Finding the right long-term care often means making difficult decisions during difficult times. Long-Term Care helps you plan ahead and quickly find the best care you can afford. With Long-Term Care, you'll be able to:
evaluate long-term care insurance
choose a nursing facility
get the most out of Medicare, Medicaid, and other benefit programs
Find the best care in the right place at the right price with this all-in-one guide!
Finding the right long-term care often means making difficult decisions during difficult times. Whether you're planning for the future or need to make a quick decision, Long-Term Care helps you understand the alternatives to nursing facilities and shows you how to find the best care you can afford.
With Long-Term Care, you'll be able to:
evaluate long-term care insurance
arrange home care
explore options beyond nursing homes
choose a nursing facility
get the most out of Medicare, Medicaid and other benefit programs
protect your assets, and
recognize and prevent elder fraud.
This completely updated edition includes an expanded discussion of Medicaid coverage, special long-term care insurance, assisted living, and long-term care. Plus, you'll get up-to-date benefit numbers, laws and taxes, and revised information on veterans' benefits.
With sensitivity and clarity, Attorney Joseph Matthews gives you everything you need to help plan for and make the best arrangements for long-term care.
“A straight-talking guide to choosing and paying for a nursing home, assisted living site or home care.” -U.S. News & Report
”This book offers great advice about selecting a nursing home.” -Los Angeles Times
Number of Pages
Joseph Matthews has been an attorney since 1971, and from 1975 to 1977 he taught at the law school of the University of California, Berkeley. He has for many years been involved in matters relating to seniors, and is the author of Social Security, Medicare & Government Pensions and Long Term Care: How to Plan & Play for It, as well as How to Win Your Personal Injury Claim.
1. Making Decisions About Long-Term Care
Make a Realistic Family Commitment
What Can You Afford?
Geriatric Care Managers
Other Legal and Financial Matters
2. At-Home Care
What Is Home Care?
How to Find Home Care Services
Kinds of Providers
What to Look For
Costs of Home Care
Financing Home Care Through Reverse Mortgages
Cashing in a Life Insurance Policy
Supplements to Home Care
3. Organized Senior Residences
Combination Residential Facilities
4. Nursing Facilities
Levels of Care
Choosing the Right Facility
Your Written Contract
5. Care for Elders With Alzheimer’s Disease
The Symptoms and Stages of Alzheimer’s
Home Care for Alzheimer’s
Residential Care Facilities for Alzheimer’s
6. Hospice Care
Medicare Eligibility for Hospice Care
Services Provided by Hospice
How Hospice Operates
Payment for Hospice Care
7. Medicare and Veterans’ Benefits
Medicare Coverage for Long-Term Care
Veterans’ Benefits for Long-Term Care
8. Medicaid Coverage for Long-Term Care
Eligibility for Medicaid
What Medicaid Pays For
Finding Out About Medicaid in Your State
If You Are Denied Medicaid Coverage
Medicaid Rules on Transfer of Assets
Strategies to Protect Your Assets
Long-Term Care State Partnership Insurance Protects Assets
9. Long-Term Care Insurance
Is Long-Term Care Insurance Right for You?
Finding Long-Term Care Policies
Warnings About Insurance Practices
Eligibility for LTCI
The Cost of Premiums
Kinds of Care the Policy Will Cover
Benefit Amounts and Length of Coverage
How Much Coverage You Need
Triggers That Start Your Benefits
Coverage Conditions and Exclusions
10. Protecting Choices About Medical Care and Finances
Health Care Decisions
Guardianships and Conservatorships
11. Elder Fraud
Why Elders Are Targets
Who Commits Elder Fraud
Types of Elder Fraud
Where to Get Help
Appendix: Resource Directory
State Agencies on Aging
Alzheimer’s Disease Organizations
Caregiver Support Groups
Home Care, Community Programs, and Senior Residences
Nursing Facility and Alternative Residence Organizations
Reverse Mortgage and Home Equity Conversion Assistance
Although the sudden onset of an illness or disability does not always permit much advanced planning for long-term care, this book encourages you to be the best comparison shopper possible. If you are able to explore alternatives before rushing to move into a nursing facility, you improve your chances of obtaining the level of care you need—and perhaps saving a great deal of money.
