Housing options for seniors and disabled(eldercare, changing attitudes, managing disability)
• Senior housing options (the big picture)
• The legal aspects of community volunteer activities
HOME-BASED SOLUTIONS
• Aging in place
(including NORCs, naturally occurring retirement communities)
• Cohousing
• Continuing care retirement communities (CCRCs)
• Home sharing
• Multigenerational living
• Tiny houses, minimalism, and the small-home movement
• Villages (aging in place supported communities)
FACILITY-BASED SOLUTIONS
• Assisted living
• The Eden Alternative and the Green House Project
• Long term acute care hospitals (LTACs)
• Memory Care
• Nursing homes, old and new
HELPFUL DEVICES, SUPPORTS, APPROACHES
• Assistive devices, remodeling, and other ways to enable independent living
• 1. Devices to make everyday life safer and easier
• 2. Organizations and sites helpful for improving life for seniors and the disabled
• Senior health problems, surgery, aches and pains
PROBLEM SOLVING ON BIG ISSUES
• Homelessness
• Spotting and dealing with elder abuse
• End-of-life decision-making in the critical care unit (on its own page)
• Downsizing, moving, decluttering, and other hard-to-face realities (on its own page)
See also
Advance directives, living wills, and other practical matters
The Beneficial Effects of Life Story Activities
Dealing with disability
Hospitals and hospitalization
Long-term care and long-term care insurance
Managing pain
Medical mysteries and patient stories
Housing options: the big picture
• Atul Gawande: "We Have Medicalized Aging, and That Experiment Is Failing Us" Michael Mechanic interviews Gawande, Mother Jones, 10-7-14) Nursing homes and assisted living facilities that over-dwell on safety fail the residents by taking too much choice and pleasure out of their hands. For example, "Introducing animals into a nursing home brought residents 'out of their shells...They became more active. They also lived longer."
• Senior Housing Options (HelpGuide.org, an independent nonprofit that runs one of the world’s leading mental health websites) Continuing Care Retirement Communities (CCRCs) are senior housing facilities that include independent living, assisted living, and nursing home care in one location. Assessing your senior housing options (aging in place, independent living, assisted living facilities, and nursing homes--the terminology can vary from region to region).
A “village” or NORC can range from a single age-integrated apartment building to a housing complex or an even wider community of one- or two-family homes. Members of the “village” can access specialized programs and services.
• 9 Things to Know About Homeowner Associations (Amy Fontinelle, Investopedia, 9-29-23) Explanations and pros and cons. Homeowner associations (HOAs) are entities that enforce the rules for living in a community that chooses to be governed. They are common in planned developments.Restrictive rules and high fees are just some things to watch out for. Many condos, co-ops, and neighborhoods have homeowner associations (HOAs) made up of member residents. Homeowner associations create covenants, conditions, and restrictions (CC&Rs) and enforce them.
• Wider Horizons Housing Options (a PDF worth downloading) This excellent free online handbook provides useful answers when considering whether to stay where you are living by adapting your home to make it safe and manageable or to move to a different housing situation that meets your evolving needs.
Logically laying out the options,with details on each option:
SECTION I: STAY IN YOUR CURRENT HOME
Stay Fit
Make adaptations to your home
(especially helpful, including assistive technolog such as Alexa, fitbit, )
Share your home with others
Add an Accessory Dwelling Unit (ADU)
Hire help or a caregiver
The PACE Program
Join a Virtual Village
SECTION II: MOVE TO AN INDEPENDENT HOUSING OPTION Apartment or Condo
Living with Relatives
Active Aging Community
Share a Co-owned Home
Modular Homes on a Co-owned Lot
Cooperative Housing
Formal Co-housing
SECTION III: MOVE TO A HOME WITH SERVICES
Life Plan Community
Assisted Living
Adult Family Homes
Skilled Nursing Facilities
SECTION IV: MEMORY CARE
• Eldercare locator (download helpful brochures on employment options for elders, hospital-to-home transition, housing options for seniors, Medicines for you (a guide for older adults), prescription drug options, staying in touch in crisis, transportation options for mobility independence, and staying warm and safe in the winter.
• Eldercare Locator , a public service of the U.S. Administration on Aging connecting you to services for older adults and their families. Call or text them at 1-800-677-1116 (Monday-Friday, 8am-9pm EST). A hugely helpful website.
---Long-Term Care Planning Older Americans Act (OAA) programs provide home and community-based services through state, tribal, and local agencies in each state to individuals age 60 and over. Information about:
---Long Term Care.gov
---NIA-Long Term Care Long term care information from the National Institute on Aging, National Institutes of Health.
---Medicare.gov – Long-Term Care (home- and community-based services, accessory dwelling units (ADU), subsidized senior housing, continuing care retirement communities (CCRCs), group living arrangements, hospice and respite care,PACE (Program of All-inclusive Care for the Elderly)
---Advance Care Planning Fact Sheets
---Guide to Long Term Care for Veterans
• Aging in Place: Home Care Services for Seniors (HelpGuide.org)
• Senior Care guides State by state, learn about community demographics, senior housing, long term care choices, healthcare quality ratings, and more.
•***Practical angles on living with a disability (practical devices, housing, resources, sources, tips) Tips on making your home safe and liveable.
• Aunt Bertha, an online database and easy-to-use search tool that makes it easy to find need-based social service programs related to needs for food, health care, housing, education, and employment programs. “There’s almost a paralysis of choice, there’s so many choices,” says Aunt Bertha's founder, Erine Gray, a trim, young programmer who studied economics and computer science as an undergraduate and has a master’s degree from the LBJ School of Public Affairs. “People just can’t find stuff. They end up getting scared and intimidated. Agencies are bad at creating their own websites.” (‘Aunt Bertha’ site helps those in need find aid (Omar Gallagha, Austin American-Statesman).
• At 80, She Is the Defiant Editor of ‘The Buzz’ (John Leland, NY Times, 1-14-2021) Many retirement communities have declined to name names during the pandemic. Residents of a retirement community in New York had no idea which neighbors or employees were sick with the virus, which had died, which had moved out or been exposed during a visit to the doctor. Management refused to provide names, citing privacy laws. So Diana Wiener started a newsletter to do just that.
• Five myths about long-term care (Howard Gleckman, WaPo, 9-17-2020) Note especially: Traditional Medicare does not pay for long-term care.
• We’re Getting Old, but We’re Not Doing Anything About It (Susan Jacoby, NY Times, 12-23-19) Like climate change, the aging of America demands a serious rethinking of the way we live. When dementia strikes, all bets are off because even if there is a child who desperately wants to keep his or her sick parents at home, it becomes increasingly difficult, if not impossible, to do so without home health care aides — which, again, Medicare usually generally does not pay for. The problem is not just the shortcomings of Medicare, or the inadequate savings of many Americans, or the absence of effective treatment for Alzheimer’s. It is all of those things.
• ‘This will be catastrophic’: Maine families face elder boom, worker shortage in preview of nation’s future (Jeff Stein, WaPo, 8-14-19) With private help now bid up to $50 an hour, Janet and her two sisters have been forced to do what millions of families in a rapidly aging America have done: take up second, unpaid jobs caring full time for their mother."We do not know what to do. We do not know where to go. We are in such dire need of help.”
• Senior Housing: Your Guide to Assisted Living Facilities, Independent Living, and Other Housing Options (HelpGuide.org) Excellent explanations of and distinctions between a "village" or a NORC (Naturally Occurring Retirement Community)
• California fire: If you stay, you’re dead. How a Paradise nursing home evacuated (Maria L. La Ganga, LA Times, 11-17-18) How do you evacuate a nursing home when the deadliest wildfire in California history is bearing down and there are 91 men and women to move to safety — patients in need of walkers or wheelchairs or confined to hospital beds, suffering from dementia, recovering from strokes? The fire is coming fast. Help is not.
• Grow Old Like ‘The Golden Girls’ (sociologist Amy Blackstone, NY Times, 6-7-19) We can’t all depend on adult children to stave off loneliness. College-style living — “minus the keg stands” — can help. Blackstone (the author of Childfree by Choice: The Movement Redefining Family and Creating a New Age of Independence) touches lightly on such variations in communal living as cohousing and multigenerational cohousing.
• Check out How to Start a Golden Girls Home by Bonnie Moore and Sharing Housing: A Guidebook for Finding and Keeping Good Housemates by Annamarie Pluhar -- and similar titles those links will lead you to.
• Long-term care: Early planning pays off (Mayo Clinic staff) Helpful overview of types of long-term care: Home care, day program, senior housing, assisted living, continuing-care retirement community, nursing home. Plus what to consider when choosing a long-term care facility, and discouraging info on costs.
• Long-Term Care and What You Need to Know (Families USA) Key issues: Medicaid, Affordable Care Act. Topics: Home and community-based services, long-term care, seniors.
• Come of Age: The Case for Elderhood in a Time of Trouble Stephen Jenkinson. "...old folks now seek out for succor the disease management arm of that very social order that prescribed diminishment and a fading of the light for their days. They look up as from a daze, awash in the suddenness of it all, dumbfounded that their middle age has abandoned them without notice, that their lives are the nightmare stuff of continuing care institutions." Jenkinson makes the case that we must birth a new generation of elders, one poised and willing to be true stewards of the planet and its species.
• How to Tame Health Care Spending? Here’s a One-Percent Solution (Margot Sanger-Katz, NY Times, 8-27-18) Maybe the answer isn’t something big, a group of economists is suggesting, but rather many small tweaks, such as reining in long-term care hospitals. "A working paper published Monday proposes a possible 1 percent fix.
In the 1980s, Congress carved out a small group of hospitals from its normal rules for payment. These “long-term care hospitals,” which treated patients with tuberculosis and chronic diseases, could earn far more money than traditional hospitals and nursing homes if they cared for patients who stayed with them for an average of 25 days. Since then, the number of these hospitals has mushroomed, from a few dozen to more than 400, most run by two for-profit chains." One study found that when"such a hospital opened, the odds increased that very sick patients leaving a normal hospital would end up going next to a long-term care hospital, generating a growing bill for both Medicare and the patients themselves.
But the researchers found no benefit when it came to patients’ chances of dying or going home within 90 days. The researchers concluded that the health care system could probably save a lot of money — around $5 billion a year — by paying the long-term care hospitals the same prices that are paid to skilled nursing facilities, the places that most long-term patients end up in when there is no long-term care hospital nearby."
• Alternatives to nursing homes (Nursing Home Compare, Medicare.gov)
• Glossary of terms (LongTermCare.gov)
• Online Reviews of Senior Housing Options, With Caveats (Ann Carrns, Bucks, NY Times, 4-8-13) Read the comments as well as the piece.
• Nursing Home Compare (Medicare.gov)
• National Association of Area Agencies on Aging (n4a) (see what's available in your county)
• A Place for Mom, this housing referral service for older adults has introduced an affiliated site aimed at providing consumer reviews of senior care locations: SeniorAdvisor.com . Care locations are organized by type, such as assisted living, independent living, senior apartments and skilled nursing homes. See comments under Ann Carrns story on senior housing options.
• Housing Options for Older Adults (download PDF booklet, Eldercare.gov -- or read online)
• How We Live Now: Redefining Home and Family in the 21st Century by Bella DePaulo. "DePaulo's cross-country survey of living arrangements shatters the illusion that the average American belongs to a nuclear family living in a single-family home in the suburbs. "DePaulo's descriptions of these living arrangements are punctuated with quotes from her extensive interviews with 'the people who let me into their homes and their lives,' providing the book with a wide range of voices." (Publishers Weekly)
• Retirement Living Information Center (provides links to reports on great places to retire, tax information on each state, monthly reports on new retirement communities, an online newsletter, books and online publications, a guide to state aging agencies, access to information about special assistive products and services, and links to online stores.
• Sober living housing options (no drugs or alcohol allowed)
• Aging Solo: Okay, I don’t have a child to help me, but I do have a plan (Sheila Sullivan Zubrod, WaPo, 8-15-16) "Location is HUGE to anyone aging solo....I had flourished in Washington, Los Angeles and Manhattan, but never realized all three were rich in museums, parks, mass transit, theater and all manner of unmarrieds. In Tampa, culture meant children’s museums. There were no foreign films or documentaries, no world-class museums, no opening nights for new plays. People’s lives and leisure time revolved around their children. Single friends seemed like an afterthought....Remember this: When you’re past 50 and single, location is 75 percent of the enchilada. Subways matter. Proximity to friends matters....It’s better to plan a more personal assisted-living future with your own friends while in your 50s or 60s. That will give you time to choose a location with diverse people and culture, with neighborhoods that have sidewalks and public transit."
• New Push to Keep Seniors in Home, Community-Based Programs (Alejandra Cancino, Associated Press, ABC News, 4-4-16) The federal government is pushing states to keep more low-income seniors out of nursing homes and, instead, enroll them in home and community-based programs. The cornerstone of home and community-based programs is personal care services, such as providing an aide who helps with cooking or cleaning. Those services cost a fraction of nursing home care.
• Global Age-Friendly Cities: A Guide (PDF booklet, World Health Organization, or WHO)
• Checklist of Essential Features of
Age-friendly Cities (PDF, WHO)
• The 8 Domains of Livability: Case Studies (AARP) The eight domains of livability are: Outdoor spaces and buildings, transportation, housing, social participation, respect and social inclusion, civic participation and employment, communication and information, community and health services.
• AARP Livability Fact Sheets (PDF, AARP) This PDF booklet of several factsheets was created by AARP Livable Communities and the Walkable and Livable Communities Institute. The two organizations have the shared goal of helping towns, cities and communities nationwide to become safer, healthier, more walkable and overall livable for people of all ages.
• Remaining in your home as you age (Aota.org) Are you planning to remain in your own home as you grow older? Are you finding it more difficult to manage some daily tasks in your home? Do you or your family and friends have safety concerns about you living alone? A few tips (a PDF you can read online) from occupational therapy practitioners who work with older adults to help them stay in their
homes.
• America Has a Major Misconception On Aging (SeniorCare.com infographic) What Percentage of Americans Will Need Long-Term Care? A third think they will. Two-thirds actually will. It's time for a senior care reality check. Senior care means more than nursing homes.
• Senior Guides in Local Communities (scroll down to find a box listing states, click on your state, see a list of cities, click on the city of your choice, and you will find a LOT of information about what is available there. There are guides for almost every city in the country, listing helpful
elder resources and a breakdown of healthcare quality and services available for senior citizens in any area. It is not easy to find at first, but it seems very useful.)
• Multigenerational Living Is Back and That’s a Good Thing ( Sherri Snelling, Next Avenue, 10-6-16) A renewed interdependence can be healthy for children and older adults.
• 'Elder Orphans' Have A Harder Time Aging In Place (Carol Marak, Next Avenue, Forbes, 9-8-16)
• The Babayagas’ house, a feminist alternative to old people’s homes, opens in Paris (Alison Hird, Radio France Internationale, "The World and All Its Voices," 5-3-13) The building houses 25 self-contained flats. 21 are adapted for the elderly and four are reserved for students. Residents were selected partly in relation to what they could contribute to the “community” and the extent to which they shared the Babayaga philosophy. They prefer to be compared with the slow food movement. “Slow ageing? Why not!” “We want to exchange ideas, take what’s best out there.”
• LongTermCare.gov ("Find your path forward. It's more than just insurance.") Questions addressed: Who is long-term care? Who needs it? How much care will you need? Where Can You Receive Care? Who pays for long-term care? Long-term care considerations for LGBT adults. Alzheimer's.
• Avoiding a fall.
• Two-Thirds of Today's Retirees Say They're Living in the Best Home of Their Lives: New Study Shatters Stereotypes (Ken Dychtwald, Huff Post, 2-25-15). Part 1 of 2-part series. Part 2: Housing in Later Life: New Freedoms to Choose (2-26-15) Housing choices include assisted living communities, continuing care retirement communities (CCRCs), cohousing, innovative systems like the Village model.
• The most and least tax-friendly states for retirees (Kiplinger, October 2016)
• The Housing Project That Keeps Older Residents Out of the ER (David Gorn, Next Avenue, 6-10-16) This low-income residents' program in downtown Oakland, Calif., is called Neighbors Helping Neighbors. It’s part of an ambitious plan to help older residents, many of them Asian immigrants, take control of their health — in part by joining at least one of 14 groups intended to enhance their physical and mental well-being.
• PACE. Program of All-Inclusive Care for the Elderly, or PACE. provides comprehensive medical and social services to certain frail, community-dwelling elderly individuals, most of whom are dually eligible for Medicare and Medicaid benefits . An interdisciplinary team of health professionals provides PACE participants with coordinated care. For most participants, the comprehensive service package enables them to remain in the community rather than receive care in a nursing home. Financing for the program is capped, which allows providers to deliver all services participants need rather than only those reimbursable under Medicare and Medicaid fee-for-service plans. PACE is a program under Medicare, and states can elect to provide PACE services to Medicaid beneficiaries as an optional Medicaid benefit. The PACE program becomes the sole source of Medicaid and Medicare benefits for PACE participants.
Issues with private equity taking over eldercare facilities
• Britain’s Hard Lessons From Handing Elder Care Over to Private Equity (Christine Spolar, KHN, 9-27-22) A little over a decade ago, Four Seasons Health Care was among the largest long-term care home companies in Britain, operating 500 sites with 20,000 residents and more than 60 specialist centers. Domestic and global private equity investors had supercharged the company’s growth, betting that the rising needs of aging Britons would yield big returns. Within weeks, the Four Seasons brand may be finished. Christie & Co., a commercial real estate broker, splashed a summer sale across its website that signaled the demise: The last 111 Four Seasons facilities in England, Scotland, and Jersey were on the market. Already sold were its 29 homes in Northern Ireland.
In a country where government health care is a right, the Four Seasons story exemplifies the high-stakes rise — and, ultimately, fall — of private equity investment in health and social services. Hanging over society’s most vulnerable patients, these heavily leveraged deals failed to account for the cost of their care. Private equity firms are known for making a profit on quick-turnaround investments.
• As The For-Profit World Moves Into An Elder Care Program, Some Worry (Sarah Varney, Kaiser Health News, 8-24-16) Inside a senior center in Denver, dozens of elderly men and women — some in wheelchairs, others whose hands tremble involuntarily — gather excitedly around the game tables. This is one of eight vanguard centers owned by InnovAge, a company based in Denver with ambitious plans. With the support of private equity money, InnovAge aims to aggressively expand a little-known Medicare program that will pay to keep older and disabled Americans out of nursing homes. Until recently, only nonprofits were allowed to run programs like these. But a year ago, the government flipped the switch, opening the program to for-profit companies as well, ending one of the last remaining holdouts to commercialism in health care. Hanging over all the promise, though, is the question of whether for-profit companies are well-suited to this line of work, long the province of nonprofit do-gooders. Even the program’s supporters acknowledge that the movement needs fresh momentum. But they worry that commercial operators will tarnish their image in the same way many for-profits eroded trust in hospice care and nursing homes.
• Searching for Security (Kelly Greene, WSJ, 3-17-10) How to tell whether a continuing-care community will be able to keep its financial promises
• Staying Out of the Closet In Old Age (Anna Gorman, Kaiser Health News, 10-17-16) LGBT seniors are not strangers to nursing homes. The difference now is that there is a growing recognition of the need to make the homes safe and welcoming for them.
• Aging Independently: A Chapel Hill Perspective (PDF, Bill Herzog, Glenn Wilson, and Nan Rideout, NCMedical Journal, Mar/April 2010). Three different types of support systems have developed across the country to meet the special needs of seniors who choose to live independently in their own homes: (1) the “Beacon Hill” or village model; (2) naturally occurring retirement communities; and, more recently, (3) university-based retirement communities....There are three general levels of need within the Chapel Hill community: those who have the financial resources and income to choose to enroll in one of the local CCRCs or live independently; those in a large middle-income group—some who could afford the CCRC option, some not; and a significant number who live at or near the poverty level.... One senior physician in our first focus group provided an insight that has guided much of our planning by pointing out that two strong motivators among the elderly are the striving to be independent and in control of their own lives and the desire not to be a burden on their children or society. Another participant added a third common motivation, that of the need to “continue to be of some use, to continue to making a contribution of some kind.”
• Rising Challenger Takes On Elder-Care System (Lucette Lagnado, WSJ, 6-24-08, in Democratic Underground. Thanks to a grant from the Robert Wood Johnson Foundation, the country's fourth-largest philanthropy for throwing its considerable weight behind a 48-year-old physician's vision of "Green Houses," a movement to replace large nursing homes with small, homelike facilities for 10 to 12 residents. The $122 billion nursing-home industry arose from the 1965 birth of Medicare and Medicaid, the government health-insurance programs for the elderly and poor that provide billions in government reimbursements. The industry has suffered through so many scandals involving patient care that many elderly shun the thought of entering such institutions. Assisted living, an ambitious effort begun in the 1980s to allow seniors to live independently in apartments and other group settings, has proved very popular but it "serves the needs of people who are relatively wealthy and relatively healthy," says Dr. Thomas, the man behind the Green House movement. Generally licensed as nursing homes, Green Houses are designed to provide a full range of care to the very sick.
• The Purposeless Life (Steve Moran, Senior Housing Forum, 6-13-16) All too many senior residence organizations fail to recognize the talent and knowledge of their residents, and don't let them get involved with the running of the community. An organization called In2l.com ("It's Never Too Late") tries to break down barriers and enable all residents, including those with memory loss, to share their world with caregivers and family members.
• Best Cities for Successful Aging (PDF, Anusuya Chatterjee and Jaque King, Milken Institute, 2014)
• America Has a Major Misconception On Aging (SeniorCare.com infographic) What Percentage of Americans Will Need Long-Term Care? A third think they will. Two-thirds actually will. It's time for a senior care reality check. Senior care means more than nursing homes.
• Time for New Thinking for the Age of Longevity (Richard Eisenberg, Next Avenue, 10-6-16) The bleak narrative about aging is bogus, says Rosalind Barnett, co-author of 'The Age of Longevity.' When you’re older, you have a lot of life experience and you’re not afraid of failing as much. This stage of life can have some of the excitement of adolescence without the uncertainty and doubt.
• Retirement in a Community, but Which One? (Harriet Edleson, NY Times, 3-6-15) An active adult community typically does not include any centralized dining options or health care options while a continuing care retirement community typically includes independent living options, assisted-living accommodations and some type of health care component
• Home in Retirement: More Freedom, New Choices Merrill Lynch/Age Wave study looks at how freedom from work, shifting family dynamics, fewer home-related expenses and unprecedented longevity are empowering retirees to pursue a home that fits their desired lifestyle and changing priorities.'
• Online Reviews of Senior Housing Options, With Caveats (Ann Carrns, Bucks, NY Times, 4-8-13)
• “Just Shoot Me” Isn’t a Plan (Ellen Rand, Last Comforts, on viable alternatives to conventional nursing homes, with a focus more on “home” than on “nursing” in design, operation and management. Ellen's forthcoming book: Notes from the Forefront of Late-Life Care
• Captain of His Destiny: The Man Who Has Lived on a Cruise Ship for 13 Years (Irene S. Levine, Forbes, 21-1-18)
• Elder Orphans: A Baby Boomer's Aging-Alone Plan (Carol Marak, Elder Orphans, Huff Post, 1-4-16) he matters that need attention in retirement
• Step One in the Aging-Alone Plan, learn the stages (Carol Marak, Elder Orphans, Huff Post, 1-14-16)
• For A Long And Healthy Life, It Matters Where You Live (Richard Knox, NPR Shots, 7-18-13). Hawaiians can expect 16 years of healthy life after 65; Mississippians, less than 11 years.)
• Pioneer Network (advocates for culture change in eldercare models, from long-term nursing home care to short-term transitional care to community-based care)
• Independent Living Is Exposing Elderly To Eviction Threat (Motoko Rich, NY Times, 2-15-14) A growing group of elderly people is "fighting for the right to age how, and where, they choose. A host of challenges, social and legal, awaits them."
• Someone on the Line (Paula Span, NY Times, 10-8-10). Span reviews services provided through the Eldercare Locator toll-free number, (800) 677-1116, finds it hard to get through, and worries that callers are referred to local agencies, whose usefulness may vary.
• How a parent’s health-care bills could hurt you (Elizabeth O'Brien, MarketWatch, Wall Street Journal, 7-10-14) Misunderstanding the fine print could leave you on the hook for elder-care costs " The best way to separate your responsibility as power of attorney from any personal financial obligation is to sign your parent’s name as the responsible party on the contract, and after that write, “by [your name] as power of attorney,” followed by the date, said Bradley J. Frigon, an elder law attorney in Denver and president of the National Academy of Elder Law Attorneys."
