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NATIONAL ALLIANCE FOR CAREGIVING National Alliance for Caregiving in collaboration with the General Federation of Women's Clubs, Business and Professional Women/USA, and the Employee Assistance Professionals Association

National Alliance for Caregiving 4720 Montgomery Lane, Suite 642 Bethesda, MD 20814-3425 www.caregiving.org

(c) 1999

Consultants John Migliaccio, Ph.D. Maturity Mark Services Neal E. Cutler, Ph.D. The Joseph E. Boettner/Davis W. Gregg Chair of Financial Gerontology Widener University Table of Contents

PART ONE — CAREGIVING FOR YOUR OLDER RELATIVE Introduction ...... 3

Caregiving's Challenge ...... 4 Health Issues ...... 4 Medicaid vs. Medicare ...... 5 Disease-Specific Information ...... 6 Basic Care ...... 8 Medication Management ...... 9 Legal Documents ...... 1 0 Caregiver Stress ...... 1 0 Balancing Work and Caregiving ...... 1 3

Options for Senior Living ...... 1 3 Aging in Your Own Home ...... 1 3 Bringing Aging Services into the Home ...... 1 6 Adult Day Services ...... 1 8 Assisted Living: The Rental vs. Condo Models ...... 1 9 Nursing Homes vs. Assisted Living and Other Housing/Care Options...... 2 0

Options for Long-Term Care Financing ...... 2 1 Other Ways of Paying for Long-Term Care ...... 2 2

PART TWO — PLANNING FOR YOUR OWN LONG-TERM CARE General Health and Financial Topics ...... 2 3 Medicare vs. Social Security Eligibility...... 2 3 Disability Insurance vs. Life Insurance ...... 2 4 Life Insurance: Term vs. Investment-based Insurance ...... 2 4

Basic Financial Planning for Later Life ...... 2 5 Financial Planning Stages to Know and Understand ...... 2 5 Defined Benefit vs. Defined Contribution Pensions ...... 2 6 Pension Rights of Spouses and Surviving Spouses ...... 2 7 Retirement, Early Retirement, and Health Insurance ...... 2 7 Saving and Investing for Retirement ...... 2 8 Long-Term Care Insurance: The Basics ...... 2 9 Harvesting Your Retirement Investments ...... 3 1

Choosing and Using Professional Financial Advisors...... 3 2 Part One — Caregiving for Your Older Relative Introduction The United States is undergoing what generation." Whether or not you are many experts refer to as a longevity truly sandwiched between taking care revolution. Not only are people living of both young children and aging longer now than in the year 1900, we parents, or are only providing care for are living longer in old age. For an older person, you still have the joint example, in 1940 there was about a 7% responsibility for the elders — and for chance that a 65-year-old would live to yourself. Over the past few years, the age 90. By the year 2000, the estimate National Alliance for Caregiving (the could more than triple to 26%1. “Alliance”) has conducted several national studies of caregivers and But living longer does not always mean caregiving. One of the major findings living healthier. One of the is that caregivers desire information, increasingly important — but less education, and resources on the recognized — consequences of the financial and health aspects of longevity revolution is the change in caregiving. Equally important, the need for long-term care. Many caregivers need and want information people reading and using this guide are to help them plan for their own future family caregivers. Others anticipate needs in the areas of finance and long- becoming caregivers of an older relative term care. in the near future. Almost 80% of all the care provided to older people is The aim of this resource guide for care- “informal," that is, provided by family givers is to introduce you to a broad members or other unpaid volunteer array of subjects that can be helpful to caregivers in the home rather than by you as a caregiver. In caregiving professionals or institutions2. preparation for this guide, the Alliance Benefit programs for those over 65, conducted a Baby Boomer women such as Medicare, provide very little caregivers' survey and then held a financial assistance for long-term care, series of focus groups with members of especially in the home. This is part of the General Federation of Women's the reason why family caregivers step Clubs, the Business and Professional in when needed, often providing Women/USA, and the Employee multiple care services for a much longer Assistance Professionals Association — period than they anticipated. its partner organizations for this project. In response to the There's another important aspect of survey and the focus group requests, we caregiving: While you are providing developed the guide in two parts. The care for others, you should also be first part of the guide covers areas preparing for your own future health, which can help you as caregiver of financial, and long-term care needs. others, while Part Two concentrates on We've all heard of the “sandwich helping you in planning for your own -3- future needs. In this guide, we provide concerns their medical history, you with a basic introduction to each immediate medical problems, subject, show its connection to other prescriptions and over-the-counter topics and to caregiving tasks, and medications, and probable course of identify key resources where you can chronic illnesses. turn for further study and information. Caregiving and planning for your own The best place to start gathering needs are difficult tasks. This guide can information is with the care recipient's be a valuable tool to assist you in both health care professionals — doctors, areas. specialists, nurses, and pharmacists — who are currently providing health care Caregiving's Challenge services. Very often, they have gathered a full medical history as part of their Health Issues treatment of your loved one and can fill Caregiving for an older relative, spouse, in any information gaps you may have, or other loved one usually starts for a and vice versa. Once you obtain the health-related reason, whether from a basic information (e.g., name, address, crisis or the worsening of a chronic phone number), it's advisable to condition. Some of the most common organize this information in one place health problems for people over 65 that is easily accessible to you and include arthritis, high blood pressure, other caregivers. If you're not familiar heart disease, hearing impairments, with these health providers, they are cataracts, and mobility problems. Any often identified on insurance invoices, one of these health conditions can Medicare bills, and other documents. create difficulty for an older person performing everyday activities such as Once you have identified the health walking, bathing, eating, dressing and providers treating your relative, other normal daily tasks which define contact them and let them know you their ability to live independently. are involved with their patient. When they require assistance with these Important questions to ask include: “Activities of Daily Living" (ADLs), a spouse, relative, or friend usually steps - What are the specific conditions or in to assist by providing care diseases for which they are providing themselves, arranging for care, or both. treatment, including the current status of treatment, and prognosis for Every caregiver wants to be able to recovery or improvement? How long provide as much care as possible, and has the treatment been provided, and often steps into an emergency situation. how long is it expected to continue? Regardless of the circumstances, one - What are the implications of the vital piece of information you need to condition for the lifestyle of the care know is the health status of your loved recipient and the caregiver? Is it an one. The important information -4- acute condition (a serious short-term Many problems of old age are not condition) that will respond to natural or inevitable consequences of immediate treatment, or is it a chronic the aging process, even if they are condition (one that recurs frequently associated with advanced age, and over a long period of time) that will many of these problems can be dealt require ongoing long-term care? with if discovered early. With this basic information you should be able to - What are the medications being develop a realistic assessment of the prescribed, including dosage and health issues facing the person you are schedule? caring for, and have a better understanding of the caregiving - What are sources of information and responsibilities you are facing. assistance regarding the condition being treated? Medicaid vs. Medicare Even with these resources, however, it Medicare is the national health is often up to the caregiver to take an insurance program for older (age 65+) advocacy role for the care recipient Americans, paying for doctors' bills and with medical professionals, hospitals, or associated services, and hospital and service providers. Physicians sometimes hospitalization services. All older men do not notice changes in the patient and women who are part of the Social because of their intermittent contact Security system, no matter what their with them. Or, they may miss income or the size of their Social distinguishing Alzheimer’s Disease from Security retirement benefit, are eligible other medically treatable forms of for Medicare. dementia. Find out if there is a geriatrician or a Geriatric Assessment Medicare does not pay for the Clinic nearby offering specialized typical long-term care support diagnoses and services. The best entry services most people need. By contrast, to such a clinic is through the older Medicaid is a joint state-federal health person’s general practitioner. If the insurance program for low-income patient belongs to a Health people of all ages. For older people who Maintenance Organization, there may do require chronic long-term nursing be geriatric specialists within the group home residence and who have depleted affiliated with the HMO. Pursue your their financial resources, Medicaid may questions and concerns with every pay the nursing home bills. Generally, agency or professional until you are this payment comes only after it has satisfied with the answers (if necessary, been certified that the older person does be prepared to advocate with the care not have “sufficient" financial resources recipient's health care system for all the (usually less than $2,000). Because each services they offer). of the 50 States administers its own Medicaid program, the rules and

