Fact Sheet: Out-of-Home Care Options

Considering a move to an out-of-home residential facility can be a heart-wrenching experience. Many caregivers continue providing care far beyond their physical and emotional capacity before they even consider long-term placement for their impaired relative. Yet moving to a residential facility may become the most realistic way to provide the best care, and the only way to relieve a caregiver's overwhelming burden.

The following issues may signal the need for out-of-home residential care:

• Around-the-clock care (or supervision) is needed.
• Your health as caregiver is adversely affected.
• Your relative has violent outbursts or erratic behavior dangerous to self or others.
• Your relative wanders away from home.
• Your relative cannot carry out basic activities of daily living such as eating, toileting, bathing, etc.
• Your relative receives no stimulation or needed rehabilitative therapies at home.
• Caregiver suffers from exhaustion, stress, fear, isolation.
  

In some cases, a meeting can be planned with close family and friends to discuss finding the right facility, feelings about the transition, and visitation schedules. It may help to speak to a counselor or support group to help alleviate feelings of guilt or shame often associated with putting a loved one in a nursing home. In any case, the caregiver should take time out to take an objective look at the situation.

Selecting the Right Type of Facility
Planning ahead can help circumvent the confusion and trauma of a sudden move as well as the emotional ordeal for both patient and caregiver. A thoughtful comparison of available options will help all involved gain insight into finding the most appropriate setting and level of care for the impaired individual. The process may also help family members regain a sense of control over a previously unmanageable situation.

Selecting a facility depends on the level of care needed, cost, functional capability of the individual and the amount of behavioral disturbance exhibited. Types of facility include:

• Assisted Living Facilities (ALFs) maximize independence by providing apartment-style living with services designed for older persons. These facilities are suitable for relatively independent persons or in cases where the well spouse and the impaired spouse wish to continue living together. The private accommodations generally include individual kitchen facilities, in addition to meal services provided by the facility. ALFs also provide 24-hour security, transportation, and emergency call systems for each resident's unit. Recreation and social activities also may be available. Some facilities offer personal care assistance such as help with bathing, dressing, eating, or using the toilet.Assisted living facilities rarely offer skilled nursing care. There are no federal regulations on the operation of ALFs, so it is important to ascertain what services are available at a particular facility. ALFs tend to be costly (about $1,000 to $3,000 per month).
• Residential Care Facility (RCF) often referred to as "board and care homes," for individuals who are unable to live alone but do not warrant skilled nursing services. RCFs provide assistance with personal hygiene and grooming and bedside care during periods of minor or temporary illness. RCFs also provide some recreational and social activities. Some residential care facilities specialize in care of the older adults, persons with Alzheimer's disease, younger cognitively impaired or disabled individuals. In California RCFs which care for elderly persons with dementia are required to provide some means of protecting residents who could wander off the premises. Some facilities are now allowed to provide secured perimeters (e.g., locked exits).
  The family should check each facility and talk with the owner. RFCs generally have lower monthly costs than skilled nursing facilities. They are not, however, reimbursed by Medicaid (Medi-Cal in California), since they are not medical facilities. In some cases arrangements can be made to use monthly SSI payments as reimbursement to the facility.
• Intermediate Care Facility (ICF)—This type of facility accepts individuals who are relatively independent but who may need assistance with bathing, dressing, getting out of bed, etc. ICFs provide some nursing care but do not offer 24-hour skilled nursing services. ICFs are not licensed to accept incontinent or nonambulatory patients. Because they provide lower amounts of skilled nursing services, ICFs are usually lower in cost than skilled nursing facilities. There are very few ICFs in California.
• Skilled Nursing Facility (SNF)—Also called nursing homes, convalescent hospitals and rest homes. SNFs provide continuous nursing services under a registered nurse or licensed vocational nurse. SNFs are equipped to provide more extensive care needs, such as administering injections, monitoring blood pressure, and caring for patients on ventilators, or those requiring intravenous feeding. However, many residents in skilled nursing facilities may be receiving only "custodial" care such as help with bathing, eating, getting in and out of bed, and using the toilet. In addition, SNFs must provide recreational activities for residents. SNFs may also provide rehabilitative services, such as physical, occupational, or speech therapies. SNF care can be very costly (an average of $40,000 per year).
  Currently, neither Medicare nor Medi-Gap supplemental insurance covers the cost of custodial care in a nursing home. Medicare will help pay for up to 100 days of medically-necessary SNF care for older persons and other qualified individuals. As of 1996, Medicare pays 100% for days 1 to 20; days 21-100 require a $92 copayment per day. (For information about Medicaid, see Financing Residential Care, next page.)
• Special Care Units for individuals with Alzheimer's disease/dementia may be specialized SNFs or designated portions of existing SNFs. Special services may include secured grounds, trained staff, special architectural design, and therapeutic activities. Because federal guidelines have not yet been established, caution should be exercised in evaluating what specific benefits a facility provides for its dementia residents. Special care units are typically costly, and are not certified for Medicaid.
• Psychiatric Locked Facilities—These facilities provide 24-hour nursing services for those with problems such as wandering or violent, disruptive behaviors. Unlike SNFs, locked facilities have doors that lock from the inside and walking areas that are secured. Although locked facilities or wards are often designed for treatment of younger psychiatric patients, a dementia patient who wanders or who exhibits difficult behaviors may be accepted. Where voluntary consent is not possible, an LPS conservatorship must be obtained for placement. Contact your local county mental health association for further information. State-administered psychiatric facilities may be funded fully or partially with public monies and are subject to the availability of funds from the patient's county of residence.
• A variety of rehabilitation-oriented residential placements are also available for head-injury survivors. Options are often limited, depending on geographic location and the patient's ability to pay. Less restrictive options include privately operated group homes and half-way houses. Transitional living programs and special wings at hospitals and SNFs may also provide sub-acute rehabilitation for periods of 6-24 months for individuals requiring extended rehabilitation therapies, behavior modification, and independent living skills. Admission criteria depend on the needs and limitations of the individual. Life-long living and coma management programs also exist in some hospitals or SNFs. The costs of these residential placements vary greatly.
  See the RECOMMENDED READING section for the guide, Questions to Ask at a Post-Acute Rehabilitation Facility.
  

Evaluating Individual Care Facilities
A number of publications are available which provide check lists to help families and caregivers evaluate the physical environment, staffing patterns, activities and services of various types of residential facilities. These include inspection of safety procedures, visiting policies, cleanliness, attentiveness of nursing staff, quality of food, availability of pharmaceuticals and laundry services, etc.

It is important to remember that persons with cognitive deficits may also require special care, services, and activities. For example, do staff have any special training for handling brain-impairing conditions? Are facilities secured so a patient cannot wander away? Is assistance offered at meal time for those unable to feed themselves? Are any special recreational activities offered? Is therapeutic rehabilitation available to those who need it? How are problem behaviors handled? Are physical or chemical restraints used?

Lists of facilities, background information, advocacy, and investigation of problems are available from local Ombudsman offices statewide and across the country. Help in finding a facility also may be available from a hospital discharge planner or social worker. In addition, see the RECOMMENDED READINGS section for publications offering more extensive guidelines for evaluating facilities.

Financing Residential Care
Coverage of residential care services by most private health insurance companies tends to be quite limited. Although a number of insurance carriers offer nursing home coverage as a benefit, many restrictions still apply. Long-term care policies should be carefully scrutinized by the potential buyer for scope of coverage, lifetime benefits, exclusions, and cost of premiums.

Due to the high costs and limited insurance possibilities, families may find residential care beyond their ability to pay. However, there are some options for financial help, depending on the person's economic circumstances and the level of care required.

