Ninety-Two Percent of Caregivers Are Financial Caregivers

A Merrill Lynch study, conducted in partnership with Age Wave, finds that the 40 million family caregivers in the U.S. spend $190 billion per year on their adult care recipients. Despite the financial, emotional and functional challenges in this life stage, preserving the dignity of their loved one is their primary goal. The vast majority of caregivers (91 percent) are grateful they could be there to provide care, and 77 percent say they “would gladly do so again.”

“As tens of millions of people take on caregiving responsibilities each year, supporting those caring for our aging population has become one of the most pressing financial issues of our lifetime”

Family caregivers are America’s other social security, providing the bulk of long-term care today. The aging of the baby boomers will result in unprecedented numbers of people in America needing care. As a caregiving crunch is upon us, “The Journey of Caregiving: Honor, Responsibility and Financial Complexity” offers an in-depth look at Americans’ financial and emotional journeys during this life stage. This study marks the beginning of a new, multiyear research series from Merrill Lynch and Age Wave that will examine five distinct life stages: early adulthood, parenting, caregiving, widowhood, and end of life.

As the first of the series, this study examines the responsibilities, sacrifices, and rewards of caregiving – a life stage that nearly all Americans will participate in, as a caregiver, care recipient or both. This study comprehensively explores the topic of financial caregivers – a role largely unexamined, yet held by 92 percent of caregivers. Financial caregiving involves contributing to the costs of care and/or coordinating or managing finances for a care recipient.

The study is based on a nationwide sample of more than 2,200 respondents, including 2,010 caregivers. Key findings about their caregiving journey include: Paying bills from their recipient’s account (65 percent), Monitoring bank accounts (53 percent), Handling insurance claims (47 percent), Filing taxes (41 percent), Managing invested assets (21 percent).

  • Much more than hands-on care. Providing emotional support (98 percent), financial caregiving (92 percent), household support (92 percent) and care coordination (79 percent) far outweigh physical care (64 percent).
  • Financial costs – with little discussion of their ramifications. Seventy-five percent of financial contributors and their care recipients have not discussed the financial impacts of these contributions.
  • Caregiving for a spouse vs. for a parent. A spouse is 3.5 times more likely to be the sole caregiver looking after a care recipient and is more likely to spend more out of pocket on care-related costs. Their caregiving journey is also different in terms of the obligations and financial interdependencies they hold with their loved one.
  • Caregiving gender gap. Both for cultural and biological reasons, women are more commonly caregivers for spouses and parents, averaging six years of caregiving in their lifetime versus four years for men. As a result, women are disproportionately impacted by the challenges of caregiving, including struggling to balance responsibilities and making career sacrifices. And then, more find themselves alone and without someone to care for them when needed.
  • Responsibilities extend beyond the care recipient’s life. Sixty-one percent of the time, caregivers expect their role will end with the death of their loved one. However, the complexities of financial, legal, and other aspects of caregiving often continue for months or even years.

“As tens of millions of people take on caregiving responsibilities each year, supporting those caring for our aging population has become one of the most pressing financial issues of our lifetime,” said Lorna Sabbia, head of Retirement and Personal Wealth Solutions for Bank of America Merrill Lynch. “Greater longevity is going to have a profound impact on the caregiving landscape and calls for earlier, more comprehensive planning and innovative solutions to address the health and long-term care needs of our loved ones.”

Financial caregiving: Navigating complexity and responsibility
The study finds that 92 percent of caregivers are also financial caregivers, and are contributing to and/or coordinating finances for their loved one. In fact, after two years of receiving care, 88 percent of care recipients are no longer managing their finances independently.

Financial caregiving is often far more complex than simply contributing to the recipient’s care. Financial caregivers are responsible for a wide variety of tasks, including:

  • Health care rises as top challenge. Respondents find that navigating health insurance expenses is the top challenge of financial caregiving (57 percent).
  • Uncharted territory. An estimated 49 percent of financial caregivers don’t have the legal authorization to perform their role.
  • Guidance and resources lacking. Sixty-six percent of caregivers feel they could benefit from financial advice.

Costs and compensations of caregiving
While some aspects of caregiving may feel like a burden, those surveyed also tell us it is a blessing. Contrary to all we hear about the stress and sacrifices of caregiving, for many caregivers, the role is also often associated with a range of positive experiences and rewards. Caregivers describe a complex, demanding yet often nourishing journey – defined by honor, gratitude, fulfillment, purpose, and strong family bonds.

Costs:

  • Nearly three quarters of respondents say they’ve made numerous sacrifices as a caregiver – whether familial or professional.
  • Fifty-three percent have made financial sacrifices to compensate for caregiving expenses. Thirty percent of caregivers say that they have had to cut back on expenses, and 21 percent have had to dip into personal savings.
  • Two in five caregivers under the age of 64 have made sacrifices at work due to caregiving responsibilities, including reducing their hours (17 percent) and leaving the workforce (16 percent).

Compensations:

  • Caregivers feel rewarded knowing they are doing something good for someone they love – 61 percent say the greatest benefit of providing care is the sense that they have “done the right thing.”
  • Seventy-seven percent say they would gladly take on being a caregiver for a loved one again.
  • Forty percent report a strengthened bond between themselves and the care recipient, and 24 percent say caregiving brought their family closer together.
  • Eighty-six percent say watching their loved one’s health struggle was a motivator that caused them to place more value on taking care of their own health.

“Caregiving is one of today’s most complex life stages, throughout which hard work, high stress and heavy obligations intertwine with honor, meaning and resilience,” said Ken Dychtwald, Ph.D., CEO and founder of Age Wave. “This experience becomes even more emotionally complex and financially challenging when caring for loved ones suffering from dementia or Alzheimer’s. Even with that added burden, this study reveals that 65 percent say that being a caregiver brought purpose and meaning to their life.”

The crucial role of employers
Employers can play an integral role in supporting caregiving employees during this demanding life stage. While 84 percent of employers say caregiving will become an increasingly important issue in the next five years, only 18 percent strongly agree that their workplace is currently “caregiving-friendly”– underscoring the need for new approaches and solutions across the workforce.

“Meaningful, well-designed employer benefits can make a crucial difference in helping caregivers navigate the high stress of caring for a loved one and help them balance these responsibilities with the rest of their working and financial lives. Just as child care has been an issue in the past that led to revolutionizing HR benefits, the aging of the population means we need to consider how caregiving is becoming an increasingly important issue for employers and employees,” said Kevin Crain, head of Workplace Solutions for Bank of America Merrill Lynch. “These should include resources and programs focused on addressing caregiving complexities and employee networks that facilitate support from experts and peers.”

According to Crain, “Bank of America Corporation is committed to meeting the needs of caregivers in today’s transforming world. Companywide initiatives dedicated to addressing the needs of our country’s aging population and those of their caregivers include combatting elder financial fraud, increased awareness of cognitive decline and Alzheimer’s disease, and implementing caregiving best practices through training and resources for its financial advisors and corporate clients. The company supports our employees who are caregivers through a variety of resources including access to emergency back-up care for adults and children, professional elder care assessments, elder care law services, and an internal Parents and Caregivers employee network.”

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.

Accessible resources

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.

Money

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.

Anxiety in Children: How Can You Help?

Mental health issues amongst children are becoming more and more common, and this is a trend that doesn’t show any signs of slowing down. If you’re a parent or caregiver, it’s a good idea to become familiar with signs of mental ill-health, and think about how you might be able to help.

The first step is to recognize the symptoms. While small experiences of anxiety are a natural part of life, it’s important to recognize when it’s becoming more prevalent, and when it’s having a negative impact on a child. Symptoms might include an irrational and ongoing sense of worry, an inability to relax, general uneasiness and irritability, as well as difficulty sleeping, difficulty concentrating or sudden, unprovoked feelings of panic. Anxiety and depression are not always obvious in children and symptoms can vary significantly depending on the child. Because of this, it’s really important to involve professional medical help if you’re worried about someone in your care.

The second step is to work out if and how to talk about it. Simply letting them know you care can make a big difference. You might like to share a story about times you’ve experienced anxiety. This can be an avenue into a discussion around anxiety, and can provide an opportunity to ask if they have similar worries.

If you’re going to try to help a child with anxiety, there are a few key things to avoid as they can end up being accidentally unhelpful. Avoid phrases like ‘just relax’, or ‘calm down’ as they can escalate the feelings of anxiety and make the child feel like they are doing something wrong. Also consider and be aware of situations that might exacerbate your child’s anxiousness, for example being in loud, crowded places could evoke feelings of uneasiness or panic. It’s important that you can find the balance between understanding and supporting what your child might be going through and acting as a self-assigned counsellor – don’t be afraid to seek professional help if you need to.

The next thing you can think about is how to empower your child to deal with particular triggers. For example, if your child is feeling anxious about a certain event – an exam, public speaking at school, or an upcoming sports game, you may be able to talk with them about whether you can help them to practice or prepare in a way that they might find helpful.

Perhaps practicing a speech in front of you could help them to pinpoint what it is about the experience that’s making them feel anxious. You can’t promise that they’ll ace their presentation or win their sports day, but you can help them practice what they’re concerned about and provide them with tools to manage the anxiety they may feel in these situations. You don’t want to create further anxiety-inducing situations though, so make sure your child is happy to try this out, and mix it up with fun activities too. Revisiting things that they are familiar with and good at can help to develop a sense of capability and foster self-esteem.

When dealing with anxiety, this three-step breathing exercise can be used as a tool to interrupt anxiety as it builds, and it is something you can practice together.

  • Step 1: When you feel tension and anxiety building, stop and close your eyes and take a slow, deep breath in through your nose for 6 seconds.
  • Step 2: Hold it for 2 seconds, then slowly breathe out through your mouth for 4 seconds.
  • Step 3: Repeat this as many times as necessary, gently bringing your focus back to the breath.

If you’re worried about your child, or someone close to you, it’s important to get the advice of a qualified healthcare professional. Anxiety and depression are illnesses that often benefit from a range of treatment options, and often professional support is key to management and recovery.

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.

Tending the Caregivers

Mothers who work as healthcare professionals – physicians, physician assistants and nurse practitioners – can significantly reduce their stress levels and burnout by participating in close supportive groups at work, according to a new study by researchers at Arizona State University and the Mayo Clinic. The shared experiences in these support groups provide a wealth of nurturance for the women.

The study, “Fostering resilience among mothers under stress: ‘Authentic Connections Groups’ for medical professionals,” is published in the current issue of Women’s Health Issues.

Groups in the intervention provided “comfort, solace and advice as needed, building what some called a ‘secret sisterhood’ of shared experiences with genuineness and reciprocity in the relationship,” said Suniya Luthar, a Foundation professor of psychology at ASU and the lead author of the study. “These factors help build resilience for professional mothers who are under great daily stress, with substantial dual demands at work and at home.”

Senior co-author and collaborator on the project was Dr. Cynthia Stonnington, associate professor and chair of psychiatry at the Mayo Clinic College of Medicine, Arizona. Other authors of the paper are Alexandria Curlee, an ASU graduate student; Susannah Tye, Department of Psychiatry and Psychology at the Mayo Clinic, Minnesota; and Judith Engelman, a psychiatrist in private practice.

“Women medical professionals who are mothers often face the dual role of being the primary caregiver both for their patients and their children,” said Stonnington. “This puts them at higher risk for burnout than their male counterparts. Our study investigated how this supportive program might help mitigate stresses and promote their day-to-day health and well-being.”

The Authentic Connections Groups (ACG) intervention involved weekly sessions at work over a three-month period. The researchers randomly assigned 40 women at Mayo to one of two groups: either the 12 weekly one-hour sessions of the ACG’s or 12 weekly hours of protected time to be used as desired. The study was supported by a Seed fund from Arizona State University to Luthar, and the Mayo Clinic contributed release time to participate.

The study had several positive results.

It showed that those who participated in the ACGs had significantly greater reductions in depression and other global symptoms of stress than those given free time (the control group). Secondly, relative gains were still more pronounced three months after the program ended. Follow-up assessments showed significant between-group differences not only on depression and stress, but also on almost all other central variables, including parenting stress, self-compassion, feeling loved and physical affection. Participants in the ACGs also showed more reductions than control moms in cortisol levels (a biochemical indicator of stress) at both post intervention and three months follow up.

In explaining why this program worked, Luthar said that, in essence, the ACGs actively and continually fostered the development of close, mutually supportive relationships, and the resulting shared experiences and bonding helped to lower participants’ stress levels.

“Resilience research clearly shows the critical protective power of reliable close relationships,” Luthar said. “In this program, our focus was on developing and strengthening what we called ‘go-to’ committees for each woman. As topics were shared in the weekly group sessions over time, the moms each also shared them with their respective go-to’s. By the end of three months, each woman had developed great closeness not only with other moms in their work setting but also with at least two or three other women in their personal lives.”

A critical factor in enabling this effort was the institutional commitment to wellness. Stonnington reported that the ACG program was implemented as part of an initiative begun in 2015 at the Mayo Clinic in Arizona to address burnout and turnover among female physicians.

“Another major reason for the success of this program is that the groups were implemented in the women’s everyday settings, during their regular work-days,” said Luthar. “That the Mayo administration gave them the one hour per week free time to participate was a critical consideration, given how very packed these women’s schedules can be.”

The U.S. Surgeon General recently stated that efforts to promote the well being of medical professionals must become a major priority among health care organizations. This study demonstrates that facilitated colleague support groups can provide a viable, low-cost preventive way to mitigate burnout among women medical professionals who are also mothers.

More broadly, the authors note that the ACG program has the potential to be widely used in workplace wellness programs, given the high cost of worker stress and depression in contemporary America. Since completion of the Mayo project, Luthar and colleagues have successfully completed groups with military mothers, and are now offering it to women in the STEM (science, technology, engineering, and mathematics) disciplines, with both new projects implemented at ASU.

“It is our hope that over time, the ACG program will come to benefit women, mothers, and other adults in salient caregiving roles, as they routinely give so much of themselves to others while experiencing high everyday stress,” Luthar said. “It just makes common sense. Those who serve as first-responders, and who offer so much tending for many others, must themselves be tended – with this happening on a reliable and ongoing basis.”

Social Work and Rare Disease Day

by: Emily Walsh and Deona Hooper

In honor of Rare Disease Day, the Mesothelioma Cancer Alliance is working with Social Work Helper to spread awareness about the effect that rare diseases can have on a person and their support system and also what resources are out there to help ease some of the added strain. Rare Disease Day is an awareness campaign that was created by EURORDIS in 2008 that shares information relevant to rare diseases that affect people all over the world.

Though each individual rare disease affects a small percentage of people, 1 in every 10 Americans suffers from such a disease, making it a more prevalent issue than many would think. Why does having a rare condition differ from having a more widely known disease and what resources are there to support those who find themselves in need of help?

David vs. Goliath

When a person receives a diagnosis of a rare condition or form of cancer, such as mesothelioma, it can often be difficult to know where to begin. Doctors can provide guidance, but often those providing the initial diagnosis are not specialists in that particular area. It then falls to the patient to follow through with receiving a second opinion from a specialist, who could be located several hours away in the nearest large city or even in another state.

Once an appointment can be made, the waiting period often leads patients to research their condition online. The internet can be a blessing and a curse when pertaining to medical information. Science based and medically sound websites can provide a wealth of information, but there is also the possibility of finding false information or statistics that may seem alarming. However, there are also support groups that can be found, where patients can discuss their concerns with others who have been in their situation.

Even with support of doctors, family, and friends, receiving a rare disease diagnosis can feel insurmountable, but there are resources available that can help.

How are social workers able to help?

Being diagnosed with a rare disease or chronic health condition can be extremely taxing both physically and mentally. Many hospitals, doctor’s offices, and palliative care centers have social workers on their care teams to connect patients to information, services and resources in order to help them navigate through this difficult time. Social workers are there to help the patient and family identify barriers to treatment and achieve their overall wellness plan.

There are also oncology social workers who specifically specialize in assisting patients with a cancer diagnosis such as mesothelioma. “Oncology social workers provide information on resources, medical and insurance coverage, and how to talk to your family and the children in your lives about cancer,” Penny Damaskos, Director of the Social Work Department at Memorial Sloan Kettering Cancer Center in New York City, said to the American Society of Clinical Oncology.”

Long term care for chronic conditions not only affects the physical and mental health of the patient, but it also impacts the mental wellness of their caregivers. Social Workers provide approximately 60% of all mental health services in the United States, and engaging in individual and/or group therapy should be considered as part of the patient’s holistic wellness plan. Telemental health services maybe also be an option for patients and family members who have financial and/or transportation barriers preventing them from engaging in traditional face to face therapy.

What are some social worker resources for those who have rare diseases?

Knowing where to look for information and resources during a crisis can be overwhelming especially if Google is your only ally. Although a staff social worker is the best access to information, it may take sometime before you are connected.

Social Work Helper has created a mobile app to help individuals and families find highly recommended resources and services in their local area ranging from mental health services, low cost prescription drugs and palliative care services to food banks and other social services. Download here!

Medicaid Waivers Help Parents of Children with Autism Stay in the Workforce

PENNSYLVANIA— Medicaid waivers that improve access to home and community-based services for children with autism also help their parents keep their jobs, according to research from Penn State College of Medicine and collaborators.

Previous research found that families of children with autism spectrum disorder experience more challenges obtaining child care and other services compared to families of children with other special needs. Medicaid waivers that target children with autism spectrum disorder help families obtain expensive services they may not have otherwise been able to afford.

Parents of children with autism are also encouraged to commit significant time to participating in their child’s treatment.

“When you’re spending all that time just trying to help your child, there’s less time for work,” said Douglas L. Leslie, professor of public health sciences and psychiatry, Penn State College of Medicine.

When these two factors are combined, the reality is that one parent often significantly reduces their work hours or stops working altogether, increasing financial stress on families that may already be struggling to pay for costly services.

Leslie’s team, along with collaborators at the Perelman School of Medicine, University of Pennsylvania and the RAND Corporation, set out to determine if Medicaid waivers affected parental employment in families of children with autism. The study appears today (Feb. 6) Health Affairs.

Historically, private health insurers have not covered services for children with autism, Leslie said, putting the onus on school systems. That help can come too late, because research shows that children with autism benefit from interventions that begin before school-age.

“There’s been a lot of policy work over the last decade or so to try and improve insurance coverage for kids with autism,” he said. “One of the main mechanisms they’ve tried to do this through is Medicaid waivers.”

Many states have introduced home and community-based services waivers that expand eligibility for Medicaid-reimbursed services and provide services that are not covered under the standard Medicaid benefit.

“We’ve done some research looking at the effects of these waivers on things like access to care and unmet needs, and we thought it would be useful to see whether they’ve had an impact on parent’s labor market decisions,” Leslie said.

Leslie and his collaborators used information from a nationally representative survey as well as Medicaid waiver data to determine how waivers impacted parental employment from 2005-2006 and 2009-2010.

They found that waivers were effective at allowing parents to remain in the work force. When cost limits and enrollment limits for waivers were raised—giving more families access to more services—the likelihood that a parent had to leave the workforce also decreased.

Characteristics of waivers, such as how much can be spent per child participating in the waiver and how many families can receive services under the waivers, differ from state to state. In the study, the characteristics of a state’s waiver program determined who was helped by that program.

Waiver programs that increased cost limits—making waivers more generous and putting more services into homes—helped the most in lower-income households.

Waiver programs that increased enrollment limits—allowing more families to receive benefits—made the biggest difference in higher-income households that would not otherwise have qualified for Medicaid services.

“Characteristics of the waivers matter,” Leslie said.

He noted that although waivers can help parents of children with autism stay afloat financially, keeping these parents in the workforce goes beyond monetary considerations.

