Assisted Living and Nursing Home Facilities

A survivor may have concerns about being able to remain in his or her current home after cancer treatment. This could be due to a problem with temporary or permanent physical limitations or because of a broader need for assistance with health and personal care. If you have concerns about managing your needs at home when home health care is not an option, it might be time to consider assisted living or nursing home facilities that combine both care and a residential atmosphere.

Assisted Living and Nursing Home Facilities: Detailed Information

This information is meant to be a general introduction to this topic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal or financial advice. You should consult a trained professional for more information. Please read the Suggestions section for questions to ask and for more resources.

In some cases, a survivor may have concerns about being able to remain in his or her current home after cancer treatment. This could be due to a problem with temporary or permanent physical limitations or because of a broader need for assistance with health and personal care. If you have concerns about managing your needs at home, and home health care is not an option, it might be time to consider assisted living or nursing home facilities that combine both medical care and a residential atmosphere.

Many people are opposed to the idea of moving into an assisted living or nursing home facility. A survivor may feel too young for this type of living arrangement and fear the thought of giving up more control in life. Yet, in a good care facility with a supportive environment, survivors may actually be able to gain more control over the things that really matter to them by letting other people assist with the tasks that have become difficult to manage on their own.

This document provides an overview of the process of researching assisted living and nursing home services, including:

• Signs that assisted living or nursing home help may be right for you
• Defining the difference between assisted living and nursing homes
• Paying for assisted living or nursing home care
• Finding quality assisted living or nursing home facilities
• Factors to consider when choosing assisted living or nursing home care
• What to consider when visiting a care facility
• The rights of nursing home patients
• Emotional aspects of this type of change in living arrangements

What are signs that assisted living or nursing home care may be right for you?

There are certain signs or indicators that assisted living or nursing home care may be beneficial to you. For example, you may have health and safety needs that can no longer be managed in a private home environment. You, along with family or trusted friends, can discuss any concerns that you may have with your medical team.

Your doctor, nurse, or another member of your medical team or a hospital social worker may do a formal assessment of your physical, mental, environmental and financial factors. This helps you to determine whether there are gaps in your ability to manage your own care and remain safely independent. A recommendation may be made to look into assisted living or nursing home programs as a way to address and lessen risks to your well-being.

Areas of life that may be considered as risk factors include the following:

• Physical health: Limitations caused by chronic diseases or physical disability that cause difficulty performing activities of daily living (ADLs) such as walking, dressing, bathing and preparing meals.
• Mental health: Diagnosis of psychiatric disorders, such as depression, anxiety, psychosis or dementia that result in confusion, disorientation or isolation.
• Concerns about medications: Inability to take medication as directed or a possible need for intravenous (IV) drugs or dialysis.
• Support systems: Lack of a support system, such as key friends and family who can be called in an emergency and are able to assist when you need them.
• Finances: Difficulty managing your own financial affairs or inability to meet present and future care and home maintenance needs with current income sources.

An assessment can identify areas where support and problem solving may be needed to remain independent. For example, there may be home health care services that are available to allow an individual to continue to live at home. Knowing when and what help is needed may lead to a healthier lifestyle as well as a longer and better quality of life.

A document describing home health care can be found in the list of Practical Topics.

What is the difference between assisted living and nursing homes?

Assisted living and nursing home facilities provide a combination of medical and custodial care services in a residential setting outside of your home. They provide an alternative when care at home is no longer workable, but medical care is still necessary.

The following chart provides an overview of assisted living and nursing home services:

 

	Assisted Living Facilities	Nursing Homes
Definition	Assisted living homes provide a combination of housing, personalized supportive services and health care designed to meet the needs of people who require assistance with the activities of daily living. Assisted living homes are not for people who need constant professional nursing care.	Nursing homes may also be called skilled nursing facilities, long-term care facilities or convalescent homes. They are licensed by the state and may be certified. Regular medical supervision and rehabilitation therapy are available. Nursing home patients generally rely on assistance with most or all activities of daily living, such as meals, bathing, dressing and toileting.
Services	Services include meals, housekeeping services, transportation, health promotion and exercise programs, personal laundry services, social and recreational activities. Provides access to health and medical services such as emergency call systems, bathing, dressing, medication management and needed assistance with eating, walking and toileting.	Provides 24-hour skilled nursing care and medical supervision for the more acute (critically ill) patients that are one step below hospital acute care. Nursing homes offer a range of services that include medical care, assistance with personal care, meals, housekeeping and social activities.
Payment	Not usually paid for by health insurance or the Medicare or Medicaid programs. Assisted living care may be paid for by a long-term care insurance policy, but most individuals pay the cost themselves. Costs will vary depending on the level of care and services provided.	Sometimes paid for by private pay, private health insurance policies or long-term care insurance policies. Medicare or Medicaid may pay for nursing home care under certain circumstances. Costs will vary depending on the level of care and services provided.

