JustCare

Category: Long-term care

  • Critical home care is no longer affordable for most people and too often not available

    Critical home care is no longer affordable for most people and too often not available

    Caring for an older person with multiple needs can take a toll physically, emotionally and financially. Reed Abelson reports for The New York Times on how reliable home care is hard to come by and not affordable over the long-term.

    Frank Lee, the husband of one woman with dementia, was tending to his wife morning, noon and night. He ended up putting her in a respite program at an assisted living facility so he could take a short break. While he was away, she fractured her sacrum. Mr. Lee was at a loss to find home health aides he could trust, the plight of many older couples.

    Eight million older adults suffer from dementia or need help with at least two activities of daily living, such as bathing and toileting. Only a small fraction of them–one million–have paid help outside a nursing home. Three million have no help.

    Our federal government does little to help people who need home health aides. Medicare only covers very limited home health health care and, then, only for people who are homebound and who need skilled nursing on an intermittent basis or skilled therapy. People with dementia don’t usually fit these criteria. If you don’t have Medicaid, you are generally out of luck in terms of government assistance and, even with Medicaid, there are often waitlists for home care.

    Most older adults are cared for by family, not professionals. They cannot afford $27 an hour, the going rate for a home care aide. Paying for fulltime home care usually means expenses of tens of thousands of dollars a year. Usually it is the older adult’s spouse or daughter  who takes on the role of caregiver.

    People who can afford to pay for a caregiver often cannot find one with the skills to take care of their loved ones. They are often forced to hire untrained caregivers. Paid caregivers in the US rarely earn a living wage; they often can’t count on fulltime work. And, they tend not to get health insurance benefits. It’s no wonder that there is a shortage of paid caregivers; they can get better jobs for the money.

    What to do? Plan ahead. Talk to your loved ones about likely long-term care needs. Even if you have limited resources, it is better to be prepared. Most people do not have these conversations. Families are often unprepared. Many families cannot save enough to offset the cost of long-term care. But, if you plan ahead, you could qualify for Medicaid.

    Keep in mind that long-term care needs can be extensive. Sometimes, two people are needed just to move someone from one place to another. Without assistance, simple tasks become huge burdens.

    Mr. Lee wonders “What’s the end game look like?” Is it right that he should watch his wife, who is already severely demented and unable to take care of herself or speak, deteriorate further? “As she disintegrates, I disintegrate.” When people are terminally ill–six months or less of life–Medicare covers hospice care, which covers some home care. But, good luck getting it if you’re in a Medicare Advantage plan. And, even in traditional Medicare, finding an agency that will provide hospice care can sometimes be challenging.

    Here’s more from Just Care:
  • Planning for long-term care; you’re more than likely to need it

    Planning for long-term care; you’re more than likely to need it

    Howard Gleckman reports for Forbes on why everyone 65 and older should expect to need long-term care. Most people do. And, there’s no way to know in advance whether you will or not. Here’s what you need to know to plan for long-term care.

    What proportion of older adults need long-term care? More than 60 percent of people need moderate or significant amounts of long-term care. Only one in five older adults do not need any long-term care. People between 65 and 70 who say they are in very good or excellent health are less likely to need it. About 30 percent of them will not need it.

    Will you need to pay for long-term care? About half of people over 65 will pay for some long-term care. Others depend entirely on family and friends.

    How long might you need long-term care? Overall, older adults need significant long-term care for an average of three years. But, if you need long-term care, you will typically need it for five years. More than one in five people need it for more than five years. That said, lots of people need it for less than a year.

    What types of care do people need? Typically people need help with activities of daily living, such as bathing, toileting and eating, for four years. And, many people need these supports for way more than four years.

    What will long-term care cost? The average cost is $140,000. And nearly one in five people will spend more than $250,000. But, half of people pay nothing.

    How much savings does a couple a need to cover health care costs? Fidelity estimates that, in addition to Medicare, a couple at 65 needs $300,000 in savings to cover medical bills in retirement. Wealthier, better educated older adults are less likely to need serious care and will need to spend less on care, on average.

