Editor’s note: This is the third story in a series on the weak spots in Maine’s care for children with mental health challenges.
Gov. Paul LePage’s administration has taken the first steps toward creating a new kind of psychiatric facility in Maine for children and teenagers with intensive mental health needs, in a move that defies decades of state policy and at a time when community services are more difficult to access.
The administration last month released two sets of proposed rules that would govern psychiatric residential treatment facilities and how much the facilities’ operators would be paid to run them.
The early steps to set up these treatment centers — which would be a step down in restrictiveness from psychiatric hospitals — come at a critical juncture for Maine’s tenuous system of mental health services for children.
They follow two decades during which the state expanded the availability of mental health services that children could receive in their homes and local communities. Those years marked a decisive move away from using institutions to house children with mental illness, autism and intellectual disabilities.
But the range of available services in children’s homes and communities has contracted in recent years. And the state’s proposal for psychiatric residential treatment facilities is a step in the institutional direction.
Today, hundreds of children have been waiting months for services in their homes and communities to address their mental and behavioral health needs, despite a federal law that guarantees eligible children access to the Medicaid-funded services within six months of being screened for them.
Forty-two children are living at facilities outside of Maine receiving treatment they can’t access in their home state, according to recent Maine Department of Health and Human Services data.
And other children are stuck in psychiatric hospitals and emergency rooms because there’s no other place where they can stay safe and receive treatment. Meanwhile, others with mental illness are in the state’s youth prison, the Long Creek Youth Development Center in South Portland.
A lack of mental health services available where children live “creates just this vacuum where kids and families with longstanding mental health needs, they jump from nothing to the most acute [service], and then back out again,” said Dr. Sally Cooper, the medical director for child and adolescent psychiatry at Spring Harbor Hospital in Westbrook, one of Maine’s two privately run psychiatric hospitals. “It’s a terribly inefficient system, and it’s also just terrible care. It’s terribly costly.”
The state says it’s offering a solution to fill these gaps, and ease pressure on psychiatric hospitals such as Spring Harbor, hospital emergency rooms and Long Creek. It says these new facilities could also allow some children being treated out of state to return to Maine.
But for a change as significant as creating residential psychiatric facilities that would cost taxpayers millions of dollars per year to run — and whose establishment would run against years of court battles and legislative action to bring more help to children where they live — still little is known about the state’s plans.
It’s unclear at this point how many facilities there would be, how many children they would house, how long residents would remain there, and who would run them.
There’s also evidence that services provided in children’s homes and communities are cheaper and more effective than institutional care.
In an email to the BDN, Maine DHHS spokeswoman Emily Spencer said “any willing and qualified provider” could run a facility, and that the department doesn’t plan to seek one out through a competitive bidding process.
Ultimately, the organizations operating facilities would determine how many children to accommodate, Spencer said. The number would “depend on the individual business models of the providers,” she said.
‘Kids here for months’
When children have completed their treatment at Spring Harbor Hospital, there’s often no safe place for them to go.
They no longer need a hospital’s care, but they can’t go home to their families because they’re not equipped to keep them safe, and services can be hard to come by where they live.
One community mental health service that has disappeared in recent years is Assertive Community Treatment for children, a service designed to help children readjust to family life after a psychiatric hospitalization. The service involved a team of clinicians working at all hours with the child and family in their home.
The 330 residential treatment beds in the state for children with mental illness, autism and intellectual disabilities — which are distinct from the new facilities the LePage administration is proposing — often aren’t an option, either. They’re either filled or unavailable because the organizations that offer them can’t recruit enough staff at payment rates from the state that haven’t changed in about a decade. There’s also been a gradual decline in the number of such residential beds in Maine over the past decade.
“Hence, we have had kids here for months and months, and I would venture to say, even over a year,” said Mary Jane Krebs, the president at Spring Harbor and senior vice president of intensive services for the hospital’s parent organization, Maine Behavioral Healthcare.
