National Alliance on Mental Illness
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Children and Adolescents Living With Mental Illnesses

As NAMI families know through their own experience, paying for treatment and supports for their children or adolescents with a serious mental disorder can quickly wipe out employer provided health coverage. In many cases, strict limits on health insurance coverage mean that plans either refuse to pay for intensive treatment, or impose restrictions that can render coverage meaningless. Efforts to achieve insurance parity are helping many families, but most private health plans routinely deny coverage for the specialized, intensive services that children and adolescents with the most severe mental illnesses need (including residential services) because they do not meet the plan’s "medical necessity" criteria.

Once insurance coverage is either exhausted or denied, parents often face the prospect of losing their jobs, their homes, and their savings for college education and retirement to pay for their child’s treatment. Most tragic of all, families are sometimes forced to relinquish custody of their children to the state to establish eligibility for public programs such as Medicaid. A 20-state survey reported that 64% of families with children with special health care needs (including children with mental illnesses) are turning down jobs, raises, and overtime - and are unable to save money for the future of their children and family – so that they can remain in the income bracket that qualifies their child for Supplemental Security Income (SSI) and Medicaid. Consequently, fewer than 1 in 25 of these families ever leave the SSI rolls through upward economic mobility.

NAMI Supports the Family Opportunity Act (S 622/HR 1811)

The Family Opportunity Act (FOA) is intended to end the financial devastation that families too often encounter in attempting to access quality treatment for their children with severe mental illnesses. This legislation restores hope for children with severe mental illnesses and their families. The bill allows states to offer Medicaid coverage to children with severe disabilities living in families with incomes up to 250% of poverty, by allowing those families to buy into the Medicaid program. The bill requires cost sharing on a sliding scale up to the full premium cost of care, with protections for lower income families and allows states to include coverage for children receiving hospital psychiatric services under home and community-based Medicaid waivers. It also calls for establishing "Family to Family Health Information Centers" to assist and support families of children with disabilities and special health care needs.

S 622 has cleared the Senate Finance Committee and now awaits a full vote on the Senate floor. NAMI urges all Senators to contact Majority Leader Bill Frist (R-TN) and demand that the FOA be brought to the full Senate early in 2004. NAMI also opposes amendments that would weaken the bill. S 622/HR 1811 is needed to ensure that families are not forced to stay in low paying jobs to retain their Medicaid benefits and more importantly, to ensure that families are not forced to relinquish custody of their children to secure mental health services.

NAMI Supports The Keeping Families Together Act (S 1704/HR 3243)

An April 2003 General Accounting Office (GAO) report documented that thousands of families across the country are forced to give up custody of their children to the child welfare and juvenile justice systems to secure mental health services. In response, a bipartisan coalition in both the House and Senate have developed legislation – the Keeping Families Together Act – to keep children with mental illnesses who are in need of services at home and in their communities and most importantly, with their families. This important legislation includes a new grant program, the establishment of a federal interagency task force and a statutory correction to Medicaid. Among the key provisions in S 1704/HR 3243 are:

  • A new grant program for financial incentives to states to build effective systems of care for children with mental illnesses and their families. The existing system of care for children in most states places a heavy emphasis on costly residential services and often requires families to transfer custody of their children to the state to access these costly services. Most families cannot afford these services. This bill provides states with the funds they need to build a more efficient system of care with an important emphasis on providing home and community based services;
  • Matching funds over the six-year period of the grant program, while also requiring states to develop a plan that brings together state child-serving agencies, parents and other key stakeholders;
  • A new interagency task force – with the Substance Abuse and Mental Health Services Administration (SAMHSA) as the lead agency - to examine and make recommendations related to mental health issues in the juvenile justice and child welfare systems;
  • Removal of existing statutory barriers that prevent more states from using the Section 1915 (c) Medicaid home-and community-based service waiver (HCBW) to serve children with mental illnesses in residential treatment facilities (currently only three states use the HCBW for services for children with mental illnesses – Kansas, New York and Vermont). In Kansas, data shows that the services provided under the HCBW cost considerably less than services provided in residential facilities or hospitals.

S 1704/HR 3243 eliminates a cruel choice that thousands of parents have faced – accessing mental health treatment or retaining custody of their child. Parents who choose desperately needed treatment and lose custody also lose the right to make important day-to-day decisions in their child’s life, including decisions about their child’s education, religion, treatment and others. Children who are already suffering from a serious illness are left feeling abandoned in their hour of greatest need. NAMI urges support of this important legislation to end the unthinkable practice of forcing parents to choose between their child and access to mental health treatment.

Addressing Critical Workforce Shortages -- Child Healthcare Crisis Relief Act (S 1223/HR 1359)

NAMI families and grassroots leaders know all too well the crisis that our nation faces in the shortage of qualified mental health providers to treat children and adolescents with mental illnesses. Former U.S. Surgeon General Satcher highlighted this crisis in the seminal 1999 report -- Mental Health: A Report of the Surgeon General. According to that report, 13.7 million or 20% of our nation’s children and adolescents have a diagnosable mental illness – with 6 to 9 million or 9 to 13% having a mental illness that causes serious impairment. Tragically, in any given year, only 1 in 5 of these youth receive mental health treatment.

The lack of qualified mental health providers is a major factor contributing to the unacceptably high number of youth with mental illnesses who fail to receive treatment. The lack of qualified mental health providers also contributes to long waiting lists for services for a seriously ill child. The consequences of untreated mental illnesses in children are devastating. These youth are at higher risk for school failure and drop out, alcohol and drug use, suicide (the 3rd leading cause of death for 10-24 year olds), and other high risk activity.

The Child Healthcare Crisis Relief Act (HR 1359/S 1223) is a critically needed response to the crisis in the shortage of children’s mental health providers. Among the provisions in the legislation are: 1) loan repayments, scholarships, and grants to help recruit and retain child mental health professionals providing direct clinical care, and 2) Graduate Medical Education (GME) program extension to increase the number of Child and Adolescent Psychiatrists (extending the Board Eligibility period for residents and fellows from four to six years). NAMI urges all members of Congress to support this important legislation.

January 2004