-5- definitions of what are “sufficiently" www.hcfa.gov/medicaid/ltchomep.htm. low financial resources vary from state to state — as do the level of services Disease-Specific provided and the amounts paid by Information Medicaid. Be sure to find out the eligibility rules in your older relative's When asked what the most valuable state. Medicaid also has very strict piece of information they have obtained “spend down" requirements, often is, many caregivers cite information specifying how and when assets can be about the care recipient's disease, such disposed of before Medicaid eligibility as what to expect, the stages of the begins — in many cases, it can be as disease, and how to care for someone long as 2-3 years. with the disease. Of course, each caregiving situation is different, and FURTHER INFORMATION: you must be sensitive to the care - Basic elements of the Medicare recipient's specific needs. Although program, its costs, lists of medical and caregivers are as diverse a group as health services that are covered and those they care for, there are some those that are not, can be found in the common guidelines to follow in order updated Medicare and You publication. to promote well-being, such as daily This booklet describing basic Medicare exercise, proper nutrition, and self- rights and benefits is available in education (as these apply to individual libraries, Social Security offices, most situations). The following resources hospitals, and from the Medicare may help you learn about the assistance website: www.medicare.gov/pubs. The available for specific diseases/ website offers an enormous amount of conditions: general and detailed information, as well as links to dozens of other The National Health Information Center governmental and informational (NHIC) provides central health websites relevant to elder health, health information referral services for costs, and Medicare. consumers and professionals using a database of over 1,400 national - Comprehensive Medicaid information associations, government agencies and and guidance is available on other organizations. 800-336-4797 www.hcfa.gov/medicaid. The site provides detailed information on Healthfinder is an Internet site that eligibility, services available, and links consumers and professionals to state-specific differences for child health and human services information. health, elders, and services in general. This site includes 4,000 resources on A separate collection of information 1,000 topics which include aging, AIDS, directly relevant to Medicaid support cancer, heart disease, Medicare and for long-term care services is also Medicaid. www.healthfinder.gov. available: -6- The Wellness Interactive Network is a “After A Heart Attack" and “How You health resource directory with health Can Help Your Doctor Treat Your High care topics such as disease management Blood Pressure." 800-242-8721 (call for and prevention, advice on nutrition and nearest mailing address) exercise, and a drug information www.americanheart.org. database. www.stayhealthy.com. The Arthritis Foundation has chapters The Alzheimer's Association is a nationwide that offer health education voluntary organization that sponsors programs, self-help courses, exercise public education programs and offers programs, support groups, public supportive services to patient and forums, and more. Local chapters families who are coping with provide general information and referral Alzheimer's disease. 800-272-3900 services. 800-283-7800 1330 W. 919 N. Michigan Ave., Ste. 1100, Peachtree St., Atlanta, GA 30309 Chicago, IL 60611. www.alz.org www.arthritis.org. The National Hospice Organization The American Cancer Society has local operates a toll-free hospice referral line units which sponsor a wide range of for terminally ill people. Individuals can services for cancer patients and their contact NHO to learn about hospice families, including self-help groups, services in their area. Materials are transportation, programs and limited available on request. 800-658-8898 financial aid. 800-227-2345 1599 1901 N. Moore St., Ste. 901, Arlington, Clifton Rd., NE, Atlanta, GA 30329 VA 22209 www.nho.org. www.cancer.org. The National Multiple Sclerosis Society The American Diabetes Association provides a wide range of services in the works to educate the public to areas of education, information and recognize the warning signs of diabetes referral, counseling, and public policy and to realize the importance of prompt development and advocacy. 800-344- treatment. The toll-free telephone 4867 733 3rd Ave., 6th Fl., NY, NY service will provide information about 10017 www.dcwnmss.org. diagnosis and treatment of diabetes and about resources available to people with The National Osteoporosis Foundation the disease. 800-342-2383 1660 Duke distributes information about St., Alexandria, VA 22314 osteoporosis to people with the www.diabetes.org. condition, their families, the general public, and health professionals. NOF The American Heart Association (AHA) offers continuing education programs distributes public education materials and funds research. Newsletters are on the prevention and control of available. A list of materials is available diseases of the heart and circulatory on request. 202-463-7002 1232 22nd system. The AHA distributes a number St, NW, Washington, DC 20037 of pamphlets for older adults including: www.nof.org. -7- Parkinson's Disease Foundation FURTHER INFORMATION: provides background literature, exercise AARP sponsors educational programs at materials, a quarterly newsletter, some local chapters. Local chapters are personal responses to written inquiries, listed in the telephone directory or can and a physician referral service. 800- be found by calling them directly. 457-6676 710 W. 168th St., NY, NY Publication lists are available upon 10032 www.pdf.org. request. 202-434-2277 601 E. St., NW, Washington, DC 20049 Basic Care www.aarp.org.

Caregivers provide a wide range of care The federal Administration on Aging to their care recipients. After disease- (AOA) offers programs to older people specific information, the National and their families in order to help meet Alliance for Caregiving (NAC) survey their social and human service needs. and focus groups most requested The programs are offered through the information about basic care. Basic care nationwide network of Area Agencies may include information on feeding, on Aging (see below). Older people and bathing, keeping care recipients their families can participate in a range comfortable or helping them move of AOA supported services at the state around. and local levels including education, transportation, senior centers, and Although there is no single national homemaker services. A list of training network, a variety of publications is available upon request: organizations and agencies provide AOA, Department of Health and Human education and training for caregivers. Services, 330 Independence Ave., SW, It may seem overwhelming for you Washington, DC 20201 www.aoa.dhhs.gov. even to contemplate finding the time for a training program, but some The Eldercare Locator is a toll-free agencies offer respite (short-term relief number, funded by the Federal for the caregiver of a frail person) or Government, that provides the other programs to help you get training. numbers to the nearest AAA or other Below are resources that can help aging services organization in the zip caregivers to find education and/or code where an older person lives. 800- training that can meet their needs. 677-1116. AAAs are aging offices in Please be advised that this is not a every county or multicounty area where complete list. The Area Agency on older persons, their families, caregivers Aging (AAA) in your county should be or anyone concerned about the welfare able to provide further information, if of an older person can obtain needed. information on basic care and other topics as well as referral to services and benefits in their community. AAAs are listed in the telephone directory under -8- the city or county government heading. multiple medications are taken, as is often the case for older people, there is Children of Aging Parents (CAPS) an increased likelihood of side effects or provides information and emotional drug interactions that can cause support to caregivers of older people. additional health problems. In fact, this CAPS serves as a national is one of the leading concerns that clearinghouse for information on caregivers should be aware of. Getting resources and issues dealing with older medication regimens under control is people, especially support groups. not difficult, but usually requires some Caregivers nationwide can contact the “detective" work by the caregiver, and information and referral service to learn consultation with a doctor. about local resources and programs. CAPS produces and distributes literature Among the things to do are: for caregivers. 800-227-7294 1609 Woodbourne Rd., Ste. 302A, Levittown, - Read all labels and directions for use, PA 19057 www.careguide.net. and all precautions and warnings for any medicine being used. National Family Caregivers Association - Follow directions for use carefully, offers a website and newsletter and especially any special instructions on allows caregivers to share experiences. how to take the medication, or about 800-896-3650 10605 Concord St., Ste. other medications or foods to avoid. 501, Kensington, MD 20895 www. nfcares.org. - Get a current list of all medications being used. Check medicine cabinets, Medication Management bedrooms, and kitchen cabinets where prescription and OTC medicines might Consumers have never had as much be stored. access to medications, especially over- the-counter (OTC) medications, as they - Inform all health providers about have today. For many reasons, there is medications being used, and keep a list a new “era of self-medication" with of current medications handy for many OTC medications now available office visits to physicians, pharmacists, which were formerly only available dentists, clinics, etc. through prescription. This has helped - Check medicine cabinets twice a year. reduce health care costs, but has also Discard any expired medications, those led to problems due to self-medication. not in their original container, and Older adults report two to three minor those no longer being used. One sure chronic health problems, very often way to discard them is to flush them treated with over-the-counter medications. While both prescription down the toilet. and non-prescription medications are - The bathroom cabinet may not be the generally safe and effective, when best place for medications, which

