Long-term services and supports (LTSS) encompass a broad range of assistance needed by people of all ages who have physical, cognitive, or mental impairments and lack the ability to function independently. In their most basic form, LTSS consist of help with self-care and household tasks. The term includes personal assistance, adult day services, care management, habilitation and rehabilitation, social services, and certain medical care. LTSS may also involve assistive technology and home modification, as well as services to help people with disabilities maintain employment. LTSS may be provided in the home, in assisted living and other supportive housing settings, in nursing facilities, and in integrated settings, such as those that provide both health care and supportive services. LTSS include supports provided by family members, friends, and other unpaid caregivers. They also include supports provided to those unpaid caregivers, such as care consultation, education and training, counseling, support groups, and respite care.
An estimated 7.3 million people age 18 and older in the community and in nursing homes require help with basic activities of daily livingADLs include bathing or showering, dressing, getting in and out of bed or a chair, walking, using the toilet, and eating. , such as bathing and dressing. About 11.9 million require help with instrumental activities of daily livingIADLs include preparing meals, managing money, shopping for groceries or personal items, performing light or heavy housework, and using a telephone. , such as paying bills and riding a public bus. In addition, with the aging of the population, people who are aging with disabilities require increased attention that takes into account their unique needs. In general, LTSS provide ongoing, as opposed to short-term, help with these activities. LTSS can be expensive. The median annual cost of a private-pay nursing facility stay was $92,378 for a private room and $82,125 for a shared room, according to a 2016 study by Genworth Financial, Inc. The median hourly rate charged by agencies for certified home health aide services not covered by Medicare was $20; it was also $20 for licensed homemaker services. The median annual cost for a private one-bedroom unit in assisted living was $43,539, while the cost of adult day services averaged $68 per day. For people with severe impairments and no family support, the cost of home care can be much higher.
The US’ current system for providing and funding LTSS is largely uncoordinated, fragmented, and costly. The majority of LTSS are provided by unpaid family members and friends. These services have an estimated economic value of $470 billion annually (for family caregivers of people age 18 and older), which far exceeds the value of all paid LTSS services. In addition, many people needing these types of care pay out-of-pocket for some or all of them, accounting for about 19 percent of total LTSS expenditures.
Less than 10 percent of LTSS expenditures are paid for by long-term care (LTC) insurance. Many people cannot afford such insurance. Others are denied coverage because of medical underwriting; that is, insurance companies charge higher premiums or deny coverage to people who have preexisting health conditions that may increase their chances of needing services. LTC insurance may also lack important consumer protections and may not cover the particular LTSS that a person needs (for more information, see this chapter’s section Private-Sector Approaches to Financing Long-Term Services and Supports—Private Long-Term Care Insurance). Also, while Medicare does not pay for LTSS, Medicaid and some other federal programs do cover LTC under limited circumstances (for more information, see this chapter’s section Public-Sector Approaches to Financing Long-Term Services and Supports).
Because of LTSS’ high cost and limited third-party coverage, many older people fear impoverishment and becoming a burden to their families. Clearly, millions of Americans of all ages need LTSS, and the number may increase in the coming decades. Despite these pressures, the US does not have a comprehensive system to finance LTSS.
Surveys indicate that most people who need LTSS strongly prefer to remain in their homes, especially if they need less than 24-hour help. If they need to move to receive services, people strongly prefer to live in an assisted living residence or other residential setting, rather than a nursing facility. Despite large increases in the older population, the number of people in nursing facilities declined slightly from 1.5 to 1.4 million from 2003 to 2014. Further declines are likely in the near future due to increased service options for older people with disabilities and the growth of home care and assisted living. Also driving the trend are increased use of technology and increased public funding for home- and community-based services.
The availability of family caregivers will decline rapidly in the next couple of decades as baby boomers age out of the caregiving years and into their later years when their own risks of needing care are much higher. In 2010 the ratio of potential caregivers age 45–64 to those at high risk of needing care (age 80 and older) was 7:1. By 2030 that ratio is projected to decline sharply to 4:1 and to further fall to less than 3:1 in 2050. By that time, all baby boomers will be in the high-risk years of late life. Higher divorce rates and childlessness will further complicate the availability of family care.
Addressing all these needs will require providing consumers with a robust range of information and assistance in understanding what services are available and how to pay for them. All states now operate Aging and Disability Resource Centers ( ADRCsAll states now operate Aging and Disability Resource Centers (ADRCs) as a single source of information and assistance about services for older adults and people with disabilities, regardless of their income or type of disability. A critical function of ADRCs is conflict-free care management… ) as a single source of information and assistance about services for older adults and people with disabilities, regardless of their income or type of disability. A critical function of ADRCs is conflict-free care management services; that is, advice from well-trained care managers who act without self-interest or financial reward with regard to the services they recommend.