Choosing Long-Term Care

"Long-term care" means helping people of any age with their medical needs or daily activities over a long period of time. Long-term care can be provided at home, in the community, or in various types of facilities. This section deals mainly with older people who need long-term care. However, the information also may be useful for younger people with disabilities or illnesses that require long-term care. When you look for long-term care, it is important to remember that quality varies from one place or caregiver to another. It is also important to think about long-term care before a crisis occurs. Making long-term care decisions can be hard even when planned well in advance.

Look for long-term care that:

• Has been found by State agencies, accreditors, or others to provide quality care
• Has the services you need
• Has staff that meet your needs
• Meets your budget

Research shows that to make the best choices, you need to think about:

• What your options are
• Whether they meet your or your family member's needs (physical, medical, emotional, financial, etc.)
• How to find the highest quality care

Research shows that many people do not know about or understand long-term care options. Following are brief descriptions of the major types of long-term care:

Home care can be given in your own home by family members, friends, volunteers, and/or paid professionals. This type of care can range from help with shopping to nursing care. Some short-term, skilled home care (provided by a nurse or therapist) is covered by Medicare and is called "home health care." Another type of care that can be given at home is hospice care for terminally ill people.

Community services are support services that can include adult day care, meal programs, senior centers, transportation, and other services. These can help people who are cared for at home-and their families. For example, adult day care services provide a variety of health, social, and related support services in a protective setting during the day. This can help adults with impairments-such as Alzheimer's disease-continue to live in the community. And it can give family or friend caregivers a needed "break."

Supportive housing programs offer low-cost housing to older people with low to moderate incomes. The Federal Department of Housing and Urban Development (HUD) and State or local governments often develop such housing programs. A number of these facilities offer help with meals and tasks such as housekeeping, shopping, and laundry. Residents generally live in their own apartments.

Assisted living provides 24-hour supervision, assistance, meals, and health care services in a home-like setting. Services include help with eating, bathing, dressing, toileting, taking medicine, transportation, laundry, and housekeeping. Social and recreational activities also are provided.

Continuing care retirement communities (CCRCs) provide a full range of services and care based on what each resident needs over time. Care usually is provided in one of three main stages: independent living, assisted living, and skilled nursing.

Nursing homes offer care to people who cannot be cared for at home or in the community. They provide skilled nursing care, rehabilitation services, meals, activities, help with daily living, and supervision. Many nursing homes also offer temporary or periodic care. This can be instead of hospital care, after hospital care, or to give family or friend caregivers some time off ("respite care").

Another type of long-term care takes place in home-like settings called Intermediate Care Facilities for the Mentally Retarded. They provide a wide variety of services to mentally retarded and developmentally disabled people from youth to old age. Services include treatment to help residents become as independent as possible, as well as health care services.

You can learn about long-term care options in your area by contacting:

• The Eldercare Locator (1-800-677-1116, weekdays, 9.00 a.m. to 8.00 p.m., EST). This service can refer you to your Area Agency on Aging.
• Area Agencies on Aging provide information on a wide variety of community-based services. Examples are meals, home care, adult day care, transportation, housing, home repair, and legal services.
• Your State or local Long-Term Care Ombudsman (call the Eldercare Locator for the number). Ombudsmen visit nursing homes and other long-term care facilities to check on and resolve complaints, protect residents' rights, and give emotional support to lonely older people. A call to your area Ombudsman can give you information on: the most recent State survey (inspection) report of the facility; the number of outstanding complaints; the number and nature of complaints lodged in the last year; and the results of recent complaint investigations.
• "Nursing Home Compare" http://www.medicare.gov/nhcompare/home.asp -- a Web site created by the Centers for Medicare & Medicaid Services, which runs Medicare and Medicaid. This site helps you locate nursing homes in your area. It also has inspection records for nursing homes that receive Medicare or Medicaid funds.
• Hospital discharge planners
• Social workers (some can be "case managers" or "care managers," who can help you coordinate long-term care services)
• Doctors and other health care professionals
• Local nursing facilities
• Volunteer groups that work with older people
• Clergy or religious groups
• Family and friends

There are three important questions to ask yourself when deciding about long-term care for yourself or a loved one:

1. What kind of services do I need?

2. How will I pay for these services?

3. How can I choose the best quality services?

Think of long-term care as a menu of services. A person may need only one or a few kinds of services. Or, several kinds may be needed over the course of a person's older years.

To help find out what kind of services you or a loved one need, check the items below that apply. Keep in mind that these needs may change over time.