There are a variety of assisted living arrangements that offer a range of services, including:

1. Assisted living in independent apartments—This type of arrangement is for those who can do most things for themselves. Individuals rent a small assisted living apartment. Services may include housekeeping, social activities, meals and transportation for shopping and other activities.
2. Assisted living with dependent care—This arrangement provides more care services, such as cooking, dressing, bathing and assistance with medications. The housing arrangements for this type of care range from small homes with a few residents to large communities with hundreds of rooms.
3. Assisted living with specialized care—This type of living arrangement provides specialized care for the needs of individuals with specific diseases. For example, there are facilities for degenerative mental diseases, such as Alzheimer's or Parkinson's disease.
4. Skilled nursing care—This level of care is usually temporary, such as to enable you to recover from surgery or rehabilitate after a hospitalization for a difficult treatment regimen.
5. Long-term custodial care—This type of care is to help people on a long-term basis. Most long-term care is to assist people with non-skilled (custodial) support services such as dressing, bathing, and using the bathroom.

Some long-term care facilities provide both assisted living and nursing home care. This allows a resident to start out in an assisted living environment and move into the nursing home level of care later if medical needs change. This can make any necessary transition into a nursing home environment more comfortable.

If you are not sure which type of facility would be best for you, speak with your doctor, a private care manager (such as an elder care advocate with an area office on aging) or a hospital social worker. You can also contact care facilities directly and speak with someone in the admissions department.

How can survivors pay for assisted living or nursing home care?

Payment may come from your insurance coverage, from personal funds, or from a combination of both sources. Check with the Medicare, Medicaid and insurance providers for detailed information about their policies.

The following table provides basic information about these most common payment sources and what payment for assisted living and nursing home facilities may be:

 

Medicare	Medicaid	Insurance
Medicare is a federal health insurance program for people age 65 and older and for people with disabilities. The Social Security Administration oversees Medicare. Medicare provides for hospital and nursing facility care (Part A) and physician services, therapies and home health care (Part B). A nursing home must be certified by Medicare for this type of payment. To qualify for Medicare payment, the patient must have been in a hospital for a related three-day inpatient hospital stay and enter the nursing home within 30 days after a hospital stay. Under Medicare, the patient must need skilled nursing (usually physical, speech or occupational therapy) for the same condition that required hospitalization. If there is other insurance coverage, ask your insurance company how the private health insurance plan and Medicare will coordinate payments. Medicare may impose restrictions on payment or length of stay in the care facility.	Medicaid is a public assistance program funded through the state to individuals unable to pay for health care. Medicaid can be accessed only when all prior assets and funds are depleted. Income eligibility criteria must be met to qualify for Medicaid. Medicaid can reimburse nursing homes for the long-term care of some qualifying individuals. Medicaid pays for needs in a nursing home, including room, meals and medical care. There are no time limits on payments or the length of stay in the facility. Assisted living care is usually not covered, but each state has its own rules and policies. In some states, Medicaid pays for Assisted Living care through Medicaid Waivers. The care facility must be certified by Medicaid for this type of payment. If there is other insurance coverage, ask your insurance company how the private health insurance plan and Medicaid will coordinate payments. The patient's income, including Social Security Disability Income (SSDI), Supplemental Security Insurance (SSI) and pension benefits must go to the facility directly. Medicaid pays the difference between the total of that amount and the approved Medicaid rate for the facility chosen.	Long-term Care Insurance: Pays for a succession of caregiving services for chronically ill or elderly people. Care may be provided in a facility or in the person's home with a nurse or aide. Private Health Insurance: Check the insurance policy and contact the insurance company to find out what services and facilities are covered, and under what conditions. If the patient also qualifies for Medicaid or Medicare, ask the insurance company how the private health insurance plan will coordinate payments. Note: Some policies will pay for nursing home care or care in the home, but not for care in assisted living facilities. If it appears that an assisted living facility can provide better care at less cost, then talk with the insurance company and show them the costs for each type of care. The insurance company may agree to pay all or part of the cost of an assisted living facility if it is less expensive than the nursing home or home care program.

