A study published in the journal Pediatrics examines the costs of family caregiving for children with special health care needs (CSHCN). There are about 5.6 million CSHCN in the U.S. who receive a total of 1.5 billion hours of uncompensated family care. Replacement with home health would cost approximately $35.7 billion, an average of $6,400 per child. The cost in forgone earnings for caregivers was about $17.6 billion or $3,200 per child.
The ARCH National Respite Network and Resource Center is sponsoring a webinar, TimeBanking for Respite: An Innovative and Socially Just Approach to Supporting Family Caregivers on Wednesday, May 25, 2016 from 3:00 pm – 4:30 pm, EDT. This webinar will describe the history and philosophy of TimeBanking and describe how TimeBanks can be applied to the offering of respite care to family caregivers. Timebanking is based on the idea is that those receiving help can “pay” for the services they receive from others, not with money but time credits which they have earned by helping others. Edgar Cahn, CEO of TimeBanks USA, will provide an overview of the content, philosophy and functions of TimeBanks. Chris Gray, TimeBanks Special Projects Coordinator, will provide more details on how these principles can be applied to delivery of respite services. Register here.
The Administration for Community Living (ACL) has announced funds for new grants for Lifespan Respite systems. The grants will include a federal funding level of up to $200,000 per award for a 36 month project period and will fund up to three cooperative agreements. Grant funds are for planning, establishing, and expanding/enhancing Lifespan Respite Care systems in the states, including new and planned emergency respite services, training and recruiting respite workers and volunteers, and assisting caregivers with gaining access to needed services. While the eligible applicants are state governments, all applicants must demonstrate the support and active involvement of a range of government and non-government, private, non-profit and other organizations with a stake in serving populations eligible to receive services under the Lifespan Respite Care Act. Only one application per State will be funded. Once funded, grantees will be expected to collaborate with multiple state and local agencies representing all ages, populations and disability/disease groups in planning and carrying out the requirements of the project. The announcement can be found here.
The Older Americans Act Reauthorization Act of 2016 was signed into law by President Obama on April 19. Among its many provisions, Public Law 114-144 includes a fix to the National Family Caregiver Support Program (NFCSP) The NFCSP, which received $150 million in FY 2016, provides information to caregivers about available services, assistance in accessing services, individual counseling, support groups, caregiver training, respite care, and supplemental services. The new law extends eligibility to older relative caregivers (age 55 and over) of adults with disabilities (age 19 to 59).
Reps. Tom Reed (R-NY) and Loretta Sanchez (D-CA) have introduced the Credit for Caring Act of 2016 (H.R. 4708). The bill supports family caregivers by offering a federal tax credit of up to $3,000 for those who qualify. The tax credit would provide eligible family caregivers caring for loved ones of all ages with some financial relief and help them pay for services such as home care, adult day care, respite care, and other supports. The Arc supports this legislation that will help to ensure the financial security of family caregivers of persons with disabilities.
On March 21, the House unanimously passed the Older Americans Act Reauthorization Act of 2016 (S. 192) under suspension of the rules. The Senate followed suit by passing the bill by unanimous consent on April 7. Among its many provisions, the bill includes a fix to the National Family Caregiver Support Program (NFCSP). The NFCSP, which received $150 million in FY 2016, provides information to caregivers about available services, assistance in accessing services, individual counseling, support groups, caregiver training, respite care, and supplemental services. While NFCSP services are available to a wide range of caregivers, currently the NFCSP does not assist older parents who are caregivers of adult children with disabilities. S. 192 fixes this gap by extending NFCSP eligibility to older parents (age 55 and over) of adults with disabilities (age 19 to 59). President Obama is expected to sign the measure shortly.
On March 21, the House passed the OAA reauthorization (S. 192 under suspension of the rules. The bill, sponsored by Health, Education, Labor and Pensions (HELP) Committee Chairman Lamar Alexander (R-TN), Ranking Member Patty Murray (D-WA), and Senator Richard Burr (R-NC), and Senator Bernie Sanders (I-VT), among many other things, includes a fix to the National Family Caregiver Support Program (NFCSP). The NFCSP, which received $150 million in FY 2016, provides information to caregivers about available services, assistance in accessing services, individual counseling, support groups, caregiver training, respite care, and supplemental services. S. 192 would extend NFCSP eligibility to older (age 55 and over) caregivers of persons (age 19 to 59) with disabilities. The measure now returns to the Senate for a vote as a number of changes were made to the bill since the Senate passed it last summer.
The Senate Health, Education, Labor, and Pensions (HELP) Committeeunanimously passed the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (S. 1719) on November 18. The Arc supports this bipartisan legislation to implement the bipartisan recommendation of the federal Commission on Long-Term Care which requires the development of a national strategy to support family caregivers. The bill would create an advisory body to bring together relevant federal agencies and others from the private and public sectors to advise and make recommendations. The advisory body would identify specific actions that government, communities, providers, employers, and others can take to recognize and support family caregivers. Advocates are encouraged to thank their Senators who serve on this committee.
Rep. Jim Langevin (D-RI) and Rep. Gregg Harper (R-MS), co-chairs of the House Bipartisan Disability Caucus, introduced the Lifespan Respite Reauthorization Act (H.R. 3913) on November 3. The bill would reauthorize the Lifespan Respite program through 2020 at an authorization level of $15 million per year (an amount well above its present $2.3 million annual appropriation). This program implements statewide systems of coordinated, community-based respite for family caregivers caring for individuals regardless of age or type of disability. Read a summary of the bill here.
The Department of Labor has clarified when siblings may be eligible to take job-protected leave under the Family and Medical Leave Act (FMLA). For the first time, the Department has included siblings among those eligible for FMLA job-protected leave under certain circumstances. The Arc joined other disability advocates last year in advocating for the eligibility clarification. The Arc is pleased with this change in interpretation of the law, but will continue to seek a full legislative fix to ensure that siblings are covered under FMLA. See the updated guidance documents: