Tag Archives for Caregiver

It’s Time to Pass RAISE Family Caregivers Act

Published in the Pawtucket Times on September 18, 2017

Editor’s Note: Four months after S. 1028, titled the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, was introduced in the Senate, an updated House companion bill (H.R. 3759) gets dropped into the chamber’s legislative hopper. On September 13, Reps. Gregg Harper (R-MS) and Kathy Castor (D-FL) along with original cosponsors Reps Michelle Lujan Grisham (D-NM) and Elise Stefanik (R-NY) introduced the legislation that calls for the development of a strategy to support family caregivers. It was referred to House Committee on Education and the Workforce. At press time, Rep. David Cicilline (D-RI) will shortly become a cosponsor of H.R. 3759.

On May 3, Sens. Susan Collins (R-ME), the Chairman of Senate Aging Committee, and Tammy Baldwin (D-WI) reintroduced the RAISE Family Caregivers Act, with Sens. Lisa Murkowski (R-AK) Michael Bennet (D-CO) signing on as cosponsors. At press time, there are now 12 cosponsors. Sen. Collins and Baldwin and Reps. Harper and Castor first introduced the family caregiver legislation in July 2015, and it passed the Senate unanimously in December 2015.

Eight days later the Senate Health, Education, Labor and Pensions Committee unanimously passed this legislation by a voice vote later that month and the bipartisan legislation will now be considered by the full Senate.

The Nuts and Bolts

The House bill introduced this week is updated from the Senate version introduced in early May. That Senate version is almost identical to the Senate-passed version from 2015.

The RAISE Family Caregivers Act directs the Secretary of Health and Human Services to develop and update a national strategy to support family caregivers. The legislation would also create a Family Caregiving Advisory Council comprised of relevant Federal agencies and non-federal members, also including family caregivers, older adults with long-term care needs, individuals with disabilities, employers, health and social service providers, advocacy organizations engaged in family caregiving, state and local officials, and others with expertise in family caregiving.

The newly established Advisory Council would be charged with making recommendations to the Secretary. The strategy would be updated to reflect new
developments. The Advisory Council’s initial report would include an initial inventory and assessment of federally funded caregiver efforts that would be incorporated into the initial strategy. The strategy would then identify recommended actions that government, providers, communities, and others could take to support family caregivers.

The activities under the bill would be funded from existing funding appropriated for the Department of Health and Human Services. No new funding is
authorized and it would sunset in five years.

This bipartisan caregiver legislation has been endorsed by over 60 aging and disability organizations, including the AARP, the Alzheimer’s Association, the w Michael J. Fox Foundation and the Arc.

Shouldering Caregiver Burdens

“Every day, more than 40 million ordinary Americans take on the challenge of caring for parents, spouses, children and adults with disabilities, and other loved ones so they can live independently at home and in their communities,” says AARP Chief Advocacy & Engagement Officer Nancy A. LeaMond. “The RAISE Family Caregivers Act is a commonsense, bipartisan step to recognize and support our nation’s family caregivers. AARP appreciates the leadership of Representatives Harper and Castor, and we urge Congress to pass this important piece of legislation,” she notes.

According to LeaMond, the nation’s family caregivers assist loved ones with eating, bathing, dressing, transportation, medical tasks, managing finances, and more. Many do this while working full time and raising families. The unpaid care family caregivers provide—37 billion hours valued at about $470 billion annually—helps delay or prevent more costly care and unnecessary hospitalizations, saving taxpayer dollars.

“Caregiving is, in one way or another, now an inevitable part of everyone’s future,” said AARP Rhode Island State Director Kathleen Connell. “It has been said that if you ask people about caregiving they fall into one of three or more categories: They know a caregiver, they are a caregiver or they will require a caregiver. AARP works hard at the state and federal level to direct resources and support to family caregivers. In Rhode Island, we have fought successfully for temporary caregiver insurance (TCI), the CARE Act, accessory dwelling unit legislation and a new fund to help offset the cost of ‘livable’ home improvements that benefit caregiving and make aging in place easier.”