-9- usually require a cool, dry location. Be and financial matters. Another type of sure medicines needing refrigeration are DPOA is the Durable Power of Attorney stored properly. for Health Care, or “health care proxy" allowing the designated agent to make - If you have questions, take the medical decisions on behalf of the care medicines to a doctor, pharmacist, or recipient. other health professional for information and assistance. Other important legal documents include a valid will, an Advance For further information about Directive, and a Living Will. Advance medication management you can directives specify treatments and contact: medical procedures the care recipient prefers, while living wills specify American Society of Consultant medical care procedures in the event of Pharmacists. 703-739-1316 1321 a terminal illness or condition. These Duke St., Alexandria, VA 22314 documents should be in the possession www.ascpfoundation.org. of the caregiver, with copies available Consumer Healthcare Products for the physician, health institution, and Association 202-429-9260 1150 family attorney. Connecticut Ave., NW, Ste., 1200 Washington, DC 20036 Attorneys with specialized legal www.chpa-info.org. knowledge in the field of aging, advanced estate planning, and elder law United Seniors Health Cooperative (202) can be located by contacting the 479-6973 409 Third St, SW, Ste 200, National Academy of Elder Law Washington, DC 20024 Attorneys in Tucson, AZ (602-881- www.ushc-online.org. 4005), or your local or state bar association lawyer referral service. Legal Documents Caregiver Stress Sometimes caregiving involves legal issues related to the older person's Family caregivers are subject to stress “incapacity" (inability to care for him from a variety of sources — physical, or herself) or “incompetence" (inability emotional and financial. Although we to understand the consequences of hear a great deal about its negative his/her actions). Getting legal assistance effects, stress is a normal part of daily for completing some needed documents life. In fact, some stress is necessary for can ease the caregiving burden. These motivating us to act. However, too documents include a Durable Power of much stress can be detrimental to Attorney (DPOA) designating a person effective problem solving and who can make decisions and act on eventually to our health and well-being. behalf of the care recipient in property This is especially true in a caregiving

-10- crisis. Under these circumstances, you - Community services for both older may feel helpless and not know where people and caregivers: contact area to turn for help, or even what resources agencies on aging, home health, or are available to assist you and your respite service providers. loved one. - Governmental and benefit programs: determine Medicare/Medicaid coverage, Crisis Management long-term care insurance benefits. How can you deal with the stress of a caregiving crisis? First, assess the First, determine how quickly you must situation realistically. act, what resources are available to you, and what information you need to deal · Is the crisis immediate or an with the immediate situation. Gaining impending one in the near future? some level of control over a crisis by · What are the circumstances stabilizing the caregiving situation and contributing to your sense of crisis? your own feelings and taking some action to resolve the crisis will all serve · What immediate support resources — to reduce your stress. family members, neighbors, friends who have experienced similar situations or Second, realize that you are not alone, feelings — are available to you? and that there are resources to help you. It's quite normal to have One of the most effective responses to conflicting feelings — guilt, denial, and the stress of a crisis is to act to regain even anger. By sharing your feelings, control of the situation. thoughts and concerns with others you Regaining control, reducing your stress can establish some areas of emotional level, and reacting effectively to a crisis support for yourself. can be as simple as gathering the Third, take care of yourself, both information necessary to make sound physically and emotionally. It is decisions. This information includes: especially important to remember that - Health data: know medical history, we get no formal training or prescriptions, medications; understand preparation for being an adult caregiver the immediate and long-term medical for an older loved one, so don't be too problems of the person you're caring hard on yourself — there is enough for. stress on you already! - Financial and legal information: Chronic Caregiver Stress know health and other insurance The emotional and physical effects of coverage; obtain power of attorney (if stress can creep up on everyone. Be appropriate) and/or advance medical aware of the signs and symptoms of directives. stress in yourself and with other caregivers so that you can seek some -11- relief when you or they need it. situation more calmly and effectively. Mild exercise — a walk, swim, yoga Typical warning signs of stress include: exercises — can also quickly reduce your stress level. Sometimes, a personal - Reduced attention span and “affirmation" (a statement or personal concentration reminder of a positive personal - Reduced effectiveness at work or at characteristic or coping capacity you home. have), such as the famous Alcoholics - Unusual or frequent memory lapses. Anonymous reminder “One day at a - Clear thinking and information time," is sufficient to reduce stress and processing are affected. remind yourself that you can make it - Constant irritability, or dulled through this day despite its difficulties emotions. and challenges. Get someone to give - Physical aches and pains, irregular you a break and take some time off for heartbeat, sweating, skin rashes, and/ something you love to do — a movie; a or stomach problems. relaxing long, hot bath; reading a book; having your hair done. - Avoiding regular activities. - Sleeplessness. If you feel that constant stress has brought you to the point of burnout, If you regularly experience any of professional help may be necessary, for these, stress may be catching up with your sake as well as the sake of those you, and you should seek help, or be you love. If you suspect that caregiving sure to have some ways of coping with is affecting your physical or mental the stress of caregiving. When health, see your physician or other caregivers experience stress very health professional who can suggest intensely, or over long periods of time, ways to help you cope with the stress they may suffer from “burnout." you're experiencing. Local caregiver Burnout - neglecting your own needs to support groups can also be very helpful, the point where you become so as well as caregiver respite programs fatigued, malnourished, or emotionally which can relieve you of your overburdened that you can no longer caregiving activities for short periods of continue caregiving — is harmful not time. only to yourself, but to your loved ones as well. Whatever your method of choice for reducing stress, the most important There are a variety of ways to provide thing to remember is that taking care of some quick relief for stress. Sometimes yourself is just as important as taking just taking a deep breath or “counting care of those you love. to ten" will relieve the immediate stress you are experiencing and allow you to continue responding to a stressful -12- Balancing Work and effectively with a more flexible work schedule? Does the company provide Caregiving any assistance or benefits for working caregivers? The Family and Medical What would you do if you were forced Leave Act provides for specific periods to choose between your job and your of unpaid leave for caregiving for ill family? Every day caregivers are asked parents or children and can be used for to do just that, often facing difficult short-term caregiving emergencies. For choices about whom or what to most employed caregivers, however, the sacrifice for the sake of the other. typical long-term nature of caregiving Sixty-four percent of caregivers work responsibilities requires longer term full or part-time. There is no magic solutions. Also, check with your human formula for what is most important, or resources person or the employee what will work for you in making that assistance program to see what benefits decision, but the advice from working your company offers. caregivers is that it is almost impossible to “have it all." The reality is that you Remember you are not alone in this must be prepared to face the necessary challenge, many caregivers face the tradeoffs of balancing sometimes difficult choices of family and career. A competing demands on your physical, perspective from others is available in emotional, and sometimes financial several books: “Balancing Act: How resources. Managers Can Integrate Successful Careers and Fulfilling Personal Lives," Decide what’s most important to you — by Joan Kofodimos (Jossey-Bass, 1993) determine your life goals. Then look at 800-956 7739; and “Body and Soul," by what achieving those goals will require. Anita Roddick (Crown Publ., 1991) The experts recommend that you be 800-726-0600. absolutely honest with yourself about Another good resource is the Families what it will take to accomplish your and Work Institute, 330 Seventh Ave. goals. Next, talk about this with your New York, NY 10001, 212-465-2044 spouse, family, and the person you're www.familiesandwork.org for a providing care for. Understanding the variety of reports, guides, etc. on work demands you face is an important balancing your life, career, and part for all of them. Next, discuss your caregiving. situation with your boss (if you have your own company, that may mean yourself!) Letting your supervisor know Options For Senior that you have caregiving demands is Living the first step in creating some workable strategies for compromise on everyone's part. It's often easier if you can develop Aging in Your Own Home some creative alternatives that will The alternatives for senior living are allow you to make the best choices — not limited to living at home or in a for example, is there some way to work nursing home. Rather they incorporate -13- what is called “the continuum of care." * Assistive Devices for the home are This continuum encompasses totally probably your first consideration. independent living at home, through Mobility devices are the more obvious assisted living in a variety of retirement first kinds of assistance that a frail residential settings, to the most intense older person needs. Everyone is familiar nursing-related care provided in with canes, walkers, and wheelchairs — nursing homes. Today, between in- although even these come with a home services and less intense care variety of options and prices. Each facilities such as assisted living room in your relative's apartment can facilities, caregivers and care recipients be re-fitted or re-furnished with have a wider variety of appropriate products and devices to increase safety, choices for care than ever before. convenience and independence — from rubber-like non-slip doorknobs, to Research shows that staying at home is reachers to pick objects up from the the living arrangement clearly preferred floor without having to bend down, to by an increasing number of today's pneumatic living room chairs that older men and women. A recent survey automatically rise to help an older by AARP, for example, found that 85% person get out of the chair. of older respondents prefer to remain in their own homes if they need care. Over The federal government's National the past two decades the support for Institute on Disability and aging in place in one's own home have Rehabilitation Research has developed improved dramatically. Consider two an enormous database of assistive sets of factors and consumer decisions devices and rehabilitative products. The as you evaluate the desirability and ABLEDATA Database includes listings feasibility of providing care for your of over 17,000 products currently elder in her or his own home (or in available from 3,000 different yours). The first factors concern manufacturers and distributors. Call physical changes in the home itself — 1-800-227-0216 (8455 Colesville Rd., home modifications, assistive and Silver Spring, MD 20910 supportive devices that can be www.abledata.com) to get on the purchased or rented, safety, and Institute's mailing list and to get access emergency response systems. The to the database. Each entry includes a second set of factors and decisions description of the product, its retail to consider concerns services. “Home price (and the date the price was care" is the general phrase describing identified), the manufacturer's name bringing such help as nurses, (and address and telephone number), companions, transportation providers, availability (manufacturer only or also and home care and personal care aides local distributors), and any “special" into your elder's home. These are comments such as “assembly required" discussed in the following section. or “Medicare reimbursable.”

