PARENTS' SHINE
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. |
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"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. |
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Linda is the former Executive Director of the PTI in Georgia, Parents
Educating Parents and Professionals For All Children. She brings a wealth
of grassroots experience and knowledge. Prior to her work in Georgia, Linda
led numerous projects in the area of child neglect and abuse. She has
served on numerous boards and advisory councils. Currently, Linda is on the
Board of Directors of AAPD, American Association for People with
Disabilities; a trainer for MIUSA, Mobility International USA; and she is
working with various groups on international issues, most recently, in the
Russian republics. Linda is married to Mike Shepard, and has two adult
sons, Kevin and Keith, both of whom have disabilities.
NPND looks forward to working with Linda and wishes her well in her new
endeavor.
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The National Parent Network on Disabilities
1130 17th Street, N.W. Suite 400 * Washington, DC 20036
(202) 463-2299 * (202) 463-9403 (fax) * npnd@cs.net
/ www.npnd.org |