Being prepared and researching alternatives when choosing long-term care allows you to realistically assess what is needed, and to choose only the kind of care that is actually required. In this way, you can avoid the loss of independence and great cost that come with taking on more care than necessary. This is particularly true when some combination of home health care and personal assistance would be sufficient to permit a person to remain at home instead of entering a residential nursing facility. Or when an assisted living or residential care facility can provide sufficient care to allow a person to avoid entering a nursing facility. When time permits, doing some financial planning before residence in a long-term care facility becomes necessary may permit you to protect some of the value of your home or life’s savings.
Finally, and importantly, the more thorough you are, the greater the opportunity for everyone concerned to participate—particularly if the person who needs care is not easily able to investigate and make decisions on his or her own. With more alternatives, everyone involved will have greater emotional room to come to terms with the decisions that have to be made.
If you need care, you may find it a hard topic to raise with others. It may feel like a blow to your self-esteem or that it means you are really “old.” You may also be reluctant to begin a process of giving up some of your independence or surrendering full control over your life. And when you know you need the help of your family, you may be fearful of becoming a burden.
If you believe that someone else—a family member or other loved one—is in need of care, you may be reluctant to bring up the subject because it may seem like a challenge or an insult. And, within the family, there may be anxiety, guilt, and wide differences of opinion about what care is needed and who should provide it.
The first step in getting necessary care is to overcome your reluctance to talk about it. Once the discussion has begun, you can use the information in this book to organize and choose the right kinds of care.
Get Help From Others
To get the discussion underway and keep it on the right track, it is often best to look outside the family. An unrelated person can sometimes soothe ruffled family feathers, present a neutral opinion, and offer solutions the family might not know about. Also, you may find it easier to reveal fears and other feelings to an outsider than to an involved family member.
Here are some of the people you can turn to for help in beginning to evaluate long-term care needs:
• Your personal physician is often a good place to start, not necessarily to moderate discussions but to define your medical needs and refer you to others who may be helpful in making arrangements.
• Traditional word-of-mouth is still one of the best ways to begin tackling any new problem. Friends and neighbors whose opinions you trust, and who may have already faced similar situations, are often a good source of information. The people at your local senior center may know of sources for long‑term care assistance. These word-of-mouth sources often let you know of “unofficial” personal care aides who would not be available through more formal channels.
• A clergy member may be able to help directly or to refer you and your family to professionals who can introduce alternatives and coordinate planning.
Area Agencies on Aging
Area Agencies on Aging operate federally funded programs that help older persons and persons with disabilities live with dignity and choices in their homes and communities. An Agency on Aging may be able to help you choose and find the kind of long-term care that’s right for you.
Most states have their own Agencies on Aging—and there may be local offices of the state agency in your own community. To find your local agency, check the state government listings in the white pages, call the Eldercare Locator at 800-677-1116, or look online at www.eldercare.gov.
• County family service agencies, Area Agencies on Aging, or other senior information and referral services are experienced sources that can provide direct access to specific care providers and help you develop an overall care plan. These agencies can direct you to a counselor or social worker who specializes in long-term care for elders and can help you begin your discussions and planning. (See the Resource Directory in the appendix of this book.)
• If residence in a nursing facility is not absolutely necessary, many people make use of the services of a professional geriatric care manager to see what at-home and other supportive services are available and to organize care from different providers. (Geriatric care managers are discussed in detail later in this chapter.)
• If you or your loved one has Alzheimer’s disease or a similar mental impairment, you can turn to organizations that specialize in providing information and referrals to people facing these difficult situations. (See “Alzheimer’s Disease Organizations” in this book’s appendix.)
Involve the Care Receiver
If you are a family member helping to plan for someone else’s care, bear in mind that the most essential participant in planning long-term care is the person whose care is being considered.
Assess Medical Needs
Because a specific physical or mental condition often leads to the need for long-term care, one of the first things you should do is get professional advice both about the need for immediate care and about likely changes in the condition over time. Talk with your primary care physician first; he or she may refer you to a geriatric specialist for further consultation.
An additional resource to help you assess medical and personal care needs is a geriatric screening program. Local hospitals have them, as do community and county health centers. If you have trouble finding a geriatric screening program, check with your county social service agency or local or Area Agency on Aging, call the senior referral number in the white pages of the phone book, or on the Internet, search for “geriatric screening program” and the name of your city, county, or state.