• In Coming Decades, Fewer Caregivers (Judith Graham, New Old Age, NY Times, 8-26-13) Who will care for me when I’m old?
• Coming Together to Make Aging a Little Easier (Elizabeth Pope, NY Times 9-15-11). Innovative approaches to managing some of the difficulties of aging are bubbling up around the country, often initiated by women who want to stay independent. Pope writes about The Caring Collaborative, a project initiated by The Transition Network in New York, which has created a number of helpful, downloadable manuals, including Creating a caring collaborative and Creating a vertical village in a high-rise building.
• 'Worse For Care': When Eldercare Homes Flout The Rules, Managers Aren't Held Responsible (Emily Corwin, Vermont Public Radio,12-11-19) "Vermont's 133 state-licensed assisted living and residential care homes are entrusted with more than 3,000 elderly or disabled residents but receive minimal state oversight. While these homes' administrators wield considerable power over staff and residents, they are rarely held to account when things go wrong. Unlike administrators of federally regulated nursing homes, those in charge of state-licensed residential care homes needn't have a license or much training....an administrator found unfit to manage a nursing home could become responsible for similar residents at a home overseen by the state....An analysis by Vermont Public Radio and Seven Days of more than 2,000 regulatory citations issued to assisted living and residential care homes shows widespread failure to maintain adequate staffing, make background checks, and report abuse or neglect." See also Low Pay, Tough Work and Turnover Bedevil Vermont's Eldercare Workforce Derek Brouwer, VPR, 12-4-19) Caregivers are in high demand as more Vermonters reach old age; the state's population is on pace to become one of the very oldest in the country. There aren't nearly enough people who want to care for the elderly.
• Elder Care: Resources for Seniors and Family Providers (NANHA, National Association of Nursing Home Attorneys) Excellent, useful links, especially about elder abuse.
• Multigenerational Housing May Be A Good Move (Sally Abrahms, AARP Bulletin) Three generations under one roof, known as multigenerational housing, is on the rise. "“It used to be older people whose money had run out who were living with their children, and now it’s the next generation that can’t keep up,” says Louis Tenenbaum, a founder of the Aging in Place Institute, which promotes “multigen” remodeling.
• Why This 21-Year-Old Loves Living in a Retirement Home (Yagana Shah, HuffPost, 2-19-16) A pilot artist-in-residence program is giving a college senior free housing and a rich intergenerational experience. And the residents love it.
• Finding Your Niche Housing in Retirement or Before! (Sally Abrahms, AARP Bulletin) Gay and lesbian retirement communities are just "one part of the growing trend of niche or affinity retirement communities, where people who share similar interests, religions, professional backgrounds or lifestyles decide to live in the same place." Interesting affinity groups mentioned!
• Roommates are a financial lifeline for some seniors (Martha C. White, Retirement, CNBC May 2014)
• PACE (Medicare.gov) PACE is a Medicare and Medicaid program that helps people meet their health care needs in the community instead of going to a nursing home or other care facility. PACE stands for Programs of All-Inclusive Care for the Elderly. Go here to learn if there is a PACE program in your state.
• Do Seniors Turn to the Right Places at End of Life? (Andrew Seaman, Reuters, 10-1-12). Palliative or hospice care, associated with hospices, should be incorporated into Medicare’s nursing home benefits; nursing homes are typically geared to rehabilitation and long-term care, not comfort care.
• Moving Toward Person- and Family-Centered Care (Lynn Feinberg, Public Policy Institute, AARP, March 2012)
• How to Choose Between Home Health Care, Assisted Living, and a Nursing Home (Ilana Polyak, Health.com)
• Hospice care and palliative care (a full set of links to various aspects of comfort care for the dying)
• Compare Cost of Care Across the United States (helpful Genworth database, showing median costs, per state, of home care, adult day health care, assisted living facility, nursing home)
• Assisted Living and Nursing Home Costs (Bill Fay ("Frugal Man"), Debt.org)
• Costs of long-term care (LongTermCare.gov)
• John Hancock survey of long-term health care costs (2013). Calculating the cost of care locally (based on figures from Hancock survey)
• Elder Abuse: A National Tragedy (Ashley Carson Cottingham, Compassion & Choices). A rarely discussed form of elder abuse occurs when an older adult’s expressed wishes at the end of life are ignored, and as a result they are subjected to unwanted and invasive medical treatment. See section on Preventing elder abuse and scams
"How does one keep from "growing old inside"? Surely only in community. The only way to make friends with time is to stay friends with people…. Taking community seriously not only gives us the companionship we need, it also relieves us of the notion that we are indispensable."
~ Robert McAfee Brown[Back to Top]
Nursing Homes
Old-Style and New, During the Pandemic
• AARP's Nursing Home issue Click on the label Nursing Homes along top and that should bring up a dozen or more articles.
• Nursing Home Compare (Medicare.gov--find a nursing home near you. Read Appleby article first)
• Find and compare a nursing home near you (Medicare.gov, Nursing Home Compare).
• U.S. News & World Report nursing home ratings poke holes in CMS ratings (Liz Seegert, Covering Health, AHCJ, 11-23-22) U.S. News & World Report recently released its 2022-2023 nursing home ratings, which revealed major differences in its assessments compared with the Centers for Medicare and Medicaid’s (CMS) star rating system. The media company found that only a small portion of the nation’s 15,000 nursing homes were high performing in short- or long-term rehabilitation, and only a few hundred were high performing in both.
While CMS’s most recent ratings show 4,261 short-term and 5,080 long-term facilities received five stars, the U.S. News analysis found only 1,658 homes were high performing in short-term rehabilitation, 1,103 homes were high performing in long-term care and 335 were high performing in both. In one example, 25 homes that CMS called “five star,” U.S. News rated as only one out of five. And more than 3,600 nursing homes received four or five stars from CMS, but only one, two or three out of five from the U.S. News.
• Best Nursing Homes in 2022-2023 (U.S. News)
• Find Nursing Homes Near Me (Family Assets). Let me know if you find this different (better or worse) than Medicare's site.
• PACE (Medicare.gov) PACE is a Medicare and Medicaid program that helps people meet their health care needs in the community instead of going to a nursing home or other care facility. PACE stands for Programs of All-Inclusive Care for the Elderly. Go here to learn if there is a PACE program in your state.
• With Current Staffing Levels, About 1 in 5 Nursing Facilities Would Meet Fully-Implemented Minimum Staffing Standards in the Final Rule (Priya Chidambaram, Alice Burns, Tricia Neuman, and Robin Rudowitz, Kaiser Health News, 4-22-24)
The Centers for Medicare and Medicaid Services (CMS) released a highly-anticipated final rule that creates new requirements for nurse staffing levels in nursing facilities, settings that provide medical and personal care services for 1.2 million Americans, and for which the adequacy of staffing has been a longstanding issue. The nursing home industry suggested the rule was too onerous, given staffing shortages and costs, and could lead to nursing facility closures, while resident and family advocates suggested the proposed standards were too weak to address quality concerns. KFF estimates that 19% of nursing facilities would meet the minimum HPRD staffing standards under full implementation of the final rule with their current staffing levels (Figure 1).
• Medicaid Weighs Attaching Strings to Nursing Home Payments to Improve Patient Care (Susan Jaffe, KHN, 6-10-22) The Biden administration is considering a requirement that the nation’s 15,500 nursing homes spend most of their payments from Medicaid on direct care for residents and limit the amount that is used for operations, maintenance, and capital improvements or diverted to profits. If adopted, it would be the first time the federal government insists that nursing homes devote the majority of Medicaid dollars to caring for residents.
• ProPublica Adds Ownership Information to Our Nursing Home Database (Ruth Talbot, ProPublica, 12-20-23) It can be hard to determine who is ultimately responsible for the quality of care in a nursing home. ProPublica’s Nursing Home Inspect tool now has detailed information on who owns a facility and who is responsible for running it.
• Japan’s Deadly Combination: Climate Change and an Aging Society (Motoko Rich, Makiko Inoue and Hisako Ueno, NY Times, 7-9-20) Record-breaking rains in the country’s southernmost main island, which one week killed 62, have shown the vulnerability of people living in nursing homes. Nursing homes, especially those with small, overtaxed staffs, face particular challenges because of how difficult it can be to evacuate aging, frail people in the midst of disaster. The people most vulnerable to the risks of extreme weather are the elderly, of which Japan has the highest proportion in the world.
• In a Japanese Nursing Home, Some Workers Are Babies (Hikari Hida and John Yoon, NY Times, 9-1-22) They get paid in formula and diapers, and their work hours are flexible, in a program that connects people across generations and brightens lives.
• CMS cracks down on the nation’s poorest-performing nursing homes (Liz Seegert, Covering Health, AHCJ, 11-1-22) The Centers for Medicare & Medicaid Services (CMS) announced it is increasing scrutiny and oversight over the country's poorest-performing nursing facilities, to immediately improve the care they deliver. A series of revisions to the Special Focus Facility (SFF) Program will toughen requirements for completion of the program and increase enforcement actions for facilities that fail to demonstrate improvement. CMS is also calling on states to consider a facility's staffing level in determining which facilities enter the SFF Program.
• Why the US nursing home system is ‘in desperate need of an overhaul’ ( Liz Seegert, Covering Health, AHCJ, 4-14-22) A 600-page report from the National Academies of Sciences, Engineering and Medicine called for a revamping of how we care for, finance, and manage nursing homes in the United States, and an overhauling of how employees are hired and trained. The key goals recommended in the report: Strengthening the nursing home workforce, improving emergency preparedness, and increasing the transparency and accountability of nursing homes' finances, operations and ownership. The report: The National Imperative to Improve Nursing Home Quality: Honoring Our Commitment to Residents, Families, and Staff (2022)
• CAHPS Nursing Home Surveys — long-stay, discharged and family member data (Consumer Assessment of Healthcare Providers and Systems, AHCQ)
• The association of nursing home quality ratings and spread of COVID-19 (Journal of the American Geriatrics Society, 5-31-21)
• Government raising bar on ratings of nursing homes (Julie Appleby, Washington Post). About Nursing Home Compare: "...the star ratings, which debuted in December 2008, are lauded as an important tool, critics say they rely too heavily on self-reported data and allow a majority of homes to score high ratings." They don't fare so well on inspection reports.
• Data show almost 1,000 instances of Florida nursing home residents — some with dementia — exiting without supervision (Zachary Carnell and Arlette Garcia, WUFT/PBS, 8-2-22) Between 2017 and 2021, there were 993 instances of residents of Florida nursing homes exiting their facility without proper authorization or supervision, according to Florida Agency of Health Care Administration (AHCA) records. On average, that’s almost four “elopements” each week.
• Immediate Jeopardy: Death And Neglect Inside A Troubled California Nursing Home Chain (Elly Yu and Aaron Mendelson, LAist, 4-6-21)A large nursing home business — and the state-run system designed to regulate it — were failing California’s most vulnerable even before the pandemic struck, advocates and patient families said. That failure intensified as COVID-19 gripped the state. This story is part of 'Unprotected,' an ongoing series examining California's failures on nursing home oversight, done in collaboration with other nonprofit newsrooms.
---California oversight of nursing homes called ‘befuddling,’ ‘broken’ (Jocelyn Wiener, Cal Matters, 4-6-21)
---State Authorities Allowed Alleged Sexual Predator To Job-Hop Among San Diego Area Nursing Homes (Amita Sharma and Matthew Bowler, KPBS, 4-14-21) California Department of Public Health investigators knew that certified nursing assistant Matthew Fluckiger had been accused of sex crimes by women at multiple nursing homes in El Cajon and La Mesa. Yet, the agency waited years to revoke his license.
• At Nursing Homes, Long Waits for Results Render Covid Tests ‘Useless’ (Rachana Pradhan, KHN/USA Today, 2-2-22) The double whammy of slower turnaround times for lab-based PCR tests and a shortage of rapid antigen tests has strained facilities where quickly identifying infections is crucial for keeping a highly vulnerable population safe.
• What You Need to Know About Nursing Homes (Kenneth Terrell, AARP Bulletin, 10-26-17) New regulations, growing competition and frailer residents mean the industry must evolve. "The government did not address the need for staffing increases. Advocates had urged CMS to mandate that nursing homes have at least one nurse on site 24 hours a day (the current requirement is only eight hours). “Whenever you see a concern or problem in a nursing home, you can generally trace it back to inadequate staffing standards,” says Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care. “Until we fix that as a problem, we’ll not be able to improve the quality of care.... It’s very hard to find staff to work in nursing facilities, especially in rural areas."
• Comparison of Assisted Living vs Nursing Homes (SkilledNursingFacilities.org) An infographic with $numbers.
• Your Guide to Choosing a Nursing Home or Other Long-Term Care (Center for Medicare and Medicaid Services) Use the checklist on pages 26–32 to compare nursing homes.
• Skilled Nursing Facility Directory (SkilledNursingFacilities.org). Contains over 15,600 skilled nursing facilities in the United States. With explanation of Medicare Quality Data
• What Is a Nursing Home Ombudsman? (Nursing Home Abuse Justice) A place where you can Report nursing home abuse. (Call 855-910-6243.)
• Common Types of Nursing Home Abuse and Neglect (Marcel Sagar, ElderCare Matters, 5-30-19)
• Nursing Homes: Why They Cost So Much (Kimberly Blanton, Squared Away blog, 12-10-19) Prices are higher in markets where limited competition is combined with a high demand for beds. For-profit companies own about 70 percent of U.S. nursing homes. More than half of the for-profit facilities are chains, and these chains charge the lowest prices. "While the nonprofit chains are more expensive, they have also been shown to provide higher quality care, the researchers said. But the picture is more complex, because non-profits disproportionately attract people who can afford to pay directly for their care, rather than being covered by a government program. Taken together, "it is unclear whether not-for-profit chains are providing substantially higher quality or other community benefits to justify their tax-exempt status," the researchers said.
Blanton is talking about a new study in the journal Medical Care Research and Review on how much seniors pay out-of-pocket for facilities in eight states – California, Florida, Georgia, New York, Ohio, Oregon, Texas, and Vermont – found that prices across the board are rising at about two times the general inflation rate. (The Growth and Geographical Variation of Nursing Home Self-Pay Prices by Sean Shenghsiu Huang, Richard Hirth, Jane Banaszak-Holl, and Stephanie Yuan, Abstract, Michigan Retirement and Disability Research Center, 2019)
• Feeling Powerless, Families Bring Elderly Home in Pandemic (Adam Geller, Associated Press, 12-21-21) "By the time Bednarowski’s family brought her home they, and thousands more with loved ones in nursing facilities slammed by the pandemic, were desperate. After months of separation, Bednarowski had dropped 20 pounds. Her delight in other’s company had given way to a hollow stare. Her hair was filled with lice...."
• The nursing home staffing crisis right now is like nothing we've seen before (Rhitu Chatterjee, Coronavirus Crisis NPR, 1-20-22) "What we've learned with the pandemic is that when there are large [numbers] of COVID cases in the general population, COVID finds its way into skilled nursing facilities," says CEO of the industry group American Health Care Association... Deaths have also risen but nowhere near the months before Covid vaccines became available when nursing homes suffered terrible losses. Last week, there were 988 reported deaths among nursing home residents, only a fraction of the peak in deaths – over 6,000 – back in December, 2020. Staff outages due to infection is worsening the historic worker shortage that facilities were already grappling with. Slow uptake of Covid-19 vaccines among staff has added another layer to this problem....Many facilities are responding by closing wings and reducing the number of new patients they accept. That in turn is having an impact on hospitals and family caregivers."
• As Covid Hits Nursing Homes’ Finances, Town Residents Fight to Save Alzheimer’s Facility (Judith Graham, KHN, 1-4-22)
• After ‘Truly Appalling’ Death Toll in Nursing Homes, California Rethinks Their Funding (Samantha Young, 12-13-22) California wants to hold nursing homes accountable for the quality of care they provide by tying Medicaid funding more directly to performance. But the nursing home industry, an influential player in the Capitol, is gearing up for a fight.
• Families Complain as States Require Covid Testing for Nursing Home Visit (Judith Graham, California HealthLine, 1-19-22)
• Her Son Says She Was a Victim of Nursing Home Dumping. A Court Agrees (Jessica Ravitz, AARP, 4-19-21) The case of dementia patient Gloria Single could help the battle against a growing problem in long-term care. It's hard to say how often resident dumping happens because “it's a perfect crime,” said Kelly Bagby, an AARP Foundation attorney. “If you don't give people notice that they have due process rights, they don't appeal and there's no paper trail.”
• Uncovering Truths With Missing Data (Robert Gebeloff, Times Insider, NY Times, 12-23-21) A data journalist shares how he and a team of fellow Times reporters discovered serious flaws in the government’s system for rating nursing homes. "We discovered that thousands of serious problems that are uncovered during nursing home inspections — including sexual assault and dangerous lapses in infection control — are swept under the rug during a secretive appeals process, while others are often excluded because of technical glitches. As a result, the data — in this case, the citations issued after the inspections — do not show up in the rating system at all, keeping the public in the dark about major issues inspectors uncover."
• Nursing Homes Bleed Staff as Amazon Lures Low-Wage Workers With Prime Packages (Sarah Varney, KHN, 12-23-21) Already buckling from an exodus of pandemic-weary health care workers, nursing homes are losing entry-level nurses, dietary aides and housekeepers drawn to better-paying jobs at Amazon.
• Nursing Homes’ Flawed Business Model Worsens COVID Crisis (Harris Meyer, AARP, 12-7-20) COVID-19 has revealed--and worsened--weaknesses in nursing home finances. To understand the industry’s shortcomings, look at laws going back 85 years.
• What 2 Very Different Nursing Homes Learned From Fighting COVID-19 (Jessica Ravitz, AARP, 1-11-21) Pandemic forced these facilities to make immediate and lasting adjustments. His staff had done what they could with the information and testing protocols available. And while other institutions, like schools and churches, could go virtual, his residents had no place else to go. “It's not like you could shut us down.”
• 6 Shocking Statistics From a Year of COVID-19 in Nursing Homes (Emily Paulin, AARP, 2-25-21) More than 170,000 long-term care residents and staff have died
• Finding a Nursing Home: Don’t Wait Until You Need One to Do the Research (Deborah Schoch, AARP, 11-27-19)Some facilities have serious infection outbreaks, other potentially fatal flaws.
• With Vaccine Delivery Imminent, Nursing Homes Must Make a Strong Pitch to Residents (Judith Graham, KHN, 12-17-2020)
• Companies Pan for Marketing Gold in Vaccines (Sarah Kwon, KHN, 2-19-21) Some assisted living facilities, pharmacy chains and health care providers are luring new customers with covid shots. Among senior living facilities — which saw their largest drop in occupancy on record last year — some companies are marketing vaccinations to recruit residents. Sarah Ordover, owner of Assisted Living Locators Los Angeles, a referral agency, said many in her area are offering vaccines “as a sweetener” to prospective residents, sometimes if they agree to move in before a scheduled vaccination clinic.
•How to Choose Between Home Health Care, Assisted Living, and a Nursing Home (Money and Health, Health.com)
• An investment firm snapped up nursing homes during the pandemic. Employees say care suffered. (Rebecca Tan and Rachel Chason, Washington Post, 12-21-2020) "From April through July, the New Jersey-based Portopiccolo Group — which buys troubled nursing homes and tries to make them profitable — paid hundreds of millions of dollars to acquire facilities in Maryland, Virginia and elsewhere. The purchases drew scant scrutiny from regulators despite poor safety records at dozens of the company’s other nursing homes, including hefty fines for infection-control lapses and shortages of staff....The nursing homes are run by operating companies set up and financed by the firm, including Peak Healthcare, Accordius Health and Pelican Health."
• Private equity ownership is killing people at nursing homes (Dylan Scott, Vox, 2-22-21) When private equity firms acquire nursing homes, patients start to die more often, according to a new working paper published by the National Bureau of Economic Research. Private equity acquisitions lead to cuts in the number of hours that front-line nurses spend per day providing basic services to patients.
• Assisted Living vs. Nursing Homes: What’s the difference? (A Place for Mom)
• How can states keep nursing home residents safe during the pandemic? (Liz Seegert, Covering Health, AHCJ, 4-30-2020)
• When Looking for a Nursing Home, You May Get Little Help from Your Hospital (Jordan Rau, KHN, 12-20-16) Hospitals rarely help patients find the best nursing home. When they do advise, hospitals sometimes push their own facilities. "Even the worst nursing homes are nearly full because hospitals keep sending patients to them." ~ Michael Connors
Nursing home care is arguably the largest financial risk for the elderly without private or social insurance coverage. The annual out-of-pocket expenditure can easily exceed $70,000. Overall, nursing home prices have consistently outpaced both the consumer and medical care inflations, particularly in California and Oregon -- with faster price growth in markets where they have stricter capacity constraints and have higher for-profit market shares. Private-pay residents face greater financial burdens. They find that "nonprofit nursing homes have higher prices than for-profit nursing homes and that chain-affiliated nursing homes charge higher prices than nonchains counterparts." (But do they provide enough more value to warrant their tax status?)
• Do's and Don'ts of Nursing Home Contracts (Elder Care Law, Findlaw)
• The price of living longer: You could pay $100,000-plus a year for nursing home care (Michelle Singletary, WaPo, 11-18-18) "The survey found that a semi-private nursing home room was $89,297. The cost of an assisted-living facility was $48,000 a year. A home health aide could run $50,336 a year. Then there is the issue of how fast the cost of care is rising."
• How to Choose a Nursing Home (Toby Bilanow, NY Times 3-19-10) and Stressful but Vital: Picking a Nursing Home Walecia Konrad.
• Nursing Homes Are a Breeding-Ground for a Fatal Fungus (Matt Richtel and Andrew Jacobs, NY Times, 9-11-19) Candida auris, a highly contagious, drug-resistant fungus that has infected nearly 800 people since it arrived in the United States four years ago, with half of patients dying within 90 days. Drug-resistant germs of all types thrive in settings where severely ill and ventilated patients are prone to infection and often take multiple antibiotics, which can spur drug resistance. Nursing facilities and long-term hospitals are a dangerously weak link in the health care system, often understaffed and ill-equipped to enforce rigorous infection control, yet continuously cycling infected patients, or those who carry the germ, into hospitals and back again.
• Nurses Say Staffing Ratios In Long Term Care Facilities Are Unsafe (Portia Wofford, Nurse.org, 7-11-19)
• How are nursing homes doing when it comes to staffing? This tool helps you find out (Liz Seegert, Covering Health, AHCJ, 1-3-2020) "Every quarter, the Long Term Care Community Coalition publishes staffing information for every nursing home in the country. They recently released stats forNursing Home Staffing 2019 Q2, the most recent period reported by CMS. LTCCC is a New York state-based consortium of consumer, community, civic and professional organizations that focuses on systemic issues that affect the quality of care and dignity in long-term care."I found the site’s design and layout more user-friendly than Medicare’s Nursing Home Compare," writes Seegert. "And unlike NHC, you can look at information for more than three facilities at a time on LTCCC’s tool."
• Ratings for hospitals, doctors, surgeons, home health agencies, nursing homes
• Check Out Infection Records Of 15,000 U.S. Nursing Homes (KHN, 3-13-2020) More nursing homes have been faulted for failing to follow practices designed to prevent and control infections than for any other type of error.
• Look-Up: Infection Risk Factors At Nursing Homes Near You (Pinpointing sepsis risk, by site, KHN, 9-5-18)
• Medicare to Cut Payments to Nursing Homes Whose Patients End Up Back in the Hospital (Jordan Rau, NPR, Shots, 12-1-18)
• Trump Administration Eases Nursing Home Fines in Victory for Industry (Jordan Rau, NY Times, 12-24-17) The Trump administration is scaling back the use of fines against nursing homes that harm residents or place them in grave risk of injury, part of a broader relaxation of regulations under the president. The shift in the Medicare program's penalty protocols was requested by the nursing home industry. And yet:
• ‘Like A Ghost Town’: Erratic Nursing Home Staffing Revealed Through New Records (Jordan Rau, KHN, 7-13-18) New data reveal frequent and significant fluctuations in day-to-day staffing, with particularly large shortfalls on weekends. On the worst-staffed days at an average facility, the new data show, on-duty personnel cared for nearly twice as many residents as they did when the staffing roster was fullest.
• The Do’s and Don’ts of Signing a Nursing Home Admission Agreement as a Responsible Party (Henry C. Weatherby, ElderCare Matters, April 2014)
• 11-year-old girl granting wishes to nursing home residents (Steve Hartman, CBS News, 3-1-19) At a nursing home in northwest Arkansas, Ruby Chitsey went to work with her mother, and out of curiosity asking them if they could have any three things, what would they be. The most common answer: Vienna sausages. With a GoFundMe to cover costs, she began supplying many of those wishes, including electric razor, new shoes, Dr. Pepper, cheese, avocados, Ritz crackers, watermelon, and oranges. "Whether she knows it or not, Ruby is satisfying some much more basic human needs here, to be remembered, to be cherished especially by a child."