Do you or your loved one need help with daily activities? Health care needs? Both? You can use the following chart to help you identify the type(s) of long-term care that meet your needs. This chart shows which types of long-term care services offer which kinds of help. The "Relative Costs" information shows how costly the settings can be when compared with each other.

(_) Shopping
(_) Preparing meals
(_) Eating
(_) Laundry and other housework
(_) Home maintenance
(_) Paying bills and other money matters
(_) Bathing
(_) Dressing
(_) Grooming
(_) Going to the bathroom
(_) Remembering to take medicines
(_) Walking
(_) Other _______________________
(_) Other _______________________

Health Care Needs*

(_) Physical therapy
(_) Speech therapy
(_) Occupational therapy
(_) Rehabilitation
(_) Medical nutritional therapy
(_) Oxygen
(_) Care for pressure ulcers or other wounds
(_) Alzheimer's disease care
(_) Health monitoring (for diabetes, for example)
(_) Pain management
(_) Nursing care services
(_) Other medical services provided by a doctor or other clinician
(_) Other _______________________

* as recommended by a doctor or other health care provider.

Long-term care can be very expensive. In general, health plans and programs do not routinely cover long-term care at home or in nursing homes. Here is some general information about long-term care coverage:

• Medicare is the Federal health insurance program for people age 65 and older and for some disabled younger people. Medicare generally does not pay for long-term help with daily activities. Medicare pays for very limited skilled nursing home care after a hospital stay. If you need skilled care in your home for the treatment of an illness or injury, and you meet certain conditions, Medicare will pay for some of the costs of nursing care, home health aide services, and different types of therapy.
• Medicaid is a Federal-State program that pays for health services and long-term care for low- income people of any age. The exact rules for who is covered vary by State. Medicaid covers nursing home care for people who are eligible. In some States, Medicaid also pays for some home and community services.
• Private Insurance. Medicare beneficiaries may supplement their policy with insurance purchased from private organizations. Most of these policies, often called Medigap insurance, will help pay for some skilled care, but only when that care is covered by Medicare. Medigap is not long-term care insurance. Commercial insurers offer private policies called long-term care insurance. These policies may cover services such as care at home, in adult day care, in assisted living facilities, and in nursing homes. But plans vary widely. If you have such a policy, ask your insurer what it covers. If you think you may need long-term care insurance, start shopping while you are relatively young and healthy, and shop carefully.
• Personal Resources. You may need to use resources such as savings or life insurance to pay for long-term care. Most people who enter nursing homes begin by paying out of their own pockets. As their personal resources are spent, many people who stay in nursing homes for a long time eventually become eligible for Medicaid.

Your State Health Insurance Program (SHIP) can give you general information about Medicare, Medicaid, managed care plans, and the types of health insurance that can supplement Medicare, including Medigap and long-term care insurance. Counselors also can help you with questions about your medical bills, insurance claims, and related matters. These services are free. To find the phone number of the SHIP office in your State, call the Medicare Hotline at 1-800-633-4227. Or, look at the consumer Web site for Medicare services, http://www.medicare.gov .

• In many States, home care agencies must be licensed. Check with your State health department to see if your State requires it. If so, be wary if an agency is not licensed.
• Ask if the agency is certified by Medicare. Medicare inspects home health care agencies to assure they meet certain Federal health and safety requirements. Medicare will pay for services only if the agency is Medicare-approved and if the services are covered by Medicare.
• If the home health care agency is certified by Medicare, you can review its survey report. Call the Medicare Hotline at 1-800-633-4227 and ask to be referred to the Home Health Hotline for your State. You can request a copy of the report from that hotline.
• Find out if the agency has been accredited (awarded a "seal of approval") by a group such as the Joint Commission on Accreditation of Healthcare Organizations (630-792-5800); http://www.jcaho.org ) or the Community Health Accreditation Program (1-800-669-1656; http://www.chapinc.org ).
• Contact your State or local consumer affairs office to see if any complaints have been filed against a home care agency. Also ask about the outcome of any complaint investigations.
• Whether you work with an agency or hire someone yourself, carefully check the backgrounds of the people who will be coming into your home. Ask for references who have worked with the agency or person. Call them, and ask about their experiences. Would they use the agency or person again?
• Does the home care worker have the necessary skills and training for your needs? Ask to see training certificates. Make sure the worker knows how to safely assist and care for patients.
• Does the agency have supervisors who check on the quality of care its workers provide?
• How does the agency follow up on and resolve complaints?

