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Family Opportunity Act Update: Grassroots Effort Needed For Final Push Before Congressional Adjournment

For Immediate Release, October 19, 2000
Contact: Chris Marshall

As members of Congress scramble this week to complete action before final adjournment, sponsors of the Family Opportunity Act of 2000 (S 2274/HR 4825) are making a last minute effort to add the bill to separate legislation allocating $28 billion to providers and health plans participating in the Medicare program. S 2274/HR 4825 would allow states to establish programs to help families of children with severe disabilities access Medicaid coverage for their children - without having to go into poverty or give up custody.

The separate bill the sponsors of the FOA are attempting to add their proposal to is a measure designed to make up for higher than expected cuts to providers that were enacted as part of the Balanced Budget Act (BBA) of 1997. While this Medicare BBA "give back" bill (HR 5291) is extremely popular, the White House has threatened a veto because of what the President views as excessive payments to HMOs participating in Medicare.

In a bipartisan letter sent to President Clinton and congressional leaders on October 16, the sponsors of the FOA demanded that their bill be added to HR 5291. Members of Congress signing the letter include: Senators Charles Grassley (R-IA) and Edward Kennedy (D-MA) and Representatives Pete Sessions (R-TX), Fred Upton (R-MI), David Dreier (R-CA), Tom Barrett (D-WI) and Henry Waxman (D-CA). For its part, the Clinton Administration has expressed support for the bill and has included it in a list of health care related bills they are demanding that Congress pass before final adjournment. While the President has a great deal of leverage in these final budget negotiations, strong grassroots support for the FOA is needed in order to get the bill added to HR 5291, or any other "must pass" bill.


NAMI advocates are strongly encouraged to contact all members of Congress and urge them to support inclusion of the FOA in the Medicare BBA Relief Act (HR 5291). Urge your members of Congress to directly contact congressional leaders and the White House to demand that S 2274/HR 4825 be added to final budget legislation before adjournment. NAMI advocates should also contact congressional leaders to voice support for the FOA. Finally, NAMI advocates are urged to contact the White House to demand that President Clinton maintain his commitment to this legislation by rejecting any final budget agreement or Medicare provider relief bill that does not include the FOA.

Contacts for the White House and congressional leaders:

House Speaker Dennis Hastert (R-IL) phone:202-225-2976, fax: 202-225-0697

House Minority Leader Richard Gephardt (D-MO) phone 202-225-2671; fax 202-225-7452

Senate Majority Leader Trent Lott (R-MS) phone 202-224-6253; fax 202-224-2262

Senate Minority Leader Tom Daschle (D-SD) phone 202-224-2321; fax 202-224-2047

All members of the House and Senate 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 and click on "Write to Congress." District and Washington office numbers can be found in your local phone book or through

The White House can be reached by calling 202-456-1414 or through the White House website at: Urge President Clinton not to let Congress adjourn without passing the Family Opportunity Act.

Included below is a letter that NAMI sent yesterday to President Clinton in support of the FOA. Advocates are encouraged to e-mail and/or fax similar letters to congressional leaders and the White House.

Background on the Family Opportunity Act

As described in previous NAMI E-News, the Family Opportunity Act (S 2274/HR 4825) is intended to restore hope for families of children with severe disabilities, including the parents of children with serious brain disorders. The bill would allow states to set up Medicaid buy-in programs for families with children with severe disabilities so that parents would not be forced to relinquish custody of their children or declare bankruptcy in order to establish eligibility for Medicaid in order to access coverage for treatment services. More information on S 2744 and HR 4825 can be found at: and

October 19, 2000

The Honorable William Jefferson Clinton
President of the United States
Washington, DC 20500

Dear Mr. President:

On behalf of the 220,000 members and 1,200 affiliates of the National Alliance for the Mentally Ill (NAMI), I am writing to urge you to place the highest priority on congressional passage Representative Pete Sessions' Family Opportunity Act (S 2274/HR 4825) in the few remaining days of the 106th Congress. As the nation's largest national organization representing individuals with severe mental illnesses and their families, NAMI believes that the Family Opportunity Act is a tremendous step forward in helping families of children and adolescents with disabilities access the treatment they need.

S 2274/HR 4825 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.

As too many NAMI families know though their own experience, paying for treatment and supports for their child or adolescent with a severe mental illness 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.

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 1999 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.

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.

This landmark legislation also establishes "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.

NAMI strongly supports the Family Opportunity Act and urges you to make its passage the highest priority in final budget negotiations with the Congress before adjournment. Thank you for your attention in this important matter for children and adolescents with severe mental illnesses and their families.


Laurie M. Flynn
Executive Director