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 Credit: Courtesy of Sandy Davis

The Maine Department of Health and Human Services has no public records detailing how many adults with intellectual disabilities and autism have spent time in hospital emergency rooms.

Such emergency room stays have become more common as the number of state crisis beds available to adults receiving state-funded services has dropped by more than two thirds in recent years, and as those who have been able to use those beds have generally stayed in them for extended periods due to a reduced number of available group home placements.

Maine law requires that the state “maintain an adequate capacity” of crisis beds — temporary placements where people with disabilities can go when they’re experiencing behavioral crises and can’t safely stay in their homes or group homes.

But the state last year lost 16 of its 24 crisis beds when it allowed a contract with an outside service provider to lapse. Maine DHHS has yet to restore the lost beds, despite a pledge last fall to “move quickly” from former Commissioner Ricker Hamilton, who left his job last month.

The Bangor Daily News recently reported on the stories of two men with autism who spent extended periods in the emergency rooms of Eastern Maine Medical Center, St. Mary’s Regional Medical Center and Houlton Regional Hospital last year and earlier this summer. In the case of Kyle Roderick, who spent 35 days in EMMC’s emergency department last summer, the state ultimately paid to fly him to a service provider in the Tampa, Florida, area because no placement was available to him in Maine. Roderick remains in Florida today, more than a year later.

[The ‘complete nightmare’ of 2 men who lived in Maine emergency rooms]

The BDN requested public records March 12 from DHHS on emergency room stays by adults who qualify for state-funded disability services and the associated costs of those stays.

DHHS is generally paying the bills for such stays through MaineCare, the state’s Medicaid program. Also, group home operators responsible for the care of adults with intellectual disabilities have to report emergency room stays to DHHS as critical incidents, said Lydia Dawson, executive director of the Maine Association of Community Service Providers, which represents group home operators and providers of other services for residents with disabilities.

In addition, DHHS staff are also involved in finding permanent residential placements for adults who spend extended periods in emergency rooms.

However, DHHS has no records that would indicate how many such stays have taken place in 2015, 2016 and 2017 — the years for which the BDN requested records.

DHHS staff “realized that [they] did not have any reports which would provide this data,” Kevin Wells, DHHS’ general counsel, wrote Thursday in an email. “And, moreover, while they could attempt to create a new report, their source data was limited and therefore any such report would be an incomplete and inaccurate response to your requests.”

The lack of records is another example of a lack of oversight over Maine’s system of services for adults with intellectual disabilities, Dawson said.

“If we created a system of oversight and a system of standards and a system of reporting, we would be able to look at last year’s data and say, ‘We didn’t meet the need last year, so let’s increase resources to meet the law,’” she said.

Maine Focus is a journalism and community engagement initiative at the Bangor Daily News. Questions? Write to mainefocus@bangordailynews.com.