The state is pitching the psychiatric residential treatment facility as that place where children could go for a short period after a psychiatric hospitalization, or in lieu of Long Creek or a hospital emergency room, according to a presentation state officials delivered in February to a number of organizations interested in the new facilities.
Krebs said Maine hospital officials, through the Maine Hospital Association, began discussing the psychiatric facilities with the LePage administration more than a year ago. Though it’s unclear how many facilities the state has in mind, Krebs said the hospital officials suggested smaller, regional facilities of 20 to 25 patients each.
The proposed rules the Maine Department of Health and Human Services released early last month offer the most complete picture yet of how such facilities would operate. But they don’t offer details about the state’s plans for getting the facilities up and running.
Spencer, the DHHS spokeswoman, said the department’s hope is that information included in its February presentation and the proposed rules “will guide providers in making an informed decision regarding whether to offer this service.”
The rules list the diagnoses that would qualify a child for admission into the treatment facility, including bipolar disorder, depression, schizophrenia, anxiety, conduct disorders that cause aggressive behavior, and personality disorders.
They note that clinicians must reassess children’s need for the facility’s care every 60 days, but they set no limit on the length of a child’s stay.
The rules also would allow facility operators to use seclusion and restraint to control situations in which children put themselves and others in danger. The facilities could use physical restraints as well as chemical restraints — drugs that temporarily restrict someone’s movement.
The state’s Medicaid program, MaineCare, would pay $485.72 per patient per day for medical and psychiatric care. That works out to $177,000, before room and board costs, if a child remains in the facility for a full year.
Patients would be under age 21; the proposed rules don’t set a minimum age.
“To think about that amount of money, what could be done in the home and community is far better than what could be done in an institution,” said Katrina Ringrose, children’s advocate at Disability Rights Maine, which has been a key opponent of the new facilities.
There are nearly 400 psychiatric residential treatment facilities in more than 30 states, according to the federal Centers for Medicare and Medicaid Services. The facilities would be the first of their kind in Maine.
But even the Medicaid agency that regulates the facilities has encouraged states to explore alternatives. In 2006, the agency awarded more than $200 million to nine states so they could test the effectiveness of treating young people who would otherwise be admitted to psychiatric facilities in their homes and communities.
Over the course of five years, the states found that the cost of providing home- and community-based services amounted to a quarter of the cost of treating children in the residential facilities, leading to an average savings of $40,000 per child annually.
The outcomes in the community were superior, too. Outside of the facilities, children reported improved behaviors and fewer symptoms related to their mental health challenges than comparable children receiving treatment in the residential facilities. They also attended school more consistently and had more stable living situations.
‘More places for children to get stuck’
A number of advocacy organizations and service providers have submitted feedback to the state on its proposed rules for the psychiatric facilities. Now, it’s the state’s responsibility to review the feedback and, potentially, revise the rules before issuing final versions.
Disability Rights Maine, which led a key lawsuit against the state in 2000 that prompted Maine to expand services in children’s homes and communities, and other organizations have called for a wholesale review of the state’s system for serving children’s mental health needs. It would be the first such review since 1997.
Rather than erect a new kind of secure facility, Ringrose said, the state should assess its existing residential treatment and psychiatric hospital capacity, and develop a plan for using it more effectively. It also needs to devote more resources to home- and community-based services, she said.
Those services are cheaper and, provided early enough, could prevent the need for more intensive care such as hospitalization or residential treatment. But they’ve become increasingly stretched in recent years as the state pays the same rate for them today as it did a decade or more ago when the services first came online.
A rate set in 2007 would have to be 24 percent higher today simply to keep pace with inflation.
“I think it’s a far better use of our resources to figure out, how do we support those programs to make sure they have what they need to support children?” Ringrose said.
Plus, without an investment in at-home services, Ringrose said, children leaving new psychiatric treatment facilities would have limited options for continued services.
“They can go home, but they can’t get access to home- and community-based treatment,” she said. “We’re just creating more places for children to get stuck because we’re not addressing the right issues.”