    Is it worth buying long-term care insurance? It’s almost always better to set aside money to cover long-term care than to buy insurance. What the companies call level premiums tend to rise significantly over time, so a large portion of people who buy this insurance end up dropping it after paying in a bunch of money. Moreover, those who have it too often find that it does not cover a significant part of their costs. Insurance generally does not kick in for several months, which means you pay out of pocket for your care during that time. And, it generally has a cap, leaving you to pay for a big chunk of the costs.

    Here’s more from Just Care:

  • PACE helps older adults stay in their community

    PACE helps older adults stay in their community

    The Program of All-inclusive Care for the Elderly (PACE) is a home and community-based program designed to keep older adults who are at risk for nursing home placement living in their community.  PACE is a partnership between a local sponsoring organization, and Medicare and Medicaid health insurance programs. To become a PACE “participant,” a person must be nursing home eligible. While a person can pay privately for services, most participants have Medicare, Medicaid, or both insurance programs.

    The PACE philosophy: PACE members are called “participants” because they are encouraged to participate in their care–decision making and active care–whenever possible.  The overarching goal of the PACE Model of Care is to keep people living in the community and out of institutional care.  While an individual does not need to visit the PACE Center, which offers adult day programs with wrap around health services, it promotes socialization and addresses common problems of isolation, loneliness, and boredom.

    Who can get PACE? Programs of All-Inclusive Care for the Elderly (PACE®) serve individuals who are age 55 or older, certified by their state to need nursing home care, able to live safely in the community at the time of enrollment and live in a PACE service area.

    How does PACE work? PACE works by providing care and services in the home, the community, and at the PACE center. It is team-based care that provides everything covered by Medicare and Medicaid if authorized by your health care team.  If your health care team decided you need care and services that Medicare and Medicaid doesn’t cover, PACE may still cover them.  The team provides comprehensive coordinated care and includes the PACE participant, physician, nurse, social worker, recreational specialist, rehabilitation specialists, and transportation specialists.

    Services: Delivering all needed medical and supportive services, a PACE program is able to provide the entire continuum of care and services to older adults with chronic care needs while maintaining their independence in their home for as long as possible. Services include the following:

    • adult day health care that offers nursing; physical, occupational and speech/language therapies; recreational therapies; meals; nutritional counseling; social work and personal care;
    • medical care provided by a PACE physician familiar with the history, needs and preferences of each participant;
    • home health care and personal care;
    • all necessary prescription and over-the-counter medications;
    • medical specialties, such as audiology, dentistry, optometry, and podiatry and speech therapy;
    • respite care; and
    • hospital and nursing home care when necessary.

    See more at: http://www.npaonline.org/policy-advocacy/value-pace#services

    Find a PACE program near you: Currently, there are 144 PACE organizations in 30 states serving 58,000 people. To find out if you or a loved one is eligible, and if there is a PACE program near you, visit www.pace4you.org or www.Medicaid.gov, or call your Medicaid office.

    Beware of for-profit PACE programs: Government audits find for-profit PACE program neglects patients, delays needed care and cancels critical care.

    Learn what to do to ensure safety at home for people aging in their communities. And, see how one new program is helping older adults remain at home with assistance from a handyman, occupational therapist and nurse. For those who like technology solutions, check out how sensors can offer peace of mind to caregivers.

    _________________________

    This post was originally published on March 2, 2016

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  • Caregiving has become increasingly common, challenging and costly

    Caregiving has become increasingly common, challenging and costly

    We are an aging population. And, caring for older adults is costly. Not surprisingly, family caregiving is becoming increasingly common and challenging. It is unreasonable to assume that most older Americans have family and friends who will be able to care for them when they are unable to care for themselves and still make ends meet. Congress should step in to put in place systems and protections that ensure older adults get the care they need without overburdening family and friends.

    Anne Helen Petersen reports for Vox that nearly 42 million people in the US are volunteer caregivers for adults over 50. They represent almost 17 percent of the population. Many of these caregivers are so stretched that they are hard-pressed to make ends meet.

