Respite and formal support, and how to actually get it

After · 8 min read

There is a formal support system for carers and most carers never touch it, largely because nobody tells them it exists. The entry point is the Eldercare Locator, run by the federal Administration for Community Living, reachable on 1-800-677-1116, which connects you to your local Area Agency on Aging. Those agencies administer carer support programs, and respite can also come through the Medicare hospice benefit, through state programs, and through the ARCH National Respite Network's provider locator. Since 2022 there has also been a National Strategy to Support Family Caregivers, which sets out hundreds of federal and state actions and is a useful map of what is supposed to exist.

Why it exists

The system is real but it is not marketed. Carers are identified by nobody, referred by nobody, and reached only if they call. That is precisely why a module naming the phone numbers is more useful than one describing the concept.

The federal recognition is recent and it matters. The 2022 National Strategy to Support Family Caregivers, developed under the RAISE Family Caregiving Act and the Supporting Grandparents Raising Grandchildren Act, sets out nearly 350 federal actions across fifteen agencies and more than 150 further actions for states and communities. Its existence is the reason a carer can now reasonably ask what is available.

Respite in particular is under-used because it is misunderstood as an admission of failure rather than as a designed component of care. It is built into the Medicare hospice benefit for exactly this reason.

How it actually works

Call the Eldercare Locator on 1-800-677-1116, or search it online. It is operated by the Administration for Community Living, part of the Department of Health and Human Services, and it connects people to Area Agencies on Aging and community based services. Ask specifically what is available for the carer, not only for the person receiving care.

Ask the Area Agency on Aging about the National Family Caregiver Support Program and about state respite funding. Programs and eligibility vary by state, and the agency will know what applies locally. Ask about waiting lists at the same time, because several programs have them and joining one early costs nothing.

If the person is on hospice, ask for inpatient respite care by name. It is covered under the Medicare hospice benefit with coinsurance of up to 5 percent, and it exists so that the household can rest. Ask before you are desperate, because arranging it takes a little notice.

Use the ARCH National Respite Network's respite locator to find providers in your area, and ask your own clinician and the care team what they know of. Local knowledge is frequently better than any directory, and the care team already knows which services in your area are good.

Where you stand

You are entitled to ask for services in your own name. Carer support programs exist to support the carer, which means you are the client rather than a proxy for someone else.

You are entitled to ask what a program costs and what it is funded by before accepting it. Some are free, some are sliding scale, some are funded through Medicaid waivers with their own eligibility rules. Ask directly and ask in writing where money is involved.

You are entitled to appeal a denial. Where a program is funded through Medicaid or another benefit, denials carry appeal rights, and those rights are frequently not mentioned unless you ask. Request the decision in writing and ask what the appeal route and deadline are.

This is the area of the entire library where state variation is greatest. Medicaid home and community based services waivers, state respite funds, and whether a state pays family carers all differ substantially, and eligibility can turn on the care recipient's income, diagnosis and setting. Only your Area Agency on Aging or state Medicaid office can answer for your situation.

What to do

The mistakes that cost people

Waiting until crisis to ask. Many programs have waiting lists, and joining one while things are manageable costs nothing.
Asking only about services for the person you care for. Several programs are for the carer specifically, and they are not offered unless requested.
Accepting a verbal denial. Written decisions carry appeal rights and verbal ones cannot be appealed.
Assuming what a friend received in another state applies to you. This is the area where state variation is widest.

Words you will meet

administration for community living: The federal agency within the Department of Health and Human Services that funds services for older adults, people with disabilities and their carers.
national family caregiver support program: A federally funded program delivered through state and local agencies that provides information, counseling, training and respite to family carers.
home and community based services: Medicaid funded services that support someone at home rather than in an institution, with eligibility rules that vary by state.
raise family caregiving act: The federal law under which the National Strategy to Support Family Caregivers was developed.
respite locator: A searchable directory of respite providers maintained by the ARCH National Respite Network.
medicaid waiver: A state program permitted to depart from standard Medicaid rules in order to fund community based care, often with its own waiting list.

What this does not cover

This module does not cover paid family leave, which varies by state and by employer, or long term care insurance, which is a private product with its own terms. It also does not cover services for carers of people under 60, where eligibility rules differ and the Area Agency on Aging may not be the right route.

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