Every year many parents of children who have both developmental and emotional disorders are faced with an impossible situation. They must either deny their children the intensive services they desperately need or relinquish custody to state authorities. This tragic choice typically arises when a child requires very costly and specialized care but community-based programs are inadequate. It is not unusual for private medical insurance to severely restrict mental health care as well as habilitation for developmental disabilities. If a family exhausts all available resources, they may be forced to transfer custody of their child to state authorities in order to access intensive treatment. The son or daughter is often sent far from home and the parents lose their ability to monitor the quality of the care their child receives. This is certainly not a new problem for the developmental disability community, but it is completely avoidable.
The Bazelon Center for Mental Health Law, which has provided national leadership on this issue, reports that thousands of families face this dilemma each year in roughly half of the states. The General Accounting Office reported (2003) that for fiscal year 2001, more than 12,700 children were transferred into the custody of state authorities when parents could not qualify for Medicaid and were desperate to find needed mental health services. Existing data do not make clear, though, how many affected families have children with both developmental and emotional/behavioral disorders. Anecdotal reports from state officials suggest that many children with intellectual disabilities or autism and very severe behavioral disorders may be involved. Thousands of very young children enter child welfare each year with both developmental disorders and severe behavior problems which their communities are not prepared to address.
In some states, no distinction is made between parents who place their children as a last resort to obtain care and those who are neglectful or abusive. Parents may have to assert that they are abandoning the child. One can easily imagine the potential consequences for a loving family and for a child who already has an emotional disorder and developmental vulnerability.
Among children who go into care, many are placed in child welfare, but some end up in the juvenile justice system, even if they have committed no crime. The U.S. Senate's Governmental Affairs Committee (July 2004) reported that over a six-month period, nearly 15,000 youth in jail were waiting for community mental health services. It is unclear how many of them entered the system because their parents could not access appropriate care. Our country's persistent disparities in access to services, though, are clearly mirrored in over-representation of Black and Latino youth in detention centers and jails. Among all youth in custody, the proportion with dual disorders is thought to be substantial.
Custody relinquishment to access care is not only an unjust practice, but also a fiscally irresponsible one. It plainly wastes public funds. The states end up paying for ordinary living expenses that parent would otherwise gladly cover. Child welfare costs are expanded and the most expensive institutional care is substituted for more cost-effective services in the home or community.
Part of the tragedy is that this practice is avoidable. Needed changes in existing education, child welfare and health financing regulations have been have been clearly spelled out in documents published by the Bazelon Center (listed below). Pending federal legislation such as the Family Opportunity Act (S. 622, H.R. 1811), would allow families above the usual income levels to buy into Medicaid on a sliding scale basis and expand availability of home and community-based waivers. The proposed Keeping Families Together Act (S. 1704, H.R. 3243) would expand comprehensive interagency services and provide for state infrastructure to make the expansion possible. It would also require the federal government and the states to address the mental health needs of children in public care and report on the states' success making this kind of custody relinquishment obsolete. At present, however, it is unclear how effectively the special needs of children with dual diagnoses would be addressed through any of this legislation.
Avoiding Cruel Choices: A Guide for Policymakers and Family Organizations on Medicaid's Role in Preventing Custody Relinquishment (2002), Bazelon Center for Mental Health Law, www.bazelon.org
Relinquishing Custody: the Tragic Result of Failure to Meet Children's Mental Health Needs (2000), www.bazelon.org
Child Welfare and Juvenile Justice: Federal Agencies Could Play a Stronger Role in Helping States Reduce the Number of Children Placed Solely to Obtain Mental Health Services (2003) U.S. General Accounting Office, GAO-03-397, www.gao.gov/new.items/do3397.pdf
General Resources for Families
The Bazelon Center: www.bazelon.org
The State Protection and Advocacy Centers: http://www.protectionandadvocacy.com
The Federation of Families for Children's Mental Health: www.ffcmh.org
Submitted by Diane M. Jacobstein, Ph.D.
Georgetown National Technical Assistance Center
for Children's Mental Health