    Nearly three in ten (28 percent) caregivers are unable to save money. More than one in five caregivers are assuming more debt and/or have no short-term savings. More than one in ten of them cannot pay for essentials such as rent and food.

    More than one in four caregivers are young, either millennials or Gen Z. Increasingly, they provide care in their homes.

    The workload for caregivers has grown in just ten years in part because people are living longer. Caregiving involves cooking and cleaning as well as medication management, bathing and providing transportation. Only three in ten caregivers pay others to help with caregiving.

    Caregiving takes a huge toll on people’s mental and physical health as well as finances. And, there’s no system in place to help caregivers. Most people don’t even think of themselves as caregivers. They think of their work as helping out their loved ones.

    Family caregivers are effectively invisible, which makes their situation all the harder. They often step in to help because they see themselves as having no choice. AARP believes more than half of them find themselves in that situation. Paid caregiving is unaffordable. Caregiver coordination is also taxing.

    What is to be done? One elder care expert believes that the federal government should at the very least manage a web site that details caregiver resources by state and community. More money should be available for Area Agencies on Aging, as well. These “Triple As” provide resources to older adults.

    What is really needed is a comprehensive federal long-term care program. The budget reconciliation bill allocates money for community and home-based services for people with Medicaid but not for people with Medicare. That is a beginning, but not enough.

    We also need to improve nursing home care and pay caregivers better wages and benefits for the work they perform.

    Here’s more from Just Care:

  • Government-administered long-term care insurance is long overdue

    Government-administered long-term care insurance is long overdue

    Since the start of the novel coronavirus pandemic, more than 46,000 people have died in nursing homes.  The private health care market is failing, and government-administered long-term care insurance, ensuring government oversight, is long overdue.

    Alexander Sammon makes the case in the American Prospect that the private long-term care insurance market has failed Americans more than any other piece of the health insurance market. Long-term care is the term used to describe an array services and assistance provided to older adults and people with disabilities. It includes help with activities of daily living such as bathing, feeding and toiletting, as well as nursing and therapy services.

    For sure, the number of deaths of older adults in long-term care facilities are easy to track and horrifying. Though, without good data and knowing that out-of-pocket costs keep people with complex conditions from getting medical and hospital care, it is not at all clear that the number of deaths of working people with serious illnesses and injuries stemming from their private health insurance is not equally chilling.

    What the long-term care story reveals is how a for-profit health care market endangers people’s lives by putting profits first and cannot be relied upon to guarantee our health. More than one in ten long-term care residents are no longer with us, in large part because long-term care facilities were not prepared to care for them.

    At some point in your life, there is a good chance that you will need long-term care. Seven in ten people 65 and older require long-term care. Most people rely on family and friends or Medicaid for long-term care. Only about three percent of Americans have long-term care insurance; it is expensive, often not available to people with pre-existing conditions, and generally not worth the cost, delivering little bang for your buck.

    Because the cost of long-term care is so high, private insurers are hard-pressed to profit from selling coverage and the market has shrunk considerably.

    When it was being drafted, the Affordable Care Act included government coverage for long-term care. But, it was designed as a voluntary program with high costs. And, it would not have paid for itself. So, it was dropped from the law before enactment.

    Sammon reports that Americans do not appreciate how likely it is that they will need long-term care. And, many also do not know that Medicare only covers a limited set of long-term care services: up to 100 days of care in a skilled nursing facility if certain qualifying criteria are met, some home care for people for whom leaving home is extraordinarily difficult and who need skilled nursing or therapy services, and durable medical equipment.

    The cost of long-term care keeps rising. It costs seven times more in 2015 ($225 billion) than it did in 2000 ($30 billion). The private market is not up to the task of providing good coverage.

    There are smart ways to provide everyone long-term care coverage through social insurance. Washington state enacted a social insurance program, imposing a small payroll tax on workers’ salaries. It will pay out $100 a day for up to a year of in-home care. Hawaii did something similar. It’s time that the federal government stepped in and offered similar or better coverage to everyone in the nation through social insurance.

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  • Coronavirus: What happened at a nursing home in Washington

    Coronavirus: What happened at a nursing home in Washington

    Katie Engelhart reports for California Sunday on what happened at Life Care Center of Kirkland, the first COVID-19 hot spot in America and, more generally, the role of the nursing home industry in spreading the novel coronavirus. Was Life Care Centers of America, a large nursing home chain, to blame for the many deaths in this facility?

    In a matter of a few weeks, 74 of the 121 residents at the Life Care Center of Kirkland nursing home–more than 60 percent of the residents–were no longer living there. Twenty-six had died. Another 26 had COVID-19. And, 66 staff members showed symptoms, but more than eight in ten of them had not been tested. The county could not provide the necessary testing. Over time, 81 residents tested positive for COVID-19,  along with 50 staff and visitors, and 46 people died.

    By mid-February, staff at the Life Care facility were aware of the growing number of people with respiratory infections. They thought it was the flu. But, they did not report the outbreak immediately as required by law. County health officials should have been notified within 24 hours; instead staff at Life Care waited 15 days.

    Staff did not even discuss the respiratory outbreak when they first noticed it at their quality assurance meeting. The medical director was not at the meeting. Rather, staff went ahead and held a Mardi Gras party. It was 17 days before the facility went into lockdown.

    During the second half of February, Life Care Center of Kirkland did not have the personal protective equipment it needed to protect staff and residents and control the spread of the virus. It was losing staff. It had an emergency response protocol required by law, but the protocol applied to hurricanes, not to pandemics and other medical emergencies. And, Washington state health officials would not allow Life Care to bring in staff from out of state without first going through a lengthy application process.

    Life Care appealed to nurses in its Washington State facilities to help out. It asked the county health department for COVID-19 tests, but it said it had no tests. Life Care’s medical director, the only doctor on staff, had come down with COVID-19 symptoms and was in quarantine. Life Care had no back up plan for another doctor. Since he was the doctor for 90 percent of the residents, they were without a physician to care for them.

    A week after the facility was in lockdown, the state provided just 40 COVID tests for the 90 residents. There were none available for staff. Through the US Department of Health and Human Services, a federal “strike team” of military doctors and nurses arrived eight days after lockdown. They had no long-term care experience and no experience caring for older adults. They also were not interested in learning from staff about what they were seeing in terms of how the virus was spreading.

    The daughter of one resident who died filed a wrongful-death suit against Life Care. By that time Life Care had been fined $611,325 dollars based on evidence of “serious deficiencies” in its response to the pandemic. Federal regulators said that Life Care had placed residents in “immediate jeopardy.” Under pressure from the nursing home industry, many states have given nursing homes immunity protection from lawsuits. Washington has not yet decided whether it will.

    Life Care, the largest private long-term care corporation in the country, is steadfastly unapologetic for the tragedies at Kirkland. It believes it has no responsibility for the death of so many of its residents and staff. (Note that Life Care Center of Kirkland had a five-star rating from Medicare. But Medicare’s star-rating system for nursing homes is a farce. A lot of the data factored into the ratings is self-reported. It should not be trusted.)

    County health officials also take no responsibility. They appear to believe that the county had no responsibility for helping a private nursing home. For its part, the CDC came to the facility simply to assess the situation and provide technical guidance. It said its role was not to provide assistance. The state’s disaster response team did not step in until five days after lockdown.

    The nursing home industry is now a $100 billion business. About seven in ten are for-profit. They have not managed the pandemic well. Nearly 46,000 residents have died, representing more than one in four COVID-deaths. And, 177,129 nursing-home residents have tested positive for COVID-19. They have actively fought regulatory protections locally and in Washington DC.

    There is a history of serious issues with the for-profit nursing homes, including fraud, understaffing and poor infection control. Life Care, along with the other four largest nursing-home chains have been charged with major wrongdoing in the past. In 2016, Life Care settled charges of Medicare fraud–billing for rehab services patients should not have been getting, among other things. The other largest nursing-home chains have also been charged with Medicare fraud. Two settled false claims charges. Those that settled paid tens of millions of dollars.

