Navigating Your Later Years For Dummies E-Book

Carol Levine

• Herausgeber: John Wiley & Sons
• Kategorie: Bildung
• Sprache: Englisch

Seitenzahl: 665

Veröffentlichungsjahr: 2018

Beschreibung

Long-Term Care: Planning for Finance, Medical, and Living Expenses We're living exciting bonus years--decades that our parents and grandparents didn't have. But how to navigate this complex terrain? Questions abound around long-term care planning: Where to live? How to get the best medical care? What to do about advance directives, wills and trusts, and estate planning? And how to pay for it all after you retire? Getting accurate information and answers wasn't easy. Until now. AARP's Navigating Your Later Years For Dummies helps you and your family understand the growing range of opportunities. Even more importantly, it helps you chart the next steps to live the life you choose, as independently as you choose, no matter your specific circumstances and needs. This book: * Covers home modifications so that you can stay at home safely for as long as you like * Lays out the opportunities and costs associated with independent living, assisted living and other options * Gives you a range of driving and transportation alternatives * Helps you navigate the healthcare system, Medicare, and Medicaid * Sorts out the various sources of care at home * Reviews the legal documents you should prepare and update * Helps you determine whether you need long-term care insurance * Gives you guidance on talking with your family about sensitive issues, including your wishes as you age With this new comprehensive book, you'll get the credible information and resources you need to face the challenges facing us as we live the life we choose. Here, finally, is a roadmap for you and your family to best understand, and plan ahead.

Leseprobe

Navigating Your Later Years For Dummies®

Published by: John Wiley & Sons, Inc., 111 River Street, Hoboken, NJ 07030-5774, www.wiley.com

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Published simultaneously in Canada

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Library of Congress Control Number: 2018950670

ISBN 978-1-119-48158-4 (pbk); ISBN 978-1-119-48160-7 (ebk); ISBN 978-1-119-48162-1 (ebk)

Navigating Your Later Years For Dummies®

To view this book's Cheat Sheet, simply go to www.dummies.com and search for “Navigating Your Later Years For Dummies Cheat Sheet” in the Search box.

Table of Contents

Cover

Introduction

About This Book

Foolish Assumptions

Icons Used in This Book

Beyond the Book

Where to Go from Here

Part 1: Getting Started with Navigating Your Later Years

Chapter 1: Looking Ahead: The Big Picture

Planning for the Future Starts with You

Navigating the Roadblocks of Planning

Unraveling the Meaning of Long-Term Care

Discovering How Your Options Are Changing

Meeting Your Changing Needs

Getting Professional Advice

Chapter 2: A Personal Inventory: Past, Present, and Future

Looking at the Present — and the Future

Creating a Plan Based on Your Profile

Drawing a CareMap to Visualize Your Profile

Chapter 3: Finding Services

Where to Turn for Help

Taking Your Research to the Next Level: Site Visits for Housing

Chapter 4: Making Decisions: A Family Affair

Holding Family Meetings

Being Considerate of Others

Dealing with Conflict

Part 2: Choosing Where to Live

Chapter 5: Staying in Your Home

Staying at Home in Your Community

Dealing with Two Major Hazards

Modifying a Home

Seeking Help at Home

Preparing for an Emergency

Chapter 6: Under One Roof: Generations Living Together

Multigenerational Living: Everything Old Is New Again

Where Should We All Live? Considering the Options

Making the Move

Checking In over the Long Haul

Chapter 7: Downsizing for Now and Later

The Emotional Aspects of Downsizing

Downsizing and Home Renovations

Getting Started

Making the Move

Chapter 8: Assisted and Independent Living and Other Group Settings

What Is Assisted Living?

Evaluating the Cost of Assisted Living

Beyond the Brochure: What to Look For When You Visit

Pitfalls to Avoid

Independent Living and Other Options for Group Living

Chapter 9: Beyond Your Home: Living in a Community

Understanding Why Community Matters

Taking a Walk Around Your Community

Finding Community Services

Considering NORCs and Village Networks

Chapter 10: Getting Around: Transportation Options

Judging Whether Driving Is Still Safe

Making Your Car Fit You

Knowing When It’s Time to Give Up the Keys

Finding Alternatives to Driving

Part 3: Legal and Financial Planning

Chapter 11: Unraveling the Rules of Medicare and Medicaid

The Distinction between Medicare and Medicaid

Looking at Medicare Basics

Medicaid Ground Rules

Coordinating Benefits

Chapter 12: Paying for Care: Long-Term Care Insurance and Other Options

Reviewing the Ups and Downs of Long-Term Care Insurance

Receiving Money through Annuities

Using Disability Insurance

Selling Your Policy: Life Settlements

Considering a Reverse Mortgage

Chapter 13: Financial Matters: Money Management, Wills, Trusts, and More

Managing Money

Where There’s a Will …

Settling the Estate with Probate

Reviewing the Rules on Estate Taxes

Establishing a Trust

Considering Guardianship

Part 4: Managing Your Healthcare

Chapter 14: Choosing Good Medical Care

Checking on the Special Medical Needs of Older Adults

Finding the Right Specialist to Manage Care

Navigating Hospitals

Polypharmacy: Too Many Drugs?