“In the upcoming special session of the General Assembly, another key caregiving bill will be before lawmakers,” Connell added. “Earned Paid Sick Leave will be especially helpful to working family caregivers whose employers do not offer paid time off. Temporary caregiver insurance requires several days advanced notice. That can be helpful, for example, if a family member has a scheduled test or medical procedure. Earned paid sick leave would allow employees to used paid sick time when they are called away to attend to immediate emergencies.”

“The RAISE Family Caregivers Act is intended to provide a policy framework for improving caregiver support from national level down to states, cities and towns. In short, where the caregiver rubber meets the road,” Connell said.

Caregiver Legislative Proposal a Bipartisan Issue

According to AARP’s Public Policy Institute, there are 40 million family caregivers in the United States who provided an estimated $470 billion in uncompensated long-term care in 2013. In the Ocean State at any time during the year, an estimated 134,000 Rhode Island family caregivers step up to provide 124 million hours of care for an aging parent or loved one, most often helping them to live independently in their own homes.

With many caregivers putting their own health at risk, experiencing experience high-levels of stress and have a greater incidence of chronic conditions like heart disease, cancer, and depression, these individuals need the support and assistance that the enactment of the RAISE Family Caregivers Act could help bring about. Both sides of the aisle must put their political differences aside and push for passage. Both Republicans and Democrats shoulder caregiving duties.

Quickly passing the RAISE Family Caregivers Act in the Senate and House and sending it to the desk of President Donald Trump for his signature is the right thing to do.

Assistance to Employee Caregivers Good for Everyone’s Bottom Line

Published in Woonsocket Call on June 11, 2017

Days ago, AARP and the Respect a Caregiver’s Time Coalition (ReACT) released a report detailing innovative practices and policies of 14 organizations to support their employees with caregiver responsibilities. With the graying of America, supporting caregiver employees should be considered “a potentially new weapon” to attract or retain talented employees, say the researchers, by flexible work arrangements and paid leave policies. And there will be a need for this support.

It is estimated that of the 40 million unpaid family caregivers in the U.S., 60 percent are employed. According to the National Alliance for Caregiving (NAC) and AARP Public Policy Institute, nearly 25 percent of all family caregivers are millennials, and 50 percent are under the age of 50. This means that the growing number of family caregivers in the workforce is an issue that all employers will face. The NAC/AARP research also revealed that 61 percent of working caregivers must make workplace accommodations including modifying hours, taking a leave of absence, choosing early retirement or turning down a promotion.

Report Cites Best Practices to Support Employee Caregivers

The 14 case studies in the new report, “Supporting Working Caregivers: Case Studies of Promising Practices,” include well-known organizations from both the for-profit and nonprofit sectors, and both large and small employers. They represent a broad set of industries, including financial services, health care, higher education, home care, management consulting, media, and technology.

There is “no one size fit all” solution to meeting the needs of employee caregivers, say the researchers. But, even with the diversity of the 14 participating organizations “there is clear evidence of promising practices” identified through these interviews, they note.

Researchers gleaned best practices from 14 nonprofits and for profits (from very large employers with over 200,000 workers to ones with less than 200 workers), detailing in the report released on June 8, 2017, how these organizations assist their caregiver employees. These companies provide a broad array of information resources and referrals, flexible work arrangements, paid time off for caregiving, emergency backup care, and, in some cases, high-touch counseling and care management advice.

“Family caregivers juggle their loved one’s needs with their own personal and professional goals every day. AARP hopes this report will encourage more employers understand caregiving and support their employees’ success,” said Nancy LeaMond, executive vice president and chief advocacy and engagement officer in a statement. AARP sponsored the 49-page report.

According to researchers, interviews with business and human resources executives from the profiled organizations indicated that time and flexibility are what matter most to employees when it comes to balancing work and caregiving. Close to half of the employers interviewed provide paid time off for caregiving as well as emergency backup care and flexible work arrangements.

