Guide to Long-Term Care

Serving People Through the Continuum of Long-Term Care

A Guide to Long-Term Care

What is long-term care?
Who needs long-term care services?
What types of care are available?
Who pays for long-term care?
What standards apply to long-term care facilities?
What role do state agencies play?
What rights do nursing facility residents have?
Facts about long-term care
Glossary of terms
Other useful contact information

WHAT IS LONG-TERM CARE?

When we talk about long-term care, most people think of custodial care for the elderly in a nursing home or skilled nursing facility. But long-term care as we know it today includes a wide variety of settings and services which are available to meet people's special needs. For example, someone recovering from surgery may stay in a sub-acute care facility instead of a hospital. A stroke or accident victim can receive nursing care and speech, physical and occupational therapy at a skilled nursing facility. And someone who requires assistance with activities of daily living such as dressing and bathing, but doesn't need 24-hour nursing, may choose a residential care facility.

Other options include respite care and adult day health care to ease the burden on family caregivers, special Alzheimer's programs, services for persons with developmental disabilities, mental health care, and home and community based care.

WHO NEEDS LONG-TERM CARE SERVICES?

Two out of every five Americans will need long-term care at some point in their lives.

Seniors are the fastest growing segment of population and the heaviest users of long-term health care services. In California, the elderly population (age 65+) is expected to grow more than twice as fast as the total population. The elderly age group will have an average increase of 112% during the period 1990-2020.

More than any other socioeconomic group, women are disproportionately affected by long-term care. The reason behind this lies in the fact that women live longer than men and thus, are more likely to develop the functional ailments that require long-term care services. Two-thirds of residents in long-term care facilities are women.

Several other factors contribute to the need for long-term care. Families are geographically scattered. Time, travel expenses and other responsibilities make it nearly impossible to provide the care older family members need. In addition, the primary caregivers in most families are women, and today more women work outside the home.

Although most long-term care services are used by the elderly; young adults, children, and even infants use long-term care services due to chronic illness, disability or accident.

WHAT TYPES OF LONG-TERM CARE SERVICES ARE AVAILABLE?

Facility-based care

Assisted Living/Residential-care facilities for the elderly (RCFEs) - Assisted living facilities provide personal care and safe housing for people who may need supervision for medication and assistance with daily living but who do not require 24-hour nursing care.

Regulation – Licensed by Dept. of Social Services, Community Care Licensing Division.
Payment – Funded primarily though private payments. Nearly 30% of RCFE residents rely on SSI/SSP non-medical out-of-home grants.

Continuing Care Retirement Communities (CCRCs) - Includes three levels of care: independent, assisted living and nursing care. CCRCs require an entrance fee paid by the applicant upon admission and includes services for more than one year and up to the lifetime of the resident.

Regulation – Licensed by Dept. of Social Services, Continuing Care Contracts Branch. Skilled nursing level licensed by the Dept. of Health Services.
Payment – Private Payment

Intermediate-care facilities (ICFs)- These facilities provide room and board along with regular medical, nursing, social and rehabilitative services for people not capable of full independent living.

Regulation – Licensed and Medi-Cal and/or Medicare certified by DHS.
Payment – Funded primarily by Medi-Cal. Some funding through Medicare and private payment.

Intermediate-care facilities for the developmentally disabled (ICF/DDs) - Known at the federal level as ICFs/MR (mental retardation), these facilities provide services for people of all ages with mental retardation and/or developmental disabilities. ICF/DDs have 16 or more beds; ICF/DD-H (habilitative) and -Ns (nursing) have 15 or fewer beds and average six beds in a home setting.

Regulation – Licensed and Medi-Cal certified by DHS. The Department of Developmental Services and Regional Centers are responsible for placement and quality assurance.
Payment – Nearly 100% Medi-Cal.

Institutes for mental health (SNF/STPs) - Designated in California as "special treatment programs," these facilities provide extended treatment periods for people of all ages with chronic mental-health problems; many of the clients are younger than 65. Specialized staff serve clients in a secured environment.

Regulation – Licensed and Medi-Cal certified by DHS. Local mental health departments are responsible for placement and program content.
Payment – A combination of state and county funding.

