Without enough crisis beds in the state, people with intellectual disabilities, such as Robbie Faloon, who has autism, have ended up living in emergency rooms. Faloon is pictured here at St. Mary’s Regional Medical Center in Lewiston where he spent 21 days last month. Credit: Courtesy of Sandy Davis

Long before the U.S. Supreme Court decided in 1999 that states are required to provide services that allow their residents with disabilities to live in their communities instead of behind institutional walls, Maine was well on its way to developing such a system of services.

Maine was developing it under court orders and phasing out the state-run Pineland Center in New Gloucester, which long housed, and mistreated, adults with intellectual disabilities.

When Pineland finally closed in 1996, Maine became one of the first states to fully deinstitutionalize. By 2000, only Maine, seven other states and Washington, D.C., had closed their state-run institutions for residents with intellectual disabilities.

Today, Maine is backtracking.

While the large institutions have closed, institutional stays have become more common for adults with intellectual disabilities. The emergency room is today’s institution.

It’s difficult to determine exactly how common emergency room stays have become for adults with intellectual disabilities who have lost their group home placements or been unable to use one of the state’s dwindling number of crisis beds in the midst of a dangerous behavioral crisis. The Maine Department of Health and Human Services has failed to produce data on the frequency of emergency room stays and their costs — for the BDN when it made a public records request in March; for the Maine Developmental Services Oversight and Advisory Board, which is specifically entitled to the information under state law; and to service providers interested in diagnosing problems with the state’s system of services.

But service providers, hospital officials and family members have all experienced an increasing frequency of such emergency room stays.

Twenty-year-old Kyle Roderick, who has autism, stayed in the Eastern Maine Medical Center emergency department for 35 days as he waited for someplace to go. The state’s ultimate solution was to send him to Florida — via a $19,000 air ambulance ride — for specialized care he should be able to receive in Maine. When his family members all live in Maine, it’s difficult to argue that a placement in Florida is a placement in his community.

Thirty-year-old Robbie Faloon, who also has autism, has had two extended stays in Maine emergency rooms over the past year, including over Christmas late last year. He’s out of the emergency room at the moment, but he still lacks a permanent placement in a group home. He’ll have to move again if one becomes available, and transitions are typically difficult for people on the autism spectrum.

While Maine spent decades building up a system to ensure its residents with disabilities could receive the services they need, that system has become strained to the point where it’s not fulfilling its obligation to Mainers with disabilities.

It’s an example of what can happen after a state makes a substantial investment in developing an infrastructure to serve its population, then takes its eye off the ball. Reimbursement rates for service providers haven’t kept pace with the costs of providing services, other sources of special types of funding have disappeared, and Gov. Paul LePage’s administration has simply allowed the state’s crisis services system — put in place to help people out in the midst of behavioral crises that are endangering them and those who live with them — to wither away.

Meanwhile, the number of people requiring some level of services has grown over the past couple of decades.

The state can make a substantial investment and build up an infrastructure for serving people in need. But that’s not enough. Such investments require maintenance over time.

Or else, history repeats itself, and the state exposes itself again to legal consequences for failing to serve some of its most vulnerable residents.

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