“Caring for a child with autism is difficult,” Leslie said. “Having an outlet through a job can be very beneficial to the parent’s mental wellbeing. It gets them out into the community.”

Leslie hopes his findings will provide more information to policy makers who hold the purse strings for assistance programs such as home and community-based Medicaid waivers.

“The policy landscape with respect to autism services is very much in flux right now, especially with talk of healthcare reform potentially being reversed,” Leslie said. “I think we need as much information out there as we can get about the benefits of some of these programs so that policy makers can be informed about which policies work and how we can ensure that these vulnerable populations can remain protected as we continue to think about healthcare reform.”

Leslie is continuing to research how waivers affect families and children with autism. He is currently investigating whether waivers are effective at getting more children with autism into evidence-based care and if they reduce problematic outcomes, such as hospital admissions and emergency department visits.

Other researchers on this study were Khaled Iskandarani, research data analyst, Diana Velott, senior instructor and Edeanya Agbese, research project manager, Department of Public Health Sciences Penn State College of Medicine; Bradley D. Stein, RAND Corporation in Pittsburgh, Pennsylvania; Andrew W. Dick, RAND Corporation in Boston, Massachusetts; and David S. Mandell, Perelman School of Medicine, University of Pennsylvania.

Elder Abuse in the Twenty-First Century

baby-boomers

In this “silver tsunami” era, elder populations are outnumbering the younger workforce. This creates significant inequity and more than enough opportunity for people to take advantage. Whether financially, neglectfully, emotionally, physically or sexually, seniors in the United States are at a high risk for exploitation.

Seniors can be abused by underpaid and overworked employees. Nursing shortages, along with an explosion of senior populations, lead to less competent care resulting in bedsores, malnutrition, falls, sepsis or other damages from neglect. In addition, economic woes lead to a rise in physical and financial abuse perpetrated by family members, caretakers and even outsiders. Older people are more susceptible in giving of information without asking questions, which makes financial abuse a low-risk, high-reward crime area. Having adequate representation can be a problem as well.

Social Security and other government assistance is typically managed by a person with power of attorney, but occasionally the government will designate someone to perform economic functions. The potential for abuse necessitates records to be very exact and reported regularly. Social security, wills, estate management, retirement portfolios and such accounts are difficult for most clear thinking people. It has been reported that any older person, much less those with dementia, make bad financial decisions.

Trends

Knowledge of elder abuse is not up with the times, decades behind the experts in the field. It’s difficult to even get a report filed. The myriad of potential problems is worsened due to many inappropriate state laws being slow in prosecuting offenses. Institutional Review Boards don’t commonly deal with such cases and there are not many federal regulations. Meanwhile, seniors don’t always have a great memory for testimony to help their cause in getting charges.

It is going to be hard for the courts to catch up with the times. Currently, elder abuse is acknowledged by WHO as a human rights violation with one in ten seniors falling prey to some crime. That ratio becomes one in two concerning people with dementia. As bad as the current populations trends look now, the future looks worse. 85+ is the fastest growing age group in the United States and the 60+ population is expected to double to over 2 billion people by the year 2050.

What to do?

Local district attorneys need tougher laws that focus on stopping predators and ways to enforce those laws. Whether with state or private agencies, seniors need more representation in housing placements or other living transitions and their monetary affairs.

Elders need younger people to show interest. Nursing home staff is going to be more careful with people they know are being checked on. Other relatives that are taking care of a loved one, should be helped out too. Stopping by or ask about older family members shows that someone is cared for, reducing the abuse risk. Importantly, it also breaks the cycle of care and provides everyday caretakers with the knowledge that they could get a break if needed.

The marks of abuse need to be more commonly known and easy to identify. Upwards of 500,000 seniors are victimized, but very few of these cases are ever identified, much less reported and charged. It helps to have advocates who can sense physical harm, negligence, medical malpractice and other atrocities. Physical and sexual abuse are easier to spot than most neglect, so it takes a concerned loved one to spot personality changes or injuries that are inconsistent with the individual.

Mistreatment is more likely to occur to seniors who have experienced past abuse, in part because those people are frequently left in bad situations and never given much help. Senior women are more victimized than men, as are people in poorer health and those with lower incomes. Many other obvious risk factors and tell tale signs exist to make others aware. We need to be more empathetic and better educated.

The onus is on the concerned relatives to care about what facility seniors are placed in. For-profit corporate chain nursing homes often have less than ideal conditions for staff or residents. Relatives should take the time to tour various homes, make observations, and find the right fit. The most important way to combat elder abuse is by being involved. We just can’t put elders into homes and forget about them. It’s not supposed to be a prison for people we can’t help anymore. Nursing homes are expensive places that should be treating residents like royalty. It takes our effort to keep things as they should be.

To facilitate better treatment, we need to listen to both seniors and caregivers. We need to be attuned to what seniors needs and worries are. We need to speak up and file charges when something has happened. One in ten reported cannot be acceptable. If a caregiver is stressed or burned out, we need to make sure they can get the breaks they deserve to provide the best care, just as we must make sure caregivers are getting paid adequately for the grueling work they put in.

As with raising a child, it takes a village to care for our elders. We need to impress upon society in general that it is everyone’s responsibility and how this needs to happen. We are all going to be in this position someday, we should be doing everything we would want others to do for us as we become more helpless.  

Government, Businesses and Organizations Announce $50 Million in Commitments to Support Women And Girls

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WASHINGTON,DC – Ahead of the first-ever United State of Women Summit, the Obama administration, private-sector companies, foundations and organizations are announcing $50 million in commitments, along with new policies, tools and partnerships that will continue to expand opportunity for women and girls. These announcements include a pledge by more than two dozen leading companies to take actions to continue to close the gender pay gap, new resources to empower community college students to negotiate their first salaries, new campaigns to change how our country values caregiving and improve portrayals of women in media, and enhanced global efforts to promote gender quality worldwide.

Each of these new efforts build on the work that President Obama and his administration have done since the day he took office ensure that women and girls have equal rights, treatment and protections.  He’s signed major pieces of legislation like the Lilly Ledbetter Fair Pay Act – the first major bill he signed into law in January of 2009 – and the Affordable Care Act. He’s dramatically expanded fair pay and paid leave protections. And his administration has systematically encouraged cities and states to embrace policies like higher minimum wage and paid leave.

Underpinning these actions, the President has spoken out and driven a conversation‎ about treating women fairly. He convened the first-ever White House Summit focused on working families to help build 21st century workplaces that better support the needs of families and companies. He has pushed for cultural change that gives women the respect they deserve in schools and in workplaces, and joined advocates in dramatically changing our country’s approach to sexual assault on campus and elsewhere. That conversation has spurred changes in cities and states, businesses big and small, and schools from pre-K to college.

