Vous pouvez lire le communiqué de presse (en anglais mais il existe de bon traducteur en ligne gratuits sur Internet) ci-dessous ainsi que les commentaires d’Hillary Clinton qui adresse des remerciements très appuyés à Jill Kagan qui dirige la coalition pour l’accueil temporaire aux États-Unis (oserions-nous dire « le Grath américain » !).
Lifespan Respite Act Now Goes to President's Desk To Be Signed Into Law
Washington, DC – On Friday, December 8, 2006, Senator Hillary Rodham Clinton (D-NY) announced unanimous Senate approval of the Lifespan Respite Care Act. The Act provides $30 million in the first year and almost $300 million over five years for competitive grants for states and local bodies to increase the availability of respite care services for family caregivers of individuals with special needs regardless of age. The bill also promotes a coordinated system of accessible respite care at the state and federal level. The announcement comes just days after the House of Representatives passed its version of the bill sponsored by Representatives Michael Ferguson (R-NJ) and Jim Langevin (D-RI). The bill now goes to the President's desk to be signed into law.
"As a nation, we cannot afford to ignore the struggles faced by the millions of selfless Americans who provide care for a family member with a chronic illness or disability. This legislation will make a real difference in the lives of millions of Americans and I am proud that we have made this important step forward for caregivers and their families,” said Senator Clinton.
Although much of family caregiving is unpaid, it is not without cost.
Family caregivers provide about 80 percent of all long-term care in the US at a value estimated at over $300 billion annually. Food, medicines and other caregiving necessities place added strain on already tight family budgets. Also, it is difficult for caregivers to find or maintain jobs because of their responsibilities at home, which can make it a struggle to stay afloat. This bill will help alleviate this financial burden.
Each year, 44 million Americans care for an adult family member who has a chronic illness or disability. Nearly four million Americans of all ages, who have mental retardation or another developmental disability, live with their families.
Senator Clinton has worked tirelessly to address the needs of caregivers.
Senator Clinton introduced the Lifespan Respite Care Act in 2002, 2003 and again in 2005. Although the legislation was approved by the Senate in 2003, it failed to pass the House. Senator John Warner (R-VA) became the lead co-sponsor of the legislation in the 108th Congress. Senator Olympia Snowe (R-ME), who has also co-sponsored and championed the bill, helped secure final Senate passage. The bill has been endorsed by over 180 national and regional organizations.
Senator Clinton said:
I am very proud that we are finally able to reach agreement on the Lifespan Respite Care Act and send it to the President for his signature. This has been a bipartisan effort from the very beginning. I’m grateful to Senator Warner who has made a real difference in his leadership on behalf of this bill. I’m grateful to Senator Snowe who was the first lead Republican on this legislation, who has been a champion. And I want to express my appreciation to Representatives Mike Ferguson, as the primary sponsor of the House bill, as well as Congressman Jim Langevin. We would not be here on the verge of enacting this bill without their work. And deep appreciation is due to the Lifespan Respite Taskforce, a coalition of 180 national, state and local organizations, under the leadership and direction of the National Respite Coalition. A special thanks to Jill Kagan of the National Respite Coalition for her leadership and invaluable assistance.
As Senator Enzi said, this bill represents a tremendous acknowledgement of the families who are caring for their loved ones- for ailing seniors, for children with disabilities, for a spouse who’s been incapacitated by accident or chronic condition. Family members provide most of the support and the time consuming physical labor and the emotionally exhausting input that really makes it possible to keep people at home. Each year, 44 million Americans care for an adult family member who has a chronic illness or disability. Almost four million Americans with developmental disabilities, of all ages, live at home with their families. And Senator Coburn and I were talking earlier today; this is such a human issue that affects the lives and the fortunes and the feelings of so many of our fellow Americans.
What this legislation does is to expand and enhance access to respite care services. What are those? Those are to give that wife who is caring for her ailing husband a few hours off a week. Those are for that father who devotes himself to his child with disability to have someplace to go to get a little bit of respite while his child is still well cared for. Family caregivers provide 80 percent of all long term care in the United States.
But as Senator Coburn and I were discussing, you don’t get real financial help unless you put your loved one in a nursing home. There is something wrong with that. That doesn’t reflect our deepest values. And the work that our loved ones do for all of us is unpaid, but valued at more than $300 billion a year. That’s more than the entire amount of money we spent on Medicare in 2004.
So today, our Congress is sending a message to family caregivers. We recognize, we honor your commitment and in many instances, your sacrifice.
We know that because of this care, many caregivers can’t keep their jobs.
It becomes too much of a burden. They struggle to stay afloat. They start selling off assets. This is a labor of love that often undermines the health of the very people who are providing it. We found that many caregivers suffer physical symptoms, sleeplessness, depression, they feel like they’re all alone. And this incredible struggle is one that we will see more and more of in our country because of our aging population. So I’m grateful that we’re going to be passing this legislation and giving some assistance to these courageous men and women, these parents, these children, these grandparents, these spouses.
We also in the new Congress- something else I have talked to Senator Coburn
about- we can address this issue of caregiving, particularly how to rearrange the incentives within our healthcare system, particularly through Medicaid where 80 percent of the money is spent on 20 percent of the recipients and that’s mostly for long-term nursing care at the end of life.
Many people would rather be home or rather be in a less restrictive setting. And if this is a statement of our concern, we need to follow that up.
This will provide what has been missing: improved coordination at the local level of services, helping families understands more about how to shoulder these burdens. It is critical that HHS ensures that we serve all age groups, all disability categories without preference and that we begin to not just honor the love that we see and the sacrifice that is too often accompanying it, but really provide some support.
So I am deeply appreciative of all who have worked over the last years to make this legislation possible and I look forward to working with my colleagues on both sides of the aisle to continue to address these long-term needs- how to help people stay at home, how to support families who are doing the most important work there is.