Mr. Speaker, I rise today in support of H.R. 3248, the Lifespan Respite Care Act. This important bipartisan legislation will for the first time establish a national policy to help our Nation's 50 million family caregivers, including…
Mr. Speaker, I rise today in support of H.R. 3248, the Lifespan Respite Care Act. This important bipartisan legislation will for the first time establish a national policy to help our Nation's 50 million family caregivers, including 900,000 New Jersey family caregivers who provide daily care for their loved ones with disabilities and chronic conditions or illnesses.
Instead of an institutionalized setting, in-home family caregivers provide minute-by-minute special assistance to a loved one with a disability or a critical illness or a chronic condition. Mr. Speaker, family caregivers are remarkable people. They make extraordinary sacrifices to help those whom they love so dearly. I saw one such example firsthand almost 10 years ago when my mom was diagnosed with multiple myeloma. For 6 years, my dad cared for her as she battled cancer.
She lived longer than any of her doctors thought she would, and since she went to heaven 3\1/2\ years ago, our family has looked back on those extra monuments we had with our mom, and we treasured them, knowing that it was my dad's love and care which helped to make them possible.
There are tens of millions of family caregivers in this country who provide the same loving and compassionate care that we saw my dad provide for my mom near the end of her life. In our family we were fortunate to have a support structure of relatives and friends who were able to provide a break for my dad when he really needed one. That respite was crucial for him. For him to stay healthy himself, it enabled him to provide better care for my mom.
But there are countless caregivers around this country who are not blessed with that built-in support structure, and they are desperately in need of a break from time to time. Because while the benefits of in- home care can be significant for the family, compared with institutionalized care, the cost for the family caregiver, from emotional to financial, can be enormous.
All across the country there are people like Karen Pinter of Hillsborough, New Jersey, providing in-home care. Karen provides round the clock care for her 10-year-old autistic daughter, Jessica. For Mrs. Pinter, respite means receiving $40 once a week from the New Jersey Family Support Center so that she can hire a tutor for her daughter.
With a tutor, Karen Pinter can take a much-needed break so she can do simple things for herself and for her family that many of us take for granted, like writing out that week's grocery list or preparing dinner or paying bills or simply taking a break for herself.
Respite for Eugenia and Roger Gore of Scotch Plains, New Jersey, helps their family to make ends meet. Their family uses respite hours so their 13-year-old autistic son can attend an extended-day program at school so Mrs. Gore can work outside the home to help further support their family.
Now the Gore family uses their respite funds to enable Mrs. Gore to work outside the home. This helps alleviate a financial burden, but it does not allow their family the break that respite oftentimes would. Even as they applied to the State of New Jersey for support for some respite hours on a weekend so they could get that much-needed break for grocery shopping or to attend one of their other son's athletic games, unfortunately they were denied.
For caregivers providing intense and exhausting care 24 hours a day, 7 days a week, 365 days a year, the occasional short break can literally be a lifesaver. That is what respite care is. It is providing a break for caregivers.
Mrs. Pinter has told me that caring for a special needs child can be very joyful. It can also be very challenging, and she is right. Family caregivers suffer poor health and even higher mortality rates than non- family caregivers, according to some recent studies. For example, mortality rates among older caregivers are 63 percent higher than among older non-caregivers. Two-thirds of family caregivers report physical or mental health problems that are linked to their care giving.
Nationally, there is no coordinated approach that exists among different levels of government or advocacy groups to help those who need respite care to find it and to qualify for it and to pay for it.
The problem is that respite care is in short supply or it doesn't exist at all in some areas. This legislation that we are considering today would change that. The Lifespan Respite Care Act would improve coordination and access for respite care and recruit and train respite care providers. With $289 million over the next 5 years, the bill would also aid family caregivers in finding and paying for respite services through competitive grants to States to make quality respite care available and accessible, regardless of age or disability or family situation.
National and grassroots advocacy groups, including the AARP, Alzheimer's Association, Epilepsy Foundation, National Multiple Sclerosis Society, Paralyzed Veterans of America, The Arc of the United States, and United Cerebral Palsy, they all support this legislation.
Why does this legislative effort have such strong support from such reputable organizations and many others? Because we know respite care works. Respite care improves the health and well-being of caregivers and reduces the risk of abuse or neglect. Importantly, it also delays or even avoids more costly hospitalizations or placements in nursing homes or foster care.
