by Sharon Lewis, Principal, Health Management Associates
Thirty years after President Reagan first declared March as Developmental Disabilities Awareness Month, how far have we come in ensuring the human and civil rights of people with intellectual and developmental disabilities (ID/DD), and how far do we still have to go? In recognition of March 2017 as DD Awareness Month, Sharon Lewis offers her insight on how we have engaged individuals with Intellectual and Developmental Disabilities and their families and what we should be doing in the future.
“My natural freedom.” — A young adult with intellectual and developmental disabilities, when asked what she wants in life.
In 1957, thirty years prior to this first declaration, the picture for individuals with intellectual and developmental disabilities (ID/DD) was bleak. Nearly 200,000 people with ID/DD were warehoused in overcrowded and unsafe institutions in the U.S. — many lonely and abused — and thousands dying prematurely. Others were growing up with families, but often without access to education, adequate healthcare, or employment. Parents had started to organize for change, but most people with ID/DD had few opportunities beyond the love of families who chose to shun the offer of institutional care and ignore societal bias.
Even with these seemingly insurmountable hurdles, there has still been much progress made to change the way we include individuals with ID/DD in our communities. In 1963 President Kennedy highlighted the needs of people with ID/DD and signed the first ID/DD legislation. This first step led to Congress passing multiple bipartisan civil rights laws including the Developmental Disabilities Assistance and Bill of Rights Act and the Individuals with Disabilities Education Act (IDEA), guaranteeing a right to education for children with disabilities. Federal Medicaid funding was made available for ID/DD institutional care in 1971, and in 1981 Congress authorized the first Medicaid home and community-based waivers to help people with disabilities remain with family and as part of our communities, resulting in over 25,000 people with ID/DD on waivers by 1987. Even with these efforts, however, over 162,000 people with ID/DD remained in large state institutions and nursing homes when President Reagan issued his first DD Awareness proclamation, stating “Americans are becoming increasingly aware that such disabilities need not keep individuals from realizing their full potential in school, at work or at home, as members of their families and of their communities.”
Fast-forward another 30 years to today in 2017, and we have a generation of youth and young adults who have grown up with legislation and supports that have made their participation in the community a foregone conclusion. Having their civil rights maintained under the Americans with Disabilities Act of 1990, they expect to be fully equal, participating members of integrated and interdependent communities. The Affordable Care Act of 2010 has guaranteed access to health coverage for a population who, by definition, live with pre-existing conditions, and increased support for Medicaid home and community-based services (HCBS). Nearly three-quarters of a million children and adults with intellectual and developmental disabilities now rely on HCBS, and the population of people with ID/DD in large institutions and nursing homes has fallen to about 60,000. Most Importantly, however has been the cultural shift in which there are few Americans left who do not count among their friends, family, neighbors, schoolmates and colleagues a person with autism, Down syndrome, cerebral palsy, epilepsy or another developmental disability. People with ID/DD are contributing members in communities all over the country.
Good progress, in just a few short decades. One generation, significant improvements but what will the next thirty years bring?
While we close out DD Awareness Month 2017, there are still many challenges and unmet needs. Over 200,000 people with ID/DD sit on waitlists for services, and tens of thousands live in poverty. Despite a desire to work, many people with ID/DD still struggle to get jobs, with less than a quarter of working age adults with ID/DD competitively employed. Thousands of aging family caregivers have little to no help, and worry what will happen when they are no longer able to support their family members. People with ID/DD experience bullying, violence, abuse, neglect and hate crimes; discrimination is still prevalent, and low expectations far too often the norm. Additionally, the primary day-to-day supports that help many people with ID/DD (as well as older adults and people with physical disabilities) to live at home and in the community, funded by Medicaid, are currently at risk of significant reductions and changes that may slow or stop the progress of the past 30 years.
We should be proud of the progress that we have made but there is still much to be done to ensure a future where individuals with ID/DD are fully integrated members of our communities. We have made the first steps of acknowledging disability as a natural part of our lives, and now is the time to begin planning for its presence as part of the normal aging and life process, not as an aberrant or unlikely process. As the page turns from March to April, let’s look forward to a time, hopefully soon, when awareness proclamations are no longer needed, access to supports and community can be relied upon, and all Americans with intellectual and developmental disabilities experience the promise of “natural freedom.”
Sharon Lewis is a nationally lauded expert in disability policy spanning home and community-based services (HCBS), education, employment, independent living supports, and person-centered services. She is also a busy mom of three wonderful daughters, including one with developmental disabilities, and host to two giant Newfoundlands.