Chapter 15: Demystifying Home Care

Examining Varieties of Home Care

Surveying Services from a Home Healthcare Agency

Paying for Home Care

Working with Home Care Aides

Paying Family or Friends to Provide Care

Is There a Doctor in the House?

Chapter 16: Understanding the Different Roles of Nursing Homes

Beginning with Nursing Home Basics

Visiting Nursing Homes

Checking Out New Models of Nursing-Home Care

Responding to Residents’ Problems in Nursing Homes

Chapter 17: Getting the Healthcare You Want (And Avoiding What You Don’t Want)

Talking about Future Healthcare Decisions

Dealing with the Rules of Advance Directives

Understanding Care Options for Serious Illness: Palliative Care and Hospice

Part 5: Services for Special Groups

Chapter 18: LGBT Older Adults

Recognizing LGBT Aging and Health Issues

Knowing Legal Protections and Their Limits

Keeping Legal Documents at the Ready

Finding LGBT-Friendly Providers and Facilities

Chapter 19: Services for Veterans

Getting into the VA System

Supporting Veterans and Their Families

Noting VA Options for Older Veterans

Finding the Right Residential Setting or Nursing Home for Veterans

Using Other Resources to Navigate the VA System

Chapter 20: Family Caregivers

Defining Family Caregivers

Becoming a Family Caregiver

Checking Out Different Types of Family Caregivers

Looking at Your Caregiving Experience through a CareMap

Looking for Help

Part 6: The Part of Tens

Chapter 21: Ten Myths about Aging and Future Care

Serious Memory Lapses Are Normal in Older Adults

Older People Fall: Not Much You Can Do about It

Antibiotics Are the Best Drugs for Older Adults with Coughs and Colds

Americans Dump Their Older Relatives in Nursing Homes

Medicare Pays for All Long-Term Care

Hospice Is Just a Place Where People Go to Die

Millionaires Take Advantage of Medicaid

If I Need Care, I’ll Wind Up in a Nursing Home

Assisted-Living Facilities Are Regulated Like Nursing Homes

Long-Term Care Insurance Covers All Your Needs

Chapter 22: Ten Resources with State-by-State Information

Identifying Local Services through Area Agencies on Aging

Assessing Assisted-Living and Rehabilitation Facilities

Finding Services and Housing Options through Eldercare Locator

Getting Support for Family Caregivers

Modifying Your Home with Rebuilding Together

Getting Information on Medicaid in Your State

Calculating Costs

Finding Your State’s Advance Directives

Solving Problems through an Ombudsman

Resolving Complaints through BFCC-QIOs

Part 7: Appendixes

Appendix A: Glossary

Appendix B: Resources

AARP

Centers for Medicare & Medicaid Services (CMS)

Administration for Community Living

Other Resources

About the Author

Connect with Dummies

Index

End User License Agreement

Guide

Cover

Table of Contents

Begin Reading

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Introduction

If you’ve opened this book, then you’re thinking about how best to navigate this next stage of life, whether for yourself or for a relative. (For simplicity, I’ll refer to “you.”) Here, you find a road map to move forward, step by step.

Turn back, for a moment, to the cover of this book. What I want you to notice is the illustration: a person at the middle of a constellation of people, activities, and services. The icons suggest a full and satisfying life — family, of course, as well as social connections, healthcare and healthy living, community involvement, and resources. The goal of this book is to help you put everything in place now for the best possible future, both for the person at the center and those who care about, and may care for, that person.

Because you’ve picked up or downloaded this book, you probably already know that you have questions. What you may not know is the broad scope of decisions, services, and choices that may arise. In my many years in the fields of health policy, aging, and family caregiving, I have seen that people often start with a specific question about topics such as buying long-term care insurance or choosing an independent- or assisted-living facility and soon find that they need to explore many other avenues as they pursue their goals of good health, independence, choice, and quality of life.

Times have changed, and there are many more options than there were decades ago, so keep an open mind. Learning about these options can be challenging, but finding the answers you need and creating a comprehensive and workable plan that fits your needs are well worth the effort. Like any other major decision in life, planning requires weighing risks and benefits, being flexible, and staying open to change. It can be unsettling. Some of your assumptions and preconceptions may be challenged. Even though I have many years of experience in this field, writing this book has given me new insights into the difficulties that individuals and families face in planning. I have new respect for their diligence and devotion.

About This Book

I wrote this book to offer the broadest possible view as well as to provide information about specific topics. You’ll find out about

Modifications you can make to your home so you can stay independent and live at home as you age

Downsizing your current home or planned move

Options for housing such as independent and assisted living or specially created communities

Multigenerational living

Personal care and homemaker services

Transportation and other community services

Medical care, which may be primary care, preventive care, hospitalization, or rehabilitation services

Financial issues and tips for managing money

Advance directives so your wishes concerning healthcare are known

Wills and estates

Throughout this book, I present you with a range of options to consider, always with the caveat that no one solution works for everyone. You may, for instance, need to make modest adjustments to your home, or you may need to move to an assisted-living community. I also include your family, partner, neighbors, and friends — and the community in which you live — as crucial factors in decision making. Remember too that the emotional aspects of a plan are often underestimated but can determine its success or failure.

