Long-term care and long-term care insurance
Planning and preferences for long-term care and end-of-life care
• • • FIVE WISHES. Put this Aging with Dignity document and task at the top of your to-do list. Expressing your Five Wishes lets your family and doctors know:
* Who you want to make health care decisions for you when you can't make them.
* The kind of medical treatment you want or don't want.
* How comfortable you want to be.
* How you want people to treat you.
* What you want your loved ones to know.
• The One Slide (PDF, Engage with Grace project). Download and print this one page with five questions that you should be asking each other well before you need to act on the responses. How intensely do you want medical intervention if things are looking critical, or do you just want to be let to die? Would you rather die at home or in a hospital? Do your loved ones know how you would want to be treated if your condition is terminal? Have you appointed someone you trust to be your advocate when the time comes? Have you written a living will,, appointed a healthcare power of attorney, or completed an advance directive? Watch this video for the Engage with Grace story.
• Some Conversations Are Easier Than Others (Alexandra Drane, Eliza blog)
• Help! Keith Olbermann on 'The Life Panel.' "Have that conversation." Keith Olbermann's statement about the conversation he had with his father, who was exhausted and terrified from multiple procedures and complications after having his colon removed. Conferring with the doctors and asking them to give him a rest from procedures was a "life panel," not a "death panel."
• Compassion & Choices supports, educates and advocates for choice and care at the end of life -- improving pain and palliative care, enforcing living wills and advance directives, and legalizing aid in dying. Works to change attitudes, practices and policies so that everyone can access the information and options they need to have more control and comfort at the end of life. On its website are many helpful documents, guides, and links to helpful material, including
--- Get the Care You Want – No More, No Less. (must-read page on advance directives and more)
---Unwanted medical treatment toolkit and other resources for the media (and regular people)
---Stories about the end-of-life issues we all face
---Active cases involving patients' rights to get or suspend the end-of-life care they choose
• Compare Long Term Care Costs Across the United States (Carescout, for the Genworth Cost of Care Survey)
• Cost of Care Survey 2019 (Genworth) Every day until 2030, 10,000 Baby Boomers will turn 65 and 7 out of 10 people will require long term care in their lifetime. The cost of that care varies based on care setting, geographic location of care and level of care required, among other things. Using Genworth’s Cost of Care Survey tool below, you and your family can calculate the cost of long term care across the U.S. Knowing the cost is a first step to helping you plan for it.
• Medicaid Long Term Care Guide: Eligibility By State (Senior Planning's excellent map and information) Every state has individual programs and eligibility requirements for their Medicaid long term care. Medicaid long term care is a partnership between the state and federal government with the goal of taking care of each state’s aged, blind, or disabled populations. Click your state for a comprehensive look at available programs and eligibility qualifications.
• Lessons on End-of-Life Care From a Sister’s Death (Paula Span, New old Age, NY Times, 5-22-15) The more crucial function of advance directives may be to instruct the family, to tell the people who will make decisions for you what you want and, as important, what you don’t want
• A Novel Way to Document End-of-Life Preferences (Paula Span, The New Old Age, NY Times, 7-25-13) Maybe a doctor, at a hospital or not, can without angst get end-of-life decisions in 10 minutes that families fear bringing up.
• Glossary of terms associated with long-term care (Long-term care.gov)
• Preparing for a Loved One to Die at Home (Susan Seliger, NY Times, 1-14-13) What specialists say are the most common kinds of equipment and preparations you may need, for someone dying at home.
• How Americans' refusal to talk about death hurts the elderly (Sarah Cliff, Vox,1-11-15) Even as we learn more about extending life, we won't be able to improve the quality of life that precedes death. "One reason that nursing homes are so soulless is that it's often not the residents who made the decision about where they would live. Instead, it's their caretakers — often adult children — who chose the home, and their end-of-life priorities are frequently different from their parents'. Namely, where their parents value autonomy, children value safety." Let's let elders decide what's best for them.
• Death: A five-part series (To the Best of Our Knowledge, Wisconsin Public Radio). This program gives one hour each to these topics (you can listen online or read the transcript, or both!):
---1) The Reckoning After decades of sanitized death, with dying, funerals, burial and grief shielded from public view, some people are now working to make death a greater part of life. In this hour, they talk with experts about how to begin these difficult conversations, and how they can transform both the dying and the surviving.
---2)Exit Plan . Some doctors don’t know how to talk with their patients about preparing for death, so there’s now a push to have frank conversations about end-of-life care. Includes one family’s story of working within Oregon’s “Death with Dignity” law.
---3) The Last Moment (on preparing now to meet death mindfully, on how one might feel a sense of wonder, and straight talk about near-death experiences.
---4) The Wake (Nov. 30) Explores the pain and healing power of grief, burial and mourning rituals throughout history, talks about why dead bodies can compel or repel us, and discusses of the new Ghanaian tradition of "fantasy" coffins inspired by people's work and dreams.
---5) After Life (December 7) Is death what gives life meaning? This hour explores the philosophical and religious dimensions of mortality and the afterlife -- talks about the art and poetry of remembrance. And now that much of our lives are lived online, how do we plan for our digital afterlives?
• Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, a consensus report from the Institute of Medicine (IOM). A substantial body of evidence shows that broad improvements to end-of-life care are within reach. improving the quality and availability of medical and social services for patients and their families could not only enhance quality of life through the end of life, but may also contribute to a more sustainable care system.
