When Tracy M.’s 7-year-old son became hyperactive and aggressive after being placed on 21 different ADHD medications over two months in 2007, it was clear he needed help his mother and her partner couldn’t provide. The boy had become combative, Tracy recalled, and his behavior was erratic and violent.
“He was very aggressive because the medications were working against each other,” she said. “He would hit, he would bite, he would kick and throw TVs.” The boy spent two months in a hospital inpatient unit. Then, he was transferred to the Acute Residential Treatment Center — known commonly as ART — at the Providence Behavioral Health Hospital in Holyoke.
At ART, specialists worked with her son, said Tracy, whose last name is being withheld to protect her children’s privacy. Children in the program earned “points” that translated to special privileges; for Tracy’s son, privileges included the opportunity to go home one day each weekend.
“I stuck with what they were doing because if I hadn’t, things would have gone back the way they had been,” she said, adding: “Now he’s totally different. He still has a learning disability, but overall he’s doing much better.”
Several years later Tracy’s older son, then 14, was also placed in ART. The teenager was having severe mood swings, and said he wanted to kill himself.
“They worked so hard with him that it was amazing,” she said of her eldest son’s experience with the staff at ART. “For a while he showed aggression, but they showed him how to go from that down to relaxation. He even talks about it now, how it helped him cope.”
Full-time placements for children with serious behavioral health needs are often hard to find in the Valley. And now, it’s even harder: Providence Behavioral Health Hospital shuttered its ART program at the end of 2014. The closing means there is no acute residential program for children in most of Western Massachusetts, from Pittsfield to Worcester.
Providence Behavioral Health Hospital still maintains a 24-bed secure inpatient unit for children — the only one in Massachusetts west of Route 128. There are no plans to close that unit, said Mark Fulco, senior vice president of strategy and marketing for Sisters of Providence Health Systems, which operates Providence Behavioral Health Hospital. But ART, which started in 1992 and at maximum capacity served 21 children ages six to 18, was a useful transition for children ready to leave the locked unit but not yet ready to go home. It also kept some children from having to be placed in the locked unit. Unlike secure inpatient units, acute residential treatment programs allow clients who exhibit good behavior to visit home or take trips outside the facility. Some children enrolled in acute residential programs even attend their regular schools. Within the units, however, children are supervised 24 hours a day and receive intensive therapy.
Tracy said she is concerned about ART being closed and the scarcity of similar services in this area.
“There’s going to be more suicide and more drug involvement with these kids,” she said. “The kids are going to feel worthless because there’s no one talking to them every day.”
Behavioral Health Network, a Springfield agency with close ties to Providence Behavioral Health Hospital, is developing an acute residential program for children to be opened later this year. Behavioral Health Network CEO Katherine Wilson said her agency is currently preparing an application for a license for the program, which will take nine to 12 children, and is “in the throes” of renovating a residential property it owns in Springfield to house it.
There were nearly 5,000 admissions last year to child and adolescent inpatient psychiatric units in Massachusetts (the figure is not an exact tally of cases because it includes readmissions of the same children during the year). Before being admitted as inpatients, children who are extremely aggressive or depressed or who harm themselves are usually reported to local emergency services or brought to emergency rooms. In this stage of crisis, they are not put on waiting lists and sent home, but kept in safe places until an inpatient bed is found for them. So a crucial metric for assessing the adequacy of inpatient space available for kids in psychiatric crisis is the number waiting in emergency rooms or on pediatric floors, and the length of time they have to wait.
Mental health care, including behavioral health care for children, tends to follow the flow of money — public as well as private. In Massachusetts, the preferred model of care has shifted in recent years to community-based programs that keep patients in their own homes during treatment. A flood of state spending since 2008, under the Children’s Behavioral Health Initiative, has accompanied that shift. Community-based programs are also cheaper to run than inpatient and residential services, which employ workers 24 hours a day.
