Fact Sheet: Assisted Living and Supportive Housing

Between Home and Nursing Home

Assisted living and other forms of supportive housing are specifically designed for those who need extra help in their day-to-day lives but who do not require the 24-hour skilled nursing care found in traditional nursing homes.

Fortunately, the trend over the past two decades has been to create a wider variety of living options that are much more homelike than the institutional facilities of the past. This fact sheet provides an overview of these options and guidance in finding information and referrals. The goal is to find a facility that is comfortable, safe, appropriate and affordable for your loved one.

Moving out of one's home and into a residential care facility is an enormous change in lifestyle and can cause great stress. Whenever possible, the decision should be discussed fully with the affected individual. In addition, family members, a social worker, case manager, hospital discharge planner, financial planner and spiritual advisor can be helpful in making sure that the individuals' needs will be met and that the family feels comfortable with the move.

What's in a Name?
Supportive housing options vary widely in terms of size, cost, services, and facilities. The terms used to describe these options vary from state to state. The following table outlines the most common terms and the differences among them:

This list is only a general guide. As you begin to look at housing options, you will learn the names used in your community. The focus of this fact sheet is on assisted living facilities (ALFs).

State Regulation
The definition of the term assisted living varies from state to state. One of the reasons so many terms exist for similar facilities is that each state has its own licensing requirements and regulations to govern these facilities to ensure quality care.

Services
At a minimum, ALFs provide 24-hour staff and two to three meals per day in a common dining area. Other typical services include:

• Housekeeping and laundry services
• Medication reminders and/or help with medications
• Help with "Activities of Daily Living" (ADLs) including bathing, toileting, dressing, and eating
• Transportation
• Security
• Health monitoring
• Care management
• Activities and recreation

Choosing a Facility
The following suggestions can help you get started in your search for a safe, comfortable and appropriate assisted living facility:

• Think ahead. What will the resident's future needs be and how will the facility meet those needs?
• Do admission and retention policies exclude people with severe cognitive impairments or severe physical disabilities?
• Does the ALF provide a written statement of the philosophy of care?
• Visit each facility more than once, sometimes unannounced.
• Visit at meal times, sample the food, observe the quality of meal time and the service.
• Observe interactions among residents and staff.
• Talk to residents.
• Learn what types of training staff receive and how frequently they receive training.
• Review state licensing reports

In a recent study by Consumer Reports, residents stated that excellent staff, high quality care, and people to talk to were much more important than fancy surroundings. A good match will depend not only on the quality of care but also on the match between the needs and preferences of the resident and the services and philosophy of the residence.

Several areas should be considered in addition to the match between services and needs:

• Financial - Is the facility within the means of the resident? (For more information on paying for an ALF, see "Paying for Assisted Living," below.
• Size - Is the smaller, more home-like environment of a board and care facility worth giving up some of the privacy that larger facilities offer? Are smaller common areas incorporated into the larger space to provide more intimate areas in which to interact?
• Physical Structure - Are kitchen or limited cooking facilities available? Having a kitchen may be important to someone who has always enjoyed cooking, whereas a kitchen may be an added risk to someone suffering from dementia. Are counters, cupboards, and light switches easy to reach? For individuals who wander, is there a safe, enclosed space for moving about?
• Social Activities and Recreation - Are there activities that would be of interest to the resident? When you visit the facility, do people seem engaged? Are events well attended? Will the spiritual or religious needs of the resident be met? Are there special activities for individuals with cognitive impairments?
• Location - Is the facility close to family and friends so visits can be made easily? Are shopping centers within walking distance?
• Ambience - Do the residents seem happy and well cared for? Do staff members seem to know residents' names and preferences? Do staff members inquire about the needs and preferences of you or your loved one? Do the staff members seem happy? Do residents interact with one another?
  

Using a checklist can help in evaluating the facility. Talking to current residents, visiting at different times of the day, having a meal or staying overnight can all help in developing a more realistic picture of the life within a facility.

