Families in New York State have been the main drivers of change in developmental disability rights, with early advocacy ensuring basic rights that are still honored. Today, broader education and advocacy on those basic rights continues to be a critical need for families. In the beginning, families could not find educational and health services for their children. The result of this was a widespread movement of families who established services and programs specifically focused on supporting the needs of their children and family members.

Early advocates came together to educate government officials and community leaders about service needs, with many responding to clinicians and others who told them to place their children with developmental disabilities in state-run institutions. While some families believed what they were told, that their loved ones would be safe and well treated and the number of people in these institutions grew to exceed their capacities, conditions deteriorated and due to understaffing, the residents were often neglected and mistreated.

In the 1970s, a series of news stories about the terrible conditions in the Willowbrook State School and other institutions resulted in an agreement between New York and the federal government to move people out of large institutions and into their communities. For many years following the public outcry in response to conditions at Willowbrook, families, non-profit organizations and the State worked together to create a strong system of supports and services in New York.

Through the development of various programs funded by Medicaid and the State Education Department, families over many decades helped ensure that a strong system of services would be there for their loved ones with disabilities.

During that period, the Americans with Disabilities Act, passed in 1990, and the Olmstead decision (a lawsuit that is critical in defining the rights of people with disabilities) added to the protections and assurances that defined certain rights for people with disabilities to have access to, and ensure integration in, their communities. Unfortunately, while protections are in place and families have come to expect that a certain level of services will be available for their loved ones, in the past several years we have seen government funding reduced. In addition, federal and state reinterpretation of the rules and statutes has had a negative impact on the options available for people with disabilities.

Today, we find ourselves at a place where rejuvenated family advocacy needs to be our strongest weapon as we combat the assaults on the rights of New York’s most vulnerable citizens. This Web site is intended to help families understand their rights, the service options that are available to them, and how they best can advocate for all people with disabilities as well as for their family member’s specific needs.

Through this forum, we hope to help Educate, provide an opportunity for you to Communicate, and to empower you to Advocate on behalf of people with disabilities. Together we can reverse the trend of recent years and demand a renewed investment in the futures of people with disabilities.