If you read the excellent KFF Health News/New York Times series “Dying Broke” or attended the HJ24 session on reporting on the growing crisis of long-term care, then you may already have some sense of how broken the U.S. long term-care system is.
Reporting on long-term care can be a little tricky, due to overlapping payment sources, federal vs. state regulations, and a potpourri of local and state programs, services and supports. Here’s what to keep in mind as you pursue stories on this topic.
Medicare Many people assume that nursing home care is covered under their Medicare or Medicare Advantage plan. However, Medicare does not pay for long-term nursing home coverage. It does pay for skilled care in a rehabilitation or nursing facility for a limited period of time — 100 days per benefit period — that is “ necessary to improve or maintain your current condition, or to prevent or delay it from getting worse,” following a qualified hospital stay for a serious condition (think hip fracture, heart surgery, head injury, etc.). Skilled nursing facilities are often connected with nursing homes, thereby leading to some confusion. Original Medicare will cover home health care in conjunction with skilled nursing care or therapy, but not as a stand-alone service. It also does not cover care for assistance with activities of daily living, such as bathing, dressing, or toileting.
Medicaid This is the joint federal-state health program that covers health care for those below certain income levels, including adults under age 65 and children. Eligibility varies by state, although most have expanded eligibility limits under the Affordable Care Act. Many older adults have both Medicare and Medicaid, and are considered dual-eligibles. (This January 2024 tip sheet provides more specifics). Medicaid pays for 60% of nursing home care in the U.S.
Long-term care insurance While coverage varies by policy, long-term care insurance usually pays for all or part of nursing home care, some assisted living expenses, home health care, adult day care and other services an older adult may need. Premiums vary, and policies can be difficult to get, since few companies offer this coverage. Companies also often limit the coverage due to pre-existing conditions or have high-priced premiums.
Housing and care support
Nursing homes These facilities offer the highest level of care, including nursing, 24-hour supervision, three meals a day, and assistance with everyday activities. Rehabilitation services, such as physical, occupational, and speech therapy, are also available. The average annual cost of nursing home care in the U.S. in 2023 was $104,000 for a semi-private room and $116,000 for a private room, according to Genworth Financial’s Cost of Care survey. Costs are paid either out of pocket or with assistance from Medicaid or long term care insurance.
Assisted living These may be a good fit for people who need help with daily care, but not as much help as a nursing home provides. Facilities range in size from as few as 25 residents to 100 or more. Residents usually have their own rooms or apartments, with shared living and dining spaces. Different levels of care are offered, with residents paying more for extra services. The average cost of assisted living in the United States is $4,500 per month, or $54,000 annually, according to the National Council on Aging. Cost varies depending on state, the type of community/facility, and level of care needed. Genworth Financial’s Cost of Care survey pegs this cost at $5,300 per month, or $64,000 per year based on 2023 data.
Board and care homes These are also known as group or residential homes, usually with 20 or fewer residents. Rooms may be private or shared and residents receive help with personal care and meals. There is usually no skilled nursing or medical care provided. Costs are primarily borne by the resident or their family — Medicare does not cover these costs, although Medicaid may offer partial coverage, depending on the state and eligibility.
Continuing care retirement communities Also known as CCRCs or life care communities, this option offers varied levels of care on one campus, depending on need. Many residents start out in independent housing, then may move to the assisted living facility or receive home care in their own independent unit. If needed, they can enter the community’s nursing home. CCRCs can be very expensive — communities usually charge a one-time entrance fee and a monthly fee after that. Most of the cost is out-of-pocket, although Medicare, Medicaid, and long-term care insurance may cover some services, depending on the level of care provided.
Home health care Don’t confuse home health care with home care. They’re two different types of services. Home health care encompasses a range of clinical services provided by licensed nurses and therapists that are given in the home for an illness or injury. This may include intermittent nursing care, physical, speech or occupational therapy, or other skilled health services. Home health care is usually only necessary for a short time as an alternative to in-patient care. Medicare has strict eligibility criteria for home health care services.
Home care This is non-skilled care given by professional caregivers, like bathing, feeding, dressing, help with meals, assistance with walking, transportation, or other daily tasks. These services may be covered under Medicare if they’re part of the broader home heath care coverage — for example, if a person is unable to leave home due to illness or injury and needs assistance with bathing or dressing. Some Medicare Advantage plans and long-term care insurance policies will pay for home care aides or companions, but there are normally caps on the number of hours or days for this care. Many people hire home care aides privately, either through a licensed home care agency or through word of mouth, which may be less expensive but is also unregulated. Private pay home care can quickly become costly. On average, 44 hours of home care per week can cost someone about $75,000 a year.
Some Medicare Advantage plans will cover the cost of certain in-home care services, such as companion care and help with some activities like transportation or shopping. Some plans offer a limited number of hours of home care, meal delivery, or other support, but for those needing more care, this option is quickly used up. Additionally, a 2024 study from the University of Washington School of Medicine found that Medicare Advantage beneficiaries actually receive fewer home health visits and have worse outcomes than those on original Medicare.
Adult day services/day care These services can be a boon for older adults, people with disabilities, and their caregivers. They’re a safe, community-based setting for those who need some supervision during the day or who may benefit from social interaction and engagement. These day centers can address many of the health and nutritional needs of older people, along with cognitive or physical limitations in professionally staffed group environments, according to The National Adult Day Services Association. There are more than 7,500 adult day services centers across the United States, which provide a supportive culture for those in need of assistance. They allow caregivers to continue working during the day, and at an average cost of $2,000 per month, are a more affordable alternative to other long-term services. The NASDA center locator can help families find an appropriate center near them.
Community services and supports These are specific programs or services offered to older people in the community who need help. It may be due to cognitive decline, frailty, inability to drive, or inability to do household tasks like cooking or shopping due to chronic illness or some other aging-related reason. Area Agencies on Aging or the city, county or state office on aging is usually the best place to find out about various community services, which may include medical care, home maintenance and repairs, transportation, meals, and more. Many programs have waiting lists and income eligibility may apply. It can also be time-consuming to find and enroll in many of these services. However, community programs like PACE and CAPABLE are among those helping older adults age at home, rather than in institutional settings and reduce health care costs as well.
The reality is that for many older Americans, long term care and support is a patchwork of family, friends, neighbors, and a few cobbled-together community services, like Meals on Wheels or friendly visitor programs. An older person may not be sick enough or frail enough to need nursing home care, Assisted living facilities are financially out of reach for many, and most older people prefer to age in place whenever possible.
When reporting on long-term care for older adults, it’s important to bear in mind the differences in and between payment, housing and service options. Services and programs vary by state, insurance plan, and community. For example, it is often more difficult to find in-home assistance in rural areas, while those living in cities may pay more for help than those living in the suburbs.
Story ideas
Contact your local area agency on aging — are there waiting lists for certain programs, like PACE? Why? Is it a lack of participating clinicians, state budget cuts, high demand or some other reason?
Profile a caregiver (or several) trying to balance outside employment with caring for an elderly parent. How are they managing? Are they receiving outside help through an aide or adult day care? How is this affecting their job? Look at both the financial and emotional tolls.
Is there any such thing as “affordable” assisted living? What is the average cost of living in such a facility in your community? What options exist for everyone else who can’t afford that level of care?
Assisted living facilities are regulated and licensed by each state, not federally. Are the ones in your community meeting staffing and other requirements ? How often are they inspected and by whom? What types of violations have they been penalized for — and are those violations made public? If not, why not? Where can consumers go for information?
Many communities are struggling to find home care and nursing home staff — what is the situation like in your community? Are agencies or facilities offering incentives or additional training and a real career path?