
– Vocational Rehabilitation),
DDPC, OMH, OPWDD,
County & local FFS
Funding, Networking, Systems
Advocacy
What Works
SANYS
• Strong grass roots organization with over 150 self-advocacy groups
• Experienced board members elected regionally
• Partnerships and relationships built and sustained over time, including partner-
ships with providers that encourage new ideas leading to new choices for people
• Annual regional and statewide conferences
• Having several stable sources of funding over the years
• SANYS advocacy leads to system transformation – including annual legislative
platforms & position statements and developing experienced self-advocate
presenters
NYLN Youth Power
• Similarly, Youth Power! finds success through outreach and direct involvement
of cross-disability youth - Giving youth a voice in the systems that serve them.
GRASP
• Establishing peer support groups, including specific groups for youth and older
adults, providing mutual support and referral to resources
Challenges
• Funding for self-advocacy is limited and financial problems make it
challenging for some partners to support self-advocacy.
• Entrenched legacy systems make self advocacy difficult and leave
individuals with no advocates, (themselves or others) more prone to
abuse and neglect
• Difficulties engaging students in schools and young people in
communities - finding ways of getting youth involved over long
distances & in rural areas.
• Supporting people who need a lot of help to speak for themselves.
• Transportation and other supports.
• Size and diversity of our state.
• Fewer statewide meetings of families, self-advocates and providers
reduce opportunities for relationship building and networking.
• Educating the changing staff of various partner organizations
We Are Proud Of
SANYS
• 25 years as an organization! Our grass roots structure works
• Many SANYS leaders are successfully employed in our system
• Hosting a successful national conference in Buffalo in 2002
• Our “We have Choices” video and all our work on individualized services
• Our concept of Me to WE, an important idea in the coming years
• OPWDD Name Change
NYLN/ Youth Power!
• Growth of the Regional Youth Partners (RYP) & Ready to Achieve Mentoring
Program (RAMP) .
• A strong advisory board working toward organizational incorporation.
GRASP.
• Ensuring that voices of people with Autism and Asperger Syndrome are heard.
Our Goals and Dreams
SANYS is working to:
• Communicate more effectively with members
• Help everyone tell their stories
• Grass roots outreach to more people
• Develop future leaders
• Increase choice of supports
• Partnership with parents/families in advocacy
for people needing supports to express needs
• Increasing opportunities for employment &
contribution to communities
• Expanding national self-advocacy outreach to
states
YOUTH POWER! envisions a world
that embraces diversity, encourages
resiliency, is strength-based and has the
ability to adapt. A community, in which
young people are inspired, empowered
and supported to make informed
choices.
NYS Team
• Clint Perrin, SANYS
• Shameka Andrews, SANYS
• Mitchell Levitz, SANYS
• David Liscomb, SANYS
• Chshone Bailey, SANYS
• Tamelia Fritz, DDPC Caucus
• Steve Holmes, SANYS
• Tracy Durfee, OPWDD
• John Maltby, WIHD UCE
• Robert Marion, RFK
UCE
• Joanne Siegel, RFK UCE
• Susan Hetherington, SCDD UCE
• Bill Combes, CQCAPD/
P&A
• Anna Lobosco, DDPC