All offer employee caregivers a combination of information resources, referral services and advice by phone. Most provide resources online, typically through an employee assistance program (EAP) or an intranet portal. More than half offer phone consultations or 24/7 expert hotlines. Several interviewees stressed the value of providing on-site, independent eldercare consultants, noting that employees appreciate both the convenience and the respect for their privacy.

“ReACT represents a cross-sector employer effort to raise awareness of and spur action to meet the challenges millions face every day while taking care of an older loved one,” said Drew Holzapfel, convener of ReACT, in a statement. “It’s exciting to see how leading organizations are showcasing the value of employee caregivers’ dual roles at home and in the office.”

Organizations Give Thumbs Up to Assisting Employee Caregivers

Interviewees at the participating organizations were not shy in explaining the importance of offering caregiver assistance to employees.

Michelle Stone, Fannie Mae’s Work-Life Benefits Senior Program Manager, says, “We have been asked, ‘How can you afford to do this?’ Our response is, ‘How can we afford not to?’ The program helps our company and our employees save time and money, and the return on investment is substantial.”

Michelle Martin, Vice President, Human Resources Specialty Services, CBS Corporation, states, “Our hope is to fill the gaps in support along the continuum of care so that employees not only have what they need to care, but also the peace of mind to do so without worrying about their job.”

“At Allianz Life, we like to say, ‘we’ve been keeping promises to our employees and customers since our founding.’ Nothing matters more than our employees and we work every day to provide them with benefits that allow for work-life balance and peace of mind,” says Suzanne Dowd Zeller, Chief Human Resources Officer.

Adds Audrey Adelson, manager of work-life, Emory University, “Our program is based on a continuum of care model, designed to support not only entrenched caregivers, but also those who anticipate becoming a caregiver and those whose caregiving responsibilities have ended and are beginning to move beyond caregiving.”

AARP Rhode Island Champions Caregiving Temporary Disability Insurance

Most employers recognize that some of their best workers are not at their best when they are caregivers in crisis for feeling the onset of burnout,” AARP Rhode Island State Director Kathleen noted. “One of the reasons is that most employers and their human resources managers respond to the needs of caregivers is because they are not far removed from caregiving if not caregivers themselves. They know that caregiving responsibilities sometimes must take precedence over work. And they understand that what is good for the caregiver is also good for their business.

“In Rhode Island, caregiving temporary disability insurance – legislation championed by AARP – gives caregivers paid leave to attend to caregiving tasks or as respite when a break from work benefits all concerned. Employers should assess their policies and give thought to the importance of supporting their caregiving employees’ success. This is true of businesses large and small and non-profits as well. These bosses can start by simply asking themselves what their expectations would be if they were an employee.”

Rhode Island CEOs might consider obtaining a copy of this report, passing the document to Human Resources for review and ultimate implement of eldercare policies. Stressed employee caregivers will appreciate any assistance they can get to help them in their caregiving responsibilities. But, this makes good business sense, too. Assisting employee caregivers will increase employee productivity, improving the company’s bottom line.

To read the full report, go to:

Click to access AARP-ReAct-MASTER-web.pdf

The Growing Incidence of Alzheimer’s

Published in Pawtucket Times on April 26, 2016

While Congress and states are nation grappling with how to put the brakes to one of the largest public health crises in recent times, the escalating Alzheimer’s disease (AD) epidemic, the Chicago-based Alzheimer’s Association releases its annual snap shot detailing statistics on the impact of Alzheimer’s and dementia on caregivers and health care costs..

According to the 2016 Alzheimer’s disease Facts and Figures, released on March 30, 2016, this year nearly 16 million Alzheimer’s caregivers will provide 18 billion hours of unpaid care to 5.4 million afflicted with this devastating disorder. That care had an estimated value of $221.3 billion, says the report.

