Bill Clinton: “I am proud to introduce the Lifespan Respite Care Act of 2003 today, a bill to establish the availability of respite…”

“I am proud to introduce the Lifespan Respite Care Act of 2003 today, a bill to establish the availability of respite services for our family caregivers, and to increase coordination of these programs so that caregivers will be better able to access them. As a nation, we rely on family caregivers. Twenty-six million Americans care for an adult family member who is ill or disabled, Eighteen million children have a condition that place significant demands on their parental caregivers. Four million Americans with mental retardation or a developmental disability rely on family members for care and supervision. If services provided by family caregivers were replaced by paid services, it would cost nearly $200 billion annually. But these are just numbers. Every member has a human face. Let me tell you about Heather Thoms-Chelsey. I met Heather last year at a press conference announcing the Lifespan Respite Care Act of 2002. At that press conference I also met Heather's then 4-year-old daughter, Victoria, who has Rett syndrome. Victoria is totally dependent on family caregivers for all basic living skills: dressing, feeding, bathing and toileting. She also engages in self-injurious behaviors, hand-biting, head banging, body slamming, hair pulling. She has to be monitored all the time for her protection. Heather says, "I feel tired and exhausted after only less than 5 years, what will I be like in 15? Or even 20?" Heather is very resourceful.…”