Beginnings of Community Care - Out of the Shadows

With public and policy sentiment turning towards the idea that people with developmental disabilities deserved the right to care in their communities and a full life with control over their choices, a new system needed to be built from the ground up.

Since the 1970s, boarding and foster homes focused on people with developmental disabilities had started popping up, but they were often plagued by a lack of oversight that led to abuses similar to what people endured in institutions. A lack of vocational and habilitative services also meant that while people might have housing, they didn’t have opportunities for full lives with interesting activities and connections to others.

Many parents complained of the “dumping” of Pineland residents, some going as far as to suggest that Pineland was better than the alternatives.

Newspaper clipping from the Lewiston Daily Sun, August 31, 1982 – Headline: Medicaid Funds for Foster Homes Sought — Lewiston Daily Sun, August 31, 1982

Another issue that arose at this time was that of “institutional bias”. Because of the way that Medicaid funds are given to states to pay for services for people with developmental disabilities, any services provided in the community must be funded through a waiver – in short, institutions are still the norm, and community care must be given as an exemption. This bias continues to this day.

Across the country, states were struggling with deinstitutionalization both for people with developmental disabilities and those with mental illness. The new system of community services developed slowly, in stops and starts, and issues of underfunding and lack of staffing continued. But despite the flaws, people with developmental disabilities began to have options for life outside of Pineland.

Clipping from 1989 Maine Department of Mental Health and Mental Retardation Report — 1989 Maine Department of Mental Health and Mental Retardation Report

Theme Alert!

Institutional Bias

It is easy to assume that institutions are the right place for people with significant needs – in an institution, the assumption is that we can keep them “safe”, provide all the care they need in one place, and people with disabilities can live with “people like them”. These assumptions were worked into the policies and laws until the systems and the biases were intertwined and interchangeable.

Despite the evidence that institutions do not provide better care, a more stimulating environment, or less expensive treatment options than the community, our systems still reflect the historical assumptions that built them. When asked if people would like to live in the community they sign a waiver from their right to an institution. The “institutional bias” is imbedded within the current waiver system – how most people with developmental disabilities access services – makes getting good and services in the community harder. For that matter, the “institutional bias” includes an unwritten value statement that people with developmental disability do not have a natural place within the community. But is that true? Doesn’t everyone have a place?

More troubling still, many organizations are beginning to look towards building new institutions, using very similar language to that of the early 1900’s. They point towards the failures of the community system as proof that we need large congregate settings for people with developmental disabilities.

What are the assumptions here?

Values Check

Who and what do we value in our society? How do we determine someone’s “worth”, and whether they are deserving of help when they need it? Are all people really equal – and do we treat everyone as equally human?

People with developmental disabilities were sent to institutions because they were seen as useless or even dangerous to society. Their value in a place like Pineland rested on their potential for being trained to do menial labor – a Pineland resident could potentially get a furlough or even release from the institution if they could show that they could work.

In general, people with developmental disabilities throughout our history have been dismissed, patronized, and dehumanized. Doctors assumed that people with developmental disabilities didn’t feel pain, caretakers believed that they did not need friendships or hobbies or someone to communicate with, and society saw them as dangerous and unfit.

There were also people and moments in history that shifted our assumptions about the value of people with developmental disabilities – President Kennedy’s experience of loving his sister with disabilities led to huge policy shifts that impacted people with developmental disabilities across our country, and the brave self-advocates who organized a civil rights movement led directly to another president signing the Americans with Disabilities Act.

The question must be posed, what is the value of all potential members of the community, with or without disability, to the very health and fiber of the community?