New Policy Directions - Out of the Shadows

The years while the lawsuit worked its way through the courts were marked by much upheaval and many changes at Pineland. In August of 1975, one month after charges were filed, George A. Zitnay was hired as superintendent – one year later he moved into state government as Commissioner of Mental Health and Corrections. In both roles, he called himself a “strong supporter of normalization” (Lewiston Daily Sun, October 16, 1975), and said that “the policy of the department has been to build up institutions while at the same time encouraging patients to move out into the community” and that the “state must use its resources to help those outside the institutions” (Lewiston Daily Sun, November 23, 1976).

Newspaper clipping from the Lewiston Daily Sun, November 23, 1976 – Headline: Zitnay Urges Improved Services for Retarded — Lewiston Daily Sun, November 23, 1976

Newspaper clipping from the Lewiston Daily Sun, November 23, 1976, continued – Headline: Services for Retarded Bid Continued From Page One — Lewiston Daily Sun, November 23, 1976

Policymakers also began to recognize that residents of Pineland and other State institutions deserved support to speak their minds about the conditions they lived in. An advocacy program was started in 1972 in the two mental health hospitals and expanded to the rest of the institutional system in 1973. In 1975, the legislature codified these changes by creating an “Office of Advocacy” in statute.

Text of 1975 Public Law Ch. 507 Establishing an Office of Advocacy for the Department of Mental Health and Corrections — 1975 Public Law Ch. 507 Establishing an Office of Advocacy for the Department of Mental Health and Corrections

Photo from the Lewiston Evening Journal, March 25, 1977 – Photo of a young woman sitting at a desk and smiling, with the caption: Susan M. Young — Lewiston Evening Journal, March 25, 1977

Newspaper clipping from the Lewiston Evening Journal, March 25, 1977, page 1 – Headline: Appoint Young DMHC Advocate — Lewiston Evening Journal, March 25, 1977

According to the Maine State Annual Report, in 1977 and early 1978, ahead of final negotiations that led to the end of the lawsuit and the beginning of the Pineland Consent Decree, many policies were beginning to be implemented in order to give Pineland residents more autonomy, choice, and opportunities, including creating an individualized program plan for each person, providing program services to 50% of residents, and giving 75% of residents a “private or semi-private bedroom area”.

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.

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