Personal funds: If there is no private health insurance that will pay for the assisted living or nursing home facility, and you do not qualify for Medicare or Medicaid, consider whether you can afford to pay for the care yourself. Take into consideration how long you will be able to pay.

Combination of sources: Some people start out paying for nursing home care through their personal funds and then later qualify for Medicaid when their personal funds run out. This is called "spending down" your assets.

For more information about how Medicare, Medicaid, insurance and other types of payments work, talk with a hospital or care facility social worker, an area agency on aging, a hospital discharge planner, an attorney who specializes in elder law, or an admissions department of an assisted living or nursing home facility.

When you call, you will be asked to provide information such as:

1. Your Social Security number
2. Information about your health condition
3. The reason an assisted living or nursing home facility is necessary
4. Information about your current insurance coverage

How can a survivor find assisted living or nursing home facilities?

Under the federal Older Americans Act, each state is required to have an Ombudsman Program to provide information about how to find an assisted living or nursing home facility and what to do to receive quality care. The program also responds to complaints and will provide an ombudsman to advocate for residents and work for improvements in the long-term care system.

Other good sources that can provide you with a list of assisted living or nursing home facilities are:

• Elder care advocates, such as through an Area Agency on Aging
• Hospital discharge planners
• Hospital or care facility social workers
• Doctors or other members of your medical team
• Local and national cancer organizations
• The Joint Commission

Reports on specific facilities are available from agencies such as Medicare, state licensing agencies, and the Web site of the Joint Commission. Quality reports are provided on more than 1,500 assisted living facilities in the United States.

Reports will contain such information as:

• Availability of activities for residents
• Complaints filed
• Health and safety information, such as infection rates and safety hazards
• History of medication errors
• Staff training and qualifications

As you review the reports about assisted living or nursing home facilities, keep in mind:

1. On some Web sites, such as the Medicare Web site, the data was reported by the facilities themselves and has not been independently checked.
2. Reports may only be summaries that do not list specific findings. However, you can request a full report.
3. If you have any concerns or questions about a facility after reading a report, contact the agency that prepared the report or the admissions department of the facility.

You can also check with your local Department of Consumer Affairs or Better Business Bureau to see if any complaints have been filed against the facility.

What factors need to be considered when choosing an assisted living or nursing home facility?

• Licensure and certification: Is the facility licensed, certified and does it have a good record of providing quality care?
• Cost: How will the costs be covered for this living arrangement?
• Assistance: Does the facility provide the medical and personal assistance you need to manage your daily needs?
• Facility philosophy: What goals does the facility have for residents? For example, does the facility encourage residents to be active and independent?
• Medical care: Does the facility have reasonable access to medical care, treatment centers and a hospital if necessary?
• Life in the facility: Are social or learning opportunities offered along with medical and practical care?
• Residents: Would you be comfortable living in the same environment with the residents of the facility?

The best way to find out whether the facility appeals to you is to visit the facility on multiple occasions and at different times of the day. Be sure to talk with both residents and staff.

What should survivors consider when visiting an assisted living or nursing home facility?

First, call the facilities that are of initial interest to find out if they accept your type of payment plan and if they have space available.

Next, arrange for at least one visit to the facility, and if possible, make two or three visits to get a more complete assessment of the services:

1. Try to visit at least one time unannounced, during a meal time and on a weekend. This will allow you to see what food is served and to see how many staff members are available on the weekend. Keep in mind that weekends are a time when there is likely to be the least number of staff on duty.
2. Speak with residents and staff members to find out what life is really like in the facility.
3. Make a list of what factors are most important in your selection of an assisted living or nursing home facility. These may include:
   • Convenience to family and friends
   • Cost and insurance coverage
   • Comfort of the environment
   • Level of independence given to you
4. You may want to bring a friend or family member with you so you can get their impressions of the facility as well.

What rights do survivors have when they live in a facility?

Federal and state laws give all residents in a nursing home the right to dignity, choice, quality services and activities, and self-determination. This means you have the right to choose or deny what services and treatments you receive as long as you are competent to make your own decisions.

Additional laws apply to people who are paying for their care through Medicare or Medicaid. For more information about these laws, speak with a representative from your local area agency on aging, a hospital discharge planner, an attorney who specializes in elder law or someone from the admissions department of the care facility.

