U.S. Senate Votes to Expand Funding for Caregiver Respite Programs

On Monday, the U.S. Senate unanimously voted in favor of the Lifespan Respite Care Reauthorization Act of 2019 (S.995), which includes an increase in funding for respite care programs across the country.

• The Mighty’s Caregiving Toolkit

Respite care programs offer short-term planned or emergency services to provide caregivers of people with disabilities or complex medical conditions with a break — or respite — to make time for self-care. Currently, respite care programs in 37 states and Washington, D.C., have received grants thanks to a 2006 law. The Lifespan Respite Care Reauthorization Act of 2019 expands funding for respite programs from $2.5 million each year to $10 million annually for the next 10 years.

The Senate just passed the Lifespan Respite Care Act: grants to states to improve systems of respite care. Please tweet your Senator to say thank you before the bill goes back to the House for final passage: https://t.co/gkfR0Kz5y4

— The Arc of the United States (@TheArcUS) February 26, 2020

By reauthorizing funding, the new bill will allow state programs to provide low- or no-cost respite services to qualifying families. Respite breaks for caregivers may range from a couple of hours of temporary support to up to three months of in-home, assisted living or adult day care center services. Though most states offer respite care programs, many people aren’t aware they exist. According to Sen. Susan Collins (R-Maine), who sponsored the bill, about 85% of caregivers have never received respite services.

“In my conversations with family caregivers, I have found what they need most is respite care, a break from the 24/7 job of caregiving,” Collins said in a statement, adding:

Respite care is essential to caregivers as it helps to reduce mental stress and physical health issues they may experience. With Senate passage of our bill, we are one step closer to giving family caregivers and their loved ones the support they need by ensuring that quality respite is available and accessible.

The Senate unanimously passed a bill I authored with @SenatorBaldwin to authorize $10 million annually for programs to help caregivers take these much-needed breaks. https://t.co/1YxaONMcGa

— Sen. Susan Collins (@SenatorCollins) February 25, 2020

While families may feel hesitant about engaging short-term care, taking brief breaks as a caregiver to practice self-care benefits everyone. Mighty contributor Sue Rutan Donald, whose youngest daughter lives with Aicardi syndrome, explained that respite care gives parents a chance to reconnect with their spouse, plan special one-on-one activities with your other kids, spend time pursuing your own hobbies and supporting your disabled child’s independence.

“In the beginning, it can be difficult to imagine giving your child’s care over to someone else for any period of time for any reason,” Rutan Donald wrote, adding:

Using respite services can be a part of giving good care to them. By giving you a break, respite can help you find perspective about your situation and see the good things, rather than focusing on the practical ones. Caring for yourself and other family members can reduce everyone’s stress level and make it easier to deal with the frustrations and challenges that are part of family life with a child who needs extra care.

2/2 Caregivers are the lifeline for people living with #ALS and must be recognized and supported. #Respite is a critical lifeline to those caregivers and provides them with the opportunity to recharge.

— The ALS Association (@alsassociation) February 25, 2020

Now that the Lifespan Respite Care Reauthorization Act of 2019 passed in the Senate, it will be sent to the House of Representatives, who passed a similar bill last year. Before the bill can be signed into law by President Donald Trump, the Senate and House versions must be reconciled. No timeline for this process has been announced.

To learn more about the Lifespan Respite Programs available in your state and how they can support you and your family, visit the ARCH National Respite Network’s National Respite Locator, where you can find state respite coalitions, programs and services near you.

The Senate passed the Lifespan Respite Reauthorization Act on Feb. 24. Thank you @SenatorCollins @SenatorBaldwin Senator @PattyMurray for always championing family #caregivers and meeting their needs for #respite. https://t.co/8PA2ymSP6h

— Respite for Families (@ARCHRespite) February 25, 2020