I’ve read and contributed to many books that tackle one subject at a time. They are valuable resources but don’t cover the wide landscape. This book is a blend of what I’ve learned from all these approaches, but it presents the big picture and then zeroes in on the practical, hands-on information that is often difficult to find in one place.

You, the reader, decide how to use this book. It is organized so that you can easily find the topics you want to know more about and skip the ones that don’t apply to your situation. There are many ways to get to various chapters and parts of chapters. You don’t need to read the chapters in order, although I would recommend at least skimming the chapters in Part 1 for an orientation to the book’s broad perspective. Of course, you can always come back to these chapters after you have reviewed the areas you want to concentrate on.

Many chapters have separate sections called sidebars, which are brief digressions into history, public policy, little-known facts, or other kinds of information that are not essential to the text but add to its depth. You can safely ignore them, but I hope you at least dip into a few.

Every chapter has web links to other resources to help you get more specific information about a particular topic, find information about your state’s regulations, or delve deeper. You may note that some web addresses break across two lines of text. If you’re reading this book in print and want to visit one of these web pages, simply key in the web address exactly as it’s noted in the text, pretending that the line break doesn’t exist. If you’re reading this as an e-book, just click the web address to be taken directly to the web page.

This book is meant to serve as a reference, so you don’t have to commit any information to memory. It’s all there, waiting to be read and re-read.

Additionally, two other For Dummies books from AARP — Social Security For Dummies (by Jonathan Peterson, published by Wiley) and Medicare For Dummies (by Patricia Barry, published by Wiley) — are helpful adjuncts to this book and offer more detail about those two important public programs.

Foolish Assumptions

This book makes a few assumptions about you, the reader:

You probably don’t know a whole lot about various aspects of housing, finances, legal directives, and medical coverage you’ll want or need to consider as you age. And even if you have some professional or personal background in the field, you can benefit from new information and different perspectives.

You may be starting to plan, or already planning, for yourself or your spouse or partner. You probably have some time to plan before the need arises — but don’t underestimate how long it may take.

You may be starting to plan, or already planning, for an older person such as a parent. The time for planning in this situation may be short; it may follow a health crisis. You need help now. But don’t make quick decisions that will be hard to reverse.

You may be comfortable using the Internet to find additional resources.

You are worried about making the best choices and how to pay for them. Rest easy: You are not alone.

Icons Used in This Book

Throughout the book, you will see several icons that draw your attention to certain kinds of information.

The Tip icon links to an additional resource or offers advice about the topic discussed in the preceding text.

The Remember icon is not a literal order to memorize the information but a word to the wise, a reminder of what you should be considering.

The Warning icon signals important information that alerts you to a potential problem — for example, a fraudulent practice or a scam aimed at older adults.

Technical stuff is just what it sounds like — more detailed information than you don’t absolutely need but that you may find helpful just the same.

Beyond the Book

As they say, “But wait! There’s more!” Online you’ll find extras that come with the book. For Dummies Cheat Sheets are handy online reference tools that you can use over and over — for example, a list of questions to ask when you visit an assisted-living facility or some easy fixes you can make to your home to prevent falls. To get the Cheat Sheet for this book, simply go to www.dummies.com and search for “Navigating Your Later Years For Dummies Cheat Sheet” in the Search box.

Where to Go from Here

With all the flexibility inherent in the For Dummies format, where should you start? If you know that you want information about a specific topic (for example, reverse mortgages or advance directives), by all means use the table of contents and index to find those sections. If you’re still getting your head around the idea of making long-range plans, pick a chapter that interests you and dig in. You don’t even have to start at the beginning of that chapter. But remember what Maria in The Sound of Music told her young pupils: The beginning is a very good place to start.

Part 1

Getting Started with Navigating Your Later Years

IN THIS PART …

Find out how planning for your future yet staying flexible can help you stay in control and avoid crises.

Start assessing your current and future needs by creating a personal inventory of your health status, family and friends, personality characteristics, and attitudes about money. All these factors affect your plans, and some may make you think more deeply about your own preferences and values. You can also draw a CareMap, as shown in Chapter 2.

Start researching your options through federal resources, state and local resources, and private groups. Being inquisitive but skeptical is a good approach.

Make decisions a family affair. I suggest when a family meeting may be advisable, whether you need to invite an outside mediator, and how to avoid or deal with conflict.

Chapter 1

Looking Ahead: The Big Picture

IN THIS CHAPTER

Planning now for what you may need in the future

Overcoming potential roadblocks

Clarifying terms, options, and needs

Selecting good advisers

Just by opening this book, you have become a member of a select group of people who are taking a big step toward a better future for yourself and your family. Most studies show that only a third of Americans have made even the most basic plans to prepare or pay for their future needs. Studies show that few older Americans have done substantial planning or saving for their future needs.

Thinking about the many aspects to consider — from finances to housing to healthcare and more — may be challenging because the choices available are often complex. They may involve myriad financial calculations as well as personal and family preferences. But planning today lets you envision the tomorrow of your choice and make it happen. In this chapter, I help you start to think about future needs in a proactive, calm, and positive way.

Planning for the Future Starts with You

Future care is different for each individual, tailored to a person’s needs and preferences. I want to reinforce this notion: Your plans today do not start with a place or a payment mechanism or a set of services; they start with a person.

