Bring In The Outsiders

I have written several times (like here) in this blog about the need for all of the stakeholders in the DD world to work together in order to find some solutions to the many problems facing our system right now. I am convinced that we do not know the extent of our problem because our system of design is so fractured. We do not know of better, more economical service designs, or what would it would cost to address the needs of those with intellectual disabilities.

A lack of coordination between stakeholders has led, in my opinion, to small solutions – solutions that are focused too narrowly to bring about much needed systemic reform.

But I need to add a caveat to that statement, one that may not be popular but that I think needs to be stated anyway: I’m not sure that DD system stakeholders are in the best position to design new solutions.

Why do I say this? Well, sometimes stakeholders are a little too close to their own personal situation to be able to step back and see the bigger picture. Digital time keeping wasn’t a product of Swiss watchmakers. Stakeholders draw attention to the need and communicate personal knowledge and experience. Stakeholders will move society to answer the question, “Are we going to support the needs of citizens with disabilities?” Someone else, who has the curiosity, but not a direct interest, will answer the question, “How are we going to support the citizens?” Just as the US Olympic Bobsled Team’s hope for gold medals is supported by NASCAR.

A close examination of the history of services for individuals with developmental disabilities in our nation supports this opinion. It seems as if the real changes have generally come not through the efforts of stakeholders, but rather because of outside influences, such as the academic world or journalistic exposés.

Want a couple of examples? How about the case of Willowbrook State School? Willowbrook was a state supported institution for people with developmental disabilities (although that’s not what they were called back then). According to the Arc of Massachusetts website linked above:

By 1965, with over 6,000 residents in an institution planned for just 4,000, Senator Robert Kennedy was calling Willowbrook a “snake pit.” In November 1971, a local newspaper, The Staten Island Advance, published a series of articles detailing the horrible conditions at the school.

Following these articles, in 1972, WABC-TV in New York sent rookie reporter Geraldo Rivera to Staten Island to infiltrate the Willowbrook State School. Rivera gained entry using a stolen key and documented the brutal and horrific living conditions of its residents, which included both children and adults. The resulting documentary, "Willowbrook: The Last Great Disgrace" won a 1972 Peabody Award and prompted an immediate government inquiry.

The public revelations of the institution’s squalid conditions gained national notoriety and opened the door to legal action, resulting in the signing of a consent judgment in federal court in 1975.

Clearly we have made giant steps of improvement. Yet citizens and families still lack the wraparound support suggested in the clip above, even though it dates back to the early 1970s. Change is still demanded.

Or how about the research of Frank Rusch at the University of Illinois? According to Wikipedia, his work . . .

included testing a model of supported employment that became the preferred approach for individuals with disabilities in the United States. Widely recognized as responsible for the birth of supported employment as an alternative to sheltered employment, Rusch and his students influenced the way special education and rehabilitation funded training, evaluation and long-term employment in this country. Over a five-year period, Rusch and his students helped start over 125 supported employment programs in the states of Illinois and Kansas. These demonstrations led to over 100 publications by his students between the period beginning 1987 and ending in 1994.

And there are countless other historical examples.

Even today, outsiders are being shown to be extremely beneficial in giving a fresh perspective on issues that those of us on the inside are struggling with. Recently, the Colorado Division of Developmental Services asked the University of Maine to assist in defining appropriate safeguards and protections related to potential conflicts of interests arising from the multiple roles of Colorado’s community centered boards. While I would argue that the university was given the wrong set of questions to study (that’s a topic for a later post), I don’t argue that the report the institution produced was thorough and thoughtful response to the questions they were asked to examine.

So it makes sense for all of us inside the support system for intellectual disabilities to consider looking outside the system for help in solving some of our biggest issues. Would we fear some of the solutions we might be presented with if we do so? Possibly, probably even. Should we fear solutions we might be presented with if we do so? No. Not if we really want to discover legitimate, long term solutions for system reform in our field.

Then again, what do I know?