Office for People With Developmental Disabilities

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Parent Advocacy

05/31/12

The Office for People With Developmental Disabilities (OPWDD) recognizes the importance of information sharing and networking among parents. We also recognize that parents sometimes do not have the supports needed or know where to turn to get direction and guidance.  Assisting family members in making life decisions regarding things such as employment, housing, recreation and leisure, or other life decisions that may involve risks or consequences can be daunting.

OPWDD wants to be sure that parents are connected to the many parent groups that exist in New York State. Within these organizations are parents that have experienced very similar circumstances and are willing to share their experiences. There is also a vast array of training opportunities to help parents become better equipped and effective in advocating for their children. These would include, but are not limited to, transition to adulthood, service coordination, special education, adult service providers, Special Needs trusts, living wills and guardianship, durable medical equipment, and legal issues. Most of these organizations and groups (if not all) are run by parents of children with disabilities. They are staffed by professionals who can provide assistance to families or guide you to other advocacy groups that will be able to answer your questions. 

 These agencies are:

  •  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 (physical, cognitive, behavioral, and emotional).  Parent Centers provide a variety of services including one-to-one support and assistance, workshops, publications, and Web sites.  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. Visit the membership section of their website to access a local office.  
  •  National Down Syndrome Society  – The National Down Syndrome Society (NDSS) is the leading human rights organization for all individuals 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 nationwide network of Affiliates.  Office for Persons with Developmental Disabilities (OPWDD) recognizes the importance of information sharing and networking among parents. We also recognize that parents sometimes do not have the supports needed or know where to turn to get direction and guidance.  Assisting family members in making life decisions such as employment, housing, recreation and leisure, or other life decisions that may involve risks or consequences can be daunting.