To continue this conversation, tomorrow the President and Vice President will participate in the United State of Women Summit to highlight the progress that has been made over the course of this Administration, and discuss public and private sector solutions to the challenges that still lie ahead. The First Lady will join Oprah Winfrey for a conversation aimed to inspire the next generation of women, shedding light on the progress the First Lady and Ms. Winfrey has seen women achieve and to encourage young women to take action so that progress continues for generations to come.

The primary goal of the Summit is to build a roadmap for future policymakers, stakeholders and advocates to continue to expand opportunities for women and girls. The Summit is being convened by the White House Council on Women and Girls, hosted in partnership with the Department of State, the Department of Labor, the Aspen Institute, and Civic Nation, and will bring together leaders across a wide array of public and private sector industries, along with students, advocates, entertainers, and athletes, to explore six issue areas that are critical for women and girls: economic empowerment, violence against women, health and wellness, civic engagement, education and entrepreneurship.

The new commitments, resources and initiatives being unveiled tomorrow will build on the progress we have made over the past seven and a half years – both domestically and internationally – on behalf of women and girls. They include:

Commitments from leading companies to join new White House equal pay pledge

Highlighting the critical role that businesses must play in reducing the national gender pay gap, the White House will announce a new private sector engagement, called the White House Equal Pay Pledge, for companies who share this commitment – many of which are already taking steps on their own. Each company signing this pledge commits to take action within their organizations by conducting an annual company-wide gender pay analysis across occupations, reviewing their hiring and promotion processes, embedding equal pay efforts into broader enterprise-wide equity initiatives, and identifying and promoting other best practices that will help ensure wage fairness for all workers.

As part of this announcement, 28 companies have signed on to the pledge, including Accenture, Airbnb, Amazon, American Airlines, BCG, Buffer, Care.com, CEB, Cisco, Deloitte, the Dow Chemical Company, Expedia, Inc., Gap Inc., Glassdoor, GoDaddy, Jet.com, Johnson & Johnson, L’Oréal USA, PepsiCo, Pinterest, Popcorn Heaven, PwC, Rebecca Minkoff, Salesforce, Slack , Spotify, Staples, and Stella McCartney. Additional companies are invited to join this effort in the coming months.

Modernized protections against gender-based discrimination in the workplace

The Department of Labor will publish a final rule comprehensively updating its sex discrimination guidelines for federal contractors (including subcontractors) for the first time since the 1970s.  The rule newly addresses a variety of sex-based barriers to equal opportunity and fair pay in the workplace, including pay discrimination; sexual harassment; pregnancy-related accommodations; family caregiving discrimination; and discrimination on the basis of gender identity or transgender status.

New collaboration with Harvard Negotiating & Mediation Clinic to expand career readiness resources through making available negotiation training for community college students nationwide

Negotiation training can be critical in helping workers of any age secure a good job, salary and benefits – but many workers, especially women and those newly entering the job market, can face distinct barriers. Tomorrow, the Department of Education and Harvard Law School’s Negotiation and Mediation Clinical Program – as part of their program in negotiation training – are announcing the development of a new toolkit for community college students around the country to equip them with the knowledge and tools that will better prepare them for starting a career and successfully negotiating their first salary. In addition to being available for community college students, the toolkit will be made publicly available later this year – so will be an important readiness resource for all those newly entering the job market.

The Department of Labor will award more than $54 million in grants to give working parents the ability to train for higher wage jobs while addressing barriers faced by those with child care responsibilities.  This will help working parents address key barriers to participating in and successfully completing training for middle-and high-skilled jobs in in-demand fields, as well as help bridge the gap between the workforce development and child care systems.

By leveraging additional public and/or private funding, the grants promote activities that address barriers to accessing training and employment including co-location of training and child care services; increased access through unconventional training delivery times or locations; flexibilities related to scheduling and child care exigencies; and improved access to child care and other related participant supportive services.  This more than doubles the grant awards previously announced as part of the Department’s Strengthening Working Families Initiative grant program.

A New Coalition to Change How We Value Care in the 21st Century

Child and elder care are key to the economic growth of our country and the wellbeing of our families, but too often, we overlook the needs – and vital economic and social contributions – of paid and unpaid caregivers. Today Care.com, Caring Across Generations, and New America are launching the “Who Cares Coalition,” a unique partnership bringing together a corporation, advocacy campaign, and think tank to spearhead a broad-based social change movement redefining the cultural norms, behaviors, business practices, and policies around caregiving in the US.

The “Who Cares Coalition” will reach millions of families and caregivers by uniting the world’s largest online marketplace for family care; the nation’s top advocate for families, caregivers and aging Americans; and the leading, nonpartisan civic enterprise focused on creating new data and policy analysis on caregivers and changing the narrative around care.

New advertiser-led campaign to improve portrayals of women and girls across advertising and media

The Association of National Advertisers (ANA) Alliance for Family Entertainment (AFE) will announce a new initiative called “#SeeHer” to incentivize advertisers, content creators and the media to develop and showcase content that portrays diverse women and girls authentically. The ANA is the largest representative body for the marketing community in the United States, including over 650 member companies with 10,000 brands who collectively spend more than $250 billion in marketing and advertising each year. The AFE is a coalition of ANA members with family-driven brands. With the launch of #SeeHer, the ANA will share toolkits to support the campaign and lay out the roles of partner organizations to ensure success.

New foundation-backed initiative to invest in young women of color

Seven women’s foundations are announcing their commitment to launch a Young Women’s Initiative in 2016, which will invest and catalyze resources to improve equal opportunity and the prosperity of young women, with a focus on young women of color and those experiencing the greatest disparities in outcomes in our communities. The Young Women’s Initiative will be built on cross-sector partnerships, including: government; philanthropies; nonprofits; corporations; and, most importantly, the young women themselves. The foundations announcing this commitment include the Women’s Foundation of Minnesota, California Women’s Foundation, Washington Area Women’s Foundation, Dallas Women’s Foundation, The Women’s Fund of Greater Birmingham, Women’s Foundation for a Greater Memphis and The Women’s Fund of Western Massachusetts. The New York Women’s Foundation previously launched a Young Women’s Initiative in 2015.

Academics and Advocacy Groups Launch a Policy Platform to support Marginalized Girls

The Girls at the Margin Alliance, a group of  more than 150 alliance members, steered by The National Crittenton Foundation, Rights4Girls, the National Women’s Law Center, Georgetown Center on Policy and Inequality and Girls Inc, will launch a policy platform that will propose concrete, actionable recommendations to ensure that marginalized girls and young women are met with system responses that honor their experiences and voices, provide opportunities for them to heal, develop their strengths, overcome challenges, ensure their safety, and support them in building thriving lives. This platform will provide a framework for change for all organizations and individuals dedicated to the potential of girls and young women. The Alliance was created to advance the best interest of girls who are marginalized by their communities, and often by their families and by the systems charged with their care. 

