The Maine Department of Health and Human Services doesn't have records indicating how many adults with intellectual disabilities have spent time in hospital emergency rooms in recent years. Credit: James Crawford | TNS

Maine has a responsibility to its residents with intellectual disabilities and autism to provide services in their communities, where they can be close to their families and participate in enriching activities.

But there’s a lot we don’t know about how well the state is doing its job.

Last summer, a federal audit found the state had failed to investigate the deaths of 133 people with disabilities who had died while in state care over a 2½ year period between January 2013 and June 2015. The finding from the U.S. Department of Health and Human Services’ Office of the Inspector General wasn’t automatically a sign that these 133 deaths were wrongful deaths. But the state’s failure to look into them leaves many open questions for which we still don’t have answers.

The federal audit also found the state Department of Health and Human Services was looking into only a small portion of the hundreds of allegations that adults with developmental disabilities under state care — either living in group homes or in their own homes with state services — had been physically or sexually abused. The state had referred few such cases to local district attorneys, in violation of state law.

Again, there’s no reason to think all of these allegations would have led to criminal convictions. The problem is that no one knows.

The Maine Developmental Services Oversight and Advisory Board is one piece of the state’s infrastructure for ensuring Maine residents with disabilities are receiving the services to which they’re entitled. The board must have the information it needs to conduct proper oversight, but the state hasn’t been sharing this information with the board. And Gov. Paul LePage hasn’t appointed members to the board for more than 1½ years as vacancies come up. So, a board charged with making sure a state agency is living up to its legal obligations has only five of the 15 members it should have under state law.

The board has still managed to function but much of its information has to come from the stories of those receiving services, their family members and the people who provide their services. There are no hard data to speak of.

One story that comes up again and again is the increasing frequency with which group home residents with difficult-to-manage behaviors end up in hospital emergency rooms for extended periods. This is the result of a lack of crisis beds, where residents experiencing behavioral crises can go when they’re a danger to themselves and others. But it’s also a result of a lack of capacity in Maine’s system of services for adults with disabilities. Those emergency room stays wouldn’t have to drag on for weeks if more group home placements were available.

The BDN requested data from the Department of Health and Human Services on this issue in March, asking for the number of emergency room stays in 2015, 2016 and 2017 by adults with intellectual disabilities receiving services from the department. It took the department more than five months to say the data weren’t available.

In fact, the state of the department’s record keeping on the topic is apparently so bad that DHHS’ general counsel told the BDN that any report the department could produce with data on emergency room stays would be “incomplete and inaccurate.”

It’s another example of information that should be available to state officials, service providers, the oversight board and others who care about state services for adults with intellectual disabilities.

It’s obvious that things need to improve, but without the hard data, it’s difficult to know the extent of what needs to be done. How much more funding is needed? How many more crisis beds are needed? What amount of additional group home capacity is the right amount?

A woeful lack of information and openness could be standing in the way of some of Maine’s most vulnerable residents getting the services they need — and to which they’re legally entitled.

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