Throughout this book, I reinforce the idea that a future plan is not just about where you live or what services you get but also about how you want to live and how to achieve your goals.

In addition to being person-centered, planning should start early. You’ll want to start to think about housing, for instance, at a point when you have various options — whether at home or in a community — that prolong independence and make it less likely that institutional care will later be needed. From that perspective, modifying, and downsizing your home to make it safer and more accessible may be part of your plan. So is considering the possibility of multigenerational living and various forms of group residence in the community. Transportation options are critical to the success of your plan. These options are discussed in Part 2.

The chapters in Part 3 take up the important issues of financial and legal planning. What will Medicare pay for? What are the eligibility criteria for Medicaid? Should you consider buying long-term care insurance? What new products are available to meet financial needs? What steps can you take to draw up a will and other legal documents when you are healthy and able to make your preferences known?

Part 4 addresses managing your healthcare, from choosing a doctor to understanding different types of home care to the changes in skilled nursing facilities that are making these facilities more home-like and person-centered.

Part 5 looks at the special issues you may face if you are LGBT, a family caregiver, or a veteran of military service.

Finally, Part 6 has a chapter on common myths about aging and care. Here you’ll also find a list of websites with state-by-state information, valuable because so much of future care is determined by state, not federal policies. Appendix A is a glossary of terms you may encounter, and Appendix B is a list of resources.

Navigating the Roadblocks of Planning

Aging is a reality. And an undeniable part of that reality is that most people, especially those who live to an advanced age, will need assistance in some aspects of their lives. If you are 65, you have nearly a 70 percent chance of needing some type of extended care and support at some future point, according to the U.S. Department of Health and Human Services. One-third of 65-year-olds may never need it, but 20 percent will need it for more than 5 years.

Yet what is undeniable in terms of demographics is easily deniable when it comes to anticipating our own lives and those of our older family members. About half of Americans over the age of 40 believe that “almost everyone” is likely to require long-term care at some point, but only a quarter think they themselves will need it, according to a 2016 survey conducted by the Associated Press-NORC Center for Public Affairs Research.

I can check off quite a few reasons for delaying the planning process, but there are just as many benefits to starting now.

Reasons for resistance

It isn’t hard to understand why we resist planning for our future needs. The usual suspects are societal attitudes that glamorize youth, attempts to erase signs of aging, denial of mortality, and fear of dependence.

Another reason for resistance to planning is the high financial cost, which is usually described in terms of skilled nursing facilities or extensive home care services. Search the Internet for “long-term care” and you will be directed primarily to articles on its financial aspects, offering suggestions about financial planning or advertising facilities and services. Paying for long-term care is a major topic (and it comes up repeatedly in this book; check out Part 3), but it is by no means the only topic to consider. Sometimes the focus on the high cost is itself a deterrent to planning. It may seem impossible to save or obtain that much money, so why try? Again, costs are a reality but should not deter planning.

Only about a third (35 percent) of the respondents in the AP-NORC survey I cite earlier had saved money to pay for their long-term needs. Moreover, their understanding of costs was wide of the mark, both in underestimates and overestimates. Under a third can correctly identify the range of costs for nursing homes, assisted living, and home care aides. And they didn’t expect to pay the bill themselves. They expected Medicare to pay for a home health aide or a nursing-home stay, which is covered only for short-term care, not long-term care, and then only under certain circumstances. (For more on what Medicare covers, see Chapter 11.)

The benefits of planning

Decisions made in a crisis are often hasty and ill-considered. This is true in many aspects of life but is particularly problematic when a person’s health and well-being are at stake. Not all crises can be avoided, but when they do occur, having a plan in place reduces the likelihood of the most severe unintended consequences.

For example, an important part of a plan is having an advance directive and identifying a healthcare proxy (a person legally authorized to speak for you; see Chapter 17 for more information). In a medical emergency where you can’t speak for yourself, an advance directive and a healthcare proxy can make it more likely that you get the types of treatment you want and — even more difficult to achieve — don’t get what you don’t want. Certainly, it can be hard to think about this kind of situation, but the alternative is worse. Without some form of advance directive, no one will know what you want or don’t want, and it will be unclear who has the authority to speak for you. If your family members can’t agree, the decision will be made by strangers, and in the worst-case scenario, there will be litigation. The effort involved in planning ahead is minimal compared to the consequences of not doing so.

This example also underscores another benefit of planning: making decisions for yourself instead of leaving them to others or to chance. Having absolute control is unrealistic and possibly even undesirable, but letting family and other intimates know your values and preferences about treatment goals leaves more in your hands.

Some families are used to discussing and even arguing about all sorts of things, from trivial to significant. Others avoid conversations about serious matters. You can’t change family dynamics that developed over years, but you can work within that framework to make your wishes known and to anticipate objections. Sometimes you may have to make some compromises, such as limiting when and where you drive or accepting some help at home. In other situations, your family may have to accept a less-than-perfect living situation out of respect for your wishes, such as staying in your own home. If you and your family can negotiate these bumps, you are all less likely to find yourselves in opposite camps when it comes to making major decisions.

Planning ahead also allows you to investigate more choices more thoroughly. You will still have hard decisions to make, but you will have the benefit of information, discussion, and time. Still, your planning should be flexible. Try to build in as many alternatives as possible to allow for changes in health, finances, family situations, and all the other elements that can make a difference.

