Maine has likely lost two-thirds of its capacity to safely house people with intellectual disabilities who are experiencing crises that put them and the people they live with in unsafe situations.
When people with disabilities become violent or extremely agitated — essentially a threat to themselves or others — they may need to temporarily stay in crisis homes, which are located across the state, and receive professional aid services to help them calm down.
Maine law requires that the state maintain “adequate capacity” to help people with disabilities who are experiencing a crisis and cannot safely remain in their own homes. The beds are in “short-term, highly supportive and supervised residential settings,” according to the Maine Department of Health and Human Services.
But recently the number of crisis beds has fallen dramatically.
As of June 30, the state officially lost all 16 of its privately run beds when a contract with Employment Specialists of Maine, an organization based in Augusta that offers residential and employment programs for people with disabilities, ended with no replacement. The organization did not continue the contract, it said, because it wasn’t receiving enough funding from the state to cover costs.
Historically there have been both privately run and state-run beds. But it’s unknown how many state-run beds are left because the agency in charge of them, DHHS, has avoided releasing information to multiple organizations that serve people with disabilities, an independent body called the Maine Developmental Services Oversight and Advisory Board, and the BDN.
In 2013, however, there were eight state-run beds, according to the last known report on the issue published by the department.
The loss of crisis beds has caused advocates to assert that DHHS is failing to meet its obligations set out in state law. Historically many people with disabilities were involuntarily confined at Pineland Center, a former state-run mental health institution in New Gloucester. The law essentially took the place of years of consent decrees through which courts required the department to ensure appropriate treatment of people with disabilities.
“Approximately 5,500 or 6,000 people have the right to crisis services,” said Richard Estabrook, who was the chief advocate in the Office of Advocacy from 1985 to 2012, monitoring people with intellectual disabilities and autism served by Maine DHHS. “If they do not have a residence in which they can live, the state has a responsibility for providing them a residence, and they don’t have the capacity to do that. That’s the crisis in crisis services that’s happening now.”
In addition to crisis beds, the state is supposed to provide a number of other services, including wellness checks to plan for future crisis situations, a 24-hour crisis hotline to provide information and field calls for assistance, and outreach help where workers go to the scene of a crisis to assist.
Providers, however, say the state is not sending workers when needed to respond to clients in crisis. Even if someone ends up in the emergency room, it’s not guaranteed that a state crisis worker will meet with the patient, said Bonnie-Jean Brooks, the president and CEO of OHI, a Hermon organization that serves people with intellectual disabilities and mental illness.
“At our own agency as well as others, that doesn’t happen,” Brooks said. “They don’t show.”
According to state law, DHHS is also required to issue a report at least once a year that contains information on crisis services for people with intellectual disabilities or autism, such as how many crisis beds exist. But this report, which is supposed to be made publicly available on the department’s website, has not been available since 2013.
There is no excuse for not providing public information about crisis services, said Zach Heiden, the legal director at the ACLU of Maine.
“It clearly opens up grounds for the Health and Human Services Committee to call the department in and ask where this information is, and I hope they will do that. This seems like … something the Legislature needs to demand answers about.”
Crisis services is one of the most “opaque” parts of the DHHS, according to minutes from a June 12 meeting of the Maine Coalition for Housing and Quality Services, where providers expressed concern about the lack of information available.
“Information regarding how many crisis beds there are, how many are provided by the state, and how many are provided by other agencies is not available. People are told to call the crisis number to see if there are services available, and often the answer is that they’re not,” according to the minutes. “Someone can talk to the person in crisis over the phone, but if that doesn’t resolve the issue the individual is left with no option but the hospital.”
Lydia Paquette, the executive director of the Maine Association for Community Service Providers, sent a letter to DHHS on May 26 asking how many crisis beds were available in the state, in addition to how many requests it was receiving for placements.
She received an answer on June 19 noting that the questions would be reviewed and answered, she said. She hasn’t heard back since.
The Maine Developmental Oversight and Advisory Board is supposed to receive information regarding crisis services — such as how many crisis beds there are, a count of when police intervention has been needed, and the number of emergency room visits resulting from crisis situations as well as lengths of stay — in order to ensure that DHHS is providing an adequate level of services. One of the reasons a court released the state from the terms of the last consent decree was because of the creation of the oversight board.
