April 05, 2020

State seeks improved treatment for children > Mental health care a costly hodgepodge

AUGUSTA — When her son threw a bicycle rim at her one day about six years ago and then came after her with scissors, Cindy Seekins finally broke down and took him to the emergency room. Three days of 24-hour armed police surveillance later, her then 11-year-old son was taken to a place where he could live and get psychiatric help.

When he was released from the residential treatment facility four months later, the state paid the bill of nearly $88,000.

“I was just wild when I saw that [total],” Seekins said, because although he was correctly diagnosed then with brain damage, she knew the tests he needed would have been much cheaper with an outpatient visit. And she would have liked to have avoided the crisis that brought him to the treatment center she calls “a warehouse for drugged kids.” She said, with amazement, “Do you know what kind of services and aid I could’ve gotten for him for that kind of money?”

That’s what the state is asking now. With a total cost of about $150 million a year and tens of thousands of children estimated to need treatment, a task force has designed a proposal meant to improve care and save money.

Seekins’ 17-year-old son has gone from diagnosis to diagnosis, treatment to treatment, agency to agency. Sometimes he goes to school. Sometimes he has to stay home. He was prescribed drugs that made him suicidal, put in a temporary therapeutic foster home that made him more aggressive, and given three years of therapy with five different therapists, Seekins said. During each session, he just zipped his jacket up over his head and sat silently, while his mother told their story again.

When he has consistent care, Seekins said, he gets better.

Consistency lacking

The state has no consistent system of mental health care for children. Because of the way that programs are funded — through Medicaid, federal grants, state money — there are several departments trying to help kids, and most of the help is in the form of very expensive institutional care.

Compared to the national average, Maine sends more than twice as many kids to the hospital, according to the task force.

The state spends 75 percent of its Medicaid money on placements that are long term and restrictive. Maine has no long-term psychiatric hospitals, so in the 1996 fiscal year 74 children were sent out of state at an average cost, per child, of more than $81,000.

But those figures are only for people whose bills were paid by Medicaid, according to the task force report which indicates that the other 30 to 40 percent of the cases are not tracked consistently.

It’s the first time that numbers like that have been available, because with so many different systems for children, even fundamental questions like how many children are getting help and whether the money is being spent effectively can’t be answered easily.

Right now, Peter Walsh, deputy commissioner of the Department of Human Services, said there are more than 200 kids in out-of-state facilities.

5-year plan scrutinized

Melodie Peet, the commissioner of the Department of Mental Health, Mental Retardation and Substance Abuse Services, this week presented the task force plan to coordinate the efforts of all those departments, and provide better and more cost-effective services. The five-year plan, the result of months of work by a large group of mental health workers, parents, and representatives from the departments of corrections, education, human services and mental health, will be the subject of a public hearing later this month.

“People have many feelings on this ranging from euphoric to skeptical,” said Rep. Tarren Bragdon, R-Bangor. While the new plan has already been criticized for not doing enough for children, for trying to pull money away from hospitals, and for its potential cost, members of the Health and Human Services Committee for the most part echoed Senate Chair Judy Paradis, D-Frenchville, who said, “I was absolutely shocked when I saw the numbers. It’s so black and white.”

She is enthusiastic about the plan. “We have to go after this with a full-court press” she said, and create a single, consistent, accountable system for children.

That would mean, first of all, that more children could be helped. “There are a lot of children who have needs that haven’t been met — because there aren’t resources or because they haven’t qualified for one reason or another,” said Rep. Thomas Kane, D-Saco, a member of the task force with more than 30 years of experience in the mental health field. Different areas of the state have different kinds of treatment available, there is different funding for different types of disorders, and money plays a big role. Seekins told of not being able to afford treatment that cost nearly as much as her paycheck — but having too much money to qualify for Medicaid.

Paradis said money spent early on to help a child and identify problems and find treatment could save lots of money — not to mention anguish for the families.

