Four members of Congress are attempting to help families whose only option for obtaining mental health help for a seriously ill child is to relinquish custody to the state. U.S. Sens. Susan Collins (R-ME) and Norm Coleman (R-MN) and U.S. Reps. Patrick Kennedy (D-RI) and Pete Stark (D-CA) have introduced the Keeping Families Together Act (S. 1704 and HR 3243), which would help enable children to stay with their families.
Under the legislation, a $55 million federal matching grant program would be established over the next two years. States could use the funds to expand public insurance coverage, provide more training for mental health care providers, or create a family advocacy center for parents of mentally ill children.
Ms. Collins says the bill is one element in a four-point plan she is pushing to help families who have been forced to relinquish custody of their children to be able to get them the treatment they need for bipolar disorder, schizophrenia, or other serious mental health conditions.
The bill would establish an interagency task force to better coordinate care so that children suffering from mental illnesses wouldn’t have to enter the child welfare or juvenile justice systems to get treatment.
Additional legislation supported
Ms. Collins says she also is backing the Family Opportunity Act, a bill that would allow states to create a new Medicaid eligibility category to cover children with physical or mental illnesses whose families don’t qualify financially for the program, with coverage offered on a sliding scale; the Mental Health Equitable Treatment Act of 2003, a mental health parity bill that would require insurers to cover mental illness the same way physical illnesses are covered; and the Child Healthcare Crisis Relief Act, which would provide incentives such as scholarships and student loan forgiveness programs for mental health providers who come to work in rural areas.
In a statement she made at a July 17 Senate Governmental Affairs Committee hearing on custody relinquishment, Ms. Collins said that testimony from parents about what they face "makes it clear that custody relinquishment is merely a symptom of a much larger problem — the lack of available, affordable, and appropriate mental health services and support systems for these families."
As bad as custody relinquishment is, it is even worse when the treatment services provided to children and youth whose parents have yielded custody to the state are of poor quality. Congress’ General Accounting Office (GAO) has found and described many instances of inadequate mental health services being provided to young people.
Reporting on a GAO survey of states, GAO Education, Workforce, and Income Security Issues director Cornelia Ashby told the Senate committee that neither the child welfare nor the juvenile justice system were designed to serve children who have not been abused or neglected, or who have not committed a delinquent act. "According to officials in the six states we visited," Ms. Ashby said, "limitations of both public and private health insurance, inadequate supplies of some mental health services, difficulties accessing services through mental health agencies and schools, and difficulties meeting eligibility rules for services influence such placements [more than 12,700 children in fiscal year 2001]. Despite guidance issued by the various federal agencies with responsibilities for serving children with mental illness, misunderstandings among state and local officials regarding the roles of the various agencies that provide such services pose additional challenges to patients seeking such services for their children. Officials in the states we talked to identified practices that they believe may reduce the need for some child welfare or juvenile justice placements. These included finding new ways to reduce the cost of or fund mental health services, bringing services into a single location to improve access, and expanding the array of available services. Few of these practices have been rigorously evaluated."
No one tracks children involved
Ms. Ashby reported that although no state or federal agency tracks the children or maintains data on their characteristics, there is general agreement that most are male, adolescent, and often have multiple problems. Many of the children exhibit behavior that threatens their safety and the safety of others, according to Ms. Ashby. In addition, officials who were interviewed said that children who were placed came from families of all financial levels and that the seriousness of the child’s illness strained the family’s ability to function.
She described programs in several states that are trying innovative approaches to deal with the problems. One recommendation from state officials, she said, is to better match children’s needs to the appropriate level of service. For instance, under New Jersey’s Systems of Care Initiative, the state contracted with a private nonprofit organization for a variety of services, such as mental health screenings and assessments to determine the level of care needed, authorization of service, insurance determination, billing, and care coordination across all agencies involved with the children.
As another cost-saving method, Ms. Ashby said, some programs substituted nontraditional and less expensive providers for expensive traditional mental health providers. Thus, Uniting Networks for Youth, a private county-based provider in Minnesota, used two commercially available highly structured programs that allowed them to substitute lower-credentialed, bachelor-level staff under the supervision of a masters-level clinician as the primary service provider instead of using higher-level clinicians.
In addition to reducing the cost of services, officials in the six states interviewed by the GAO identified the blending of funds from multiple sources as another way to pay for services, thus working around agencies’ limitations on the types of mental health services and placement settings each can fund. In a Maryland county, a coordinating council blends funds from several agencies to provide community-based services to children with a mental illness involved with the judicial, child welfare, and mental health systems and with school district special education programs. GAO says that the council, headed by a judge, leveraged funding by inviting key decision makers who could commit resources from various agencies to serve on the council.
