Understanding Long-Term Care

Many people are faced with making decisions about long-term care for themselves or another family member or friend, and often need help with understanding long-term care, coverage, costs and paying for those costs.
Anyone at any age may need long-term care. An accident or a sudden, serious illness can create a need for care; but so can the slow progression of chronic diseases such as rheumatoid arthritis, Alzheimer’s disease or other dementias, or any other health condition that limits the ability to perform everyday tasks.
Alzheimer’s and similar dementias that affect how the brain and nervous system work often lead to the need for long-term care. Over half of nursing home residents have a cognitive disorder like Alzheimer’s disease. Not only is this a devastating condition for patients and their families, but there is also no known cure at the present time.
Age or frailty can also be contributing factors. People who live into their 80’s and 90’s are more likely to need long-term care than those at younger ages.. Whether a person can remain at home once they begin to need long-term care often depends on their support system. Many older people do not live near their families and their support system may consist of neighbors and friends who may not always be available. If an older person does live near his or her family, family caregivers may work full time or be unable to offer as much help as is needed.

What is Long-Term Care?

Long-term care involves an array of services that are necessary to meet the needs of individuals who are coping with a disabling health condition or dementia that makes managing daily tasks and activities difficult or impossible. Available services typically focus on helping individuals with everyday personal and household activities, generally over a long period of time.
Activities related to the basic personal tasks of everyday life are known as “activities of daily living” or “ADLs”. They include being able to independently bathe or walk around one’s home without someone who can provide care or assistance, or supervision.

Activities of Daily Living Include

  • Bathing – getting into and out of the tub or shower; washing oneself in the tub or shower, or by sponge or bed bath.
  • Transferring – getting into and out of the tub or shower; washing oneself in the tub or shower, or by sponge or bed bath.
  • Ambulating – walking from place to place with or without mechanical assistance.
  • Dressing – getting, putting on, and taking off all necessary clothing; including managing buttons, zippers, braces and splints.

  • Continence – voluntary control of bowel and bladder function or being able to use devices such as a catheter or continence pad and all associated hygiene.

  • Toileting – getting to and from, and on and off the toilet; caring for clothing and performing regular personal hygiene.
A person may be unable to perform one or more of these functions because of a physical impairment, or because they no longer remember to do them, like toileting, or lack the capacity to remember how to do them.

What is Long-Term Services and Supports?

Most long-term care is provided in the home, but it can also be provided in the community, in an assisted living facility, or nursing home. Because long-term care is provided through a wide variety of services and may involve different types of care settings, services and providers, and sources of payment, it is also known as Long-Term Services and Supports, or LTSS.

Levels of LTSS

  • Skilled Care – Skilled care provided by licensed practitioners including medical or nursing care, and physical, speech, or occupational therapies. A very small number of individuals who need LTSS receive skilled medical or nursing care. Skilled care is usually associated with a health event or needs and tends to be short-term in duration.
  • Personal Care – Hands-on or stand-by care or assistance with basic, personal ADLs. Most individuals who receive or need LTSS require some help with personal care and tasks they cannot do by themselves.
  • Supervisory Care – Monitoring, supervision, and stand-by help with ADLs or to ensure that individuals do not harm themselves or others. Supervisory care is most often needed because of cognitive impairment or dementia. This provision of LTSS depends on an individual’s condition, preferences, and family circumstances, the care options available in the community, as well as the individual’s ability to pay for different types of care.

Different LTSS Settings

  • Home

    A broad range of services can be provided in the home by paid professionals or caregivers (known as formal caregiving) through home care or home health care agencies, or by family and friends (known as informal caregiving). Paid professionals include nurses and therapists providing skilled care (e.g., speech and/or physical therapy, or medication management) and personal care aides or home health aides helping with personal care, housekeeping, meal preparation, or other non-skilled activities at home.

    Nationally, over 40 percent of home care is provided by informal caregivers (family and friends) on a weekly basis. Informal caregivers provide a vast array of emotional, financial, nursing, social, homemaking, and other services on a daily or intermittent basis.

  • Adult Day Care Centers – Community-Based Adult Services
    Services may be provided in a coordinated program for adults in a community-based group setting, usually located at an Adult Day Care center.
  • Congregate Living/Apartments
    Home for some may be in an apartment as part of a congregate living community. This option consists of individual apartments, a common meal area, housekeeping services, and the availability of some assistance with activities of daily living (ADLs). In some cases, social services coordination, transportation, and recreational activities are also offered in these settings. Congregate or supportive housing may be subsidized or available for a fee.

  • Assisted Living Facilities
    These facilities provide an alternative living arrangement for people who do not need nursing home care, but who need more support, assistance, or supervision than is available at home. The facilities can be small, more home-like settings, or larger facilities that combine independent living units and assisted living services. Some of these facilities include dedicated assisted living units. These forms of long-term care facilities are licensed as Residential Care Facilities for the Elderly (RCFE) and are sometimes referred to as personal care homes, or board and care homes. Families seeking care should be aware that unlicensed board and care homes exist that are not bound by any state regulations and should always determine if a facility is licensed by the state. Assisted living support may also be offered in large facilities that are part of a Continuing Care Retirement Community (CCRC). A CCRC offers a full range of living options, from independent living to assisted living to skilled nursing home care all in one location.

    The need for LTSS in a person’s lifetime may be short-term, long-term or none at all. Nationally, it’s predicted that 70 percent of people over 65 years of age will need some form of LTSS during their lifetime and will require it for varying amounts of time. Of special consideration is that while many people may need LTSS, they are often unable to use the services in their community due to costs, lack of access to and/or awareness of the services, and other factors.

