OPWDD recognizes the importance of information sharing and networking among the people we support and their families. We also recognize that you may not know where to turn to get direction and guidance.
We want to help you get connected to the many groups that exist across New York State. Within these organizations are self-advocates, parents and family members just like you, who have experienced similar circumstances and are willing to share their experiences.
Many of these organizations and groups are organized by self-advocates and parents of children with disabilities. They are often staffed by professionals who can provide assistance or guide you to other advocacy groups that will be able to answer your questions.
Links to Advocacy Organizations
- 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.
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.
Parent to Parent of NYS: Parent to Parent of New York State builds a supportive network of families to reduce isolation and empower those who care for people with developmental disabilities or special healthcare needs to navigate and influence service systems and make informed decisions.
NYS Special Education Parent Centers: Parent Centers serve families of children of all ages (birth to 26) and all disabilities (cognitive, physical, behavioral and emotional). Parent Centers provide a variety of services including one-to-one support and assistance, workshops, publications and websites. The majority of staff and board members are parents of children with disabilities, so they are able to bring personal experience and expertise when working with families.
- 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.
- National Down Syndrome Society: The National Down Syndrome Society is the leading human rights organization for all people with Down syndrome.
- 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.
- 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.
- 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.
- Family Support Services Councils: The Family Support Services (FSS) Program helps families who are caring at home for a relative with a developmental disability by providing aid to the caregiver, enhancing family stability and preserving family unity.