But the board, whose members are supposed to be appointed by the governor, hasn’t received the information in a long time, said Nonny Soifer, who has served as the board’s executive director since November.
“We have been formally requesting data from the state, in our capacity as the oversight and advisory board, that we by statute are authorized to see, and we haven’t been getting responses to that for an extended period of time,” she said.
DHHS spokeswoman Samantha Edwards did not respond to questions from the BDN.
‘They end up institutionalized’
The current system of services for people with intellectual disabilities came about after a lawsuit against Pineland Center in 1975.
A judge first ordered a consent decree in 1978, and again in 1994, to force the state to improve conditions, and support people’s health and safety in their communities.
A federal judge lifted the consent decree in 2010 when he found Maine had made a “largely successful effort” to achieve compliance and support people with disabilities outside institutional settings.
Now, however, it appears some people with disabilities in crisis are ending up in the emergency room because there is nowhere else for them to go.
“Ultimately, that’s what happens to people who have unmet needs in the community,” said Paquette, with the Maine Association of Community Service Providers. “They end up institutionalized; they end up in hospitals, in jails — anywhere where they can get some of those needs met, even if it’s more intrusive than necessary or causes other forms of crisis.”
David Winslow, the vice president of financial policy at the Maine Hospital Association, said that, at least anecdotally, the practice of sending people with disabilities to the emergency room has become more common. There are no statewide statistics on the matter.
Eastern Maine Medical Center in Bangor has seen an increase in patients with intellectual and developmental disabilities and behavioral issues in the emergency department, said Deb Sanford, the hospital’s vice president of nursing and patient care services.
“If there is no medical or psychological need for an inpatient hospital stay, there are often limited options for these patients and their families. Statewide, we recognize there is a lack of resources to manage these patients,” Sanford said.
The provisions of the consent decree originally required that the state maintain 24 crisis beds: 12 overseen by the state and 12 overseen by a private contractor. Current law requires that the capacity be “adequate,” without specifying a number.
As of 2013, the state still had 24 beds — 16 overseen by a contractor and eight overseen by the state. Employment Specialists of Maine, known as ESM, held a contract with the state to provide the 16 private beds.
In December, ESM announced that it would not renew its contract, due to cuts to state reimbursements for Medicaid services, said Jean Gallant, the president of ESM. She confirmed that ESM stopped providing the 16 crisis beds when the contract ran out June 30.
Multiple organizations that provide services to people with intellectual disabilities said that the state has not yet requested bids for a new contract to provide crisis beds, nor said when or whether it intends to do so.
‘The most experienced staff … could not handle him’
Due to low Medicaid reimbursement rates, community service providers say they are struggling to hire workers to staff group homes for people without major behavioral challenges, resulting in many group homes closing. But it is especially difficult to find workers to care for patients who may be violent toward others or themselves.
Paquette, with the Maine Association of Community Service Providers, has seen clients who have hit themselves repeatedly in the face until their retinas detached from their eyeballs, effectively blinding them.
“That’s really scary to work with someone and care about them and be trying to protect them and protect others,” Paquette said. “People just don’t want to do that for minimum wage.”
In another recent case, a group home took on a previously violent client only to discharge him back into the care of the state three weeks later because he hurt others, said Brooks, with OHI. The state brought him to the emergency room.
“He was headbutting people, injuring people, blacking eyes,” she said. “He’s broken bones in the past. He … was so violent that the most experienced staff in the agency could not handle him.”
Providers are paid a standard rate to care for each client, even if a client is especially difficult to manage and costs more to care for.
When reimbursement rates for providers were set in 2007, the state included a behavioral add-on, which allowed providers to receive reimbursement for extra costs incurred with hard-to-manage clients. The add-on was eliminated in 2008 due to Medicaid cost overruns.
If a client is destructive and causes $10,000 worth of damage in a residence, for example, providers can’t afford to pick up the bill, and the state won’t chip in to pay for it, Brooks said.
All of it means that providers simply don’t take on hard-to-manage clients, she said, because they can’t safely handle or afford them. Now, with the loss of 16 crisis beds, they worry even more about what will happen to people with difficulty fending for themselves.
“Providers,” she said, “have given up on crisis services.”
Maine Focus is a journalism and community engagement initiative at the Bangor Daily News. Questions? Write to firstname.lastname@example.org.