The idea of being forced to decide between the custody of a child and accessing critically needed services for a child with severe mental illness is unspeakable -- but a stark reality for too many families. According to the recent Surgeon General's report, approximately 5% of children have severe and persistent mental illnesses. Frequently, these children do not have access to the treatment and services they need. As a result, far too many families are forced to do the unthinkable - relinquish custody of their child to the state to access services to treat the child's mental illness.
How wide spread is the problem? Neither the state or federal government track the number of cases in which parents must relinquish custody to access services for a child with mental illness. Despite the lack of government data, a 1999 NAMI report shows the prevalence of the problem. In this report, twenty three percent (23%) of respondents to NAMI's national survey of parents and caregivers, reported being told that they would have to relinquish custody of their child to access services. Twenty percent (20%) of the respondents ultimately relinquished custody.
The Failure of Existing Systems
The Judge David L. Bazelon Center for Mental Health Law recently released a report which highlights the harsh realities of custody relinquishment. This article provides a summary of the Bazelon Center's report on custody relinquishment.
No federal law currently exists that would entitle children to services for their mental illness, and there is no single source of state or federal funding for these critically needed services. Instead, families must attempt to access services for their child from several uncoordinated and poorly implemented entitlement programs.
Theoretically, families should be able to access services for children with serious mental illnesses through existing systems -- private health insurance, Medicaid, special education, and/or the child welfare system. The reality is that these systems have repeatedly failed families and their children with severe mental illnesses. Private health insurance is often not an option for families with a seriously mentally ill child because policies place severe restrictions on benefits for the treatment of mental illnesses. Medicaid, the Individuals with Disabilities Education Act (IDEA) and other programs designed to provide and/or finance services for children with serious mental illnesses have also fallen well short of the mark. The unfortunate result is that parents and caregivers, who are repeatedly denied services for a child with a mental illness, may be forced to enter the juvenile justice or child welfare system just to access critically needed services. These families may ultimately face custody relinquishment. Why do these systems fail families and is there any recourse?
Medicaid. For Medicaid eligible children, the Early, Periodic Screening, Diagnosis and Treatment (EPSDT) requirements in the Federal Medicaid law provide the strongest argument in favor of securing services. The federal Medicaid law provides that eligible children are entitled to EPSDT, which requires states to provide necessary health care, diagnostic services, treatment, and other measures to correct or ameliorate defects and physical and mental illnesses, whether or not the services are covered under the State Medicaid plan. Unfortunately children often do not receive the screening required under federal Medicaid law that would uncover their mental illness. Often, when a screening is done and a mental illness is detected, children fail to receive the services they are entitled to receive under the law.
The authors of the Bazelon report were unable to find any reported Court decisions challenging a state's refusal to provide services under the EPSDT requirements of the federal Medicaid law. However, the report cites cases with favorable negotiated settlements, pending cases that show promise, and cases in which courts have granted preliminary injunctions enjoining state action that creates a barrier to necessary services for children eligible for EPSDT. The plaintiffs' success in these cases shows the potential for EPSDT to be used to secure services for children with severe mental illnesses and to help reduce the incidence of parents being forced to relinquish custody to access services.
Federal Medicaid law is not always the answer to securing services for children with severe mental illnesses. Children must qualify to be eligible for Medicaid services, sometimes families are unaware that they qualify for Medicaid services. Moreover, families may live in an area that is not served by Medicaid mental health providers. Another obstacle is that in some states residential treatment providers refuse to provide services for Medicaid-eligible children unless they are wards of the state.
Individuals with Disabilities Education Act (IDEA). The purpose of the federal IDEA law is "to ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs." The federal statute defines "child with a disability" to include children with "serious emotional disturbance who, by reason thereof, need special education and related services." The critical statutory language is "related services" which may be used to secure residential treatment, intensive home and/or community-based services that the child with a mental illness needs to benefit from educational services. Unfortunately, many school districts narrowly interpret IDEA's statutory language and refuse to provide services outside of the traditional school setting, even when these services are clearly needed to assist a child with a mental illness to benefit from his/her education. Moreover, schools often fail to properly assess and identify children who require special education services, instead labeling children with serious mental illness as disciplinary problems. This results in children being denied access to needed services and leaves parents and caregivers without treatment for their seriously ill child.
