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