• Four paths to the end of life–one far more expensive than others–emerge in new study (University of Michigan News, 6-15-16) For nearly half of older Americans, the pattern of high spending on healthcare was already in motion a full year before they died. That's thanks to the care they received for their multiple chronic health conditions -- including many doctor visits and regular hospital stays over the year, not just in their final days. As a result, the study shows, the last year of life for this large group of seniors costs the Medicare system five times as much as the care received by the much smaller group of seniors who have a sudden burst of very expensive care in their last few weeks of life.
• Place of death, over time (1989, 1997, 2007) (CDC data)
• The Long-Term Care Challenge (video, Scott Simon, PBS video, Need to Know, 1-4-13, on the unforeseen costs of caring for an aging family member)
• The realities of long-term care in America (Trudy Lieberman, CJR, 1-10-13)
• Planning a Good Death booklet (free download from the BBC)
• Everplans, a simple, secure way to let dependents and survivors know (should you die or become incapacitated): Can they find your will? Turn off your cable? Know how you'd like to be remembered?
• The world's chief faiths (characterized by the BBC)
• No Easy Answers on Financing Long-Term Care (Judith Graham, New Old Age, NY Times, 9-19-13) "The federal Long-Term Care Commission published its full report on Wednesday, but it did little to change the perception that substantial relief for caregivers will be a long time coming." Geriatrician Joanne Lynne "believes that it’s a mistake to separate long-term care from broader reforms of Medicare and the health care delivery system." " The two primary financing options considered by the commission share “some commonalities,” said the commission chairman, "including agreement on the need for strong public programs and a role for the private sector." “If you look carefully at these two perspectives, you can begin to see a way forward.”
• Medi-Cal Long-Term Care: Safety Net or Hammock? (PDF of report from Pacific Research Institute with Center for Long-Term Care Reform)
• Talking Turkey on End-of-Life Issues at Thanksgiving (Gail Rubin, A Good Goodbye, 11-24-14)
• End-of-life issues (articles for WNET Before I Die special)
• End-of-Life Care (Kojo Nnamdi radio program, WAMU, 8-26-09). With guests Malene Davis (President and CEO, Capital Hospice) and Perry Fine (professor of anesthesiology, University of Utah; attending physician, Pain Management Center; author, The Hospice Companion
• Everplans , a site that lists all the steps to take to deal with a death, preferably well in advance.
• Family Conversations About End-Of-Life Care (listen to Diane Rehm and guests on her radio show explore how to begin discussions about end-of life care--explaining some of the things that can go wrong if such discussions are not held."Armed with basic facts and good listening skills, it's possible to create a strategy that gives a loved one comfort and provides caregivers with peace of mind.")
• Later End-of-Life Discussions May Mean More Aggressive Treatment (Randy Dotinga, HealthDay, 11-13-12). Terminally ill people who get early counseling about end-of-life care undergo less aggressive medical treatment in their final days, a new study reports. "By having these discussions earlier, patients can understand what's ahead and make decisions about what's good for them."
• Get Your S--t Together (Chanel Reynolds’s website "named for the scolding, profane exhortation that her inner voice shouted during those dark days in an intensive care unit," where her husband ended up after being hit while riding his bicycle. Excellent templates for end-of-life planning: Checklist, will, living will, power of attorney, details. Her husband died in 2009. Here's her story and advice: A Shocking Death, a Financial Lesson and Help for Others (Ron Lieber, NY Times, 1-11-13).
• A Guide to Legal Issues in Life-Limiting Conditions (American Health Lawyers' Association)
• Pitfalls Seen in a Turn to Privately Run Long-Term Care (Nina Bernstein, NY Times, 3-6-14). "...a closer look at Tennessee, widely cited as a model, reveals hidden pitfalls as the system of caring for the frail comes under the twin pressures of cost containment and profit motive. In many cases, care was denied after needs grew costlier — including care that people would have received under the old system...Like many advocates, [Gordon Bonnyman, former director of the Tennessee Justice Center, a patient advocacy group] originally supported managed long-term care, seeing it as a way to break the stranglehold of nursing home lobbies that opposed shifting more Medicaid money to home and community-based care. But now he says too high a price is being paid by very debilitated people denied care when they need it most."
• Help! Keith Olbermann on 'The Life Panel.' "Have that conversation." Keith Olbermann's statement about the conversation he had with his father, who was exhausted and terrified from multiple procedures and complications after having his colon removed. Conferring with the doctors and asking them to give him a rest from procedures was a "life panel," not a "death panel."
• Jane Brody's Guide to the Great Beyond: A Practical Primer to Help You and Your Loved Ones Prepare Medically, Legally, and Emotionally for the End of Life -- a practical book, with explanations and to-do lists for everything from advance directives and why a living will is not enough to funeral plans, living with a bad prognosis and dealing with uncertainty, caregiving, hospice, communicating with doctors, assisted dying, organ donation, autopsy, and legacies.
