Sources for Respite Care Coverage

Helpful Highlights

• Medicare only covers respite care during hospice.

• There are many federal and state respite care programs that caregivers don't know about.

• Many caregivers forego respite care because it's an administrative challenge (paperwork, timing, approvals, coordination, etc.).

• Consider that informal care (family, friends, neighbors, church members) is free and still gives you relief.

Some plans, programs, and services completely cover the cost of respite care, and those that do not may at least offset some of the cost.

There are many organizations out there interested in helping caregivers with respite among other things, though they do not advertise it, so it takes seeking them out and having conversations with them.

Original Medicare

Medicare only covers respite care for caregivers of hospice beneficiaries, under the Part A hospice benefit. You can apply for up to 5 days of respite care. At this time, your loved one will be temporarily placed in a Medicare-certified inpatient facility, which is often a nursing home, but hospice providers have arrangements with many 24-hour long-term care facilities that can also provide respite care. Some hospices provide their own inpatient hospice units for occasional respite care. Medicare does not cover respite care in the home.

It's important to understand that the respite care portion of the hospice benefit is not available to any caregiver at any time. Qualifications apply and justification for the relief must be documented. In other words, the caregiver must demonstrate a need for respite care. Likewise, respite care depends on an area Medicare-certified facility having the room available to accommodate your loved one.

Initiating a respite care request requires documentation from a medical provider and then contacting Medicare or the area Medicare Administrative Contractor (MAC) for availability and arrangements. *Your loved one's hospice service may be able to help you navigate a respite care request.

Medicare Advantage (MA)

As of 2019, Medicare Advantage (MA) plans (Part C) can include respite care in their plan designs. The difference in the coverage is that respite is not necessarily limited to hospice, as it is with Original Medicare. Some MA plans will include respite care in the form of adult day care, in-home respite care, as well as short-term respite care in an approved facility.

Note that not every MA plan will have these benefits. Additionally, these benefits must be part of an overall care plan recommended by a medical provider. Each plan will allot a certain dollar amount or number of hours of respite care that will be covered each year.

Initiating a respite care request requires documentation from a medical provider and then contacting the MA plan for availability and arrangements.

Medicaid

Respite care is not a standard benefit with Medicaid. It is covered by Medicaid programs such as waivers or state plans.

• PROGRAM OF ALL-INCLUSIVE CARE FOR THE ELDERLY (PACE). PACE is available only in certain states and locations within those states. PACE is a combined Medicare and Medicaid program that provides care and services to people who otherwise would need care in a nursing home. PACE covers medical, social service, and long-term care costs. It may pay for some or all of the long-term care needs of a person with Alzheimer’s disease. PACE enables most people who qualify to continue living at home instead of moving to a long-term care facility. To find out more, contact Medicare at 800-633-4227 or visit Medicare’s PACE page. You can also search for local programs by state or ZIP code using PACEFinder, an online service of the National PACE Association.

• WAIVERS. Generally, every state offers some respite assistance through various home and community-based Medicaid waivers. Click here to find out about waivers available in your state that pay for respite, along with eligibility information.  Each state's eligibility criteria and funding for waivers are different and you should also check with your state’s Medicaid Office.

• STATE PLAN. If you live in AR, CA, CT, DE, DC, ID, IN, IA, MI, MS, NV, OH, or TX* and the person you care for qualifies for Medicaid under income guidelines, respite may be covered under your state's Medicaid plan without the need for a waiver.

*These states have adopted Section 1915(i) - Medicaid State Plan Option for Home and Community-Based Services.

• SELF-DIRECTION PROGRAM. Persons on Medicaid may qualify for financial assistance that can be used to purchase necessary home and community-based services and supports, including payment to the family caregiver or to pay for respite. These programs are known by different names, which are chosen by the states. Click here to find out more about state self-direction programs.

U.S. Department of Veterans Affairs (VA)

Eligible veterans can receive non-institutional respite, outpatient geriatric evaluation and management services, and therapeutically-oriented outpatient daycare. Respite care may be provided in a home or other non-institutional setting, such as a community nursing home. Ordinarily, respite is limited to no more than 30 days per year. The services can be contracted or provided directly by the staff of the Veterans Health Administration (VHA) or by another provider or payor. Contact your loved one's VA liaison to explore your options.

National Family Caregiver Support Program

If you are caring for someone over the age of 60 or someone with Alzheimer's or other dementias, funding may be available through the National Family Caregiver Support Program administered through your local Area Agency on Aging (AAA). Contact your AAA about respite funding options. Find your local AAA by visiting Eldercare.gov or calling (800)-677-1116.

State family caregiver support or respite programs

These are not available in every state. If your state has a state-funded family caregiver support or respite program, you may have respite funding available. Click here for more information about a range of caregiving supports by state.

Lifespan Respite Care Programs

These are not available in every state, but the ones that do often provide respite vouchers, grants, or stipend programs to help families pay for respite through self-directed programs*, especially for those caregivers who do not qualify for other publicly funded programs. See if your state has a Respite Voucher Program and apply.

*Remember that self-directed programs are Medicaid-managed.

Lifespan Respite Care may also advocate for volunteer or faith-based respite services that offer free or low-cost respite care. State Lifespan Respite Care programs may also work in collaboration with a State Respite Coalition. Contact your State Lifespan Respite Care Program or State Respite Coalition for more information.

Private funding sources and faith-based organizations

Check out these sources to get an idea of the programs available. This is not an exhaustive list and you are likely to find more by conducting your own search:

• Contact your local Alzheimer's Association or area Alzheimer's Foundation of America members to learn what kind of financial assistance may be available for respite care.

• The Hilarity for Charity (HFC) Caregiver Respite Program, in conjunction with Home Instead, delivers 3-6 months of free, professional, in-home care.

• The Association for Frontotemporal Degeneration (AFTD) has the Comstock Respite Grant Program.

• The National Organization for Rare Diseases (NORD) offers financial assistance for respite care (up to $500 annually) to caregivers who meet income eligibility guidelines and are caring for a child or adult with a confirmed rare disease diagnosis.

• Some local or state affiliates of organizations such as Easterseals, The Arc, the National Multiple Sclerosis Society, and the ALS Association may offer respite funding assistance or services on a sliding fee scale.

Many faith-based organizations provide a range of home and community-based services, including respite, for disabled people, older adults, and their family caregivers, at no or low cost. Check with your local faith organizations, starting with your loved one's organization (if they are - or were - a member of one).

Average costs

Average costs of different types of respite care according to the 2021 Aging & You Genworth survey:

• Short-term, on-demand services like adult day care are the least expensive, with costs averaging $74 a day nationally.

• Assisted living facilities are the next most affordable option, averaging $141 a day.

• In-home care is the most expensive option, averaging $150 a day for a home health aide.