Unraveling the Meaning of Long-Term Care

Although I use it sparingly in this book, you’ve probably heard the phrase long-term care. This phrase, still used throughout much of the field of aging and healthcare, is not straightforward. Many people in the field of aging consider long-term care to be services that are nonmedical, such as personal care (bathing, dressing, feeding) or household tasks (shopping, cooking, transportation). Although these aspects of assistance are essential, in this book I take a broader view to include factors like medical care, housing options, financial considerations, advance care planning, and the community environment. I believe that when considering future care, most people should look at the whole spectrum of need rather than only specific segments.

A good introduction to the basics of long-term care is this government publication: longtermcare.acl.gov/the-basics/.

The National Center for Health Statistics found that about 67,000 long-term care providers served about 9 million people in the United States in 2013–2014. These included 30,200 assisted-living and other residential care communities, 15,600 nursing homes, 12,400 home health agencies, 4,800 adult day services, and 4,000 hospices. The majority of home healthcare agencies, hospices, nursing homes, and assisted-living and other residential care communities were run by for-profit companies, often affiliated with chains. Only adult day services were mostly nonprofit. It’s a myth that most older adults are in nursing facilities: the actual number is about 1.4 million out of a total population of 47.8 million over the age of 65. The full report is available at www.cdc.gov/nchs/data/series/sr_03/sr03_038.pdf.

As I frame it, long-term or future care includes the various kinds of assistance a person needs to maintain the highest possible level of health and quality of life over time. As the population ages and increasingly more people face chronic illnesses, which often diminish the ability to function independently, future care needs to encompass and integrate a broader range of services to meet complex needs. Some aspects of planning concern immediate or foreseeable needs — for example, for a person with chronic illnesses or disabilities. Other aspects may fall under the heading of long-range planning — for example, considering long-term care insurance or establishing a regular savings plan. Some aspects of planning, such as preparing a will and an advance directive, should be done by every adult, even those in excellent health.

Defining long-term services and supports

One term you may run across as you plan for the future is long-term services and supports, or LTSS. This term typically refers to nonmedical services paid for privately or by Medicaid, although it can also apply to services such as transportation and homemaker visits provided by community agencies. By replacing the care in long-term care — which some people with disabilities see as a negative term — with the more impersonal supports and services, the new terminology is intended to stress an individual’s independence and control over who helps and how that assistance is organized. Whichever term is used, a person- and family-centered approach is key, and this is something I stress throughout this book.

Noting that “LTSS has traditionally been provided in a fragmented, uncoordinated system of care provided by disparate agencies, each with its own funding, rules, and processes, and which are separate from the healthcare system,” the federal Commission on Long-Term Care in its 2013 report to Congress recommended that individuals and service providers “align incentives to improve the integration of LTSS with healthcare services in a person- and family-centered approach.” The Commission’s final report is available at www.gpo.gov/fdsys/pkg/GPO-LTCCOMMISSION/pdf/GPO-LTCCOMMISSION.pdf. While some states and localities have taken steps to achieve this goal, it remains unfulfilled for many people.

Understanding what Medicare covers

“Medicare does not cover long-term care.” You’ll probably come across this mantra again and again in your research. Yet in this book I devote considerable attention to Medicare, precisely because many beneficiaries consider it their starting point in thinking about their future care needs. So, what will Medicare cover? Understanding its limits is a first step in your reality check. What Medicare covers (after deductibles, coinsurance, and copays), you do not have to pay for; what Medicare does not cover requires additional resources.

To help you understand what Medicare covers, here is its definition of long-term care, as stated in its 2018 handbook “Medicare and You”:

Long-term care includes nonmedical care for people who have a chronic illness or disability. This includes nonskilled personal care assistance, like help with everyday activities, including dress, bathing, and using the bathroom. Medicare and most health insurance plans, including the Medicare Supplement Insurance Plans (Medigap) policies, don’t pay for this type of care, sometimes called “custodial care.” Long-term care can be provided at home, in the community, or in various other types of facilities, including nursing homes and assisted-living facilities.

And here’s Medicare’s definition of custodial care:

Nonskilled personal care, such as help with activities of daily living like bathing, dressing, eating, getting in or out of a bed or chair, moving around, and using the bathroom. It may also include the kind of health-related care that most people do themselves, like using eye drops. In most cases, Medicare doesn’t pay for custodial care.

Custodial care, a term many people find demeaning, is often called personal care. Whatever term you use, personal care does require considerable skill, as anyone who has performed these tasks knows.

Discovering How Your Options Are Changing

Your options for the future are expanding — and that’s a good thing. There are many more alternatives for living at home or in the community, where the clear majority of people want to be. Technology is making it possible to have your healthcare monitored at home and to keep you in touch with family and friends. There is a greater awareness of the importance of a stimulating environment and social connections for mental and physical health.

Skilled nursing facilities are changing too, as they move toward a more person-centered focus and introduce elements of stimulating activity and participation for their long-stay residents.

Looking at why changes are being made

There are several reasons for these changes in the landscape.

