Monday, May 21, 2007

Fighting for mental health

A lack of access to services tops complaints

By Jack Dew, Berkshire Eagle Staff
Berkshire Eagle

When Colleen Surprise Jones was 13 years old, she spent afternoons in the Berkshire Mall thumbing through medical books, trying to diagnose her mental illness.

Jones, now 30, said she knew she was ill, but the doctors and educators with whom she spoke refused to listen. Finally, she realized she was suffering from obsessive compulsive disorder, a condition so debilitating she dropped out of school.

But even when she went to doctors and gave them her self-diagnosis, they didn't believe her. Desperate for treatment, she started lying to doctors, telling them she had been diagnosed by a psychiatrist.

Even then, the expensive and time-consuming behavioral therapies that could have helped her were not covered by her insurance and doctors wouldn't provide them. So between the ages 13 and 24, Jones said, she was on 11 different medications, some of which caused powerful side effects.

"I was never respected. You are not respected when you go for treatment, and the first thing you have to accept is that your rights are taken away," she said. "I learned early on that I would have to be my own advocate, that there are no adults looking out for you."

Now, through her paintings, Jones criticizes the medical system that she says let her down. Most experts involved in children's mental health care agree with her that the system is broken, and that opinion got judicial backing last year, when a federal judge ruled in Rosie D. v. Romney that it was "woefully inadequate, with detrimental consequences to thousands of vulnerable children."

In the wake of last year's lawsuit, attention is being focused anew on the health care system, and a pending bill on Beacon Hill could bring major reforms.

Chief among the problems has been a lack of access to services, said state Rep. Ruth B. Balser, D-Newton. Balser is the House chairwoman of the Joint Committee on Mental Health and Substance Abuse; she has co-sponsored the reform bill.

In Massachusetts, Balser estimated, 20 percent of children who need mental health treatment don't get it. The lack of proper care means some children never get help, while others become "stuck kids," trapped in an intense inpatient setting because they can't get the services they need at home or in a long-term setting.

Balser's bill — which has been debated once in committee and will undergo some revisions — would create a fund to move stuck kids to more appropriate settings. It would also streamline the bureaucracy, making the state's Department of Mental Health the lead agency, an effort to bring some coordination to the oversight of each child's case.

And it would require Medicaid to reimburse pediatricians for mental health screenings, and would mandate private insurance companies to cover certain psychiatric care for children.

"I hope we can at least do something," Balser said. "It is an ambitious bill, ... but I am hoping the Legislature will do something to improve access to the mental health system."

Short-term options

At the Brien Center in Pittsfield, Jim Mucia oversees an eight-bed inpatient center for children suffering intense mental health problems.

When children come into his facility, Mucia said, they are often in crisis and need to be stabilized. They are put on medication, given some behavioral therapy and then diagnosed. Perhaps they can return home or move to a residential center that is capable of providing long-term treatment.

While Mucia's center is designed to treat patients for up to two weeks, some children end up stuck there for months and even a year because there is no place to send them.

"Institutional care at any level is not a family," Mucia said, "and our treatment programming is based on short-term, not long-term, options. It is not exactly the care that they need."

Mucia said the system needs a dramatic overhaul. The state needs to change how caregivers are paid, reimbursing them for their caseload instead of by the hour, so they could afford to knock on doors or contact family members and get reluctant children into the treatment they need.

And Mucia joins many in calling for increased at-home services for children, particularly those in crisis, which emerged as one of the key recommendations of last year's lawsuit. If a caregiver can go into the home and treat the child there, the experience is far less disruptive.

"If a kid is breaking things, cutting himself, throwing things, the parents can't deal with it, but we can. They don't need to go to the emergency room or the hospital. We can deal with them in the home just as easily as we can at a facility," Mucia said.

A burden on insurance

The National Alliance on Mental Illness agrees that reform is needed and supports the bill pending on Beacon Hill. NAMI Massachusetts Executive Director Toby Fisher said children's mental health care has long been lacking.

"A child with a psychiatric disorder is no different from a child with a diabetic disorder or heart disorder," Fisher said. "These are all very serious conditions that require medical care."

But the Massachusetts Association of Health Plans worries that the bill will place too heavy a burden on private insurance providers, driving up costs in an already expensive marketplace, and arriving as the state is still finding its way through a health care reform law that requires every resident to have health insurance.