Mr. Speaker, for over 2 years I have been working tirelessly with many of our colleagues on the Energy and Commerce Committee on both sides of the aisle to bring this bill to the floor. I want to thank Chairman Barton for his support and the ranking member of our committee, Mr. Dingell. I want to offer a special word of thanks to Chairman Nathan Deal for his support of this bill. I know his heart is very close to this effort. I want to thank the ranking member, Mr. Pallone, as well for his strong support of this legislation.
I also want to thank the over 180 national and State and local organizations who, under the direction of the National Respite Coalition and its chair, Jill Kagan, who is here in our Chamber today with us, we have worked tirelessly on behalf of the Nation's family caregivers on this issue. I want to thank Tom Fussaro from our staff in our office, and Eric Joyce from the Family Resource Network and the Epilepsy Foundation of New Jersey. And I particularly want to thank Mr. Langevin, the gentleman from Rhode
Island, who has been such a strong supporter and my partner in this legislation all along the way.
Finally, I want to thank my dad, who has provided our family and many others with a remarkable example of the loving care that a family caregiver can provide.
Providing relief to our Nation's family caregivers is long overdue, and I urge my colleagues to support this legislation. Today's action by this House will represent not only an important victory for family caregivers nationwide but also sends America's caregivers a very clear message: Your selfless sacrifice is appreciated, and help is on the way.
Mr. Speaker, today I rise in support of H.R. 3248, the Lifespan Respite Care Act. For over 2 years I have been working diligently with many of my colleagues on the Energy and Commerce Committee to bring this bill to the floor. Over 180 national, State and local organizations under the direction of the National Respite Coalition have worked tirelessly on behalf of the Nation's family caregivers to help us get to this point. This legislation will for the first time establish respite as a policy priority for the Nation's estimated 50 million family caregivers, who daily provide care for their loved ones with disabling or chronic conditions or illnesses.
Most caregivers freely and willingly provide this care out of love and commitment, but often at great cost to themselves physically, emotionally, and financially. One in five caregivers report that they are in fair or poor health; 43 percent report having a chronic health condition that requires ongoing medical care, putting themselves at great risk and jeopardizing their ability to provide continued care to their dependent loved ones. An estimated 46 percent to 59 percent of family caregivers are clinically depressed. A recent medical study found that older caregivers who were providing care for an elderly individual with a disability and experiencing caregiver strain had mortality rates that were 63 percent higher than non-caregiving controls.
Caregivers are stretched thin in others ways as well, often with lost income and multiple family responsibilities. Nearly half of caregivers--48 percent--providing care to child, adult or elderly family members who have chronic or disabling conditions, have other children under age 18. Forty-two percent have family incomes below 200 percent of poverty compared to 34 percent of women without family caregiving responsibilities. While most caregivers are employed, many are forced to make extreme financial sacrifices in order to continue to provide care. In an Iowa survey of parents of children with disabilities, a significant relationship was demonstrated between the severity of a child's disability and their parents missing more work hours than other employees. They also found that the lack of available respite care interfered with parents accepting job opportunities. Over the course of a caregiving ``career,'' family caregivers providing intense personal care can lose as much as $659,000 in wages, pensions and Social Security.
The cost to U.S. businesses is even more staggering. A new study by Metropolitan Life Insurance Company and the National Alliance for Caregivers found that U.S. businesses lose from $17.1 billion to $33.6 billion per year in lost productivity of family caregivers. Offering respite to working family caregivers could help improve job performance and employers could potentially save billions.
Still, many barriers exist to accessing respite--including a reluctance to ask for help, fragmented and narrowly targeted services, cost, and the lack of information about how to find or choose a provider. Even when respite is an allowable funded service and resources are available to pay, a critically short supply of well- trained respite providers may prohibit a family from making use of a service they so desperately need.
Restrictive eligibility criteria also preclude many families from receiving services or continuing to receive services they once were eligible for. A New Jersey mother of a 12 year old with autism was denied additional respite because she was not a single mother, was not at poverty level, and was not exhibiting any emotional or physical conditions herself. As she told us, ``Do I have to endure a failed marriage or serious health consequences for myself or my family before I can qualify for respite? Respite is supposed to be a preventive service.''
