A Big Problem - Out of the Shadows

Just six years after the institution opened, a headline announced “Care of Feeble-Minded Big Problem for Maine.” The facility already had 255 people receiving care, with 160 on a waiting list.

Clipping from 1914 Newspaper Article entitled "Care of Feeble Minded Big Problem for Maine" — Lewiston Evening Journal March 25, 1914

Dr. Carl S. Hedin, who took over as superintendent in 1912, said the “feeble-minded” still in the community were “harmful and dangerous … as they are able to reproduce their kind.” Their offspring, the theory went, would add to “feeble-mindedness, insanity, crime, pauperism, intemperance and prostitution” in the state.

Headline from August 4, 1917 Lewiston Journal: Maine Girl Makes the Training of Defectives Her Life Work. — Lewiston Evening Journal, August 4, 1917

Those beliefs and policies that followed them persisted into the 1940s, propelled by Social Darwinism and eugenics, ideas that grew out of increasing immigration, urbanization, and industrialization in the late 19th and early 20th centuries. Persons were “committed” to the institution, kept behind locked doors, and were unlikely to leave.

For the Maine School for the Feeble-Minded, those beliefs led to fear of and discrimination against people who were different – cognitively, ethnically, socio-economically – and to decades of committing thousands of disabled persons in Maine and elsewhere to large institutions, where some persons education and learned skills, but where many were provided only custodial care.

Theme Alert!

Money

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.

Waitlists

Waitlists have occurred since the very beginning of services. Many people who could benefit from services to live more supported and independent lives instead languish on waitlists.

In the past, superintendents of Pineland used the need of more beds as an excuse to call for a larger institution.

Today, waitlists for services are an ever-increasing problem. Children, despite a diagnosis can’t access the inventions that could change their lives and as a result, their needs often become so challenging that they end up in significantly more restrictive and costly placements than they would have needed if they had gotten the right service at the right time. Young people who have been supported through the school system can find themselves waiting years to access adult services. People in the disability field call this period “the cliff” when youth are without services and supports and many of the skills that they worked so hard to achieve begin to erode and their future feels like it might slip away. Adults who have services learn that they are stuck in poverty, single, or unable to move as their services may be at risk if they make to much money, get married or move. Life decisions that most of us view as our right can mean starting the process of securing services all over again, making opportunities to grow and be fulfilled as an adult also fraught with anxiety.