NAMI Supports Grassley-Kennedy Bill To End Financial Devastation of Families With Children Who Have Serious Mental Illnesses

Posted on July 12, 2000

The National Alliance for the Mentally Ill (NAMI) strongly supports S. 2274, The Family Opportunity Act of 2000, and recognizes the important progress that today's Senate Budget Committee hearing represents.

We thank Senate Budget Committee Chairman Pete Domenici (R-NM) for holding this hearing, and applaud the leadership of Senators Charles Grassley (R-IA) and Edward M. Kennedy (D-MA) in seeking to end the financial ruin that families face in trying to get quality treatment for their children with severe mental illnesses.

The Family Opportunity Act of 2000 restores hope for children with severe mental illnesses and their families. Under this bill, states would be able to offer, for the first time, Medicaid coverage on a sliding scale to children with severe disabilities living in middle-income families that are unable otherwise to pay for necessary health care.

This landmark legislation offers stability and recovery to children with severe and chronic disabling disorders, including early-onset mental illnesses. Currently, families must be impoverished, place their child in an out-of-home facility or simply give up custody in order to secure adequate healthcare services. As many NAMI members know firsthand, families are often tragically forced to give up custody of their children to obtain the most appropriate treatment.

This measure will help end the horrible predicament that far too many loving and caring families find themselves in. We now call on all members of Congress to support S. 2274 and help children and families stay together.

Background On The Family Opportunity Act Of 2000 (S. 2274)

The Family Opportunity Act of 2000 (S. 2274) authorizes a demonstration program that will allow states to extend Medicaid coverage to children with potentially severe disabilities who, without access to the healthcare services available through Medicaid, can reasonably be expected to become severely disabled to the point of qualifying for Supplemental Security Income (SSI).

Through a buy-in program, families will be required to share the cost of health coverage on a sliding scale up to the full premium cost within certain guidelines that protect lower income families.

Another key provision would allow states the option to provide in-home and community-based waivers to children receiving hospital psychiatric services.

Finally, S. 2274 would establish Family to Family Health Information Centers to directly assist and support families of children with disabilities and/or special healthcare needs. These centers, staffed by both professionals and parents of children with special needs, would provide technical assistance and information to families on healthcare programs and services available to children with disabilities and/or special needs.

Paying for treatments and support services for a child or adolescent with a serious brain disorder can quickly exhaust benefits provided by employer health plans. In many cases, health 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 are still able to deny coverage of the specialized, intensive services that children and adolescents with the most severe mental illnesses need (including residential services) as beyond medical necessity. Once coverage is either exhausted or denied, families are faced with losing their jobs, their homes, and savings for college education and retirement.

Most tragic of all, families are sometimes forced to relinquish custody of their child in order to establish eligibility for public programs such as Medicaid.

Approximately one million children are enrolled in the SSI program in any given year, having satisfied the stringent criteria for childhood disability. More than 250,000 are disabled by mental disorders other than mental 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.

A recent 20-state survey 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 25 of these families ever leave the SSI rolls through upward economic mobility.

NAMI's recent report, Families on the Brink, underscores how a lack of access to treatment produces lasting harm to the affected children and their families, and broad dissatisfaction with treatment options. According to the NAMI report, "The overall picture is one of major barriers to care with devastating results for the children and the families. In more than half the families (55 percent), one of the parents had to change jobs or quit to take care of their ailing offspring. Fifty-nine percent said they felt like they were pushed to the breaking point."