• 1,400 Nursing Homes Get Lower Medicare Ratings Because Of Staffing Concerns (Jordan Rau and Elizabeth Lucas, KHN, 7-30-18) Medicare said those homes either lacked a registered nurse for “a high number of days” over three months, provided data the government couldn’t verify or didn’t supply their payroll data at all. See also: Mining a New Data Set to Pinpoint Critical Staffing Issues in Skilled Nursing Facilities
(Jordan Rau, Neglect Unchecked, 7-30-18) Low staffing is a root cause of many injuries in nursing homes. Kaiser Health News senior correspondent Jordan Rau explains how he connected the dots between manpower and risk at facilities nationwide, using a federal tool known as the Payroll-Based Journal.
• Another critique of that rating system (Paula Span, The Fault in Our Stars, NY Times, 7-8-14) You need to visit to check a place out!
• GAO finds mixed results on nursing home quality (Liz Seegert, Covering Health, AHCJ, 9-12-18) The Centers for Medicare & Medicaid Services does not have adequate procedures in place to ensure potential abuse or neglect of Medicare beneficiaries in nursing homes are identified and reported, according to recent testimony from the HHS Office of the Inspector General (OIG).While the agency has taken some action, based on earlier OIG recommendations, it has not yet acted on the other suggestions to help consumers better understand nursing home quality and make distinctions between nursing homes. See Nursing Home Quality (Government Accountability Office report on Nursing Home Quality, 11-30-15) CMS should continue to improve data and oversight.
• Nursing Home Compare data
• The Nursing Home Rating System Gets A Reboot (Richard Eisenberg, Forbes, 2-24-15) 'Trouble is, Nursing Home Compare has had serious flaws that have made the facilities look like the children of Lake Wobegon (all “above average.”)' Now there's a new rating system. The problem is, nursing homes still rate themselves.
• Boulder County nursing homes staff at average or above, but some still below what research recommends (Madeline St. Amour, Longmont Times-McCall/Denver Post, 9-9-18) Finding a facility for either long-term care for an aging loved one or short-term rehabilitation following a surgery or an injury can be a daunting task. While a number of factors come into play when choosing where to go for care, experts say staffing is chief among them. Research shows staffing is one of the most important factors in quality care at nursing homes, but some experts say state and federal staffing requirements don’t meet the minimum standards that a 2001 study, along with subsequent research, determined necessary for basic quality care. 2001 report found that facilities needed a minimum of 4.1 hours of nursing care per patient per day to meet federal standards
• Complaints About Nursing Home Evictions Rise, And Regulators Take Note (Tara Siegel Bernard and Robert Pear, NY Times, 2-22-18) Six weeks after Deborah Zwaschka-Blansfield had the lower half of her left leg amputated, she received some news from the nursing home where she was recovering: Her insurance would no longer pay, and it was time to move on. The home wanted to release her to a homeless shelter or pay for a week in a motel. “That is not safe for me,” said Ms. Zwaschka-Blansfield, 59, who cannot walk and had hoped to stay in the home, north of Sacramento, until she could do more things for herself — like getting up if she fell. One reason for the evictions, legal advocates say, is that the residents’ better-paying Medicare
coverage is ending and will be replaced by Medicaid.
• How to Choose a Nursing Home (Toby Bilanow, Well, NY Times, 3-19-10)
• Stressful but Vital: Picking a Nursing Home (Walecia Konrad, NY Times, 3-20-10)
• How To Challenge A Nursing Home Eviction Notice, And Other Tips (Tara Siegel Bernard and Robert Pear, NY Times, 2-22-18) Many nursing home residents are unaware of their rights. So when these individuals face the threat of eviction, legal advocates say, many of them do not even realize they have the right to challenge their discharge. The Times story includes a list of several of those rights under federal law along with tips from lawyers and advocates who work on behalf of nursing home residents.
• At Florida Nursing Home, Many Calls for Help, but None That Made a Difference (Ellen Gabler, Sheri Fink and Vivian Yee NY Times, 9-23-17) Eight residents of the nursing home were dead by the end of that day, Sept. 13, and three who were among the 140 evacuated have died since. The Hollywood police have opened a criminal investigation, while the state has all but shut down the residence. Interviews show a preventable descent into the suffocating chaos of that early morning. The nursing home’s state-approved emergency plan was confounded by a foreseeable electrical failure....The risk to older and debilitated adults in the aftermath of hurricanes, especially in summer weather, should have been obvious. As people grow older, bodily systems that fight heat break down. People with common conditions such as heart trouble and diabetes are more susceptible to heat stroke, and those with dementia may not have the wherewithal to remove sweaters or blankets or to drink more to avoid dehydration. Drugs often used in nursing homes can also inhibit sweating, the body’s main defense.
• Medicare Takes Aim at Boomerang Hospitalizations of Nursing Home Patients (Jordan Rau, NPR, 6-13-18)
• Look-Up: Compare Nursing Homes’ Track Records On Boomerang Hospitalizations (Neglect Unchecked, Kaiser Health News, 6-12-18) Two routes out of a nursing home: Safely home or back to the hospital. Use this tool to see how your state's nursing homes compare on rehospitalization rate (% of Medicare short-stay residents who were re-hospitalized within 30 days after a nursing-home admission--lower % is better) and community discharge rate (% of Medicare short-stay residents who were successfully discharged to the community within 100 days of entry--higher % is better).
• Many Nursing Homes Aren't Prepared for Even Basic Emergencies (Jordan Rau, Shots, NPR, 9-19-17) It does not take a hurricane to put nursing home residents at risk when disaster strikes. Around the country, facilities have been caught unprepared for far more mundane contingencies, such as needing to get wheelchair-dependent people down the stairs in case of an evacuation. The system has some pretty good regulations but they aren't treated seriously and enforced. Many facilities don't inspect and test their generators regularly, for example.
• Care Suffers As More Nursing Homes Feed Money Into Corporate Webs (Jordan Rau, KHN and NY Times, Neglect Unchecked, 12-31-17) Increasingly, owners of nursing homes outsource services to companies in which they also have financial interest or control. That allows the nursing homes to claim to be in the red while owners reap hidden profits.
• Trump Administration Relaxes Financial Penalties Against Nursing Homes (Jordan Rau, KHN, 12-31-17) The Trump administration — reversing guidelines put in place under President Barack Obama — is scaling back the use of fines against nursing homes that harm residents or place them in grave risk of injury. The shift in the Medicare program’s penalty protocols was requested by the nursing home industry. Skilled nursing homes are among the most heavily regulated types of medical providers, yet they remain dangerous places for frail residents. Four of 10 were cited for harming a patient or putting them in jeopardy over a three-year period.
• Infection Lapses Rampant In Nursing Homes But Punishment Is Rare (Jordan Rau, KHN, 12-22-17) Basic steps to prevent infections — such as washing hands, isolating contagious patients and keeping ill nurses and aides from coming to work — are routinely ignored in the nation’s nursing homes, endangering residents and spreading hazardous germs.
• Why Glaring Quality Gaps Among Nursing Homes Are Likely To Grow If Medicaid Is Cut (Jordan Rau, KHN, 9-28-17) Medicaid covers about two-thirds of nursing home residents, but it pays less than other types of insurance.
• Nursing Homes Move into the Insurance Business (Jordan Rau, KHN, 7-13-17) Although proponents say the policies offered by nursing homes are more attuned to patients, some report frustrations when trying to dispute care decisions.
• In The End, Even The Middle Class Would Feel GOP Squeeze On Nursing Home Care (Jordan Rau, KHN, 6-27-17) Medicaid pays for two-thirds of nursing home residents, but some recipients don’t even know they’re on it.
• Half The Time, Nursing Homes Scrutinized On Safety By Medicare Are Still Treacherous (Jordan Rau, KHN, 7-6-17) Of the 528 nursing homes that graduated from special focus status before 2014 and are still operating, more than half — 52 percent — have harmed patients or operated in a way that put patients in serious jeopardy within the past three years, a KHN analysis finds.
• Nursing Home Checklist ( basic questions to ask when you and your loved one visit a nursing home, developed by National Caregivers Library)
• Care Suffers As More Nursing Homes Feed Money Into Corporate Webs (Jordan Rau, KHN, 12-31-17). "In what has become an increasingly common business arrangement, owners of nursing homes outsource a wide variety of goods and services to companies in which they have a financial interest or that they control. Nearly three-quarters of nursing homes in the United States — more than 11,000 — have such business dealings, known as related party transactions, according to an analysis of nursing home financial records by Kaiser Health News. Some homes even contract out basic functions like management or rent their own building from a sister corporation, saying it is simply an efficient way of running their businesses and can help minimize taxes. But these arrangements offer another advantage: Owners can establish highly favorable contracts in which their nursing homes pay more than they might in a competitive market. Owners then siphon off higher profits, which are not recorded on the nursing home’s accounts. Two Long Island men, Donald Denz and Norbert Bennett, and their families’ trusts collected distributions totaling $40 million from their chain’s $145 million in revenue over eight years....Such corporate webs bring owners a legal benefit, too: When a nursing home is sued, injured residents and their families have a much harder time collecting money from the related companies — the ones with the full coffers."
• Trump protects nursing homes at seniors' expense (Editorial, Des Moines Register, 6-13-17) Last week, the Centers for Medicare and Medicaid Services proposed a rule rescinding an Obama-era regulation prohibiting nursing homes from requiring patients and their families to sign binding arbitration agreements. "Fear of litigation encourages homes to hire adequate staff, train them and provide good care. Apparently homes have little to fear under the Trump administration. The same cannot be said for sick, disabled and elderly Americans."
• The Savvy Resident's Guide: Everything You Wanted to Know About Your Nursing Home Stay But Were Afraid to Ask by Eleanor Feldman Barbera
• Picking a Nursing Home Shouldn’t Be Trial and Error (Jane E. Brody, Well, NY Times 8-4-14) More expensive isn't necessarily better. Six things to look for in a nursing home, especially for dementia care.
• You’re In a Nursing Home. Now What? (Ellen Rand, Last Comforts blog, 6-7-16)
• The Cost of Nursing Home Care (Guide to Nursing Homes)
• Nursing Home Unthinkable? Be Prepared in Case It’s Inevitable (Jane E. Brody, NY Times, 7-28-14) "You may not want to place a loved one in a nursing home for more than a short-term recovery — but never promise an aging relative that it won’t happen."
• President Trump rolled back rules protecting residents of nursing homes. (Snopes.com) The NY Times reports: " The Trump administration is scaling back the use of fines against nursing homes that harm residents or place them in grave risk of injury, part of a broader relaxation of regulations under the president. The shift in the Medicare program’s penalty protocols was requested by the nursing home industry. The American Health Care Association, the industry’s main trade group, has complained that under President Barack Obama, federal inspectors focused excessively on catching wrongdoing rather than helping nursing homes improve."
• A pattern of profit and subpar care at Mass. nursing homes (Kay Lazar, Boston Globe, 3-27-16) "The story of the Personal Healthcare nursing homes finds echoes in facilities across Massachusetts, a Globe review shows. For-profit nursing homes often are cited for more health and safety problems than nonprofit homes, while they are far more likely to divert money to a web of affiliated companies. For-profit nursing homes, which constitute three-quarters of those in the state, frequently devote less money to nursing care, compared to nonprofit homes. "On forms they submit to the state, nursing homes frequently report they are losing money. But that’s only part of the story. A review of records from companies affiliated with the homes shows they are directing cash to subsidiaries and to help pay executives’ six-figure salaries." “These homes are making money on every single angle, they are hiding their profits, padding all their administrative costs, upping executive salaries,” Charlene Harrington said. (Lazar won an award for this story from the Association of Health Care Journalists, who published story about how she reported the story, with tips on investigate nursing homes in your area: Digging into nursing home data found correlation between spending, quality
America’s Other Drug Problem (Marshall Allen, Wasted Medicine, ProPublica, 4-27-17) Every year nursing homes nationwide flush, burn or throw out tons of valuable prescription drugs. Iowa collects them and gives them to needy patients for free. Most other states don’t.
• Nursing homes turn to eviction to drop difficult patients (Matt Sedensky, New York/AP, Seattle Times, 5-8-16) "Nursing homes are increasingly evicting their most challenging residents, testing protections for some of society’s most vulnerable. Those targeted for eviction are frequently poor and suffering from dementia, according to residents’ allies. They often put up little fight, their families unsure what to do. Removing them makes room for less labor-intensive and more profitable patients, critics of the tactic say, noting it can be shattering. Hospitalizations are a common time when facilities seek to purge residents, even though the Nursing Home Reform Act of 1987 guarantees Medicaid recipients’ beds must be held in their nursing homes during hospital stays of up to a week.
• Residents' Rights: An Overview (The National Consumer Voice for Quality Long-Term Care, April 2011)
• Old And Overmedicated: The Real Drug Problem In Nursing Homes (Ina Jaffe, Shots, Morning Edition, NPR, 12-8-14) Almost 300,000 nursing home residents are currently receiving antipsychotic drugs, usually to suppress the anxiety or aggression that can go with Alzheimer's disease and other dementia. Antipsychotics, however, are approved mainly to treat serious mental illnesses like schizophrenia and bipolar disorder. When it comes to dementia patients, the drugs have a black box warning, saying that they can increase the risk for heart failure, infections and death....Federal law prohibits the use of antipsychotics and other psychoactive drugs for the convenience of staff. It's called a "chemical restraint." There has to be a documented medical need for the drugs.For dementia patients, the drugs have a black box warning, saying that they can increase the risk for heart failure, infections and death....Antipsychotic drugs change behaviors, Williams says. "They blunt behaviors. They can cause sedation. It increases their risk for falls." And in the vast majority of cases, the drugs aren't necessary.'
• Choosing a Nursing Home: What to Look for, What to Ask (pdf, Alzheimer's Association, West Virginia Chapter)
• America's Best Nursing Homes (U.S. News & World Report -- notice step 1: Decide if a nursing home is necessary)
• Where Can You Get the Best Nursing Home Value in America? (Howard Gleckman, 6-25-14). A new study by AARP, the Commonwealth Fund, and the SCAN Foundation ranks the quality and affordability of nursing homes by state....according to some indicators, you get what you pay for: The states with the most affordable facilities are plagued by many poor performers.
• Nursing Homes Unmasked: How California’s largest nursing home chains perform (Part 1 of an outstanding 3-part series in the Sacramento Bee, by Marjie Lundstrom and Phillip Reese, 11-8-14) Part 2: Who owns California’s nursing homes? (11-9-14) Bottom line: Business people who are not concerned about quality of care, who see nursing facilities as a money-making operation "with no real interest in – or intuition for – the practice of providing care,” claim that chains provide efficiencies--boosting profits, but not enabling good patient care. “When you look at the facility itself, it’s losing money every month. So that’s telling you the building is underfunded. Every penny that comes in the door from the patients … gets swept up to corporate headquarters.” See Help for consumers: How to research California nursing homes (11-9-14)
• Lawmakers renew effort to crack down on bad nursing homes (Brian M. Rosenthal, Houston Chronicle, 2-22-17)
• Arkansas nursing homes high in medication errors (Hunter Field, Arkansas Online, 12-3-17) Watchdogs report 261 ‘significant’ medication mistakes from 2013-17
• What working in a nursing home taught me about life, death, and America’s cultural values (Valery Hazanov, Vox.com, 3-17-16) People in the nursing home like to watch TV. It's always on. How strange, then, that there are no old people on TV. What Hazanov learned: 1) At the end, only the important things remain; 2) Having a routine is key to happiness; 3) Old people have the same range of emotions as everyone else; 4) Old people are invisible in American culture; 5) The only distraction from pain is spiritual; 6) If you don't have kids, getting old is tough (the saddest people I see in the nursing home are childless.); 7) Think about how you want to die. "I think of death as a tour guide to my life -- "Look here; pay attention to this!"
• Biden Pledges Better Nursing Home Care, but He Likely Won’t Fast-Track It ( Rachana Pradhan and Harris Meyer, KHN, 3-3-22)
• Biden’s Promise of Better Nursing Home Care Will Require Many More Workers (Jordan Rau, KHN 3-2-22)
• Pivotal Nursing Home Suit Raises a Simple Question: Who Signed the Contract? Nursing homes have embraced arbitration clauses, which are often buried in complex contracts that are difficult to navigate, especially for elderly people with dwindling mental acuity or their relatives, who can be emotionally vulnerable when admitting a parent to a home. The son of a woman who died because a nursing home assigned her a dangerous roommate who subsequently killed her, will now have his day in court. Appeals courts across the country have been throwing out arbitration agreements signed by family members of nursing home residents.
• Nursing Home Care—The Great Challenge for the Celiac (Curtiss Ann Matlock, Celiac.com, 3-30-16, from Journal of Gluten Sensitivity Winter 2016 Issue) ""No. We just had a team meeting and it was decided we cannot accommodate your mother because of her diet....I hadn't realized that a nursing home would, or could, turn down a patient based on the need for a therapeutic diet. I thought the reason for a nursing home was to care for ill people....This is our new challenge—to make certain those elderly people with food sensitivity needs are well cared for." (Read the story and be forewarned.)
• Aggressive Neighbors in the Nursing Home (Paula Span, NY Times, 11-25-14)
• For Veterans, an Alternative to the Nursing Home (Alyson Martin and Nushin Rashidian, NY Times, 7-18-12). The Department of Veterans Affairs Medical Foster Home program places veterans who need round-the-clock care in private homes.
• In nursing homes, deaths are shrouded in secrecy and silence (Bob Tedeschi, Endnotes, Stat--Reporting from the frontiers of health and medicine, 1-14-16)
• Five Things to Consider When Selecting the Right Nursing Center for Elderly Parents (Kindred Healthcare, 8-6-13)
• Nursing Home Alternative Susan Dentzer (PBS Newshour, 2-27-02) reports on life at a different kind of nursing home. (From the Eden Alternative to the Green House.)
• The Promise, Practice, and Problems of the Eden Alternative (Long-Term Living, 12-1-03)
• Green Houses Offer Elders an Alternative (RWJF, Robert Wood Johnson Foundation) Many frail elders seek an alternative to the typical institutional-style nursing home. With more Green Houses taking root across the United States, that alternative is getting closer to home....Nursing home quality and affordability vary widely across states, and they only sometimes have much to do with one another."
• Move Over Nursing Homes — There's Something Different: Green Houses (Ina Jaffe, All Things Considered, NPR, 7-24-13). Typically each elder will have a private room and/or a private bathroom.
• The Green House Nursing Home Alternative (video, Green House as outgrowth of the Eden Alternative)
• A Nursing Home Shrinks Until It Feels Like a Home (Laurie Tarkan, NY Times, 10-31-11). Echoes days later in A Home for Those Who Hate Nursing Homes
• In Nursing Homes, an Epidemic of Poor Dental Hygiene (Catherine Saint Louis, NY Times, 8-4-13)
• A New Disaster Looming for Nursing Homes? (Senior Housing Forum, 3-9-15) New small, luxurious skilled nursing operations that provide complex high intensity rehabilitation therapy services to individuals fresh out of the hospital are proving a boon to hospitals and patients, but these boutique-style high-end operations are a threat to the traditional nursing home. "What makes older skilled nursing communities work is that while they mostly care for long-term Medicaid residents they have a large enough group of high paying Medicare/HMO residents that make the bottom line profitable. These new models will ultimately reduce the number of high revenue residents in many skilled nursing communities to a level that will put their financial viability at substantial jeopardy."
• Supreme Court to Hear Nursing Home Case That Could Affect Millions (Farah Yousry, Side Effects Public Media, KHN, 11-7-22) When Susie Talevski sued the agency that managed her elderly father’s care before he died, she hoped to get justice for her family. She did not expect the case would grow into a national bellwether. A ruling against her could strip millions of vulnerable Americans of their power to hold states accountable when they do not receive benefits allowed by law. So, the public health agency made an unexpected move. It took the case to the nation’s highest court and posed a sweeping question: Should people who depend on initiatives funded in part by the federal government — such as Medicaid and programs that provide services for nutrition, housing, and disabilities — be allowed to sue states when they believe their rights have been violated?In court filings, the Talevski family claims that Gorgi Talevski was overmedicated to keep him asleep, his dementia wasn’t properly managed, and he was involuntarily transferred to different facilities hours away from the family’s home, which accelerated his decline. Her father died a year ago, in October.
So, the public health agency made an unexpected move. It took the case to the nation’s highest court and posed a sweeping question: Should people who depend on initiatives funded in part by the federal government — such as Medicaid and programs that provide services for nutrition, housing, and disabilities — be allowed to sue states when they believe their rights have been violated?
• Bullying Is Ageless: Conflict And Violence Widespread In Nursing Homes, Study Finds (Nell Lake, CommonHealth Reform and Reality, WBUR, 11-14-14)
• CNN investigation exposes inappropriate use of drug in nursing homes (Blake Ellis and Melanie Hicken; Data analysis by Sergio Hernandez, CNN Investigates, 10-12-17) "The maker of a little red pill intended to treat a rare condition is raking in hundreds of millions of dollars a year as it aggressively targets frail and elderly nursing home residents for whom the drug may be unnecessary or even unsafe, a CNN investigation has found. And much of the money is coming straight from the federal government.The pill, called Nuedexta, is approved to treat a disorder marked by sudden and uncontrollable laughing or crying -- known as pseudobulbar affect, or PBA. This condition afflicts less than 1% of all Americans, based on a calculation using the drugmaker's own figures, and it is most commonly associated with people who have multiple sclerosis (MS) or ALS, also known as Lou Gehrig's disease. Nuedexta's financial success, however, is being propelled by a sales force focused on expanding the drug's use among elderly patients suffering from dementia and Alzheimer's disease, and high-volume prescribing and advocacy efforts by doctors receiving payments from the company, CNN found."
HOME-BASED SOLUTIONS
Aging in Place
Scroll down for entries on Naturally occurring retirement centers (NORCs). See also Villages
• Aging in Place: Growing Old at Home (National Institute on Aging)
• Aging In Place Without Breaking the Bank or Compromising Your Health (The Kojo Nnandi Show, 9-17-18) Kojo interviews people from The Retirement Living Sourcebook, Prince George's Aging & Disabilities Resource Center, the DC Office on Aging, and the Village-to-Village Network about various options for living in place in the Washington, D.C. area. Listen online.
• 5 Benefits of Aging in Place (Retirement Living, 7-16-19) Aging in place costs less, is more comfortable, helps slow the advancement of memory loss, strengthens your social network, and supports self-determination. Explained. See also 7 Services to Make Aging in Place Easier (1-3-19) and The Cost of Aging in Place Remodeling (7-16-19)
• Aging in Place: Rethinking Solutions to the Home Care Challenge (MetLife report by Louis Tanenbaum, Sept. 2010). You can download the report (PDF) and the workbook, free.
• Find a home health agency (Medicare. gov, Home Health Compare) Type in your zip code or City, state)
• Aging in Place (AARP website, National Council for Aging Care)
• Tips for living life to its fullest: Remaining in your home as you age (American Occupational Therapy Association, AOTA)
• Community Aging in Place—Advancing Better Living for Elders (CAPABLE). This is a Johns Hopkins research study designed to help seniors live more comfortably and safely in their homes. The CAPABLE research study works to address the needs of older adults through small adjustments (e.g.: handrail installment) and larger investments, as needed, to help ensure each participant's needs are met. The goals of the program are to help older adults remain in their homes longer, improve health outcomes, and decrease medical costs. Researcher Sarah Szanton describes CAPABLE as providing "handyman services with nursing and occupational therapy to improve mobility, reduce disability, and decrease healthcare costs."
• Fire Preparedness: A Guide For Individuals With Disabilities (Ryan Fitzgerald, Uphomes, 11-27-21) Fire is the third most common leading cause of death in the home. Cooking accidents in the kitchen are the most common causes of fire in residential areas. Have an evacuation plan in place and get early warning signs from a smoke detector. A thorough guide, especially if any family member has a disability (which could include aging!).
