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Statement by Jacqueline L. Shannon, President, Board of Directors, National Alliance for the Mentally Ill
NAMI commends Senators Charles Grassley (R-IA) and Edward Kennedy (D-MA) and Representatives Pete Sessions (R-TX) and Henry Waxman (D-CA) for today introducing the "Family Opportunity Act of 2001" to help families with children who have severe and chronic disorders, including the early-onset of mental illnesses.
This legislation stands for stability and hope for the future. It will establish a Medicaid option in which families can be charged for healthcare on a sliding scale, with maximum out-of-pocket limits adjusted to income. It is a first step, and an important one. The bill's demonstration title allows States to "reason their way" to reform. NAMI hopes that ultimately the option will apply to all State Medicaid plans.
As the nation's largest organization representing families with children or adolescents living with severe mental illnesses, NAMI knows only too well the terrible choices families often must make to secure necessary treatment. After paying for medical and support services for an ill child, beyond the limits of health insurance coverage, many parents have lost homes or been forced to drain savings once planned for the higher education of other children or for their own retirement. Some have been forced to give up custody of their children in order obtain necessary treatment from the state.
Mental illnesses can shatter the American dream, but this legislation will strengthen people's hope in that dream-based on the work ethic and the strength of families and communities pulling together. It offers opportunity for families in need, and an opportunity for Congress and the new Administration to act affirmatively, based on bipartisan values.
Last year, important strides occurred with the legislation. This year, Congress should pass it, and the President should sign it.
The sooner, the better.
Approximately 850,000 children today are enrolled in the Supplemental Security Income (SSI) program, based on stringent criteria for childhood disabilities. If family incomes increase too much, these children lose SSI and Medicaid benefits. Families that try to improve their financial position risk losing their child's healthcare coverage. An enormous, unfair disincentive is created that undermines hope for renewed family stability or progress while managing a chronic illness.
A 20-state survey has reported that 64 percent of families with children with special needs are forced to turn down jobs, raises and overtime. They cannot save money for the future. Instead, they stay locked in the income bracket that qualifies their child for SSI and Medicaid. As a result, fewer than one in 25 families ever leave the SSI program through upward economic mobility.
This bill addresses that problem.
We need to support families and children who struggle with chronic mental illness. We need to help them rather than penalize them. We need to put an end to intolerable situations in which both a family and their future are crushed financially.
This legislation will do that.
NAMI members will work for its passage, building on the progress made last year.
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