• Handbook for Mortals (full text online of consumer guide to end-of-life care by Joanne Lynn and Joan Harrold)
• LeaveLight: A Motivational Guide to Holistic End-of-Life Planning by Marilyn L. Geary and Jacqueline Janssen. Designed to motivate you to write down your end-of-life planning (right up to what you want done with your pets), in a binder in which you express gratitude and forgiveness and express your wishes on everything from distribution of property to ways in which you want to be remembered (what you want in your epitaph and obituary/death notice), and so on -- all the information your survivors need to honor your life and wishes and know how you felt about them. Includes practical info about things such as green burials and recommends participating in a Leavelight Circle: six participants in six 2.5-hour sessions complete their end-of-life plans, getting fear of doing so behind them.
• Legal Guide for the Seriously Ill: Seven Key Steps to Get Your Affairs in Order, prepared by the American Bar Association Commission on Aging for the National Hospice and Palliative Care Organization. Step-by-step instructions on planning for health care expenses; managing health, money, property and personal decisions; planning for the care of dependents; knowing your rights as a patient; and getting your legal documents in order--with information on regulatory and legislative changes related to health care.
• On Our Own Terms resources (links from Bill Moyers' program)
• • • Not Quite Six Feet Under (Tess Vigeland, Marketplace Money, conversations on American Public Radio about end-of-life planning, on topics such as estate planning, medical power of attorney, durable power of attorney, living wills, living trust, and wills--audio files and transcripts)
• On Our Own Terms (listen online to various segments of Bill Moyers' PBS show on dying) and make use of On Our Own Terms resources (links to sites on care options, final days, therapy and support, and other resources). Download free the helpful discussion guide (PDF)
• State Your Intentions With a Letter of Instruction. For a great example, see Kristie Miller's Letter of Intent. Kristie does a great job telling her family what she would want should she decline.
• The 25 Documents You Need Before You Die (Saabira Chaudhuri, Wall Street Journal, 7-1-11). A plan for reducing frustration and financial pain for your heirs.
• Compassionate Allowances. The list of 25 rare diseases and 25 severe cancers for which Social Security will fast-track the processing of claims for applicants whose medical conditions are so severe that their conditions obviously meet Social Security’s standards. Disabled World's explanations seem helpful.
• Compassion and Choices (supports, educates and advocates for choice and care at the end of life -- improving pain and palliative care, enforcing living wills and advance directives, and legalizing aid in dying)
• The difference between a living trust and a living will (Lauren Rickert, Helium)
• Preparing for a Loved One to Die at Home (Susan Seliger, NY Times, 1-14-13) Here's what specialists say are the most common kinds of equipment and preparations you may need.
• You Are Going to Die (Tim Kreider, Anxiety, 1-20-13). "Because of all the stories we’ve absorbed, we vaguely imagine that our lives will take the shape of a narrative ...But life is not shaped like a story; it’s an elongate and flattened bell curve, with an attenuated, anticlimactic decline as long as its beginning. Friends have described seeing their parents lose their faculties one by one, in more or less the reverse order that their young children are acquiring them."
What you need to know about long-term care insurance
See also Issues with long-term care insurance• Long-Term Care Insurance: The Risks and Benefits (Joseph Matthews, Nolo). Is long-term care insurance (LTI) a good investment? An excellent overall explanation--of the odds such a policy will pay off. " this kind of insurance is expensive, and it often provides only limited benefits -- with many restrictions and conditions -- that may end up covering only a small percentage, or nothing at all, of your total long-term care costs. Spells out the odds of your having a long-term nursing home stay and how well that LTI will perform in covering your expenses. (Not well.)
• Long-term care insurance cost: Everything you need to know (MarketWatch)
• When Adult Children—Primarily Daughters—Serve as “Long-Term Care Insurance” (Nicole Dieker, Billfold, 5-15-17) It’s less expensive for the family, but comes at a cost to the daughter.
• Is Long-Term Care Insurance A Waste of Money? (Wealthy Doc) Pros and cons for those with plenty of money.
• 5 Things You SHOULD Know About Long-Term Care Insurance (Ellen Stark, AARP Bulletin, 3-1-18) You might not need insurance, but you need a plan.
• Compare long-term care costs across the United States (Genworth's state-by-state estimator)
• Combine Long-Term Care With Life Insurance? Do the Numbers First (Paul Sullivan, Wealth Matters, NY Times, 12-9-16) "THE market for long-term care insurance, which covers the costs of some in-home health care, has had a rough month. One provider announced that it would not sell any more policies; another is headed toward insolvency, with billions of dollars in liabilities needing to be assumed by someone else.... John Hancock, one of the largest providers of this insurance, announced that it would stop selling new long-term care policies this month. And two subsidiaries of Penn Treaty American Corporation, with billions of dollars in obligations, are set to be liquidated next year....New hybrid policies offer both long-term care and life insurance. Are these newer policies any good? Like most types of insurance, they are only as good as the consumer’s understanding of them — and that may not be as deep as it should be.
• Long-term-care insurance policyholders face sharp premium hikes: ‘When do these increases end? There is no ceiling’ (Steve Jordon, Live Well Nebraska, Omaha World Herald, ) Donna Olesh doesn’t accept her insurance companies’ explanations of why, after several years of low rates and no rate changes, her long-term care insurance company has raised the rates sharply. "Rather, she thinks they started with low premiums to attract customers and now intend to raise rates indefinitely until customers drop out or agree to lower benefits." One of the best articles about long-term care insurance I've seen. Must-read before you invest in this insurance. See especially side-bar along the left side, of Long-term care insurance basics, such as
» Consider “combination” products that include elements of life insurance, annuities and long-term care, as well as straight long-term care coverage.
