The Family Opportunity Act of 2001 (S. 321)
On February 8, 2001, Senators Charles Grassley (R-IA) and Edward M. Kennedy (D-MA) introduced the Family Opportunity Act, also referred to as the “Dylan Lee James Act”, S. 321. This landmark legislation 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. As many NAMI members know firsthand, families are often tragically forced to give up custody of their children to obtain the most appropriate treatment services for them. This legislation offers stability and recovery to children with severe and chronic disabling disorders, including early-onset mental illnesses and is a measure that will help put an end to this horrible choice that loving and caring families must make in cases where there has been no abuse or neglect.
The Family Opportunity Act restores hope for children with severe mental illnesses and their families. Under the bill, states would be able to offer Medicaid coverage to children with severe disabilities living in middle income families through a buy-in program. Cost-sharing on a sliding scale up to the full premium cost will be required within certain guidelines that protect lower income families. Currently, families must stay impoverished, place their child in an out of home placement or simply give up custody in order to secure the health care services their child needs under Medicaid.
S. 321 also authorizes a new time-limited demonstration program that will allow states to extend Medicaid coverage to children with potentially severe disabilities who, without access to the health care services available through Medicaid can be reasonably expected to become severe enough to qualify them for SSI. Another key provision would allow states the option to include children receiving hospital psychiatric services in home and community-based waivers. Finally, S. 321 would establish “Family to Family Health Information Centers.” These programs would assist and support families of children with disabilities and/or special health care needs. These centers, staffed by both parents of children with special needs and professionals, would provide technical assistance and information to families on health care programs and services available and appropriate for children with disabilities and/or special needs.
All NAMI members and advocates are urged to contact their Senators, especially if they are members of the Senate Finance and Budget Committees, and encourage them to support and cosponsor S. 321. All members of Congress can be reached by calling the Capitol Switchboard at 202-224-3121 or by going to the policy page of the NAMI web site at www.nami.org/policy.htm and click on "Write to Congress."
As too many NAMI families know though their own experience, paying for treatment and supports for their child or adolescent with a serious brain 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 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, 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 1 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 twenty-five of these families ever leave the SSI rolls through upward economic mobility.
NAMI’s landmark report, Families on the Brink, sets forth how this lack of access to treatment results in potential lasting harm to the affected children and their families and broad dissatisfaction with treatment options and capacity. “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, fifty-five 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.” – Executive Summary.
Are your Senators cosponsors of this legislation that will help children and families? If yes, please call and thank them for their support. If your Senators are not on this list, please call their office and urge their support and co-sponsorship of S. 321.