Some aspects of the ALF are less apparent but equally important in determining the quality of care and the likelihood that it will be a good match. Be sure to ask about the following:

• Staff training, qualifications and turnover.
• Grievance procedures.
• Skilled nursing care policy and bed-hold policy (i.e., if the resident is admitted to the hospital or to a nursing home for acute care, how long the resident's place will be held by the ALF).
• Discharge, admission and retention policies.
• Policy regarding transfers and room changes within the facility.
• Rights of the residents.

Two areas deserve special consideration: care management and risk management. It is important that the facility be able to meet the evolving needs of the resident. Care management is the way in which these needs (medical, functional, emotional and social) are assessed and met. Who is involved in assessing the needs of the resident? How frequently is the resident reassessed? Who develops the care plan? These are all activities in which the family and the resident may want to participate, and
which may impact admission, discharge and/or additional fees.

The overarching goal of supportive housing is to allow the resident as much independence as possible. This independence needs to be balanced against the risks associated with it. For example, a resident who enjoys cooking, but who may not remember to turn off the stove, will need some oversight to ensure both his or her safety as well as the safety of the entire facility. While the above example seems fairly straightforward, different people have different ideas about what constitutes an appropriate level of risk. Someone who is prone to falling but adamant about not using a wheelchair or accepting help may feel that the freedom to move about independently is worth the risk of a fall. The assisted living facility may disagree. Many facilities have a written negotiated risk agreement that they ask residents to sign. It is always a good idea to have an attorney review any agreement before signing it.

Not only is independence circumscribed by risk concerns, but privacy is often sacrificed as well. In general, the more services an individual requires, the less privacy that individual will have. Small things can make a big difference in an individual's experience of independence and privacy. For example, being able to lock the door, set the temperature in the room, change seats at the dinner table or have overnight guests can all contribute to a feeling of ownership and independence.

Once You've Narrowed the Choices
After you've chosen a residence for your relative, you generally will meet with the administrator for the pre-admission appraisal. In order to determine the suitability of your relative for the residence, the facility staff should assess your loved one's capabilities, mental condition and social service needs. You may be asked to provide a completed physician's evaluation form. The administrator should explain the policies and services of the facility and answer any questions that you or your relative may have.

The admission process will involve filling out a number of forms. The most important of these is the admission or resident agreement. Review it carefully. This agreement should include the following: a list of services provided and what, if any, additional services have been agreed upon; the source, rate and due date of payments; termination, discharge and refund policies; restrictions and liabilities; and visiting hours. Take special note of the facility's policies regarding residents whose needs change. Will they have to move if a higher level of assistance is required due to deteriorating health or increased medical needs; or will the facility handle relocation or stepped-up care?

Paying for Assisted Living
Costs for assisted living can range from less than $10,000 a year to well over $50,000 a year. Nationally, costs average about $1,800 per month. Costs vary with the residence, room size/type (e.g., shared versus private) and the services required by the resident. Most facilities charge a basic monthly rate that covers rent and utilities, and then charge separately for services. Many facilities also charge a one-time entrance fee. Be sure that you fully understand what is included in the base price and how much to realistically expect in terms of additional payments. Some facilities go so far as to charge for helping someone get to the dining room.
The cost of assisted living will increase over time. It is not unusual for facilities to increase their rates by 3% - 5% per year. The need for additional services is also likely to increase over time. Facilities should provide you with their policies regarding rate changes.

In determining your ability to pay for a facility, several other factors should be considered:

• Are there any funds available through public programs? Less affluent older people may receive some financial assistance through Medicaid waiver programs.
• Does the resident have private, long-term care insurance that covers the cost of assisted living? If so, what are the restrictions on the policy and how will they affect the out-of-pocket costs to the resident?
• Some facilities require that residents use a specific pharmacy or medical center. Be sure that these medical facilities work with your relative's health insurance. This is especially important if an HMO is involved. It may also mean changing health care providers, which can sometimes be difficult for individuals who have been cared for by the same physician for years.
• If family members plan to help pay for the facility, make sure you understand what laws govern any financial assistance a resident may be receiving. For example, in some states contributions from family members could result in the resident's becoming ineligible for services (both in the ALF and with regard to health coverage) under Medicaid. If family contributions are allowable under state law, contributions should be paid directly to the facility rather than to the individual.
• Inquire about the refund policy. Some facilities offer a trial period to make sure that the facility is appropriate. Be sure to find out what the terms governing this period are.
  