-14- * Home Modification. Declines in Andrus Gerontology Center of the physical strength, vision, and hearing University of Southern California: as well as diseases such as arthritis can www.usc.edu/dept/gero/hmap/library/drhome. often be dealt with by modifications in the home. Some are more easy to * A Personal Emergency Response accomplish than others; some are System (PERS) is an electronic device costly. All such changes should be connected to the home telephone that discussed with the older person who automatically summons help in an will use them and with others who may emergency. A PERS consists of a small in the future be involved personally or radio transmitter usually worn as a financially in caregiving. Check with necklace or bracelet so the user can an occupational therapist for help in press it wherever he or she is (in bed, identifying which modifications are on the floor, in the bathroom) when he needed. or she falls or has an emergency. When the radio transmitter is activated, it ADL (Activities of Daily Living) studies sends a signal to a telephone response show that bathing, toileting, and eating center, even if the phone itself is off the are the activities that most clearly hook. The response center can be a signal declines in an older person's local PERS system, the local hospital, or capacity to live independently. 911. Traditional bath tubs can be replaced by tubs with lower sides or fitted with Dealers ranging from small companies grab bars. Doorknobs, faucets, and to the regional phone companies offer cabinet handles can be replaced with both the PERS equipment and the larger lever-type handles, rather than response center response services. round knobs, for easier and safer use by Hospitals and local aging or social elderly hands. Household lighting can services agencies in your community be made brighter (but not glaring) may act as “middlemen" in linking you throughout the home, sometimes simply to preferred dealers. Monthly rental by increasing light bulb wattage or by including both the in-home equipment installing different kinds of lamps and and the response center service can lighting. Where mobility has declined, range from $15 to $50 per month. The ramps and even elevators or banister- cost is generally not Medicare chair lifts could be installed, among reimbursable, but some private other things. insurance may pay for all or part of the system. A comprehensive and readable source of very practical information on this The best place to start your range of home modifications is investigation is the comprehensive available in The Do-able Renewable report prepared by the Federal Trade Home by AARP. The book is available Commission called simply “Personal from AARP or from the website of the Emergency Response Systems.” Write to -15- the FTC Office of Consumer and programs or simply home safety Business Education (Bureau of programs. Books, pamphlets, and other Consumer Protection), 600 Pennsylvania easy to use publications are available Ave, NW, Washington, D.C. 20580; call available from these community them 202-326-3650, or read the report on agencies or from AARP. www.ftc.gov/bcp/conline/pubs/ services/pers.htm. The Agenet website, www.agenet.com, offers a comprehensive home safety In addition, AARP has prepared a checklist for use by caregivers and eld- consumer guide to PERS systems that ers to assess possible hazards within the summarizes the characteristics of home. The 60 very specific twenty different systems. Request questions focus your attention on Product Report: PERS (Report specific parts of the home on a room by #D12905). room basis.

