Facing the Cliff

Gregory Bush, Emeritus History Professor, University of Miami

After graduating from high school, young adults with intellectual disabilities face a steep cliff of neglect here in Maine as in so many other places in the nation. Their civil rights have been systematically ignored for far too long. Yet few of them – or their caregivers- understand the history or changing bureaucratic boxes that exist that all too often stifle their possible growth as human beings.  

I have become sensitized to this issue by the experience of my own daughter, a high functioning 32 year old, who is a feisty and assertive young woman yet on the autism spectrum. When I was in the process of bringing her home to South Florida from a special education oriented high school in 2007, I called many local organizations in the area looking for interesting programs.  I well recall one provider who told me that once this population had reached 21 years of age, they are all tired of school and don’t want more formal education; they merely wanted to watch TV - a key feature of many adult day care centers these days.  That attitude is all too prevalent which denies the rich texture of their unique qualities.  

The history of those earlier deemed “feeble minded” in the nineteenth century in Maine and the rest of the nation resulted in the creation various state institutions. In Maine’s Pineland, started in 1908, the record of insensitive abuses, simplistic stereotypes of those deemed different, state underfunding over time and eugenics assumptions became monstrously abusive.  

By the late 20th century, a wave of deinstitutionalization took place promoting a new reform style that focused on the rights of individuals and the sidelining of programs deemed segregationist in relation to the target population. Individuals with disabilities often either stayed at home or lived in group homes with inadequate programs.  

For many good reasons, we now live in this era reacting against the vast abuses of the institutionalization of young adults with intellectual disabilities. Yet I believe we have become confused between past abuses, our experience segregating and stigmatizing this population, alongside the desire to integrate them into the wider society while also providing job training. The result – from a state and national level as well - is a lack of focus on useful day programs to assist continuing education and the development of social skills for the target population after high school, notably in small town Maine. The result – is to consign so many to be isolated, “home alone” and so often to psychologically regress after high school.   

Congress passed the Individuals With Disability Act (IDEA) in 1975, ensuring that all children would receive free public education regardless of any disability.  Then in 1987, an amendment was passed that required special education allowing students access to general education curriculum possessed by other students.  Yet these folks often remain inadequately treated in terms of the diversity of their needs as it relates to their much needed social skills – while so much attention is placed on narrowly focused job training for individuals rather than small cohorts.  

These days the Centers for Disease control and Prevention estimates that autism spectrum disorders occur in about 1 out of every 68 children, and is more prevalent in boys than in girls. It’s a burgeoning social problem.  

One emerging answer by professionals has been to focus on what has been called Person Centered Planning - a process “directed by the person him/herself” that seeks to normalize differently abled folks within their communities, a good idea in theory. Yet in so many cases, notably in rural communities, how realistic has that turned out? Realistically, what kinds of community supports exist to allow for any kind of socialization or programs ? Few.  

I am convinced from my experience running an organization in Miami called Nature Links for Lifelong Learning that the natural world can be a uniquely powerful experiential fulcrum. Through gardening, cooking, videography, job training as well as the expressive arts post-secondary young adults with disabilities can be empowered to continue their journey to learn about the world around them while becoming more fully functioning local citizens.

  A number of parents in the mid coast area have brought forth a bill in the legislature to create a Task Force to study the needs and present programs (or lack thereof) to assist this post secondary population.  We urge legislators to give this issue the urgent attention it deserves.