In 1911, only three years after the Maine School for the Feeble-Minded opened, a visiting committee identified problems.
Among the findings: “Pupils” who did not fit the admission requirements were admitted, the facility was not functioning as a school, was too small, care was too expensive. It was the first of many investigations over the facility’s 88-year history.
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?
From the beginning of the institutional period, the cost of providing care for people with developmental disabilities was both the reason for building larger and larger congregate settings and an excuse for any evidence of neglect or poor treatment that came to light.
Throughout the history of Pineland you can see the frequent requests for more funding. When Pineland was closed a new pool of money was flooded into the community. This followed a series of cuts and the same types of pleas for additional funds that can be seen through the institutional period.
To this day, disagreements over the amount of funding put towards services plague this system. Reimbursement rates and workers’ paychecks, infrastructure and innovative care – the question of “how do we pay for this?” hangs over all the decisions made.