» Consider “partnership” policies, which can shield assets while qualifying for Medicaid assistance.
» Look for discounts for good health, for making annual premium payments or other features.
» Shop around. Rates for the same coverage vary as much as 40 percent among insurers.
• Special Kiplinger report on long-term care insurance (Kiplinger). Kiplinger published several articles on this complex and fear-provoking topic, starting with Twelve reasons you will go broke in retirement (Stacy Rapacon, a slide show), then 4 Secrets to Buying Long-Term-Care Insurance (Policies are rising in price, while benefits are getting skimpier. Here's how to get the best deal for you.). Then 10 Things You Should Know About Long-Term Care (quiz, updated Jan. 2015), 3 Ways to Lower Your Long-Term-Care Insurance Premiums (Can't afford higher premiums for long-term care insurance? Consider various options to trim your benefit instead.), and Paying Long-Term-Care Premiums With HSA Money (Kimberley Lankford, 7-8-14) The amount you can withdraw from a health savings account tax-free to pay premiums depends on your age.
• High nursing home bills squeeze insurers, driving rates up (Matthew Craft, AP, Pittsburgh PostGazette, 3-29-15) The people who need it the least can afford long-term care insurance; for others, it is increasingly unaffordable. But nursing home bills are rising.
• Must Suspicions About Personal Health Be Shared With an Insurer? (Kwame Anthony Appiah, The Ethicist, NY Times Magazine, 5-4-16) A person says they suspect they have Parkinson's but haven't seen a doctor about it. Must they share what they fear with a long-term care insurer? The answer is VERY good at explaining how insurance works and why it's not working so well now that people are living longer.)
• Mistakes to Avoid When Shopping for Long-Term-Care Insurance (Anne Tergesen, WSJ, 4-13-14). How to Pick the Best the Policy for Your Needs and What to Avoid
• Understanding Long-Term Care Insurance (AARP)
• Hybrid Long-Term Care Policies Provide Cash and Leave Some Behind (John F. Wasik, NY Times, Retirement/Insurance, 3-4-16) A hybrid policy for long-term care works by keeping a certain amount of cash within the policy. Some plans combine nursing care with an annuity, offering monthly payments to the policyholder and a death benefit to survivors. The pros and cons and whys and why nots of such a policy.
• Long-Term Care Insurance Can Be Costly but Effective (John F. Wasik, Retiring, NY Times, 12-25-15) Part 2 of a two-part series. "Long-term care insurance isn’t for everybody, but it can be useful for people who are interested in preserving their estate for their heirs and for families determined to provide high-quality home care or a superior nursing home for aging loved ones...one of the major requirements is to make sure the policy has adequate protection against rising health care costs." Buy early and when you are in good health, but study options "because of the myriad benefits and pricing options" various policies offer.
• Premiums Rise for Long-Term Care Insurance. Keep It or Drop It? (Ann Carrns, Your Money, NY Times 3-21-14) Despite increases of 50% in premiums on old policies, many holders of long-term care insurance are not letting their policies lapse.
• Do retirees need long-term care insurance? (Rodney Brooks, USA TODAY, 9-10-14) Another helpful, albeit discouraging, look at the numbers.
• An Alert When the Policy Lapses (Paula Span, New Old Age, NY Times, 6-12-14). See sad related story: The Policy Lapsed, but No One Knew (Paula Span, 1-31-14).
• Preventing Lapses in Long-Term Care Policies (Ann Carrns, Your Money, NY Times, 6-13-13)
• ElderLaw Answers (What to Look for In a Long-Term Care Insurance Policy, When Should You Purchase Long-Term Care Insurance? How Much Insurance Should You Purchase?, Which Spouse Should Get Coverage?,Long-Term Care Insurance and Medicaid Planning, Partnership Policies, The Tax Deductibility of Long-Term Care Insurance Premiums, The Taxation of Benefits, Consult With a Qualified Agent, Books on Long-Term Care Insurance)
• The Retirement Crisis Nobody Talks About: Long-term Care (Penelope Wang, Money, 6-20-14) If you become disabled, you may face huge bills for daily help. And, no, Medicare doesn't cover it. A review of the numbers.
• What does long-term care cost in your state
• FAQs about long-term care insurance (Honey Leveen) What is and isn't covered by Medicare, for example.
• Long-Term Care Insurance and Our Collective Denial (Ron Lieber, Your Money, NY Times, 10-17-11)
• The Coming Caregiver Crunch and Why This Gerontologist Owns Long Term Care Insurance by Ken Dychtwald, Huffington Post, 11-16-09
• A New Way to Pay for Long-Term Care (Paula Span, New Old Age, NY Times, 10-9-13) Two small companies are offering to buy life insurance policies at a percentage of face value. A new option to consider if you're going to let your life insurance lapse after years of paying into it.
• Do retirees need long-term care insurance? (Rodney Brooks, USA TODAY, 9-10-14) Another helpful, albeit discouraging, look at the numbers.