New report and convening on early educator compensation

The Departments of Health and Human Services and Education are releasing a new report on the compensation of the early care and education workforce. The report examines the low – and often poverty level – wages that child care providers and early educators receive, the vast majority of whom are women, the growing demand for high-quality early education to both support working families and foster children’s early brain development, and the key role that early educators and child care providers play in preparing the next generation of girls, and all young children, for success. To organize around solutions that address this issue, the Obama Administration will co-host a convening on June 15th with early childhood stakeholders, in partnership with the National Head Start Association, the National Association for the Education of Young Children, the National Women’s Law Center, and the Service International Employees Union.

Enhanced global efforts to empower women and promote gender equality worldwide

The U.S. Department of State will release a new strategy for women’s economic empowerment across the globe. The strategy will outline four broad policy objectives: promoting women’s equal access to resources and services, promoting women’s equal access to decent work, promoting women’s entrepreneurship, and addressing overarching issues that impede women’s economic participation, such as gender-based violence.  The State Department’s overseas missions and domestic offices and bureaus will use the strategy to guide their efforts to support women’s economic participation and pursue gender integration across their portfolios.

The White House will announce updates to two global strategy cornerstones of the U.S. Government’s commitment to advancing human rights and promoting gender equality worldwide. The updated U.S. Strategy to Prevent and Respond to Gender-Based Violence Globally, jointly led by USAID and the State Department, reflects our growing understanding of gender-based violence, including historic provisions for vulnerable populations, such as lesbian and transgender women. Established in a 2012 Executive Order in order to prioritize U.S. foreign policy and programs to combat gender-based violence worldwide using a whole-of-government, interagency approach, it lays out the tools the U.S. Government is employing to prevent and combat this scourge.  Annually, the State Department and USAID contribute approximately $150 million to support projects all over the world that support women’s and community groups broadly. USAID alone has reached more than five million survivors of GBV with vital, sometimes life-saving services in more than 40 countries worldwide, and has awarded more than $17 million in dedicated incentive funds to support innovative pilot programs, research, and scaled best practices to address GBV in 15 countries. 

Likewise, the newly updated National Action Plan on Women, Peace and Security will provide the framework for U.S. efforts to increase participation of women in peace processes, prevent sexual violence in conflict, empower women to prevent violence, and ensure that women and girls have equal access to relief and recovery resources.

More than $20 million in new commitments to the Let Girls Learn Initiative to support the 62 million girls around the world who are out of school with the opportunity to attain an education: 

CARE is committing to reach three million adolescent girls, by investing $15 million dollars in six countries through its Udaan “Second Chances” school program. Through this new commitment, Second Chances will broaden from India into Afghanistan, Yemen, Pakistan, Bangladesh, Somalia, and Malawi to double its reach. This program provides an intensive, nine month curriculum to help girls who were unable to finish primary school, catch up to their peers. Through Second Chances, some of the world’s most marginalized girls have returned to school and some have even gone on to college. With a 95 percent success rate, CARE plans to broaden this program with the support of ministries of education, corporations, foundations, and local organizations.

Oracle is committing to invest more than $3 million in direct and in-kind funds over the next 12 months to promote and support educational opportunities for adolescent girls around the world. Under this Let Girls Learn commitment, Oracle Academy, Oracle Women’s Leadership (OWL) communities, Oracle’s Diversity & Inclusion program, and Oracle Volunteers will offer more than 65 direct educational events and support conferences, summer computing camps, and codefests for girls, reaching more than 55,000 students around the globe and inspiring them to explore and pursue opportunities in STEM fields.  The Oracle Education Foundation and Oracle Volunteers will teach girls coding, electrical engineering, and project management through four immersive girls-only workshops. Oracle also plans to expand the work of its Oracle Academy program in Egypt by making an additional investment of nearly $1 million in resources and services over the next four years as part of a new partnership with the Ministry of Education in Egypt to expand computer science education for girls in nine newly developed STEM schools. These schools, also supported by USAID, will provide three years of paid secondary education for each girl.

The International Rescue Committee (IRC) is committing to deliver new programs worth $1 million to adolescent girls in the most conflict-affected states in Africa and the Middle East, including programming that addresses how violence impacts girls’ learning and their ability to access education services. Through its education and GIRL SHINE programs, IRC will target the hardest-to-reach adolescent girls with an in-school and out-of-school enhanced package of services, including girl-only safe spaces and discussion groups, life skills and social and emotional skill development curricula, remedial support in math and reading, parent and caregiver support groups, and an interactive visioning program that breaks down barriers, reduces violence, and ensures increased access to education.

The Hershey Company is committing to support projects that will empower and educate adolescent girls through a $250,000 three-year commitment to the Peace Corps’ Let Girls Learn Fund. The Hershey Company has a long history of giving underserved children the resources they need to be successful. Tomorrow, the company will advance this shared social purpose through this new commitment to Peace Corps’ Let Girls Learn Fund.

PayPal is featuring Peace Corps’ Let Girls Learn Fund in its Back to School charitable giving campaign this August as part of an effort to raise awareness and encourage millions of PayPal U.S. users to support Let Girls Learn projects around the world. In addition to encouraging customers in the U.S. to support the Peace Corps’ Let Girls Learn Fund, PayPal will add 1 percent to each donation, ensuring that 101 percent of every gift made by PayPal U.S. users reaches Let Girls Learn projects.

American Airlines, through its Change for Good partnership with UNICEF, commits to expanding support for adolescent girls’ education by working with UNICEF’s “Let Us Learn” initiative. American commits to build upon Let Us Learn’s successes to-date, including awarding more than 4,000 scholarships to girls in Madagascar to help them enroll and stay in school through the lower secondary level, and helping over 8,000 out-of-school adolescent girls enroll in non-formal classes that provide flexible learning opportunities in Nepal.

Just Like My Child Foundation (JLMC) is committing to reach an additional 10,000 vulnerable adolescent girls with their Girl Power Project® in Central Uganda, thereby doubling their current program reach by 2020. An initial investment from the Toni Ko Foundation will launch the JLMC’s $250,000 commitment. The Girl Power Project® was created to empower adolescent girls and to reduce barriers that prevent adolescent girls from completing secondary school. The Girl Power Project® (GPP) “System in a Box” is an evidence¬-based, innovative, targeted, and scalable mentoring program totaling more than 60 hours of training over two years. It addresses the complex needs of vulnerable adolescent girls’ aged 10¬-15, by ensuring that they stay in school and avoid obstacles in the transition to secondary school. The GPP® empowers girls to live healthy lives by avoiding forced child marriage, HIV transmission, early pregnancy, rape and disease.