Some important things to consider when assessing an older person’s need for medical care are:
• Specific medical requirements. The doctor or other health screening personnel can discuss the elder’s specific medical needs (such as monitoring and administering drugs or providing physical therapy), explain how they can be met, and let you know who can do it. The doctor or health care worker can also discuss the level of ongoing care that would be required to deliver those medical services: family members supplemented by occasional visits from home care aides, a more sophisticated home care program, or various levels of residential nursing facility care, for example.
• Changes in care over time. The doctor or other health care worker can also discuss the medical prognosis—that is, what the future is likely to hold: whether to anticipate a short or long recovery period, whether a condition is likely to stabilize, or whether it will become worse over time. Knowing about likely medical developments will help you plan the right level of care for these changes.
• Mental impairment. Thorough geriatric screening and evaluation are particularly important when the elder seems to have a mental impairment. An older person’s physical problems may become much more difficult to manage because of added symptoms of forgetfulness, disorientation, or general listlessness.
Such mental impairments may indicate the early stages of Alzheimer’s disease or other forms of dementia, which will require careful long-term care planning. (See Chapter 5 for a detailed discussion of care options for those suffering from Alzheimer’s disease or similar impairments.)
Sometimes, though, what looks like an irreversible loss of mental facilities may really be the result of some specific and treatable problem, such as improper medications or overmedication, poor nutrition, depression over the loss of a spouse or a friend, or a subtle medical condition that has not been diagnosed and treated. It is very important not to mistake a temporary and treatable loss of mental capacities for a permanent condition.
In determining the true nature and cause of any loss of mental faculties, family members and friends can be particularly helpful to physicians and other health workers. The people who see an older person frequently are in the best position to know what factors may be contributing to diminished mental capabilities.
Evaluate Personal Needs and Capabilities
You will also have to figure out what sort of personal, nonmedical care is needed and what aspects of daily life a person can still manage without outside assistance. The need and ability to care for oneself is not simply a matter of physical competence. Often, it depends just as much on personality and emotional state. So, don’t just consider what kind of care is needed and whether providers are available and affordable. The ultimate decision should also depend on how important it is to the elder to remain in control of his or her own life.
Some people fiercely hold on to personal independence and privacy. For these people (if they also have the ability to organize, manage, and pay for individual programs to meet their specific needs), it may be possible—and important—to stay at home and receive only minimal outside assistance.
Others may be willing to have an outside agency organize more comprehensive care programs, as long as they or their family members remain in primary control of daily lives. For one of these people, an agency-directed program of home care in a family residence or in secured housing, perhaps combined with adult day care, may be the best option, especially if family members are willing to give additional assistance.
Still other people prefer the security and ease of complete care organized and provided by others. For such a person, a residential care facility may be best, even though he or she may not physically require the high level of care offered there.
Learn About Family Leave Laws
The days and weeks when a family member’s need for long-term care becomes apparent can be extremely difficult and stressful. Balancing your work responsibilities with your efforts to understand, locate, and arrange care can be overwhelming.
In recent years, many states and the federal government have tried to help solve this problem by requiring employers to provide some unpaid leave when a family member needs attention because of a health crisis. The federal Family and Medical Leave Act (FMLA) provides some needed help by requiring the following:
• Companies with 50 or more employees must give workers up to 12 weeks per year of unpaid leave to care for a child, spouse, or parent with a serious health condition.
• Companies must allow employees to return to their old jobs, or equivalent jobs at the same pay, when they return to work.
• During the leave, companies must provide the same health benefits as when the employees are being paid.
However, the law does not apply to all employees—or to all caregiving situations. You are entitled to FMLA leave only if you have worked for your employer for at least a year and have worked at least 1,250 hours (about 25 hours per week) during that time. Also, you are entitled to FMLA leave only to provide care to a parent, spouse, or child—if you need time off to care for another close family member, such as a sibling, parent-in-law, or domestic partner, you can’t use FMLA leave.
Some state laws give workers more rights, apply to businesses with fewer than 50 employees, or provide longer leave periods. Some large companies also have their own leave policies which are more generous than state or federal laws require.
If some unpaid time off work would help you organize long-term care for a spouse or parent, check your employer’s policy and make sure it complies with the FMLA and the law of your state. If you return to work after unpaid leave and you find that your job has changed for the worse, you may have a legal claim under the FMLA or similar state laws.
