Lifespan Respite Care Act of 2003 - Letter 2

6/16/03  

Dear Congressman Ferguson:

    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.  I’ve also received a call from Congressman Smith’s 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 ½, 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 didn’t 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 didn’t 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 member’s 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.

Sincerely, 

Lauren Agoratus

Parent/volunteer advocate

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