AOL, a media technology company with a mission to connect consumers and creators, is taking action in support of Let Girls Learn by announcing the Let Girls Build Challenge. The Challenge, powered by Citizen AOL and AOL’s #BUILTBYGIRLS platform, calls for young women to use the power of technology to conceptualize tech-enabled solutions to the problems facing the #62million girls without access to education. The Challenge will conclude with a final “pitch off” to a live audience, as part of the #BUILTBYGIRLS Challenge, which young women with a background in entrepreneurship to fund tech projects built by other girls. Through the Let Girls Build Challenge, AOL and Let Girls Learn will provide the resources, funding, and mentorship needed to empower the leaders of tomorrow to help open the doors to education globally. For more details please go to builtbygirls.com/letgirlsbuild.

New resources to support efforts to combat and prevent violence against women

The Department of Justice, through its Elder Justice Initiative and its Office for Victims of Crime with support from the Office for Access to Justice, and the Corporation for National and Community Service, will announce Elder Justice AmeriCorps, a $2 million grant program to provide legal assistance and support services to victims of elder abuse, neglect and exploitation – the majority of whom are women – and to promote pro bono capacity building in the field. This grant to Equal Justice Works will be the first ever army of new lawyers and paralegals to help victims of those who prey on our nation’s elders.

The Department of Justice, through its Office on Violence on Women (OVW), is investing $3.2 million in new initiatives to prevent domestic violence homicides. This includes $700,000 for the establishment of a new National Resource Center on Domestic Violence and Firearms to improve the criminal justice system’s response to domestic violence homicides involving firearms, as well as a new $900,000 technical assistance grant award to a consortium of organizations that will work closely with OVW to provide enhanced training and technical assistance to implement an effective firearms response at the local, state, and tribal levels. OVW has also entered into a partnership with the National Network for Safe Communities (NNSC) at John Jay College of Criminal Justice to launch the new $1.6 million National Intimate Partner Violence Intervention Initiative (NIPVII). NIPVII will work with three cities, to be selected as part of the demonstration pilot, to replicate a successful strategy for reducing intimate partner violence and homicides. The National Institute of Justice will oversee an evaluation of the initiative through a grant to Yale University. Additionally, OVW will announce the addition of two new cities, Miami, FL and Winnebago County, IL, as replication sites for the Lethality Assessment Program model. This model was included as part of OVW’s Domestic Violence Homicide Prevention Demonstration Initiative, established in 2012

The Department of Justice, through its Office on Violence Against Women, will award nearly $1.2 million to two organizations to help jurisdictions implement the Department of Justice Guidance on Identifying and Preventing Gender Bias in Law Enforcement Response to Sexual Assault and Domestic Violence, which was released by the Attorney General in December 2015. Through training and technical assistance, these grants will develop resources and build the capacity of law enforcement and advocacy organizations to improve responses to domestic and sexual violence victims

Today, the National Institute of Justice (NIJ) will release a special report, Down the Road: Testing Evidence in Sexual Assaults. It highlights findings from NIJ-supported action research projects in Houston and Detroit, where two multidisciplinary teams of criminal justice professionals developed effective strategies to address the large numbers of sexual assault kits that had not been submitted for DNA testing. The report offers key lessons for improving responses to sexual assault based on research findings from Houston and Detroit and discusses NIJ’s forensic and social science research portfolios as they relate to using biological evidence to solve sexual assaults.

The Department of Health and Human Services’ Administration for Children and Families Office on Trafficking in Persons has partnered with the Office on Women’s Health to create a training for healthcare and social service providers offering trauma-informed services to survivors of human trafficking. This will be complemented by a new initiative to collect data to improve understanding of how trafficking survivors interact with the health system and with social service providers, and will begin in August 2016.

The Department of Justice Office for Victims of Crime (OVC) will invest $1.35 million in holistic services for American Indian and Alaska Native victims of sex trafficking in urban settings. Organizations awarded funds through this investment will be supported by Project Beacon, a training and technical assistance project that will help service providers’ work to promote the healing of sex trafficking victims. OVC will support Project Beacon through an additional investment of $450,000.

The Department of Justice Office of Juvenile Justice and Delinquency Prevention, through its National Girls Initiative, will provide an additional $700,000 in funds to support eleven community programs in Iowa, Hawaii, New York, California, Texas, Connecticut, Washington state, and the District of Columbia, that are working with young women and girls at-risk of entering the juvenile justice system. These programs are culturally-responsive, and build on girls’ strengths to empower them to build brighter futures.

The Department of Justice Office of Violence Against Women will release a report summarizing the sustained impact of the Violence against Women Act (VAWA) throughout communities across the country, drawing from conversations with domestic violence, dating violence, sexual assault and stalking service providers from over twenty states and tribes.

Are We Forgetting About The Sandwich Generation?

By Ed Kashi and Julie Winokaur
By Ed Kashi and Julie Winokaur

When working with elderly patients in health care facilities, it is likely that we may forget about the needs of their adult children aka The Sandwich Generation. The sandwich generation is adult children typically between the ages of 30-50 who are caring for their aging parents while taking care of their own family as well.

Taking care of young children while caring for aging parents puts a great deal of stress on the adult children. In my experience working with families in hospice, I’ve noticed some factors that contribute to the stresses of this generation:

  1. Financial Concerns – Older Americans are living off their fixed income such as Social Security, VA pension, and personal savings which may not be enough to pay for certain expenses. Many retirees can not afford to live in assisted living facilities, or private home attendants, and monthly expenses in their current homes. The children often struggle as they have to figure out how to pay for these expenses if their income is limited as well. This issue is very common for funeral expenses since many retirees don’t have life insurance.
  2. Feuding Relatives – Adult children may have a long history of sibling rivalry which can leave an impact on the care of their elderly parents. One child may agree to hospice care while the other beliefs in aggressive treatment. The rivalry can easily be carried into a facility where we, the social workers usually witness the drama.
  3. Lack of Awareness – You will be surprised how many adult children are not aware of health care proxy, advance directives, or how life insurance works. Some assume that their parents’ insurance will cover everything. Many times I had to inform the children that Medicare does not cover long term costs which brings back to #1 on this list.
  4. Bad Timing– Sometimes adult children may wait till the last minute to make handle their parents’ affairs. Reasons for this occurrence may be that they learn about the resources too late, procrastination, denial, or lax in their own time management. I had adult children asking me how they can get a power of attorney for their parents, and the patient is unresponsive, and near death.
  5. Mom and Dad Are Not The Same –  We know our parents from the time we were born. We are not use to seeing our parents getting older and sicker. Many adult children may not be prepared to watch their parents deal with a debilitating condition such as Alzheimer’s Disease. On the other hand, adult children may have their own personal issues about their parents that was unresolved. These changes can bring emotional distress to the children.