• A Winding Road to Benefits From Long-Term Care Insurance (David Segal, The Haggler, Your Money, NY Times, 3-23-13)
• Expense and Emotions in Preparing for Long-Term Care (Ann Carrns, Your Money, Your Money NY Times, 3-25-13)
• Not Interested in Long-Term Care Insurance? How About Short-Term Care Insurance? (Howard Gleckman, Caring for our Parents blog). "One financial planner who specializes in middle-market clients . . . says these policies are 'like buying a stuffed bear.' They may make you feel better, but they won’t provide any real financial security."
• Parsing the New Law on Long-Term Care (Paula Span,New York Times, Prescriptions blog, 5-3-10)
• Paying for long-term care (sidebar to WNET special, Before I Die)
• Long-Term Care Insurance: The Essentials (free PDF from MetLife, an insurer)
• J.K. Lasser's Choosing the Right Long-Term Care Insurance by Benjamin Lipson
• Long-Term Care: Your Financial Planning Guide by Phyllis Shelton
• J.K. Lasser's Choosing the Right Long-Term Care Insurance by Benjamin Lipson
• Veterans Benefits for Long Term Care (Debra A. Robinson, ElderCare Matters)
• National Clearinghouse for Long-Term Care Information (U.S. Dept of Health & Human Services)
• Diane Rehm program on long-term care insurance . Listen and/or read the transcript. Speakers were former Social Security Administrator Ken Apfel, Families USA executive director Ron Pollack, and Kiplinger’s Personal Finance columnist Kim Lankford, and Howard Gleckman, author of Caring for Our Parents
Problems with long-term care and long-term care insurance
• Big Profits in Caring for the Elderly (David Leonhardt, Briefing, The Morning Newsletter, NY Times, 12-4-23) In the U.S., companies seek high profits in the long-term care industry. The American health care system maximizes the profits of health care companies at the expense of families’ budgets. In its series called Dying Broke, and it examines the long-term care industry. One major part of the industry is known as assisted living, a name for facilities that are home to about 850,000 older Americans who need help with daily activities — like getting dressed or taking medications — but who don’t need constant nursing care.
---Dying Broke Facing Financial Ruin as Costs Soar for Elder Care
(Reed Abelson and Jordan Rau, NY Times series, 12-4-23) The United States has no coherent system for providing long-term care, leading many who are aging to struggle to stay independent or to rely on a patchwork of solutions. Articles in this series examine how the immense financial costs of long-term care drain older Americans and their families.
---‘I Wish I Had Known That No One Was Going to Help Me’ (11-24-23) Adult children discuss the trials of caring for their aging parents: unreliable agencies, a lack of help and dwindling financial resources.
---A Guide to Long-Term Care Insurance (11-22-23) Deciding when, or whether, to buy long-term care insurance can be complex. Here’s what to know.
---What to Know About Assisted Living (11-19-23) The facilities can look like luxury apartments or modest group homes, and can vary in pricing structures. Here’s a guide.
---What to Know About Home Care Services (12-2-23) Finding an aide to help an older person stay at home safely takes work. Here’s a guide.
---What Long-Term Care Looks Like Around the World (11-14-23) Most countries spend more than the United States on care, but middle class and affluent people still bear a substantial portion of the costs.
• Long-term-care insurance policyholders face sharp premium hikes: ‘When do these increases end? There is no ceiling’ (Steve Jordon, Live Well Nebraska, Omaha World Herald, ) Donna Olesh doesn’t accept her insurance companies’ explanations of why, after several years of low rates and no rate changes, her long-term care insurance company has raised the rates sharply. "Rather, she thinks they started with low premiums to attract customers and now intend to raise rates indefinitely until customers drop out or agree to lower benefits." One of the best articles about long-term care insurance I've seen. Must-read before you invest in this insurance. See especially side-bar along the left side, of Long-term care insurance basics.
• Insured for old age? An economist explains the dangers of long-term care insurance (Lewis Mandell, PBS Newshour, 1-15-14) "The most critical thing to realize is the total amount that such a policy will pay you if you remain in a nursing home for the three full years (after your first 90 uncompensated days): just $164,250, unadjusted for inflation. That’s $150 a day times 365 days in a year times three years. Therefore, if you have that amount in liquid assets per person (money not needed to fund core expenses), you can self-insure for that three-year period." "In spite of paying expensive premiums for many years, some individuals who are “covered” by long-term care insurance policies are surprised to find their claim denied by their insurance company....carefully consider whether its likely benefits are worth the costs."
• Long-Term Care Insurance Can Baffle, With Complex Policies and Costs (John F. Wasik, Retiring, NY Times, 12-18-15) Premiums have increased sharply, and comparisons are difficult, which helps explain why only 20% of those over 65 own a policy. Experts advise consulting an elder law attorney and fee-only financial planner who doesn’t make money from recommending the policies. That’s the best way to receive an objective — and nuanced — evaluation on whether this product makes sense for you.
• One more chance to decide on federal long-term care insurance (Michelle Singletary, WaPo, 9-30-16) When federal long-term health care insurance premiums jump from $285 a month to over $560, or $136 to $400, some feel lowballed by previous premiums. Many people with privately obtained long-term care insurance policies have received similar notices of steep jumps in premiums.
• Dodge the Long-Term Care Insurance Mess (William Baldwin, Forbes, 3-29-13). Do read this one before buying a policy. "From the buyer’s perspective, LTC insurance has three defects, at least when you compare it to the conspicuous alternative, a longevity annuity. The latter is an investment that pays out a fixed monthly sum beginning when the buyer reaches some advanced age, like 80."