    Meanwhile, the Trump Administration, relaxed infection-prevention measures and other regulations on nursing homes in 2019, saying they were “unnecessary, obsolete, or excessively burdensome.”

    Here’s more from Just Care:

  • Coronavirus is making it harder to get long-term care

    Coronavirus is making it harder to get long-term care

    The financial and emotional toll of caring for older adults has always been enormous. The novel coronavirus pandemic is making it still harder for caregivers attending to older adults living at home and, even more so, in nursing homes. Bob Herman reports for Axios on why long-term care has become an even bigger issue with COVID-19.

    The data show that older adults are most at risk of becoming gravely ill or dying if they get the novel coronavirus. Many nursing homes and other long-term care facilities have been hard-pressed to contain the spread of the virus. The particular vulnerability of older adults if they get COVID-19 means added stress for them and the people who care for them.

    The question becomes how to ensure older adults receive long-term care safely and affordably. Assisted living facilities and other group homes for older adults tend to cost a minimum of $4,000 a month. Medicare and private health insurance almost never covers their cost. Long-term care insurance will usually cover the cost, but it tends to be a bad investment.

    Medicaid often covers the cost of nursing home coverage for people with low incomes and limited assets. In order for Medicaid to pay, people with more savings need to spend them. Depending upon the state you live in, your income may need to be very low. Also, many nursing homes are not safe and deliver poor quality care.

    When choosing a nursing home, check out Nursing Home Inspect. Do not rely on Medicare’s Nursing Home Compare; it’s star-rating system is a farce. Kaiser Health News reports on how poorly many nursing homes do at controlling the spread of infections.

    Increasingly, people opt for home care as a safer alternative. Over the last several years, more older adults are choosing to age in place, remaining in their homes and hiring home health aides or having friends and loved ones care for them.

    But, aging in place can be enormously costly unless family or friend caregivers are able to help when needed. It also can be difficult to keep a paid caregiver. Wages tend to be low and turnover rates are high. And, in this time of COVID-19, having caregivers coming and going from the home of a loved one has its own set of risks.

    If you are thinking of moving into an assisted living facility or other care facility, now is a hard time to consider your options. In person tours are limited at best. Virtual tours do not provide a 360 degree view of the facility. Unfortunately, it might still be several months before these facilities reopen.

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  • Will nursing homes and assisted living facilities be able to keep the coronavirus from spreading to their residents?

    Will nursing homes and assisted living facilities be able to keep the coronavirus from spreading to their residents?

    Jordan Rau reports for Kaiser Health News that for quite some time nursing homes have not been following basic protocols to contain the spread of viruses and bacteria. The situation has only gotten worse since 2017. And, because assisted living facilities are not subject to government health inspection, we have no clue how well they do in containing the spread of viruses and bacteria.

    Kaiser Health News found that more than six in ten nursing homes–9,372 nursing homes–have received citations from government inspectors for deficiencies in controlling infections. Those nursing homes with fewer staff had a greater likelihood of receiving a citation. It’s another reason to avoid chain nursing homes, which tend to have fewer staff.

    When choosing a nursing home, bear in mind that the government’s star-rating system tells you very little about the quality of a nursing home. Forty percent of five-star nursing homes have been cited for infection-control deficiencies. Five people at Life Care Center of Kirkland, Washington, which has a five-star rating, have died of the coronavirus.

    Facilities that have been cited for deficiencies often have workers who do not wash their hands each time they see a patient or do not wear masks or gloves when they are with contagious patients. These deficiencies can cause infections  to spread.

    Health inspectors treat these deficiencies as minor in almost all instances, so nursing-facilities have no incentive to change their practices. Only in 109 out of 13,000 citations were these deficiencies treated as serious threats to patients. Nursing homes with these deficiencies are generally not fined or penalized in terms of their star ratings. But, between the flu and MRSA or other antibiotic resistant bacteria, each year nursing homes have as many as 3.8 million infections which kill about 388,000 residents.

    In some instances, staff who are sick do not stay home and infect other staff and nursing home residents. And, when staff stay home, it can sometimes be difficult for nursing homes to find replacement staff. There is a shortage of health care workers across the US.

