Part of the Transforming Life as We Age Special Report
“Respite care” can be a little difficult to understand. The words don’t make it clear who is being helped. The “care” goes to the person who needs it due to illness or disability. The “respite” — a chance to rest and recharge — goes to the family member or other volunteer who would normally be on the spot, doing the caring. As for who gets helped by this? Everybody does.
“If family caregivers don’t take the time needed to care for themselves, we will face an additional health care crisis,” says Lily Sarafan, CEO of California-based Home Care Assistance, which provides support services including respite care. “Caregiver burnout can be associated with serious health issues including depression, and yet burnout is still not recognized as a real health issue in the eyes of many caregivers. Families and communities need to develop sustainable care plans that do not just rely on a single individual.”
Even when caregivers do recognize their need for respite, they might not seek it. For many, it’s hard to carve out the time or money to arrange respite care.
One place that tries to make the process easier for caregivers is the nonprofit ARCH National Respite Network and Resource Center. ARCH is a searchable online state-by-state guide to respite service providers and sources of funding to help pay for care.
“Don’t wait until a crisis to use respite,” says Jill Kagan, ARCH’s program director. “If you wait until you are overwhelmed, it is less effective than if you plan consistent respite breaks.”
Here are eight more places that can help families get respite care:
Government-Funded Programs for Respite Care
Eldercare.gov / Your Local Area Agency on Aging — Eldercare.gov is run by the U.S. Department of Health and Human Services’ Administration on Aging. It has a searchable locator feature for finding aging and caregiving resources, and it will lead you to one of the best one-stop-shops for help in your region, your local Area Agency on Aging (AAA). AAAs are knowledgeable about all federal, state and local programs that might apply to your situation, including respite services and any financial aid that might be available to you. There are, for example, waiver and voucher programs that provide free respite care covered by Medicaid for those who meet program requirements. Kagan cautions that the waiting list for these programs is long, however. AAAs also administer federal dollars from initiatives such as the National Family Caregiver Support Program. Federal money that AAAs distribute to service providers in your community helps subsidize those services and lowers out-of-pocket costs for families.
U.S. Department of Veterans Affairs — If you are caring for a veteran, look into the respite care provisions of the Veterans Administration (VA) Standard Medical Benefits Package, which allows for 30 days of free respite care per year for qualifying veterans and caregivers. The respite can be provided in the home, through an adult day care center or through VA nursing homes called Community Living Centers.
Legacy Corps — This program for military families and caregivers is part of AmeriCorps, run by the federal Corporation for National and Community Service. Legacy Corps volunteers, many of them military veterans and caregivers themselves, provide companionship in the home to care recipients — up to 10 hours a week, in some cases — allowing the family caregiver to take a break. Caregivers must apply and be accepted. Get more information on Legacy Corps through the VA Benefits Administration office in your area or through your region’s Aging and Disability Resource Center (ADRC). Most ADRCs are part of an Area Agency on Aging. If your ADRC is a separate entity, your AAA will be able to help you connect with it.
Nonprofit Grant Providers for Respite Care
Some organizations offer support specific to the illness or disability a family is dealing with, including these two programs for Alzheimer’s respite care:
Hilarity for Charity — This nonprofit, started by actor-comedian Seth Rogen and his wife Lauren Miller Rogen, has provided grants for 191,000 hours of respite care for families living with Alzheimer’s disease. Care is provided by Hilarity for Charity’s partner in this project, the Home Instead Senior Care Network. Caregivers can apply at Hilarity for Charity.
Alzheimer’s Foundation of America—The foundation provides annual grants to its nonprofit member organizations for respite care in local communities. Find out which organizations provide grants to caregivers at the Alzheimer’s Foundation of America website.
Additional Respite Care Tips for Further Exploration
Try reaching out to other disease-related organizations (e.g., the Alzheimer’s Association, American Cancer Society, Easter Seals) to ask about grants or programs that give free or reduced-cost respite care. Check also with adult day care centers and faith-based organizations. Many have ways to provide or support respite care. Again, your Area Agency on Aging might know about these resources and be able to help you connect with them.
Programs also exist outside of the usual caregiving settings. The Family Caregiver Alliance based in San Francisco offers Bay Area residents a Camp for Caring. In this successful 20-year-old program, care recipients are cared for in a “camp” setting with health care professionals while family caregivers can stay at home and take a break.
Employers, Friends, Family
Your Workplace — A 2016 report from the Society for Human Resource Management showed both good and bad trends for working caregivers. On the positive side, 75 percent of employers with 50 or more employees provide full (unpaid) family and medical leave coverage under the Family and Medical Leave Act (FMLA), up to 12 weeks of leave. Some states, such as California, have paid leave under the FMLA. The report also found that the number of employers offering access to respite care has doubled since 2005. Still, only six percent of all employers include this respite care benefit in their employee assistance programs. Check with your employer to learn which benefits are available to you as a caregiver.
Online Hubs for Care Coordination — Several online communities have been created to ease the task that falls to caregivers when friends and family want to help out — specifically helping with coordination. Most of these sites offer an online calendar where the caregiver can list tasks for which he or she would like help: grocery shopping, picking kids up from school, sitting with the care recipient so the caregiver can take a jog or a yoga class. Using these sites requires being willing to ask for help and inviting your friends and family into your private online community so they can see what you need and volunteer to do it. Two of the largest of these sites are Lotsa Helping Hands, which supports more than 100,000 caregiver online communities, and CaringBridge.
Caregiver Co-ops — These co-ops let caregivers bank “social capital” in the form of volunteer hours. Individual co-ops decide how their banking system will work, but in general the principle is that a caregiver who gives volunteer hours to help another caregiver can ask for equivalent hours of help from co-op members later on. Ask around at caregiver support groups to see if there’s a caregiver co-op in your community. Or consider starting a co-op with other caregivers you know.
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