• Fine Print and Red Tape in Long-Term Care Policies (Tara Siegel Bernard, NY Times, Your Money, 6-7-13) Long-term care insurance policies aren't like common insurance policies, and that can lead to unexpected requirements, mountains of paperwork, and denied claims. If you need to file a claim on behalf of a loved one, it helps to know why claims are denied and where filers tend to get tripped up (surveyed in this article). Practices vary from company to company and state to state, whether you can trust the company depends on regulation in that state, and most states have limited regulation.
• Long-term care rate hike stuns retirees (Victoria Colliver, SFGate, 2-25-13)
Issues with long-term care, long-term care insurance, and public policy
• Big Profits in Caring for the Elderly (David Leonhardt, Briefing, The Morning Newsletter, NY Times, 12-4-23) In the U.S., companies seek high profits in the long-term care industry. The American health care system maximizes the profits of health care companies at the expense of families’ budgets. The Times series called Dying Broke examines the long-term care industry. One major part of the industry is known as assisted living, a name for facilities that are home to about 850,000 older Americans who need help with daily activities — like getting dressed or taking medications — but who don’t need constant nursing care.
---Dying Broke
Facing Financial Ruin as Costs Soar for Elder Care
(Reed Abelson and Jordan Rau, NY Times series, 12-4-23)
The United States has no coherent system for providing long-term care, leading many who are aging to struggle to stay independent or to rely on a patchwork of solutions. Articles in this series examine how the immense financial costs of long-term care drain older Americans and their families.
---‘I Wish I Had Known That No One Was Going to Help Me’ (11-24-23) Adult children discuss the trials of caring for their aging parents: unreliable agencies, a lack of help and dwindling financial resources.
---A Guide to Long-Term Care Insurance (11-22-23) Deciding when, or whether, to buy long-term care insurance can be complex. Here’s what to know.
---What to Know About Assisted Living (11-19-23) The facilities can look like luxury apartments or modest group homes, and can vary in pricing structures. Here’s a guide.
---What to Know About Home Care Services (12-2-23) Finding an aide to help an older person stay at home safely takes work. Here’s a guide.
---What Long-Term Care Looks Like Around the World (11-14-23) Most countries spend more than the United States on care, but middle class and affluent people still bear a substantial portion of the costs.
• Nursing home staffing crisis challenges hospitals, disrupts families (Kevin Miller, Press Herald 9-19-21) Four long-term care homes in Maine have announced they will close, displacing 120 residents. The ominous trend also means overburdened hospitals are losing a key lifeline for discharged patients.
• Long-term-care insurance policyholders face sharp premium hikes: ‘When do these increases end? There is no ceiling’ (Steve Jordon, Live Well Nebraska, Omaha World Herald, ) Donna Olesh doesn’t accept her insurance companies’ explanations of why, after several years of low rates and no rate changes, her long-term care insurance company has raised the rates sharply. "Rather, she thinks they started with low premiums to attract customers and now intend to raise rates indefinitely until customers drop out or agree to lower benefits." Must-read before you invest in this insurance. See especially side-bar along the left side, on Long-term care insurance basics.
• Many Americans Will Need Long-Term Care. Most Won’t be Able to Afford It. (Paula Span, NY Times, 5-10-19) Depending on how one defines the need, half to two-thirds of older Americans will eventually require long-term care. A decade from now, most middle-income seniors will not be able to pay the rising costs of independent or assisted living.
• Washington State Retools First-in-the-Nation Long-Term Care Benefit (Michelle Andrews, KHN, 4-18-22) Three years ago Washington state passed a first-in-the-nation law that created a long-term care benefit for residents who paid into a state fund. The benefit, which has a lifetime limit of $36,500, would have made a big difference during the first year after one woman's stroke. The woman needed a ramp built and other modifications made to her house, as well as a wheelchair and hospital bed. The extra money might also have made it easier for her daughter to hire caregivers. Instead, she gave up her technology sales job to look after her mom. “People are under this cloud of delusion that between your insurance and your retirement [income] you’re going to be fine,” she said. “They don’t understand all the things that insurance doesn’t cover.”
The WA Cares Fund, which was set to begin collecting money for the program with a mandatory payroll tax on workers in January, has been delayed while lawmakers made adjustments during the current legislative session. Payroll deductions will start in July 2023, and benefits will become available in July 2026. Other states are watching Washington closely as they weigh offering coverage for their own residents.
• For Older Patients, an ‘Afterworld’ of Hospital Care (Paula Span, The New Old Age, NY Times, 9-13-19) Long-term care hospitals tend to the sickest of patients, often near the end of their lives. Many will never return home.
• The Forgotten Middle: Many Middle-Income Seniors Will Have Insufficient Resources for Housing and Health Care (Caroline F. Pearson, Charlene C. Quinn, Sai Loganathan, A. Rupa Datta, Beth Burnham Mace, and David C. Grabowski, Health Affairs, April 2019) Unfortunately, most middle-income seniors will not have the financial resources required to pay for private seniors housing options, as they exist today. Innovations from policy makers and private-sector housing operators and their investors will be required to serve this middle-income cohort.