When working in hospitals, assisted living facilities, home care agencies, or adult day programs it’s very common to see these issues surface with this generation. However, social workers who work in private practice or other settings might encounter someone who experiences this as well. Unfortunately, we are unable to prevent adults from getting older and prevent the sandwich generation to face this situation.  We can, however, take some steps to reduce the burden and educate this generation at our place of employment. Here are a few things to consider:

  1. Assess All Legal Health Forms –  Many hospital staff is required to ask patients and families about advance directives, and health care proxy. Families should be educated on the advantages of having these forms in place. This can make health care decisions easier for the adult child.
  2. Discuss Available Services –  Be aware of the services in your community which will allow you to share them with your clients. Services include, Medicaid, home care services, senior subsidized housing, and elder law attorneys are some examples of resources for the elderly. It’s very important to be aware of the referral process of these services. For example, filing for food stamps in NYC is entirely different than filing it on Long Island. If we are knowledgeable about the services than the family is well informed of their options.
  3. Review their coping techniques – Caregiving is physically and emotionally stressful. It’s very important that we assess how adult children are coping. Do they have a counselor to who they can speak to? Do they receive support through their place of worship? Are they attending caregiving support groups? What are their personal issues about their parents that they are struggling with? These questions are some of the examples we can ask when assessing their situation.

How social workers intervene depends on the needs of the adult children. In one situation, the child may have all the concrete needs in place but still requires emotional support. On the other hand, there will be another case where the social worker may have to review health care proxy, discuss Medicaid service, and mediate the feuding siblings.

At the end of the day, you could never give too much emotional support to the sandwich generation.

African Americans Speaking Out About Alzheimer’s Disease

This month, we learned that former model and restaurateur B. Smith has been living with Alzheimer’s Disease.  Smith, dubbed the “black Martha Stewart” due to her career paths as a designer, author, and TV host, shared her story about remaining steadfast in fighting the disease, and having the support of her husband and business partner.

Hearing B. Smith’s candidness about the uphill battle of living with Alzheimer’s was empowering, especially since African Americans typically do not share their stories about Alzheimer’s.  Being an advocate and putting a face on what Alzheimer’s “looks like” in the African American community is a powerful testimony for and from Smith; her story validates the experiences of those living with Alzheimer’s, and the caregivers and families who care for their loved ones each and every day.

Alzheimer’s Prevalence

More than 5.2 million Americans live with Alzheimer’s, with over 200,000 being those 65 years and younger.  Of this population, 3.2 million are women and 1.8 million are men; women make up two-thirds of those living with the disease.  It is estimated that by 2050, the number of those with Alzheimer’s will triple from 5 million to 16 million.

Last year, almost 16 million American families and friends provided 17.7 billion hours of unpaid care to those with Alzheimer’s and other dementias.  This unpaid care has the value of $220.2 billion.

When it comes to medical care, Alzheimer’s is the most expensive condition in America.  With the projected tripling of those living with Alzheimer’s, this medical care expense strain will be astronomical.

Concerns Surrounding African Americans & Alzheimer’s

Senior African American couple holding handsAccording to the Alzheimer’s Association, many Americans dismiss the early warning signs of Alzheimer’s, inaccurately believing that what they are experiencing are normal developments in the aging process.  This misunderstanding of the aging process versus Alzheimer’s is especially true for African Americans, who are two times more likely to develop late-onset Alzheimer’s disease, and other dementias, than whites.  Missing the beginning stages of Alzheimer’s greatly disadvantage African Americans, as we are less likely to receive a diagnosis for our condition, which correlates to delayed treatment and planning.

How Alzheimer’s Disease Affects My Family

During the Summer 2008, my beloved Grandmother was diagnosed with the early stages of Alzheimer’s at the age of 78.  She, as well as us, noticed her having difficulty with routine tasks after she had a mild heart attack two years prior.  We decided to tell her general practitioner about our concerns, and he suspected Alzheimer’s, and placed her on a medication regimen to slow down the progression of the disease.  It has now been six years since the diagnosis, and we battle this disease every day.  Grandmother’s memory may not be as lucid as it used to be, but she is firmly holding on to the independence she still has, despite the disease.  Seeing her remain steadfast through it all gives me the strength when it comes to caregiving.

Resources for Those Living with Alzheimer’s Disease, & Caregivers

There are programs and organizations established for those who are impacted by this disease.  In order to overcome the struggles both those living with Alzheimer’s and caregivers endure, you have to educate yourself about the disease, and the supports that exist to help you during this journey.

The Alzheimer’s Association is a well-respected organization that works tirelessly to educate and support individuals and families affected by this disease, and create awareness about the prevalence in America and worldwide.  The Alzheimer’s Association has several resources that may benefit those affected:

African Americans & Alzheimer’s:  http://www.alz.org/africanamerican/

Provides information about warning signs, caregivers testimonies, and brain health, etc., specifically for African Americans and families affected.  

Living with Alzheimer’s:  http://www.alz.org/living_with_alzheimers_4521.asp

I Have Alzheimer’s Disease:  http://www.alz.org/i-have-alz/i-have-alzheimers-dementia.asp

Support Groups for Caregivers:  http://www.alz.org/apps/we_can_help/support_groups.a

2014 The Longest Day:  http://act.alz.org/site/TRfr_id=5860&pg=entry&s_src=alzfooter

2014 The Longest Day, a day observed around the world to honor the strength, passion, and endurance of those living with Alzheimer’s.  The goal is to raise funds and awareness to propel the mission of the Alzheimer’s Association.  The Longest Day is held on June 21, 2014, which is the Summer Solstice (the longest day in the year, and the first day of the summer season).  

Other resources for caregivers of those with Alzheimer’s

Help Guide – Support for Alzheimer’s & Dementia Caregivers:  http://m.helpguide.org/articles/caregiving/alzheimer-dementia-caregiver-support

AlzOnline – Alzheimer’s Caregiver Support Online:  http://alzonline.phhp.ufl.edu

Final Thoughts About Alzheimer’s

Education, medical research, awareness, community support, and acceptance are dire so that we can one day live in a world where Alzheimer’s does not rob us of those we love, and their memory.  I love my Grandmother, and Alzheimer’s will never be able to break the bond we have, no matter what lies ahead for us.

(Featured headline image:  Courtesy of A Place for Mom.)

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