Remember, if you choose a facility and find that you are not happy there, there are things that can be done to improve your level of satisfaction with your living situation. For example, you may make different housing arrangements, move to another facility, or talk with others about correcting the problems within the current facility to improve your quality of life.

Every state has a "Long Term Care Ombudsman" program that will provide information and assist you with getting quality care. Ombudsmen are trained to resolve problems and will keep information you provide them confidential, unless you give them permission to share your concerns. An ombudsman will identify, investigate and resolve complaints made by or on behalf of residents of individual care facilities. The program will advocate for residents of nursing homes, board and care homes, assisted living facilities and other adult care facilities.

What if a survivor is not ready for this type of change in a living situation?

Many placements made directly from the hospital to a skilled nursing facility are temporary, for an average of four to six weeks, with a return to the previous living arrangement after the skilled treatment and rehabilitation is completed. However, even if an assisted living or nursing home situation is only temporary, such a major change in your life can bring up feelings of loss or fears about the future. You may experience grief about having less independence and feel anxiety about leaving familiar surroundings. Such feelings and concerns are understandable and many people have them.

Consider sharing your feelings with trusted family, friends and other people who are in your situation, such as a support group. If your feelings about this decision become overwhelming, discuss your concerns with a professional such as a hospital social worker, psychologist or counselor.

Keep in mind that just because you enter a nursing home or assisted living program does not mean that this will be a permanent situation. If you regain strength and an ability to live independently, or if your support system and resources change, other housing options may become available.

This document was produced in collaboration with:

David S. Landay, Esq., author of Be Prepared, The Complete Financial, Legal and Practical Guide for Living with Cancer, HIV and Other Life-Challenging Conditions.

Works Cited:

"Caring for Parents: My Parents – How Do I Know If They Need Help?" AARP.org. 19 July 2006.
www.aarp.org

Landay, David S. Be Prepared: The Complete Financial, Legal and Practical Guide to Living with Cancer, HIV and Other Life-Challenging Conditions. New York :St. Martin's Press, 1998.

"The Long-Term Care Ombudsman Program." About.com. 10 July 2006.
http://seniorhealth.about.com

Morris, Virginia. How to Care For Aging Parents. New York: Workman Publishing, 1996.

"Senior Housing Types and Glossary of Senior Housing Terms." Senior Outlook.com. Senior Outlook: A Guide to Senior Housing. 9 August 2006.
www.senioroutlook.com

U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services. Medicare & You: 2006. Baltimore, MD, 2006.

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Assisted Living and Nursing Homes: Suggestions

The suggestions that follow are based on the information presented in the Detailed Information document. They are meant to help you take what you learn and apply the information to your own needs. This information is not intended nor should it be interpreted as providing professional medical, legal or financial advice. You should consult a trained professional for more information.

Before looking into assisted living or nursing home options, assess your level of independence and ability to care for yourself. You can ask your doctor or a hospital social worker to do an assessment of your need for this type of assistance. Start by asking yourself questions, such as the following:

• Are you having problems shopping, preparing meals or eating?
• Do you have problems walking around your home and sometimes fall?
• Is it difficult to do laundry?
• Are you having problems keeping up your house or apartment?
• Do you have concerns that you might not be taking your medications correctly?
• Are you having trouble going up or down stairs?
• Are you able to do your own bathing and grooming?
• Do you have any concerns about your safety?
• Do you feel socially isolated or desire more companionship and support?

Think about your long-term goals. If it is important to you to remain in your own home for as long as possible, find out what options might be available to make this possible. These may include home health care assistance and help from family and friends.

Prepare a budget, if possible, to set aside funds to pay for care in an assisted living or nursing home facility.

Educate yourself about your options. Consider meeting with a financial planner to discuss how your estate planning and finances could be impacted by your future health needs.

Think about what you might do with a current home, furnishings and other important items if you make a change in your living arrangements.

Talk with family and friends about your feelings regarding the changes in your living arrangements. Discuss what can be done to minimize the stress of the situation.