The primary financing option for most individuals in skilled nursing homes, as well as some rehabilitation facilities, is the Medicaid program (Medi-Cal in California). Medicaid will only pay for care which is deemed medically necessary. For this, families must meet income eligibility requirements and may have to "spend down" their assets in accordance with federal and state guidelines to qualify for this public benefit. Provisions are also available to protect the assets of the well spouse. It is prudent to seek the advice of a qualified attorney to make sure that correct procedures are followed for Medicaid eligibility. Caregivers should be aware that once eligible, Medicaid patients often must wait for the availability of a limited number of designated Medicaid beds.

If care is sought in a facility not covered by Medicaid (e.g, an assisted living facility or residential board and care), older adults who are homeowners may consider a reverse annuity mortgage. This can be used to convert home equity into a monthly cash stipend to pay for long-term care. These types of loans vary. In some cases, at least one spouse must remain in the home. However, loans may be available to provide monthly cash for as long as the borrower lives, even if the borrower must move away from the property. Annuity arrangements should be made after consulting with an attorney who specializes in estate planning and public benefits. As a precaution, all lenders should be checked with the Better Business Bureau or other local consumer groups.

Recommended Readings
If You Think You Need a Nursing Home: A Placement Packet, CANHR, 1996, 1610 Bush St., San Francisco, CA 94109.

Nursing Homes: Getting Good Care There, Sarah Greene Burger et al., 1996, Impact Publishers, P.O. Box 1094, San Luis Obispo, CA 93401.

How to Achieve Quality of Life and Care in a Nursing Home, Elizabeth Yeh, 1996, Rossenwasser Publishing Company, 7950 N. Stadium Dr., #229, Houston, TX 77030, (800) 245-5137.

Long-Term Care: A Dollar & Sense Guide, 1993, United Seniors Health Cooperative, 1331 H St., NW, Suite 500, Washington, DC 2005-4706.

Questions to Ask at a Post-Acute Rehabilitation Program, Barry Platt, 1995. Available from Family Caregiver Alliance. $10 each.

Home Away From Home, A Consumer's Guide to Board & Care Homes and Assisted Living Facilities, American Association of Retired Persons (AARP), 1996. Available from AARP, Consumer Affairs Section, Program Coordination and Development Dept., 601 E. St., NW, Washington, DC 20049.

Credits
California Advocates for Nursing Home Reform, 1996.

Assisted Living Facilities of America, 1996, Assisted Living brochure.

Secure Facilities for Alzheimer's Patients Authorized, CALC Notes, March 1996.

Campbell, J. B., 1996, Special Care Units: To Regulate or Not…, Elder Law Forum, January/February 1996.

Resources
Assisted Living Facilities Association of America
10300 Eaton Place, Suite 400
Fairfax, VA 22030
(703) 691-8100

American Association of Homes and Services for the Aging
901 E. St., NW, Suite 500
Washington, DC 20004
(202) 783-2242

National Citizens Coalition for Nursing Home Reform
1424 16th St., NW, Suite 202
Washington, DC 20036
(202) 332-2275

Health Insurance Association of America
555 13th St., NW, Suite 600 E
Washington, DC 20004
(202) 824-1600
(800) 942-4242 (National Insurance Consumer Helpline)

Brown Schools
National Information and Referral Service
(Head Injury Rehabilitation)
P.O. Box 4008
Austin, TX 78765
(800) 531-5305

California Resources

California State Long-Term Care
Ombudsman Hotline
(800) 231-4024

California Advocates for Nursing Home Reform (CANHR)
1610 Bush St.
San Francisco, CA 94109
(415) 474-5171

Reviewed by California Advocates for Nursing Home Reform (CANHR). Prepared by Family Caregiver Alliance in cooperation with the State of California's Caregiver Resource Centers, a statewide system of resource centers serving families and caregivers of brain-impaired adults. Funded by the California Department of Mental Health.
Reprinted October 1996. ©All rights reserved.