The Bazelon Center for Mental Health Law

For Immediate Release
March 24, 2000

Contact: Christopher Burley, 202-467-5730 ext 133, leec@bazelon.org

Even With Health Insurance, Many Parents Have to Give up Custody
to Get Mental Health Care for Their Child

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Washington D.C., March 24, 2000 —In at least half the states, according to a new report by the Bazelon Center for Mental Health Law, parents have to choose between getting the mental health treatment their child needs or keeping custody of their child. Nationwide, one in five families who seek mental health care for a child faces this draconian dilemma.

Many of these children have health insurance. However, the combination of limited mental health coverage in private plans and unenforced entitlements in public plans deprives them of access to needed mental health care unless they become wards of the child welfare system.

"In the process of desperately seeking help for their children," the Bazelon Center asserts, "good, caring parents are treated as abusive or neglectful and deprived of the ability to raise their children consistent with their values." The 84-page report, Relinquishing Custody: The Tragic Result of Failure to Meet Children's Mental Health Needs, illustrates the problem with individual families' experiences.

For example, 10-year-old Ginny has attention deficit hyperactivity disorder (ADHD). After her father got a job, the family's income rose above the limit for Medicaid, which had covered Ginny's treatment. But her father's policy through his employer had very limited mental health coverage. When Ginny's disorder worsened, the managed care provider told her mother, Rebecca, that the only way Ginny could get the care she needed was through the child welfare system. Rebecca had to go to court and relinquish custody of Ginny. Since then, she has been subjected to all the standard home visits and evaluations, even though it was agreed that she wasn't an abusive parent. In the meantime, the foster mother gets Medicaid-covered care for Ginny, while Rebecca and her husband are not allowed even to take their daughter to church on Sundays.

Ginny is among the 20 percent of all children who have a diagnosable mental, emotional or behavioral illness, according to the federal Substance Abuse and Mental Health Services Administration. Among children taken into state custody for access to mental health services are adopted children who develop serious mental or emotional disorders and those whose insurance limits on mental health treatment have run out.

The Bazelon Center report analyzes the failings of public systems that lead to custody relinquishment. For example:

• Many state Medicaid programs have not written the definitions or billing procedures necessary to ensure that eligible children receive the mental health screening and services to which they are entitled under federal law.
• Some residential-treatment providers refuse to serve Medicaid-eligible children unless they are wards of the state.
• Although the new federal Child Health Insurance Program was meant to expand the number of children covered, few of the state-designed plans give children access to an adequate array of intensive mental health services.
• School districts often interpret the federal Individuals with Disabilities Education Act (IDEA) too narrowly, to exclude services that children with serious emotional disorders need to benefit from special education.
• Schools fail to assess these children as qualifying for assistance, instead labeling them "disciplinary problems" and referring them to the juvenile justice system.
• State officials and judges often mistakenly assume that the child welfare system must have custody of a child before it can claim federal reimbursement for some of the cost when a child needs residential treatment.

The Bazelon Center lists 27 states where custody relinquishment occurs for one or more of these reasons. The most frequent incidence is reported in Colorado, Indiana, Iowa, Nebraska, Tennessee and West Virginia. Families are also asked to relinquish custody in Arizona, California, Florida, Illinois, Kentucky, Louisiana, Maryland, Michigan, Missouri, New York, Ohio, Texas and Utah.

The report's co-authors, lawyers Mary Giliberti and Rhoda Schulzinger, analyze federal and state policy initiatives to address the problem, with examples from various states. These include:

• clarification that federal child welfare law does not require custody relinquishment;
• the "Katie Becket" option and home- and community-based care waiver that allow state Medicaid programs to cover eligible children when home care is less costly than hospital care;
• revision of state laws to prohibit the child welfare system from requiring custody without giving up custody;
• juvenile court jurisdiction to order mental health treatment;
• changes to state Medicaid definitions and billing systems that will enforce children's entitlement to mental health screening and services;
• legislation establishing multi-agency systems of care, coordinating and sharing resources to serve children with disabilities and their families, as enacted in California, Georgia, Maine, South Carolina, Rhode Island, Vermont and Virginia.

Charts in an appendix to the report include statutory language from states that have implemented some of these changes.

The report also reviews two examples in depth: a Medicaid waiver program in Kansas and, in Oregon, a statute enacted to prohibit custody relinquishment and authorize a voluntary agreement for out-of-home care. The waiver program created four new services: family training and support, "wraparound" community support, respite care and services to foster independent living skills. This approach the authors found, "has tremendous potential."

However, implementation of the statute banning custody relinquishment, they wrote, while helpful for some parents, "only eases the issue of custody." Such a ban must be combined with initiatives to expand availability of the services needed by children, the authors explain. The initiatives recommended as most important are:

• enforcing federal entitlements under Medicaid and the Individuals with Disabilities Education Act;
• expanding children's eligibility for Medicaid; and
• creating a comprehensive, multi-agency system of care for children with mental health needs.

In addition to the pain suffered by families as a result of such custody relinquishment, the Bazelon Center's report notes, "the societal cost far exceeds the cost of adequate and preventive mental health treatment." Furthermore, Ms. Giliberti points out, "both child welfare and juvenile justice are already overstressed systems and, in any event, are not equipped to serve children with serious mental health needs."

Citing a saying among family advocates, "If you want mental health services for your child, you have to beat 'em up, lock 'em up or give 'em up," she urges, "surely we can do better."

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The Bazelon Center for Mental Health Law is the leading national legal-advocacy center representing people with mental disorders, working to protect and advance the legal rights of adults and children with psychiatric or developmental disabilities and ensure their equal access to the services and supports they need for full participation in community life.