Nursing facilities (NFs) - Sometimes called skilled-nursing facilities, nursing homes or convalescent hospitals, these facilities provide comprehensive nursing care for chronically ill or short-term residents of all ages, along with rehabilitation and specialized medical programs.

Regulation – Licensed and Medi-Cal and/or Medicare certified by the California Department of Health Services (DHS).
Payment – Funded primarily by Medi-Cal. Some funding provided through Medicare, managed care and private payment.

Subacute-care facilities - Specialized units often in a distinct part of a nursing facility, subacute-care facilities focus on intensive rehabilitation, complex wound care and post-surgical recovery for residents of all ages who no longer need the level of care found in a hospital.

Regulation – Licensed and Medi-Cal and/or Medicare certified by DHS.
Payment – Funded primarily by Medi-Cal. Some funding through Medicare, managed care and private payment.

Home and Community-Based Care

Adult day health care - Adult day health care that provides some medical care, plus physical, occupational and speech therapy.

Regulation – Licensed and Medi-Cal certified by DHS. These programs also receive oversight from the Department of Aging.
Payment – Primarily Medi-Cal.

Community care facilities - Community care facilities provide 24-hour non-medical residential care to children and adults with developmental disabilities.

Regulation - Licensed by Dept of Social Services, Community Care Licensing Division.
Payment - Funding through home and community-based Medi-Cal waiver program. Regional Center funding for the developmentally disabled.

Congregate housing - Housing with a common living area and non-medical support services to meet basic needs of older people.

Regulation – Dept of Social Services, Community Care Licensing Division.
Payment – Grants provided through the Federal Government (Housing & Urban Development). Some funding through SSI/SSP for those eligible.

Home health care -Home health care provides medically-oriented care for acute or chronic illness in the patient's home, usually as a follow-up to acute or other facility discharge.

Regulation – Licensed and Medicare and Medi-Cal certified by DHS.
Payment – Funded primarily through Medicare, with limited coverage through Medi-Cal, private insurance and private payments.

Hospice - Hospice provides care and support for terminally ill people and their families. Can be provided in a facility setting or at home.

Regulation –Hospice license required for in-home care. Dual licence required in a facility setting. Medicare certification required for Medicare or Medi-Cal payments.
Payment– Funded through Medicare, Medi-Cal, private insurance and private payments.

Personal care services - Personal care services are provided for people who need assistance with daily living but do not require nursing.

Regulation – No separate license required.
Payment – Primarily funded through In-Home Supportive Services for those eligible. Some Medi-Cal, for those eligible, and private payments.

Respite care - Respite care provides short term inpatient or home care delivered to an elderly person as a substitute for their regular caregiver.

Regulation – No separate license required of existing licensed providers.
Payment – Funding through home and community based waiver and the Department of Aging.

WHO PAYS FOR LONG-TERM CARE?

As America ages, the need to address how we pay for long-term care becomes increasingly urgent. A recent study indicates that one in five Americans age 50 or over may need long-term care sometime within the next 12 months. Most are ill-equipped to deal with the enormous cost – just one in four Americans can afford the cost of long-term care for a year.

Although Medicare reform is a national priority, it won't help the vast majority of American's who require facility-based long-term care. Medicare coverage of nursing facility care is very limited – only covering the first 20 days of care in most cases.

Medicaid (known as Medi-Cal in California)
Nearly two-thirds of all nursing facility residents rely on Medi-Cal. The proportion is even higher at facilities caring for people with developmental disabilities, where nearly 100 percent of clients are Medi-Cal beneficiaries. Unfortunately, seniors must deplete their life savings and impoverish themselves in order to become eligible for Medicaid.

The objective of the Medicaid program is to provide essential medical care and services to preserve health, alleviate sickness and mitigate handicapping conditions for individuals or families receiving public assistance, or whose income is not sufficient to meet their individual needs. The covered services are generally recognized as standard medical services required in the treatment or prevention of diseases, disability, infirmity or impairment.

States design their own programs within broad federal guidelines. Thus, Medicaid programs vary from state to state.