Emphasis on community-based programs stems, in part, from the outcome of a class action suit originally filed in 2001 and now known as Rosie D. v. Romney. The plaintiffs were children receiving Medicaid who were confined to inpatient facilities when they wanted to live at home, supported by home visits each week by mental health workers. In U.S. District Court in Springfield in 2006, Judge Michael Ponsor ruled that the state was obliged to provide such community-based services to help these so-called “stuck kids” function outside institutions.
In his ruling, Ponsor wrote that the plaintiffs “offered credible evidence” that in-home behavioral support services were a medical necessity for potentially thousands of Medicaid-eligible children with serious emotional disturbances. But in most cases, Ponsor ruled, the state failed to provide adequate in-home services.
“The result of this failure is that thousands of Massachusetts children with serious emotional disabilities are forced to endure unnecessary confinement in residential facilities …” Ponsor wrote. “The shortage or inadequacy of in-home support services often results in removal of a fragile child from his or her home.”
The settlement agreement of Rosie D. vs. Romney birthed the Children’s Behavioral Health Initiative — an interagency program described in state budget documents as providing “comprehensive, community-based behavioral health services to children suffering from severe emotional disturbances.” At their best, community-based programs involve the family in a way that inpatient and residential programs may not, keeping the child connected to the world outside a treatment center. But children who are extremely aggressive, in the grip of a suicidal impulse, or so addicted that they steal from their families to buy drugs and are at risk for overdosing, may be too much for parents to handle with no more than a few hours’ support each week.
“A DCF [Massachusetts Department of Children and Families] worker was at my house one day, and my younger son went out of control,” Tracy recalled. “The DCF worker didn’t know what to do. He had to call his supervisor. These people talking about going to people’s houses for an hour and changing these kids — it’s not going to happen.”
The question arises, then, as to whether the political and financial pendulum has swung too far from inpatient and residential programs.
In 2008, when the Children’s Behavioral Health Initiative and related programs were established to carry out the Rosie D. mandate, state legislators approved over $7.5 million in funding for the initiative. The appropriation grew to nearly $20 million the following year — and, for each fiscal year beginning in 2011, legislators have approved over $200 million in funding. During that same period, providers of inpatient care for children have found themselves contending with nearly stagnant reimbursement rates from public agencies and private insurers — rates that covered around 75 percent of cost in 2010, and approximately 80 percent today.
Citing low reimbursement rates among other causes, last year, officials at Cambridge Hospital announced they would eliminate 11 psychiatric beds for children. But the state Department of Public Health stopped the plan, and the Legislature passed a special budget amendment that saved the beds. And according to the Massachusetts Association of Behavioral Health Systems, the number of psychiatric beds for young children and adolescents decreased over the last five years from 310 to 230 — fewer than one-tenth of the 2,431 psychiatric inpatient beds in the state.
“I think the state needs to figure out what is needed, especially for autistic kids, for violent kids,” said Massachusetts Association of Behavioral Health Systems executive director David Matteodo. “They don’t fund the inpatient units adequately, especially for kids.”
But Fulco said that the closure of the ART program “was not about a shift in funding.” However, he added, “We do have to make choices in terms of resources. Our doctors, our staff, our board of directors were involved in an ethical decision-making process. We reached the conclusion that the children would not suffer. Our clinicians said that type of service would be available elsewhere.”
Massachusetts is not alone with this problem. At Connecticut Children’s Medical Center in Hartford, the number of emergency room visits by children needing psychiatric treatment rose from 652 in 2000 to 2,490 in 2013. In 2000, no child boarded more than two nights in the emergency room there; in 2013, 245 did. One local press report described children sleeping on stretchers in a hospital corridor with their parents nearby on Barcaloungers.
Psychiatric hospitalization for a child is expensive — 50 percent again as expensive as hospitalization for adults. That’s because more staff are needed to care for children, and because children have to carry on with their education. Classes have to be conducted for them in the hospital, while those who are judged able to attend their district schools — like some in the Providence ART program who were responding well to treatment — have to be transported there. Hospitalization for children may cost $10,000 a week, while community-based service, which might involve two or three weekly visits by mental health workers to a child living at home, costs $1,000 a week or less.