• All nursing homes that participate in Medicare or Medicaid are visited about once a year by a team of trained inspectors. They check the home and the care provided and prepare a survey report. You have a right to review the report, which must be posted in the nursing home. Speak to the nursing home administrator to learn more about any problems that appear on the report. Ask if the problems have been corrected.
• Call your State or local Long-Term Care Ombudsman. Ombudsmen visit nursing homes on a regular basis and know about each nursing home in their area. You can ask about the latest survey report and about complaints that have been filed. You can also ask what to look for when visiting local nursing homes.
• Compare the inspection records of your top choices by visiting the "Nursing Home Compare" Web site: http://www.medicare.gov/NHCompare/Home.asp.
• Some nursing homes have been accredited by a national group such as the Joint Commission on Accreditation of Healthcare Organizations (630-792-5800). It may be helpful to find out if the home participates in this voluntary process and to learn the results.
• Location is very important. Is the nursing home close enough so that family and friends can visit? Close enough for the resident's personal doctor to visit?
• The most important step is to visit-more than once-and look around. Go at different times of the day-for example, first thing in the morning and at mealtimes.
• Do residents seem to enjoy meals? Is there help for those who cannot eat on their own? If possible, eat a meal at the facility.
• Is the home clean and free of odors? Is it pleasant?
• Are residents clean, well groomed, and dressed appropriately for the season and time of day? Are they involved in activities?
• Are staff friendly, helpful, and respectful?
• Talk to staff, residents, and families to find out what they think of the facility.
• Ask to see the area where physical therapy and other rehabilitation services are provided.
• Is the nursing home experienced with special needs-for example, problems with swallowing?
• Who provides the medical care?
• Which hospital(s) does the nursing home use?

A Guide to Choosing a Nursing Home
Has sections on gathering information, visiting nursing homes, and residents' rights and quality of life. Includes phone lists for State ombudsmen, State survey agencies, and insurance counseling. 47 pages. Free.

Medicare: 1-800-633-4227
Web site: http://www.medicare.gov/Publications/Search/SearchCriteria.asp?version=default&browser=IE%7C6%7CWinXP&Language=English&pagelist=Home&comingFrom=13

Resource Directory for Older People
The Administration on Aging and National Institute on Aging offers lists of hundreds of organizations, names, and phone numbers, including State agencies on aging and State long-term care ombudsmen programs. Not available in print.

Web site: http://www.aoa.gov/

American Assocation of Homes and Services for the Aging
Offers a series of pamphlets on nursing homes, assisted living, continuing care retirement communities, community services, housing options for older people, and understanding Medicare managed care. Free.

Telephone: 1-800-675-9253
Web site: http://www.aahsa.org

How to Choose a Home Care Provider
Explains who provides what kind of care, the various services offered, who pays for services. Has billing and payment information. Lists patients' rights, accrediting agencies, and State resources and information. Free.

National Association for Home Care
Telephone: 202-547-7424
Web site: http://www.nahc.org

Myths and Realities of Living in a Nursing Home, How to Pay for Nursing Home Care, What Consumers Need to Know About Private Long-Term Care, and Circle of Care.
A series of six pamphlets on selecting and paying for long-term care. Free. For more than one copy: 1-800-321-0343 (packets of 25).

The American Health Care Association
1201 L St., NW
Washington, DC 20005-4014
(202) 842-4444
Web site: http://www.ahca.org/info/informat.htm

Nursing Home Life: A Guide for Residents and Families
Includes first-hand accounts from residents and family members. Topics include adjusting to nursing home life; services and staff; getting what you need; and dealing with poor care. Has useful appendices and resource lists. 44 pages. Free.

The American Association of Retired Persons
601 E. St., N.W.
Washington, DC 20049
1-800-424-3410
Web site: http://www.aarp.org

Choosing a Nursing Home and All About Home Health
Available on-line from Health Pages.

Web sites:
http://www.thehealthpages.com/articles/ar-nrshm.html
http://www.thehealthpages.com/articles/ar-homeh.html

healthfinder
Provides a gateway to reliable consumer health information from the Federal Government and other organizations.

Web site: http://www.healthfinder.gov

Medically reviewed by Celia E. Dominguez M.D. WebMD, January 2008.

Agency for Healthcare Research and Quality. AHCPR Publication #99-0012: Choosing Long-Term Care. Your Guide to Choosing Quality Health Care. Last updated July 2001. (Online) http://www.ahrq.gov/consumer/qntascii/qntltc.htm