Medicare
Medicare, administered by the U.S. Department of Health and Human Services (HHS), is a federal insurance program for (1) people age 65 and over: (2) people disabled for at least two years; or (3) people suffering from chronic kidney disease. Nursing facility coverage under Medicare is very limited — the average length of stay paid for by Medicare is 26 days.

Nationally, only about 4 percent of nursing facility patient days are supported by Medicare. California slightly exceeds this national statistic, having approximately 8 percent of its long term care population supported by Medicare.

Long Term Care Insurance
Long term care insurance can protect an individual's assets and provide peace of mind. A good long- term care insurance policy will cover all levels of care, especially personal care, and all settings, including facility care, community adult day care, assisted living facilities, and nursing facilities.

The cost of a long term care insurance policy primarily depends on the age of the policy holder when purchased. The annual premium for a low-option policy for a person at age 50 is about $400. This same policy for a 65-year-old person is about $1,100 per year; for a person age 79, the policy would cost more than $4,300.

Recognizing the growing need for better insurance coverage, the State of California formed the Partnership for Long-Term Care, an innovative program offered by the Department of Health Services in cooperation with a select number of private insurance companies. The insurance companies which participate in the program have agreed to offer high quality policies that meet stringent requirements set by the Partnership and the State of California. For more information, call toll-free (800) 434-0222.

Supplemental Security Income/State Supplementary Programs (SSI/SSP)
SSI is a federal cash benefit program for those over 65 years of age and the blind and disabled. SSI is the only government source of payment for RCFE/assisted living residents, as Medi-Cal does not pay for the RCFE setting. SSI is supplemented by the State of California to assist in paying for RCFE services. The SSI grant may provide the total monthly income or it may supplement a low income. In California, approximately 30 percent of the RCFE residents are recipients of SSI.

Third Party Payors
This category of financing includes individual insurance plans other than Medicare or Medi-Cal; Veteran's Benefits; Municipal Assistance benefits; and long term care insurance policies. These sources account for about 9 percent of long term care payment.

WHAT STANDARDS APPLY TO LONG-TERM CARE?

California's oversight of long-term care facilities is the most rigorous in the nation and the most comprehensive for any category of provider in the state. The Department of Health Services, the Department of Social Services, the Department of Mental Health and the Department of Developmental Services each plays a role in licensing and regulating care providers.

Providers must meet state licensure standards, and in the skilled setting, are also governed by a stringent set of federal requirements. In addition, several other federal, state and local agencies – including the federal Health Care Financing Administration, state departments of Aging, Justice and Consumer Affairs and the Office of the State Fire Marshal – also review facility services in California.

Facilities must demonstrate compliance with hundreds of very detailed regulations. To ensure compliance with these standards, California state surveyors annually conduct thorough inspections of each facility.

WHAT ROLE DO STATE AGENCIES PLAY?

State agencies play a significant role in the oversight of long-term care. The state Health & Human Services Agency has primary responsibility over long-term care providers. The various Departments under Health & Human Services have specific responsibilities:

The Department of Health Services is responsible for licensing health facilities, home health agencies and hospices, and for general oversight of the services they provide.

The Department of Social Services manages California's integrated social service and income maintenance programs. The Department's Community Care Licensing Division licenses residential care facilities, and its Adult and Family Services Division is responsible for monitoring elder abuse.

The Department of Developmental Services is responsible for services to Californians with developmental disabilities such as mental retardation, cerebral palsy, epilepsy and autism.

The Department of Mental Health sets overall policy for the delivery of mental health services; establishes priorities, standards and procedures within which mental health services operate; assists in planning programs; monitors, reviews and evaluates the actual operation of services; and oversees any changes brought about by the evaluation and review process.

The Department of Aging serves as the focus for community-based services to California's seniors. Its mission is to provide leadership in addressing issues related to aging Californians, and in developing community-based systems of long-term care services throughout the state.

The Ombudsman Program advocates for the rights of all residents of 24-hour long-term care facilities and adult day health care centers in the state.

In addition to the Health & Human Services agencies, other state and local agencies, such as State and County Fire Marshals, Cal-OSHA, and the Department of Consumer Affairs also have roles in the oversight of long-term care in California.

