The Family Opportunity Act Of 2000

Posted on March 22, 2000

NAMI commends Senators Charles Grassley (R-IA) and Edward Kennedy (D-MA) for their vision in following enactment of the Ticket to Work and Work Incentives Improvement Act (TWWIIA) with the introduction of similar legislation to allow many more families to escape the problem of "job lock." Today's legislation offers stability and recovery to children with severe and chronic disabling disorders, including early-onset mental illnesses.

Mental illnesses are biological brain disorders, and must be treated equally with disabilities involving any other bodily organ or system. Health insurance plans must not discriminate in amount, duration, or scope between mental illnesses and other diagnoses.

NAMI knows only too well the terrible choices families must make. Through years of paying medical and support expenses beyond their health plan coverage's for their ill children, many families have lost homes, savings for their children's higher education, for their retirement, and nearly lost hope.

The Family Opportunity Act restores hope. It maintains family responsibility for the provision of care to a disabled child by requiring states which choose this proposed Medicaid option to charge families on a sliding scale with maximum out-of-pocket limits adjusted to income. It puts an end to the current, intolerable situation in which families are crushed financially. It is a well-considered first step. NAMI hopes that it eventually will be applied to all state Medicaid plans. The demonstration title of the bill should help states to "reason their way" to reform.

Approximately, 850,000 children are enrolled in the Supplemental Security Income program, having satisfied the stringent criteria for childhood disability. Significant proportions are disabled by mental disorders other than retardation. If family incomes increase by too much, these children lose their SSI and Medicaid benefits. The policy creates an enormous, virtually insurmountable, disincentive for families with chronically ill children, who risk losing health coverage for their children if they try to improve their family's financial position.

The bill summary cites a recent 20-state survey that has reported that 64 percent of families with special needs children "are turning down jobs, turning down raises, turning down overtime, and are unable to save money for the future of their children and family-so that they can stay in the income bracket that qualifies their child for SSI and Medicaid." Consequently, fewer than one in twenty-five of these families ever leave the SSI rolls through upward economic mobility.

Too often, families are forced to give up custody of their children to obtain health care services for them. NAMI welcomes the Family Opportunity Act as a measure that will help put an end to this horrible choice for loving and caring families in which there has been no abuse or neglect. We will ask our 210,000 members nationwide to work for its passage.