Providing nontraditional services
Officials from four of the six states visited suggested that the use of flexible funds, with few restrictions, helped pay for nontraditional services not generally allowable under state guidelines. For example, Arkansas’ Together We Can Program used flexible funds from a federal Social Services Block Grant, state general revenues, and the Title IV-B program to provide an array of nontraditional support services such as in-home counseling, community activities, respite care, mentoring, tutoring, clothing, and furniture to help families care for their children at home and support the children in the community.
GAO reported that in an effort to improve access to mental health services and bring clarity to a confusing mental health system, three of the states developed a single point of entry into the mental health system. Typically, several agencies are housed together in a facility and children are assessed with a common instrument and are eligible for the same services no matter which agency has primary responsibility for them.
Officials of Kansas’ Shawnee County Child and Family Resource Center said it is a model for the rest of the state, housing workers from 11 social service agencies. Case managers at the center assess the psychological, educational, and functional needs of referred children, determine appropriate services and placements, make referrals, provide direct counseling services, and determine how to pay for the services.
Locate services in public facilities
Officials in the six states visited by GAO auditors said that co-locating facilities in public schools and community centers also can improve access. In Harford County, Maryland, mental health services are co-located in an elementary school specifically to improve access to care for students with a mental illness. Using county health and mental health funds, the school developed an in-house mental health clinic that provides mental health services through a bachelor-level social worker, a nurse practitioner, and consultative services from a physician and a psychiatrist.
The school also provides support staff to students with a mental illness including a guidance counselor, a behavior specialist, a home visitor who supports families and assesses the home situation, and a pupil personnel worker who visits homes and helps with transportation issues.
The school has several programs available to students with a mental illness, including an intensive, in-school program staffed with a full-time psychologist; a mentoring program run by paid school staff, high school students, and community volunteers; a program that provides counseling, tutoring, recreation, social skills groups, home visits, referrals, and some psychiatric rehabilitation services; a program to identify elementary school children with a mental illness and increase their access to services; and two collaborative programs with contracted mental health providers that offer community support and prevention services and intensive case management services.
Officials in all six states reported that expansion of the number and range of community-based services to provide an entire continuum of care would improve treatment for children with a mental illness. Examples included early intervention with babies who appear at risk, diversion away from the juvenile justice system, transitional services to help children leaving a residential setting and returning to the home or community, and crisis intervention.
GAO called for federal agencies to work together to help solve the problems, noting that while states and counties are implementing practices that may reduce the need for parents to place their children with child welfare or juvenile justice agencies, many of the programs are new and small and only serve children in specific localities. Also, according to Ms. Ashby’s testimony before the Senate committee, their effectiveness in achieving their multiple goals has not yet been fully evaluated. "Given that states and localities are developing new approaches to meeting the needs of children with mental illness," Ms. Ashby testified, "it is important that the federal government continue its role in supporting evaluations of these programs and disseminating the results."
Two leading mental health advocacy groups — the Bazelon Center for Mental Health Law and the National Alliance for the Mentally Ill (NAMI) — are strongly supporting the Keeping Families Together legislation. A Bazelon statement said the bill "represents an important step toward meeting the needs of these children and promotes an alternative to the closed doors and fragmented systems that too many parents face when they seek help for their children."
The center said that when children with mental or emotional disorders can’t access the help they need, "appalling and entirely preventable outcomes are the result. They and their families suffer through unnecessary crises, which can lead to school failure; traumatic out-of-home placements; and in some cases, arrest or suicide. Not one family should feel they have to relinquish custody of their child to obtain needed mental health services. Yet thousands of mothers and fathers across the nation have surrendered their influence on key aspects of their children’s lives to access public mental health services for their children. In the process, too many children have been traumatized, often feeling abandoned by parents who only tried to act in their child’s best interests."
NAMI Child and Adolescent Action Center director Darcy Gruttadaro said, "Mental illness affects one out of four American families. No one is immune. To get the treatment a child needs, no family should be torn apart. No child should be left behind. This bill is a down payment on building a better mental health care system. It is a first step toward ending a system in shambles."
And Ms. Collins said that, "Parents should not be bounced from agency to agency, knocking on every door they come to, in the hope that they will happen upon someone who has an answer. It simply should not be such a struggle for parents to get services and treatment for their children."
[Contact Ms. Collins at (202) 224-2523, Bazelon Center at (202) 467-5730, and NAMI at (703) 516-7993. Download GAO’s reports from www.gao.gov.]
Four members of Congress are attempting to help families whose only option for obtaining mental health help for a seriously ill child is to relinquish custody to the state.
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