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11/10: Lifespan Respite–A Lifeline for Family Caregivers

November 10, 2015

Respite, as promoted by the Caregiver Action Network (CAN), is the theme for National Family Caregivers Month—and rightly so! At least 85 percent of the nation’s 43 million caregivers do not use respite. The challenges and barriers to respite are many–cost, limited options, too few well trained providers, not knowing where to go to ask for help, reluctance, and guilt. We know that respite is most beneficial when “respite time” is meaningful for the caregiver. Yet, typically respite may only provide enough time to deal with caregiving tasks or crises, rather than time to relax, unwind, visit with other family members and friends, and engage in activities that were enjoyed before becoming a caregiver.

We can help family caregivers overcome the obstacles and make the best use of their respite time by being their champions, helping them plan for, find and access respite services, inviting their family member with a disability to an activity in the community, or offering to sit with their loved one so that they can take a break.

The ARCH National Respite Network can help, too. We have many resources, including links to a state’s federally or state funded Lifespan Respite program or State Respite Coalition. These entities are meant to make it easier for family caregivers to find respite information, planned and emergency respite services and providers, and funding to help them pay for respite. Since 2009, the Administration for Community Living has awarded Lifespan Respite grants to 33 states and DC to build coordinated systems of community-based respite services for all family caregivers, regardless of the age or condition of the person in their care.

Many of the state Lifespan Respite programs and their coalition partners are offering vouchers to help family caregivers pay for respite, supporting innovative volunteer respite services, and building a network of creative community-based respite options through mini-grants. To expand natural supports around families, Lifespan Respite Programs are working with the faith community and others to provide respite cooperatives, peer-to-peer mentoring programs or other supports. Many are training respite providers to increase the pool of available qualified providers and have established respite registries to make it easier for families to find services. For the majority of family caregivers who are employed, Lifespan Respite programs are offering their respite expertise to engage local employers to support working caregivers. To ensure sustainability, some Lifespan Respite programs are embedding activities into their state’s No Wrong Door systems that help the aging and individuals with disabilities access long-term services and supports. They are partnering with the state’s Money Follows the Person programs that assist individuals with disabilities who are transitioning from facilities back to the community, or sitting at the table with managed care organizations to make sure respite is a covered benefit. Some state respite coalitions have even been successful in securing new or enhanced line-items in their state budgets for respite.

Unfortunately, federal and state funds are too limited to allow for a State Lifespan Respite program in every state, but ARCH has other resources to help family caregivers—a consumer guide to respite and a National Respite Locator Service. On another ARCH map of state resources you can find links to possible funding sources and to resources from our national partners, like Services by State at Family Caregiver Alliance or the Eldercare Locator.  

ARCH just released recommendations from an expert panel of researchers, advocates, and funders to improve and expand research to document the effectiveness of respite. We have pledged to implement the recommendations of the Expert Panel so that funders and policy makers will have the evidence base they need to support quality respite in the future.

I am especially excited that in celebration of National Family Caregivers Month, and to honor the nation’s family caregivers, Rep. Jim Langevin (D-RI) and Rep. Gregg Harper (R-MS) have introduced the bipartisan Lifespan Respite Reauthorization Act of 2015 (HR 3913). If we can pass the legislation and secure the funding amounts that are authorized, we can begin to build state respite systems where there are none and help ensure sustainability for the efforts that are currently underway. Passage of the Lifespan Respite Care Reauthorization Act is an achievable goal that can go a long way to making respite a reality for many more family caregivers.

Family caregiving issues increasingly have bipartisan support on paper, in national public awareness campaigns, in Congressional Caucuses and in state houses. Family caregiving is slowly gaining support in state party political platforms for the 2016 elections through the Family Caregiver Platform Project. We now need to move this “support” and the accompanying rhetoric to “action.” I think the time is right.

— Jill Kagan, MPH, Director, ARCH National Respite Network and Resource Center

ARCH houses the Lifespan Respite Technical Assistance Center funded by the Administration for Community Living and the National Respite Coalition, the policy division of ARCH.





View all 30 Days of Caregiving blogs (to date) at caregiver.org/blog.