July XX, 2011
Dear Chairman Harkin and Ranking Member Shelby:
We, the undersigned state and local organizations, coalitions, services, and programs representing all ages and disabilities are writing to urge necessary funding in the FY 2012 Labor/HHS/Education Appropriations bill for respite and other critical support programs that provide the safety net for family caregivers across the lifespan. First, we are requesting $50 million for the Lifespan Respite Care Program. Given the serious fiscal constraints facing the nation, this request has been reduced by one-half below the previous fiscal year’s authorized and requested amount, yet sufficient to begin to address family caregiver needs equitably across the lifespan. We are also seeking support for the National Family Caregiver Support Program ($192 million); the Native American Caregiver Support Program ($8 million); he Caregivers and Veterans Omnibus Health Care Program, and the Title II Family Support Program of the Developmental Disabilities Act.
This request is in line with President Obama’s Caregiver Initiative, included in the Administration’s FY 12 Budget Proposal, to expand help to families and seniors so that caregivers can better manage their multiple responsibilities. Prominent components of the President’s initiative include increased funding for the National Family Caregiver Support Program (NFCSP) by $38 million to the total of $192 million and the Lifespan Respite Program by $7.5 million to a total of $10 million. We commend the Administration for elevating the needs of the nation’s family caregivers as an immediate budget priority for FY 2012. However, the President’s recommendations still focus on caregiving of the aging population. While this is a growing issue and must be addressed immediately for the health and well being of the nation’s families, it is critical to note that a majority (56%) of the individuals being cared for by the nation’s family caregivers are under age 75 and 28% are under age 50. Family caregiving is not just an aging issue, but also a lifespan issue for the majority of the nation’s families.
Currently, the Lifespan Respite Care program is significantly underfunded at $2.5 million. Close to 90% of the nation’s 65 million family caregivers do not receive any respite, including 81% of family caregivers providing care to someone under age 18 (National Alliance for Caregiving and AARP, 2009). By adequately funding Lifespan Respite, states will be able to implement comprehensive and coordinated systems of respite for family caregivers across age and disability categories, with the goal of saving billions of dollars in more costly institutional care, as well as state administrative costs. More than at any other time, when Medicaid is severely threatened, any effort that can help reduce Medicaid expenditures for long-term services and supports and preserve the program’s integrity, should be on the front burner.
These Lifespan Respite systems, which maximize existing resources, require that respite become more accessible and available to all family caregivers. As importantly, Lifespan Respite systems help build respite capacity and improve quality by requiring states to focus on respite provider/volunteer training and recruitment, funding of start-up of all models of respite delivery, and affordability issues for the family caregivers who currently are not eligible for any existing federal or state programs that support respite. Without expansion of Lifespan Respite systems, individuals with ALS, MS, spinal cord injuries, traumatic brain injuries, and mental health conditions, as well as, parents of adults with developmental disabilities, and children with emotional or physical disabilities will still be left out in the cold. A new study from The Arc, found that significantly more than 75% of family caregivers caring for adult children with developmental disabilities could not find respite services.