"We support the provisions that don't affect the health plans," said MAHP President and CEO Marylou Buyse. "It is a very large and complex bill, and we have just made some major changes with health care reform. I think we should let that work through the system and see what the issues are."

Jones, now 30, said she knew she was ill, but the doctors and educators with whom she spoke refused to listen. Finally, she realized she was suffering from obsessive compulsive disorder, a condition so debilitating she dropped out of school.

But even when she went to doctors and gave them her self-diagnosis, they didn't believe her. Desperate for treatment, she started lying to doctors, telling them she had been diagnosed by a psychiatrist.

Even then, the expensive and time-consuming behavioral therapies that could have helped her were not covered by her insurance and doctors wouldn't provide them. So between the ages 13 and 24, Jones said, she was on 11 different medications, some of which caused powerful side effects.

"I was never respected. You are not respected when you go for treatment, and the first thing you have to accept is that your rights are taken away," she said. "I learned early on that I would have to be my own advocate, that there are no adults looking out for you."

Now, through her paintings, Jones criticizes the medical system that she says let her down. Most experts involved in children's mental health care agree with her that the system is broken, and that opinion got judicial backing last year, when a federal judge ruled in Rosie D. v. Romney that it was "woefully inadequate, with detrimental consequences to thousands of vulnerable children."

In the wake of last year's lawsuit, attention is being focused anew on the health care system, and a pending bill on Beacon Hill could bring major reforms.

Chief among the problems has been a lack of access to services, said state Rep. Ruth B. Balser, D-Newton. Balser is the House chairwoman of the Joint Committee on Mental Health and Substance Abuse; she has co-sponsored the reform bill.

In Massachusetts, Balser estimated, 20 percent of children who need mental health treatment don't get it. The lack of proper care means some children never get help, while others become "stuck kids," trapped in an intense inpatient setting because they can't get the services they need at home or in a long-term setting.

Balser's bill — which has been debated once in committee and will undergo some revisions — would create a fund to move stuck kids to more appropriate settings. It would also streamline the bureaucracy, making the state's Department of Mental Health the lead agency, an effort to bring some coordination to the oversight of each child's case.

And it would require Medicaid to reimburse pediatricians for mental health screenings, and would mandate private insurance companies to cover certain psychiatric care for children.

"I hope we can at least do something," Balser said. "It is an ambitious bill, ... but I am hoping the Legislature will do something to improve access to the mental health system."

Short-term options

At the Brien Center in Pittsfield, Jim Mucia oversees an eight-bed inpatient center for children suffering intense mental health problems.

When children come into his facility, Mucia said, they are often in crisis and need to be stabilized. They are put on medication, given some behavioral therapy and then diagnosed. Perhaps they can return home or move to a residential center that is capable of providing long-term treatment.

While Mucia's center is designed to treat patients for up to two weeks, some children end up stuck there for months and even a year because there is no place to send them.

"Institutional care at any level is not a family," Mucia said, "and our treatment programming is based on short-term, not long-term, options. It is not exactly the care that they need."

Mucia said the system needs a dramatic overhaul. The state needs to change how caregivers are paid, reimbursing them for their caseload instead of by the hour, so they could afford to knock on doors or contact family members and get reluctant children into the treatment they need.

And Mucia joins many in calling for increased at-home services for children, particularly those in crisis, which emerged as one of the key recommendations of last year's lawsuit. If a caregiver can go into the home and treat the child there, the experience is far less disruptive.

"If a kid is breaking things, cutting himself, throwing things, the parents can't deal with it, but we can. They don't need to go to the emergency room or the hospital. We can deal with them in the home just as easily as we can at a facility," Mucia said.

A burden on insurance

The National Alliance on Mental Illness agrees that reform is needed and supports the bill pending on Beacon Hill. NAMI Massachusetts Executive Director Toby Fisher said children's mental health care has long been lacking.

"A child with a psychiatric disorder is no different from a child with a diabetic disorder or heart disorder," Fisher said. "These are all very serious conditions that require medical care."

But the Massachusetts Association of Health Plans worries that the bill will place too heavy a burden on private insurance providers, driving up costs in an already expensive marketplace, and arriving as the state is still finding its way through a health care reform law that requires every resident to have health insurance.