Nursing facilities are subject to an extensive set of standards prescribed in state licensing law and federal Medicare/Medicaid certification requirements. State inspectors spend hundreds of hours each year enforcing these regulations in their annual compliance visits to each of California's long-term care facilities.

Assisted living/RCFE providers are surveyed annually by the Dept. of Social Services.

Other long-term care programs for the aged and disabled have varying degrees of oversight from state and local agencies. As the role of the other programs grow and develop, public concern and government oversight is also expanding. Although regulation and enforcement activities will always be necessary, California needs a less polarized, more collaborative approach to quality that focuses on prevention, quality improvement and outcomes.

WHAT RIGHTS DO RESIDENTS HAVE?

Observance of and adherence to the bill of residents' rights are the guiding forces in the daily operations of today's long term care facilities. The statement of patient's rights is a lengthy document designed to promote and protect the rights of individuals in a facility. These are just a few of the many areas addressed by the statement of rights:

Residents have the right to:

participate to the fullest extent possible in their own care plans;
manage their own finances or to have the responsibility given to a designated guardian (i.e. family or friend);
privacy, both in their rooms and during visits from family/friends;
safe, clean living conditions;
participate in activities both in and out of the facility;
retain and exercise all constitutional, civil and legal rights to which the patient is entitled by law;
maintain religious practices; and
prepare advance directives for health care.

For a complete list of nursing facility resident rights, go to http://www.dhs.cahwnet.gov/lnc/rights/factst4.htm.

Upon admission, long-term care providers are required to give residents and/or their guardians a copy of the statement of patient rights. In addition, facilities must give a copy to the resident's next of kin, all facility staff and must post these rights prominently in a public place within the facility.

FACTS ABOUT LONG-TERM CARE

There are approximately 1,400 licensed nursing facilities in California. These facilities care for more than 250,000 Californians each year.
There are approximately 6,000 assisted living/residential care facilities in California.
There are approximately 775 ICF/DD-H homes and approximately 300 ICF/DD-N homes 771 in California.
There are approximately 44 intermediate care facilities in California.
The average nursing facility costs range between $101 and $120 per day ($37,000 - $44,000 per year).
Assisted living rates range from $1,000 to $3,000 per month, depending on such variables as building design and amenities.
Two-thirds of California's nursing home residents rely on Medi-Cal to pay for their care in a nursing facility. The average Medi-Cal reimbursement rate is $115 per day.
Almost 100 percent of clients who reside in homes for the developmentally disabled rely on Medi-Cal to pay for their care.
Medi-Cal does not pay for assisted living. About 90 percent of assisted living services are paid for with private funds.
The average length of stay in today's nursing facility is less than two months for over 70 percent of the resident population; with fewer than 13 percent of all residents remaining in the facility for one year or more.
The average length of stay in an assisted living facility is 3.3 years.
Three out of four long-term care residents are women.
Approximately 85 percent of long-term care residents in California are age 65 or older.
On average, nursing facility residents require some level of assistance with 3 or more of the activities of daily living, which include bathing, dressing, transferring, toileting and eating. Assisted living residents need help with on average 1.6 activities of daily living.
California is projected to be one of the fastest growing states in the nation in total population. In California, the elderly population (age 65+) is expected to grow more than twice as fast as the total population. The elderly age group will have an average increase of 112% during the period 1990-2020.

GLOSSARY OF TERMS

Activities of Daily Living (ADLs) – The physical functions necessary for independent living. These usually include bathing, dressing, using the toilet, eating and moving about (transferring).

Acute Hospital - A hospital which provides care for persons who have a crisis, intense or severe illness or condition which requires urgent restorative care.

Area Agencies on Aging (AAA) – Local government agencies which grant or contract with public and private organizations to provide services for older persons within their area.

Assisted Living/Residential Care Facilities for the Elderly (RCFE) – Personal care and safe housing for people who require supervision for medication and assistance with daily living, but who do not require 24-hour nursing care.

Chronic – A lasting, lingering or prolonged illness.