For more information on the FMLA, contact the Department of Labor at 866-487-9243, or visit its website at www.dol.gov, where you will find helpful fact sheets on your rights under the law. For information on your state’s laws, contact your state labor department. The National Partnership for Women and Families in Washington, DC, has free information available on your rights under the FMLA, including a question-and-answer guide to the law’s provisions and information on state leave laws. This information is available on its website at www.nationalpartnership.org.
Finally, if the family member who needs care has long-term care insurance, check the policy to see if it provides for respite care. Respite care pays for home care aides who give short-term breaks to family members who care for an elder. (See Chapter 9 for a discussion of long-term care insurance.)
Long-Term Care: A Glossary of Terms
In this book, we use “long-term care” to mean regular assistance with medical care (nursing, medicating, and physical therapy) or personal needs (eating, dressing, bathing, and moving around) provided by someone outside an older person’s family. There are many varieties of long-term care—ranging from part-time home care and adult day care, to independent living and assisted living residential communities, to personal care residences and nursing facilities. Some long-term care is temporary—for example, just long enough to help an older person recover from a broken hip or a stroke. Often, though, once begun, it lasts for the remainder of an older person’s life.
Here, we provide brief definitions of various care options to help you keep the terms straight as you use this book. Bear in mind that most of these are not formal or technical terms—what people mean when they use these terms may differ slightly from place to place, or from facility to facility.
Adult day care. Services such as meals, social activities, and exercise programs, plus companionship, provided for free or low cost at senior centers or special adult day care centers. For seniors who live independently, either at home or with relatives. See “Supplements to Home Care” in Chapter 2.
Assisted living. A small private apartment, single room, or shared room in a residential facility (usually seniors only) that offers meals, assistance with the activities of daily living, some personal care and housekeeping, and close monitoring of residents’ health and safety, but not nursing or other medical care, except by special arrangement. See “Assisted Living” in Chapter 3.
Board and care facility/home. A long-term care residence facility—often small, sometimes in a private home—in which a resident is provided a room (often shared), meals, assistance with personal care, activities, and health and safety monitoring, but not nursing or other medical care. Also called a residential care facility for the elderly, a personal care facility, or a sheltered care facility. See “Levels of Care” in Chapter 4.
Continuing care retirement community. A multilevel facility that permits a resident to remain in the facility while moving among independent living, assisted living, and nursing facility care, as the resident’s needs require. See “Combination Residential Facilities” in Chapter 3.
Convalescent home. A general term that could describe either a nursing facility or a board and care or sheltered care home. Like “rest home,” the term is being used less and less.
Custodial care facility. Any long-term care residential facility—including nursing facility, board and care home, residential care facility for the elderly, personal care facility, and sheltered care facility—in which residents get a private or shared room, meals, assistance with personal care, physical and social activities, and round-the-clock monitoring. Depending on the level of the facility, residents may also receive regular nursing or other medical care. See “Levels of Care” in Chapter 4.
Extended care facility. A long-term care residence offering more than one level of care within the same facility. It may combine independent living with assisted living, assisted living with a custodial care facility, a custodial care facility with skilled nursing care, or some other combination of these. it does not necessarily offer all levels of care, as a continuing care retirement community does. See “Combination Residential Facilities” in Chapter 3.
Geriatric care manager. Someone who assists in locating and arranging short-term or long-term care for an elder, either at home or in a residential setting. See “Geriatric Care Managers” In Chapter 1.
Home care. Short-term or long-term care at a senior’s residence, offering assistance with the activities of daily living, personal care, housekeeping, and meal preparation. If it also includes “home health care” (see below) provided by a certified home health care agency, it can provide nursing and some other medical and therapeutic services. Home care can be provided in private residences or in (most) assisted living facilities, either by a home care agency or by independent paid or family providers. See Chapter 2.
Home health care. Usually short-term care following a serious illness, injury, or surgery. Provides nursing and other medical and therapeutic care during recovery. Can be combined with nonmedical home care, including help with activities of daily living, personal care, and housekeeping. Must be provided by state-licensed home health care agency. See Chapter 2.
Home health care agency. Certified by each state and by Medicare, these agencies can provide everything from skilled nursing care and therapy to assistance with grocery shopping and personal paperwork. See Chapter 2.
