Chapter 8 Introduction

Long-term services and supports (LTSS) encompass a broad range of assistance. They are needed by people of all ages who cannot function independently due to physical or mental impairments. A core service is assistance with activities of daily livingSkills necessary for daily care of oneself such as bathing and showering, personal hygiene and grooming, toilet hygiene and self-feeding. (ADLs). These include bathing and dressing. Another fundamental service is assistance with instrumental activities of daily livingManaging medications, preparing meals, managing finances, using the telephone, housekeeping, doing laundry, shopping, using transportation. (IADLs). These include paying bills, managing medications, and doing laundry and other household tasks. In 2018, an estimated 14 million adults of all ages, living in the community andactivities of daily livingSkills necessary for daily care of oneself such as bathing and showering, personal hygiene and grooming, toilet hygiene and self-feeding. (IADLsManaging medications, preparing meals, managing finances, using the telephone, housekeeping, doing laundry, shopping, using transportation. ). These include paying bills, managing medications, and doing laundry and other household tasks. In 2018, an estimated 14 million adults of all ages, living in the community and in nursing homes, needed LTSS due to physical, cognitive, and other mental impairments. Of that population, 7.9 million were age 65 and older.

LTSS also includes certain nursing and medical procedures. It consists of care management, habilitation and rehabilitation, and social services. In some cases, LTSS can include assistive technology and home modifications, as well as services to help people with disabilities maintain employment. Services and supports for unpaid caregivers such as respite, education and training, counseling, support groups, and care consultation also fall under LTSS.

LTSS may be provided in homes by family members and friends, paid aides, assistants, nurses, and other health and social service professionals. For those who cannot be cared for in their own or in a relative's home, LTSS is provided in community settings such as adult day service centers, assisted living, and other residential care settings. It is also offered in nursing facilities.

It is impossible to predict who might need LTSS in the future, when they might need it, or for how long. Many people may be able to get by with the help of family members, friends, and other unpaid caregivers. But a significant number will require expensive paid skilled and unskilled services over long periods. For many, this can lead to impoverishment.

Surveys indicate that most people who need LTSS strongly prefer to receive these services in their home to enable them to remain there, especially if they need less than round-the-clock assistance. If they need to move to receive services, people strongly prefer to live in an assisted living residenceA residential care setting that provides meals, housekeeping, activities, help with activities of daily living, and health-related services. These settings are regulated by the state and vary considerably in the type and level of care they provide. or other residential care settings rather than a nursing facility. Providing services in home and community settings reduces the number of people in institutions.

These preferences explain in part the decline in the number of people in nursing facilities. From 2003 to 2016, nursing residents went from 1.5 million to 1.3 million. Further declines are likely in the near future due to increased home and community-based service options for older people with disabilities and the growth of home careA range of services provided in the home, including health-related care, personal care, and supportive services. and assisted living.

Also driving the trend are increased use of technology and increased public funding for home and community-based services. In 2020, the COVID-19 pandemic resulted in considerable mortality among nursing home and other long-term care facility residents. Those high death rates, the Centers for Medicare & Medicaid Services restrictions on elective surgeries (like joint replacement, which often result in postacute rehab stays), and other factors associated with the pandemic response further reduced occupancy. Between the end of 2019 and the end of 2020, the nursing home population in the U.S. fell another 100,000 residents, or 10 percent.

Some people who need assistance with ADLs or IADLsManaging medications, preparing meals, managing finances, using the telephone, housekeeping, doing laundry, shopping, using transportation. will pay out of pocket to receive all or part of that assistance at home. However, most families do not have the ability to pay for significant services out of pocket. Medicare will pay for short-term home health services after a hospitalization, but not for long-term care. Genworth's 2020 Cost of Care Survey found that, on average, home health and homemaker servicesThese services include meal preparation, cleaning, laundry, shopping, and other household chores; they may  include informal monitoring of clients’ health and functional status. cost around $4,500 per month at a national level. Adult day services cost an average of $1,603 per month nationally. Services provided in a nursing home are much more expensive: $7,756 per month for a semi-private room or $8,821 per month for a private room.

LTSS are expensive and unpredictable. Yet, the U.S. has no comprehensive system to address the potential risks to families who might face unexpected and unaffordable costs. And the number of available caregivers compared to those who need care is shrinking.

The current system for funding and providing LTSS is fragmented, uncoordinated, and costly. Apart from short nursing home stays and limited home health services, Medicare does not pay for LTSS. The Medicaid program is the largest public payer of LTSS. But it requires participants to meet stringent income and asset criteria. Furthermore, many facilities will not take new clients who are using Medicaid. Less than 10 percent of LTSS expenditures are paid for by private long-term care insurance.