Copayments – Copayments are those payments made by an individual at the time that he or she uses health care services. Copayments are generally a set amount depending upon the specific service received.

Custodial Care – Care is considered custodial when it is primarily for the purpose of meeting personal needs and could be provided by persons without professional skills or training.

Developmental Disability (DD) – Disability which originates before age 18; can be expected to continue indefinitely; constitutes a substantial handicap to the disabled's ability to function normally; and is attributable to mental retardation, cerebral palsy, epilepsy, autism, or any other condition closely related to mental retardation which results in similar impairment of general intellectual functioning or adaptive behavior.

Durable Power of Attorney for Health Care – This legal document authorizes the person given the power to make decisions regarding the person's medical treatment only when the person giving the power becomes incompetent.

Home Health Agency (HHA) – A home health agency is a public or private agency that specializes in giving skilled nursing services, home health aides, and other therapeutic services, such as physical therapy, in the home.

Hospice – A hospice is a public agency or private organization that primarily provides pain relief, symptom management, and supportive services to terminally ill people and their families in the home.

Intermediate Care Facility (ICF) – An ICF provides health related care and services to individuals who do not require the degree of care or treatment given in a hospital or skilled nursing facility, but who (because of their mental or physical condition) require care and services which is greater than custodial care and can only be provided in an institutional setting.

Institutes for Mental Disease (IMDs) – Provide supplemental special programs for mentally disordered individuals in a locked and/or secured skilled nursing facility setting.

Long-Term Care Insurance – A policy designed to help alleviate some of the costs associated with long term care needs. Often, benefits are paid in the form of a fixed dollar amount (per day or per visit) for covered LTC expenses.

Ombudsman – Individual designated by a state or a substate unit responsible for investigating and resolving complaints made by or for older people in long term care facilities. An ombudsman is also responsible for monitoring federal and state policies that relate to long term care facilities, for providing information to the public about the problems of older people in facilities, and for training volunteers to help in the ombudsmen program. The ombudsman program is authorized by Title III of the Older Americans Act.

Managed Care – Medical care delivery system, such as HMO or PPO, where someone "manages" health care services a beneficiary receives; each plan has its own group of hospitals, doctors and other health care providers called a "network"; usually promote preventive health care; may have to pay a fixed monthly premium and a co-payment each time a service is used.

Medicaid (Medi-Cal in California) – The state medical assistance program which provides essential medical care and services for individuals and families receiving public assistance, or whose income is not sufficient to meet their individual needs. Sixty-five percent of residents in skilled nursing facilities rely on Medicaid.

Medicare – The nation's largest health insurance program, Medicare covers 37 million Americans. Medicare provides insurance to people who are 65 years old; people who are disabled; and people with permanent kidney failure. Medicare provides only limited benefits for skilled care, and under specific guidelines, for nursing home and home health care. Only 8 percent of individuals in skilled nursing facilities rely on Medicare.

Medicare Supplementary Insurance – This insurance pays the 20% of the Medicare approved amount of which Medicare pays 80%.

Medigap Insurance – Medigap insurance are private insurance products that provide insurance protection for the costs of hospital services that are rendered to a Medicare beneficiary that exceed the amount Medicare will pay for the hospital services.

Occupational Therapy – Activities designed to improve the useful functioning of physically and/or mentally disabled persons.

Personal Care – Involves services rendered by a nurse's aide, dietician or other health professional. These services include assistance in walking, getting out of bed, bathing, toileting, dressing, eating and preparing special diets.

Physical Therapy – Services provided by specially trained and licensed physical therapists in order to relieve pain, restore maximum function, and prevent disability, injury or loss of a body part.

Respite – The in-home care of a chronically ill beneficiary intended to give the care-giver a rest. Can also be provided in a hospice or nursing home (as with hospice respite care).

Skilled Nursing Care – Care which can only be provided by or under the supervision or licensed nursing personnel. Skilled rehabilitation care must be provided or supervised by licensed therapy personnel. All care is under the general direction of a physician and necessary on a daily basis. Therapy that is needed only occasionally, such as twice a week, or where the skilled services that are needed do not require inpatient care, do not qualify as skilled level of care.