* Home Safety. When you and your AARP's Connections for Independent elder have concluded that living at Living is a continually updated local home is both desirable and feasible, it is community program that helps older essential that you do a comprehensive people remain independent through the home safety evaluation. Evaluate your assistance of AARP members as home for slippery floors, glaring volunteers. Check the AARP website for lighting, sharp table corners, dates and addresses where local home unbalanced tables, or exposed electric safety workshops and information cords. Aside from the home itself, the exchanges are currently scheduled: older resident's health and mobility add www.aarp.org/programs/connect/home. another layer of safety planning html. concerns. The spacing of furniture, doorways, and appliances need to be Bringing Aging Services examined, along with the safe location and spacing of tables, chairs, cabinets into the Home and appliances. Use the five basic Finding and arranging for home care, Activities of Daily Living as another which typically focuses on Activities of way of looking for “safety violations" — Daily Living rather than health and can your elder eat, bathe, go to the medical services, and then monitoring bathroom, get dressed, and move from the care is an essential service for an his or her bed to a chair safely? elder remaining at home. Most communities have services available to Some area agencies on aging, county help older people remain independent health programs, hospitals, HMOs, and or cared for at home (in their own senior centers provide outreach home or the home of a relative). The in-home safety evaluation services. National Institute on Aging identifies They may be called Falls Prevention the following services: homemaker/ -16- home health aide services, home- * Will there be just one provider or will delivered meals, transportation and it take several different services — e.g., escort services, household workers, a meals, housekeeping, transportation, Friendly Visitors Program, adult day everyday assistance inside the care programs, respite care for apartment, taking medications, physical caregivers, and emergency medical therapy? Who will coordinate these systems. Some of these support several services? services and others are funded by state * If a home care worker is delayed or and county programs or offered by doesn't show up, what is the back-up church or volunteer groups. Eligibility system? Who will monitor the daily criteria and cost vary greatly by activities of the home care workers, and location, and you will want to function who is responsible for finding the as your older relative's advocate in substitutes? identifying and arranging services from the state or local agencies. If staying in his or her own home environment is your elder's decision, Home care is emerging as a specialized then home care may be available, along service industry with much variation in with assistance in arranging for it. the scope of services, quality of service Several national temporary employment and cost. Home care workers includes companies have divisions that specialize visiting nurses, physical therapists, in home care, and hospital discharge occupational therapists, and home planners or geriatric care managers can health aides, as well as non-medical also be particularly helpful in making personnel who serve as companions, home-care arrangements. There are homemakers, personal care attendants, also many community-based local and escort/transportation providers. providers offering in-home services, such as “Meals on Wheels" which In addition to the fundamental provides low-cost nutritious meals for questions of quality, availability, and those who cannot get out to shop or affordability of the service, home care dine. Try the Eldercare Locator (800- requires the caregiver to be an advocate 677-1116) or your local telephone book for the older person's services: “Blue Pages" for the services. * Who will find, screen, and recruit the home care service providers? FURTHER INFORMATION: Ada Romaine-Davis, Jennifer Boodas, * Who is responsible for paying the and Ayelife Lenihan (editors), home care bills? If it is to be the older Encyclopedia of Home Care for the person him/herself, will the medical Elderly. Greenwood Publishing Group problems that initiated the reason for (1995). the care prevent effective supervision of the home care providers? D. Helen Susik, Hiring Home Caregivers—The Family Guide to -17- In-Home Eldercare. American Source health services are available. The older Books, San Luis Obispo, CA (1995). person who lives at home can also have the experience of meals, recreation, The National Association for Home Care some therapy and medical services in (NAHC) is a trade association that an organized and supervised represents 6,000 home care agencies, environment. Simultaneously, the adult hospices, and home care aide day center offers a reprieve to the organizations. NAHC provides caregiver. The time off offered by the consumers with information on how to adult day center may well spell the define their need for home care difference between continued at-home assistance, how to judge provider residence and a move to a nursing qualifications, how to locate home care home or other senior living agencies in the community, and how to accommodation. finance home care. NAHC, 228 Seventh Street, SE, Washington, DC 20003, (202) Many adult day care centers include a 547-7424. www.nahc.org and nurse or other health professional who www.homecareuniversity.org. will perform various screening services as needed. Some adult day centers are When home care needs extend beyond specially designed to work with Activities of Daily Living to require Alzheimer's patients. additional medical and pharmaceutical services, a visiting nurse may be Consumers can locate adult day services necessary. Visiting Nurse Associations in their community a number of ways, (VNA), with 513 locations in 40 states, including: are community-based and community- - The federal government's Eldercare supported nonprofit home health care Locator (800-677-1116) providers. In addition to general information about services, the VNA - The local Yellow Pages, under “adult website offers a map-based locator day care," “aging services," “senior service: 11 Beacon Street, Suite 910, services," etc. Boston, MA 02108. Tel: 617-523-4042. - Through the Information & Referral www.vnaa.org. desk at your local Area Agency on Aging (call 800-677-1116) or look in Adult Day Services the Blue Pages section of the phone A relatively new kind of care as an book to find the local area agency. extension of home care, known as Local senior centers can also Adult Day Care (or Adult Day Services), recommend adult daycenters. is becoming common. In this kind of - The National Adult Day Services care, your elder attends a community Association (NADSA) is the national facility during the day, where an array organization for the approximately of social, recreational, and at some sites 4,000 local adult day service centers -18- throughout the US; it also helps bathing, eating, and transportation? consumers locate appropriate services. * Does a resident have to be NADSA/NCOA, 409 Third Street, SW, ambulatory or are walkers and Washington, DC 20024. 800-424-9046. wheelchairs allowed? www.ncoa.org/nadsa. * Are there additional costs if meals Assisted Living must be delivered to the apartment? There are two basic models for Assisted FURTHER INFORMATION: Living residence and assistive services: An excellent place to start your search the Rental Model (which follows a hotel is with Assisted Living Housing for the or apartment way of doing business) Elderly — Design Innovations from the and the Condo Model. The rental United States and Europe (1994) by model operates on a month-to-month Victor Regnier. basis, often with a yearly lease. In the condo model, you purchase the The American Association for Homes residence, usually by making a and Services for the Aging (AAHSA) is substantial down payment (as little as the association of non-profit senior $50,000 or as much as $350,000) and housing facilities, including nursing then have a monthly maintenance fee. homes, CCRCS, and assisted living There are also variations in the amount residences. AAHSA offers a directory of of assistance you get for the monthly its member facilities to help consumers fee. Assisted living usually includes find appropriate residences, and meals in a dining room setting, house- distributes a series of booklets on how keeping services, and a range of health to evaluate and choose a nursing home, and personal assistance depending on a CCRC, an assisted living place, or the older person's needs. home care provider. AASHA, 901 E St. NW, Suite 500, Washington, DC 20004- If you and your relative are considering 2011. 202-783-2242. www.aahsa.org. assisted living, consumer advocates suggest the following considerations: The American Health Care Association (AHCA) is a membership association of * For what time period does the facility 12,000 senior housing facilities including guarantee care? nursing homes, CCRCs, and assisted * Is it certified by the Continuing Care living facilities, most of which are in Accreditation Committee and a state the proprietary for-profit sector, but or local agency? includes some non-profits as well. AHCA provides substantial consumer * Is there special care for Alzheimer's information:. 1201 L Street, NW, patients? Washington, DC 20005, 202-842-4444. www.ahca.org. * What specific services are supplied under the categories of grooming,

-19- The Assisted Living Federation of incorrectly that Medicare pays for America (ALFA), the professional chronic nursing home utilization. Many association whose members are solely people also believe that Medicare pays assisted living facilities, provides for long term chronic care services in information and criteria useful in the home. It does not. choosing the right facility. In addition, the organization's website offers a state Over the past decade, with increasing by state listing of facilities, searchable longevity and therefore an increasing by county and city; each entry includes need for chronic longer-term care, a street map of the facility's location. Assisted Living has grown dramatically. 10300 Eaton Place, Suite 400, Fairfax, As described in the previous section, VA 22030. 703-691-8100. this relatively new kind of senior www.alfa.org. housing is generally defined as independent living, but with various Nursing Homes vs. kinds (and levels) of assistance, for Assisted Living, and older persons who do not need the daily other Housing/ nursing care. But caution is needed. Assisted living can range from large Care Options corporate chains to “mom and pop" Because Nursing Homes — as a general businesses in which a few rooms in an category — are used both for the post- old large house are made available on a hospital acute care and short-term room-and-board basis with relatively rehabilitative care of older patients, the little assistance. confusion between Medicare and Medicaid as payment for “nursing care" Continuing Care Retirement persists despite thirty years of public Communities (CCRCs) offer independent education. Medicare does NOT pay for living, assisted living (with some chronic nursing home care. The fact assistance in everyday activities), and a that Medicare does pay for both an nursing home all on the same campus, older person's hip surgery and his/her so that the older person can receive short-term rehabilitative services more intensive care as he or she required thereafter (which may be requires it. provided at a nursing home) creates confusion. Finding the Right Senior The confusion over the two kinds of Housing nursing home stays further complicates When you are evaluating and selecting public understanding of Medicare a senior housing facility with a relative versus Medicaid. Since Medicare pays or friend, you should visit and compare only for short-term post-hospitalization several facilities, according to National recuperation in skilled nursing facilities Citizens' Coalition for Nursing Home (nonetheless labeled as “Nursing Home" Reform. Visit each one several times, at stays), the public continues to perceive different times of the day, and use all of -20- your common senses, including sight 202-332-2275 1424 16th St., Ste. 202, and smell, to judge factors on whether Washington, DC 20036 www.nccnhr.org. residents are properly dressed, the food is appetizing, and the staff responds to The Nursing Home Information Service patients' calls for assistance. is an information and referral center for consumers of long-term care and their To summarize: families, friends, and advocates, * Residential care facilities provide including information on nursing room and board and may offer social, homes and alternative community and recreational, and spiritual programs. health services. Write to the National Council of Senior Citizens, Nursing * Continuing care retirement Home Information Service, National communities (CCRC) start with Senior Education and Research Center, independent living and progress to Inc., 8403 Colesville Rd., Ste. 1200, more intensive care services, Silver Spring, MD 20910 (301-578- including room and board, personal 8800) www.ncscinc.org. and health care, and social activities. * Assisted living facilities include AARP can provide general information retirement homes and board and care on long-term care for consumers. For a homes. Services differ from location list of their publications, write to the to location but usually include meals, AARP Health Advocacy Services, 601 E recreation, security, and assistance St., NW., Washington, DC 20049 (202- with Activities of Daily Living as 434-2277). Their website, www.aarp.org, noted earlier, and medication also provides useful introductions to the management. issue.

