by Sharon Lewis, Principal Deputy Administrator, Administration for Community Living
In February 1963, a remarkable and fundamental shift began with President John F. Kennedy’s Special Message to Congress on Mental Illness and Mental Retardation (now called intellectual disabilities). President Kennedy envisioned a future in which, as he put it, the “reliance on the cold mercy of custodial isolation will be supplanted by the open warmth of community concern and capability.”
President Kennedy’s forward-thinking ideas resulted in the Mental Retardation Facilities and Community Mental Health Centers Construction Act of 1963, signed into law fifty years ago today. This ultimately became both the Developmental Disabilities Assistance and Bill of Rights Act and the Community Mental Health Act, and was the first piece of substantial federal policy that focused upon deinstitutionalization.
Five decades ago, it was common for people with psychiatric needs and people with developmental disabilities to live in institutions; many were excluded from their communities, separated from their families, and subjected to abuse and neglect. There were no expectations for a meaningful life—the assumption was that people with developmental disabilities or mental illness could only be passive recipients of charity and care, not active contributors to their family, community or society.
Thankfully, we have seen substantial change in the past fifty years, and the Developmental Disabilities Act (DD Act) is the foundation upon which those changes have been built.In 1963, children with disabilities did not have the right to go to school with siblings and peers without disabilities because the Individuals with Disabilities Education Act did not pass until 1975. People with disabilities did not have any civil rights protections until the Rehabilitation Act of 1973, with the Americans with Disabilities Act of 1990 establishing broad non-discrimination protections. There was no right to choose community living until the Olmstead decision in 1999. And, the last major bastion of legal discrimination was finally addressed in 2010 with the passage of the Affordable Care Act and the end of discrimination in health insurance coverage based upon pre-existing conditions.
Over the years, as the self-advocacy and disability rights movements grew stronger and people’s expectations and attitudes toward people with developmental disabilities changed, the DD Act and the work of the DD Network also evolved accordingly.
The programs established by the DD Act have worked to enhance the quality of life for people with developmental disabilities through increasing participation in the community; access to employment, housing, health care, and transportation; and freedom from abuse and neglect. The Developmental Disabilities Network has promoted the right of individuals to live, work and play as integral members of our communities, and to be able to make their own choices about their lives.
University Centers for Excellence in Developmental Disabilities have been an integral part of developing interdisciplinary approaches to diagnosis, service delivery, training and research; the focus of their work has evolved with the country’s expectations—from treatment in institutions to community-based services and supports that honor self-determination. The work of the State Councils on Developmental Disabilities has moved from coordination of services and supports to substantial systems change efforts, leading the way in ensuring that program and policy development is driven by people with disabilities and their families. And Protection and Advocacy agencies have grown to a system of entities that protect the rights of all people with disabilities, in a myriad of settings and circumstances, taking on important issues such as community integration and school inclusion.
Importantly, the self-advocacy movement has also evolved with the advances of the last 50 years, raising expectations as people with intellectual and developmental disabilities continue to fight for independence and the opportunity to live truly self-determined lives. No longer are our friends, siblings, spouses, sons and daughters with intellectual and developmental disabilities solely dependent upon families and allies to advocate on their behalf—they are speaking for themselves, and stepping up to lead us all towards better and more diverse communities through their contributions.
For example, in 1963, we would have never have seen stories like that of Jenny Hatch, the Virginia woman who fought for her right to make her own choices and live as she desires—living with friends in a real home, working at a job she chose, volunteering, voting, and riding her bicycle about town--supported by people she loves and who love her. Young adults like Jenny were not part of the fabric of our communities in 1963, and a case such as hers would never have seen the light of day. But so much has changed over 50 years, in no small part due to the efforts of all of the systems change work supported by the DD Act. Today, a young woman with an intellectual disability can stand up and speak for herself in a court of law--and win.
Fifty years after the signing of the first iteration of the DD Act, we honor the work of self-advocates, families, advocacy groups, policymakers, researchers and other stakeholders that has resulted in dramatically and positively changing the opportunities in this country for Americans with intellectual and developmental disabilities--people like Jenny Hatch. We can only imagine what fifty more years of effort will bring, as we continue to work towards the day that every American with a disability is a respected, beloved, contributing member of our society.
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Last Modified: 4/2/2014