"We support the provisions that don't affect the health plans," said MAHP President and CEO Marylou Buyse. "It is a very large and complex bill, and we have just made some major changes with health care reform. I think we should let that work through the system and see what the issues are."

Jones, now 30, said she knew she was ill, but the doctors and educators with whom she spoke refused to listen. Finally, she realized she was suffering from obsessive compulsive disorder, a condition so debilitating she dropped out of school.

But even when she went to doctors and gave them her self-diagnosis, they didn't believe her. Desperate for treatment, she started lying to doctors, telling them she had been diagnosed by a psychiatrist.

Even then, the expensive and time-consuming behavioral therapies that could have helped her were not covered by her insurance and doctors wouldn't provide them. So between the ages 13 and 24, Jones said, she was on 11 different medications, some of which caused powerful side effects.

"I was never respected. You are not respected when you go for treatment, and the first thing you have to accept is that your rights are taken away," she said. "I learned early on that I would have to be my own advocate, that there are no adults looking out for you."

Now, through her paintings, Jones criticizes the medical system that she says let her down. Most experts involved in children's mental health care agree with her that the system is broken, and that opinion got judicial backing last year, when a federal judge ruled in Rosie D. v. Romney that it was "woefully inadequate, with detrimental consequences to thousands of vulnerable children."

In the wake of last year's lawsuit, attention is being focused anew on the health care system, and a pending bill on Beacon Hill could bring major reforms.

Chief among the problems has been a lack of access to services, said state Rep. Ruth B. Balser, D-Newton. Balser is the House chairwoman of the Joint Committee on Mental Health and Substance Abuse; she has co-sponsored the reform bill.

In Massachusetts, Balser estimated, 20 percent of children who need mental health treatment don't get it. The lack of proper care means some children never get help, while others become "stuck kids," trapped in an intense inpatient setting because they can't get the services they need at home or in a long-term setting.

Balser's bill — which has been debated once in committee and will undergo some revisions — would create a fund to move stuck kids to more appropriate settings. It would also streamline the bureaucracy, making the state's Department of Mental Health the lead agency, an effort to bring some coordination to the oversight of each child's case.

And it would require Medicaid to reimburse pediatricians for mental health screenings, and would mandate private insurance companies to cover certain psychiatric care for children.

"I hope we can at least do something," Balser said. "It is an ambitious bill, ... but I am hoping the Legislature will do something to improve access to the mental health system."

Short-term options

At the Brien Center in Pittsfield, Jim Mucia oversees an eight-bed inpatient center for children suffering intense mental health problems.

When children come into his facility, Mucia said, they are often in crisis and need to be stabilized. They are put on medication, given some behavioral therapy and then diagnosed. Perhaps they can return home or move to a residential center that is capable of providing long-term treatment.

While Mucia's center is designed to treat patients for up to two weeks, some children end up stuck there for months and even a year because there is no place to send them.

"Institutional care at any level is not a family," Mucia said, "and our treatment programming is based on short-term, not long-term, options. It is not exactly the care that they need."

Mucia said the system needs a dramatic overhaul. The state needs to change how caregivers are paid, reimbursing them for their caseload instead of by the hour, so they could afford to knock on doors or contact family members and get reluctant children into the treatment they need.

And Mucia joins many in calling for increased at-home services for children, particularly those in crisis, which emerged as one of the key recommendations of last year's lawsuit. If a caregiver can go into the home and treat the child there, the experience is far less disruptive.

"If a kid is breaking things, cutting himself, throwing things, the parents can't deal with it, but we can. They don't need to go to the emergency room or the hospital. We can deal with them in the home just as easily as we can at a facility," Mucia said.

A burden on insurance

The National Alliance on Mental Illness agrees that reform is needed and supports the bill pending on Beacon Hill. NAMI Massachusetts Executive Director Toby Fisher said children's mental health care has long been lacking.

"A child with a psychiatric disorder is no different from a child with a diabetic disorder or heart disorder," Fisher said. "These are all very serious conditions that require medical care."

But the Massachusetts Association of Health Plans worries that the bill will place too heavy a burden on private insurance providers, driving up costs in an already expensive marketplace, and arriving as the state is still finding its way through a health care reform law that requires every resident to have health insurance.

"We support the provisions that don't affect the health plans," said MAHP President and CEO Marylou Buyse. "It is a very large and complex bill, and we have just made some major changes with health care reform. I think we should let that work through the system and see what the issues are."