• The Failure of Long-Term Care: My family faces an impossible choice: caring for our mom, or building our future ( Kristina Brown, Washington Post, 10-31-19) "At age 16, when our 43-year-old mother lost the ability to walk, my life shifted to sleepless nights and baby monitors. Her disease progressed swiftly; soon she could no longer stand, eat or bathe without assistance. For six years, I provided 10 hours of care every day.... We are starting to run out of options: We could sell our home to qualify for state assistance; I could leave medical school to become a full-time caregiver for my mother. But taking these extreme, temporizing measures would only drive us further into a vicious cycle of financial instability."
• How Will the Aging Middle Class Afford Long Term Care? (Elder Law, Griboff Estate Planning, 5-10-2020)
• Long-Term Care in the Twenty-First Century; The Public and Private Roles (Mark Merlis Institute for Health Policy Solutions, Commonwealth Fund, Sept. 1999) Merlis presented two broad options for meeting society’s future long-term care needs. The first is to promote greater private responsibility by encouraging the purchase of long-term care insurance. The second is to increase the public role by supplementing—or replacing—Medicaid with a broader social insurance program. Political support for Medicaid long-term care spending exists in part because most middle-class people are at some risk of having to rely on the program in the future. In contrast, people with private coverage are less likely to be concerned with maintaining the stability of Medicaid or the quality of services it provides. If the current financing system is ultimately unsustainable, the partial security of expanded private coverage may merely distract from the task of developing a more equitable and rational way of meeting long-term care needs.
• New report looks at long-term care affordability, recommendations (Liz Seegert, Covering Health, AHCJ, 7-18-17). A report from the Bipartisan Policy Center (BPC), a nonprofit think tank, concludes that improving financing and delivery of long-term care is possible — even in today’s politically charged environment.Chernof thinks that creating a catastrophic coverage type program for long-term care might be a viable solution. ”It’s not as politically fraught as it sounds, you just have to be clear on how you’re going to pay for it,” he said A plan allowing for home- and community-based services which includes some home modifications, transportation, delivered meals and ADL services would be cost neutral, according to Chernof. It could actually take pressure off of Medicaid, by providing more flexible options for long-term care needs, without driving people into the safety net program. Home- and community-based supports, including unpaid care from family members, can keep people out of costly institutional care, yet many services must be paid for out of pocket, Chernof said.
• A new vision for long-term care (Howard G. Gleckman, Urban Institute, 7-15-15) This links to a full report; click through to read such articles as Roadblocks Ahead for Seniors Who Don't Drive and Placing Diagnosis Errors on the Policy Agenda
• Giving States A Tool To Improve Long-Term Services and Supports (Susan C. Reinhard, Wendy Fox-Grage, Ellen O'Brien, Health Affairs blog, 12-11-17) AARP’s Long-Term Services and Supports (LTSS) State Scorecard aims to pick up the pace of improving LTSS by providing comparable state data to benchmark performance, measure progress, identify areas for improvement, and improve lives. The Scorecard includes twenty-five indicators in five dimensions of performance: affordability and access, choice of setting and provider, quality of life and quality of care, support for family caregivers, and effective transitions.
• Long-Term Services and Supports: Changes and Challenges in Financing and Delivery (Deanna Okrent, Alliance for Health Reform). A toolkit about the aging of the population and current and future financing of long-term services and supports (LTSS). Provides many links to further research.
• National Study of Long-Term Care Providers (CDC's biennial study monitors trends in the major sectors of paid, regulated biennial study monitors trends in the major sectors of paid, regulated LTSS. It uses data from surveys of residential care communities and adult day services centers and administrative data on home health agencies, nursing homes and hospices. It provides statistical information to inform policymaking.
• How the Medicaid Debate Affects Long-Term Care Insurance Decisions (Ron Lieber, Your Money, NY Times, 7-14-17) "Medicaid is the backstop for retirees who run out of money but still need home-based care or must move into a nursing home. Medicare generally doesn’t cover those costs, and they are high enough that even people with many hundreds of thousands of dollars can end up spending everything they have the years before they die. The money for Medicaid comes from both the federal government and the states, and this week, the Bipartisan Policy Center in Washington had this to say about what the future holds: “States will not be able to sustain spending for long-term services and supports as baby boomers begin to need these services and supports.”...Most insurers have left the long-term care market, and many of the rest have raised prices significantly, both on existing policyholders and newcomers. READ THIS ARTICLE AND PAY ATTENTION TO YOUR FEDERAL POLITICIANS!
• The Long-Term Care Financing Crisis (The Heritage Foundation)
• Medicaid and Long-Term Services and Supports: A Primer (Erica L. Reaves and MaryBeth Musumeci, Kaiser Family Foundation, 12-15-15)
• Fine Print and Red Tape in Long-Term Care Policies (Tara Siegel Bernard, Your Money, NY Times, 6-7-13) “With all of the hurdles, trying to get a claim paid can be like an Olympic event,” Mr. Rosenfield said. “The bottom line is that practices vary widely from company to company and state to state. And whether you can trust the company depends on regulation in that state — and most states have limited regulation.”
