WASHINGTON — As the new U.S. Congress convenes next month, child advocates are putting their hopes in a bill Maine Republican Sen. Susan Collins said she will reintroduce to address a national issue: the barriers families face in accessing mental health care for emotionally or mentally disturbed children.
The goal of the Keep Family Together Act, first introduced in 2003, is to promote mental health treatment for children in a family and community setting instead of in a residential facility.
The bill would provide states with $55 million a year for five years to support and maintain systems of care focusing on community-based services. It is intended to help families get state services that are now either insufficient or too expensive and allow them to care for their children at home.
“It’s an issue that doesn’t come to the attention of policymakers that often,” Collins said in an interview. “Families tend to suffer in silence. This happens all over the country, but individual families are struggling on their own.”
She said the bill would encourage states to create more cost-effective and innovative services. It also would establish a task force to make recommendations on how to improve mental health access and services in the child welfare and juvenile justice systems.
“It is providing some funding resources for the kind of services that parents need,” Carol Carothers, executive director of the Maine National Alliance on Mental Illness, said. “Just people recognizing that it’s happening would help. There hasn’t been much progress so far.”
Collins said she is introducing the bill to help reduce the number of parents who relinquish custody of their children and place them in the child welfare system or the juvenile justice system as a way to provide them with care.
“I don’t think there is much difference in Maine,” Carothers said. “I don’t have a line of families calling, but it is still an issue. It is still really hard to get treatment.”
The issue was brought to light in a 2003 Government Accountability Office report requested by Collins and Reps. Pete Stark, D-Calif., and Patrick Kennedy, D-R.I., which showed that parents placed more than 12,700 children into the child welfare or juvenile justice systems in fiscal year 2001 so that they could receive mental health services.
Because 32 states didn’t provide the GAO with any data, the report concluded that “the number of children placed is likely to be higher.”
Since then, no new data have been compiled because states don’t track this practice, but Collins said she will request the GAO to update the report.
During hearings in 2003 before the Senate Committee on Homeland Security and Governmental Affairs, Tammy Saltzer, then an attorney for the Bazelon Center for Mental Health Law, a Washington-based advocacy organization, said that “when families are uninsured or have exhausted their private insurance benefits, both mental health providers and public child welfare agency staff often advise parents that relinquishing custody of their child to the state is the only way to obtain services.”
She also said it resulted in children being placed in more expensive and less supportive residential placements.
Even if families’ relinquishing custody is more the exception than the rule, said Darcy Gruttadaro, director of the child and adolescent action center at the National Alliance on Mental Illness, families still have difficulties getting mental health care for their children.
A 20-state survey the alliance conducted reported that “64 percent of families with children with special health care needs, including children with mental illnesses, are turning down jobs, raises and overtime so that they can remain in the income bracket that qualifies their child for Supplemental Security Income and Medicaid.”
Middle-class families are especially affected. Their salaries are too high to get Medicaid but too low to cover the cost of therapy and medication, outpatient visits or residential treatments — especially since insurance companies impose caps on costs and stop reimbursements after a period of time, said Lee Carty, spokeswoman for the Bazelon Center for Mental Health Law.
The GAO report said residential treatment facilities can cost up to $250,000 a year for one child. One outpatient therapy session can cost more than $100.
Since 2003, progress has been made, thanks to state and federal regulations adopted in the last few years.
The Family Opportunity Act, signed into law in February 2005, included one of the provisions in Collins’ bill. It expands Medicaid coverage to children with mental health disorders under the Katie Beckett waiver, which allows Medicaid eligibility for home care to be determined by the individual’s income and assets and not the income and assets of the family. In this way community-based services are available to eligible children who otherwise would be in residential treatment facilities.
The mental health parity law, attached to the economic bailout bill in October, was another welcome step. The law, which goes into effect in October 2009, requires companies with more than 50 employees to provide equal insurance coverage for physical and mental health services.
Maine, along with 41 other states, already has a parity law, but employers who self-insure didn’t have to follow it. Under the new federal law, they will have to.
Child advocates still think more needs to be done, especially considering what happened recently in Nebraska, where more then 30 children were abandoned under the state’s safe haven law. Most were either waiting for mental health care or had been treated for mental illness.
“There are significant loopholes in the parity laws both in the states and at the federal level,” Carothers said. “In the small-group market there is no parity, so for many of the country’s citizens, there are significant limits on insurance coverage. And many states are putting additional limits on Katie Beckett these days because of the cuts to Medicaid and to mental health services in general.”
According to Carrie Horne, assistant director of the Maine National Alliance on Mental Illness, the state recently implemented an annual premium for families receiving aid under the waiver and will soon double it, which drives families to choose to drop out of the program, she said.
The Bazelon Center’s Lee Carty said that the recent parity law and the Family Opportunity Act help but that they are “still a drop in the bucket.”
“To make a real difference, we need a comprehensive mental health care reform,” Carty said.