Self-Advocacy

OPWDD understands how important it is to share information and connect with others. We know it can be hard to know where to find help and advice.

We want to help you connect with groups across New York State. These groups include self-advocates, parents, and families who have gone through similar experiences and are ready to share what they've learned.

Many of these groups are run by self-advocates and parents of children with disabilities. They are often supported by professionals who can offer help or direct you to other groups that can answer your questions. 

You can also find resources on this page to help people with developmental disabilities advocate for themselves and to support their friends and families in advocating for them.

The OPWDD Office of Advocacy Services can help support you in your advocacy efforts. The Office of Advocacy Services oversees the work of the independent Ombuds program and ensures that the perspectives of self-advocates and family members are included in agency initiatives, outreach efforts and agency policy. OPWDD’s Peer Specialists work within the Office of Advocacy Services to assist self-advocates and family members.

OPWDD’s Peer Specialists:

• Advocate alongside of and on behalf of people with developmental disabilities
• Strengthen the capacity of the self-advocacy community through individual and group education and outreach.
• Educate people with developmental disabilities and others about their civil rights
• Provide input to OPWDD on policies, procedures, and communications using lived experiences as a key component.

1.  Self-Advocacy Association of New York State (SANYS): SANYS is a statewide network of self-advocates with intellectual/developmental disabilities.  SANYS has regional self-advocacy groups throughout New York State that provide opportunities for people to meet and discuss ideas and concerns with people who have had similar experiences.  The regional self-advocacy groups assist people with developmental disabilities to become full and valued members of their communities, and help to educate people on their rights and opportunities.    
2. Self Advocates Becoming Empowered (SABE): SABE is a national organization that represents and provides services to people with developmental disabilities.  SABE’s mission is to ensure that people with disabilities are treated as equals and that they are given the same decisions, choices, rights, responsibilities, and chances to speak up to empower themselves; opportunities to make new friends, and to learn from their mistakes.
3. Independent Living Centers: The New York Association on Independent Living (NYAIL)'s mission is improving the quality of life, safeguarding the rights, and ensuring equal opportunities for all people with disabilities, as well as promoting the independent living philosophy both within the disability community and to the public.
4. Tourette Syndrome Association of Greater New York State (TSA): The Tourette Syndrome Association of Greater New York State is an affiliate chapter of the national Tourette Syndrome Association, Inc., a national voluntary health organization dedicated to identifying the cause, finding the cure and controlling the effects of Tourette Syndrome.
5. The Autism Society of America: The Autism Society of America provides advocacy, education, information and referral, support, and community at national, state and local levels through a nationwide network of affiliates.
6. The Sibling Leadership Network: The mission of the Sibling Leadership Network is to provide siblings of individuals with disabilities the information, support and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.
7. NYS Justice Center for the Protection of People with Special Needs: The Justice Center’s Individual and Family Support Unit provides resources and support for people receiving services and their families.

Accessing Life is a podcast focused on empowering people with developmental disabilities to live their best life.

Listen to Episodes on YouTube

In this video, self-advocates speak up and tell us what advocacy means to them and what they hope the future of advocacy will hold. This video was developed with the Self Advocacy Association of New York State.

In this educational set of videos, you will hear directly from people with developmental disabilities about the importance of open dialogue, information and community connection in helping people have meaningful relationships and supporting their sexual self-advocacy. These videos were developed with the training company Elevatus, the Self Advocacy Association of New York State (SANYS), and the filmmaker, the University of Minnesota. The videos will soon be accompanied by an online toolkit that will further assist self-advocates, professionals, and family members in supporting people with developmental disabilities around sexuality and relationships.