Over the last twelve months, my colleagues and I have spoken at length with close to one hundred Native American seniors across the state of New Mexico about their health care and health insurance. Since November 2016, these seniors have expressed profound apprehension about the future of health care and insurance coverage under President Donald Trump’s administration, both for themselves and for their friends and relatives. As one elderly woman put it, “I have care, but is [Trump] going to take that away from us?”
Most Americans assume that regardless of any changes to the Affordable Care Act (Obamacare), the healthcare needs of seniors will be covered by Medicare, which serves individuals who are 65 years of age or older and who have paid into the Medicare system via payroll taxes. In fact, even if the current Medicare system remains in place, Obamacare repeal will have profoundly harmful effects on older people, especially those under 65 who have low-incomes, live in rural areas, or are in need of long term care or help to stay in their homes. In fact, seniors are among the most likely people to be hurt by plans to replace Obamacare.
How Obamacare Has Benefited Seniors
Seniors age 55 and over make up an increasing part of the U.S. population and their healthcare needs are extensive and complex. The National Council on Aging estimates that 92% of older adults suffer from a chronic illness, such as diabetes or heart disease. Seniors also have high rates of cognitive health problems, including Alzheimer’s and dementia. A growing number of older adults experience mental health and substance use problems. Even as they face such health problems, many seniors have limited incomes and struggle with the costs of housing, food, and health care.
Although Obamacare is often seen as an effort to increase insurance coverage among younger and healthier people, it has also provided numerous benefits to seniors. These benefits are not only endangered by current replacement plans, they appear to be specific targets of Republican proposals. For instance, Obamacare’s prohibition of annual and lifetime limits on insurance coverage – as well as its limits on the ways insurance companies can raise prices for people with preexisting conditions – have made it possible for older adults with a variety of health problems to get affordable insurance and care.
Seniors have also benefitted from Obamacare’s expansion of Medicaid, which extended eligibility to adults at or below 138% of the federal poverty level. According to the Kaiser Family Foundation, more than six million seniors have received new coverage from Medicaid, including older adults under 65, Medicare beneficiaries with low incomes, and seniors who do not qualify for Medicare because they did not pay enough into that program during their working years. This last group includes elderly adults who are homeless or disabled, as well as those who were previously farmers, ranchers, and homemakers.
What is more, Medicaid covers long-term and in-home care services not covered by Medicare. These services allow seniors with serious medical concerns to receive high-quality care, either in a nursing facility or their own homes. In fact, the Kaiser Family Foundation estimates that 6 in 10 nursing home residents are covered by Medicaid.
In addition to extending these critical benefits to seniors, the Medicaid expansion has generated new revenues for providers of healthcare services that many elders need – including mental health and substance addiction services, transportation services, and help to purchase medical equipment needed by adults who wish to remain at home throughout their elder years. These improvements are especially important for seniors in rural areas, where service providers are sparse and patients must travel long distances to find care. As our research in the rural state of New Mexico reveals, healthcare providers report that Obamacare has helped them address the complex health issues faced by aging patients.
Obamacare has also significantly improved Medicare – by ensuring access to no-cost preventive care and screenings and expanding prescription drug coverage. Crucially, Obamacare addresses the previous Medicare gap in prescription drug coverage, where insurance did not pay for drug costs after an individual reached a certain level of costs. Obamacare discounts drug prices for seniors who fall into that coverage gap and aims to close the gap by 2020. Repeal of the law would significantly increase the cost of prescription drugs, disproportionately affecting seniors.
How Republican Plans Will Hurt Seniors Overall
Not only will repealing or reducing core benefits of Obamacare disproportionately hurt seniors, Republican proposals include provisions that will specifically penalize seniors, such as those that would let insurance companies charge older people up to five times more for insurance than younger adults. Families USA estimates that this could put marketplace insurance financially out of reach for 3.3 million people over the age of 55. Proposed caps on lifetime benefits and the elimination of regulations regarding the essential benefits that insurance plans must cover will put seniors at risk of “running out” of coverage as they age or being unable to afford insurance that will actually cover their medical needs.
Whether or not Obamacare is ultimately repealed, cuts to Medicaid – a core part of U.S. health insurance since 1965 — remain likely and will have especially harmful effects on the numerous seniors who rely on the program for long-term care, including the estimated one-third of American seniors who fall below 200% of the federal poverty line. In addition, reductions or caps to federal funding for state Medicaid programs will serve to deepen existing inequities in care for poor, older, and disabled people in the poorest and sickest states.
Better Care for Seniors Helps Everyone
Ultimately, while seniors have specific and complex needs, ensuring their health is important for everyone in all parts of the United States. When older people cannot get health insurance or adequate care, the burdens are often shifted to their adult children and grandchildren. Many seniors also care for their children and grandchildren, many of whom get help from Obamacare’s benefits for all low-income adults and children. Although Obamacare has very real limitations, the prospect of repeal is already plunging seniors into a state of fear and uncertainty. All Americans should join senior citizens in worrying about the drastic downsides for families and communities, especially in rural areas, if current Republican plans become law.
