July 14, 2000

No. 195

Hearing Before the Senate Budget Committee
Three parents recounted their struggles before a Hearing of the Senate Budget Committee on Wednesday, 12 July, which is considering the Family Opportunity Act. Parents provided heart wrenching accounts of the importance of and need for this family supportive legislation. Parents shared how the bill would benefit thousands of families nationwide who must turn down job promotions and pay raises and, in some cases, face the threat of relinquishing custody of their child in order to keep their children eligible for much needed Medicaid.

Excerpts From Testimony
When Air Force Staff Sergeant Gordon Fay from Alabama learned he would receive a promotion, he was elated-until he  realized the extra pay meant his daughter, Lauren, who has Angelman Syndrome, would no longer be eligible for Medicaid. "The fear that I might lose Medicaid...will now be a reality in approximately 6 to 8 months because the promotion will take me above the income threshold. The extra money that I would gain from the promotion would not come close to offsetting the costs of necessities for Lauren, such as-diapers, medicine, medical equipment, therapies.'' Rebecca Eichorn, an Oregon mother of three, told of her daughter, Julia, who has bipolar disorder. The family attempted to enroll her in a day treatment program when she was 7 to keep her united with the family. After a two-year wait to get in, the school resisted. "The school district said it would not pay for her placement because she had been stabilized," Rebecca said. Two months later, Julia was found with a rope around her neck, and the family was forced to turn her over into state custody. She is now back living at home.

"These families are forced to make impossible choices that no parent should have to make,'' said Senator Kennedy (D-MA). Representative Pete Sessions (R-TX) told of his experiences as a parent of a son with Down Syndrome. "Our family has been fortunate in that Alex has been able to receive the care that he has needed. However, many families face similar situations, without the ability to access the critical health care coverage that their child's disabilities require.'' Arkansas Governor Mike Huckabee said the measure "places government on the side of the people where it should  belong.''

House Introduces Companion Bill
At a Press Conference that afternoon, Representative Sessions introduced the House's version of the Family Opportunity Act (H.R. 4825). Along with Representative Sessions, the primary sponsors are: Representatives Fred Upton (R-MI), Henry Waxman (D-CA), and Thomas Barrett (D-WI). Jackie Golden, of NPND, was the designated parent to speak on behalf of parents. (Access the NPND website for more details on both the Hearing before the Senate Budget Committee and the House introduction of the Family Opportunity Act, including a list of presenters and witnesses.)

ACTION NEEDED
Families need this Bill. This piece of legislation benefits all of our families. Let's all lend our support. Contact your Senators and Representatives and urge them to co-sponsor this family supportive legislation: (S. 2274-Senate and H.R. 4825-House). We need co-sponsors

CONTACT INFORMATION
www.senate.gov / U.S.Capitol Switchboard: 202-224-3121
www.house.gov /U.S. Capitol Switchboard: 202-224-3121

NPND WELCOMES LINDA SHEPARD!!!!

     During the first Working Group meeting on IDEA '97, an advocate, self advocate and Mom attended. She spoke with passion and knowledge, and carried the voice of parents from Georgia. This began Linda Shepard's ongoing connection and frequent visits to Washington, D.C. Linda found she had a voice and a message, and, more importantly, a desire to advocate on behalf of families and their children with disabilities, and parents with disabilities, not only at the state level, but also at the national level. 
     Linda will move this passion and voice to Washington, D.C. to become the next leader of the National Parent Network on Disabilities. The NPND Board of Directors has elected Linda to be the new executive director effective September 1, 2000. She brings with her a funny sense of humor, an enormous loud force, and to her leadership, a strong conviction and drive. She knows the field and approaches tasks with courage and capability.