Senator wants federal review of mental health system

By BARBARA WALSH , Portland Press Herald Writer

Copyright © 2002 Blethen Maine Newspapers Inc.

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Staff photo by John Ewing Jeremy Creamer, 13, of South Portland lives with mental illness. He plays his favorite computer game, Delta Force, while his father, Jamie Creamer, watches. Getting ready for school is a struggle for Jeremy, and his parents are still trying to get help from the state Department of Behavioral and Developmental Services. His parents say they have tried unsuccessfully for more than 18 months to get in-home help for him, and now are suing the state.

CASTAWAY CHILDREN: Maine's Most Vulnerable Kids Read the series and updated coverage on the plight of Maine children with mental illness and get more information including where to find help, a glossary of terms and how to voice your opinion, here. To top of story

U.S. Sen. Susan Collins of Maine is requesting a federal review into why some parents in Maine and other states claim they had to give up custody of mentally ill children to obtain intensive treatment for them.

Collins, a Republican, asked last week for the investigation by the U.S. Department of Health and Human Services, in response to "Castaway Children: Maine's Most Vulnerable Kids," a series by the Portland Press Herald/Maine Sunday Telegram.

The series, which was published Aug. 18-20, chronicled how mentally ill children in Maine often must wait months and years for appropriate treatment. It also examined spending on mental health services by Maine. The newspaper found that the state budgets the majority of its funding on expensive crisis care, including hospitalizations, while there is a shortage of funding for community-based prevention services.

The series prompted 250 letters, e-mails and calls to the newspaper from families, mental health experts and social workers concerned about the state's failure to help its mentally ill children.

"It seems to me we have this system where parents who give up custody of their children receive more help than parents who decide to keep their kids," Collins said. "That doesn't seem right that we're forcing parents to make such a cruel choice."

Collins said the purpose of the federal review would be to "identify the barriers in both federal and state laws that inadvertently create this problem."

Nationally, about one in four families with mentally ill children give up custody of their children for treatment, according to a 1999 National Alliance for the Mentally Ill report.

In Maine, officials at the Department of Human Services and the Department of Behavioral and Developmental Services say they do not have a policy that encourages families to give up custody for treatment.

But state social workers, mental health experts and families say Maine has a two-tiered system of care for mentally ill children. While children in parental custody may be eligible for Medicaid money to pay for some of their treatment, they sometimes must wait six months or longer for services that include in-home counseling and residential treatment.

Children who are wards of the state receive more Medicaid money and can access a wider array of counselors and social workers.

"It seems Maine needs to have a better coordinated system in providing services to children so that which door you enter the system doesn't determine what kind of care you get," Collins said.

Since the newspaper series ran, Lynn Dube, BDS commissioner, said state officials are warning caseworkers not to tell families to give up custody of their children to get more psychiatric treatment.

"We (BDS and DHS) sent a directive out to our staff about the concern people had expressed about giving up custody of their children for service," Dube said. "We've asked that if anyone has made that request that the department be alerted to it so we can put a stop to it."

Legislators, corrections officials and mental health social workers say the memos will do little good if families know the only way they can get help is to give up their child.

They also say that the four agencies that provide psychiatric care to children - corrections, BDS, DHS, and education - often feud about who will pay for and take responsibility for the state's mentally ill children.

"I do believe there are good people working in the system that care deeply about these children but territorial and funding issues get in the way," said Rep. Julie O'Brien, D-Augusta, a member of the Children's Mental Health Oversight Committee.

Child advocates also say a child is treated differently depending on which state agency oversees his or her care. A youth with a mental illness who is arrested and ends up in the juvenile lock-up may wait months because the Department of Corrections and BDS, the state's mental health agency, do not have enough money to pay for psychiatric treatment that costs from $350 to $1,000 a day.

Some 211 juvenile offenders were placed in DHS's custody in the last decade because their parents couldn't handle their needs or they couldn't afford to pay for their child's psychiatric treatment.

Department of Corrections officials say they do not have enough money in their budget to pay for youths who need long-term psychiatric treatment.

"When we face budget crunches, the first thing to go in corrections is treatment programs," said Lars Olsen, superintendent of Long Creek Youth Development Center.

Olsen said his department has been working with DHS on alternative ways for juvenile offenders to receive psychiatric help without becoming wards of the state.

Last month, the commissioners of corrections, mental health, human services, and education met as a result of the issues raised in the newspaper series.

Gov. Angus King urged the department heads to meet and discuss ways to better serve the 42,000 children in Maine who live with emotional or mental illnesses. Dube said her department is creating a Web site that would offer families direction when they need to get help for their child's psychiatric problems.

Several families profiled in the series said they had to make dozens of calls trying to figure out where their child could receive services.

Dube also said her department is working on reducing waiting lists for in-home counseling and support. The state faced two class-action lawsuits in the past five years from 1,500 families, who waited months and even years to help keep their children stable in their homes.

Dube says her agency has made progress in reducing waiting lists. This spring, there were more than 800 children waiting for in-home help for more than 120 days. There are now 230 children waiting for those services.

Federal law mandates that Maine treat these children no later than six months after they ask for help.

Though the agency says it has a new tracking system that monitors waiting lists, child advocates and families say they are skeptical that the state has an accurate picture of how many kids languish without treatment.

Jack Comart, an Augusta lawyer, says he frequently learns of cases where the state doesn't know how long families are waiting for help.

The state receives reports from private agencies, which offer in-home help and counseling. But Comart believes many families are either not put on agency waiting lists because they're too long or their cases are lost and forgotten.

"I think the state relies on these private agencies to tell them who is waiting but I hear families telling me these agencies won't put them on the list if it's more than a 30-day wait," Comart says.

Comart also is concerned that the state doesn't have a system to prioritize children who are severely mentally ill and need help right away.

Two weeks ago, Comart filed a lawsuit against the state for failing to provide in-home help for Jeremy Creamer, a 13-year-old South Portland boy. The boy's mother, Tammy Creamer, has tried for more than 18 months to get a counselor to come to their home and help Jeremy get ready for school in the morning.

Jeremy lives with several mental illnesses, including obsessive compulsive, oppositional defiant, and attention deficit disorders. In the morning he sometimes pounds on the wall and screams "Don't wake me up. I don't want to wake up," his mother said.

"Getting ready for the bus can take over four hours," Tammy Creamer says. "Jeremy gets stuck in his rituals of washing himself over and over. For the past couple of years, I've struggled every morning. I've read books, I've taken parenting classes but it's not the same as having help from a person who has skills in helping these kids."

When Creamer and her lawyer Comart met with the state during an August grievance hearing on Jeremy's case, the state mental health department worker said its agency was unaware that Jeremy had been waiting for 18 months.

"They said they had no way of tracking how long families are on waiting lists with these private agencies," Creamer says.

Lisa Burgess, director of children's services for BDS, could not comment on the case because of confidentiality reasons but said her agency does keep computer lists telling them how long families wait for services.

"We are working on the wait for in-home supports," Burgess said. "The system isn't where we want it to be yet. When you're doing massive change of any system of care, it's going to take some time."

This week, Creamer received hopeful news. Social service workers from Spurwink, a Portland-based mental health agency, came to her home and told her they're planning to hire two people to assist the family in the morning and after school.

"I hope they can give us help," Creamer says. "We can't wait anymore."

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