Child Welfare System Increasingly Relying on Relatives to Raise Children Exposed to Trauma
According to a new report by Generations United, grandparents and other relatives who step in to care for children, play an important role in mitigating trauma, which children in the child welfare system experience at starkly higher rates than the general population.
Thirty percent (127,819) of children in foster care are being raised by grandparents or other relatives, a six percent increase since 2008. In the wake of the opioid epidemic, that number is even more dramatic in the states hardest hit by the opioid epidemic like Ohio, which saw a 62 percent increase in the number of children placed with relatives in foster care since 2010. For each child in foster care with a relative, there are 20 children outside of the system with a relative.
More than half of the children in the child welfare system have endured four or more adverse childhood experiences (ACEs), leaving them 12 times more likely to have negative health outcomes – substance use disorders, mental health problems, and engaging in aggressive or risky behaviors – than the general child population.
“Growing up with a childhood full of trauma and abuse, there were very few moments where I felt safe and very few people with whom I felt protected. Being put into my uncle’s care was the best decision that could have ever been made for me,” explained Kindra, whose last name is withheld to protect her privacy. “It wasn’t an easy road by any means, but I have no doubt in that it completely saved my life.”
Compared to those in care with non-relatives, children in foster care with relatives have more stable and safe childhoods and a greater likelihood of having a permanent home. The have better mental and behavioral health, and are more likely to report always feeling loved.
“These relatives are the loving and protective arms for babies, children and youth who’ve experience trauma,” said Donna Butts, executive director of Generations United. “They are caring for children with multiple high-level needs and they should get the support required for the families to thrive.”
Unlike parents or foster parents who plan for months or years to care for a child, grandparents or other relative caregivers usually step into their roles unexpectedly. At a moment’s notice, they are forced to navigate complex systems to help meet the physical and cognitive health challenges of the children who come into their care. Grandfamilies are less likely than foster families to have access to specialized training and support from professionals that have expertise in helping children, who have experienced trauma, heal.
“One thing I know to be true: you can’t love away the effects of trauma from neglect and abuse,” said Jan Wagner, grandparent caregiver, Michigan. “Our children need the same amount of intensive therapy and services as a traditional foster placement and we, as their caregiver desperately need the same to help them heal.”
Among the report’s recommendations:
- Reform federal child welfare financing to provide more trauma-informed support to prevent children from entering or re-entering foster care
- Increase availability of and access to trauma training and supports designed for grandfamilies
- Address barriers to licensing relatives as foster parents
- Ensure grandfamilies not licensed as foster parents can access financial assistance to meet children’s needs
Generations United will release The 2017 State of Grandfamilies in America report Sept. 13 at a reception, from 5:00pm to 7:00pm, in room G-11 of the Dirksen Senate Office Building on Capitol Hill in Washington, DC.
Generations United will honor Senator Susan Collins (Maine) and Senator Bob Casey (Pennsylvania)with its 2017 Grandfamilies Champion Awards at the event.
Stressed Out Caregivers Are Using ER Visits for Respite, Study Finds
Emergency room staff call it a “pop drop” – when a disabled older person comes in for medical attention, but it seems like the person who takes care of them at home is also seeking a break from the demands of caregiving.
It’s been hard to actually study the phenomenon. A new University of Michigan study suggests that tired family caregivers are associated with greater ER visits and higher overall health care costs for the person they care for.
In a paper in the new issue of the Journal of the American Geriatrics Society, the team reports their findings from a study of 3,101 couples over the age of 65, each with one spouse acting as caregiver for their disabled partner.
The researchers looked at the Medicare payments and emergency department visits for the disabled spouses in the six months after the caregiver spouses took standard tests to measure their fatigue, mood, sleep habits, health and happiness.
Even after they took into account many factors, the researchers found that in just those six months, emergency department visits were 23 percent higher among patients whose caregivers had scored high for fatigue or low on their own health status.
Patients with fatigued or sad caregivers also had higher Medicare costs in that same time period: $1,900 more if the caregiver scored high for fatigue, and $1,300 more if the caregiver scored high for sadness, even after all other factors were taken into account.
The cost of unpaid help
“Many of us who work in clinical settings feel that patients with high home caregiving needs, such as dementia, often rely on the medical system as a source of respite for their spouses or other caregivers, because other respite isn’t paid for,” says lead author Claire Ankuda, M.D., M.P.H. “But there hasn’t been a lot of data about it, and only recently has our society been talking about caregivers and potential ways to incentivize and support them as a way of keeping patients living at home.”
Ankuda, who led the study during her time at in the Robert Wood Johnson Clinical Scholars program at U-M’s Institute for Healthcare Policy and Innovation, is now training in palliative care at the Icahn School of Medicine at Mount Sinai.
“Informal caregivers, including spouses, enable older adults with functional disability to stay out of the nursing home and live at home where they’d prefer to be,” says senior author Deborah Levine, M.D., M.P.H., an assistant professor of internal medicine and neurology at U-M.