Parents and other caregivers have commenced lawsuits under IDEA to obtain a range of in-home day treatment, counseling and residential services. Parents and other caregivers seeking funding by the school district for residential treatment services for their child must satisfy a 2 part test. The first part requires a showing that the current Individual Education Plan (IEP) is not reasonably calculated to enable the child to receive educational benefits. Unfortunately, satisfying this part of the test is difficult and often requires a showing that the school district has completely failed children with disabilities. If a litigant satisfies the first part of the test, they must then show that the proposed residential placement is appropriate. The IDEA case law is vast and shows that families face a difficult challenge to prevail in cases seeking a residential placement funded by the school district.
The compelling facts of custody relinquishment may also be used to force school districts to provide private school and/or out-of-home placements when children are otherwise deprived of an appropriate education because the public schools lack programs to meet their needs. IDEA has also successfully been used in litigation to secure parental and family therapy outside of the school setting.
Child Welfare System. Upon entering the child welfare system, children qualify for publicly funded services. Title IV-E , the Foster Care and Adoption Assistance Program, is a federal entitlement program for children in the child welfare system. Title IV-E pays states a large share of the room and board costs for the out-of-home placement of children. Unfortunately, states too often believe that the IV-E statute requires parents and caregivers to transfer custody of a child to the state as a condition for federal reimbursement for out-of-home placement. That is simply not the case. Federal law allows states to receive federal reimbursement for 180 days after a child is removed from her/his home pursuant to a voluntarily placement agreement and federal payments may continue beyond 180 days provided there is a judicial determination that the placement is in the best interests of the child. It is not necessary for parents to relinquish custody.
State Statutes Prohibiting Custody Relinquishment. Eleven states have enacted laws that prohibit child welfare agencies from requiring parents and other caregivers to relinquish custody to access services for their children with mental illnesses (CT, CO, ID, IA, ME, MN, ND, OR, RI, VT and WI). Seven states have enacted laws that permit parents and the child welfare system to enter into voluntary placement agreements in which children receive out-of-home placements and parents are not required to relinquish custody (CO, OR, ND, RI, ME, CT and ID).
The unfortunate reality is that parents continue to report that custody transfer occurs even in states with no explicit law or policy requiring parents to transfer custody to access services for their child with a serious mental illness. Judges commit children to a state agency, even when the state argues against the transfer, because the Courts believe that custody transfer is the only way to ensure that children receive necessary services for their mental illnesses.
Other Legal Challenges to Custody Relinquishment
Constitutional Challenges. The U.S. Supreme Court has recognized that the integrity of the family unit is protected by the Fourteenth Amendment liberty interest and the privacy interest inherent in the Ninth Amendment to the U.S. Constitution. Despite the fact that cases have established constitutional protections for family integrity, few reported cases exist that challenge the constitutionality of custody relinquishment. One major class action challenging custody relinquishment on constitutional grounds was unsuccessful.
Challenges under the Americans with Disabilities Act (ADA). The Americans with Disabilities Act (ADA) may also be used to challenge custody relinquishment. Title II of the ADA prohibits public entities, including state agencies, from excluding qualified individuals with disabilities, by reason of their disability, from participating in the services, programs, or activities of the public entity. Title II regulations require states to administer services, programs and activities in the most integrated setting appropriate to the needs of individuals with disabilities. The recent U.S. Supreme Court case in Olmstead v. L.C., interpreting the ADA's integration mandate makes clear that states may violate the ADA by unnecessarily separating people with disabilities in institutions. The impact of Olmstead is not yet known. However, one thing is clear. Olmstead opens the door to an argument that states are violating the ADA by requiring children to remain institutionalized, rather than providing care in the most integrated setting appropriate to their needs, including in-home, community-based and/or residential care.
Something must be done to stop custody relinquishment and the anguish it causes families and their children. Advocates for children with mental disabilities must work in concert to ensure that adequate systems are developed for providing and financing services for these children. A variety of federal and state strategies for accomplishing this can be considered. No parent or caregiver should face the unthinkable prospect of choosing between the custody of their child and accessing critically needed services.