Caregiving Update: US President Signs Lifespan Respite Bill

 

FOR IMMEDIATE RELEASE
December 21, 2007

Contact:  Jill Kagan, Chair

                                                                                                                                                                                                      National Respite Coalition

                       703-256-9578
jbkagan@verizon.net
 

PRESIDENT SIGNS CRITICAL RESPITE BILL FOR FAMILY CAREGIVERS
Lifespan Respite Care Act of 2006 (HR 3248)
           Washington, DC (December 21, 2006) -  The Lifespan  Respite Task Force, a coalition of over 170 national, state, and local organizations, applauds the signing of  The Lifespan Respite Care Act of 2006 (HR 3248) into law. The bill was introduced and championed in the US House of Representatives by Rep. Mike Ferguson (R-NJ) and James Langevin (D-RI). A companion bill in the Senate was cosponsored by Senator Hillary Clinton (D-NY) and Senator John Warner (R-VA).  The Lifespan Respite Task Force includes a diverse group of national and state organizations: state respite and crisis care coalitions; health and community social services; disability, mental health, education, faith, family caregiving and support groups; groups from the child advocacy and the aging community; and abuse and neglect prevention groups.  

Family caregivers are providing 80% of long-term care in the US, a level of care valued at $306 billion a year, more than what is spent on nursing home and paid home care combined. Even though most families take great joy in providing care to their loved ones so that they can remain at home, the physical, emotional and financial consequences can be overwhelming without some support, such as respite.  Respite provides the much needed temporary break from the often exhausting challenges imposed by constant caregiving.

            The new law would authorize $289 million over five years for state grants to develop Lifespan Respite Programs to help families access quality, affordable respite care. Lifespan respite programs are defined in the Act “as coordinated systems of accessible, community-based respite care services for family caregivers of children and adults with special needs.” Specifically, the law authorizes funds for:

• development of state and local lifespan respite programs;
• planned or emergency respite care services;
• training and recruitment of respite care workers and volunteers; and
• caregiver training.

          When the bill passed the House, Rep. Ferguson, whose own father was a caregiver for his ill mother for 6 years said, “Today’s action by the House of Representatives represents not only an important victory for family caregivers nationwide, but it also sends America’s caregivers a clear message: Your selfless sacrifice is appreciated, and help is on the way.”

           “On behalf of over nation’s family caregivers who desire to keep their loved ones at home despite limited support, we commend Rep. Ferguson, Vice-chair of the Health Subcommittee of the House Energy and Commerce Committee, Rep. Langevin, and  Senator Hillary Clinton (D-NY) and Senator Warner (R-VA) for their leadership, and especially want to thank them, their colleagues from both sides of the aisle, and the White House for taking action to help the burgeoning numbers of family caregivers,” said Jill Kagan, Chair of the National Respite Coalition, and facilitator of the Lifespan Respite Task Force. “Relatively minimal investments in respite help family caregivers provide this care at home and in the community. At a time when federal and state fiscal resources are limited, this is the most compassionate and fiscally responsible thing we can do, and a most welcome gift in this holiday season.”

(See attached statement)

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STATEMENT
 Life Span Respite Task Force, National Respite Coalition
           The Lifespan Respite Task Force, a coalition of over 170 national and state organizations applauds the action taken today by the President to sign the “Lifespan Respite Care Act of 2006,” (HR 3248) into law,  demonstrating the breadth of strong bipartisan support for the measure. The House bill was originally introduced by Rep. Mike Ferguson (R-NJ) and James Langevin (D-RI), along with Representatives Terry (R-NE), Norwood (R-GA), Wilson (R-NM), and Brown (D-OH), and had an additional 79 cosponsors from both parties.  The Senate bill was introduced by Senator Hillary Clinton (D-NY), Senator John Warner (R-VA),  and Senators Mikulski (D-MD), Smith (R-OR), Kennedy (D-MA), Collins (R-ME), Jeffords (I-VT), Bond (R-MO), Murray (D-WA), Cochran (R-MS), Boxer (D-CA), Snowe (R-ME), Kerry (D-MA), Talent (R-MO), Nelson (D-NE), Coleman (R-MN), Durbin (D-IL),  and Hagel (R-NE). The bill would authorize grant funds to states to develop Lifespan Respite Programs to help families access quality, affordable respite care regardless of age or disability.

           Without respite, not only can families suffer economically and emotionally, caregivers themselves may face serious health and social risks as a result of stress associated with continuous caregiving. Three fifths of family caregivers age 19-64 surveyed recently by the Commonwealth Fund reported fair or poor health, one or more chronic conditions, or a disability, compared with only one-third of non caregivers. Out-of-home placement, or something even more heartrending, may seem like the only option. Tragically, a study of elderly spousal caregivers (aged 66-96) found that caregivers who experience caregiving-related stress have a 63% higher mortality rate than noncaregivers of the same age.  

           Respite, often the most frequently requested family support service, provides caregivers with occasional relief necessary to sustain their own health or attend to other family members, as well as quality, meaningful experiences for the care recipient. Many caregivers may also find themselves in crisis situations due to job loss, homelessness, substance abuse or their own ill health.  A temporary haven to insure the safety of the person for whom they provide constant care becomes an absolute necessity.

           Respite has been shown to help sustain family caregiver health and wellbeing, avoid or delay out-of-home placements, and reduce the likelihood of abuse and neglect. According to the ARCH National Respite Network and Resource Center, data from an outcome based evaluation pilot study show that respite may also reduce the likelihood of divorce and help sustain marriages.

           Despite this success, access to quality respite care is difficult, especially for individuals with certain disabilities or chronic illness such as behavioral, mental health or severe medical conditions, or in some rural and urban centers where resources may be scarce.  Shortages of trained providers and quality respite programs, limited family resources to pay for respite care, restrictive program eligibility criteria based on age, income or disability, and fragmented and duplicative systems, keep many families from accessing the respite they need.

           The Lifespan Respite Care Act of 2006 is based on model state lifespan respite programs that have successfully addressed all of these barriers. Three states have enacted legislation to implement Lifespan Respite Programs (OR, NE, WI), which establish state and local infrastructures for developing, providing, coordinating and improving access to respite for all caregivers, regardless of age, disability or family situation. Oklahoma has also implemented a successful Lifespan Respite program.  The Lifespan Respite Care Act of 2006 will help establish respite as a national priority and provide the assistance states and localities need to move forward.

           The Lifespan Respite Task Force, a working group of the National Respite Coalition (NRC), is a broad coalition of national and state organizations which came together to develop and promote a national respite policy.  The NRC is the policy division of the membership organization, the ARCH National Respite Network.