A single system would mean that when a parent realizes that a child may need help, there would be a clear place to go and ask for help, and someone responsible for the child’s treatment at home, at school, or in a hospital. “It would guarantee that a family with a child in need is going to get the service, not get the run-around” from various state agencies, Kane said. Several parents told of calling hospitals and state offices and even churches, not knowing what they were looking for except that they needed help.

According to the task force report, more than half the children placed out of state don’t seem to have a case manager — which means that someone has to start from scratch figuring out what the child needs after being discharged.

Bragdon said he’s not convinced that the mental health department should be the one to oversee everything. “It seems like they’re biting off an awfully big chunk,” he said. And he’s concerned about the idea that for each of seven regional networks there will be a manager, some private organization which will have contracts with the local agencies. “Maine is a small state,” he said, so it will be hard to avoid a conflict of interest with the care providers like hospitals and clinics. But overall, Bragdon said he supports the idea of a single system to coordinate care.

Seekins said that changing programs for her son, who has brain damage and is borderline mentally retarded, often forces him backward rather than forward. When he has to try something new, he gets anxious, she said. And when he gets anxious he gets aggressive. Now that he’s 17 and has grown — he’s now 6 feet 11 inches and 340 pounds — it’s not easy to find professionals to work with him. That’s why he sometimes has to miss school, she said; he generally needs two trained aides with him. Schools have had difficulty finding people for the job. She told of an aide who was finally hired, then she introduced him to her son. That was that.

Avoiding `slots’

By blending the funds of different state departments, the agencies can be more flexible about helping kids with complicated and changing needs, rather than trying to fit them into a “slot” that is funded. When parents describe their children, it’s rare to hear of someone who fits neatly into one category; most slip out of characterizations as quickly as they’re put in. Peet mentioned the Wings Project in Bangor as a model for developing a creative approach based on each child’s needs.

That type of program is exactly what is needed, Seekins said. When she brought her son to the hospital when he was 8 years old, an employee there advised her to “give him up to [the Department of Human Services] because he would drain me mentally and financially.” She laughed in amazement at the idea of giving up her son, but there are families in Maine who do it in order to get treatment for a child. Shirley Mattson of Bucksport heard that advice several times, she said, but said of her granddaughter, simply, “It’s nice to have her home.”

But of course, children with emotional or behavioral problems can’t always be cared for at home. That’s why hospitals and residential treatment centers exist, to handle crises. As debate goes on about the adult mental health system and whether the state has been too aggressive in reducing the size of places like the Bangor Mental Health Institute, this task force plan is sure to raise similar questions about how best to handle extreme cases.

Several members of the Health and Human Services Committee asked about accountability as they looked at the task force report Tuesday. Peet assured them that her department would, ultimately, be responsible. Rep. Elaine Fuller, D-Manchester, said, “That is essential. Otherwise it will be a big boondoggle,” just shifting money around and changing jurisdictions.

“It looks like you need $33 million to do this plan,” said Rep. Wendy Pieh, D-Bremen, looking at the lists of new positions — crisis managers and in-home behavior specialists and trained foster parents and other community mental health workers. “What will you do if you don’t get it?”

Peet answered, “We think there is a lot of excess now in our way of spending, so a huge part of this” could be covered with the current funding, by shifting money from hospitalizations, for example, to things like people trained to help out at home. There will also be more federal money available for children’s health now than there has been in the past.

“I suppose some people might just look at the price tag and walk away,” Paradis said. “But I am convinced it will be a major savings to the state.” Several legislators said that the plan is a beginning, an idea that will need a lot of questions asked and revisions made before it is ready.

Now Andy Seekins is doing better than ever before with a consistent program of treatment, his mother said; she proudly tells stories of how independent he is becoming, what a good sense of humor he has, and how he’s now much better able to enjoy things like fishing and the friends he’s made with his CB radio.

But when he turns 18 in May he will switch to another system, the adult program for the mental health department. “I don’t know what to expect,” Seekins said. “I guess it’ll be a learning thing like it was with this system. This was a nightmare at first, but it’s gotten a lot better. Now I know what to ask for.”

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