Hospice care. Hospice is a special type of care, usually provided in the home, for people who are terminally ill and likely to live less than six months. Hospice does not treat the illness but instead focuses on the patient’s comfort, particularly pain and other symptom relief. It also provides respite care for primary caregivers. Medicare pays almost the entire cost of hospice care. See Chapter 6.
Independent living residence/community. A building or community specially designed for and restricted to seniors, offering a rented or purchased apartment or house. It provides on-site common facilities and services, but not personal or health care. See “Independent Living” in Chapter 3.
Intermediate care nursing facility. A residential facility that provides some nursing and other medical care, but not as much as a skilled nursing facility provides. these facilities provide long-term care of the chronically ill or disabled, or short-term care until a patient/resident can be moved to a custodial care facility. See “Levels of Care” in Chapter 4.
Long-term care. An extended period—either permanent or during recovery from a serious illness or injury—of assistance with basic activities of daily living (sometimes called personal care), such as bathing, eating, dressing, and moving around. It includes monitoring of health and safety and may also include nursing care and physical or other therapy, meals, social activities, and housekeeping. Long-term care can be provided in a private home, an organized senior residence, or nursing facility.
Long-term care facility. Any of several types of residences designed and operated to provide on-site assistance with basic activities of daily living and to monitor health and safety. See Chapter 4.
Multilevel facility. Same as “extended care facility,” above.
Nursing facility/home: A residential care facility that provides long-term custodial care. Depending on the type of facility, it may also provide more or less extensive nursing care and physical or other therapy. See Chapter 4.
Personal care facility. Same as “board and care home,” above.
Rehabilitation facility. Similar to a skilled nursing facility (see below), rehabilitation facilities provide a variety of short-term inpatient therapies (physical, occupational, and speech) during recovery from a serious illness, injury, or surgery.
Residential care facility for the elderly (RCFE). Another name for a personal care facility or board and care home.
Respite care. Temporary, part-time company for a dependent elder intended to give the primary caregiver (usually a spouse or another family member) some time off. See Chapter 2.
Rest home. An old-fashioned term, not used much any longer, for a long-term care facility.
Senior residence. A residential building or community that is designed for and limited to seniors. This term is often used to refer to independent living or assisted living. See Chapter 3.
Sheltered care. Usually refers to a “board and care home” (see above) but sometimes refers to “assisted living” (see above).
Skilled nursing facility (SNF). An inpatient facility that provides round-the-clock medical monitoring and daily, intensive nursing and therapy, as well as all necessary personal care. Usually limited to short-term stays following serious injury, illness, or surgery. See “Levels of Care” in Chapter 4.
Make a Realistic Family Commitment
Whether older people have the option to receive long-term care while maintaining their independence often depends on the extent to which family members are able and willing to help. But family situations vary widely in terms of whether relatives are willing and able to provide care, transportation, companionship, or financial support to an elder. Before any long-term care program is organized—particularly when the elder is to remain at home without a spouse—family members must get together and discuss what each of them will do to help meet needs that cannot be met by outside care or would be prohibitively expensive if provided by paid caregivers.
Staying at Home
An older person’s ability to stay at home while receiving long-term care may depend on several kinds of family help. The elder may need daily or weekly assistance with personal or medical care that is not provided by a home care or other outside agency. Help with housekeeping, shopping, and home maintenance may also be necessary. And there will certainly be a need for regular visits and transportation to allow the elder to maintain contact with the outside world. The elder may also need help to plan, coordinate, and oversee outside care programs and to plan and administer financial matters.
Moving in With Family
If older people are unable to maintain themselves in their own homes, they may still be able to avoid the cost and loss of independence a residential care facility requires by moving in with willing family members and receiving long-term home care there. This kind of arrangement may permit family members to supplement home care provided by outside agencies with direct care of their own, which can help keep down costs while allowing the elder more personal control.
But such an arrangement is obviously not for every family. It requires physical space and financial resources. And both the elder and the relatives with whom the elder lives must be willing to make it work. Everyone involved has to give up some room and some privacy and make adjustments in daily habits and expectations. Relatives with whom the elder does not live must also be willing to share the responsibilities by visiting, taking the elder on outings, and providing financial assistance. Obviously, all this takes a lot of talking, planning, and ongoing cooperation among all family members.