Make multiple visits, if you can, to assisted living and nursing home facilities in which you have an interest. Use a notebook or file folder to keep a record of the information you collect about each, including:

• When you visited or talked with facility personnel
• Who you have talked with
• What your impressions were
• What and when your next steps will be, if any
• What services are included (and excluded) at the prices quoted

Understand your rights regarding assisted living and nursing home care. The National Citizens' Coalition for Nursing Home Reform program (www.nursinghomeaction.com) provides information and assistance for residents of nursing homes, board and care homes, assisted living facilities and other adult care facilities. Ombudsmen are advocates who work to resolve problems and improve care. They also assist residents and their loved ones with matters concerning resident rights that have been established by federal and state laws, such as:

• The right to be treated with respect and dignity
• The right to manage personal finances
• The right to report grievances without fear of retaliation
• The right to associate and communicate privately with people
• The right to send and receive personal mail
• The right to access personal records at a reasonable cost
• The right to have confidentiality of personal and medical records
• The right to be free from chemical and physical restraints
• The right to be given advance notice of transfer
• The right to be given notice in advance of discharge
• The right to be fully informed of services available and all charges prior to admission into a care facility

If there are concerns about abuse, neglect or exploitation within a long-term care facility, contact your county's Adult Protective Services office.

Consider the following questions about different aspects of assisted living and nursing home facilities during your decision-making process:

1. Accommodations

• How clean is the facility, especially the kitchen and bathrooms? Does the facility have a pleasant smell and appear neat and orderly?
• Are the living spaces comfortable? Can you personalize them with your own furnishings and items from home?
• Will you have a private room or a shared room? If you will be sharing a room, who picks your roommate?
• Are the group spaces comfortable and inviting?
• Are the premises safe, with good lighting and enough space to move around in a wheelchair? Can two wheelchairs pass in the hall? Are there accident prevention features such as grab bars in the bathrooms?

Are there limitations on who can come to visit you or what hours they can visit? Can pets be brought in for a visit?

Are there any facility rules or policies that you would find restrictive or personally unacceptable?

2. Personal and medical care

• How is the care? Ask residents, visitors, staff and family members of residents what they think about life in the facility and the quality of care.
• Is the medical care what you need, and of the appropriate quality? How are medical emergencies handled? What is the number of nurses compared to the number of patients? Of nurses aides to patients?
• Can residents see their own doctors or do they have to see doctors that work for the facility?
• Is the staff caring and appropriately trained for their jobs? Do they respond to residents' needs quickly? Is there a large staff turnover?
• If your health condition gets worse and your medical needs increase, who decides if it is time to move to a facility or area that offers more care?
• If the facility is going to help you with taking your medications, does it permit you to use your own pharmacy or do you have to use the facility's pharmacy? Who is responsible for administering and keeping track of your medications?
• Are there limits on what types of medications can be administered in the facility? For example, many assisted living facilities will not administer IV medications, and there may be limitations on this type of therapy in some skilled facilities.

3. Activities and services

• What types of activities and programs are offered? If possible, visit an activities room while an activity is in session.
• Are there limitations on or rules about leaving the facility? What transportation is available to you?
• How often do residents get to go out for events in the community? Do residents get to choose activities and where they want to go? Are there arrangements that allow people using wheelchairs to participate?
• What services are included and what services require an added cost? Are the additional costs reasonable and affordable to you?
• What additional services are provided on-site, such as exercise facilities, hair or cosmetic salons, or weekly religious services?

4. Food and meals

• Are meals included, and if so, which ones? Will the facility provide a special diet if you need one?
• How is the food? Can you sample the food during a visit?
• Can family or friends bring food to you? Can you keep your own food in your room?

5. Residents

• Do the residents seem to be well cared for, enjoying themselves and interacting with each other?
• Talk to some of the residents. Are they satisfied with the level of care they are receiving? What do they like and dislike about the living arrangements?
• Find out if the patients and/or their families have created a council or group to speak on behalf of the concerns of patients. If there is a council, speak with members to find out their views about the advantages and disadvantages of life in the facility.

6. The assisted living or nursing home admission contract

If a contract is required, you may want to show it to an attorney who specializes in elder law. Consider the following questions:

• If you have to pay money up front, is that money fully or partially refundable if you are not happy there? How does the refund process work?
• If the contract is for a minimum number of months or years? What happens if you become unhappy there before the contract expires?
• Does the contract specify a specific unit you will live in? Is the same unit guaranteed to be available to you if you have to leave the facility for a temporary hospital stay?
• Does the contract mention transportation? Who is responsible for scheduling and carrying out transportation for your personal and medical needs?
• Do you fully understand the terms of the contract? Have you taken enough time to think about and decide whether this is the best arrangement for you?

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