As noted above, financing assisted living can be prohibitively expensive for many people. However, if the individual owns a home, it may be possible to use the equity from that home to help pay for residential care. A reverse annuity mortgage can give a homeowner a loan against the value of the house, allowing the person a monthly stipend. There are several types of home equity conversion loans that allow a homeowner to either sell home equity or borrow against the equity. It is prudent to check the business record of any lender by contacting the Better Business Bureau or other local consumer groups. An attorney with expertise in estate planning should be consulted before buying an annuity to ensure that eligibility for public benefits is not jeopardized in the future.

In addition to considering the financial resources of the resident, it is also important to consider the financial resources of the facility. Be wary of facilities that seem to have a lot of empty rooms and apartments. A hard sell is also a tip-off that the facility may be experiencing financial difficulties. It is always good to ask for a copy of the latest annual report if it is available.

Sources

Gaddy, Karen (2000). Special Care Environments: An Overview of State Laws for Care of Persons with Alzheimer's Disease. Bifocal: Newsletter of the ABA Commission on Legal Problems of the Elderly, Vol. 21, No. 2. Washington, DC.

Hawes, Rose M. and Phillips, C.D. (1999). A National Study of Assisted Living for the Frail Elderly: Results of a National Survey of Facilities. Myers Research Institute, Beachwood, OH.

Lieberman, Trudy and the editors of Consumer Reports (January, 2001). Is Assisted Living the Right Choice? Consumer Reports.

Mollica, R. (2000). State Assisted Living Policy: 2000. National Academy for State Health Policy, Portland, ME.

Stucki, B. R. and Mulvey, J. (2000). Can Aging Baby Boomers Avoid the Nursing Home?: Long-Term Care Insurance for Aging in Place. American Council of Life Insurers, Washington, DC.

Recommended Readings
Consumer Reports Complete Guide to Health Services for Seniors 2000 by Trudy Lieberman and the editors of Consumer Reports. Published by Three River Press, A Division of Random House, $19.95. Available by calling 800-500-9760 or on the web at www.consumerreports.org.

Beat the Nursing Home Trap : A Consumer's Guide to Assisted Living & Long-Term Care (3rd Edition) by Joseph L. Mathews. Published by Nolo Press, $21.95. Available by calling 1-800-728-3555 or on the web at www.NOLO.com.

The Complete Eldercare Planner : Where to Start, Which Questions to Ask, and How to Find Help by Joy Loverde. Published by Time Books, ($19.95). Available on the web at www.amazon.com and most bookstores.

Resources

Web Sites

Seniorresource.com
http://www.seniorresource.com

Elder Web
http://www.elderweb.com

Organizations

American Seniors Housing Association
5100 Wisconsin Avenue NW, Suite 307
Washington, DC 20016
(202) 237-0900
Website: www.seniorshousing.org

Assisted Living Federation of America
10300 Eaton Place, Suite 400
Fairfax, VA 22030
(703) 691-8100
Website: www.alfa.org
E-Mail: info@alfa.org

Consumer Consortium on Assisted Living
PO Box 3375
Arlington, VA 22203
(703) 841-2333
Website: www.ccal.org
E-mail: Membership@ccal.org

The National Center for Assisted Living
1201 "L" Street, N.W.
Washington, D.C. 20005
(202) 842-4444
Website: www.ncal.org

Prepared by Family Caregiver Alliance in cooperation with California's Caregiver Resource Centers. Reviewed by Robert Mollica, Deputy Director, National Academy for State Health Policy. Funded by the California Department of Mental Health.
Revised January, 2001. © All rights reserved.