* Skilled nursing facilities offer services AAHSA, in conjunction with AARP, has for those who need 24-hour medical information about continuing care care and supervision. Emphasis is retirement communities. Write to the on medical care with rehabilitative AARP/Housing Activities (at the address therapy to maintain or improve above). abilities. Call the Eldercare Locator (800-677- Reverse Mortgages 1116) for local resources in each of For older people who have not these areas. purchased long-term care insurance and who are between the extremes of The National Citizens' Coalition for self-insuring wealth and Medicaid Nursing Home Reform helps local eligibility, an alternative source of organizations work for nursing home financing long-term care may be the reform and improvements in long-term equity in the older person's home. care. To learn more about the Coalition Home equity is the single largest source and for a list of consumer publications: of wealth of older people in the United -21- States today. A Reverse Mortgage, a and returns, and a detailed appendix on loan given by a bank or other lending where to find lenders in your state that institution using the paid-up value of offer reverse mortgages. 7373 147th the home as collateral, might be used to Street West, Apple Valley, MN 55124, pay for medical and home care bills. 612-953-4474. www.reverse.org.

FURTHER INFORMATION: AARP administers its AARP Home Reverse mortgages are offered by some Equity Information Center as a focal (but not all) retail banks, S&Ls, and point for consumer-directed other banking organizations. First check information on reverse mortgages. The with your local bank to see if they offer Center provides a range of books, reverse mortgages, and with what terms pamphlets, and videotapes on such and rules. subjects as federally-insured mortgages, cost and eligibility issues, different Look for Your New Retirement Nest ways of receiving the cash from home Egg: A Consumer Guide to the New equity, and how to select a reverse Reverse Mortgages (1996) by the mortgage counselor and lender. Contact National Center for Home Equity the Home Equity Information Center at Conversion. This book describes in great the AARP Foundation, 601 E Street NW, detail the variations in reverse Washington, DC 20049. The website mortgage plans sanctioned by recent address, part of the AARP's Webplace, federal law, how to calculate your costs is www.aarp.org/hecc.

-22- Part Two—Planning forYourOwnLong-Term Care You’ve learned a great deal about As you plan for the future payment of caregiving in Part One. This second part health costs, be sure you know where of the guide was developed to help the necessary health insurance will caregivers and prospective caregivers come from — and how it will be paid start planning for their own long-term for. This is especially true if you are care. It includes descriptions of some considering early retirement and, like of the important issues and lists of most people, the necessary health resources for more information. insurance is connected to employment. HCFA (the U.S. Health Care Financing General Health and Administration), the department that Finance administers Medicare, provides three sources of up-to-date information not Medicare vs. Social only on Medicare itself, but guides on Security Eligibility purchasing private supplemental health insurance: 1-800-MEDICARE. The 1999 While most people know that Medicare Guide to Health Insurance for People is the national health insurance for with Medicare. www.medicare.gov. people over 65 in the United States, many Americans do not realize that If you want or need to purchase health Medicare eligibility does not begin until insurance on your own, consider the age 65, even if you choose early Social following: Security retirement at age 62 or 63. A Ask your former employer about your recent national survey found that almost half of American adults falsely rights under the Comprehensive believe that you qualify for Medicare Omnibus Budget Reconciliation Act whenever you start to receive Social (COBRA) legislation, which often allows Security. former employees to purchase the same health insurance plan that they had Similarly, less than two-thirds of when they were working (the number of Americans correctly know that even if months varies depending on the family you have a private pension from an and employment circumstances.) employer, your employer is not required to provide paid or subsidized retiree Group health insurance is almost health insurance. In planning for always less expensive than individual yourself, be sure to check with the insurance, so check with all the groups, appropriate employer personnel office teams, social clubs, professional, or the employee assistance program, fraternal, and hobby organizations you read the fine print in retirement benefits or your family members belong to, and health insurance brochures, and ask because many offer group health if any retiree health insurance that is insurance as a benefit of membership. offered can change or is likely to change in cost and coverage in the next few years. -23- Also, keep in mind that Medicare and Handbook from the: Social Security Social Security have waiting periods Administration, Office of Public involved in qualifying for benefits, so Inquiries 6401 Security Blvd., Baltimore, apply for these benefits several months MD 21235(800-772-1213). Also look at before you plan to retire. their website at www.ssa.gov. Remember that disability benefits may have a long waiting period, so apply Disability Insurance vs. early. Life Insurance Check with your employer to learn Most employees have some kind of what kind of disability income disability insurance through their insurance you have through your job; employment primarily to replace part of in many states this is required their income if they are no longer able insurance. You should get answers to to work. For middle-agers, disability these questions as part of your general income insurance is at least as retirement planning, — before the important as life insurance because a benefit might be needed. middle-ager is more likely to become disabled than die. Be sure to understand Life Insurance what kind and amount of disability insurance you have, how it works, and Most families need some life insurance. how much it would cost to purchase You should consider the kind and more. amount in terms of the basic purpose life insurance is intended to serve. In In addition to its basic purpose in most cases, life insurance is intended to providing retirement income, Social provide cash to replace the income a Security is also a basic disability family loses due to the death of the income insurance policy whose benefits person earning the income. In the case are available to workers at any age, not of the death of a non-working spouse, just 62 or 65, depending on the nature the cost of providing child care may of the disability. However, Social also need to be covered. Consequently, Security disability benefits are not easy in most younger households, both to qualify for since disability means husband and wife should consider you are so severely impaired, physically having life insurance. or mentally, that you cannot perform any substitute gainful work. The When you shop for insurance, there are impairment must be expected to last at four key ideas to keep in mind — least 12 months or to result in early (1) Seriously consider whether you death. To learn more about Social really need life insurance, and if so, Security Disability Insurance, obtain a how much. copy of the most current Social Security (2) Consider which type of insurance is

-24- right for you: term life insurance, whole life, or universal life insurance. Basic Financial 3) Understand the options, costs, and Planning benefits that are part of the term life insurance “product." Financial Planning (4) Shop around, look at price, consider Stages to Know and company quality as well as product Understand features. The title of this section is financial planning and not “retirement planning,” Consumer Reports, July 1998 (available for two reasons. First, the line between at most libraries), offers an excellent work and retirement is not as clear-cut overview of the differences between as it used to be: an increasing number term life insurance and whole or of “young-old" Americans now choose universal life insurance. The article also partial, phased, or delayed retirement. provides a calculator process by which Second, there are several different ages you can estimate your own need for life at which you can begin to get various insurance. This decision should be made pension and retirement benefits, and in the context of your overall financial you don't have to stop working to get planning; consult with financial the money. Therefore, your decision professionals, if desired. about whether to work or retire should be made in the context of the larger Note: the following are examples of issue of your financial planning for insurance information services, not your later years. recommendations: www.termcomparison.com * Social Security. The “traditional" Or: 1-888-825-8762 retirement age is 65; this is generally the age at which you get “full benefits". www.quotesmith.com You can retire and get Social Security Or: 1-800-556-9393 at any time between 62 and 65, but www.insweb.com/ins101 your monthly benefit will be reduced www.quicken.com/insurance includes based on the number of months prior to an elaborate life insurance section, age 65, and this will be a lifelong including definitions, discussion of how reduction. You also have to make a life insurance fits into financial formal application for Social Security planning, and access to costs and payments at least 60 days before you quotes. need to take them. Documents such as proof of birth, citizenship, or marriage are needed.

