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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 and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources documents for questions to ask and for more resources. Note: As with all LIVESTRONG documents, individuals living with cancer will be referred to as "survivors." Also in keeping with LIVESTRONG style, this document will talk directly to you, the survivor, even though the topic may not relate to your current needs or condition. The terms "family" and "loved ones" are used to mean all of the people that you care about and turn to for support, including relatives, spouses, partners and friends. The term "caregiver" is used to mean whoever is providing most of your day-to-day care, whether that person is a spouse, partner, child, sibling, relative, friend or privately hired person.
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:
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:
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:
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:
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:
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:
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:
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?
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:
4. You may want to bring a friend or family member with you so you can get their impressions of the facility as well.
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.
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.
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.
"Caring for Parents: My Parents - How Do I Know If They Need Help?" AARP.org. 19 July 2006. 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. 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. U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services. Medicare & You: 2006. Baltimore, MD, 2006.
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 and financial advice. You should consult a trained professional for more information. Please read the Additional Resources document for links to more resources. 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:
2. Personal and medical care
3. Activities and services
4. Food and meals
5. Residents
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:
Assisted Living and Nursing Home Facilities: Additional Resources
The resources listed below provide more detailed information and support services to help you with assisted living and nursing home facilities. Please read the Detailed Information and Suggestions document for more information and questions to ask. Click a resource for more information: Eldercare Locator: Connecting You to Community Services
The Eldercare Locator is a free national service of the U.S. Administration on Aging, U.S. Department of Health and Human Services. It provides a connection to resources that enable older persons to live independently in their communities. The Web site lists phone numbers for state and local Area Agencies on Aging that serve older adults and their caregivers. People of all ages can use this resource to find in-home care. LIVESTRONG SurvivorCare Program
LIVESTRONG SurvivorCare offers assistance to all cancer survivors, including the person diagnosed, caregivers, family and friends. The program provides education, information about treatment options and new treatments in development, counseling services and assistance with financial, employment or insurance issues. To provide these services, LIVESTRONG SurvivorCare has partnered with several organizations, including CancerCare, Patient Advocate Foundation and EmergingMed. The LIVESTRONG Survivorship Notebook is a tool that can help you organize and guide your cancer experience. The portable, three-ring binder contains a variety of information covering a full range of physical, emotional and practical survivorship topics. You may order a free LIVESTRONG Survivorship Notebook at www.livestrong.org/notebook. Shipping and handling charges will apply. Medicare.gov
Medicare.gov is the official U.S. government Web site for people with Medicare. In addition to information about Medicare eligibility and benefits, the site has publications about choosing a nursing or assisted living home, long-term care planning, home health care, alternatives to nursing homes, and more. A search tool allows you to find nursing home, home health care and physical therapy services in your area. In addition, links are provided to state resources for home health care and nursing/assisted living home information. Some information on the Web site is available in Spanish. National Association of Professional Geriatric Care Managers, Inc.
The National Association of Professional Geriatric Care Managers is an organization of nurses, social workers, gerontologists, psychologists and other professionals who specialize in the field of elder care. Through this Web site, you can find a private geriatric care manager in your area, learn more about the services a geriatric care manager can provide, and find additional care management resources, such as government agencies, national organizations and community services. You can also order brochures and books related to caregiving issues. National Center for Assisted Living The National Center for Assisted Living is part of the American Health Care Association. The Web site offers consumer information and educational materials about assisted living and long-term care, including finding a facility, financial information and a guide for families. Tools are provided to help you determine what level of care you need or find a facility in your area. A glossary of assisted living terms is included as well. National Citizens' Coalition for Nursing Home Reform
The National Citizens' Coalition for Nursing Home Reform is a consumer information and advocacy organization that provides information about selecting a long-term care facility (nursing home, assisted living, and other settings), getting quality care, family involvement, resident rights and resolving problems. Contact information is provided for the long-term care ombudsmen in each state, as well as other organizations that can provide assistance. Quality Check
Through this Web site, you can check the Quality Reports on nearly 15,000 long-term care facilities, home care agencies, hospitals and other organizations across the nation that are accredited by the Joint Commission. You can search by facility name, zip code or city and state. These reports include the organization's accreditation decision, information about the facility's services, and compliance with the Joint Commission's National Patient Safety Goals. The site also has information about how to read these reports and understand what qualities are being rated. AARP
AARP is a nonprofit organization for people over the age of 50. The AARP Web site includes information on a number of financial and practical subjects, and you do not have to be an AARP member or over the age of 50 to access these articles. Information about assisted living and nursing home facilities includes articles about choosing a facility, checklists of questions to ask and additional resources that can provide more information. Some information on the site is available in Spanish.
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