• Connected to the Community: Current Aging-in-Place Choices (Susan Poor, SecondJourney) Excellent history and overview, with explanations of many options, including Aging in Place, "Continuum of Care," skilled nursing facilities (formerly nursing homes and often not very skilled), assisted living facilities, Congregate Care Facilities (combine private living apartments with centralized dining services, shared common spaces, and some LTSS), Continuing Care Retirement Communities (CCRCs), CCRCs Without Walls, Green Houses, Alternative Assisted Living Facilities, Section 202 Supportive Housing for the Elderly (the only federally funded housing program specifically for low-income seniors), Villages, Age-restricted communities, Naturally Occurring Retirement Communities (NORCs), Accessory Dwelling Units (ADUs, a type of housing created or added to a single family home or built separately on a lot, "granny flats," etc.), Shared Housing, Cohousing or Cluster Housing, Senior Cooperative Housing, Community-based services (PACE, hospice, senior centers, adult day centers). Plus links to Innovative Community Models and various ways of sharing the caregiving, such as Share the Care, Lotsa Helping Hands, Time Banks, Tyze Networks, The Transition Network's Caring Collaborative.
• The Future of Retirement Communities: Walkable and Urban (John F. Wasik, Retiring, NY Times, 10-14-16) A new paradigm: the walkable, urban space. Pedestrian-friendly communities promote walking to a grocery store, cafe or other services such as a dry cleaner or library.
• Managing hospitalization and after
• Managing chronic pain
• Managing ordinary (not chronic) pain
• Communities Seek to Be Age Friendly (Susan B. Garland, Kiplinger Retirement Report, Oct. 2016) More retirees are looking for places to call home that can accommodate their wants and needs, but aren't assisted living facilities. Garland provides a great overview of initiatives and factors to improve the quality of life of older adults, including "Lifelong Communities," proximity to services and other people, "zoning codes to encourage multi-family housing near shops, senior centers and entertainment," age-friendly communities with "walkable amenities and convenient transportation,” and Purposeful Aging departments to consider "changes in regulations to increase affordable senior housing, an expansion of wellness programs, and strategies to promote employment of older residents."
• Walk Score. Plug in an address to learn a neighborhood's walkability and availability of public transportation.
• Where to find help when you’re grappling with an aging parent’s needs (Alisa Schindler, WaPo, 2-29-16) Places you can turn for expertise, help and understanding include senior advocates at the local office on aging, nurse practitioners who make house calls, accessible ride services, senior/community centers, pharmacies that "package" ("blister packs" instead of several confusing bottles), senior housing, services such as Meals and Wheels provided by local charities and religious organizations, social workers (" they were the best resource! They gave me numbers, organizations, guidance, support."), and good friends.
• Share Common Ground (Sally Abrahms, AARP Bulletin) More boomers are opting for smaller neighborhoods with a bigger sense of community. “Not only are people looking for alternatives to the suburban model, but boomers want smaller, smarter, community-oriented living environments...;Instead of a street separating the $225,000-to-$400,000 homes that face one another, a landscaped courtyard divides them. Visitors walk to the front door of each home through a common walkway.” See Pocket Neighborhood slide show (AARP Bulletin, 5-3-12)
• Hospital at Home: Patient Care Model of the Future? (Jaimie Lazare, Aging Well, Vol. 6 No. 2 P 20, on Today's Geriatric Medicine) Treating acutely ill older adult patients diagnosed with conditions such as congestive heart failure (CHF) and chronic obstructive pulmonary disease (COPD) at home rather than in a hospital has many benefits: "lower costs, shorter duration of hospital-equivalent treatment, fewer procedures, reduced geriatric complications, improved activities of daily living, and better patient and caregiver satisfaction."
• At Home, Many Seniors Are Imprisoned by Their Independence (Paula Span, NY Times, 6-19-15) To keep older people in their homes, as Medicaid and other programs increasingly try to do, represents a laudable goal but an inadequate one. Aging in place also requires a variety of supportive services; creating or expanding them involves money, time and many moving parts. Remaining at home, however difficult or isolating that becomes, gives older people a sense of control that may prove illusory...Being homebound in rural areas can be harder and lonelier.
• NORC's Aging in Place Initiative. (NORC = naturally occurring retirement communities -- without walls). One page on this site shows location of NORC demonstration communities--more than 40 of them, in 25 states. (Jewish Federations of North America)
• Is a Naturally Occurring Retirement Community Right for You? (Philip Moeller, US News, 3-25-09) Good overview.
• Shaping the City: Aging and Neighborhoods Kojo Nnandi chats with architect and urban planner Roger Lewis about the “NORC” phenomenon and how it’s shaping the face of the Washington region.
• PACE4You (a program of all-inclusive care for the elderly) The focus of every PACE organization is to help you live in the community for as long as possible. To meet this goal, PACE organizations focus on preventive care. Although all people enrolled in PACE are eligible for nursing home care, only 7 percent live in nursing homes. PACE organizations support family members and other caregivers with caregiving training, support groups, and respite care to help families keep their loved ones in the community.
• As Caregiving Shifts To The Home, Scrutiny Is Lacking (Anna Gorman, KHN, 1-5-15) Prolonged abuse and neglect by In-Home Supportive Services (IHSS) caregivers is not surprising when low-paid caregivers are largely untrained and unsupervised, even when paid by the state.
• Frail Seniors Want To Live At Home. But Is it More Dangerous? Howard Gleckman (Forbes, 7-9-14) reports on a study that finds that seniors receiving care at home face both preventable and nonpreventable hospitalizations at significantly higher rates than nursing home residents, even though those in nursing facilities are often sicker than those in the community. Elders at home "were at greater risk of hospitalization for potentially preventable conditions...including congestive heart failure, pneumonia, dehydration, and urinary tract infections.... It may be that better medical care, in the form of house calls, community health centers, or other services, could reduce many of those preventable hospitalizations. Better training and more support for family caregivers could help as well."
• Understanding What Home Care Really Costs (Home Instead Senior Care)
• Home Health Agency Compare (Medicare.gov--find a home health care agency near you)
• Physician Compare (Medicare.gov--find a (geriatric) physician near you)
• Thriving 99-year-old is right at home in today's lively downtown L.A. (Steve Lopez, L.A.Times, 9-21-13). "The Markoffs lived comfortably in the lefty environs of Echo Park and Silver Lake for decades...but his driving wasn't so good, and the house was too much to manage. So they sold, bought a condo downtown in the same building as their daughter and 80-year-old son-in-law and got a surprise...."
• Staying Independent in Old Age, With a Little Help (Jane E. Brody, Wellness, NY Times, 12-24-12) Many older people need outside help long before they require round-the-clock care. "Needed changes at the community level include affordable small-scale housing and cluster housing situated in walkable communities with nearby amenities, businesses, health facilities and public transportation. Borrowing from the design of assisted living facilities, individual dwelling units might be located around a common space that includes dining areas and social rooms." Concludes with How to Know When Home Alone Is No Longer a Good Idea.
• Age in Place. The services you need for a life at home. National Aging in Place Council (an association of service providers)
• Community Aging in Place—Advancing Better Living for Elders (CAPABLE) (Johns Hopkins School of Nursing)
• Handymen, home care helps seniors trying to age in place (Lauran Neergaard, AP, 9-7-16) An innovative program that combined home fix-ups and visits from occupational therapists and nurses improved low-income seniors' ability to care for themselves in their own homes. CAPABLE — which stands for Community Aging in Place, Advancing Better Living for Elders — is a program testing modest home modifications and strategies for daily living. A double banister let people rest their weight on both sides to get up and down stairs safely. Handymen fixed trip hazards, installed grab bars and lowered shelves so seniors could reach without climbing. Occupational therapists bought assistive devices to help people with tremors feed themselves, and taught the frail how to get in and out of high-sided tubs. Still to be answered: Does better daily functioning save taxpayers dollars? In a previous article, no longer online, Neergaard wrote:
"The environment in which you live can be as disabling as a disease, and too often, older Americans wind up in a nursing home not because they’re super-sick but because they can’t get through their days safely at home. Now a major research project will bring handymen, occupational therapists and nurses into the homes of 800 low-income seniors in Baltimore to test if some inexpensive fix-ups and strategies for daily living can keep them independent longer, and save millions in taxpayer dollars spent on nursing home care."
• Sensors Help Keep the Elderly Safe, and at Home (John Leland, NY Times, 2-12-09)
• Seven 'Life Hacks' to Help Keep You Out of the Nursing Home (Jason Kane, PBS Newshour, 8-8-13). A low-vision keyboard, motion sensor lighting (to help you see when you get up at night), bed rails, zipper pull on your clothes, safety strips in your tub, tape for rugs--to prevent tripping).
• Babyboomer demand boosting universal home design (Realty Times)
• Age in Place (National Aging in Place Council)
• Aging in Place blog
• Aging-in-Place Remodeling Checklist (National Association of Home Builders)
• Disaster preparation and recovery resources (National Association of Home Builders)
The Village Movement:
Aging-in-place supported communities
"If you've seen one village, you've seen one village"
The first aging-in-place village formed in the Beacon Hill area of Boston, a grassroots effort begun by a dozen young elders that has now spread across the country in several hundred “villages.” After its spontaneous beginning, the village has prospered, strengthened by a national organization (the Village to Village Network), which mentors new villages and supports established villages. Villages are designed to help people age in place (without moving to assisted living and similar facilities).
Common features of aging-in-place villages: A membership organization that links people who need services with people who provide them. A one-call system to provide information and to match needs with volunteers to meet them. As one moves into retirement, a village helps provide effective social connections that parallel the camaraderie of the workplace--with more self-determination than one finds in an assisted living facility. Various activities or committees through which village members can support each other's life journeys.
Villages during the pandemic may be less active because giving seniors rides to things is one of a village's biggest benefits and those have been often suspended or at least limited for fear of spreading covid.
Wrote June Saunders in a Seniors Matter article that has disappeared: "Some people join Villages long before they need services themselves. They volunteer, knowing that when their time comes they will be paid back in kind. Some Villages, like Ashby Village in Berkeley, CA, have a network of volunteers outside the Village who fill in when needed." A few items below are geared to Montgomery County, MD, where I live, which is rich in villages, supported by a county-wide leader, Pazit Aviv; I include them because they help convey some the practical concepts involved.
• Senior villages weave a safety net for older adults (Jen Chien, KALW, 2-3-15) In this case, villages in California. "Members are encouraged to also be volunteers. Through the phone, email, or in-person visits, the village coordinates rides, referrals, and social activities. These are the little things that can help someone age in place. Studies have shown aging in place has great financial, psychological, and health benefits. But it can be hard to pull off, as people need more and more services as they get older."
Villages address needs that government can’t. Jacqueline Zimmer Jones is the executive director of NEXT. She says villages are not just a support for aging in place, but they also tackle the limited economic mobility of middle-class seniors. Many older adults bring in just enough to take them out of eligibility for government benefits. “If you have a lot of money, you can buy the services that you need,” says Jones. “But if you don’t, you could spend a lot of your resources just trying to get yourself back and forth to the doctor’s, that kind of thing.” In one village, a regularly scheduled Scrabble game is one way members forge connections, fight loneliness.
• Village to Village Network, a web-based network that shares ideas and mutual support. Villages join, to share ideas. See also V-to-V videos. Click here to find a village near you.
• Villages Research: Engaging Villages as Key Partners for Healthy Aging Research This website has information about a national initiative to strengthen capacity among Villages and researchers to design research on how to optimize Villages for healthy aging. It also has information about how Village members and leaders from across the United States can get involved.
Resources for fundraising, often needed to support village services:
---Village to Village Toolbox (invaluable)
---MatchDotDollars.org (click through items like "Resources" to find useful links).
• Generation X Volunteers Want to Help You, and One Day Themselves, Age at Home (Tammy La Gorce, Business section, NY Times, 3-13-22) The Village to Village Network assists older people with the services they need to remain in their homes. A younger generation is getting involved. 'Members of these grass-roots nonprofits band together to identify needs familiar to aging people, like shoveling snow or figuring out Zoom, and set up a network of volunteers and affordable professionals, like plumbers and electricians, to meet them. Social programs that might include lectures and exercise classes help chip away at isolation. Some villages have dozens of members, others hundreds. Some are run by volunteers, others by paid staff. They serve urban, suburban and rural areas. Most villages rely on member dues for at least half their funding, but some get donations and grants from the government and foundations."
'When Covid struck, Ms. Prunty and 30 fellow volunteers, many in their 50s with full-time jobs, organized soup deliveries and drive-by birthday parties. The goal was to assuage what she sensed was an epidemic of isolation and pride among locals in her father’s generation, in their 70s and 80s. “No one wanted to ask for help,” she said.'
• Despite Seniors’ Strong Desire to Age in Place, the Village Model Remains a Boutique Option (Judith Graham, KHN, 3-14-22) Today, there are 268 such villages with more than 40,000 members in the U.S., and an additional 70 are in development. But those numbers are a drop in the bucket given the needs of the nation’s 54 million older adults. And villages remain a boutique, not a mass-market, option for aging in place. Villages connect members to one another, hosting discussion groups, sponsoring outings, offering classes, and organizing social events. In practice, the fierce “we’ll do it our way” independence of villages, their reliance on a patchwork of funding (membership dues, small grants, and donations), and the difficulty of keeping volunteers and members engaged have been significant obstacles to growth. Can they move beyond their white, middle-class roots and attract a broader, more diverse membership?
• What is Helpful Village? (80-minute video webinar on this "easy-to-use village technology" -- an online course.
• RunMyVillage (software to schedule service requests, manage volunteers, create events, accept payments and more).
• Capturing member birthdates/ages and race: Race, Ethnicity, Nationality and Jellybeans (YouTube, 2-minute video explaining the difference between race, ethnicity, and nationality, as explained by Jellybeans. Helpful to know birthdate (even if approximate) so village can know age distribution in village, celebrate birthdays, and provide the birthdate usually asked at doctor's offices, to ensure right identity--for when taking a confused village member to a medical appointment. "You can frame the question as one that helps you best support your members. You could ask "what identities do you claim?' and then list some: Race -Ethnicity -Sexual orientation -Gender Identity -Partnership status - There may be others."
If village member doesn't want to give exact birthdate, have them provide one a couple of days off. (Add a flag to their records to say the birthdate is approximate so you won't use it for the third purpose.) --Village to Village Network members
• What is a village? What does the Village offer? Who creates the Village? (Montgomery County MD, Department of Health & Human Services) With links to further topics and some interviews.
• Retirees Turn to Virtual Villages for Mutual Support (Constance Gustke, NY Times, 11-28-14) Villages are " low-cost ways to age in place and delay going to costly assisted-living facilities... At the core of these villages is conciergelike service referrals for members...[who] can find household repair services, and sometimes even personal trainers, chefs or practitioners of Reiki...Most important, the villages foster social connections through activities like potlucks, happy hours and group trips."
• Baby boomers join ‘aging-at-home villages’ for yoga, happy hour, cooking classes and biking (Annie Groier, WaPo, 5-9-17) "Now, 15 years and some 220 villages after the first one was born in Boston, a move is afoot to woo and welcome the active 50+ set. Most of these folks still work and don’t need rides to the supermarket or help raking leaves. They have no use for the names of pre-screened health aides or note-takers for medical visits. Their main goal is a richer social life with others similarly situated. In short, they — and I, as it turned out — craved adult playmates for festive play dates — think organized hiking, wine tasting and cooking classes — with people from the ’hood....One major lure for social members is that dues are wholly or partially deductible as charitable contributions because they receive no services in return for their annual dues."
• Did You Know? (YouTube, 23-minute video about Montgomery County, MD, villages)
• Who’s the Boss? The Board or the Executive? (Jan Masaoka, Blue Avocado ("Nonprofits Helping Nonprofits"), 6-10-14) The answer: it depends on whether the board is acting as a body, or whether board members are acting as individuals. The key is remembering that the board is different from board members.
• When Aging-Services Providers and Villages Work Together (Dianne Molvig, LeadingAge, 9-13-15) The “village model” of member-driven, grass-roots neighborhood organizations is gaining in popularity. Providers of aging services (e.g., assisted living and skilled nursing organizations and other homes and services for the aging) are partnering with villages to help make aging in place easier for seniors. Examples of villages and senior services cooperating.
• ‘Village’ Movement for Aging Seniors Faces Some Challenges (Rachel Dornhelm, KQED, 11-7-14) Initial "results from a retrospective, three year study from UC Berkeley find support for many of the movement’s positive claims. But the data, being presented at the Gerontological Society of America conference, also raises flags about the communities’ diversity and sustainability." (The study was not yet finished at the time of this story.)
• Washington (DC) Area Villages Exchange (WAVE) Informal organization of DC, Maryland, and No. Virginia villages, which meet quarterly to share ideas and information. This part of the U.S. has a particularly rich concentration of villages. Through a growing number of senior villages in the D.C. area, aging in place becomes easier (Tara Bahrampour, Washington Post, 2-6-14). Sidebar: List of linked-to senior villages in the DC area.
• Villages Take Root Around Virginia (Marsha Mercer, AARP, 10-1-10)
• What is the Village movement? (Montgomery County, MD) What does the village offer? Who creates the village? Village blueprint.
• The Age-in-Place ‘Village’ Movement (Tracy Thompson, AARP, 5-9-17) Younger people are drawn to social aspects.
• Villages: Age in Place (Martha Thomas, AARP, May/June 2011) More than a neighborhood, a village gives older people a better chance to stay in their own home longer.
• Time banks build economies — and communities — without the almighty dollar (Justin Wm. Moyer, Wash Post, 4-26-19) A concept based on the “time dollar” — a currency in which an hour of work is worth an hour of work, whether it’s performed by a maid, a mechanic or a mechanical engineer. ‘I like giving the gift of time to other people.’
• North Carolina Tries Village Concept (Sue Price Johnson, AARP Bulletin, 6-1-10)
Legal concerns when you are forming a village
• Understanding Nonprofit Status and Tax Exemption (Section 4, Community Tool Box, Center for Community Health and Development at the University of Kansas)
• Risky Business: There’s liability for the acts of your volunteers (Siobhan Kelley, TheNonProfitTimes, 6-4-14)
• The Aging-in-Place Village Concept:Addressing Liability Concerns (Adrienne Lyon Buenavista, American Bar Association Commission on Law and Aging, Aug. 2012)
• Volunteer Protection Acts and Good Samaritan Laws fact sheet (Emergency Volunteer Toolkit, Association of State and Territorial Health Officials, ASTHO Legal Preparedness Series) "Of course, the most effective way to manage the risk of being sued is to reduce the risk of harm in the first place. Consider that your volunteers might expose the nonprofit to the same risks as employees, and treat them accordingly. Best practices include a comprehensive risk management program, volunteer training, informed safety procedures and a robust procedure for reporting concerns. Some insurance companies offer special discounts or programs available to help nonprofits reduce risk. While there is no silver bullet that eliminates all volunteer risk, you can protect your nonprofit and its board members by obtaining the appropriate insurance coverage and following best risk management practices."
• Volunteer Protection Act of 1997 (PDF, Government Printing Office)
• Volunteer Protection Acts and Good Samaritan Laws (PDF, Emergency Volunteer Toolkit, Association of State and Territorial Health Officials, ASTHO Legal Preparedness Series)
Multigenerational living
• Under one roof (Lois M. Collins, Deseret News, 4-14-21) In a time when ‘togetherness’ can feel tough, multigenerational households are on the rise. Three or more generations under one roof can be a family’s greatest blessing. Or its principal vexation. Sometimes, it’s both.
• Multigenerational Living Is Back and That’s a Good Thing (Sherri Snelling, Next Avenue, 10-6-16) "The downturn in 2007 to 2009 may have driven families to come together under one roof out of need, but today this increasing multigen living is by choice."-Donna Butts, Generations United. The Pew data shows this increase is largely based on adult children (defined by Pew as 25 years or older) living at home with mom and dad. A renewed interdependence can be healthy for children and older adults
• How to Make Multi-Generational Housing Work for Your Family (Beth Braverman, Forbes, 6-18-15) "There are myriad reasons that more American households now consist of two or more generations under one roof: Debt-saddled millennials can’t afford to move out on their own; boomers worried about their aging parents want to keep them close at hand; live-in grandparent babysitters can help offset the price of child-care; a rise in immigrant families for whom inter-generational living is the norm."
• All in the Family: A Practical Guide to Successful Multigenerational Living by Sharon Graham Niederhaus and John L. Graham. Why the return to interdependence within the extended family? “This is the way people have always lived around the world,” says Graham. This book covers the financial and emotional benefits of living together, proximity and privacy, designing and remodeling your home to accommodate adult children or elderly parents, overcoming cultural stigmas about interdependent living, financial and legal planning, and making cohabitation agreements.
• Multigenerational Households: The Benefits, and Perils (Ann Carrns, NY Times, 8-12-16) Pew defines a multigenerational household as one that includes two or more adult generations — say, baby boomer parents and their adult children — or one that includes grandparents and grandchildren. The benefits include sharing the expense of services; reducing travel costs visiting each other. Perils include loss of privacy.
• Multigenerational Homes That Fit Just Right (Janet Morrissey, NY Times, 4-8-16)
• Grandparents Who Move to Be Closer to Grandchildren (Harriet Edleson, NY Times, 6-26-15) What to think about before you take that big step.
• Shared Spaces resources (Generations United). See fuller publications list.
• Generations United webinars (includes educational and health care consent laws, legal relationship options and available financial resources, etc.)
• How to Function In a Multigenerational Household (WikiHow)
• All Children Deserve a Permanent Home (Pew Charitable Trust). This report released by Generations United includes state-by-state data on children living with relative caregivers and research on why subsidized guardianship is a common-sense solution for children in long-term foster care.
we grow old because we stop playing.” --George Bernard Shaw
Assisted living
(also called residential care)
• Senate Probes the Cost of Assisted Living and Its Burden on American Families (Jordan Rau, KFF Health News, 1-25-24) In the wake of a KFF Health News-New York Times series, members of the Special Committee on Aging are asking residents and their families to submit their bills and are calling for a Government Accountability Office study
• LATEST NEWS ON DYING BROKE (a KFF Health News and New York Times Series) KFF Health News and The New York Times examine how the immense financial costs of long-term care drain older Americans and their families,
---What to Know About Assisted Living (Jordan Rau, KFF Health News and New York Times, 11-20-23) The facilities can look like luxury apartments or modest group homes and can vary in pricing structures. Here’s a guide.
---Extra Fees Drive Assisted Living Profits (Jordan Rau, 11-20-23) These highly profitable facilities often charge $5,000 a month or more and then layer on fees at every step. The add-ons pile up: $93 for medications, $50 for cable TV. Prices soar as the industry leaves no service unbilled, out of reach for many families.
---Facing Financial Ruin as Costs Soar for Elder Care (Reed Abelson, The New York Times and Jordan Rau, 11-14-23) The United States has no coherent system of long-term care, leading many to struggle to stay independent or rely on a patchwork of solutions.
---Adult Children Discuss the Trials of Caring for Their Aging Parents (Reed Abelson, The New York Times and Jordan Rau, 11-14-23) The financial and emotional toll of providing and paying for long-term care is wreaking havoc on the lives of millions of Americans. Read about how a few families are navigating the challenges, in their own words.
---Why Long-Term Care Insurance Falls Short for So Many (Jordan Rau and JoNel Aleccia, KFF Health News,11-22-23)
---A Guide to Long-Term Care Insurance (Jordan Rau, 11-22-23)
---What to Know about Home Care Services (Reed Abelson, The New York Times, 12-4-23)
---‘Financial Ruin Is Baked Into the System’: Readers on the Costs of Long-Term Care ( Jordan Rau and Reed Abelson, The New York Times, 12-15-23) Thousands of readers reacted to the articles in the “Dying Broke” series about the financial burden of long-term care in the United States.
Washington Post series:
• Dozens of assisted-living residents died after wandering away unnoticed
(Christopher Rowland, Todd C. Frankel, Yeganeh Torbati, Julie Zauzmer Weil, Peter Whoriskey and Steven Rich, Washington Post, 12-17-23)
At 6 a.m. — more than eight hours later — staff finally went looking for Lynne Stewart, a 77-year-old Alzheimer’s patient with a history of wandering. They found her collapsed on the frozen ground near the exit, ice covering her body. She soon died at a nearby hospital from prolonged exposure.
[A few quotes from a long, important article:]
"Since 2018, more than 2,000 people have wandered away from assisted-living and dementia-care units or been left unattended outside, according to The Post’s exhaustive search of inspection results, incident reports and media accounts nationwide. Nearly 100 people died — though the exact number is unknowable because no one is counting. For many, the difference between life and death was simply the weather."
"Patients with Alzheimer's disease and other cognitive problems walk away from assisted-living facilities just about every day in America, a pattern of neglect by an industry that charges families an average of $6,000 a month for the explicit promise of safeguarding their loved ones, a Washington Post investigation has found.
"The federal government does not regulate the nation's roughly 30,000 assisted-care facilities, as it does nursing homes. Instead, regulation falls to individual states, few of which have adopted strong staffing and training requirements even as the industry estimates residents nationwide have climbed to more than 1 million, approaching the nursing home population of 1.2 million.