“We need to do a better job of identifying and supporting caregivers experiencing distress, in order to help caregivers feel better and hopefully improve outcomes in older adults with disability.” Deborah Levine, M.D., M.P.H.
Long-term data gives key insights
The couples in the study were all taking part in the long-term Health and Retirement Study, conducted by the U-M Institute for Social Research on behalf of the National Institutes of Health. Ankuda, Levine and their colleagues probed HRS data because it allowed them to correct for factors that other, short-term studies can’t – such as the baseline level of Medicare costs, demographic differences including income and education, and even whether the couples have adult children living nearby.
The findings add hard new data about the link between caregivers’ own experiences and the amount the Medicare system pays to take care of those the caregivers take care of at home.
Nearly 15 million older adults get help with everyday activities from spouses and other family or friend caregivers. In the new study, the researchers included couples where one spouse got help from the other with activities such as bathing, dressing, walking, getting into or out of bed, shopping, cooking, and taking medications.
Helping with these tasks on a daily basis, without pay or respite, can take a toll on the caregiver’s own health, wellness and mental state – which can lead to burnout. Medicare does not offer payment or formal respite coverage for family or friends who take regular care of older adults – and only covers home care by certified agencies under certain circumstances.
More research & services needed
Ankuda notes that studies on the impact of supporting family caregivers more formally are just beginning to produce results.
Meanwhile, health policy researchers are beginning to suggest that it may make fiscal sense to incentivize home caregiving, to keep seniors from needing more expensive nursing home care.
“I definitely think there are specific services that could help caregivers, if we can identify those people who are highest risk and provide a basic level of support such as an around-the-clock geriatric care call line that could help caregivers feel less isolated and talk to a nurse about whether, for example, to go to the emergency department,” Ankuda says. “This is a high-cost, vulnerable population.”
Formal respite care, peer support groups and other options could also help stave off fatigue and sadness – and the hospital staff who notice “pop drop” practices could help steer caregivers to such options. So could the primary care clinicians who take care of both the disabled spouse and the caregiver.
Because the new study takes into account the level of Medicare spending for the disabled spouse in the six months before their caregiver was interviewed, it may actually underestimate the impact of caregiver fatigue, she notes.
Indeed, before the authors corrected for the full range of factors, they documented that Medicare costs were lower for patients whose spouse-caregivers who reported being happy or rested. They also saw higher costs among patients whose caregivers had higher depression scores on a standard mood questionnaire.
One factor that wasn’t associated with higher costs in the new study was the caregiver’s score on a standard measure of sleep habits. Sleep disruption is harder to quantify in older people, Ankuda notes. But the measurement of fatigue, which can result from both the strain of caregiving and poor sleep, was clearly associated with both higher rates of emergency department visits and higher overall costs.
Low Medicaid Rates Limit Beneficiaries’ Access to Assisted Living Facilities, Quality Care
More than 700,000 elderly and disabled Americans receive health care in residential care communities, such as assisted living facilities. As the population ages, this number will grow.
A new study by RTI International found that low Medicaid payment rates for services in assisted living and similar settings discourage residential care providers from serving Medicaid beneficiaries, which limits their access to community-based residential care.
The study found that some residential care settings limit the number of Medicaid residents they serve or decrease operating expenses in ways that may also reduce quality of care.
“Medicaid payment rates only cover services in residential care settings; they do not cover room and board,” said Michael Lepore, Ph.D., senior health policy and health services researcher at RTI and lead author of the study. “One of the access barriers is the difficulty that Medicaid beneficiaries have paying for room and board in residential care settings because of their low incomes. This situation dissuades residential care providers from serving Medicaid beneficiaries.”
Residential care settings are community-based homes or facilities that offer room, board and care services, the most popular being assisted living. Compared to nursing homes, these settings often are less institutional and are often the preferred setting.
If Medicaid beneficiaries with long-term service and support needs cannot access residential care settings, then nursing homes may be their only option, ultimately costing taxpayers more money because Medicaid payment rates for nursing homes are higher.
The study, published in the Journal of Housing for the Elderly, found barriers that influence Medicaid beneficiaries’ access to state-licensed residential care include Medicaid reimbursement rates for services, the supply of Medicaid-certified residential care settings and beds, and policies that affect room and board costs for Medicaid beneficiaries.
Researchers examined Medicaid policies in all 50 states and the District of Columbia, interviewed subject-matter experts, and conducted four state case studies informed by reviews of state policies and stakeholder interviews.
“States need to ensure their Medicaid rates for residential care services are sufficient to maintain an adequate supply of these settings and beds available to Medicaid beneficiaries, while also safeguarding quality of care and taxpayer resources,” Lepore said. “Higher Medicaid rates may encourage more residential care settings to serve Medicaid beneficiaries, which may help reduce nursing home use by older adults and people with disabilities and potentially reduce Medicaid spending on long-term services and supports.”
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