Grandparents raising grandchildren is an age-old practice and continues to be common in today’s society. This article offers helpful advice to these grandparents as they parent their grandchildren in the 21st century to avoid barriers to success for both the grandchild and grandparent within these families.
Grandparent-led households develop for many reasons. Although commendable, the positive and negative factors associated with this arrangement, including the grandparents’ physical and mental health as well as their commitment and loyalty to their families, should be considered.
I interviewed 12 African American grandmothers raising their grandchildren as parents regarding their perceptions of school-based assistance available to support them in meeting the educational needs of their grandchildren. Of the six themes and two subthemes that emerged, barriers to services that were repeatedly mentioned included lack of adequate finances, access to care, transportation, lack of available resources, limited grandparent educational attainment, and technological advances.
As a result of the study’s findings, I have compiled a list of general grandparent caregiver tips which may be useful as they raise their grandchildren. The practice of grandparents raising grandchildren has existed throughout the history of the United States. However, this phenomenon has gained increasing amounts of attention as the number of children raised in these households continues to rise.
Although the tips offered are generic in nature and may be used by any grandparent raising grandchildren, they are based upon information collected as a result of a research study conducted with African American grandmother caregivers within a rural county in North Carolina.
- Be proactive. Meet with agencies and school officials to prepare for the arrival of your grandchildren into your home. Complete as much paperwork as possible to ensure their arrival and new routine occur as seamlessly as possible.
- Network with other grandparents raising their grandchildren. Regular conversations with other grandparents who are also raising their grandchildren can provide a great support as you are able to encourage and give confidence to each other.
- Research. Become familiar with resources in your area. If none are available to meet your family’s needs, advocate for change.
- Form relationships with your grandchildren’s schools. Be an active presence in the schools, volunteering and making sure to attend parent-teacher conferences and other school-based activities whenever possible.
- Regularly attend doctor’s appointments. Make time to ensure your physical and emotional needs are met. Be in touch with your health and feelings. Take time to get adequate amounts of healthy food, rest, and exercise.
- Take a time out. It is normal to feel overwhelmed and anxious at times. Arrange for respite care services from friends, neighbors, or agencies before they are needed. That way, the resources will be available when contacted in the moment.
- Take time for yourself. Frequently indulge in activities that you enjoy. Make time to relax, and participate in fun things that make you smile and bring you happiness.
- Have a sense of humor. Parenting does not come with a handbook, and grandparenting is no different. Laugh often.
- Apply for financial assistance if available. Meet with the local social services agencies and others to apply for financial assistance to help defray childrearing costs.
- Listen to your grandchildren. The adjustments may have been difficult for you, and even more so for your grandchildren. Allow them time and space to talk to you about how they are feeling. Seek help if needed, for your grandchildren and yourself, to cope with these feelings.
- Enjoy the journey. You are to be commended for raising your grandchildren, regardless of the situation. Enjoy small victories and celebrate your and their accomplishments along the way.
Grandparents assume these responsibilities due to varied reasons, including parental incarceration, death, substance abuse, unemployment, parental abandonment, neglect, and HIV/AIDS-related complications. Regardless of how or why grandparents began assuming the caregiver role for their grandchildren, they are in need of specialized resources and assistance.
Although grandparents are commended for taking on this responsibility, their self-care should also be emphasized. Normal chronological development, lack of resources, and being at greater risk of disease are factors which should be considered within this population. Their experiences, passion, and willingness to guide another generation should be utilized and not overlooked.
Social Workers Can Now Learn Medicare Online and Earn Continuing Education Hours
Social workers can now earn continuing education hours while they learn Medicare at their own pace, anytime and anywhere with Medicare Interactive (MI) Pro, an online Medicare curriculum powered by the Medicare Rights Center.
MI Pro provides the information that social workers and health professionals need to become “Medicare smart,” so they can help their clients navigate the Medicare maze. The online curriculum contains information on the rules and regulations regarding Medicare—from Medicare coverage options and coordination of benefits to the appeals process and assistance programs for clients with low incomes.
“For over 25 years, social workers have been turning to Medicare Rights’ helpline counselors for clear and concise information on how to help their clients access the affordable health care that they need,” said Joe Baker, president of the Medicare Rights Center. “Now social workers can enroll in MI Pro and learn—or enhance—their Medicare knowledge at their convenience while fulfilling their continuing education requirements.”
The Medicare Rights Center, a national nonprofit consumer service organization, is the largest and most reliable independent source of Medicare information and assistance in the United States.
Licensed Master Social Workers and Licensed Clinical Social Workers can earn continuing education hours when they successfully complete any of the four MI Pro programs: Medicare Basics; Medicare Coverage Rules; Medicare Appeals and Penalties; and Medicare, Other Insurance, and Assistance Programs. Each MI Pro program is comprised of four to five course modules.
All MI Pro programs are active for one year following registration.
MI Pro courses are nominally priced. Additionally, social workers who purchase all four programs at once will receive an automatic 20 percent discount.
Medicare Rights Center is a national, nonprofit consumer service organization that works to ensure access to affordable health care for older adults and people with disabilities through counseling and advocacy, educational programs, and public policy initiatives.
Available only through the Medicare Rights Center, Medicare Interactive (MI) is a free and independent online reference tool that provides easy-to-understand answers to questions posed by people with Medicare, their families and caregivers, and the professionals serving them. Find your Medicare answers at www.medicareinteractive.org.