Entering a Residential Facility
Recent surveys of nursing facility residents have shown that contact with the world outside—leaving the facility for visits and outings and receiving visits, phone calls, and mail from family and friends—is their single greatest concern. So even when an elder moves into an organized residential setting that provides personal care and social activities, or into a long-term care facility that provides complete care, family participation remains of the utmost importance.
To prepare for any residential care setting, family members must be willing to discuss how much each is realistically able and willing to help. But most important, family members must discuss the future directly with the loved one who needs care.
What Can You Afford?
Most communities have a wide variety of home care programs and residential facilities, but almost all of them are quite costly. Paid home care can be much less expensive than residential care if only needed on a part-time basis. But as extensive paid home care is used, its costs can exceed residential care.
Residential facilities also vary greatly in cost—independent living facilities begin at around $25,000 per year, and the least expensive assisted living and personal care facilities cost about $30,000 per year. The average cost of a nursing facility is about $60,000 to $90,000 per year, depending on the state. And prices for each of these types of facilities may reach $150,000 per year in more expensive urban areas.
Unfortunately, government programs and private insurance pay a much smaller chunk of these costs than most people think. Medicare pays only about 10% of all nursing facility costs—and this all goes to short-term skilled nursing care, not long-term residential care. Similarly, Medicare pays only for short-term home care for people who need actual nursing—it pays nothing for long-term care at home. (See Chapter 7 for a discussion of Medicare, Medigap insurance, and veterans’ benefits.) Medicaid (or Medi-Cal in California)—the federal program for low-income people—pays about half of all long-term nursing facility costs and a significant amount of home care charges. But Medicaid will pay for these only after you have used up almost all of your savings to pay for your own care. And Medicaid might not pay anything at all for assisted living or some residential care facilities. (See Chapter 8.) Private long-term care insurance may pay some portion of nursing facility and home care costs, but it usually doesn’t pay for everything—and it pays nothing at all for many types of residential care facilities.
Medicare, Medicaid, Veterans Benefits, and Insurance: An Overview
A federal government program for which virtually everyone 65 and over is eligible
Short-term only; skilled nursing and therapy, but not custodial care
Skilled nursing facility only, following a hospital stay; full payment for only 20 days, partial payment for up to 100 days; only in facilities certified by Medicare
Covers almost all costs for six months’ care (sometimes more) at home
Private insurance policies that can be purchased by individuals 65 or over
Some policies provide limited coverage for short-term care if Medicare also covers it; no coverage for long-term care
Many policies cover short-term stays in skilled nursing facilities if Medicare also covers them, paying the amount Medicare does not; no coverage for long-term custodial care
MediCare Part C; Medicare Advantage plans
Managed care or other plans specifically for people on Medicare
Limited coverage for short-term care under Medicare rules; some plans offer extra home care coverage under easier rules than Medicare’s; no coverage for long-term care
Short-term stays in skilled nursing facilities under rules similar to Medicare; no coverage for long-term custodial care
Same coverage as regular Medicare
Medicaid (Medi-Cal in California)
Varies in each state; to be eligible, you must have very low income and few assets, not counting your home, car, and household goods
Personal as well as medical care; usually limited in amount
Usually no coverage
Partial coverage in many states for Medicaid-certified assisted living facilities; limited eligibility and coverage
Extensive coverage in facilities certified by Medicaid: no time limit
Same coverage as Medicare
Some long-term residential and home care for certain veterans, and monthly benefits payments for some veterans and surviving spouses
Some home and community-based care programs for eligible veterans. Also, loans and grants available to modify a home
The VA operates its own nursing homes for qualifying veterans, and contracts with private nursing homes where no VA nursing home is available
Hospice available as part of VA medical benefits
Long-Term Care Insurance
Private insurance policies; vary greatly in coverage and amount of benefits
Some policies cover only home care; more expensive comprehensive policies cover both home care and residential care; amount of coverage depends on amount of premium paid
Some policies cover long-term care in residential care (shelter care) or assisted living facilities if policyholder is unable to perform certain amount of activities of daily living
Coverage in licensed nursing and board and care facilities for custodial care if medically necessary or if elder is unable to perform activities of daily living; benefits depend on cost of policy and rarely cover full cost of care
Not usually any additional coverage
Medicare, Medicaid, Veterans Benefits, and Insurance
Throughout this book, we discuss Medicare, Medicaid, veterans benefits, and private insurance coverage (or lack thereof) of long-term care costs. Chapter 7 is devoted entirely to Medicare, private Medigap insurance, and veterans benefits coverage of long-term care. Chapter 8 covers Medicaid eligibility and coverage and how to protect personal assets and still qualify for Medicaid coverage. Chapter 9 covers long-term care insurance.