* Qualified Retirement Plans. In some (such as IRAs or 401[k] plans) you can

-25- 1 begin to withdraw funds at age 59 /2, (#05-10035, February 1999). To better even if you don’t stop working. But understand the benefits and procedures note that (a) you are not required to once you have started receiving Social withdraw funds at this age, and (b) if Security benefits: What You Need to you withdraw funds earlier than age Know When You Get Retirement or 1 59 /2, you will incur a 10% tax penalty Survivors Benefits (#05-10077, January in addition to any income taxes you 1999). may owe. Also, if you are still working 1 at age 59 /2, withdrawals will depend Defined Benefit vs. on plan provisions. You must begin taking a “minimum withdrawal” from Defined Contribution IRA accounts no later than April 1st Pensions following the calendar year in which 1 you reach 70 /2, even if you continue There are two basic types of pension to work. If withdrawals are not started plans: Defined Benefit plans and 1 by 70 /2 you will incur a penalty. Defined Contribution plans.

FURTHER INFORMATION: A defined benefit pension is the Call the Social Security Administration “traditional" employer-provided or at 1-800-772-1213 to find out more union-provided pension: what is about the age and eligibility rules for defined is the dollar amount of the early and “normal” (currently age 65) benefit you get when you retire (based on such things as years of employment retirement procedures. Its website, and amount of regular income). The www.ssa.gov, provides an automated financial risk is shouldered by the local office locator. When you type in pension plan which is obligated to your zip code, the website returns the make sure that the cash is available to address, the hours the office is open, a pay the promised benefit. street map of the location, and written driving instructions. In the defined contribution pension, the only amount defined in advance is the To find out what your Social Security amount contributed into the pension, retirement benefit will be when you either by you or your employer (or a hope to retire, request your Personal combination of both). There is no Earnings and Benefits Estimate guarantee of how much cash these Statement — your “PEBES" — from Keogh, IRA, or 401(k) accounts will be Social Security; ask for a PEBES request worth years later when you retire. And form (#SSA-7004) by calling your local while employers typically offer SSA office, or from the SSA website. investment advice and a variety of Obtain a copy of either or both of the investment options, the financial risk is following free SSA booklets— When on your shoulders, because only the planning for your future retirement: amount of the contribution is Social Security Retirement Benefits guaranteed. If your pension is a defined -26- contribution plan, then there is less The most immediate and relevant regulation to protect you, and you have source of pension and pension rights to know more about your own financial information is your employer. Make an and investment responsibilities. appointment with the Personnel, Benefits, Human Resources department FURTHER INFORMATION: or employee assistance program. Find Your local library should have the out how your employer's pension following useful books that discuss system works not only in terms of pensions: contributing and investing money, but the rules and regulations about James E. Birren (editor), Encyclopedia receiving the funds in the form of a of Gerontology: Age, Aging, and the pension. Aged. Academic Press (1996). George L. Maddox (editor), Pension Rights of Spouses Encyclopedia of Aging: A and Surviving Spouses Comprehensive Resource in Gerontology and Geriatrics (2nd Ed.). The 1974 ERISA pension law requires Springer Publishing Co. (1996). that husband and wife at least discuss what the employee will do when he (or Lois A. Vitt and Jurg K. Siegenthaler she) elects to receive his (or her) (editors), Encyclopedia of Financial pension. For example, a retired husband Gerontology. Greenwood Publishing can choose to receive a reduced (1996). amount, say 80% of his pension for the rest of his life instead of 100%, so If you have questions about your that his widow will receive a specified pension rights, or want to report a amount until she dies. Each has to sign pension rights violation, contact the an ERISA form saying that they have U.S. Department of Labor's Pension and discussed the options. Welfare Benefits Administration (PWBA), 200 Constitution Ave., NW The strategy and calculations are based Washington, DC 20210. Their general on such things as his and her health publications request number is 800- status, how much income they estimate 998-7542, and their Technical they will need and the full profile of Assistance and Inquiries number is 202- where that income will come from. 219-8776. In addition to its national offices in Washington, DC, the PWBA Retirement, Early has 15 Regional and District Offices around the country. Call the main 800 Retirement, and Health number to find your closest regional Insurance office or visit their website at www.dol.gov/dol/pwba/public/contacts. In addition to all the financial calculations you do in planning for

-27- retirement, don't forget about the The National Center on Women and availability and the cost of health Aging at Brandeis University serves as insurance. Many working-age a clearinghouse of current information individuals get their health insurance on financial issues for women and through their workplace. So, as you get aging more generally. National Center closer to retirement, be sure that you on Women and Aging, Heller School, know where your health insurance will MS035, Brandeis University, Waltham, come from. Remember that a person is MA 02454-9110. 800-929-1995 not eligible for Medicare until age 65 — www.brandeis.edu/heller/national/ind.html. which is separate from other Social Security retirement ages and benefits. Saving and Investing FURTHER INFORMATION: for "Retirement" To better understand the protections Defined contribution pension plans and which ERISA gives to women and self-directed Individual Retirement surviving spouses, contact the Accounts put more financial and Department of Labor to request a copy investment responsibility on the of their “Know and Do" booklet. The shoulders of working men and women Pension and Welfare Benefits than used to be the case. Because of the Administration (PWBA) of the dramatic increase in the kinds and Department of Labor, mentioned earlier, sources of investment and savings advice is the contact place for this publication: to help you, start with the following 200 Constitution Ave., NW Washington, basic principles as an introductory set DC 20210. 800-998-7542. of suggestions and cautions.

The non-governmental Pension Rights If you're fairly new to pensions and Center in Washington, DC, operates a investments, a good place to start is Legal Outreach Program to protect the with the series of books available in pension rights of workers, retirees, and many bookstores these days, the their families. 1140 19th St., NW, Ste. “Dummies" Books. Personal Finance for 602, Washington, DC 20036 (202) 296- Dummies, for example, makes the 3776. important point that personal finance is NOT simply a question of investments, The Older Women's League is especially but involves a broader range of concerned with the pension rights of information including saving, budgeting, spouses and widows: 666 Eleventh mortgages, insurance, and records- Street, NW, Suite 700, Washington, DC keeping. After this introductory volume, 20001. OWL has local and state you may want to read Investing for chapters throughout the country; to Dummies and Mutual Funds for locate a chapter near you call: 1-800- Dummies. 825-3695.

