National Alliance on Mental Illness
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(800) 950-NAMI; email@example.com
For Immediate Release, July 13, 2000
Contact: Chris Marshall
Yesterday, Chairman Pete Domenici (R-NM) held a hearing of the Senate Budget Committee on The Family Opportunity Act of 2000 (S. 2274). This important legislation was introduced by Senators Ted Kennedy (D-MA) and Charles Grassley (R-IA), and has gained the support of 55 Senate cosponsors. This legislation will help families by offering Medicaid coverage on a sliding fee scale to children with severe disabilities living in middle-income families that are unable otherwise to pay for necessary healthcare. For further detail on S. 2274, please refer to NAMI E-News Vol. 00-106 and Vol. 01-03.
The first panel testifying at the hearing included Senator Kennedy, Representative Pete Sessions (R-TX), and Governor Mike Huckabee of Arkansas. Governor Huckabee, who was representing the National Governors' Association (NGA) strongly endorsed S. 2274 as a way to assist States in helping families and children with disabilities, and further pledged to work with members of Congress in enacting The Family Opportunity Act of 2000.
The second panel presenting testimony to the Committee were family members who told compelling, yet all too common stories of being denied access to treatment for their children with disabilities due to a lack of resources. Families have had to file for bankruptcy, lose their homes, and give up jobs and promotions in order to get health care services for their children. Rebecca Eichorn, of Oregon, gave testimony that is familiar to many NAMI families. Her 17-year-old daughter, Julia, is diagnosed with bipolar disorder. Ms. Eichorn and her family have filed for bankruptcy twice, lost their home, and the most devastating-had to give up legal custody of their daughter, twice.
Also testifying was Sgt. Gordon Fay of the United States Air Force who reported to the committee that a promotion he is eligible for will make his daughter, 9-year-old Lauren who has Angelman's syndrome, ineligible for SSI and Medicaid, which supplies her much needed medication, therapy, and medical supplies. Tonya Baker McCue, a mother of two children born with cystic fibrosis, had to raise $150,000 on her own to pay for the necessary surgery for her son. Fortunately, through community and national support, her son received the heart and lung transplant he desperately needed. However, she spent the last year of his life battling for his health care services and struggling to raise the money to pay for them.
William J. Scanlon, on behalf of the General Accounting Office (GAO), presented testimony that clearly demonstrates the need for legislation such as The Family Opportunity Act of 2000. The GAO testimony states that in December of 1999, 850,000 children were receiving Supplemental Security Income (SSI) benefits, which represents 18% of the 4.7 million children with chronic physical or mental conditions. Although Medicaid generally covers children with disabilities who receive SSI benefits, in 1999, over 120,000 children who met the requirements for disability were initially denied eligibility when they applied, or later had their benefits suspended because their family's income or resources had exceeded SSI limits. Mr. Scanlon also documented how "limited mental heatlh coverage in parents' private insurance plans can create an incentive to use foster care arrangements as a means of obtaining or maintaining access to Medicaid." The GAO testimony, Children With Disabilities: Medicaid Can Offer Important Benefits and Services (GAO/T-HEHS-00-152) is available by visiting the GAO web site at www.gao.gov Click on GAO Reports and then click on New Testimony.
Last to testify was Dr. David Alexander, medical director for the Des Moines Children's Hospital, who also shared many stories of families who have been financially and emotionally devastated by the lack of access to health care because of financial barriers.
Members of Congress saw first hand the tragedies many families face in trying to access needed health care services for their children. In 1999, NAMI's report, Families on the Brink, highlighted the devastation that families were experiencing by being told that giving custody of their children to the state was the only way to get services for them. NAMI clearly identified the need for legislation to eliminate the disincentives for families with chronically ill children who risk losing health coverage for their children if they try to improve their families' financial position. The NAMI report found that 31% of survey respondents stated that they had been told they would have to relinquish custody of their child in order to receive services. 14% actually gave up legal custody of their child to maintain access to services.
In May of 2000, NAMI announced its partnership with the newly established Center for the Advancement of Children's Mental Health - a national center dedicated to improving identification, assessment and treatment practices for children with mental disorders - to address these issues. For more information, please refer to the May 12, 2000 NAMI E-News, Vol.00-132.
This landmark legislation offers stability and recovery to children with severe and chronic disabling disorders, including early-onset mental illnesses. For more information on S. 2274, The Family Opportunity Act please visit our web site at www.nami.org/policy.htm.
All NAMI members and advocates are urged to contact their members of Congress and encourage them to support and cosponsor S. 2274 in the Senate and HR 4825 in the House. Listed below is a current list of Senate cosponsors of The Family Opportunity Act of 2000. If your Senator(s) are on the list, send them a note thanking them for supporting this important legislation. While Congress is finishing up the year's business, it is important that NAMI makes its voice heard in the limited time left in this congressional session. 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."
List of Senate Cosponsors:
Sen Akaka, Daniel K. (D-HI)