The chart above gives a brief introduction to each of these types of coverage so that you will be familiar with them as you begin to read about long-term care alternatives.
Determine Income and Assets
The first step in figuring out what money is realistically available for someone’s long-term care is to add up that person’s income and available assets (and subtract their liabilities). Once you have a complete picture of someone’s income and assets, you may be able to take certain steps to protect some of those assets from long-term care costs. (See Chapter 8.)
Family members can also begin to think about their own financial contributions. While there may be no immediate need for money from relatives, the decisions you make now about long-term care may determine if and when money from beyond the elder’s own resources will be required. The earlier this is discussed, the easier it will be to plan and provide for it.
Here are the most common items (and some that you might overlook) to factor in as you try to get a complete picture of your income and assets. The last category—liabilities—is a set-off which you subtract from available financial resources. Because this list is only for your own reference, you don’t have to use precise figures.
INCOME AND ASSETS
I. Estimated Income
Ongoing business income __________________________________________
Social Security retirement or disability benefits ________________________
As you fill out this list, you may discover that your financial and ownership documents are located in a number of different places. If so, this is a good time to gather them together and put them in one safe place, then give a list of the documents and their location to family members or others you trust. Get It Together, by Melanie Cullen and Shae Irving (Nolo), can help you gather and organize this information.
Geriatric Care Managers
Geriatric care managers (also known as private care managers for the aging) are professional counselors or guides who, on a one-time or ongoing basis, help assess long-term care needs and organize services to meet those needs. They can be particularly useful when family members don’t live in the same city as the person who needs the care.
Geriatric care managers can assist with placing elders in different types of assisted living, residential care, and nursing facilities. They can be invaluable in guiding you through the maze of home health care and supporting services needed for long-term care in the home. Care managers are generally familiar with residential facilities and can help find a facility that meets the elder’s care needs and ability to pay. They can also evaluate home care agencies. They may know of difficult-to-find services that may supplement care provided by an agency or of individual caregivers who can fill gaps in home care. And, they can help you set up a coordinated program of care among several providers. They also follow up, monitoring ongoing care and helping make changes as necessary.
Despite a care manager’s expertise, decisions about long-term care are too important to leave solely in the hands of any one advisor. You and other family members should consider and evaluate a care manager’s recommendations. You should also meet with all caregivers and visit any residence the care manager suggests. Keep in mind that you know best the abilities, needs, and personality of the elder who requires care. Also, the more you learn about long-term care choices and participate in the decision-making process, the better able you will be to choose among the alternatives a care manager may offer.
Where to Find Geriatric Care Managers
As with other long-term care resources, your personal physician, a local senior citizens center, or friends and neighbors might be able to refer you to a geriatric care manager.
You can also find geriatric care managers by searching online or in the white pages of the telephone directory under “Geriatric Care,” “Geriatric Management,” “Older Adults Care Managers,” or something similar. Your local senior information or senior referral directory—usually listed separately in the white pages (sometimes under county or city offices or public health department)—can also make referrals. You can also find geriatric care managers near you by using the online directory of the National Association of Professional Geriatric Care Managers at www.caremanager.org, or by calling them at 520-881-8008.
Evaluating a Geriatric Care Manager
There is no easy way to know in advance whether a particular geriatric care manager is likely to be effective. Some care managers are connected to organizations dedicated to elder care; other excellent care managers work on their own. Unfortunately, there are no firm guidelines and no state certifications yet for this relatively new field. Here are some ideas on what to ask before hiring a geriatric care manager:
• Where has the care manager worked before? Experience with a local public agency that deals with the elderly is a good sign, as is work at a local nursing facility or home health care agency. Whatever the form, some public health experience is essential. The care manager should provide you with references from previous employment if you ask for them.
• What is the care manager’s professional training? Normally, a care manager should have a license or degree in public health nursing, public health management, social work, or gerontology. If not, make sure the person has an extensive work history that you can check personally.
