Oversight and Protecting Rights - Out of the Shadows

The U.S. District Court in Portland named a court master, David D. Gregory, to oversee the consent decree and monitor the state’s progress in reaching the deadlines and objectives to which it had agreed. Despite pleas from the administrators of the institution that they needed a $1.2 million budget increase to meet the requirements of the decree, Governor Brennan put $650,000 less in his 1979 budget than their request.

Newspaper clipping from the Lewiston Evening Journal, February 8, 1979 – Headline: Pineland Center didn’t receive as much as they expected — Lewiston Evening Journal, February 8, 1979

Neville Woodruff, the lawyer who represented Pineland residents in the lawsuit, threatened new suits against Pineland in early 1979, saying, “They are very far behind in three major areas – staffing, quality of programs, and staff training.” (Bangor Daily News, February 16, 1979) Court Master Gregory was critical of the lack of improvements at Pineland as well, saying in a March 1979 report, residents are “still just being kept. Life for them is purposeless. Some are locked into their living units…their access to fresh air is wholly dependent on the time and willingness of direct-care aides.”

Gregory’s second report in November of that year held similar sentiments. “Noncompliance is substantial and continuing…The environment in most residential and program areas is poor…Pineland does not provide anything close to the educational opportunities or individually planned programs promised by the decree.”

The administrators of Pineland shot back at the Court Master, claiming his report “clearly shows that the Master has abdicated his impartial judicial office and become an advocate for those who wish to close all institutions for the mentally retarded”. They objected to the “conclusion of the Master that Pineland Center must be closed”, saying, “Pineland Center is an essential element of the State of Maine’s system for the delivery of services to the mentally retarded….all person residing in the facility have been found…to be in need of the services available at the facility. In each case the State Court has certified that no less restrictive alternative is available which would offer a more suitable living environment.”

Newspaper clipping from the Lewiston Daily Sun, November 16, 1979 – Headline: Says New Report – Pinelands Not Close to Meeting Consent Decree — Lewiston Daily Sun, November 16, 1979

In June of 1980, Court Master Gregory recommended that the court retain control of Pineland for another two years based on his findings, but by November of that year, he reported that “Pineland Center is now taking seriously the community-placement needs of Pineland residents.” The problem was now, “not Pineland Center but a severe lack of suitable, often specialized homes, programs, and support services in the community.” His conclusions were that “the State has no system for collecting data relevant to decree compliance” and that there was a lack of “resource development” hindering placement in the community.

Pineland was released from court oversight in 1981, but the state did not meet the community provisions until November 1983. The court then ended its supervision of the decree, determining that the state was in compliance.

Newspaper clipping of the Lewiston Daily Sun, September 19, 1981 – Headline: Judge Ends Court Control of Pineland — Lewiston Daily Sun, September 19, 1981

Several pieces were in place to ensure persons with developmental disabilities – at Pineland and in the community – received appropriate services, lived in appropriate conditions, and were able to exercise other rights outlined in the consent decree.

A nine-member Consumer Advisory Board made up of parents or relatives of residents, community leaders, the Pineland advocate and chaplain, and residents or former residents – was charged with “evaluation of dehumanizing practices, promotion of normalization, and examination of violations of individual rights.”

Newspaper clipping from the Lewiston Daily Sun, November 19, 1983 – Right side of clipping has two black and white photos of people with developmental disabilities, on left one sitting on a stationary bike and on right two people next to a telescope, one looking through the eyepiece, with the caption: “Jimmy McGuigan, left, exercises while at right Skip Farrington, left, and Roger Raymond check out a telescope.” Headline: Their Goal: To Join Society — Lewiston Daily Sun, November 19, 1983

Each Pineland resident and person in the community had a correspondent – family member or an unrelated trained volunteer – to meet with them at least once a year, attend team meetings about their care and treatment, and report any problems to the Consumer Advisory Board.

A resident advocate at Pineland and advocates in each service region of the state were available to help with individuals’ concerns or issues and also try to assure their rights were not violated.

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?

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.

Study vs. Action

Systems are slow to change – when complicated policies are built over years based on societal assumptions and bureaucracies arise that give power to certain groups and leaders, the status quo is often seen as both better and easier than trying something new.

When faced with intractable systemic problems, the people who administrate those systems can be cautious in the face of calls for reform. A common step is to create a taskforce or commission a report to study the issue and bring back recommendations.

While careful evaluation of problems and potential solutions is important, much too often the movement forward ends there. Caring people with years of experience take months or years to develop detailed plans and recommendations, only to see those reports gather dust while policymakers argue over details and funding and implementation.

Here are some of the reports that have been funded by our legislature in the last few decades, filled with plans that have never been executed:

1973 – Report to the Appropriations Committeewith Recommendations to Adopt Basic Policies to Guide the Appropriation of State Funds for Social Services

1980 – Long Term Care Dilemmas – Perceptions and Recommendations

1996 – Report of the Assisted Living Task Force

1997 – Final Report of the Commission to Determine the Adequacy of Services to Persons with Mental Retardation

2003 – Roadmap for Change: Maine’s Response to the Olmstead Decision – Work Group for Community-Based Living

2008 – Final Report of the Blue Ribbon Commission to Study the Future of Home-based and Community-based Care

Workforce Crisis

The bulk of the labor that supports people with developmental disabilities has historically been done by “low wage” earners – high school graduates or those with associate degrees working for minimum wage or very close to it. In addition to “low wages”, society at large can view the job as low skilled and akin to “babysitting.” In addition to a lack of workers to fill the shifts and perform the vital tasks, those that are employed in this field often feel undervalued and overworked. Expectations are low – and services suffer as a result. People with developmental disabilities often don’t get the supports they need from the staff hired to serve them – and the behaviors and reactions that may occur with this lack of support can then lead to abuse and neglect, including an overdependence on traumatic interventions like restraint.

Good direct care providers are also promoted to “supervisor” roles without the training and skills needed to support direct care workers (as the skillset of the two jobs are not the same.) Of course, this assumption of the skills is simply untrue. The lack of value placed on those doing this essential work has led to labor shortages again and again.