When a Houlton group home resident became a danger to himself, his housemate and the staff members assigned to care for him late last fall, he ended up in the emergency room of Houlton Regional Hospital.
The man, who has an intellectual disability, remained there the next 39 days, until Jan. 18. Staff from the Community Living Association, the nonprofit that runs the group home where he lived, stayed with him at the hospital 24 hours a day.
“We don’t want housemates getting hurt and staff getting hurt,” said Rob Moran, executive director of the Community Living Association, which runs six group homes and two other facilities in Houlton that house adults with intellectual and developmental disabilities. “Both of those are the most important things to us.”
In the past, the Community Living Association could have relied on a state network of crisis beds for adults with developmental disabilities, instead of the local emergency room, Moran said.
But that network has largely fallen apart.
It’s lost at least two-thirds of its capacity over the past year, dropping from 24 beds to eight or fewer serving the entire state. The Maine Department of Health and Human Services still hasn’t restored the lost capacity, despite an October 2017 pledge from the agency’s new leader that it would.
Nowadays, when service providers like the Community Living Association approach DHHS with clients in crisis and none of the state’s few remaining beds is available, DHHS turns to other service providers in hopes that they’ll have an available bed. But many of those same service providers are closing group homes and struggling to hire and retain staff, so few have the ability to take on a client who’s behaving violently and potentially destroying property after a medication or other life change.
Health and Human Services Commissioner Ricker Hamilton told lawmakers last year that funds were available to restore the lost crisis beds and promised swift action.
“We need to move quickly on that,” he said on Oct. 20, 2017, during his legislation confirmation hearing to lead DHHS. “My intent is to move quickly on that.”
To date, however, DHHS hasn’t contracted with a new entity to provide and staff the beds the state lost when its last crisis bed contract with a private service provider ended on June 30, 2017. DHHS hasn’t even issued a request for proposals seeking contractors to take that organization’s place, according to service providers and a review of the state’s website that lists pending and past requests for proposals.
“The crisis system is in crisis. There is no question about it,” said Bonnie-Jean Brooks, president and CEO of OHI, a Hermon-based organization that runs 24 homes for adults with intellectual disabilities and is in the process of closing two. “And the crisis system is getting more demand than it ever has because they’ve eliminated the private homes.”
By law, the Maine Department of Health and Human Services is supposed to “maintain an adequate capacity” of crisis beds that people with intellectual disabilities and autism can use temporarily when they become violent or agitated, and pose a threat to themselves and those who live with and care for them. The crisis homes with those beds are supposed to offer specialized help as their temporary residents’ behavior stabilizes and they prepare to return to their living situation or find a new one.
They were one element of a system the state, facing legal action, started developing decades ago for serving adults with intellectual disabilities in their communities, instead of within the walls of the state-run Pineland Center in New Gloucester. Pineland, where people with cognitive disabilities were once involuntarily confined, closed in 1996.
With few crisis beds available, however, residents with behavioral crises are more commonly ending up in local emergency rooms such as Houlton Regional Hospital’s, according to the service providers who support them. And the unreliable availability of the remaining crisis beds when they’re needed makes some providers less willing to take on adults with potentially intense behavioral needs. Other providers say they try to get by without relying on the diminished crisis bed system.
“Sooner rather than later, we need to find a way to get more crisis beds in the system,” Moran said.
Sixty-four people required a stay in a crisis bed in fiscal year 2016, when the state had access to 24 crisis beds, according to the most recent available data from DHHS. Fiscal year 2016 ran from July 1, 2015, through June 30, 2016.
As of July 1, 2017, the state had lost 16 of the 24 crisis beds when Maine DHHS’ contract with an Augusta organization that provided and staffed the 16 beds ended. DHHS didn’t have another organization lined up to take over the contract, although the agency had been aware since December 2016 that the contractor, Employment Specialists of Maine, didn’t intend to continue providing the service.
A DHHS spokeswoman didn’t respond to questions from the BDN about why the department hasn’t entered into a new arrangement to provide crisis beds, the agency’s current arrangements for handling crises and the amount the department has spent to house adults with intellectual disabilities in hospital emergency rooms.
When DHHS approaches service providers to see if they can accept clients in crisis, providers say few of them can say yes.
“I don’t believe our agency currently has the capacity that would be required to do that, and we’re unable to offer people a pay differential that would maybe motivate more staff to be able to take a challenging role like that because of the rate situation,” said Jennifer Putnam, executive director of the Progress Center, a service provider based in Norway.
The rates group home operators receive today through Maine’s Medicaid program are lower than the rates they received in 2007. That has made it difficult for them to pay staff members charged with caring for adults with intellectual disabilities much more than minimum wage. Many report higher numbers of staff vacancies than they’ve ever had.
When a request for a crisis placement comes in, “we look at it, but it’s hard to look at it seriously due to staffing issues,” said Moran of the Community Living Association.
“You have to tell the caseworker, ‘I’m sorry, I wish we could do something for this person, but we can’t,’” said Brooks of OHI.
Without the 16 crisis beds provided by a contractor, the state is left with the four crisis homes it operates with state employees, which are located in Gray, Monmouth, Bangor and Presque Isle. Each has two beds, but the homes aren’t operating at full capacity due to staffing shortages and because they oftentimes can safely accommodate only one adult in crisis at a time, service providers say.
“We went from having 24 crisis beds to potentially four,” Moran said. “On the high end, it’s eight, but it’s more likely that it’s four. That’s a huge problem.”
Crisis bed locations
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The Presque Isle crisis home wasn’t available to the Community Living Association’s resident in crisis, Moran said, leaving the organization no safe option but the emergency room to wait for the crisis to de-escalate and for a caseworker to find another, safer residential placement for him with a different service provider.
Last year, when a Bangor-area group home operator, MERT Enterprises, had a resident in crisis who couldn’t safely remain at one of the organization’s 15 Bangor-area group homes, the resident spent more than 30 days in the Eastern Maine Medical Center emergency room.
Ultimately, no safe place was available for the resident in Maine; the only option was outside the state, said Mary Rush, MERT’s executive director.
Ann-Marie Williams, associate vice president for patient care services at Eastern Maine Medical Center, said the hospital has seen an uptick in the number of patients with intellectual disabilities and autism requiring extended emergency room stays. A few patients have remained in the emergency room for about a month; one patient’s stay exceeded a month, she said.
“I would say there’s a gap in the care, and that gap is a longer-term crisis bed, specifically for intellectually disabled individuals,” she said.
Patients in crisis remain in the emergency room because there’s no medical reason to admit them for an inpatient hospital stay, Williams said. But the emergency room isn’t equipped for long-term stays. There’s no shower, for example, and the staff changes at the end of each shift, which can be distressing to patients who thrive off consistency.
“We’re the emergency department, not a residence,” Williams said. The emergency room is “the most expensive place to receive care, or to be housed in,” she said, and the state’s Medicaid program is generally paying the bill for prolonged stays.
Maine Focus is a journalism and community engagement initiative at the Bangor Daily News. Questions? Write to mainefocus@bangordailynews.com.