Money is a factor

One reason is economic: Medicaid — the federal-state program for low-income people — is the major payer of nursing homes and community-based services, and policymakers want to keep those costs in check. According to a 2013 report from the Scan Foundation, in fiscal year 2010 Medicaid paid 62.2 percent of long-term care expenditures. Only 21.9 percent was paid for out-of-pocket; 11.6 percent by other private sources, including long-term care insurance; and 4.4 percent by other public sources, such as the U.S. Department of Veteran Affairs (VA). Medicaid’s long-term care expenditures are expected to increase from $207.9 billion in 2010 to $346 billion in 2040.

To keep this spending in check, Medicaid has tried to move away from what has been called an “institutional bias,” which means that the bulk of funding goes toward skilled nursing facilities, putting it instead toward more community-based care. In 1995, for example, 80 percent of Medicaid spending on long-term care was for institutional care; by 2011 that percentage had dropped to 55 percent. Community-based care is typically cheaper than skilled nursing facility care, which makes it attractive to Medicaid programs faced with escalating costs, and it is also preferred by individuals.

While this should be a win-win situation, it has proven difficult to implement fully, partly because of the need for more housing options and direct-care workers to provide community care. Another reason is that federal rules require state Medicaid programs to provide institutional care and home health services, while coverage of home- and community-based services is optional. States differ in what they cover under this optional category.

Legal reasons

The federal Americans with Disabilities Act (ADA) is another reason for changes. In 1999, the U.S. Supreme Court held in Olmstead v. L.C. that unjustified segregation of persons with disabilities in nursing homes constitutes discrimination in violation of Title II of the ADA. The Court held that public programs such as Medicaid must offer community-based services to people with disabilities when such services are appropriate, the affected person doesn’t oppose community-based treatment, and community-based services can be reasonably accommodated, considering the resources available and the needs of others who are receiving disability services from the entity.

In its ruling, the Supreme Court explained that “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life.” Furthermore, “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.” Although the case that reached the Supreme Court was about two young people with mental disabilities, the Olmstead decision applies to people of all ages and all different kinds of disabilities. (Many states have yet to implement fully a plan for moving eligible people from institutions to the community.)

While the Olmstead ruling is limited to a defined group of nursing-home residents, it acts as an incentive for federal and state programs to develop appropriate community-based alternatives to institutions, which may benefit a larger group of people. It also reaffirms the importance of consumer choice in long-term care.

People want change

In addition to economic incentives and legal rulings, consumer demand has also played a part in moving away from old forms of long-term care — think traditional skilled nursing homes — to more home-like and person-centered settings. As people live longer — often into their 90s and beyond — the length of time a person needs various forms of care has increased and has required accommodation to various levels of need.

Although the trends of home-like and person-centered settings are positive, implementation across the country is inconsistent and variable. At best, the system is a patchwork quilt of settings and services, some strong and some weak, with different eligibility requirements and payment sources. But compared to a few decades ago, the quilt itself is bigger because people have demanded better options. In later chapters (especially in Part 2), I describe several of these newer options, with some suggestions about how to find out more about what is available in your community.

Keeping up with insider language

Every industry and service enterprise has its own language. As with long-term care and long-term services and supports, the terms are constantly evolving. Those who are fluent in this language sometimes forget that newcomers to the field don’t understand their acronyms, shorthand, and jargon. Throughout this book I explain terms as they come up, and I include a glossary in Appendix A. Just to get started, however, here are a few of the terms that you may encounter. As you move forward, don’t hesitate to ask when someone uses a term you don’t understand or seems to be using a term in a way that is unfamiliar:

Activities of daily living (ADLs):

These activities are ordinary tasks like bathing, eating, getting dressed, and going to the bathroom that most people don’t think twice about but that become difficult for a person who is ill or frail or has a disability. Assistance with ADLs can range from lending a hand, literally or figuratively, to heavy lifting and taking total responsibility for carrying out the task. (Also see IADLs later in this list.) The number of ADLs is often used as a benchmark for eligibility for long-term care insurance benefits or nursing-home or home-based services.

Acute care:

This type of care is provided in hospitals to treat an illness or accident that needs immediate attention. Acute care is distinguished from

chronic care,

which treats illness that lasts for a long time;

post-acute care,

which includes care at home or in a skilled nursing facility after a hospitalization; and

long-term care,

which may involve episodes of both acute care and chronic care. Coordinating care among acute care and chronic and long-term care is often a job that falls to family members or to the person needing the care.

Assisted-living facilities:

Even though most people have heard of assisted living, there is no standard definition. States vary in what they call these facilities and how they regulate them, if they do at all. Generally, however, assisted-living facilities are group settings for people who need assistance in ADLs or IADLs but do not require the medical care typically provided in skilled nursing facilities. (See

Chapter 8

.)

Instrumental activities of daily living (IADLs):

These activities are the common household or management tasks such as paying bills, organizing transportation, shopping, and doing laundry. They often go hand in hand with ADLs because the person who needs assistance with physical care may not be able to drive or shop alone. Even using the phone with all the complicated prompts that you encounter today may be difficult for someone with, for example, severe arthritis. But needing assistance with ADLs or IADLs is not necessarily associated with cognitive decline.