‘Nobody seems to be stepping up’
While some service providers see value in setting up a new level in the state’s hierarchy of mental health care for children, there appears to be limited appetite to operate such a facility.
“In my conversations with folks, I haven’t heard anybody really saying that they’re going to step up, and ‘we’re going to do this,’” said Stephen Merz, CEO of Maine Behavioral Healthcare. “I’ve heard several indicate that we believe it’s an important level of care that needs to be funded, but nobody seems to be stepping up from what I can tell.”
Maine Behavioral Healthcare hasn’t ruled it out, but it has for the short term, according to Merz and Krebs.
Part of the challenge is the startup cost, Merz said, since the state doesn’t plan to cover it. “These are not necessarily resources that are just sitting around somewhere in Maine, able to turn on quickly,” he said.
Plus, there’s resistance to taking on another behavioral health service when the state hasn’t adjusted funding for a range of others in years.
Stagnant funding makes it difficult to hire the staff needed for the state’s existing residential treatment beds, said Eric Meyer, the CEO of Portland-based Spurwink, which has 100 beds for children with mental illness, autism and intellectual disabilities across multiple facilities. Those beds are in less restrictive settings than the proposed psychiatric residential treatment facilities.
Of Spurwink’s 100 beds, the organization only has enough staff to keep 85 online, meaning even less capacity to serve some of the 42 Maine kids receiving treatment out of state and others in Maine who need services. Spurwink receives five to seven new referrals on a typical day, Meyer said — children the organization usually can’t accommodate.
“We could serve those kids today, all those kids out of state, if rates hadn’t remained the same for the last decade,” he said. “We can’t hire people.”
No ‘sustainability plan’
Two decades ago, Maine pursued the opposite path from what it’s pursuing today. Rather than build up its institutional capacity, the state worked for years to serve children in their homes and communities.
In 1997, a class-action lawsuit alleged that Maine was violating a federal Medicaid law that guaranteed Medicaid-covered children the right to timely mental health services.
At the time, children didn’t just have inconsistent access to help, the people who provided in-home services often had no training in behavioral health, said Jack Comart, litigation director for Maine Equal Justice Partners, which was involved in a later, related federal lawsuit against the state.
The case ultimately led to a state promise of more timely services, a stronger system for assessing children’s need for services, and the creation of a new class of trained behavioral health professionals to provide in-home services.
Also in 1997, policymakers were expressing concern that about 75 percent of the money the state spent on children’s mental health services was spent on psychiatric hospital stays and in residential treatment facilities — the most acute and expensive levels of care. Maine was hospitalizing children at twice the national rate, and dozens of children lived in out-of-state facilities.
Following the recommendations of a special task force formed that year, lawmakers passed legislation creating a more organized system of children’s mental health services. The system included local networks of service providers and a state-level “gatekeeper” to keep track of kids waiting for services and to ensure providers only offered services deemed medically necessary.
Lawmakers also set aside funding to start alleviating waitlists for in-home behavioral health services.
A second lawsuit, filed in 2000, obligated the state to further expand the availability of home- and community-based services. Waitlists shrank over time, as well as the roster of children placed outside of Maine.
“It requires resources. We asked for and received additional resources from the Legislature to implement the strategies we’d identified to meet the requirements in the lawsuit and the strategic plan,” said Lynn Duby, who served as commissioner of the Department of Behavioral and Development Services in the final years of Gov. Angus King’s administration.
The state ultimately developed the infrastructure to serve more kids in their homes and communities. But policymakers paid little attention to maintaining the system.
Lawmakers included no mechanism to adjust reimbursement rates to keep up with inflation. More recently, the LePage administration has recommended cutting rates for a number of services.
“You do the difficult work to build them and put them all in place, and it’s exhausting, and it’s hard,” said Meyer, the Spurwink CEO. “But if you don’t have a sustainability plan for it, you end up back where you were, and that’s where we are today.”
Maine Focus is a journalism and community engagement initiative at the Bangor Daily News. Questions? Write to mainefocus@bangordailynews.com.