• No Easy Answers on Financing Long-Term Care (Judith Graham, New Old Age, NY Times, 9-19-13) "The federal Long-Term Care Commission published its full report on Wednesday, but it did little to change the perception that substantial relief for caregivers will be a long time coming." Geriatrician Joanne Lynne "believes that it’s a mistake to separate long-term care from broader reforms of Medicare and the health care delivery system." " The two primary financing options considered by the commission share “some commonalities,” said the commission chairman, "including agreement on the need for strong public programs and a role for the private sector." “If you look carefully at these two perspectives, you can begin to see a way forward.”
• The Challenge of Financing Long-term Care (Judith Feder, Urban Institute, 6-3-15). Click on link under Journal Citations to get to full article (PDF).
• Medi-Cal Long-Term Care: Safety Net or Hammock? (PDF of report from Pacific Research Institute with Center for Long-Term Care Reform)
• How to Fix LTC Insurance (Michael Kitces, Financial Planning, 1-21-15)
• Changing Family Caregiver Dynamics Ramp Up the Importance of Long-Term Care Planning (Jamie Hopkins, Forbes, 7-28-14) "Men typically need long-term care services for 2.2 years and women for 3.7 years. “Recently, insurers have come to understand that women are a higher risk for care claims, and in 2013 most introduced gender-specific rates with premiums for women being priced substantially higher than those for men,” says Newman. ...Clients need to understand the limitations on Medicare long-term care coverage and the asset requirements to qualify for Medicaid covered services."
• Pitfalls Seen in a Turn to Privately Run Long-Term Care (Nina Bernstein, NY Times, 3-6-14) At least 26 states are rolling out mandatory programs that put billions of public dollars into privately managed long-term care plans, in hopes of keeping people in their homes longer, and expanding alternatives to nursing homes....hidden pitfalls as the system of caring for the frail comes under the twin pressures of cost containment and profit motive. In many cases, care was denied after needs grew costlier — including care that people would have received under the old system." "Like many advocates, he originally supported managed long-term care, seeing it as a way to break the stranglehold of nursing home lobbies that opposed shifting more Medicaid money to home and community-based care. But now he says too high a price is being paid by very debilitated people denied care when they need it most."
• Insured for old age? An economist explains the dangers of long-term care insurance (Lewis Mandell, PBS Newshour, 1-15-14) "The most critical thing to realize is the total amount that such a policy will pay you if you remain in a nursing home for the three full years (after your first 90 uncompensated days): just $164,250, unadjusted for inflation. That’s $150 a day times 365 days in a year times three years. Therefore, if you have that amount in liquid assets per person (money not needed to fund core expenses), you can self-insure for that three-year period." "In spite of paying expensive premiums for many years, some individuals who are “covered” by long-term care insurance policies are surprised to find their claim denied by their insurance company....carefully consider whether its likely benefits are worth the costs."
• Long-Term Care Insurance Can Baffle, With Complex Policies and Costs (John F. Wasik, Retiring, NY Times, 12-18-15) Premiums have increased sharply, and comparisons are difficult, which helps explain why only 20% of those over 65 own a policy. Experts advise consulting an elder law attorney and fee-only financial planner who doesn’t make money from recommending the policies. That’s the best way to receive an objective — and nuanced — evaluation on whether this product makes sense for you.
• One more chance to decide on federal long-term care insurance (Michelle Singletary, WaPo, 9-30-16) When federal long-term health care insurance premiums jump from $285 a month to over $560, or $136 to $400, some feel lowballed by previous premiums. Many people with privately obtained long-term care insurance policies have received similar notices of steep jumps in premiums.
• Dodge the Long-Term Care Insurance Mess (William Baldwin, Forbes, 3-29-13). Do read this one before buying a policy. "From the buyer’s perspective, LTC insurance has three defects, at least when you compare it to the conspicuous alternative, a longevity annuity. The latter is an investment that pays out a fixed monthly sum beginning when the buyer reaches some advanced age, like 80."
• Fine Print and Red Tape in Long-Term Care Policies (Tara Siegel Bernard, NY Times, Your Money, 6-7-13) Long-term care insurance policies aren't like common insurance policies, and that can lead to unexpected requirements, mountains of paperwork, and denied claims. If you need to file a claim on behalf of a loved one, it helps to know why claims are denied and where filers tend to get tripped up (surveyed in this article). Practices vary from company to company and state to state, whether you can trust the company depends on regulation in that state, and most states have limited regulation.
• Long-term care rate hike stuns retirees (Victoria Colliver, SFGate, 2-25-13)
Organizations focused on long-term care
and long-term care insurance
• American Association for Long-Term Care Insurance
• Association of Health Care Journalists (AHCJ) resource links (for health care journalists but parts are accessible by consumers)
• California Partnership for Long-Term Care
• Commonwealth Fund State Scorecard on Long Term Services and Support
• LongTermCare.gov (Medicare's site on long-term care)
• National Care Planning Council Guide to Long-Term Care Planning
• National Clearinghouse for Long-Term Care Information U.S. Dept of Health & Human Services
• State Long-Term Care Partnership Program The Long-Term Care Partnership Program is a federally-supported, state-operated initiative that allows individuals who purchase a qualified long term care insurance policy or coverage to protect a portion of their assets that they would typically need to spend down prior to qualifying for Medicaid coverage. Four states originally pioneered this concept several years ago: California, Connecticut, Indiana and New York. The federal government permitted the expansion of this program and laid out the basic guidelines in the Deficit Reduction Act of 2005. Now each state can decide, individually, whether to participate.