In a message to workers announcing the closure, Sisters of Providence noted that “the ART census level has been consistently low, and there has been no increase in demand for some time.” Fulco said, “Over the course of at least the past year or 14 or 15 months, the census dropped pretty precipitously.” At times, according to a press release announcing the closing, the program — which served as many as 21 children at its peak — was treating as few as five patients.
But the suggestion that there is a lack of demand for a program like ART is at odds with what others who deal with children in crisis say. Placement for those children is not easy to find in the Valley, according to local child psychiatrists, and there are times when community-based services just can’t replace 24-hour care.
“I’m sorry to see the program go,” said Dr. Schuyler Whitman, a child psychiatrist practicing in South Deerfield. “I thought it was a good program. There’s a dearth of programs for children and adolescents.” Such programs are needed, Whitman added, “when [children] are too sick to be taken care of at home. When there is suicidal behavior, suicidal thoughts that you’re concerned about, mood swings that are increasing and that don’t respond to medication. Addiction services for youth are also hard to come by.”
Child psychiatrist Dr. Shoshana Sokoloff of Amherst listed suicidal thoughts, self-harming behavior, intense anxiety, and psychosis as conditions that require acute residential care. “We always work with therapy, medication, and family support, but there are many situations in which a facility like that, close enough to where the family lives, can be so very helpful,” she said, adding that the lack of acute residential programs for children is not unique to Western Massachusetts.
The Brattleboro Retreat, just over the border in Vermont, has long been a resource for children and adolescents from Massachusetts in need of acute care. Officials there told the Advocate that they have noticed only a slight drop in demand during the last few years. In Pittsfield, the Brien Center operates a very small program — only eight beds — for children in crisis. Brien Center spokesman James Mucia said demand for beds for children in crisis is always cyclical, with reductions in the summer. However, Mucia said that over the last year the Center has been “swamped” with demand.
So, what lies ahead for children in the Valley with acute psychiatric needs and their families?
Mucia said there is already a crisis with children in need of acute treatment waiting for placement. “Kids are in an emergency room for days,” he said.
Tracy M. and her son experienced firsthand the kind of wait Mucia said many endure. “We were in the emergency room almost two weeks before we got into Providence with my younger son,” she said. “We were there 24 hours a day. He had a bed. I had a chair. A hard chair.”
Though a new program may arise, it won’t be easy to replace a long-established treatment center with experienced staff like ART and a loss in the continuity of care could be traumatic for children and their families. Tracy M. pointed out that when her older son was placed at ART, he benefited from his younger brother’s experience there, and from the family’s familiarity with the program and staff.
“My kids always trusted the ART program,” she said. “I can’t see how they don’t have enough patients to fill the beds.”
Youngsters still find themselves boarding (the medical term for living) in emergency rooms today. Dr. R. F. Conway, medical director of emergency services at Cooley Dickinson Hospital in Northampton, said through hospital spokesperson Christina Trinchero that kids needing psychiatric services sometimes board in Cooley Dickinson’s emergency room.
“While we do not have a way of quantifying how many children, Dr. Conway estimated these children could wait up to a day or more in the Emergency Department,” Trinchero said in an email.
Dr. Barry Sarvet, a child psychiatrist at Baystate Medical Center and chairman of the hospital’s department of psychiatry said that children waiting for psychiatric beds board at Baystate, too, and that the hospital doesn’t keep a count of those cases.
“They end up having to stay in the emergency room for days, sometimes a week or longer,” Sarvet said. “Sometimes they’re sent to pediatrics floors, and those floors are unequipped to deal with them. Sometimes those patients require supervision not within the skill set of pediatric nurses. Some have aggressive behavior. Whenever we have a patient that we board on the pediatrics floor, we bring in whatever resources are necessary to keep everyone safe, but it’s still not the same as receiving treatment.”
Even if statistics on boarding were kept, Sarvet explained, they wouldn’t give a true picture of the problem. “Part of the problem with the average numbers is that the situation is sporadic,” he said. “There will be months that go by where everyone’s getting what they need. Then we might have a month when we have 10 patients waiting, and maybe waiting for over a week.”•