"The biggest financial risk facilities face usually comes from lawsuits. Those are typically covered by operators' insurance and settled for an average of about $350,000 for a fatal elopement, according to an insurance company that underwrites them.
"The group noted a difference between dementia-care units and other assisted-living units, which are less secure and allow many residents to come and go unsupervised. State regulators have cited both types of facilities for failures when residents suffering from dementia have walked away unnoticed....
"Federal lawmakers did pass one bill related to the industry, in 2008: It allows the tax-sheltered real estate companies that own some of the buildings to also profit from and make decisions related to operations.
"Nursing homes are regulated as medical facilities, paid for mostly by Medicare and Medicaid. The assisted-living industry argues that it does not need to be as heavily regulated because it primarily offers housing and meals, along with a menu of personal services such as help showering and toileting and frequent monitoring.
"Residents and their relatives almost always foot the bill, making federal oversight politically challenging, according to experts and academics. Without the threat of withholding payments, "there's no hook" for it, said Mark Miller, a lawyer at Legal Counsel for the Elderly, an affiliate of AARP."
---Understaffed and neglected: How real estate investors reshaped assisted living (Douglas MacMillan and Christopher Rowland, Memory Inc. series, WaPo, 12-17-23) Surveillance video captured a 97-year-old woman’s death outside the locked doors of a high-end Colorado home, a symptom of deeper problems in the $34 billion industry. A mini-history of how the assisted-living industry developed.
---Questions to ask before choosing an assisted living facility (Yeganeh Torbati and Julie Zauzmer Weil, WaPo, 12-17-23)
---How your state regulates assisted-living facilities (Julie Zauzmer Weil and Steven Rich, WaPo) With no federal oversight, the industry is governed by a patchwork of state laws, few of which meet expert recommendations
---Calculator: How much does elder care cost where you live? (Bonnie Berkowitz, Lauren Tierney and Chris Alcantara, WaPo, 12-5-23) More care means higher costs.
• The move to assisted living: Navigating the fine line between money and emotions (Liyna Anwar, Marketplace, 7-13-12)
• At 80, She Is the Defiant Editor of ‘The Buzz’ (John Leland, NY Times, 1-14-2021) Many retirement communities have declined to name names during the pandemic. Residents of a retirement community in New York had no idea which neighbors or employees were sick with the virus, which had died, which had moved out or been exposed during a visit to the doctor. Management refused to provide names, citing privacy laws. So Diana Wiener started a newsletter to do just that.
• Assisted Living Costs (by State) (AssistedLivingFacilities.org) See also Ways to Pay for Assisted Living and pieces on related topics.
• Does Medicare pay for assisted living? Understand what’s covered—and your other options (Liz Seegert, Fortune, 7-17-23) Medicare covers the medical services that people in assisted living need, just as they would if you were still at home, but does not pay for housing, room, food or other fees. It also won’t pay for aides or personal care services, with limited exceptions. “If they have low income and assets they might qualify for Medicaid or a state-funded program that might cover this. But for everyone else, they must pay for this help entirely themselves or rely on friends and family for help.”
• What to know before choosing an assisted living community option for aging loved ones (Kristi King, WTOP News,12-22-22) The professionally managed facilities are the very large national providers, such as Life Care Services, Brookdale, Sunrise Senior Living. Andrew Carle, a faculty member at the Program in Senior Living Administration at Georgetown University, recommends beginning your search with large national providers that, at least in theory, have the resources to perform well.
• How Not to Grow Old in America (Geeta Anand, Opinion, NY Times, 8-29-19) The assisted living industry is booming, by tapping into the fantasy that we can all be self-sufficient until we die--that all we need is a tiny bit of help. "The irony of assisted living is, it’s great if you don’t need too much assistance....But if you have trouble walking or using the bathroom, or have dementia and sometimes wander off, assisting living facilities aren’t the answer, no matter how desperately we wish they were....Most residents of assisted living need substantially more care than they are getting."
• Life and Death in Assisted Living (A.C. Thompson, ProPublica, 2013) An important investigative journalism series in 2013) More and more elderly Americans are choosing to spend their later years in assisted living facilities. But is this loosely regulated, multi-billion dollar industry putting seniors at risk? "Investigators for the last year have been examining the operations of Emeritus Senior Living, the nation’s largest assisted living company." "A ProPublica review of records from the California Department of Social Services shows the state collected less than half of the more than $2 million in fines it issued against assisted living facilities from 2007 to 2012." And so on!
• New state-mandated counseling for seniors irks assisted-living industry (Tom Scheck, Minnesota Public Radio news, 9-19-11) One of the ways Republicans have put the breaks on spending is to require seniors to receive counseling before they enter assisted living facilities and other senior housing. Minnesota’s new law requires that applicants to assisted living be offered “transitional counseling” on cheaper home-care alternatives. The long-term care industry calls that government overreach. Long-term care consultations are already required for people entering a nursing home, said Coleman
• What You Need to Know About Assisted Living Facilities (Howard Gleckman, Caring for Your Parents blog, 5-17-13)
• Assisted Living Kicks Out The Frail ’Cause ‘We Can’t Take Care Of You Any Longer’ ( Judith Graham, KHN, 9-5-18) Is there anything families can do to fight these evictions?
• Assisted Living is a “Ticking Time Bomb” (Frontline, PBS, 7-30-13--edited transcript.) Frontline interviews Catherine Hawes, director of the Program on Aging and Long-Term Care Policy at Texas A&M University. Weak regulation and inconsistent training standards could soon mean a surge in preventable deaths at the nation’s assisted living facilities, she says. Unlike nursing homes, where you have information systems and consumer rating systems that tell you something about the facilities in terms of quality indicators, in terms of staffing, in terms of deficiencies, such information does not exist for assisted living facilities. It's not clear from state to state, or from facility to facility, what assisted living is. Assisted living does not provide the same level of care as nursing homes, yet there is a lot of early memory loss, short-term memory loss, impaired decision-making. "...administrators who worked for some of the big chains, and they told me they were expected to have between a 35 and 40 percent return on revenues. I mean that’s huge. I don’t know any industry that produces a 40 percent return on revenues. Not on investment, on revenues." So they have to take all comers and the more ill patients are the more the facility can charge. You've got a population of people who need medication and bathing and dressing and walking and using the toilet, etc., and the facilities are understaffed, with personnel who are not adequately trained to handle the level of impairment and serious illness they are marketing to attract, to get 90% occupancy rates. "“If you want to be a manicurist in Texas, you have to have 300 hours of training … and yet in 40 hours you can become [an] assisted living administrator. I ask you, does that make sense?” "“That’s why I talk about it as a ticking time bomb, because we’re going to see more deaths, more injuries." Read this transcript before signing up for assisted living! Or watch the video: Life and Death in Assisted Living.
• Just Middlin' (Alexandra Godfrey, Pulse, 5-26-17) Sometimes a patient overwhelmed by life has physical symptoms medicine alone won't address. That's when a good system can change a life. Great storytelling.
• Assisted Living: Costs And Contracts (a checklist of financial questions to ask when you visit an assisted living facility, developed by The Consumer Consortium on Assisted Living (CCAL), a national nonprofit organization that represents consumers's needs in assisted living facilities).
• Seven Questions To Ask When Searching for Assisted Living (Pro Publica, 7-31-13) Pro Publica did an investigative report on the assisted living chain Emeritus, together with PBS's Frontline. Check out additional Pro Publica reports from the series.
• Life and Death in Assisted Living (PBS Frontline/Pro Publica TV documentary on the Emeritus national chain of assisted living facilities). You can watch online. Main points: In the 1990s, with the baby boomer population aging, there was a boom in commercial development of assisted living (AL) facilities, which do not provide medical care and are therefore under-regulated and tend to be understaffed, with staff undertrained and underpaid. Much of AL care is for seniors with dementia (which the facilities market for), for which problem staff do not get adequate training and for whom facilities can charge more money. Most of those patients should be in nursing homes, says one director interviewed; staff members paid $10 an hour are not trained to manage medication for patients who need various sets of pills several times a day, much less handle the other problems of dementia care. So do your homework before you pick a facility. Read Emeritus's approach to thwarting federal oversight as a response to the documentary.
• Assisted Living: Personal Care (a checklist of personal and health care questions to ask, also developed by CCAL)
• Assisted Living: Quality of Life ( checklist of questions dealing with socializing, meals, safety, and other issues to consider when visiting and/or considering an assisted living facility, also developed by CCAL)
• Assisted Living (Medline Plus's excellent and wide-ranging links to information, resources)
• The Day I Moved to Assisted Living (Kent Mulkey, Senior Housing Forum, 6-19-26) Food for thought.
• Advice About Assisted Living for Aging Relatives, Part 1 (Debra Drelich, Ask an Expert, NY Times, 10-16-13) . Followed by Advice About Assisted Living for Aging Relatives, Part 2 (Debra Drelich, Ask an Expert, NY Times, 10-23-13)
• Small Is Beautiful . . . Board and Care Seeks Recognition; Representation (Pam McDonald, Senior Housing Forum, 3-27-16) Board and care facilities are small, typically six-bed personal care homes. While many people think “board and care” and “assisted living” are two separate levels of care, they are actually more brother and sister than unrelated families. As in many other states, California’s assisted living (AL) communities and board and care (BC) homes are licensed and governed by the same state laws and regulations. They both serve seniors age 60+ and are non-medical facilities so they are not required to have nurses, certified nursing assistants or doctors on staff.
• Taking Questions About When It’s Time for Assisted Living (Nicole Higgins DeSmet, NY Times, 10-9-13--answers to be posted 10-16-13) Ask an Expert features Debra Drelich, a specialist in geriatric care who will answer questions about assisted living and other special living arrangements for aging relatives.
• All the Right Questions. What to know and what to ask when choosing an assisted-living facility. Julyssa Lopez (Washingtonian, 11-09) explains key questions to get info on: What care is provided? Is the facility well run? Can it handle emergencies? What if my health gets worse? What do I look for in a contract? Can I change the contract? Are there hidden fees? Can I get a refund? Can they kick me out?
• 10 Things to Know About Assisted Living (Jane Gross, New Old Age, NY Times, 10-20-08).
• Ten Things You Need to Know About Assisted Living (Martin Bayne, Changing Aging, 2-25-13)
• Life and Death in Assisted Living (series by Frontline and Pro Publica, as part of an ongoing investigation, A.C. Thompson and Jonathan Jones and others reporting)
---Part 1: The Emerald City (7-29-13).
---Is Assisted Living Putting Profits Above Care? (Blair Hickman, ProPublica, 7-31-13) Is the loosely regulated, multi-billion dollar assisted living industry putting seniors at risk?
---World of Hurt: Those Lost and Those Left Behind (8-1-13) When things go wrong in assisted living, people can pay with their dignity, and sometimes with their lives. A review of state regulatory records and more than 100 lawsuits turned up repeated examples of grave mistakes or misconduct at facilities operated by Emeritus Senior Living, the country’s largest assisted living company. These are the stories of five families still trying to cope with their pain.
---For Assisted Living Industry, a Media Strategy to Thwart Federal Oversight (Pro Publica, 7-30-13) In a talking points memo, Emeritus, the country’s largest assisted living company, seeks to highlight the company’s compassion and deride any need for greater regulation out of Washington.
---The Deaths and Disappearance that Haunt Assisted Living (8-1-13)
---: Elderly at Risk and Haphazardly Protected (A.C. Thompson and Jonathan Jones, Frontline and ProPublica, 10-29-13). This examination of the multibillion-dollar assisted living industry reveals a mishmash of minimal state regulation and no involvement by federal officials. Even though increasing numbers of assisted living residents are seriously ill and require complex care, regulations for assisted living lag far behind the reality in many states -- and assisted living operators face few consequences for even the most serious lapses. Pieces: Elderly at risk and haphazardly protected. In California, a major system's considerable failure. The industry is smart. In Washington, a lack of will.
• Assisted Living: Facilities, Financing, and Oversight (National Health Policy Forum, "The Basics," 1-29-13)
• Nude Modeling in Assisted Living (Steve Moran, Senior Housing Forum,2-23-15) A facility that does things beautifully.
• LongTermCare.gov (U.S. Department of Health and Human Services), a helpful site that provides such information as the estimated cost of care in your state.
• How to Live in Assisted Living (Judith Graham, The New Old Age, NY Times, 3-20-13). Graham interviews Martin Bayne about the emotional experiences of older adults in assisted living and what changes he would like to see made in this type of long-term care. Bayne, who lives in assisted living, writes an excellent blog: The Voice of Aging Boomers . Read some of his blog posts for frank discussions of what goes on and what should and shouldn't go on, among the elderly who need help.
• Assisted Living vs. Memory Care (Senior Living Blog, A Place for Mom, 8-6-15)
• Assisted living facilities may be wise to appeal more to men (Pam Gerhardt, Washington Post, 8-1-11). To begin with, change the name.
• Nude Modeling In Assisted Living (Senior Housing Forum, 2-23-15) A visit to Bayside Park assisted living facility near Berkeley.
• Tenure (Martin Bayne, 2-9-13). On his 10th anniversary in assisted living, Bayne writes "Purpose is the magic elixir that trumps pain, transcends any notion of limitation and opens our minds and hearts to possibility. It is also the single most accurate predictor of joy and fulfillment in an aging population." (Among other things.)
• A Room With A Grim View: The ‘Ambient Despair’ That Marks Life In Assisted Living (Martin Bayne, Health Affairs, 7-26-12). After entering an assisted living facility at age fifty-three because of young-onset Parkinson’s, an observer-advocate contemplates the dire need for long-term care reform. In another, blog post, he writes that sub-standard wages are the biggest obstacle to better assisted living facilities. "The women of color that are the backbone of this country’s network of institutional aging facilities – many of them single parents – are denied a living wage. This creates a 'revolving door' phenomenon that cripples moral and destroys any sense of continuity for the residents."
• How is society to look after the ever-growing number of people with dementia? (Martin Bayne, The Voice of Aging Boomers, 8-18-12). A curiously uplifting care home near Amsterdam may have the answers
• Assisted Living Facilities and Standards of Care (listen to Diane Rehm discussion with guests Joanne Lynn, Larry Minnix, Becky Kurtz, or A.C. Thompson) or read the transcript.
• The National Long-Term Care Ombudsman Resource Center
• A Dark View of Assisted Living (Paula Span, New Old Age, NY Times, 7-30-13)
• Life and Death in Assisted Living (Frontline, 7-30-13). Watch video online. Is this loosely regulated, multi-billion-dollar industry putting seniors at risk? As more and more elderly Americans choose to spend their later years in assisted living facilities, FRONTLINE and ProPublica examine whether this loosely regulated, multi-billion dollar industry is putting seniors at risk? Watch the full film here; you can also download the full series as an e-book.
• “The Emerald City” Life and Death in Assisted Living, Part 1 (very readable text, A.C. Thompson and Jonathan Jones, ProPublica). On the same website page follow Part 2, “They’re Not Treating Mom Well,” Part 3, “A Sinking Ship,” Part 4, “Close the Back Door.” The reporters invite staff to report (Have You Worked In an Assisted Living Facility?) and the responses are posted online.
• Seven Questions To Ask When Searching for Assisted Living (Jason M. Breslow, Frontline, 7-30-13)
• The Deaths and Disappearance that Haunt Assisted Living (A.C. Thompson and Jonathan Jones, Frontline, 7-30-13)
• Lessons We Can Learn From Frontline's Expose of Assisted Living (Howard Gleckman, Forbes, 7-31-13)
• Managing the Assisted Living vs. Hospice Dilemma (Judith Graham, New Old Age, NY Times, 11-19-12)
• Assisted Living Facilities and Standards of Care (listen to Diane Rehm discussion with guests Joanne Lynn, Larry Minnix, Becky Kurtz, or A.C. Thompson) or read the transcript.
• Eldercare Locator
• The National Long-Term Care Ombudsman Resource Center
Home sharing
• Silvernest: Home Sweet Shared Home The Modern Way to Roommate, built from the ground up to make homesharing a breeze-- a roommate finder and all-in-one homesharing platform, matching homeowners and housemates based on compatibility.
• SilverNest Brings Senior Homesharing to the 55+ Generation (Joy Intriago, SeniorsMatter.com) Homesharing--getting a roommate--is nothing new but senior homesharing is. SilverNest takes away a lot of the uncertainties of finding a housemate by using an algorithm/formula that takes into account a number of factors, including age, living habits, and gender, among others.For retirees who do not want to sell their family home and downsize, roommates are a viable choice (a good income stream) to offset expenses.
• Sharing Housing, Annamarie Pluhar founded Sharing Housing, Inc. to teach people how to create affordable and healthy shared housing. See, for example, Where Do I Find a Good Home-Mate?
• Getting a Roommate in Your Golden Years (Kaya Laterman, NY Times, 1-12-18) "So she did what many others do to keep costs down in an expensive city: She found a roommate. Instead of placing an ad online, however, Ms. Felstein turned to the New York Foundation for Senior Citizens, a Manhattan-based nonprofit. The group has been operating a home-sharing service since 1981, matching people who have space in their homes with those in need of affordable housing. It is one of a number of similar programs that have emerged across the country as the population of older Americans grows, as a way to help people stay in their homes. The concept of pairing older people with younger ones, particularly those who are not family members, is not a new one: It was popularized by Maggie Kuhn, an elder-rights activist who opened up her Philadelphia home to others for more than 20 years before she died in 1995. Today’s home sharing, however, is as likely to be between those of the same age as it is to be intergenerational. The crucial thing is that it involves two or more people sharing an apartment or a house to their mutual benefit. And finances often play a big role.... " The New York Foundation for Senior Citizens connected her with a licensed social worker who asked a host of questions, including details about her sleeping habits, personality, interests and daily schedule. She also had to provide three personal recommendations and her rental agreement, to prove she was on the lease."
• How Do I Choose A Roommate? (Golden Girls Network) Excerpt from How to Start a Golden Girls Home by Bonnie Moore. Have an extra room? Would you like to find another woman or man to live with? Want to try it?
• The New York Foundation for Senior Citizens. The group featured in Laterman's piece on finding a roommate in your golden years links to more stories on the subject. Stories on home-sharing include ‘Home Sharing’ pairs unlikely strangers as NYC rent spikes (video. Pix 11 Morning News, 11-17-16). A free program matches older and younger people to share apartments, as rents spike and elder population grows. And Boomer roomies: Older Americans are seeking roommates (CBS This Morning, 10-17-15) Sharing space can address the financial problems but also alleviate loneliness. "It adds a richness I can't even describe." And Seniors share homes for cost saving, companionship (AP, Boston Globe, 7-25-14) "Agencies that put such seniors together say the need appears to be growing as baby boomers age. A typical situation involves an elderly woman, widowed or divorced, who has a house or an apartment with extra room and needs help with the upkeep." Agencies handle background checks and other screening and consider various lifestyle criteria — smoking, pets, disposable income — in making matches. New roommates sign an agreement covering chores, overnight visitors, telephone use, and so on.
Cohousing
• Cohousing. Cohousing communities are old-fashioned neighborhoods that bring together the value of private homes with the benefits of more sustainable living, including common facilities and good connections with neighbors.
• The Cohousing Directory (Cohousing.org)
• The Senior Cohousing Handbook: A Community Approach to Independent Living by Charles Durrett (with a focus on Denmark's pioneering efforts in cohousing in the 1980s and '90s, but concepts interesting for elsewhere al)so
• There’s Community and Consensus. But It’s No Commune. (Tom Verde, Retiring, NY Times, 1-20-18) A small movement with an ungainly name, cohousing, is appealing to more people of retirement age — and younger — who no longer want to be isolated.
• Will Cohousing Catch on With Boomers? (Scott Lyle, 4-13-16) Basically, these are developments where residents share group kitchens, car rides, and other amenities. More than 150 such communities exist and 14 are being planned across the country exclusively for seniors, according to the Cohousing Association of the United States. These places are often committed to sustainable living as well. EcoVillage is one such example ...Quimper Village is another.
• Not Home Alone (Sally Abrahms, Time) Seniors are signing up for semi-communal enclaves, with separate homes but a supportive community. "Cohousing, which debuted in Denmark in the 1970s, is a semi-communal concept in which separate living units–usually attached condo-style–are clustered around a “common house,” which, at the very least, has a kitchen, a dining room and a third area for gatherings and activities."
• Elder Cohousing: A New Option for Retirement or Sooner! (Sally Abrahms, AARP) Don’t be fooled by the word “senior.” Many opting for this arrangement are in their 50s, 60s and early 70s and often still work .
• Fact Sheet: Cohousing for Older Adults (AARP)
• Elder Co-Housing Is More Than Living With Friends (The Senior List, 1-4-18)
• Articles about cohousing (The Cohousing Association of the United States)
• For active seniors, co-housing offers a cozier alternative to downsizing (Sharon Jayson, Kaiser Health News and USA Today, 11-5-17)
• Elder Cohousing: The Epitome of Aging in Community (Anne P. Glass, American Society on Aging) “We’re different from other communities because we are looking at those realities and … trying to help each other through them … learning to age well together.”
• Creating Cohousing (Laura Fitch, Cohousing Association) Links to a number of articles on various aspects of starting up your own cohousing.
Tiny houses and the small-home movement
(minimalism and mini-houses)"While there’s no official definition for a tiny house, they’re generally said to be around 500 or fewer square feet, making my place somewhat medium-size as far as tiny houses go. (The average size of a new apartment in the U.S., as of 2018, is 941 square feet.)" ~Adele Peters, Fast Company
• How the Tiny-Home Movement Is Providing More Than Just a Roof to Homeless People (Giles Bruce, KHN, 2-7-22) With housing costs rising, tiny homes are spreading as a solution to homelessness in California, Indiana, Missouri, Oregon, and beyond. Cities and nonprofits across the country are building communities of tiny homes to safely house people amid covid and cold winters. They range from cabins with a cot and a heater to miniature houses with kitchens and bathrooms.
• Backyard "granny pods" could be the alternative to nursing homes (David Wolfe, MEDCottages)
• What is an ADU (Accessory Dwelling Unit) (Makara Builders) Nestled in your backyard an ADU can be used for guests, to house adult children or aging parents, to bring in rental income, or to use as your office.
• What's Happened to the Tiny House Movement? (Kerri Fivecoat-Campbell, Next Avenue, 4-4-22) "The movement hasn't stopped growing, it's just not in the public eye as much anymore."
• What Is the Tiny House Movement? (The Tiny Life) See also Top 5 Biggest Barriers to the Tiny House Movement Land, loans, laws, social pressures, and fear. And solutions to those problems: Part 1 (the first three) and Part 2 (social pressures and fear). Many practical articles on this site.
• A particularly striking tiny house on its own Facebook page. It doesn't look "shabby" to me. Does it to you?
• Man Discovers a Family of Mice Living in His Garden, Builds Them a Miniature Village (Rokas L, Bored Panda) Photographer Simon Dell stumbled on a family of mice running around his garden. Instead of reaching for the traps, he built the mice a miniature village and they repaid him by posing in front of his camera. Delightful photos and story. H/T Sue Russell, who also alerted me to a Facebook page for George the Mouse in a log pile house
• These 10 Tiny Homes Are Minimalist Goals (Camryn Rabideau, Food52, 1-9-19) Yours in just a few swift clicks. A couple of these are stunning, but are they liveable? What do you think about #4: Capri from Green Magic Homes (with grass-like composite for a roof)?
• Why I hate living in my tiny house (Adele Peters, Fast Company, 10-2-19) In built-up cities with little extra land and residents who fight development, adding tiny cottages (accessory dwelling units or ADUs) in backyards is one way to help address the housing shortage. The small size saves energy and curb shopping habits, but Peters questions "how well tiny homes make sense as a solution for long-term housing—and in some cases, as in the even tinier houses sometimes used as housing for people experiencing homelessness, I wonder if they can sometimes distract from other, more systemic solutions that are necessary....Small backyard houses get a lot of attention as a solution to the housing crisis, but it’s a different idea in theory than it is when you try to put it into practice."
• This Tiny Life: Ditch the square feet, gain the world. (Ana McKenzie, Creative Loafing, 3-26-14) Ryan Mitchell has spent the last two years building his dream home. It's no bigger than a backyard tool shed, and he'll go to the bathroom in a bucket. He then founded The Tiny Life and wrote Tiny House Living: Ideas for Building & Living Well in Less than 400 Square Feet
• Best Tiny Houses (iReviews) Reviews of the Minim, Aurora, Alpha, Ridgewood, and Futterall tiny houses.
• Tiny House Community Many more resources here.