    As of 2016, the Centers for Medicare and Medicaid Services requires an infection preventionist–an employee in charge of infection control–to undertake training and work part-time or full-time in every nursing home. But, the Trump administration has proposed to do away with this on-site staff person. It wants the preventionist simply to spend “sufficient time” at a nursing home to oversee infection-control initiatives, whatever that means.

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  • Free local resources to help older adults

    Free local resources to help older adults

    If you’re looking for free local resources to help older adults, your local Area Agency on Aging is a great place to begin. Area Agencies on Aging (AAAs) develop, coordinate and deliver aging services throughout the country. They serve people over 60 at every income level. In fact, they help more than eight million people a year with long-term care choices, transportation options, benefits information and caregiver issues. You can find them in almost every community.

    Most Area Agencies on Aging are also Aging and Disability Resource Centers (ADRCs). ADRCs provide a hub for information on long-term services and supports to help older adults, their caregivers and families; they work to ensure that older adults are better able to live alone in their homes for as long as possible. They are government agencies that work to meet people’s long-term care needs.

    To contact your local Area Agency on Aging for free local resources for older adults or simply to understand available benefits, call the Eldercare Locator 800.677.1116. The Eldercare Locator is a program of the Administration on Community Living. You can also visit the website at www.eldercare.gov.

    LeadingAge, an association of 6,000 community-based non-profit organizations in the U.S., offers another great resource. It has developed on online tool to help you locate non-profit agencies, agencies that “put people before profits,” that provide services and living facilities for older adults.

    By entering a zip code or city, LeadingAge’s Aging Services Directory will let you know about non-profit resources in the community. You can choose from a list of 18 resources, including nursing, transportation, home-delivered meals and dementia care. You can also learn about retirement communities, assisted living, and subsidized housing.

    And, if you need help navigating Medicare, you should contact your State Health Insurance Assistance Program or SHIP.  For the number of the SHIP in your area, click here. Or, for free help, call the Medicare Rights Center national hotline at 800-333-4114.  For other free and low-cost services for older adults, check out Just Care’s Get Help page.

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  • Evidence suggests privatized Medicaid long-term care may put people at serious risk

    Evidence suggests privatized Medicaid long-term care may put people at serious risk

    The US health insurance system has become increasingly privatized. One big trend is in the Medicaid program. More than two dozen states have contracted with for-profit health insurance companies to deliver home and community-based services to people with Medicaid, crowding out mission-driven non-profit providers. The available evidence suggests that privatized Medicaid long-term care may put people at serious risk.

    Researchers at the Claude Pepper Center express concern both for people with Medicaid and for taxpayers. These large commercial insurers need to drive profits. And, in the health care space, they can do so relatively easily by delaying and denying people needed care. What’s happening to health care access, quality and costs for people with Medicaid needing long-term services and supports in states that have moved to for-profit Medicaid long-term care?

    Today, more than 1.7 million people with Medicaid are in managed long-term care (MLTC) programs operated by for-profit companies or private equity firms. There is precious little evidence to suggest that these programs are more efficient or deliver better care than the non-profits which had been delivering LTC services. There is simply a mindset among some policymakers that for-profit competition is the better model.

    What do we know? AARP has assessed states with the best LTC programs for people with Medicaid. And, the states which rely most heavily on for-profit long-term care (MLTC) rank at the bottom. Two studies conducted in Texas, which has extremely high MLTC enrollment, found poor quality and a system in need of major intervention. Access to network doctors was inadequate. And, the state has little if any ability to monitor or assess performance by the for-profit insurers.

    The federal government, in partnership with powerful corporations who wield undue influence in Congress and in the states, has pushed this move away from the non-profit model of LTC and towards the for-profit model. The GAO has investigated and found serious cause for concern and a lack of needed oversight. The Centers for Medicare and Medicaid Services (CMS) is doing little to ensure appropriate oversight.

    According to AARP, Washington, Oregon, Vermont, Minnesota, Arkansas, Wisconsin and Colorado have the best long-term care programs. None are MLTC. These states should resist a move to for-profit managed long-term care.

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