Skilled nursing facility (SNF):

These facilities provide skilled care that can only be provided by a nurse, such as injections, and rehabilitation services, such as physical therapy, and are certified to meet federal and state standards.

Transfer:

Here’s a term that has several meanings. In long-term care jargon, it usually means moving a person from bed to chair or the reverse. Someone who is a

two-person transfer

requires two aides to do the job. This may be because the person is obese or paralyzed, or has another condition that makes it unsafe for both the person and the helper to manage alone. The second meaning of transfer refers to moving a person from one setting to another, such as from an assisted-living facility to a hospital emergency department. This is often called a

transition.

A good place to look up terms that relate to Medicaid and financial issues is the glossary at longtermcare.acl.gov/the-basics/glossary.html. Another resource is the United Hospital Fund’s Next Step in Care “Terms and Definitions” at www.nextstepincare.org/Terms_and_Definitions/. For medical terms, consult a medical dictionary or the resources, including videos, from the National Institutes of Health Medline Plus at www.nlm.nih.gov/medlineplus/.

You will find that different people interpret terms differently and that agencies and insurance companies often have their own interpretations of what counts as, for example, medically necessary, which is often the trigger for benefits. To keep everything straight, I suggest writing down the information you’re given when it relates to eligibility or another aspect of services, along with the name, title, and contact information of the person who gave you the information. And if you don’t like the definition you’re given by someone, you may be able to get a more favorable interpretation from a supervisor after you’ve explained the situation.

Meeting Your Changing Needs

Planning should be a dynamic process. Where you want to live in your 60s may look very different from where you’ll want to be in your 80s. Your needs change based on your finances, family circumstances, health, and more. Someone considering moving from a single-family house to an apartment or assisted-living facility should think about whether this is a move that can satisfy future needs as well as immediate ones. Not everyone moves though the spectrum of needs at the same pace, or even goes through all the same stages. The needs of a person with mild cognitive impairment, for instance, are very different from the needs of a person with advanced dementia. As another example, someone diagnosed with diabetes needs chronic care — that is, doctor or nurse visits; ongoing monitoring, including blood tests; medications; and foot and vision exams. If the diabetic condition deteriorates to the point where the person is unable to walk or perform daily activities independently, then significant changes need to be made.

Some future needs can be anticipated, and others cannot. The goal is not to have a detailed plan for every possible contingency but a general idea of what can reasonably be anticipated and planned for.

Location, location, location

The well-worn real estate adage of choosing a home based on location applies to this stage of your life as well. In this case, location is not so much an economic asset (although in some cases it can be) as a symbol of personal comfort and satisfaction and, often, being near family and close friends. Consider how you will meet all your needs — including the social and emotional aspects.

Many people just say, “I want to stay in my own home!” And indeed, that’s a reasonable short-term goal, but it may not be feasible in the long run. Beyond their initial statement, many people just stop thinking about it or assume that their children (or more likely, a particular child) will say, “I’ll move in with you so you can stay at home.” Maybe that will happen, and maybe it won’t. But it certainly requires an explicit understanding, not just an assumption.

In thinking about location, you want to consider:

Family:

Moving to another community to be nearer children, often at their urging, may be an option. You should consider what you may lose and what you may gain. Someone with strong ties to a particular community — for example, a faith community or club or other group — may miss that connection. On the other hand, you may be able to re-create those ties in another setting. A lot depends on the type of community you would move to, whether you have spent enough time there to be confident you would like it, and whether you will have to depend on your children for transportation and other needs. Visiting your children as a guest and participating in their activities is different from being a permanent resident. Some social groups welcome newcomers, but others closed their ranks a long time ago.

Climate:

It’s almost a stereotype that older people want to move to warmer places, but in fact that is one main reason people do relocate. There may be health reasons to move to a different climate, or the upkeep on a house and car in a winter zone may be too onerous to sustain. But not everyone adjusts easily to a more or less constant temperature, especially if it’s very hot. And although blizzards can create dangerous situations for someone living alone, so can hurricanes and tornados, which generally occur in warmer areas.

Cost of living:

Different regions of the country are more or less expensive places to live. This applies to costs of housing, medical care, food, personal care services, transportation, and other items that will figure into your plan as well as independent or assisted living.

An extended visit to a community you’re considering is a good way to find out whether you like it or not. Before or after your visit, you can look online to get an idea of prices for everything from groceries to rentals. You’ll also see what social, sporting, and cultural events are featured. Think about what you most like to do now and what you would like to be able to do in a new location.

Timing and flexibility

If you’re going to make a change, when is the best time to do it? I can’t give you the perfect answer. Still, if you’re planning to stay where you are for the immediate future, you should start now to reassess your home for safety and accessibility. The mostly minor modifications you can make now (see Chapter 5) will help prevent falls, which are the most common reason for a need for more intense long-term care services. Even if you don’t expect to stay in this location permanently, the modifications will add value to your home because they will also make it safer for others, including families with young children.

At the same time, you should begin to investigate alternatives. Without the pressure of family members or doctors insisting that you make a change, you can think about what matters most to you and what you have become used to but can live without.

If a change does fit into your plan, allow enough time to make all the arrangements and consider all the pieces that need to be reassembled in a new location, whether that is independent living, assisted living, or another option. Downsizing and moving is one of life’s most stressful events, even if it is well-planned and desired. Take your time.

