NAMI HelpLine

Posted on April 21, 2003

Arlington, VA - In a report to three leading Members of Congress, the General Accounting Office (GAO) has confirmed that states and counties force parents to give up custody of tens of thousands of children and adolescents with mental illnesses (biologically-based brain disorders) in order to secure necessary treatment -- even though child welfare and juvenile justice systems are not primarily designed to provide mental healthcare.

The report supports the landmark study Families on the Brink: The Impact of Ignoring Children with Serious Mental Illness, published in 1999 by the National Alliance for the Mentally Ill (NAMI), in which 20 percent of families surveyed reported having to give up custody of children to the state in exchange for adequate treatment.

The GAO report comes in response to the leadership of three key Members of Congress pressing for closer scrutiny and reform of a system in shambles: U.S. Senator Susan Collins (R-Maine) and U.S. Representatives Pete Stark (D-CA) and Patrick Kennedy (D-Rhode Island).

"Every parent in America should be grateful to Senator Collins and Representatives Stark and Kennedy for insisting on this very important, first federal look at a system that forces families to be torn apart in order to get the help they need," said Darcy Gruttadaro, national director of NAMI's Child and Adolescent Action Center.

"Mental illness may strike any family. No one is immune. It is not the fault of either the parents or the child. No parent should ever have to confront this kind of choice."

Based on estimates provided by 19 states and 30 counties, the GAO found that more than 12,700 children were placed in the child welfare or juvenile justice systems in 2001 for mental health treatment -- even though none had been abused or neglected or committed a delinquent act -- because necessary services were not available in their home communities.

Parents from all financial levels may be forced to make the heart-wrenching decision to give up parental rights in exchange for help, but the federal government picks up most of the tab for residential care for children from low-income families. In many cases, the cost runs as high as $250,000 per year for a single child.

No formal or comprehensive federal or state system exists to track these custody relinquishments, In fact, the GAO report admits that figures available from 2001 understate the problem. Of the states from which the GAO could not obtain estimates, five have the greatest populations of children in the nation.

Of those states that did provide estimates, Michigan, Connecticut, Montana, Washington and Rhode Island reported the most children placed into the child welfare system, with numbers ranging from 425 to 1100. Counties reporting the highest estimates of children placed in the juvenile justice system were Pima, Arizona; Miami-Dade, Florida; Middlesex, New Jersey; Prince William, Virginia; Lake, Indiana; and Philadelphia, Pennsylvania, with numbers ranging from 500 to 1,750.

"Most child welfare and juvenile justice workers are not trained to understand or handle healthcare for children and teens with mental illnesses," Gruttadaro said. "Even worse, the juvenile justice system is hardly a therapeutic environment. In fact, that kind of environment often makes mental illnesses worse."

"The tragic reality is that as a nation we abandon and neglect families with children with mental illnesses, driving them into the wrong systems. Those systems that do exist to serve children and adolescents with mental illnesses struggle with inadequate funding or budget cuts. They are fragmented and overly bureaucratic. Families in crisis are left on their own to navigate multiple, complex systems that do not work well."

"The system is not family-friendly. It overwhelms families who often require immediate, intensive assistance. As the GAO report indicates, living with a child with a serious mental illness without appropriate treatment or services -- without any support -- strains a family's ability to function," Gruttadaro said.

NAMI families long have raised concerns underscored by the report:

  • Teachers often do not understand basic facts about mental illnesses and are unprepared to teach children with them effectively. School officials often blame parents for a child's mental illness and fail to follow federal standards for special education.
  • Numerous barriers to treatment and services exist: discriminatory caps on mental health insurance coverage, lack of qualification for Medicaid, and a profound shortage of mental health specialists for children.

In response to the GAO report, NAMI specified legislation pending in Congress which can make a difference in reversing the "moral, economic and political scandal" of child custody relinquishment, as well as provisions in one bill that threaten to make it worse.

  • The Paul Wellstone Mental Health Equitable Treatment Act of 2003 (S. 486 and H.R. 953) – to end insurance discrimination in health insurance against children and adults with mental illnesses.
  • The Family Opportunity Act of 2003 (S. 622) – to allow states to expand Medicaid coverage to low and middle-income families, which are the ones most often forced to give up custody of children to states in exchange for treatment.
  • The Child Healthcare Crisis Relief Act (H.R. 1359) – to address the national shortage of children’s mental health specialists.
  • Revisions to the Individuals with Disabilities Education Act (IDEA) within a reauthorization bill (H.R. 1350)—which NAMI opposes—that would eliminate rights of students with disabilities under existing law to receive free and appropriate public education.

President Bush's "New Freedom" Commission on Mental Health is scheduled to make recommendations soon to reform the nation's overall mental health system. NAMI pointed to the Department of Health and Human Services (HHS), Department of Justice (DOJ) and Department of Education (DOE) as holding many of the keys to resolve the child custody issue.

"The problem is a national tragedy." Gruttadaro said. "It is a national scandal. Federal leadership is needed to build a system that can provide appropriate treatment for children with mental illnesses. No child should be left behind. No parents should ever be forced to abandon their children to get the help they desperately need."

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