State insurance programs separate families seeking mental health services for their kids

An unintended consequence of many state and federal coverage programs for children is that parents are forced to relinquish custody of their children to the state in order to obtain needed intensive mental health services for their kids. "Many people don’t realize this is happening," says Tracy M. Delaney, behavioral health policy associate with the National Conference of State Legislatures (NCSL) in Washington, DC.

"It’s caused by a lack of access to services, a lack of needed community-based treatment, and a lack of insurance coverage. It can be very frustrating for parents when they have a child in need of intensive, possibly long-term care and they can’t afford or obtain it unless they relinquish custody of the child to the state," she adds.

The situation is getting attention from the NCSL and other advocacy and policy organizations now as a result of an 84-page report on the problem, Relinquishing Custody, issued by the Bazelon Center for Mental Health Law in Washington, DC. Nationwide, the report says, "one in five families who seek mental health care for a child faces this Draconian dilemma. Many of these children have health insurance coverage. 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."

The report’s author, Bazelon staff attorney Mary Giliberti, says the problem is systemic, caused by a private health insurance system that limits mental health services and doesn’t provide the home-based services and family support that people need. "We hear about so many people who are insured, but we don’t hear that they are vastly uninsured for mental health."

In addition, state and federal programs contain entitlements that often are not provided, and it would be necessary for families to sue the state to try to force compliance with the law. To compound the problem, states have flexibility in deciding what services to provide and there is no consistency. Even under the Children’s Health Insurance Program (CHIP), states can decide whether to follow Medicaid or design their own plan. Many of those that have developed their own non-Medicaid program don’t include adequate mental health services, Ms. Giliberti says.

"In the process of desperately seeking help for their children, good, caring parents are treated as abusive or neglectful and deprived of the ability to raise their children consistent with their values," the report states. The most frequent incidences of custody relinquishment occur in Colorado, Indiana, Iowa, Nebraska, Tennessee, and West Virginia. Families living in Arizona, California, Florida, Illinois, Kentucky, Louisiana, Maryland, Michigan, Missouri, New York, Ohio, Texas, and Utah also are forced to relinquish custody, according to the report.

From Ms. Giliberti’s perspective, the global solution lies in providing all children access to all needed mental health services. Absent a total fix, however, what seems to work best are state solutions that expand access to services through waiver programs that increase eligibility, through systems of care that integrate funds to serve patients through a consortium of agencies, and through individual demonstration projects.

Eleven states now prohibit their child welfare agency from requiring custody relinquishment to access mental health services. Bazelon says that while this stops the problem at its point of origin — the child welfare system — by itself it is insufficient because it does not increase availability of mental health services. Seven states allow voluntary agreements between parents and the child welfare system for out-of-home care placement without custody relinquishment. Four states have obtained Title IV-E waivers for the child welfare system to address the mental health needs of children in or at risk of entering state care. But parents are still forced to work with a bureaucracy designed for abuse and neglect cases, and children lose contact with their family and community because placements are out of the home.

Three states have given their courts jurisdiction to order mental health treatment or care for children in an effort to avert the need for out-of-home placements. Ms. Giliberti says the disadvantage in this approach is that parents are required to seek help from the juvenile court, often an intimidating forum. "However, a concerned judge who is well-informed about children’s mental health and family support issues can be a family’s powerful ally in obtaining services."

Twenty-one states and two territories have expanded their Medicaid program under CHIP, and 13 states have a combination of state-designed and Medicaid CHIP programs. Of the states that have created separate plans, two are covering wraparound services. Three states are using home- and community-based Medicaid waivers to provide an array of intensive services for children with serious mental health needs.

But Ms. Giliberti cautions that in several states whose Medicaid programs have adopted a managed behavioral health care model, the shift appears to be exacerbating the problem of custody relinquishment. Tennessee has tried to resolve that problem by adding an amendment to the managed care contract imposing a fine when failure to provide a covered service results in a child enrollee entering state custody. And in Arkansas, stakeholders made sure the request for proposal for services clearly defined such a wide array of community-based mental health services for children that families would not have to encounter the child welfare system.

The report gives an in-depth review to a Kansas Medicaid waiver that holds great promise and an Oregon law that prohibits custody relinquishment for residential mental health treatment. Ms. Giliberti says the Kansas waiver has enabled many more children to access services without entering state custody by adding four new services:

1. family training and support;

2. wraparound facilitation/community support;

3. living skills services;

4. respite care.

The waiver has reduced custody relinquishment and led to positive outcomes in schools, the report states. "Some problems have arisen in providing services throughout the state and in making some of the services in the plan available because of difficulties recruiting staff. Generally, however, parents are very pleased because the waiver allows them to raise their children at home without court involvement."

While some parents have been helped by Oregon’s law banning custody relinquishment for the sole purpose of obtaining services for a child’s emotional, behavioral, or mental disorder or physical disability, it does not address the underlying lack of mental health services outside the court system. Ms. Giliberti says there also have been difficulties implementing the law because caseworkers know too little about it, families are unaware of their rights and responsibilities under it, the voluntary placement forms are confusing, and the child welfare agencies have not tracked implementation.

Ms. Giliberti says part of the problem is that people aren’t aware of the situation, and Bazelon hopes its report will help increase public consciousness. It’s often difficult to get families to speak out about what’s happening to them because they are so busy dealing with their child’s mental health crisis, she says.

Contact Ms. Giliberti at (202) 467-5730, ext. 15, and Ms. Delaney at (202) 624-3577.