• Tiny House Designing, Building, & Living by Andrew and Gabriella Morrison (an Idiot's Guide)
• Tiny House Basics: Living the Good Life in Small Spaces by Joshua and Shelley Engberg (on Kindle)
• Tiny House Nation (watch various episodes/tours of tiny houses)
• 10 TINY HOUSE TIPS and Tricks from Wife & Husband Designer & Builder (Pam and Bruce Westra). Showcases different rooflines and styles and offers important lessons for those who plan to build their own tiny house. #1. Go through and videotape whole house showing where all your plumbing parts are, before you add the walls. #2. Install your shower stall before all the walls are closed in. And so on (very practical, plus two bonus tips).
• Lifelong Best Friends Build Their Own “Bestie Row” Of Tiny Houses So They Can All Live Together (BlamNews)
• Young Woman Builds Charming Bayside Tiny House (YouTube) Brittany Yunker built this tiny house herself when she was 26 years old. She lived in it for two years and now has it available as a vacation rental in Olympia, Washington. More of a tour than most, which is interesting--e.g., why she would build a dormer roof if she did it again.
• 11 Homes Made Out of the Darndest Things, from Treehouses to Missile Silos (Brian Clark Howard, The Daily Green, 5-13-19) I love the tree house, and tracking it down leads one to this remarkable structure: The sustainable Hobbit Hole Home (Web Urbanist)'
• Traditional Icelandic turf houses (YouTube tour, the original green buildings because they were built using local and natural materials, good for communal living in Iceland)
• Her Eco-Friendly Tiny House Is Eclectic and Beautiful (YouTube) Anita's eco-friendly tiny home, "The Lilypad," features two lofts and FIVE rooms in less than 250 square feet.
• Her Whimsical Tiny House Looks Like a Fairytale (Bernadette Garner's whimsical, Gothic "The Pinafore"). Check out the windows by Bill Hillman of Mansion Glass, Olympia, WA)
• Tiny House School Bus Conversion (Bertha TV, 7-24-18) A full tour of the super-efficient bus and a look at the conversion process. Filmed after living full-time for three and a half years. And School Bus Life When the Weather Is Fine (Mom, Dad, and three little boys)
• What Is the Tiny House Movement? (with infographics)
• Living in a Tiny House Stinks (Sometimes) (Jenna Spesard) The hardships of living tiny and why it sometimes stinks--literally and figuratively. Fascinating and essential reading if you are considering Tiny House Life. See also her practical pieces:
---Tiny House Parking (tiny house GIANT JOURNEY, 5-15-17) Legalities. Rules. Options. Where? How? Resources
---Tiny House Insurance: My Personal Experience and Policy (10-19-16)
---The Perfect Tiny House Composting Toilet (9-18-15)
• The Tiny Life store
• The Crib (an enviroresponsible environment -- weekend cabin, backyard office, study, or guest house)
• Kristie Wolfe builds underground home & sets rural WA hamlet (YouTube, “Hobbit”-inspired underground house, fully "permitted" locally.
• WA maker turns skoolie, short-bus & shipping container into family home (YouTube, Jeremy and Mira Thompson quit their jobs and sold their suburban home to hit the road in a short-bus they’d converted into a mobile home)
• Straw bale cottage rises in South Berkeley (Judith Scherr, Contra Costa Times, 11-19-14). Building the 438-square straw house became a community project. And no, it's not a fire trap.
• Another tiny house, for minimalist living (video, Tiny House Nation)
• Rotating tiny home (on Facebook). High tech camper unfolds to reveal a 2-bedroom home. When traveling the sCarabane is a boxy mobile garage, but once you're at camp, the trailer.
• How the Trailer Park Could Save Us All (Lisa Margonelli, Pacific Standard) A healthy, inexpensive, environmentally friendly solution for housing millions of retiring baby boomers is staring us in the face. We just know it by a dirty name.
• Could You Survive in 150 Square Feet? The Lowdown on Tiny Homes (Teresa Mears, US News, 6-18-15)
• Living Large in Our Little House: Thriving in 480 Square Feet with Six Dogs, a Husband, and One Remote--Plus More Stories of How You Can Too by Kerri Fivecoat-Campbell
• An RV Like You've Never Seen Before (Tumbleweed Tiny House Company)
• Small House Movement (links to several Huffington Post articles on the subject, including 17 Tiny Dream Homes Under 200 Square Feet (great images!)
• Storage-Smart Renovation in New York City (Sarah Rich, Dwell, 5-13-09)
• From the home front: Critiquing the tiny house movement (Pat Jeffreies, The Oregonian, 7-31-13).
• more Oregonian stories on the tiny house movement.
• Open Concept Modern Tiny House with Elevator Bed (this video of Ana White's tiny house in Alaska is full of space-saving ideas)
• Living Large in Our Little House (Kerri Fivecoat-Campbell's blog, to be a book in June 2016)
• 20 Coolest Houses in the World (Be Amazed). These aren't all tiny, but they are sure to surprise.
• Why Hasn't the Tiny House Movement Become a Big Thing? A Look at 5 Big Barriers (Lloyd Alter, Treehugger, 7-25-12)
• More tiny house books (The Tiny Project's recommendations)
Legal aspects of community volunteer activities
• Understanding Nonprofit Status and Tax Exemption (Section 4, Community Tool Box, Center for Community Health and Development at the University of Kansas)
"Granting nonprofit status is done by the state, while applying for tax-exempt designation (such as 501(c)(3), the charitable tax-exemption) is granted by the federal government in the form of the IRS."
• Writing Bylaws (Section 7, Chapter 9: Developing an Organizational Structure for the Initiative, Community Toolbox, Center for Community Health and Development at the University of Kansas)
• Risky Business: There’s liability for the acts of your volunteers (Siobhan Kelley, TheNonProfitTimes, 6-4-14)
• Volunteer Protection Acts and Good Samaritan Laws fact sheet (Emergency Volunteer Toolkit, Association of State and Territorial Health Officials, ASTHO Legal Preparedness Series) "Of course, the most effective way to manage the risk of being sued is to reduce the risk of harm in the first place. Consider that your volunteers might expose the nonprofit to the same risks as employees, and treat them accordingly. Best practices include a comprehensive risk management program, volunteer training, informed safety procedures and a robust procedure for reporting concerns. Some insurance companies offer special discounts or programs available to help nonprofits reduce risk. While there is no silver bullet that eliminates all volunteer risk, you can protect your nonprofit and its board members by obtaining the appropriate insurance coverage and following best risk management practices."
• Volunteer Protection Act of 1997 (PDF, Government Printing Office)
• Volunteer Protection Acts and Good Samaritan Laws fact sheet (PDF, Emergency Volunteer Toolkit, Association of State and Territorial Health Officials, ASTHO Legal Preparedness Series)
FACILITY-BASED SOLUTIONS
The Eden Alternative, The Green House Project, and alternatives to traditional nursing home models
The Eden Alternative -- a nonprofit that believes aging should be a continued stage of development and growth, rather than a period of decline. Its aim: culture change in long-term care, to eliminate the three plagues of loneliness, helplessness, and boredom.
• The Green House Project. We’re lucky if we get to be old, physician and professor believes (Tara Bahrampour, Wash Post, 1-23-16) Bill Thomas, who argues that "there is a “third” phase of life beyond adulthood that can be as rich as either of the phases that came before..." He moved beyond nursing homes to set up small, intimate residences called Green Houses. With private bedrooms and bathrooms, they offered dignity and privacy. Their size had an unexpected effect. “Within six weeks, they had to send a truck around to pick up all the wheelchairs,” Thomas said of one house. “You know why most people [in nursing homes] use wheelchairs? Because the buildings are so damn big. . . . The buildings disable elders.”
• The Economics of Biophilia: Why Designing with Nature in Mind Makes Financial Sense (Terrapin Bright Green, 6-12) “Biophilia is the innately emotional affiliation of human beings to other living organisms. Life around us exceeds in complexity and beauty anything else humanity is ever likely to encounter,” wrote American biologist Edward O. Wilson.
• Being in contact with nature activates memories and offers elderly people in nursing homes beneficial experiences (Wykepleien, 6-18) H/T Sarah White, whose article Nature Really Is Medicine, This Caregiver Learned appears in Generations (American Society on Aging, 11-30-22)
• LTSS Choices: Small-House Nursing Homes (Susan C. Reinhard and Edem Hado, AARP, 1-6-21)
• A Series on Advancing Transformation in Long-Term Services and Supports (LTSS) (AARP Public Policy Institute) Articles on various aspects of LTSS Choices—a multifaceted project with an overarching mission to catalyze the transformation and modernization of the nation’s long-term care system into one that meets the dynamic needs and preferences of consumers and their families. See, for example, Small-House Nursing Homes (PDF, Susan C. Reinhard and Edem Hado, AARP report, 2021)
• A New Model for Nursing Home Care (Susan B. Garland, Kiplinger's Retirement Report, April 2016) 'Green Houses' offer homier atmospheres and more individual attention from caregivers.
• The Eden Alternative . (Dale Bell, & thou shalt honor). Dr. William Thomas, who proposed the Eden Alternative, believes that nursing homes are primarily homes, not hospitals, and suggests nursing homes commit to a human habitat model--in which the residents' lives in nursing homes revolve around a decentralized team method of care delivery, resident animals, daily children's activities, and many plants. The Harvard graduate and father of five has so far "Edenized" about 300 nursing homes in the United States and a handful in Australia and Europe.
• Find a member of the Eden Alternative registry
• The Eden Alternative Explained (Virgil Thomas, ChangingAging.org, 3-17-14) Read more on the Eden Alternative blog.
• Mission, Vision, Values, and Ten Principles of the Eden Alternative. To eliminate loneliness, helplessness, and boredom.
• Ten Principles. An Elder-centered community commits to creating a human habitat where life revolves around close and continuing contact with plants, animals, and children. It is these relationships that provide the young and old alike with a pathway to a life worth living.
• Eden Alternative video (Jason Goodman). Add companionship, pets, and children, to turn a nursing home into a living home.
• Move Over Nursing Homes — There's Something Different: Green Houses (Ina Jaffe, All Things Considered, NPR, 7-24-13). Typically each elder will have a private room and/or a private bathroom.
• Swedish Couple Builds Greenhouse Around Home to Stay Warm and Grow Food All Year Long (ReturnToNow.net, 3-4-19) Greenhouse keeps home in the 60’s, even when it’s freezing outside; allows family to grow Mediterranean fruit in Sweden
• Personal Pets in Long-Term Care
• Archives of stories about Eden Alternative
• How is the Green House Project Different From the Eden Alternative? (Dana Larsen, A Place for Mom 10-8-12)
• Small Residences for the Elderly Provide More Personal, Homelike Care (Constance Gustke, NY Times, 11-20-15) For greater warmth and nurturing, seniors are turning to small residences like Green House, which is part of a complex of senior housing and care options, and privately owned care homes that are often unmarked in residential neighborhoods. They are usually newer, sometimes cheaper, and generally offer more customized care than most nursing homes. Jewish Home Lifecare wants to open a building consisting of 22 stacked homes. “This is a concept where the commune meets the kibbutz.” "Another alternative to big-box nursing homes is residential care, also known as adult foster care, which typically costs about half of what a nursing home charges, according to A Place for Mom, a referral for senior care. Residential care homes are often simply single-family homes adapted for elder care."
• The Green House Project
• The Green House Project model (caring homes for meaningful lives, transforming the culture of long-term care)
• My Mother, the Lion (Ruth Little, on her mother's life and her final days in Elders' Eden)
• Action Pact "Changing communities, changing lives." "Culture change is a process and movement of transforming traditional, institutional long-term care facilities, into true homes. It involves a change of environment, systems and attitude. It’s not just a change you can see, it’s a change you feel; a change elders feel as they direct their own lives and staff feel as they are empowered to help them do so."
• Pioneer Network Changing the culture of aging, with a focus on person-directed care. See, for example, Low Cost Practical Strategies to Transform Nursing Home Environments: Towards Better Quality of Life (PDF, Lois Cutler, Rosalie A. Kane).
Continuing care retirement communities (CCRCs)
• Continuing Care Questionnaire (a checklist of questions to ask when visiting and considering a continuing care retirement community (National Caregivers Library)
• Today's Continuing Care Retirement Community (CCRC) (PDF-- this white paper from SeniorsHousing.org provides background you should have when you start looking at facilities)
• Finding Communities That Connect and Nurture the Like-Minded (Abby Ellin, Your Money, NY Times, 12-26-14)
• How to select a continuing care retirement community (PDF, Senior Navigator, CARF-CCAC, the only accrediting body for CCRCs). See more CARF resources on the subject, and The Pros and Cons of CCRCs (USA Today), including the fact that entry fees are very high and if the CCRC is not financially sound you could lose your money.
• A Retirement Community Turned Away These Married Women (Paula Span, NY Times, 8-17-18) According to the facility’s “cohabitation policy,” marriage is between one man and one woman, “as it is understood in the Bible.”
• A Geriatrician's Search for Senior Living -- One Caregiver's Story: Doctor, Daughter, Caregiver (Sherri Snelling,Caring.com). Sally Brooks' solution was a continuing care retirement community (CCRC), where her mother could live in assisted living while her dad was cared for in the dementia-care facility on the same campus. See Five Things to Consider When Selecting the Right Nursing Center for Elderly Parents. Note that she checked the facility's rating (on a five-star scale) by the Centers for Medicare and Medicaid Services.
"Often what we define as health problems are really support problems." ~ Judith Snow, quoted in Consequential Strangers: The Power of People Who Don't Seem to Matter. . . But Really Do by Melinda Blau and Karen L. Fingerman
Memory Care
• Unprotected: Abuse, neglect in senior care homes raise questions about conditions, oversight during pandemic (Carrie Teegardin, Atlanta Journal-Constitution, 12-26-2020) Disturbing cases of abuse and neglect inside Georgia’s nursing homes, assisted living communities and personal care homes are coming to light as brutal side effects of the coronavirus crisis.... In one case after another, care falls short when staff members are overburdened or underqualified. That’s increasingly been the situation during the pandemic as facilities struggle to find enough workers. Yet breakdowns in care, and even criminal acts, can go unreported, as most homes operated for weeks with no outsiders coming in to check on residents’ welfare. In some of the worst cases, vulnerable residents were grievously harmed or died."
• Assisted Living vs. Memory Care (Senior Living Blog, A Place for Mom, 8-6-15). Assisted living is defined as “a long-term care option that combines housing, support services and health care, as needed.” "Memory care is a distinct form of long-term skilled nursing that specifically caters to patients with Alzheimer’s disease, dementia and other types of memory problems." Assisted care living communities may or may not have special (memory) care units (SCUs).
• What is Alzheimer's memory care? (A Place for Mom's helpful fact sheet)
• New technology featured in Council Bluffs memory care facility (Camila Orti, KETV, 3-23-16) ) Automatic unlocking doors and key-controlled kitchen utilities are just a few of the high-tech safety details found in the Hansen House in Council Bluffs, Iowa.
• Grind Dining: Beyond Finger Food (Angela Downs, Eating Well, CARES blog, 10-23-15) "In nursing homes and senior living facilities all over the country, meals for memory care residents – primarily those with neurological conditions like Alzheimer’s and other related dementia – are often uninspiring and child-like....Chef Stone, inspired by memories from her childhood, decided to try grinding up proteins, carbs, and vegetables to create an elevated version of “finger food.”
• What is Memory Care and How Much Should it Cost? (Assisted Living Today)
• What You Need to Know About Alzheimer's Care Facilities (Gilbert Guide, Caring.com)
• Finding Activities for Parents with Memory Loss (Cynthia Green, The New Old Age, NY Times blog, 4-6-10)
• Sensecam: A Little Black Box to Jog Failing Memory (Yudhijit Bhattacharjee, NYTimes, 3-8-10, on a gadget that may be useful for Alzheimer's patients)
• The Trouble With Alzheimer's Care: One Family's Story (Kerry Hannon, U.S. News, 3-11-09, four pages) After Dad is taken away for a psychiatric evaluation, his family loses control. Then they learn that memory care facilities are reluctant to take patients who exhibit aggressive behavior.
• How the Loss of Memory Works in Alzheimer’s, and How Understanding This Could Help You (Carole B. Larkin, Alzheimer's Reading Room
• 16 Things I Would Want, If I Get Dementia (Rachael Wonderlin, Alzheimer's Reading Room)
• Horses and Dementia . . . Are They Nuts? (Steve Moran, Senior Housing Forum, 10-19-15)
• How to Become a Dementia Detective (Rachael Wonderlin Alzheimer's Reading Room)
Long-term acute care hospitals
At These Hospitals, Recovery Is Rare, but Comfort Is Not (Gina Kolata, Health, NY Times, 6-23-14) The Hospital for Special Care is one of 400 long-term acute care hospitals in the United States. These are no ordinary hospitals: Critically ill patients, sometimes unresponsive or in comas, may live here for months, even years, sustained by respirators and feeding tubes....These facilities often are tucked out of sight, and even many doctors do not know they exist."
• 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. "Some people may change directions and choose hospice care instead," Dr. Makam said. But compared to patients in the general Medicare population, far fewer L.T.C.H. patients enroll in hospice, although many would qualify as terminally ill.
"It's easy for this move to be like a train you get on until it stops," Dr. Lamas said of L.T.C.H. stays. "But the doors can open at any point."
• LongTermCare.gov
• Long-Term Care Hospital Compare (compare facilities near patient)
• What are long-term care hospitals (LTCHs)? (PDF, Centers for Medicare & Medicaid Services)
• FAQs about long-term acute care hospitals (American Speech-Language-Hearing Association)
• House, Senate Leaders Introduce Bill to Change Post-Acute Care System Steve Teske, Bloomberg BNA, 6-27-14)
HELPFUL DEVICES, PRODUCTS, SUPPORTS, APPROACHES
Assistive devices, remodeling,
and other ways to enable independent living for aging and disabled people
1. Devices to make everyday life safer and easier
2. Organizations and sites helpful for improving life for seniors and the disabled
1. Devices and products to make everyday living safer and easier
Those of us who have had encounters with serious illness or injury, or just plain aging, have come to value highly such wonderful devices as the reacher-grabber (this particular one by Ettore), which helps you pick something up off the floor if you can't bend over or squat. It's also good for grabbing things off shelves or high places. My friend Paulann, after back surgery, recommends a five-piece Sammons Preston kit for hip and knee replacement, which includes a 32-inch reacher-grabber, a put-on-your-socks aid, a long plastic shoe horn, and a bendable 18-inch-handled sponge. There is a comparable RMS Premium hip or knee replacement kit. You don't need a hip or knee replacement to find the various devices helpful.
Steps taken to help disabled people become enormously relevant when we are temporarily disabled after an illness or accident (try navigating stairs with a broken limb), or pregnant, say, -- or begin to experience the many disabilities that begin to accrue with age. Life is different when you can’t see or hear as well or get around with the same physical ease you once had. We trip or tip over easily, and bang: we're at the ER. Luckily many aids, devices, and support programs are available. Check them out, if not for you, for friends and relatives (they make a GREAT get-well gift, as I learned with the reacher-grabber). These technologies and products can also enable or facilitate independent living in the frail and elderly. In particular, consider such adaptive equipment as grab bars or stair lifts, or think about lowering counter heights, adding railings, replacing door knobs with lever style handles (easier for arthritic hands to work), modifying kitchens for easier meal preparation, widening doorways so wheelchairs can pass through, installing emergency communication systems, and so on. (See assistive devices, remodeling, etc., below.)
In particular, consider a Medical Alert system (Lifeline and others). Check out What to look for in a medical alert system (Consumer Reports, 2014, but prices updated). A friend lay unable to call for help for 50 hours before a friend, wondering why she didn't show up for a dinner engagement, went by her house and found her lying in great pain with a broken femur (she had fallen while taking off a sock). A medical alert system would have been a good thing to have for a situation like that. Who needs one? Most buyers purchase a system for an aging parent who lives alone so that they can get help quickly if needed. That person might be at a heightened risk for falls because of poor eyesight or memory changes, says Barbara Resnick, Ph.D., professor of nursing at the University of Maryland and past president of the American Geriatrics Society. The systems can also be useful in nonemergency situations where the user doesn’t need an ambulance but does need someone to come to their aid. The call center will alert a preselected relative or friend who can come over and assist." See product reviews for various brands (MySeniorSource)
Devices and products to make everyday living safer and easier
Helpful devices, in alphabetical order
See also Managing your household
• AARP Homefit Guide Smart ways to make a home comfortable, safe and a great fit for older adults — and people of all ages. See also Use This, Not That The right kind of drawer and door handles can provide a better grip. Grab bars and stair rails can make a home safer. Here, a dozen HomeFit Do's and Don'ts.
• Adaptive clothing. “It Was Eye-Opening”: Two Moms Founded an Adaptive Clothing Company After Seeing a Need. (Rebekah Brandes, Nice News, 1-6-24) For three months, after 5-year-old Stella, who has cerebral palsy, underwent double hip surgery and had casts on both legs with a bar set between them, her mother couldn't find special clothing her child could wear, so she and a friend developed befree, an adaptive clothing brand dedicated to improving lives through inclusive fashion (illustrated in the article).
• Adult diapers, incontinence supplies, bedding, safety equipment, mobility devices, etc. (Parentgiving)
• Adult tricycles (article by Emily Stokes, "The Third Way: Tricycles," in T, 11-11-14)
• Adult tricycles (Best Reviews guide). See also These Aren’t Tykes on Little Bikes: A Mature Market Adopts the Tricycle (Rachel Bachman, Wall Street Journal, 10-9-14) You've heard of recumbent bikes? Try a recumbent trike.
• American Red Cross Disaster & Emergency Kit (by First Aid Only, helpful for carrying in car; only things missing are saline solution and a flashlight, so buy those separately, advises one reviewer)]
• American Red Cross Emergency Smartpack for One Person (First Aid Only kit)
• Assistive Technology Makes Cars Accessible for People with Disabilities (Carmen Adams, SellMax)
• Bath Lifts (reviews and ratings, MySeniorSource)
• Best Mattress for Arthritis and Joint Pain (Sleep Foundation) Best overall, best value, most comfortable, best chiropractor-endorsed, best for back pain, best for side sleepers, best for pressure relief, best firmness options.
• The Best Smart Home Devices (PC Magazine, updated regularly). Hubs and controllers, surveillance cameras, video doorbells, smart plugs and smart locks, smart lighting, home security systems.
• Bidet (for turning your toilet into a bottom-washer, too--here, the Luxe Bidet Neo 120 with a self-cleaning nozzle--non-electric, mechanical, attach to toilet). Or the Neo 185 Elite or the Neo 320 (with hot or cold water). Here's a demo.
• BillRay Home Mobility (Friendly Beds--heavy duty assistive devices to the bed-mobility-challenged--watch the video to see how they work)
• Blue bands (one of several Blue Willow Products). See Senior Housing Forumstory about a device for detecting seniors' falls or wandering. These devices detect falls and provide real time notification of the fall and resident location; provide a meaningful useable Geofence; and provide real time location information on residents and staff.
• Can You Afford to Age in Place? (Lynnette Khalfani-Cox, Living on a Budget, AARP, 2-14-17) The rough cost of several key universal design features: Nonslip flooring, slip-resistant shower and tub surfaces (and non-slip bath mats in tubs, a low-rise shower with a no-step entry, wide doorways that allow wheelchairs to easily pass through, lever door handles (which are easier to operate than doorknobs), a step-free entrance to the home, and a large house number sign that can be easily read by paramedics and other emergency responders.
• Cell Phones for Seniors: Reviews and Ratings (MySeniorSource)
• Compression garments for medical therapy (National Library of Medicine) For lymphedema, among other problems; see various vendors, including Compression garments (Compression Guru).
• Conval-Aid
• Crest Healthcare Supply (call 1-800-328-8908)
• Dry shampoo (Theresa Holland, Byrdie, 2-4-22) After testing, 11 favorites. "These sprays, mists, and powders don't actually cleanse your hair. Instead, she explains, 'Dry shampoos are typically used to make the hair less oily, absorb sweat, and disguise odor.'"
• EnableMart
• Flaghouse (rehabilitation tools, aids to daily living, therapeutic aids, etc.)
• Freedom Wand (YouTube video, demonstration of device to help wipe yourself when you are unable to do so because of injury or disability)
• Fully Accessible Guide to Smart Home Tech for the Disabled and Elderly (Meg Cannistra, Reviews.com, 5-23-19) Smart light bulbs, smart hubs, robot vacuums, video doorbells, and smart locks.
