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Chairman Collins, Senator Lieberman and members of the Committee, NAMI would first like to thank you for holding this critically important hearing on the crisis of states forcing families to give up custody of their child with a mental illness to secure necessary services.
I am pleased today to submit the following testimony on behalf of the National Alliance for the Mentally Ill (NAMI) on the issue of custody relinquishment – the tragic practice of states and local governments forcing families to turn custody of their child with a mental illness over to the state to secure necessary treatment.
NAMI is a nonprofit, grassroots support and advocacy organization of consumers, families (including parents and caregivers of children and adolescents with mental illnesses) and friends of people with serious mental illnesses. Founded in 1979, NAMI today works to achieve equitable services and treatment for more than 15 million Americans living with severe mental illnesses and their families. Hundreds of thousands of volunteers participate in more than one thousand local affiliates and fifty state organizations to provide education and support, combat stigma, support increased funding for research, and advocate for adequate health insurance, housing, rehabilitation, and jobs for people with mental illnesses and their families.
NAMI applauds the leadership of Senator Collins (R-ME) – as Chair of the Senate Committee on Governmental Affairs -- for holding this hearing and for joining with other Congressional leaders -- Representatives Patrick Kennedy (D-RI) and Pete Stark (D-CA) – in asking the General Accounting Office (GAO) to report on this national tragedy. NAMI consumers, families and advocates are truly grateful that this committee is taking a close federal look at a system that forces families to be torn apart simply to access treatment and services for children – who often suffer from serious mental illnesses.
The GAO report – 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 – confirms that states and counties force families to give up custody of tens of thousands of children and adolescents with mental illnesses to the child welfare and juvenile justice systems to secure necessary treatment. This national tragedy exists even though those systems are not designed primarily to provide mental health care and often fail to represent a therapeutic environment for children with mental illnesses.
The GAO report supports NAMI’s landmark study -- Families on the Brink: The Impact of Ignoring Children with Serious Mental Illness, published in 1999 by NAMI, in which 20% of families surveyed reported having to give up custody of children to the state to secure treatment for their mental illnesses.
NAMI is deeply concerned with both the findings in the GAO report and with the failure of states to track and report on the number of families that are forced to relinquish custody of their child because there simply is no other way for them to secure services. The report revealed that no formal or comprehensive federal or state system exists to track the number of families asked to relinquish custody of their child to secure mental health services. In fact, the GAO report admits that figures available from 2001 understate the problem. Of those states from which the GAO could not obtain estimates, five have the greatest populations of children in the nation.
Based on estimates provided in the report from 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. That figure is likely a gross under-estimate of the problem because most states failed to provide data -- including those states with the largest population of children. Therefore, it seems quite safe to say that thousands of additional families have been impacted by this unthinkable practice.
According to the GAO report, families were forced to turn their children over to child welfare and juvenile justice systems even though none of the children had been abused or neglected – nor had they committed a delinquent act. It happened because necessary home and community based mental health services for children with mental illnesses are not available in most communities across the country.
Families from all financial levels may be forced to make the heart-wrenching decision to give up parental rights of their child 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.
The report highlights something that NAMI families know all too well – the systems designed to serve families with children with mental illnesses are not family-friendly. This often overwhelms families who require immediate and 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.
The GAO report also highlighted other issues that are quite familiar to NAMI families including the fact that school personnel often do not understand basic facts about childhood mental illnesses and are unprepared to effectively teach children with them. Also, school officials continue to blame parents for a child’s mental illness. There are also numerous barriers to treatment and services, including discriminatory caps on mental health insurance coverage, strict Medicaid eligibility requirements, and a profound shortage of mental health specialists for children.
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 stories of the families testifying at the Senate hearing represent the stories of thousands of families from across the country. These stories are quite familiar to NAMI. They include parents being blamed for their child’s mental illnesses. Parents being told by multiple state or local mental health authorities and other agencies that they do not have the resources to address the child’s treatment needs, and referrals being provided to multiple state and local agencies, including the child welfare agency. The child welfare agency in turn frequently telling families that they cannot provide services unless the child is in state custody. Parents are also told to call the police because the juvenile justice system is the only place for a child to secure treatment for a mental illness. The manner in which families – attempting to access services for their children – are being treated is truly unfortunate.
Families are also left without insurance coverage because their private insurance plan includes discriminatory and restrictive caps on mental health coverage – which families with a child with a severe mental illness quickly exhaust. Families in need of mental health treatment and services often do not qualify under the strict income and asset limits in the Medicaid programs. The testimony before the committee makes clear that families with children with mental illnesses – from across our nation -- are abandoned in their hour of greatest need.
In addition, the tragedy of custody relinquishment is well documented in numerous media accounts of families being torn apart to secure mental health services. These stories are powerful and share many of the same elements as families struggle to secure services for their child. In fact, Senator Collins decided to hold the custody relinquishment hearings after reading the Portland Press Herald/Maine Sunday Telegram series titled Castaway Children: Maine’s Most Vulnerable Kids.
The prevalence rates of youth with mental illnesses are staggering. Approximately 7-9% of all children have a diagnosable serious mental disorder, which translates into millions of youth and one or two of the children in every classroom.
