Lifespan Respite Care Act of 2003 - Letter 2
As a caregiver, I am writing to urge your support for the
Senate-passed Lifespan Respite Care Act of 2003 (S.538), championed by
Senator Warner (R-VA), which has been referred to the House Committee on
Energy and Commerce, then to the Subcommittee on Health.
Iíve also received a call from Congressman Smithís office
regarding this matter. Please
urge your colleagues on the Committee to discharge the Senate-passed bill
quickly for House floor consideration.
I am the parent of a special needs child.
My daughter Stephanie was born with end stage renal disease and
received a secondary diagnosis of autism.
Even if her medical problems remain stable and she survives, she
may require lifelong care due to neurological impairment.
I am also the Caregiver Community Action Network volunteer for NJ
for the National Family Caregivers Association.
I do this in addition to my 2-parttime jobs.
While my daughter is in school, I also do advocacy as the NJ
Coordinator of Family Voices national network speaking on behalf of
children with special needs. After
my husband comes home from work, I work evenings and weekends as a project
supervisor at Mathematica Policy Research. I am no longer able to work 9-5 as my daughter was homebound
as medically fragile til age 6 Ĺ, and although she is now in school, she
was out sick 11 times last year and each instance can last 2-3 weeks.
Over 25 million caregivers nationwide currently provide about $250
billion worth of continuous care to their loved ones, including young
children, adult children, spouses and aging family members and friends
with disabilities and chronic health conditions.
We, like many others, are a middle class family and didnít
qualify for any assistance, yet did not have the resources to hire help
directly. As my husband works
days and I work eves/weekends, one of us is always caring for our
daughter. We had no family to
help so we didnít go anywhere except work and home.
Respite has been shown to help alleviate the stress associated with
caregiving and minimize or delay the need for more costly out-of-home
placements. 75% of caregivers
experience depression. Most
nursing home placements occur not because of the family memberís health
decline but due to caregiver burnout.
Research has shown that family supports enable the person with a
disability to remain in the home which is mutually beneficial to the
family and the government. Katie
Beckett Medicaid waivers and other family supports help keep the
individual in their natural environment and costs less than residential
placement. Enactment of S.
538 will help make respite available and accessible to family caregivers.
Thank you for your time and consideration.