• Gadgets for Growing Old at Home (John Leland, reporting from the International Consumer Electronics Show in Las Vegas, NY Times)
• Garden Kneeler and Seat (Yard Butler GKS-2). You can also buy a Garden Tool Pouch For Kneeler
• Gold Violin (lighting and magnification devices, adaptive furniture, cooking and gardening items-- does catalog sales for Lighthouse International)
• Grants for Families with Special Needs Kids (Kaufmann Children's Center) H/T to Jackie Nunes of Wonder Moms
• A Guide to Home Renovations and Modifications for Seniors and Individuals With Mobility Disabilities (General Contractors License Guide) Includes Home Safety Checklists for Seniors and People With Mobility Disabilities.
• HDIS (products for those who experience loss of bladder control, aka incontinence)
• HealthCraft sells at-home products (poles, rails, bath boards, grab bars, ceiling-mounted bars and trapezes to help you lift self in bed), commercial products (for safety in the bathroom, kitchen, bed, living room, and on stairs), and so on
• Healthy Kin.com
• Hearing Aid Buying Guide (Consumer Reports--explains differences in features; with a subscription you can see ratings for different hearing aids). I've been told Costco is the place to go for best price.
• Hearing Aids (reviews and consumer ratings, MySeniorSource)
• Mom Vs. Texas in a Fight to Get Kids’ Hearing Aids Covered (Dan Weissmann, An Arm and a Leg, KHN, 11-14-19) Texas now requires health plans to cover medically necessary hearing aids and cochlear implants for children.
• Heel Cushion Protector Pillow (DMI) Protect your heels from ulcers, pressure sores and more, relieve heel pain and discomfort so you sleep better, covers machine washable. Padding is soft, comfortable, light weight.
• HEPA Filters: Tips for using a HEPA filter (Betsy Ladyzhets, Covid-19 Data Dispatch
---The Best Air Purifier (Tim Heffernan, Wirecutter, NY Times, 6-30-23) "We’ve tested more than 50 air purifiers in the past nine years, and our measurements have proved that the exceptional Coway Airmega AP-1512HH Mighty is the best among them. It’s powerful enough to use in a large room, quiet enough to sleep near, engineered to last for years, and inexpensive enough to set up in multiple rooms."
---The 12 Best Air Purifiers (Wired)
---9 HEPA Air Purifiers and Brands for Every Room (Healthline) A high efficiency particulate air (HEPA) filter is a pleated device that can remove particles from surrounding air. A number of devices use these filters, such as air purifiers, which are designed to remove a host of particles and pollutants from the air in your home.
HEPA filters remove tiny particles from dust, mold, pollen, bacteria, viruses, and more from the air. Thin glass fibers are randomly arranged into a dense, paperlike material that is folded into pleats to create the filter. As air particles pass through these filters, pollutants are trapped in the fibers. Then, as larger particles stick to the filter, they keep other smaller particles from passing through. A HEPA filter can trap particles as small as 0.3 microns.
A HEPA filter is highly effective, filtering some of the smallest particles from the air. Other examples of filters include:
Ultra-HEPA filters or ULPA filters. These can trap up to 99.999 percent of particles 0.3 microns or smaller.
Electrostatic filters. These trap particles using a small static charge, which help the particles stick to the filter.
Electrostatic precipitators. These filters use metal plates or wires to attract particles with an opposite charge. They can often be washed and reused. Ionization. These filters rely on a small charge that emit a magnetic-like attraction to particles in the air. This type of filtration may release ozone gases and could cause irritation for people with respiratory diseases.
---A respirator (an advanced form of mask for filtering out particulates). CDC's explanation of two types of personal respirators: particulate respirators, which filter out airborne particles; and “gas masks” which filter out chemicals and gases. Image: the CDC NIOSH (National Institute for Occupational Safety and Health) respirator.
---The portable HEPA filter Betsy Ladyzhets traveled with on a train from Berlin to Brussels. Her partner wore an N95 mask.
• Home modifications when moving in an elderly parent (Coverage)
• How to Find a Free Medical Equipment Loan Program Near You (Kristen Gerencher, GoodRx Health, 8-26-22) Need a Walker or Wheelchair? Medical equipment loan programs let you borrow walkers, wheelchairs, shower chairs, and even hospital beds and computer devices for free.
• How to get a Free Electric Wheelchair (My Senior Source)
• Interiors for Independence (call 610-834-7849)
• Kitchen Remodeling Ideas for Seniors (Karen Paulsen, Consumers Base) How to improve general and task lighting, contrast, storage, counter height, etc., and sinks.
• Leonardo’s Laptop (Ben Shneiderman interview about human needs and computer design)
• Life with Ease (products to help you live life to the max in spite of impairments or injuries)
• Lo-Jack SafetyNet (Lo-Jack bracelet allows families to keep track of dementia-driven wanderers via radio signals, from the stolen-automobile recovery company)
• MaxiAids (products for people with impaired hearing, vision, or mobility)
• Meals on Wheels (a crucial service for the elderly and disabled who are living alone, unable to shop and cook for themselves. Many days the people delivering Meals On Wheels are the only people some elders see.)
• Medical alert systems (combine info from various evaluations to find what suits your situation and budget.
---Senior List's ratings of best systems
---Caring.com's 8 best Medical Alert systems
---How to Choose a Medical Alert System
---MedicAlert + Safe Return (Alzheimer's Association medical bracelet plus system for broadcasting an alert when a person with dementia wanders or is lost, providing access to vital medical info in time of need) See also AA's Comfort Zone (a Web-based GPS location management system, for use on body or in car).
• Medical device recalls (USDA)
• Mobility Store (mobility devices, scooters and wheelchairs, bathroom aids, personal care and patient care items, and other aids for daily living)
• Mattress and Bedding Guide for People with Disabilities (BestMattressReviews, a puzzling site, with a lot of interesting information)
• Mobility Scooters (MySeniorSource, reviews and consumer ratings)
• Ocelco medical products (call 1-800-328-5353)
• Orthotics and Prosthetics (Infinitec.org directory of catalogs and other resources)
• Patterson Medical (rehabilitation and independent living aids, including devices for eating, drinking, and cooking) Worth looking at for openers alone.
• Practical angles on living with a disability
• ReHabMart (tools for the job of living)
• SafetyBunns (comfortable non-restrictive pants for people who use wheelchairs, to keep them from slipping and falling from the chair. Story here from Shadra Bruce, MomsGetReal:Safety Bunns Helps You Keep Your Seat in a Wheelchair.
• Simple Changes to Make Your Home Safe for Aging in Place (Kate Van Dis, House Method, 5-11-19)
• Smart Home Technology for Seniors (AllConnect.com) Examples: Automatic stove turn-off devices, door locks and security systems, wifi-enabled refrigerators, automatic medication dispensers, smart home hub, smart light switch, smart thermostat, smart doorbell, key finders, health monitoring sensors.
• SmartPack Sac (a carryall for people with special needs--for example, using power and manual wheelchairs, scooters and walkers, or carrying special equipment like a Diavox or medical supplies-- a way to stow all their gear – in style)
• Talking Book Program (Library of Congress, answers to frequently asked questions)
• Traveling with limited mobility and other disabilities
• uCan Health (home healthcare products: safety and mobility aid, patient room equipment, items such as a bathtub transfer bench, to make it easier to get over edge of tub)
• Vehicle modifications for drivers with disabilities (United Tires, which has a great library of practical tips about tires
• Vitality Medical
• Waterproof foot and ankle cast cover and waterproof leg cast cover for shower, plus similar products for other body parts, from toe to bath and shower cover for arm, wrist, hand, etc..
• WestCanProducts.com (Wheelchair accessories and aids for the elderly, including wheelchair trays)
2. Organizations and sites helpful for improving life for seniors and the disabled
• AARP offers some helpful free booklets (also available online): I especially find the Home Fit Guide helpful; it shows smart solutions to make your home comfortable and safe--including maintenance lists, energy conservation tips, and universal design features that can help you or a loved one age in place.). Also available: booklets about making communities more livable: AARP Livability Fact Sheets (sections on Bicycling, Density, Economic Development, Form-Based Code, Modern Roundabouts, Parking--which have subsections on Myth-busting, Success Stories, How to Get It Right, and How to Get It Right) and Where We Live: Communities for All Ages (100+ inspiring ideas from America's mayors--guide to making communities more livable). Readable free online or you can order these free AARP livable communities publications here (one per customer).
• Abledata (Tools and Technologies to Enhance Life -- a federally funded project to provide objective information on assistive technology and rehabilitation equipment available from domestic and international sources). AbleData doesn't sell products; it provides lots of useful information about products in various categories: Aids for Daily Living; Blind and Low Vision; Communication; Computers; Controls; Deaf and Hard of Hearing; Deaf Blind; Education; Environmental Adaptations; Housekeeping; Orthotics; Prosthetics; Recreation; Safety and Security; Seating; Therapeutic Aids; Transportation; Walking; Wheeled Mobility; Tools to Help at Workplace. Take a look at products for housekeeping, or aids for dressing such as buttoning aids.
• Ability Magazine, a magazine covering health, disability, and human potential. It embeds VOICEYE (High Density code) on its editorial pages to hear print through smartphones and tablets—giving greater access to people with low vision, blindness or reading challenges.
• AbleGamers (online community for disabled gamers, including gamers with muscular dystrophy, deaf gamers, etc.)
• Accessible Web page design (for those serving disabled readers)
• Adult Recess (AARP, ) More and more towns, senior centers and retirement communities are filling their green spaces with playground-style equipment aimed at grownups. A community in Charlotte, N.C., is opening its second “intergenerational play space,” which has drawn many people who are attracted “not just to the physical play but to the social play."
• Advice from a Home Health Aide (by Jane Gross, The New Old Age, New York Times blog, 1-21-09))
• Aging Care
• Aging Parents Authority
• Agitator’s Guide to Elder Care (MediCaring.org)
• Alzheimer's (links to many resources)
• Americans with Disabilities Act home page
• Answers for families (Nebraska site that may be generally helpful)
• Assistivetech.net (searchable database on assistive technology (AT) and disability-related information)<
• Able Rise
• Accessible Environments, Inc. (call 1-800-643-5906)
• Active Forever , which also provides clear explanations of many health problems and medical tests (call 1-800-377-833)
• Adaptive Living Store
• AssistiveTech.net (resources in many categories, for assistive technology and for disability-related information)'
• AT Exchange (Ability Tools, Assistive Technology Network) Connects Californians to the assistive technology (AT) devices they need to live independently.
• Caregivers, caregiving, and preventing or minimizing caregiver burnout (links to many helpful resources and articles)
• Caring for an Ill Spouse, and for Other Caregivers Alix Kates Shulman (NYTimes 9-9-11).
• Caregiving 101 (Debbie Newsham's blog on trying to stay positive while caring for her father, who has dementia)
• Caring for the Elderly (Jane Gross’s excellent list of resources, categorized as government sites, housing and services, caregiving, legal and financial, end of life, miscellany, advocacy, emotional support)
• Caring Today’s blogs, including Debbie Newsham's My So-Called (Caregiver) Life
• Center for Aging with Dignity (scroll down to find useful articles on various aspects of aging and caregiving, for practical advice on safety concerns with aging drivers, and for insights into grieving)
• CAST (Center for Aging Services Technologies, some useful links for disabled or older people)
• Comfort Zone and Comfort Zone Check-In. Alzheimer's Association Comfort Zone®, powered by Omnilink, provides location updates. Family members can monitor a person's location, while the individual with Alzheimer's can maintain their independence and enjoy the emotional security of familiar routines and surroundings. A Web application that includes a location-based mapping service, or LBS. See also Medic Alert.
• Designing a Better Day: Guidelines for Adult and Dementia Day Services Centers by Keith Diaz Moore, Lyn Dally Geboy, and Gerald D. Weisman
• A difficult drive in a suit that mimics aging (Vivian Nereim, Boston Globe, 6-18-09)
• The Digital Divide of Disability.NPR's On the Media hosts people from Knowbility, an organization that advocates for technology that allows blind, deaf and otherwise disabled people to use the Internet (and things like AbleGamer video games)
• Dignity Therapy. For the Dying, A Chance to Rewrite Life (Alix Spiegel, Morning Edition, NPR 9-12-11). Listen or read transcript.
• Disability.gov (online resource for Americans with disabilities)
• Disability resources (Syracuse Center on Human Policy, Law, and Disability Studies). Links to useful resources in many categories, including Family supports and academic programs in disability studies.
• Disabled World (disability and health news)
• Disaster preparedness for people with special needs (Red Cross)
• Discussion Groups (CATEA Assistivetech.net, National Public Website on Assistive Technology)
• Doctors say medication overused in dementia (AARP Bulletin)
• The Do’s and Don’ts of Signing a Nursing Home Admission Agreement as a Responsible Party (Henry C. Weatherby, ElderCare Matters, April 2014)
• Eldercare locator (download their useful booklets on transportation and housing options)
• Emergency Readiness for People with Disabilities (Centers for Disease Control and Prevention)
• Engage with Grace and the One Slide Project. To help ensure that all of us--and the people we care for--can end our lives in the same purposeful way we lived them. See also Watch the Engage with Grace Story (Video, Za's Story) and Download the One Slide (PDF)
• Everyone Communicates (augmentative and alternative communication, for when a person loses the ability to speak)
• Family Support 360 Initiative (providing grants to local service providers to help families with developmental disabilities)
• *Family Village (a global community for disability-related resources)
• *Faulty medical devices. What you should know about them.
• Fire Safety and Disabilities Guide (Andrea Davis, ImproveNet.com, 4-4-16)
• Fully Accessible Guide to Smart Home Tech for the Disabled and Elderly (Meg Cannistra, Reviews.com, 5-23-19)
• Grants for Home Modification: 16 Resources for Homeowners with Disabilities (HomeAdvisor) Source for many of the links on this page.
• Guide to Securing Life-long Accommodations for Adult Children With Special Needs (Redfin blog, 4-10-16)
• How much will your project cost (True Cost Guide, Home Advisor) Scroll down to click on specific aspects of changes in electrical, cabinets, etc.
• Home Adaptations for Your Needs (HomeAdvisor)
• Home Automation for Seniors (AllConnect.com, Smart Home Technology for Seniors) Scroll through the list of devices below to learn more about how smart home technology can add ease and convenience to your everyday life--e.g., automatic stove turnoff devices, key finders, wifi-enabled (smart) refrigerators that keep track of your grocery list and deliver things it senses you need to a participating grocery store near you).
• Home Remodeling for Disability and Special Needs: What You Need to Know (Michael Sledd, Expertise.com, 6-17-15) Covers several important topics: (1) Federal resources for veterans, seniors, and disabled citizens; (2) Planning your remodeling project; (3) Creating accessible approaches, landscapes, and doorways; (4) Disability friendly flooring; (5) Electrical, lighting, and smart-home technology; (6)Handicap-accessible bathrooms; (7) Handicap-accessible kitchens; (8) Remodeling for special needs. And concludes with links to valuable resources and pages of information.
• How much will your project cost (True Cost Guide, Home Advisor) Scroll down to click on specific aspects of changes in electrical, cabinets, etc.
• In a Charmed Life, A Road Less Traveled (Layng Martine Jr, "Modern Love" column, NY Times 3-6-09), how love and the help of others help sustain this couple when a car accident makes her paraplegic)
• Increase Mobility, Brighten Your Outlook with Yoga Stephanie Golden on Yoga and Arthritis, Cleveland Clinic Arthritis Advisor, March 2004)
• Independent Living Centers (a directory)
• Independent Living Institute (promoting disabled people’s self-determination)
• International Longevity Center (navigating the age boom)
• Interpreters for the Deaf, Registry for (RID, searchable U.S. database through which to locate individual interpreters)
• KnowItAlz (Alzheimer’s Caregiver Community)
• Lessons from the Lost. NY Times video story about law enforcement officers learning how to search for missing persons with Alzheimer's or dementia. For the first time, more missing persons are elderly, with dementia, and may not know they are lost. Missing children used to be the main target of searches.
• Living in the State of Stuck: How Assistive Technology Impacts the Lives of People With Disabilities by Marcia J. Scherer
• Making Rounds with Oscar: The Extraordinary Gift of an Ordinary Cat by David Dosa (about a cat who senses death and stays to comfort the dying, but also about Alzheimer's and geriatric care and nursing homes and being there, at the end of life)
• Meals on Wheels (a crucial service for the elderly and disabled who are living alone, unable to shop and cook for themselves. Many days the people delivering Meals On Wheels are the only people some elders see.)
• Meals on Wheels May Be Your Best Meal Ticket (Robert Littke with Harry Margolis, podcast from ElderLaw Radio).
• Meals on Wheels testing app to keep tabs on homebound elderly (Liz Seegert, Covering Health, AHCJ, 7-19-19) With an app-based monitoring program, drivers are able to quickly and proactively notify Meals on Wheels care coordinators about any health or safety issues among their clients, facilitating connections with additional services and supports.
• Medicare Compare. Sites for comparing information about physicians, hospitals, nursing homes, home health agencies, dialysis facilities--on HealthCare.gov
• Medicare's Hospital Compare (search and compare hospitals)
• Medicare's Nursing Home Compare (an interactive tool allows you to search and compare detailed information about every Medicare and Medicaid-certified nursing home in the country)
• Medicare Guide to Choosing a Nursing Home (PDF file)
• Mind Our Elders (Carol Bradley Bursack)
• My Elder Advocate (the meeting place for elderly concerns)
• My So-Called (Caregiver) Life
• National Association of Professional Geriatric Care Managers (NAPGCM) (GCMs can help assess elders' long-term care needs, find them a place to live, and help them navigate the health-care system--for example, hiring private nurses, as needed, for fees that range from $80 to $200 an hour)
• National Clearinghouse for Long-Term Care Information
• *National Library Service for the Blind and Physically Handicapped (Library of Congress, free library program of braille and audio materials circulated to eligible borrowers in the United States by postage-free mail)
• Network of care
• A New Life on Wheels... How to Cope With Your Loss, and Move On (1-800-Wheelchair.ca) Links to many helpful articles about disability resources, making your home wheelchair friendly, modern wheelchair inventions, and so on.
• Nursing home checklist (Medicare, what to look for)
• Nursing Home Compare (Medicare's interactive tool allows Medicare beneficiaries and their caregivers to search and compare detailed information about every Medicare and Medicaid-certified nursing home in the country)
• Ombudsmen, by state (federally funded advocates for nursing home patients, who can find latest health inspection reports for a nursing home and tell you how many complaints have been filed about it).
• Orthopedic chairs for the elderly (My Senior Source)
• Ouch! It's a disability thing! (blogs, message boards, podcasts by Mat Fraser and Liz Carr, videos with subtitles, funny computer wallpaper, news reflecting the wider view of life for disabled people)
• OurAlzheimer’s.com
•Pass It On Center (Georgia Tech, with information about organizations that recycle AT devices)
• Program of All-Inclusive Care for the Elderly (PACE), an optional benefit under Medicare and Medicaid that helps older people frail enough to meet state standards for nursing home care stay in their home.PACE offers and manages all the medical, social and rehabilitative services enrollees need to preserve or restore their independence, stay in their homes and communities, and maintain their quality of life. Listen to this interview on Kansas Public Radio about PACE. There is evidence that this new model of care is effective, but it is not yet widely available. Here is a current list of PACE-provider organizations
• SeniorHomes.com
• SeniorNet provides nonprofit computer and Internet education for older adults and seniors -- a site for content and community
• Small Mercies (Canada's Veterans Independence Program successfully provides assistance with home care instead of facility care)
• Smart Tech for Seniors (Frontier Internet) Among other suggestions: Apple iPhone, Wi-Fi-enabled refrigerator, Smart TV, Smarter iKettle 2.0 Wi-Fi Kettle, AdhereTech (an Internet-connected smart pill bottle), MedMinder (a digital pill dispenser that unlocks automatically, monitors dosage, and updates caregivers), Reminder Rosie (a voice-activated talking clock that issues medicine reminders), an auto stove shut-off device (Motion sensors assess whether you’ve gone out/forgotten about stove. Timer turns stove off for your safety.), and health monitoring sensors (Wearable Sensors communicate physiological data to care providers in real time).
• 10 Things to Know About Assisted Living (Jane Gross, NY Times)
• 3GenFamily blog (caring for parents, raising teens, and staying sane)
• Time banks build economies — and communities — without the almighty dollar (Justin Wm. Moyer, Wash Post, 4-26-19) Silver Spring Time Bank is one of more than 100 such exchanges around the world trying to build community by exchanging time credits for services instead of dollars and cents. ‘I like giving the gift of time to other people.’
• Tips on Caring for Aging Parents (Elizabeth Alterman, CNBC.com, 6-19-12)
• Universal home design (AARP)
• Vocational rehabilitation (fact sheet - pdf format)
• Walk-In Showers for the Elderly (My Senior Source)
• Walk-in Tub Pros and Cons (My Senior Source) and Best Walk-In Bathtub Companies (click on "read reviews" to hear pros and cons of specific walk-in bathtubs, ConsumerAffairs Buyers Guides), plus What are the types of walk-in bathtubs? (soaker, aerotherapy, hydrotherapy, combination walk-in, wheelchair-accessible, bariatric, explained briefly)
• Well Spouses Association. Support and support groups for spousal caregivers. Read Alix Kates Shulman's story about the importance of a caregivers support group.
• What is the best walker for the elderly? (MySeniorSource)
• What I Wish I'd Done Differently (Jane Gross, on the four biggest mistakes she made while caring for her mother)
• What to Know If You Are The Boss of a Caregiver (Victoria E. Knight, Wall Street Journal, 3-19-09)
• Who Cares? (Federal Trade Commission on sources of information about health care products and services)
• Who Takes Care of Mom? by Francine Russo (Time, 2-1-2010), author of They're Your Parents, Too!: How Siblings Can Survive Their Parents' Aging Without Driving Each Other Crazy
• Why Hire a Geriatric Care Manager? (by Jane Gross, The New Old Age, New York Times blog)
• The Wrong Care for Dementia Patients (Tara Parker-Pope, Well blog, NY Times)
2. Organizations and sites helpful for improving life for seniors and the disabled
• AARP offers some helpful free booklets (also available online): I especially find the Home Fit Guide helpful; it shows smart solutions to make your home comfortable and safe--including maintenance lists, energy conservation tips, and universal design features that can help you or a loved one age in place.). Also available: booklets about making communities more livable: AARP Livability Fact Sheets (sections on Bicycling, Density, Economic Development, Form-Based Code, Modern Roundabouts, Parking--which have subsections on Myth-busting, Success Stories, How to Get It Right, and How to Get It Right) and Where We Live: Communities for All Ages (100+ inspiring ideas from America's mayors--guide to making communities more livable). Readable free online or you can order these free AARP livable communities publications here (one per customer).
• Abledata (Tools and Technologies to Enhance Life -- a federally funded project to provide objective information on assistive technology and rehabilitation equipment available from domestic and international sources). AbleData doesn't sell products; it provides lots of useful information about products in various categories: Aids for Daily Living; Blind and Low Vision; Communication; Computers; Controls; Deaf and Hard of Hearing; Deaf Blind; Education; Environmental Adaptations; Housekeeping; Orthotics; Prosthetics; Recreation; Safety and Security; Seating; Therapeutic Aids; Transportation; Walking; Wheeled Mobility; Tools to Help at Workplace. Take a look at products for housekeeping, or aids for dressing such as buttoning aids.
• Ability Magazine, a magazine covering health, disability, and human potential. It embeds VOICEYE (High Density code) on its editorial pages to hear print through smartphones and tablets—giving greater access to people with low vision, blindness or reading challenges.
• AbleGamers (online community for disabled gamers, including gamers with muscular dystrophy, deaf gamers, etc.)
• Accessible Web page design (for those serving disabled readers)
• Adult Recess (AARP, ) More and more towns, senior centers and retirement communities are filling their green spaces with playground-style equipment aimed at grownups. A community in Charlotte, N.C., is opening its second “intergenerational play space,” which has drawn many people who are attracted “not just to the physical play but to the social play."
• Advice from a Home Health Aide (by Jane Gross, The New Old Age, New York Times blog, 1-21-09))
• Aging Care
• Aging Parents Authority
• Agitator’s Guide to Elder Care (MediCaring.org)
• Alzheimer's (links to many resources)
• Americans with Disabilities Act home page
• Answers for families (Nebraska site that may be generally helpful)
• Assistivetech.net (searchable database on assistive technology (AT) and disability-related information)<
• Able Rise
• Accessible Environments, Inc. (call 1-800-643-5906)
• Active Forever , which also provides clear explanations of many health problems and medical tests (call 1-800-377-833)
• Adaptive Living Store
• AssistiveTech.net (resources in many categories, for assistive technology and for disability-related information)'
• AT Exchange (Ability Tools, Assistive Technology Network) Connects Californians to the assistive technology (AT) devices they need to live independently.