• Does the care manager belong to any state or national professional organizations? Membership in a professional organization, such as the National Association of Social Workers, Visiting Nurse Association, or National Association of Private Geriatric Care Managers, does not guarantee quality of work, but it may indicate a professional attitude and a willingness to have credentials verified.
• How does the care manager structure fees? Find out in advance exactly how much you will have to pay—and what you will get for your money. Some organizations with public or philanthropic support offer free or low-cost services to low-income individuals and families. Many private care managers charge a flat fee ($200 to $500) for the initial family visit and evaluation, then an hourly fee ($50 to $250) for making arrangements and follow-up visits. Whatever the terms, make sure to get them in writing.
• How extensive is the follow-up? After initial arrangements have been made, to what extent is the care manager available for personal or telephone consultations? For emergencies? What are the charges? Are there continuing services available, such as weekly or monthly reviews or visits, either by phone or in person? And, what happens if a service or provider the care manager has arranged for does not work out? On what terms will the care manager arrange for replacement services?
• Does the care manager have a business contract of any kind with a particular home care agency or residential facility? If so, be cautious about accepting the care manager’s recommendation of that agency or facility because the care manager has a motive to steer business there. Make sure that the care manager presents you with some alternatives.
• Does the care manager have any clients or former clients who can give a personal recommendation? Speaking with someone who has used the care manager’s services may give you confidence in the care manager and a better idea of what to expect.
Stay Involved in the Process
Even if you rely on a care manager, you should still do some research of your own. Check with friends, relatives, and any other potential sources of information about possible care options. There is information on finding home care in Chapter 2, choosing an organized senior residence or assisted living facility in Chapter 3, and locating long-term care facilities in Chapter 4.
Two good general resources about home care and residential care in your area are:
• Eldercare Locator: (800-677-1116, www.eldercare.gov), a nonprofit, government-sponsored free service run by the National Association of Area Agencies on Aging, and
• Total Living Choices: www.tlchoices.com.
Although these services cannot tell you which option or facility would be best for you, they can give you a list of choices to investigate, either on your own or with the help of a geriatric care manager.
Other Legal and Financial Matters
When you consider long-term care needs, you should also review other legal and financial matters. A person who needs long-term care may have increasing difficulty taking care of personal matters; this is usually a good time to review legal and financial documents and arrangements. These issues are discussed more fully in Chapters 8, 9, and 10.
Health Care Directives
When long-term care becomes necessary, you should start preparing to make decisions about future health care choices. In particular, you need to think about what kind of medical treatments you would like to receive if you become terminally ill or are no longer able to communicate your wishes about your medical care.
To make sure that your medical choices are respected, you can create two basic legal documents:
• a medical directive (sometimes referred to as a living will or advanced health care directive), which sets forth the type of care you wish to receive if you become incapacitated, and
• a durable power of attorney for health care, in which you name someone you trust to make sure that you get the kind of medical care you want—and, in some states, to make decisions about your medical care if you are unable to do so.
We discuss these documents in detail in Chapter 10.
Durable Powers of Attorney for Finances
As you grow older, you will want to make sure that someone will make financial decisions in accordance with your wishes if you are no longer able to handle your financial matters on your own. A durable power of attorney for finances can take effect right away or only if and when you become legally incompetent to handle your own financial decisions. It can help ensure that your finances are handled as you wish, by someone you trust, without the expensive, cumbersome, and time-consuming process of going to court. (See “Financial Decisions” in Chapter 10.)
Although an elder’s need for long-term care certainly does not mean that death is imminent, it may be a signal of decreasing competence to make decisions about income, assets, and estate. It is a good idea to review any existing will—which may be old and out of date—and to make a new will that meets with the current wishes of the elder.
However, if there is any question about an older person’s mental competence to make a new will, or about whether the elder’s decisions about leaving property to others, might be unduly influenced by another person, consult with a lawyer who specializes in wills and probate matters before taking action.
See “Estate Planning Resources From Nolo” in Chapter 10 for information about will and estate planning self-help resources.
A living trust is a legal document that allows you to retain control over your property during your lifetime and arrange for that property to be transferred, at your death, to beneficiaries you name—all without going through probate. You designate what property goes into the trust and who gets it when you die. During your lifetime, you act as the trustee—and you have the right to change the trust property, change the beneficiary, or revoke the trust altogether. On your death, the trust property is distributed directly to the named beneficiaries, without going through probate or any other legal proceeding. •