Skilled Nursing Facility (SNF) – Provide 24-hour nursing care for chronically-ill or short-term rehabilitative residents of all ages.

Social Security – A national insurance program that provides income to workers when they retire or are disabled and to dependent survivors when a worker dies. Retirement payments are based on worker's earnings during employment.

Speech Therapy – The study, examination, and treatment of defects and diseases of the voice, speech, spoken and written language.

Sub-Acute Care Facilities – Specialized units often in a distinct part of a nursing facility. Provide intensive rehabilitation, complex wound care, and post-surgical recovery for persons of all ages who no longer need the level of care found in a hospital.

Supplemental Security Income (SSI) – A federal program that pays monthly checks to people in need who are 65 years or older and to people in need at any age who are blind and disabled. Eligibility is based on income and assets.

OTHER USEFUL CONTACT INFORMATION

Associations
American Health Care Association
1201 L St, NW
Washington DC 20005
(202) 842-4444
www.ahca.org

American Society on Aging
833 Market St, Ste 511
San Francisco, CA 94103
(415) 974-9600
www.asaging.org

California Association for Health Services at Home
723 S St
Sacramento, CA 95814
(916) 443-8055
www.cahsah.org

California Association of Adult Day Services
921 11th St, Ste 701
Sacramento, CA 95814
(916) 552-7400
www.caads.org

California Association of Health Facilities
2201 K Street
Sacramento, CA 95816
(916) 441-6400
www.cahf.org

California Association of Homes and Services for the Aging
7311 Greenhaven Dr, Ste 175
Sacramento, CA 95831
(916) 392-5111
www.aging.org

California Association of Residential Care Homes
2380 Warren Road
Walnut Creek, CA 94595
(925) 937-3046

California Center for Assisted Living
2201 K Street
Sacramento, CA 95816
(916) 441-6400
www.ca-assistedliving.org

National Center for Assisted Living
1201 L St, NW
Washington DC 20005
(800) 434-0222; (202) 842-4444
www.ncal.org

State Government

California Department of Aging
16 K Street
Sacramento, CA 95814
(916) 322-3887
- Office of State Ombudsman
(916) 323-6681
www.aging.state.ca.us

California Department of Health Services
P.O. Box 942732
Sacramento, CA 94234-7320
(916) 445-4171
www.dhs.ca.gov

California Department of Social Services
744 P Street
Sacramento, CA 95814
(916) 657-3661
www.dss.cahwnet.gov

California State Capitol
Governor's Office
(916) 445-2841
www.governor.ca.gov

State Government Information Line
(916) 322-9900
www.ca.gov

Federal Government

White House
(202) 456-1414
www.whitehouse.gov

Insurance Resources

California Partnership for Long Term Care
714 P Street, Room 616
Sacramento, CA 95814
(800) 434-0888
www.dhs.ca.gov/cpltc

Health Insurance Counseling and Advocacy Program
(800) 434-0222
www.aging.state.ca.us/html/programs/hicap.htm

Other Resources

Area Agencies on Aging (www.cahf.org/public/consumer/areaagcy.php)
The California Department of Aging contracts with a statewide network of 33 Area Agencies on Aging (AAAs) which are responsible for the planning and delivery of community services for older persons and persons with disabilities.
(800) 510-2020

Eldercare Locator (www.eldercare.gov/)
A nationwide toll-free information and referral service
(800) 677-1116

Regional Centers for Persons With Developmental Disabilities (www.cahf.org/public/consumer/ddregctr.php)
Regional centers are responsible for coordination of services and case management for persons with developmental disabilities, as well as diagnosis and assessment, preventative services to parents and persons at risk of having developmental disabilities, individual program planning, advocacy, monitoring and evaluation.

Statewide Ombudsman (www.cahf.org/public/consumer/calombud.php)
Each county has a Long Term Care Ombudsman program, whose goal is to advocate for the rights of all residents of long-term care facilities and adult day health-care centers in the state.
(800) 231-4024

California Association of Health Facilities | 2201 K St., PO Box 537004
Sacramento, CA 95853 | 916.441.6400 | Fax 916.441.6441