Health problems, surgery, aches and pains
• Patients Freed to Live Life Through Program Targeting Advanced Illness Management (AIM) (Betsy Gornet, American Society on Aging (ASA). AIM patients spend less time in the hospital and manage their pain and symptoms better through the innovative care provided.• Avoiding Surgery in the Elderly (Paula Span, The New Old Age, NY Times, 1-26-12). For the very old and frail, surgery can become a source of danger in itself.
• Joint replacement had been a success, but pain persisted in patient’s shoulder ( Sandra G. Boodman, Washington Post, 7-22-13). Be your own advocate and make sure they ask about allergies to other metals, including nickel, in those titanium parts.
• At Too Many Hospitals, a Revolving Door (Judith Graham, New Old Age, NY Times, 7-23-13). Hospitals need to learn that if a patient isn’t ready to hear what a medical provider wants to say, meaningful communication becomes impossible--some patients cannot assimilate medical advice at the time of their discharge. And they need more than a sheaf of papers to feel comfortable going home.
• For the Elderly, Emergency Rooms of Their Own (Anemona Hartocollus, NY Times, 4-9-12). Geriatric emergency rooms, specifically designed for the elderly, are part of a growing trend. See also Emergency Rooms Built With the Elderly in Mind (Alyson Martin and Nushin Rashidian, The New Old Age blog, NY Times, 3-14-11). These are motivated in part by hospitals' desire to find an edge in the increasingly competitive health care marketplace.
• When Is the Worst Time to Go to the Hospital? (Pauline W. Chen, MD, NY Times 3-18-10)
• Overprescribing the Healthy Elderly: Why Funding Research and Drug Safety Is Paramount (Laura Newman, Scientific American guest blog, 6-30-11)
• Arthritis Supplies (online catalog of aids for daily living
• Living Better with Arthritis (catalog of aids for arthritis--for comfort & therapy; communication; dressing/grooming; foot care; house, car and garden; kitchen; resting and relaxation; bath.
• Remedies for Nail Fungus (Anahad O'Connor, Ask Well, NY Times, 4-8-13). Is there any cure for toenail fungus that doesn’t involve a risky drug? Yes. Don't spend $1000 for laser treatment, as I did (and it was administered by a young woman, not the doctor).
• SteriShoe shoe sanitizer . It sez here that using ultraviolet light (UVC), the SteriShoe shoe sanitizer (which you insert inside shoes) kills the organisms that cause toenail fungus, athlete's foot, and smelly shoes. $130
• Medical Mysteries (Sandra G. Boodman's interesting series in the Washington Post--not a bad place to start reading if you're dealing with a problem your medical caregivers aren't fixing or alleviating)
• Coping with cancer and critical illness
• Coping with chronic, rare, and invisible diseases and disorders
• Medical mysteries, patient stories, and places to read up on illness (resources for specific diseases, conditions, syndromes, including rare diseases--not otherwise covered in two categories above)
• Memoirs of illness, crisis, disability, differentness, and survival (a reading list)
• Discussion groups and chat rooms about specific problems (assistivetech.net)
Changing Attitudes About Disability
• NDEAM 2015: My Disability is One Part of Who I Am (Jennifer Sheehy, U.S. Dept. of Labor blog, 10-5-15)
• Adaptive Action Sports, nonprofit organization cofounded by Amy Purdy, to help people with physical disabilities get involved in action sports, go snowboarding, skateboarding, etc. Purdy is co-author (with Michelle Burford) of On My Own Two Feet: From Losing My Legs to Learning the Dance of Life Growing up, Amy Purdy was an artist and board sport enthusiast. Her goal was to spend a few years traveling the world and snowboarding when suddenly, at the age of 19 her life changed forever. After a day of flu like symptoms Amy was rushed to the hospital in a state of septic shock and diagnosed with Bacterial Meningitis, a deadly blood infection. Amy fought for her life for nearly 3 months, leaving the hospital a completely different person physically, mentally, and spiritually. Amy lost both of her legs below the knee, as well as all kidney function, but it didn't stop her from following her dreams. A world-class snowboarder and 2014 Paralympic bronze medalist, she also danced on Dancing on the Stars.
• Disability Is Natural: Revolutionary Common Sense for Raising Successful Children with Disabilities by Kathie Snow. Check out her website for many other useful resources: Disability Is Natural.
• Renting with Disabilities (Tenant Resource Center for Housing Justice in Wisconsin). Search for similar sites in other states, but this may be helpful generally, too.
• ADA: Disabilities & Your Rights as an Employee (FindLaw)
• Past Due: A Story of Disability, Pregnancy, and Birth by Anne Finger (a frankly detailed story about home birth by a woman with postpolio problems that make giving birth "problematic" -- also opens one's eyes to the stereotypes people have toward disability and to the complexities of reproductive rights).
• Reflections from a Different Journey: What Adults with Disabilities Wish All Parents Knew , ed. Stanley D Klein and John D. Kemp (40 stories by successful adults who grew up with disabilities
• No Pity : People with Disabilities Forging a New Civil Rights Movement
• Why I Wrote the Americans with Disabilities Act ( Robert L. Burgdorf Jr., U.S. Dept. of Labor blog, 7-29-15) "The ADA was a response to an appalling problem: widespread, systemic, inhumane discrimination against people with disabilities. ...a good reminder of what our nation’s leaders can accomplish when they meet each other in a spirit of civility and compromise." An interesting article.
• National Veterans Wheelchair Games (Dr. Govloop)
Blogs about disability
• Abled
• AbledBody (where can-do is done different) This consumer website (with guest bloggers) covers disability news and assistive and emerging technologies for people with disabilities. Suzanne Robitaille, founder of AbleBody, also writes a column for the Huffington Post.
• Can-Do-Ability
• The DD News Blog . News, information, and commentary for families and friends of people with developmental disabilities.
• DeafRead (best of deaf blogs and vlogs). Includes A deaf mom shares her world
• Disability & Media Matters (Shawn Burns writes about how people with disability are represented in the Australian news media and how they feel about that.
• Disability.Blog, the official blog of Disability.gov, features weekly posts by experts on topics important to people with disabilities, their families, and others.
• Disability Scoop. A premier source for disability news, with daily coverage of developmental disability news, including intellectual disability, autism, cerebral palsy and Down syndrome).
• Disability Studies (Temple U)
• E-bility (an online resource for people with disability)
• Fred's Head (a blindness blog, rich in resources)
• Girl in a Party Hat (Raising Sophie). Amy Silverman blogs about her daughter Sophie, who has Down syndrome
• Have wheelchair will travel (Richie, 17 and in a wheelchair, travels around the world with his family.)
• Jan's Group Home Support (resources, ideas, and support for caregivers)
• kathiecomments Retired clinical psychologist Katherine Schneider writes about aging, disability and assisted services, including service dogs.
• Martyn Sibley
• McGuire on Media. Tim McGuire blogs about news media and journalism education and occasionally writes about disability from a personal perspective.
• Media dis&dat . News and information about people with disabilities and disability issues.
• Melissa's Solid Ground (for children and adults who have parents with disabilities to share their experiences and just talk to each other in a secure and safe environment)
• Melissa's Dad Reflecting on a 22 year journey as the father of a daughter with special needs.
• Meyrick Jones Racing (The diary of an endurance sports enthusiast with big dreams to represent Canada at the 2010 Paralympic Games in Vancouver.)
• Ouch blog (Brothers, sisters, and disability) (BBC's monthly dose of disability radio -- exploring the disability world in blog posts and a monthly internet radio talk show)
• Rolling Rains Report (precipitating dialogue on travel, disability, and universal design)
• Sense and Disability (Chelsey Blair's blog on being a young adult with a disability)
• Service Dogs
• Shaping Our Lives. A national UK network of service users and people with disability.
• Still Outdoors Adventure is still possible!
• 100 Best Blogs for Disabled People and Carers (Stairlifts Reviews). Annotated so you can find the ones that suit your situation. Geared to UK. Includes blogs about traveling with a disability.
Traveling with limited mobility and other disabilities (books on)
• Access Anything: I Can Do That! - Adventuring with Disabilities by Andrea & Craig Kennedy
• Traveling With Disabilities (Kojo Nnandi show, 11-3-15). After a five-hour flight from San Francisco to D.C., D’Arcee Neal, who has cerebral palsy and could not use the airplane bathroom, simply couldn’t wait any longer and crawled off the plane when the airline failed to bring him the wheelchair made to fit the plane’s aisle. Although federal laws require equal accessibility to transportation for people with disabilities, his experience is not uncommon. Kojo talks with D’arcee and other disability rights activists about what happened to him and how similar events can be avoided in the future.
• Do you need travel insurance? (Consumer Reports, July 2012) Maybe, if there are gaps in your auto, health, life, or homeowners policies. But buy wisely. "Instead of buying a policy through a travel agent or booking site, go to an online broker such as InsureMyTrip.com, which sells coverage from 21 carriers, including CSA Travel Protection, MedJet Assist, and Travelex." See reviews of travel insurance plans.
• The Essential Guide to Travelling with a Medical Condition (InsuranceWith) a pretty good guide to traveling with a medical problem or disabily, plus they sell travel insurance.
• Barrier-Free Travel:A Nuts And Bolts Guide For Wheelers And Slow Walkers by Candy B. Harrington (author of 101 Accessible Vacations: Vacation Ideas for Wheelers and Slow Walkers and There Is Room at the Inn: Inns and B&Bs for Wheelers and Slow Walkers)
• Rick Steves' Easy Access Europe: A Guide for Travelers with Limited Mobility
• These Aren’t Tykes on Little Bikes: A Mature Market Adopts the Tricycle (Rachel Bachman, Wall Street Journal, 10-9-14). See also Adult tricycles (article by Emily Stokes, "The Third Way: Tricycles," in T, 11-11-14). And Adult tricycles (a Best Reviews guide).
Traveling with disability blogs and websites
• Abiitytrip (accessible, fun travel for all)
• Barrier Free Travels (Candy Harrington's blog with travel info for slow walkers and wheelchair users)
• BootsnAll (one-stop indie travel guide, recommended by World on Wheels)
• Chris Eliot, travel ombudsman
• DisabledTravelers.com
• Emerging Horizons (travel info wheelchair users and slow walkers)
• Flying with Disability
• Global Access News (Disabled Travel Network). See its disability links
• Limitless Travel (UK a company that specializes in accessible holidays and tours)
• 92 and Still Driving? Seniors At The Wheel (Debbie Brodsky).
• Rolling Rains Report (precipitating dialogue on travel, disability, and universal design)
• Simply Emma (UK), Scottish blogger who loves to travel writes about doing so in a wheelchair)
• Tourism Is for Everybody (a UK firm that works with businesses and policymakers to promote accessible tourism in the UK)
• Travels with Pain (helping travelers with hidden disabilities explore the world)
• The World on Wheels (a blog). Tim, disabled from birth, travels with a wheelchair; Darryl, his father and caregiver, travels with him.
MISCELLANEOUS TOPICS AND ISSUES
Homelessness
• ‘Go Ahead and Vote Me Out’: What Other Places Can Learn From Santa Rosa’s Tent City (Angela Hart, KHN, 4-8-21) The number of people living homeless in Santa Rosa surged after three punishing wildfire seasons that destroyed thousands of homes in four years. City Council member Tom Schwedhelm, then serving as mayor, settled on an idea to pitch dozens of tents in the parking lot of a gleaming community center in an affluent neighborhood known as Finley Park, a couple of miles west of Santa Rosa’s central business district. “We have estates that sell for $20 million, and then you walk by people sleeping in tents with no access to hot food or running water,” said Lynda Hopkins, chair of the Santa Rosa county board of supervisors. “These tiny villages — they’re not perfect, but we’re trying to provide some dignity.” Hart writes about what made this one work.
• What People Experiencing Homelessness Need Most Besides Shelter? (from sources across the Web)
Socks (living on the street, many unsheltered people rarely take their shoes off.) Clothing, underwear, gloves. Blankets. Sleeping bags, Personal hygiene items (chapstick, comb, soap, shampoo, hand sanitizer, wet wipes, toothbrush and toothpaste, menstrual hygiene products). Food and water. Pet food. Gift cards and transportation passes. Sunscreen. Raingear. Compassion.
• Moved along: What it’s like to be homeless and repeatedly displaced (Grace Benninghoff, Portland Press Herald, 12-3-23) Meet 35-year-old Desirae Rowe, one of the many people who have been caught up in the regular sweeps of Portland, Maine's encampments. Listen or read.
---Sanford takes progressive approach on homeless camps as tents spike (Gillian Graham,Portland Press Herald, 12-11-23) As of Nov. 29, 153 people were living outside in Sanford – a striking number compared to the same time two years ago, when the city counted just 10.
---Proposal to allow homeless encampments in Portland draws ire from city departments, residents (Grace Benninghoff, Portland Press Herald, 11-9-23) Homeless encampments, where the homeless gather in tents and makeshift shelters, are a source of fierce controversy and debate in the city. The City Council will hear a first read of a new proposal to allow public camping through the winter and also will vote for the third time on a proposal to temporarily expand shelter capacity.
• The Root Cause of the Homelessness Crisis (Jerusalem Demsas, The Atlantic, 7-18-23) Researchers at UC San Francisco have released the largest representative survey of homeless people in more than 25 years. "Homelessness is primarily a function of the broader housing-unaffordability crisis, which in turn is primarily a function of how difficult local governments have made building new housing in the places that need it the most....California is home for most of its homeless population. The most frequently reported reason for loss of housing was reduction of income due to unemployment or a decrease in work hours. Economic reasons were followed by two social ones: conflict among residents, and concerns about imposing on roommates or family members. These social reasons would, in a more affordable environment, lead simply to a change of address, not homelessness.
• US homelessness skyrockets: WSJ (Emma W. Thorne, Editor at LinkedIn News) Approximately 11% more people were homeless in 2023 than in 2022, bringing the total to up to over 577,000 people, according to a Wall Street Journal review of data from around the country. If accurate, this would stand as the biggest increase by far since the government started tracking these numbers in 2007. The next-biggest jump was 2.7% in 2019. What's behind these numbers? The Journal cites ballooning housing costs, lack of affordable rentals and the opioid crisis.
• Why Grandpa Is Homeless (Rachel Nuwer, Pacific Standard, 1-9-17) A sagging economy, a complex job market, and a lack of social programs have led to an increase in the number of elderly people living—and dying—on the streets. Radical efforts to end homelessness: Old, Sick, and On the Street One of Pacific Standard's always excellent pieces/series.
• Visions of the Rust Belt Future (Part 1, Richey Piiparinen, NewGeography 4-27-13). Also Part 2 analyzes whether or not there is a new way forward for post-industrial cities, using the lessons from Pittsburgh and Cleveland as a guide.
• A homeless child is killed in a hotel that was supposed to be a home (Petula Dvorak, Washington Post, 2-13-2020) The Quality Inn on New York Avenue NE is a hotel that serves as one of the city’s biggest emergency homeless shelters for families — and its biggest shame. The place looks battered. The bathrooms on the ground floor didn’t always work, the walls were scuffed and filthy, the carpet was threadbare. Residents say they are treated like inmates. The hotel does minimal maintenance, the maid service is weekly, the fitness center is shut down. The contract with Axar Management was for about $5.5 million this year, according to a D.C. inspector general’s report on this.
• ‘I wasn’t crazy’: A homeless woman’s long war to prove the feds owe her $100,000 (Petula Dvorak, WaPo, 8-22-16) Most folks dismissed Witter as crazy as she roamed the nation’s capital with a hand-truck loaded down with three suitcases packed full of Social Security paperwork. And most counselors believed that mental illness, rather than messed up Social Security payments, were her problem.
• National Alliance to End Homelessness
• Room for Improvement (Scott Carrier, Mother Jones, Feb. 2015) Clean up cities. Give the homeless a place to live. And save money too? The shockingly simple, surprisingly cost-effective solution that won over a bunch of conservatives in Utah.
• Homelessness Assistance (HUD.gov)
• Mental disorders keep thousands of homeless on streets (Rick Jervis, USA Today, 8-27-14) A series: Mental Illness: The Cost of Not Caring. Individual pieces: Early intervention could change nature of schizophrenia. The Fortunate Mother: Caring for a son with schizophrenia. Cost of not caring: Stigma set in stone. Cost of not caring: Nowhere to go. Substance abuse treatment often impossible to find.
• Baltimore Station. The Baltimore Station is an innovative therapeutic residential treatment program supporting veterans and others who are transitioning through the cycle of poverty, addiction, and homelessness to self-sufficiency. Did you know? 40% of homeless men are veterans. 200,000 homeless veterans sleep on the streets every night. 76% of homeless veterans experience alcohol, drug, or mental health problems? “There is a turning point in every war. Ours is when a man comes in off the streets, through our door.”
• Hanging Out With the Tech Have-Nots at a Silicon Valley Shantytown ( Josh Harkinson and Prashanth Kamalakanthan, Mother Jones, 12-2-14) We took a video camera to the vast homeless camp a stone's throw from Apple HQ. "In the heart of Silicon Valley, a stone's throw from Apple's headquarters, is a 68-acre homeless camp that's widely believed to be the largest in the country. The Jungle, as it's known, is more accurately described as a shantytown: a collection of shacks, adobe dugouts, and treehouses inhabited by some 300 people, many of whom have lived here for years. In a land of million-dollar bungalows, it's a last place of refuge for many locals who've missed out on the booming tech economy." "It's hard for us to find spaces for folks, especially when they are competing with young techies."
In Wealthy Silicon Valley, 300 Evicted from Homeless Camp (Bill Moyers, 1-8-15)
• Tent City, America (Chris Herring, Places, Dec. 2015) Tent cities are now so common that advocates are campaigning to make them semi-permanent settlements of micro-housing. But is this a genuine solution or merely a quick fix?
• Reforming the U.S. healthcare system
• Rights Battles Emerge in Cities Where Homelessness Can Be a Crime (Jack Healy, NY Times, 1-9-17) Activists and homeless people are waging public campaigns and court fights against local laws that ban urban camping, as some politicians urge a "zero tolerance" policy. See links to more NY Times stories on homelessness
• D.C. Homelessness Doubles National Average as Living Costs Soar (Noah Weiland, NY Tims, 1-1-17) Record housing prices are cited as one cause leaving students and working class people with nowhere to turn but an overburdened shelter system.
• Builders That Got Tax Breaks Must Set Aside Some Units for Homeless, City Says Charles V. Bagli, NY Times, 11-4-16) "The de Blasio administration now wants up to half of all community-preference units to be reserved for people living in homeless shelters. In a 300-unit building, that could mean up to 15 apartments for tenants who were previously homeless."
Identifying and dealing with elder abuse
• Elder Abuse: Know the Signs (WebMD)
• Facts about elder abuse (NIH, National Institute on Aging) Signs of abuse, types of abuse, and other topics covered.
• Top 10 Financial Scams Targeting Seniors (National Council on Aging)
• Preventing Elder Abuse (CDC) What is elder abuse? How big is the problem? What are the consequences? How can we prevent elder abuse before it starts? Violence prevention: 1-800-CDC-INFO (232-4636)
• Elder abuse commonly committed by relatives, study indicates (Liz Seegert, Covering Health, AHCJ, 8-23-19) "Relatives, not strangers, may be the people most likely to take advantage of older adults, according to a new study by University of Southern California researchers. Their analysis found that family members were allegedly most likely at fault across all abuse types, except for sexual abuse and self-neglect....Of the nearly 2,000 calls logged for the study, more than 42% (818 calls) alleged abuse. Financial abuse was the most commonly reported at nearly 55% (449 calls). The most common abuse perpetrated by the family was financial abuse (61.8%), followed by emotional abuse (35%), neglect (20.1%), physical abuse (12%) and sexual abuse (0.3%). Of the calls that alleged abuse by a family member, more than 32% reported more than one abuse type."
• Top Elder Abuse Resources for Victims of Nursing Home Abuse (NursingHomeAbuse.org) Scroll down for state-by-state links to resources.
• Elder Justice Coalition
• What is elder abuse? (Administration for Community Living)
• National Association of Nursing Home Attorneys (NANHA) A legal support system for victims of nursing home abuse or neglect
• Physical abuse and how to spot it (NANHA)
• Preventing elder abuse, guardianship problems, and scams (blog post on this website)
• Scams and Frauds (AARP)
• Preventing fraud, elder abuse, guardianship problems and romance scams
• Helping Banks Flag Fraud Against Seniors (Elizabeth Olson, NY Times, 8-18-18)
• Scams and Frauds AARP's full set of links to coronavirus scams and other types of scams, especially of the elderly
• The Ultimate Internet Safety Guide for Seniors (Safety Detectives)
• Elder abuse in R.I.: Reported attacks on the rise, yet most perpetrators avoid prison (Jack Brook, Rebecca Ellis, Katrina Northrop and Asher Woodbury, Providence Journal, 8-24-18)
• Preventing and Addressing Abuse in Nursing Homes (WatchBlog, US Govt Accountability Office, 8-21-19)
• Calls for Court Reform as Legal Guardians Abuse Older Adults
"An individual with a physical or intellectual disability, then, is said to be 'handicapped' by the lowered expectations of society. A person may also be 'impaired' either by a correctable condition such as myopia, or by an uncorrectable one such as cerebral palsy. For those with mild conditions, related impairments disappear with the application of corrective devices. More serious impairments call for adaptive equipment."
~ Disabled World, "The Language and Terminology of Disabiity"
Legal and Financial Decision-Making
• Advance directives, living wills, Medicare, and other practical matters
• Benefits.gov. The official benefits website of the U.S. government. Informs citizens of benefits they may be eligible for. Provides information on how to apply for assistance.
• The Complete Guide to Disability Claims, Insurance and Benefits (DisabilityDenials.com, associated with Marc Whitehead's disability benefits law firm). I tend not to list links associated with law firms, but this guide looks pretty useful). The firm also offers free ebooks (which I did not examine) about Disability Insurance Policies, The Social Security Disability Puzzle, and Veterans Disability Claims.
• Disability Planning (ElderLawAnswers)
• How to apply for SSI
• Japan’s elderly turn to life of crime to ease cost of living (Leo Lewis, CNBC, 3-26-16) Japan's shoplifting crime wave represents an attempt by those convicted to end up in prison — an institution that offers free food, accommodation and healthcare.
• Long term care insurance (links to articles and sites that answer your questions) Should you or should you not buy long-term care insurance? How much? Can you afford it? Where to learn about options. Do premiums or benefits affect your tax picture? Separating expenses and emotions.
• Nolo online law center (provides legal assistance in preparing documents for elder care)
• Social Security cash benefit programs for people with disabilities and parents of children with disabilities
• Supplemental needs trusts and planning for disabled children (ElderLawAnswers)
End of life decision-making in the critical care unit• End of life decision-making in the critical care unit. "For several months, Globe reporter Lisa Priest and photographer Moe Doiron documented the journeys of four patients, each hooked to a ventilator, each grappling with a debilitating illness or condition. Their stories, while deeply personal, underline the scope of the challenges facing our strained health-care system: challenges that are medical, ethical, and even economic. How much treatment is too much treatment? How and where do we draw the line? And how do we distinguish between what we can do, and what we should do?" Stories from, and related to, the Canadian series from the Globe & Mail:• Critical care: Spending 10 weeks with patients facing death (Lisa Priest, Globe and Mail 11-26-11) • Why are we afraid of talking about death? (Erin Anderssen 11-27-11) • Navigating life and death in 21st-century critical care (Globe & Mail). Watch video of four patients. • Government lawyer draws line between euthanasia and war (Marc Hume, Vancouver, Globe and Mail, 12-8-11). Read the comments, too. • A B.C. family's secret: How they helped their parents die • ‘Good death’ in Swiss clinic held up as model (Mark Hume, 12-7-11) • Tale of death that took ‘painful eternity’ opens right-to-die case (11-14-11) • Court hears details of woman’s suffering with ALS in right-to-die case (Mark Hume 11-14-11) • Government lawyer draws line between euthanasia and war • Right-to-die laws don’t lead to rise in assisted deaths, experts say (Mark Hume 12-5-11) • The end of life: a just and reasonable accommodation (Gary Mason, 9-9-10) • By the numbers: The costs and counts in critical care (11-25-11) • When it’s time to die: Home is where the heart is OTHER TAKES ON THE SUBJECT: • Still Life (Susan Okie, WaPo, 8-10-14) From defibrillators to suspended animation, it is getting easier for us to cheat death. But should we? Okie reviews David Casarett's interesting book Shocked: Adventures in Bringing Back the Recently Dead by David Casarett |