The Critical Role of Caregivers, and What they Need from Us
Caring for loved ones who have aged or become disabled is not a new concept. Many of the services provided in hospitals, clinics and even funeral homes were once provided by families at home. Particularly in communities where traditional cultural beliefs are highly valued, taking care of an aging parent or grandparent is still a responsibility that families (usually women) are expected to take upon themselves. Inner discord can arise when caregivers challenge these traditions which can lead to guilt and in some cases lawsuits.
For example, proceedings from a roundtable hosted by the National Hispanic Council on Aging revealed that caregiver stigma is prevalent among Latinos, which can prevent them from seeking support and resources. Without help, the risk for burnout increases.
Results from a 2015 study by the National Alliance for Family Caregiving and AARP revealed that “an estimated 43.5 million adults in the United States have provided unpaid care to an adult or a child in the prior 12 months”. This number is likely to increase in the coming years due, in part, to an aging population.
Family caregivers perform a variety of services, including helping with ADLs, dispensing medications, managing finances, attending doctor appointments and advocating. Many do so while maintaining full-time employment outside of the home.
Respite is Essential, but lacking
The physical cost of caregiving is staggering, and there are few opportunities for respite. Even when respite is available, caregivers must consider the care recipients’ safety, and their desire to leave home. A person who has a disability or is ill can still make decisions regarding their care. So when they say no to respite care, it can’t be forced upon them. Desperate for a break, some caregivers have gone to extreme measures such as dropping off their loved one at the emergency room for respite. This is a problem that should be addressed in the years to come. But how?
Changes in the workplace
More companies and organizations are beginning to understand that caregiving without support can negatively impact worker productivity. In response, some companies have revisited their policies regarding family leave, allowing flexible work schedules and work from home opportunities. As employers seek new talent, they may find that policies such as these are attractive to job seekers. Two major companies, Deloitte and Microsoft, made headlines after incorporating paid time into their family leave policies. Other companies have adopted similar models.
As the nation grapples with how to provide better support to caregivers, it will need to improve major areas like extending paid leave to family caregivers, creating financial stability for those who need to provide full time care, and providing necessary training and respite to ensure the mental and physical well being for both the caregiver and the recipient. These changes require a shift in how we think about providing care, and changes in policy.
Caregivers are operating on tight schedules and don’t always have time to attend in person support groups. So having the option of connecting with others through online chats and support groups is more convenient for some caregivers. In addition, they could benefit from ongoing training and resources that will help them to more effectively and safely care for their loved one. This past September, the U.S. Senate passed the RAISE Act, which would require the development of a national strategy to address the growing challenges and economic impact of caregiving. The bill must now go before the House of Representatives.
The financial costs of caregiving cannot be ignored, and the average social security beneficiary does not earn enough to shoulder the burden of the financial costs they incur. Most caregivers likely work not only to maintain a sense of identity but also out of necessity.
Caregivers can face stressful decisions when it comes to choosing between work and providing care, particularly when their loved one is seriously or terminally ill. Too often, relatives are not eligible to be a paid for their time. And when they are, the earnings are not enough to make ends meet. Unfortunately, many caregivers often place their loved ones in skilled nursing facilities, simply because they cannot afford to care for them at home.
The question of who should provide care and how they will provide is one that has yet to be answered. While they wait, however, caregivers are facing stress and financial burden with few desirable options for support. And care recipients aren’t getting the care they so desperately need.
AARP Applauds Unanimous Senate Passage of RAISE Family Caregivers Act
AARP applauds the unanimous passage in the U.S. Senate of the bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (S. 1028).
The legislation, introduced by Senators Susan Collins (R-ME) and Tammy Baldwin (D-WI), calls for the development of a strategy to support the nation’s 40 million family caregivers. It would bring together stakeholders from the private and public sectors to recommend actions that communities, providers, government, and others are taking and may take to help make the big responsibilities of caregiving a little bit easier.
It would bring together stakeholders from the private and public sectors to recommend actions that communities, providers, government, and others are taking and may take to help make the big responsibilities of caregiving a little bit easier.
Every day, millions of Americans are caring for parents, spouses, children and adults with disabilities and other loved ones so they can live independently in their homes and communities for as long as possible. They take on a range of tasks including managing medications, helping with bathing and dressing, preparing and feeding meals, arranging transportation, and handling financial and legal matters. The unpaid care family caregivers provide helps delay or prevent costly nursing home care, which is often paid for by Medicaid.
“Family caregivers are the backbone of our care system in America. We need to make it easier for them to coordinate care for their loved ones, get information and resources and take a break so they can rest and recharge,” said AARP Chief Advocacy & Engagement Officer Nancy A. LeaMond. “Thanks to the efforts of long-time champions of the bill Senators Susan Collins and Tammy Baldwin, we are one step closer to helping address the challenges family caregivers face.” AARP is working to bolster bipartisan support for the RAISE Family Caregivers Act in the U.S. House of Representatives.
The bill (H.R. 3759) was introduced by Representatives Gregg Harper (R-MS) and Kathy Castor (D-FL), along with original cosponsors Representatives Michelle Lujan Grisham (D-NM) and Elise Stefanik (R-NY). The RAISE Family Caregivers Act has the support of about 60 national organizations.
For more information and to track this bill visit Congress.gov.
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.
How Republican Plans to Cut Obamacare and Medicaid Hurt Older Americans
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.
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