In 1996, Maine closed the Pineland Center, its institution for people with intellectual disabilities or autism. A community-based system of care replaced it. In 2010, the federal court that had overseen the closure of Pineland and the development of community care ended its supervision. Attorney General Janet Mills in good faith assured the court that services were sufficient, and that mechanisms in the form of laws, regulations, policies and independent oversight were sufficient to protect these vulnerable citizens. Twelve years later, the system of care is in tatters.
What happened?
Maine imposes strict price controls on what it pays providers. When costs for labor, insurance and maintenance invariably rise, providers cannot pass on the increased costs, or even try to negotiate higher payments. Instead, they are forced to make the decision to leave the business. By one count, more than 40 group homes in Maine closed between January 2021 and May 2022. In July, the state’s largest nonprofit mental health care provider announced it would close its 29 group homes in Bangor and Belfast by the end of the year, affecting 45 residents.
This creates a vicious cycle. With rising demand but insufficient incentives to develop new services, more and more people are forced upon a system of care that has less and less overall capacity. The work force that now provides services is subjected to even more pressure. Maine does not reimburse overtime. Existing staff must put in 50 or 60 hours a week. People leave for better working conditions and higher wages at less demanding jobs. In order to survive, the providers that remain sell the real estate that houses the people they serve, consolidating homes and increasing the number of people living in each home. The available housing stock decreases exactly when more homes are needed.
New people graduating from high school are put on waitlists. When the first waitlist was implemented in 2009, there were approximately 20 people awaiting services. Now there are more than 2,000 people on that waitlist. Time on waitlists has increased from months to years. Even if people could get off a waitlist, there isn’t enough staff to serve them. Most people on the waitlists have no reasonable hope of ever receiving those services any time in the foreseeable future. To access residential services, the person must be in an immediate crisis of abuse, exploitation or neglect. The system lurches from individual crisis to individual crisis.
Every parent with a disabled child, even those who now receive services, worries: What will happen when I am gone? With no institution, the state was supposed to provide crisis services; in fact, Maine law requires the state to provide comprehensive housing and intervention services during a crisis.
What happened to that? Through regulation, Maine has interpreted the law to require the crisis services be provided only to the extent that existing resources allow. The existing crisis “system” is excessively overburdened, but there is no legal recourse for those who need crisis services, because all existing crisis resources are already utilized. As a result, people too often are relegated to stay in hospital emergency rooms, sometimes for weeks, untreated.
What about independent oversight of the system?
When federal court supervision ceased in 2010, a 15-person citizen review board, appointed by the governor, was created to provide ongoing oversight. The board is legally entitled to receive information from the Department of Health and Human Services to carry out its functions.
However, the past two administrations have ignored their responsibility to appoint new members to the board. There are only four officially appointed members, and they remain only because no one has been appointed to replace them. The DHHS has a legal duty to maintain adequate records to permit monitoring and accountability, but its information tracking system is so antiquated that it cannot produce basic data, such as how long people have languished on waitlists, or what has happened to the people whose group homes were closed. Under these conditions true oversight is impossible.
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