Respite, the most frequently requested service among family caregivers, offers a temporary break from the rigors of continuous care and helps sustain their own health and well-being. Others are able to tend to an emergency situation or personal health crisis. For a caregiver providing intense and exhausting care 24 hours a day, 7 days a week, 365 days a year, an occasional short break can literally be a life saver.
Respite reduces stress, enhances caregiver health and well-being, and ensures the safety and health of the loved ones in our care. Studies have shown that respite care for family caregivers has resulted in fewer hospitalizations for the children and elderly family members in care. Respite has also been shown to help reduce the likelihood of abuse and neglect and foster care placements. Research conducted by the ARCH National Respite Resource Center has also shown that respite can help keep marriages intact and enhance family stability. Another study found that if respite care delays institutionalization of a person with Alzheimer's disease by as little as a month, $1.12 billion is saved annually.
The bill authorizes $289 million over 5 years for competitive grants to States through Aging and Disability Resource Centers working in collaboration with State respite coalitions or other State organizations. These organizations provide or have expertise in respite to make
respite available and accessible to family caregivers, regardless of age or disability, through coordinated lifespan respite systems. This legislation would help States maximize the use of existing resources and leverage new dollars by building on current services and systems that States already have in place. The bill would help support planned and emergency respite, respite workers and volunteer training and recruitment, caregiver training, and program evaluation.
The congressional intent of the legislation is to ensure that respite becomes more accessible to all family caregivers in need, especially to those who currently do not qualify for any respite programs, who have no respite programs or providers in their areas, and those who do not know where to turn to find information on how to find and pay for respite. By using the broad term child or adult with special needs, Congress intended for the State to be highly inclusive and ensure that family caregivers of children and adults with developmental disabilities, cognitive, neurological, physical and mental health conditions and illnesses be equitably served. The focus for direct service delivery should be on those who currently may not qualify for respite under any State or Federal program or who have no service available, such as individuals under age 60 with multiple sclerosis, cancer, ALS, traumatic brain injury, and spinal cord injury, or children, adolescents or adults with behavioral, emotional or mental health conditions.
Just as importantly, Congress intended that States focus immediately on establishing coordinated lifespan respite systems that will serve all age groups equally. The Secretary should ensure that State agencies and ADRCs use the funds provided by this act to serve all age groups and disability categories equally and without preference. The Aging and Disability Resource Centers were established by the administration with the intention of being one-stop shops for all individuals with long- term care needs, making them logically a good place to administer lifespan respite systems, which are meant to be one-stop shops for respite services. However, many centers are still focusing on the elderly population or adults with physical disabilities and phasing in others at a later date. For the lifespan respite care effort to work most efficiently to coordinate all respite resources in the State, share and pool providers across age and disability groups, and to maximize use of current State respite resources, the ADRCs, in implementing this particular program, must start out with the goal of establishing coordinated respite systems of community-based agencies that will serve all age groups, including children.
Congress also intended lifespan respite to be coordinated at the State level. Many of the ADRCs in the States are serving only one county or region in the State. However, this legislation mandates the establishment of state lifespan respite programs, meaning that at least one ADRC in the State must function statewide, at least for the purposes of this legislation, with the assistance of a State respite coalition or other State respite agency to ensure coordination of resources at the State level, again for maximum efficiency and cost savings.
Legislative language is also clear in mandating a Federal coordinated approach. It directs the Secretary of Health and Human Services in implanting the program to have all agencies in HHS with respite programs or resources work collaboratively at every level, from developing program guidance and awarding grants and cooperative agreements, to monitoring and evaluation. Congress intends the following agencies to work together: the Administration on Aging, the Administration on Developmental Disabilities, the Substance Abuse and Mental Health Services Administration, the Administration on Children and Families, including the Office on Child Abuse and Neglect, Centers for Disease Control's Family Caregiving Initiative, the Maternal and Child Health Bureau, and other appropriate public health agencies in the Health Resources and Services Administration.
When considering a Federal agency to take the lead in implementation of this program, the Secretary of HHS should select an agency that is not limited in scope or mission by any age or disability category, has experience in serving all populations across disability and age groups, and will ensure that the ADRC is collaborating fully and sharing joint responsibility with a private or public nonprofit State respite coalition or organization in implementing a state lifespan respite program.
Mr. Speaker, I urge my colleagues to support this legislation. With 80 percent of long-term care provided by family caregivers, too many are shouldering the responsibility alone. At a minimum, they need respite to continue serving their loved ones at home where they belong.