You may not have enough space in your new location for the lifetime of memorabilia and objects you have collected. You may have to donate or sell some possessions. If you’re moving from a big house to a smaller house, apartment, or condo, you may have to decide what furniture to keep and what won’t work in the new setting. This process — with the emotional impact of dealing with so many memories at once — stops many people from moving forward. But if you enlist help from family, friends, and, if need be, from professional organizers, it can be liberating. (See Chapter 7 for more information.)

Be flexible. Even if you aren’t moving to a different location or a different community, you’re entering a new stage of life. Change can be stimulating but also disorienting.

Paradoxically, remaining independent often means asking for help. Asking for and accepting help is often a major hurdle in any future plan. Being willing to acknowledge that you can’t do everything alone (and probably you never really did) is the first step toward a person-centered plan. Family and friends are your first sources of help, but they are not the only ones. Neighbors, volunteers from community groups, building contractors, home care aides, and transportation services can all play a part in helping you achieve your goals.

Getting Professional Advice

Among the people you may need to consult as you navigate this path are professionals such as doctors, lawyers, and accountants. These professionals can help you make realistic plans and avoid costly and potentially damaging errors.

Choosing these advisers can be tricky. Your niece who just graduated from law school may offer to help you write a will, but she lives in a different state and doesn’t know the law in your state. You have some investments with a local broker, and you have done well with his recommendations. But he has a financial interest in guiding you toward certain choices, which may not serve you well as you contemplate the future. And even your doctor, who has taken care of you for years, sees you as you are, not necessarily as you may become. She may or may not be the best person to give you a completely honest appraisal of your health outlook for the future.

These people may be competent advisers. It makes sense, however, to consult with others so that you can be sure you’re getting objective and accurate information.

For example, you may want to ask for a geriatric evaluation from a physician who is experienced in caring for older adults, whose course of illness and reactions to medications may differ significantly from younger people. An attorney who specializes in elder law has particular expertise and can guide you toward creating documents that contain the precise instructions you want. And a financial adviser who charges a fee but does not gain from your investment choices may be a good person to help work out the financial aspects of your plan.

When considering using the services of a specific professional, ask about the following issues before moving forward:

Experience with working with clients with similar needs

Length of time in practice

Recommendations

Fees for the service

Even with good advisers, you need to be intimately involved in all decisions (or have a family member do this on your behalf). The investment of your time and money helps ensure that you get the kind of future care you want.

Chapter 2

A Personal Inventory: Past, Present, and Future

IN THIS CHAPTER

Assessing the present and the future

Putting together a profile

Visualizing your profile with a CareMap

Your vision of your future reflects you as you are now and what you have experienced in the past. A lot depends on your current health status and anticipated future needs, of course, and your preferences for assistance in managing day-to-day activities. Finances are an important part of the equation as well.

But two people with the same health and financial profile may want to live in different types of settings and receive help in different ways. In this chapter, I help you step back from short-term decisions and think about the kind of person you are and how you want to spend your time. If another person will be sharing this stage of life with you, you should both undertake this exercise. It may reveal some surprises as well as similarities in goals. If you’re helping a parent or other older relative plan, you can encourage them to go through the process with your help. You’ll get to know each other in new and possibly revealing ways. This chapter guides you through finding out what type of setting best suits your needs and lifestyle. It also helps you create a plan to steer you in the right direction for the future — including a tool called a CareMap.

Looking at the Present — and the Future

Imagining what you’ll be like in 10, 15, or 20 years is hard. But your life so far gives you some clues. What were you like 10, 15, or 20 years ago? Have you changed a lot, or is there a consistent pattern? Have you changed jobs or careers? Have you moved around the country or internationally? Have you been married, divorced, or widowed — more than once? Have your spending or savings habits changed? Or has your life gone along in more or less planned and predictable ways?

These questions aren’t intended to be value judgments about one lifestyle versus another but simply a way for you to consider your tolerance for risk (or, if you prefer, adventure), need for stability, and comfort with change. In the following sections, I organize the inventory around four categories: healthcare needs; family, friends, and professionals; personality characteristics; and attitudes about money. Each is an important element in creating your personal profile.

Healthcare needs

Your overall health and any special considerations are clearly important aspects to consider not only on their own but because they will affect many aspects of the nonmedical assistance you may need.

Here are some questions to ask yourself. Be ruthlessly honest. No one else has to see your list unless you want to share. It is intended to give you a template to think about your healthcare needs and how they would be incorporated into a future plan:

How would you describe your overall health — poor, fair, good, excellent? Has this status changed in the past few years?

Do you have any chronic conditions? (Examples are high blood pressure, diabetes, arthritis, and heart problems.) What are they? Are they under control?

Is the condition expected to get worse as you age?

How many doctors do you see regularly? Are your appointments regularly scheduled checkups or as-needed visits? Do these doctors share information with each other and with you?

Do you see any other healthcare professionals — home care nurse, physical therapist, or chiropractor, for example?

Do any of your health conditions limit your ability to function at home or in the community?

Do you use mobility assistive devices of any kind — cane, walker, or wheelchair, for example?

How many prescription medications do you take?

How many over-the-counter (OTC) medications such as vitamins or aspirin do you take?