  • Nursing Homes
    Nursing homes provide skilled care for people with chronic illnesses or who are recuperating from an illness or who need regular nursing care such as physical therapy, but not hospitalization. Some people may use a nursing home for a few days or weeks after a hospital stay to recover from an illness or injury. Others may move into a nursing home when they can no longer stay safely in their own home. Nursing homes usually provide basic room and board, personal care (help with ADLs), nursing care, rehabilitation and therapy programs, social activities, and supervision.

Paying for LTSS

Most people think that Medicare pays for long-term care services. This is a common myth. Medicare does not pay for what comprises the majority of LTSS – non-skilled assistance with activities of daily living or supervision needed as a result of dementia or other forms of cognitive or physical impairment.
Medicare may pay for long-term care provided in the home for a short period of time, if certain stringent requirements of the Medicare program are met. An individual must be homebound and require skilled nursing or rehabilitation services that only a licensed professional can provide, at least several times weekly for a specified period of time, usually for rehabilitative purposes only. The services must be received from a licensed home health care agency that participates in Medicare.
In fact, the costs of LTSS are typically paid out of personal income, savings, and/or assets. Some people purchase long-term care insurance, some become impoverished and become eligible for Medi-Cal, others purchase other types of financial products such as annuities or life insurance policies with long-term care provisions in the form of riders.
Medi-Cal will pay for the care of people who meet the low-income and limited resources eligibility criteria. However, relying on Medi-Cal to cover LTSS may reduce a person’s options with respect to location, amount of care received, and care providers. Medi-Cal is California’s version of Medicaid, a joint federal and state program for people with low income and few assets.
In-Home Supportive Services (IHSS) will help pay for services to help people to remain safely at home. To be eligible, one must be a resident of California, over 65 years of age, be determined eligible for Medi-Cal, and/or meet specific eligibility criteria for the Supplemental Security Income/State Supplementary Program (SSI/SSP) for the aged, blind and disabled. The IHSS program can provide domestic and related services such as house cleaning; menu planning; laundry services; meal preparation and cleanup; and reasonable shopping errands. IHSS is considered an alternative to out-of-home care, such as nursing homes or board and care facilities.

Adult Day Program, Adult Day Health Care (ADHC), and Community Based Adult Services (CBAS) programs are community-based non-medical and medical care day programs that provide services to older persons and adults with chronic medical, cognitive or mental health conditions, and/or disabilities who are at risk of needing institutional care. For individuals who meet low-income eligibility criteria and are enrolled in Medi-Cal, CBAS services are included as a benefit. Services may also be offered on a private pay basis.

What is Long-Term Care Insurance?

One method of paying for long-term care not covered by Medicare or other associated coverage is an insurance policy known as a stand-alone long-term care policy. Long-Term Care Insurance (LTCI) policies can pay benefits for a wide range of services, including home care, community-based care and assisted living, as well as skilled nursing facility care. As with most other forms of insurance, it cannot be purchased once a person needs the benefits. California state law requires special consumer protections, and spells out certain standards companies must meet to sell their products in the state.
In California, companies can sell three types of stand-alone LTCI policies:
  1. Nursing home and Residential Care Facility for the Elderly (RCFE) only;
  2. Home care only;
  3. Comprehensive (that pays benefits in a wide variety of settings).
  • Nursing home and Residential Care Facility for the Elderly (RCFE) only;
  • Home care only;
  • Comprehensive (that pays benefits in a wide variety of settings).
Each policy, regardless of the type, has some common features:
  • A daily benefit
  • A deductible or an elimination period
  • A maximum number of years or dollar amount of benefits
  • Health underwriting
  • Inflation protection (companies are required by law to offer this option)
LTCI can pay benefits for various types of care received in a variety of locations:
  • In places like skilled nursing or assisted living facilities, or at home through home health care,
    personal care, and homemaker services;
  • Hospice care;
  • Respite care; and
  • In community-based programs such as adult day care, adult day health care, or Alzheimer’s day care.
The type of care that people generally need in any of these locations is assistance or supervision with ADLs, or supervision because of a cognitive disorder like Alzheimer’s disease or other dementia. The choices someone makes about these items, plus the age of the person applying for coverage and sometimes their health condition, will determine the premium a person pays for a long-term care insurance policy.
To help consumers and counselors understand these products the California Department of Aging created an informational handbook titled “Taking Care of Tomorrow – A Consumer’s Guide to Long-Term Care.” The guide is available for distribution to Medicare beneficiaries and/or their representatives and can be found on the California Department of Aging (CDA) website.

We Can Help

You can also contact HICAP for counseling and assistance with long-term services and supports and long-term care insurance policies. HICAP has specially trained and designated counselors who can review your LTCI policy with you to ensure that you understand the benefits and costs associated with those benefits.

(714) 560-0424
(800) 434-0222

Health Insurance Counseling & Advocacy Program
Services also available in Spanish, Vietnamese, Korean, and Chinese
HICAP does not sell or endorse any insurance product
SHIP State Insurance Assistance Program

This project was supported, in part, by grant number 90SAPG0052-03-00 from the U.S. Administration for Community Living, Department of Health and Human Services, Washington D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.

This project is funded in part through a grant from the California Department of Aging, as allocated by the Orange County Board of Supervisors and administered by the Office on Aging.