--New Freedom Commission’s Interim Report, October 2002
NAMI is deeply concerned with the information reported to the President in the New Freedom Commission’s Interim Report in October, 2002. It is consistent with the research and information in the Surgeon General’s 2001 report on children’s mental health and the seminal report released in 1999. According to the Surgeon General’s report, 1 in 10 children and adolescents in the United States suffers from a mental illness severe enough to cause impairment while fewer than 1 in 5 of these children receives needed treatment. Moreover, the World Health Organization Global Burden of Disease Study indicates that by the year 2020, childhood neuropsychiatric disorders will rise proportionally by over 50% to become one of the five most common causes of morbidity, mortality, and disability among children. (WHO, 2001)
One thing is patently clear -- too many children with mental illnesses are not receiving any services. The circumstances are even worse for African-American, Latino and other youth from ethnically and culturally diverse communities. Tragically, they often bear a significantly greater burden from unmet mental health needs and thus suffer a greater loss in overall health and productivity. (Surgeon General 2001 Report on Mental Health: Culture, Race, and Ethnicity)
What are the consequences for the roughly 80% of youth with mental illnesses who fail to receive services? The long-term consequences are staggering in both human and fiscal terms. Suicide is the third leading cause of death in adolescents aged 15 to 24. (Centers for Disease Control, 1999) Over 30,000 lives are lost each year to suicide. (Commission’s Interim Report, October 2002) The evidence is strong that as many as 90% of children and adolescents who commit suicide have a mental disorder (Institute of Medicine Report, 2002 and Surgeon General, 1999).
Youth with untreated mental illnesses also tragically end up in the criminal justice system. According to a recent study – the largest ever undertaken – an alarming 65% of boys and 75% of girls in juvenile detention have at least one psychiatric diagnosis. (Teplin, Archives of General Psychiatry, Vol. 59, December 2002). The prevalence rates of children and adolescents with mental illnesses in the juvenile justice system is a moral outrage and speaks to our nation’s failure to build an effective mental health treatment system.
What is the impact of untreated and poorly treated mental illnesses in children on families? Simply put – devastating. Stigma and shame drive many families away from the treatment system. Suicide severely impacts the families left behind – who often wrongly live with extreme shame and guilt over not having prevented the death of their loved one.
NAMI is frequently contacted by families from across the country who have struggled to get treatment for their child, and in the process attempted to navigate a fragmented, broken and under-funded system. Often these families have long since exhausted their private insurance benefits for mental health coverage (90% of private health insurance plans place restrictive and discriminatory caps on mental health benefits) and paying for intensive services is simply not financially feasible. Most of these families do not qualify for Medicaid benefits. State agencies and others tell many families that the only way to access critically needed treatment is by relinquishing custody of their child to the state. This causes unthinkable stress for families, hit at their most vulnerable moment.
Some families also report being told that to access treatment or services for their child, they should either call the police and have their child arrested or leave the child at a hospital or treatment center. An arrest means that the child may receive services through the juvenile justice system and parental abandonment means that the child will be referred to the child welfare system for possible treatment. Families are suffering a great and unnecessary burden because of the lack of effective treatment for children with serious mental illnesses. We would not think to treat families with a child with another serious illness – like brain cancer – like this – it is fundamentally unjust to treat families with children with serious mental illnesses like this.
Our nation’s failure to prioritize mental health is a national tragedy.
--New Freedom Commission’s Interim Report, October 2002
NAMI applauds Senator Collins for proposing the introduction of federal legislation to address the custody relinquishment crisis in our nation. NAMI also applauds the Congressional leadership of Representatives Patrick Kennedy (D-RI) and Pete Stark (D-CA) in working to address the crisis in the children’s mental health system.
NAMI is also grateful to Senator Collins for her co-sponsorship of 3 critical pieces of legislation that, if enacted, will help to address custody relinquishment -- the Paul Wellstone Equitable Treatment Act (S. 486), the Family Opportunity Act (S. 622) and the Child Healthcare Crisis Relief Act (S. 1223).
Federal legislation and action is critically necessary to ensure that services are delivered to children with mental illnesses and their families and that families are no longer torn apart to secure services.
States clearly lack the resources and scope of understanding to do it alone. When the states cannot solve such problems, the federal government has a responsibility to act – as a partner in our federal system.
Families suffer greatly from the lack of treatment options. The system for delivering mental health services to children and their families is complex; the patchwork of providers, interventions and funding streams contributes to the lack of treatment. There is a desperate need for appropriately trained child psychiatrists, psychologists and social workers.
In addition to support for the federal legislation addressing custody relinquishment -- that Senator Collins may introduce -- and in response to the GAO report -- NAMI asks for Congressional support of the following legislation pending in Congress that can make a difference in reversing the moral, economic and political scandal of child custody relinquishment—
Federal action is also needed to encourage states to adopt Medicaid options that would help to eliminate the practice of states forcing families to give their child up to secure treatment for mental illnesses. The unfortunate reality is that only three states have adopted the first such option – the Medicaid Home and Community-Based Waiver option for children with mental illnesses. This option is only available to families in Kansas, Vermont and New York. It provides Medicaid funding for home and community based mental health services for children who require intensive and costly institutional care. The second Medicaid option is the TEFRA or Katie Beckett option – which is currently used by approximately 20 states, however in only 10 states for services for children with mental illnesses.
Both of these options are critically important for families with children with intensive service needs because families are not required to meet the income requirements for either of these Medicaid options. States need information and resources that will make it easier for them to adopt these options to help address this crisis.
The unthinkable practice of custody relinquishment is a national scandal. Federal legislation and action are critically necessary to help build a system that can provide appropriate treatment for children with mental illnesses. No child should be left behind. No parent should ever be forced to abandon their children to get the help they desperately need. Children and teenagers represent our nation’s hope for the future. Those with mental illnesses deserve to receive treatment and services in their homes and communities and close to those who love them the most.