-28- Some tips for saving and “investing" in The finance section of USA Today’s retirement: website, www.usatoday.com, includes no fewer than 100 different financial _ If you have a defined contribution calculators pertaining to budgeting, pension such as a 401 (k) plan, and if insurance, mortgages, stocks and your employer matches all or part of mutual funds purchasing — and your contribution, then be sure you retirement planning. A similar selection contribute the maximum amount is available from Kiplinger's personal allowed. finance magazine at www.kiplingers.com. - Pension rules and eligibility have changed dramatically over the past few years. Even if you and/or your spouse Long-Term Care have a pension plan at work, you may Insurance: The Basics also be eligible to open a traditional IRA (although you may not be able to Although long-term care insurance has deduct your contributions) or a Roth been around for about twenty-five IRA. years or so, the nature of the policies, the kinds of features they include, and FOR MORE INFORMATION their costs have changed and evolved The Internet offers a virtual cornucopia dramatically. It is appropriate to of educational material, financial consider this form of financial opinions and, planning tools. Your first protection, but there are many visits should be to one or more of the questions and issues that you should several mass media “household names” explore. Keep in mind that this is a that have created excellent (and free) long-term investment. That is, you are financial websites (e.g., www.cnbc.com, purchasing something now that may www.asec.org, www.cnnfn.com, and not pay a benefit for 20 or even 30 www.washingtonpost.com). Many years. Or, like fire insurance on your financial services and mutual fund home, maybe it won't pay off at all if companies also offer valuable financial you die without needing long-term planning and educational websites. care. Also, you may want to check general “financial data” websites (e.g., Here are some basic questions to ask www.quicken.com and www.bloomberg.com) about any long-term care (LTC) that provide historical as well as current insurance policy you are considering: historical mutual fund and stock price - What kinds of long-term care services information and graphs, company and are covered by the policy? It should fund profiles, investment strategies, cover home care as well as nursing daily financial news, and even free home care. personal portfolio management tools. - How does the policy typically pay a benefit? Does it provide a specific, fixed

-29- number of dollars per day, e.g., $125 services (e.g., medicines or physical per day, or does it provide a percentage therapy)? of the actual cost charged by the - What about inflation? Does the policy nursing home (or other long-term care include, or offer, protection against the service)? rising costs of nursing home care? How - Whether dollars per day or percentage, much does the “inflation protection is there a difference in the nursing rider" to the policy cost? Is the inflation home benefit compared to the home protection automatically renewed each care benefit? You will have maximum year? flexibility if the policy pays, for - Are there rebates and returns? What example, $150/day for nursing home happens if you decide not to continue care or $150/day for home care services. with the policy? Is there a short period - What are the “triggers" for receiving (e.g., 30 days) during which you can the long-term care benefits from the change your mind and cancel the policy? Will a signed statement from contract? What happens if you decide your doctor be sufficient or does it you don’t want the policy after several require certification from the insurance years; is there any rebate? Is there any company's medical staff? Will two cash value build-up in the policy that non-medical Activities of Daily Living you can borrow or receive? Can the needs be sufficient to trigger payment policy be converted to other kinds of of benefits? Is the number or long-term care insurance or other kinds combination of ADLs such that of health insurance? triggering is more than likely? Ultimately, the important thing to - What are the deductibles, co-payments, remember is: generally, the younger and waiting periods in the policy? Most you are at the time of purchase, the LTC policies have a 30-day to 90-day lower the premium. Willingness to take waiting period. Like the $500 deductible risk is a large part of the personal and in automobile collision insurance, if family decision on long-term care you are willing to pay for the first insurance. Are you willing to risk that month or two of care, the policy you will not have substantial long-term premiums will be lower. care expenses in the next ten years? - How will the long-term care insurance And are you willing to risk the “connect" or “integrate" with Medicare possibility of not being able to qualify and other health insurance you may for long-term care insurance ten years have? Are there elements of the nursing from now? home care or home care costs that will be paid by other insurance? Conversely, FOR MORE INFORMATION— does the long-term care policy assume Information can be found in the that other sources will pay for certain October 1997 Consumer Reports Special Report on long-term care insurance, -30- “How Will You Pay for Your Old Age?" retirement account before 591/2 will cost (available in most libraries.) The a 10% penalty in addition to any comprehensive 13-page article describes income taxes you owe). But because the basic elements of an LTC insurance these funds were tax deferred for policy, demonstrates how you can judge retirement income purposes, you may the merits of a policy, discusses the have to start withdrawing minimum 1 “strategy" of private insurance versus amounts at least by age 70 /2 even if Medicaid spend-down requirements, you don't really need the money, and indicates how you should prepare to even if you are still working. talk to an insurance agent, and provides company-specific descriptions and Having a strategy for making these quality ratings. withdrawals also involves understanding the required amounts of One of the most comprehensive sources the “minimum distributions," how to for consumer-accurate and consumer- calculate your longevity at the time you friendly information on long-term care begin the withdrawals, whom you have insurance is the non-profit United named as a beneficiary and how old Seniors Health Cooperative, 409 Third that person is, and personal choices St., SW, 2nd Fl., Washington, DC concerning how quickly or slowly you 20024; (202) 479-6692. USHC has want to withdraw the money from the produced Long-term Care Planning: A accounts. Dollar and Sense Guide (about $18). www.ushc-online.org. Information on topics related to “harvesting" regularly appear in the Harvesting Your following places: Retirement Investments Most local newspapers include a weekly column on personal finance. Watch for “Harvesting" here simply refers to articles on retirement planning that actions you can take or should avoid specifically discuss ways to withdraw taking typically before retirement, when money from retirement accounts. you are in your forties, fifties, and sixties, in order to get the most out of The second section of the Wall Street your retirement-oriented investments. Journal regularly includes personal finance articles under the titles “Your There are several federal tax rules Money Matters,” and “Getting Started.” regarding when you may withdraw The www.usatoday.com website money from your retirement accounts mentioned earlier includes both current and when you must withdraw funds and past articles on a broad range of from those accounts. For example, you retirement and investment subjects may begin to withdraw money from relevant to the idea and strategy of 1 your IRA at age 59 /2 but you don't “harvesting." have to (taking money out of a -31- AARP (www.aarp.org) and the National Here are a few basic principles: Council on the Aging (www.ncoa.org) have websites that include information (1) Trust: the most fundamental issue is on retirement planning and regulations. that you trust the advisor. How he or she creates that trust is a complex issue. The International Society on Retirement One thing you can do is to be informed Planning (www.isrp.org) offers and be prepared. The more you learn in information and books on general advance, the better you will be able to financial life planning. ask questions, and then evaluate and Choosing and Using trust the answers and the advisor. Professional Financial (2) Know what you are buying: If the financial planner offers “free advice" on Advisors a continuing basis, be skeptical. That is, A professional financial planner can if the planner's income is based on the assist you with asset management and commissions he is making on the financial planning. For example, a advice that is “freely" given, then the financial planner can help you prepare advice is not so free after all. Typically, a financial plan that anticipates future choose a “fee-only” advisor rather than expenses such as long-term care. With a “commission-based” advisor. your planner, you can determine if you (3) Interview several advisors; ask your should consider long-term care friends; check with local registries for insurance. Such a professional can also complaints. Ask if he or she makes consider tax issues and help guide you commissions on the investments, funds, in the best ways to pass on your assets stocks, policies recommended and if through estate and trust planning. you are free to buy things not on the advisor's "preferred lists"? People who call themselves “financial planners" really offer different kinds of You may want to look for CFP (Certified services, from basic investment advice, Financial Planner) or ChFC (Chartered to how to structure investments for Financial Consultant) designations retirement, to tax planning and estate when considering a financial planner. planning advice. There are also several different professional associations of financial planners, and several different 1 National Center for Health Statistics, 1992. “designations" or certificates — that 2 Family Caregiving in the U.S., A National Survey. may either help or confuse you. National Alliance for Caregiving and AARP. June 1997.

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American Society on Aging Bell Atlantic Department of Veteran Affairs Glaxo Wellcome MetLife Mature Market Group National Association of Area Agencies on Aging Pfizer Inc. AARP The ALS Association American Academy of Home Care Physicians American Association of Geriatric Psychiatry American Geriatrics Society Assisted Living Federation of America Children of Aging Parents Gray Panthers National Association of Professional Geriatric Care Managers National Association of Social Workers National Council on Aging Society for Healthcare Consumer Advocacy Society for Social Work Leadership in Healthcare United Seniors Health Cooperative Well Spouse Foundation This guide is intended to raise important issues and provide the reader with some background information on the topics it covers. It must not be construed as providing legal, financial, medical or other advice.

This publication is supported by a grant from The Equitable Foundation, the philanthropic arm of The Equitable Life Assurance Society of the U.S. Equitable helps people plan for the future, enhance the quality of their lives and manage their responsibilities toward those who depend on them.

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