Respite Care

Respite care is care provided on a short-term, planned basis so that the unpaid family member or friend who normally provides care can be relieved of it. The defining feature is the purpose rather than the setting or the clinical content: an aide sitting with someone at home for four hours, a week in a nursing facility, or a day at an adult day program are all respite when the point of them is to give the regular caregiver a break.

That makes it a strange item in a financial plan, because the person the money is spent on is not the person the service is for. It also makes it easy to postpone, which is why it belongs in a written care plan rather than in the category of things a family will get around to. Caregiver capacity is the input that keeps every other part of a home-based care arrangement working, and the cost of losing it is the cost of the setting the family was trying to avoid.

Medicare's only respite benefit lives inside hospice, and its limits are precise. 42 CFR 418.302(b) sets out the four categories of hospice care CMS pays for, and (b)(3) defines an inpatient respite care day as "a day on which the individual who has elected hospice care receives care in an approved facility on a short-term basis for respite". The limit is in (e)(5): "Payment for inpatient respite care is subject to the requirement that it may not be provided consecutively for more than 5 days at a time. Payment for the sixth and any subsequent day of respite care is made at the routine home care rate." So the sixth day is not forbidden; it is paid at the wrong rate, which in practice is what ends the stay.

The patient's own liability is one of only two coinsurance items in the whole hospice benefit. 42 CFR 418.400(b)(1) sets coinsurance for each respite care day at "5 percent of the payment made by CMS for a respite care day". Paragraph (b)(2) then caps it: the individual's total respite coinsurance during a hospice coinsurance period "may not exceed the inpatient hospital deductible applicable for the year in which the hospice coinsurance period began". That deductible is reset annually by CMS and is published on medicare.gov, so the useful thing to carry away is the shape of the rule rather than a number. Paragraph (b)(3) defines the coinsurance period itself: it begins on the first day a hospice election is in effect and ends at the close of the first period of 14 consecutive days on none of which an election is in effect.

The Older Americans Act route is the one most families have never heard of. The National Family Caregiver Support Program, established in 2000 under section 371 of the Older Americans Act of 1965 as amended, Title III-E, makes grants to states and territories based on their share of the population aged 70 and over. The Administration for Community Living lists five service types the grantees provide: information about available services; assistance in gaining access to services; individual counseling, support groups and caregiver training; respite care; and supplemental services on a limited basis.

Who counts as an eligible caregiver was set by the 2020 reauthorization, and the list is broader than "adult child of an older parent". ACL lists: adult family members or other informal caregivers providing care to individuals aged 60 and over; adult family members or other informal caregivers providing care to individuals of any age with Alzheimer's disease and related disorders; older relatives who are not parents, aged 55 and over, caring for children under 18; and older relatives, including parents, aged 55 and over, caring for adults aged 18 to 59 with disabilities. Access is through the state unit on aging and the local area agency on aging, and because the money is a capped grant rather than an entitlement, what is available depends on the area and the year.

Medicaid waivers cover it, and respite gets a carve-out nothing else gets. 42 CFR 440.180(b)(7) lists "Respite care services" among the services a state may include in a home and community-based services waiver. The unusual part is in the funding limits. 42 CFR 441.310(a)(2) makes federal financial participation unavailable for "the cost of room and board except when provided as ... Part of respite care services in a facility approved by the State that is not a private residence". Room and board is otherwise the thing Medicaid waivers pointedly do not pay for, and respite in an approved facility is the named exception. As with every waiver service, the state defines the service and may cap enrollment.

Everyone else pays privately, and the practical consequence is that respite is bought in small units. For a family outside hospice, outside a waiver and outside what the local area agency on aging can fund, respite is purchased the same way any other in-home or facility care is purchased: by the hour, by the day, or by a short facility stay. Some long-term care insurance policies also provide for it, on terms set by the individual contract rather than by any general rule, which is a question for the policy rather than for a general page. The planning point is that respite competes for the same dollars as the ongoing care, so it tends to be the line that gets cut, which is exactly backwards if the ongoing care depends on a caregiver who is still functioning.

1. Establish which route, if any, is open. Hospice election opens Medicare's inpatient respite level. A Medicaid waiver may cover respite as a named service. The local area agency on aging administers the Title III-E funds. Otherwise it is private pay.

2. Plan it rather than waiting for a crisis. Respite is a scheduled service, and facilities and agencies need notice.

3. Inside hospice, watch the 5-day rule. Payment for inpatient respite may not run consecutively beyond 5 days; the sixth day and onward drop to the routine home care rate.

4. Know your coinsurance shape. 5 percent of the CMS respite day payment per day, with total respite coinsurance in a hospice coinsurance period capped at that year's Medicare inpatient hospital deductible.

5. For everything else, price it like any other care and put it in the care budget rather than treating it as an extra.

A hypothetical, using the structure rather than any Medicare figure. Malcolm is on hospice at home, cared for by his wife. The team arranges a 5-day inpatient respite stay. Suppose CMS's respite day payment for their area is $520 a day, a placeholder chosen for the arithmetic and not a published rate. His coinsurance is 5 percent of that, or $520 x 0.05 = $26 a day, so 5 days costs him $26 x 5 = $130. If the family used a second 5-day stay later in the same coinsurance period, that would be another $130, running the total to $260, and it would keep accumulating that way until it reached the year's Medicare inpatient hospital deductible, at which point 418.400(b)(2) stops it. The 5 percent and the cap are the rule; the $520 is illustrative, and the real deductible is published each year on medicare.gov.

Pros

• It is the intervention that protects the caregiver, and the caregiver is what a home-based care arrangement actually runs on.
• Inside hospice, it is a defined Medicare level of care with a small percentage coinsurance and an annual ceiling on that coinsurance.
• The Title III-E network reaches caregivers with no Medicaid eligibility and no hospice election, which is a wide gap otherwise.
• Medicaid waiver respite is the one home and community-based service for which federal money can pay room and board in an approved facility.
• It can be arranged in almost any setting, so it fits around the care already in place.

Cons

• Outside hospice, Medicare pays nothing toward it.
• The hospice benefit caps a stay at 5 consecutive days of respite-rate payment, which does not cover a longer absence.
• Title III-E money is a capped grant rather than an entitlement, so availability and waiting times differ by area and by year.
• Waiver coverage is defined and capped by each state.
• Because it is easy to defer, it is usually the first line cut from a care budget, and the consequence of cutting it is invisible until the caregiver stops.