But that’s not all, this recently released report notes that two out of three people believe that Medicare will help them over costly nursing facility costs. Sorry it won’t. AD also has a direct impact on a caregiver’s pocketbook, too, the researchers found. More than one-third of those surveyed say they were forced by caregiving duties to reduce their hours at work or just quit their job entirely. As a result of these actions their income dropped by $15,000 compared to the previous year. Eleven percent of caregivers were forced to cut back on spending for their children’s education in order to provide support.

The 79 page Alzheimer’s Association report notes that both physical, emotional and financial support required by a person with AD may ultimately deprive family and friend care givers basic necessities, such as food, transportation and medical care. The Facts and Figures report reveals that these caregivers were 28 percent more likely to eat less or go hungry while contributing care to someone with AD, and one-fifth even sacrificed their own medical care by cutting back on doctor visits. Overall, nearly half of the caregivers say they cut back on their own expenses to afford dementia-related care for their family member or friend.

“The devastating emotional and physical effects of caring for a person with Alzheimer’s disease has been well-studied,” said Beth Kallmyer, MSW, Vice President of Constituent Services for the Alzheimer’s Association. “However, this new report shows, for the first time, the enormous personal financial sacrifices that millions of care contributors must make every day. These sacrifices jeopardize the financial security of individuals and families, as well as their access to basic needs and health care.”

This year’s Facts and Figures report found that 13 percent of family or friend caregivers sold personal belongings, such as a car, to help pay for costs related to dementia, while nearly half tapped into savings or retirement funds. On average, caregivers, many of whom do not live with the person they’re caring for, spent more than $5,000 a year of their own money to care for someone with AD; however, amounts varied with many spending tens of thousands of dollars per year.
Incidents of AD is Fast Growing

The Facts and Figures report says that out of the 5.4 million (of all ages) afflicted with AD, an estimated 5.2 million are age 65 and over. Yes, one in nine people having the cognitive disorder. Approximately 200,000, having early onset AD, are under age 65.

Also, the recently released Facts and Figures report warns that we are truly in the midst of an AD epidemic as the baby boomers grow older. By 2050, researchers say that someone in the United States will develop AD every 33 seconds. Without a medical breakthroughs to prevent or cure, the age 65 and over population with AD, the incidence is expected to nearly triple, from 5.2 million to a projected 13.8 million. Some say may be even as high as 16 million. It’s the only disease among the top 10 causes of death in America that cannot be prevented, cured or even slowed. .

Additionally, this year’s Facts and Figure report notes that AD is officially listed as the sixth-leading cause of death in this country. It is the fifth-leading cause of death for people age 65 and older. With the graying of America, AD will become a more common cause of death. At age 70, 61 percent of those with AD are expected to die before the age of 80 compared with 30 percent of people without the cognitive disorder — a rate twice as high, says the report.

The Typical Care Giver

The Facts and Figures report puts the face on a typical caregiver. Approximately two-thirds of caregivers are women, and 34 percent are age 65 or older. Forty one percent have a household income of $50,000 or less.

AD takes a devastating toll on the health of caregivers, says the Facts and Figures report. Nearly 60 percent of those taking care of loved ones with Alzheimer’s and dementia report that their emotional stress being high or very high. About 40 percent suffer from depression. One in five care givers cut back on their own physician visits because of their caregiving responsibilities. And, among caregivers, 74 percent report they are “somewhat” to “very” concerned about maintaining their own health since becoming a caregiver.

A Huge Cost on the Health Care System

The report’s researchers warn that the AD epidemic might just bankrupt the nation’s Medicare program. In 2016, total payments for health care, long-term care and hospice are estimated to be $236 billion for people with Alzheimer’s and other dementias, with just under half of the costs paid by Medicare. Nearly one in every five Medicare dollars is spent on people with Alzheimer’s and other dementias. In 2050, it will be one in every three dollars

Medicare and Medicaid are expected to cover $160 billion, or 68 percent, of the total health care and long-term care payments for people with Alzheimer’s disease and other dementias.

Seeing a huge rise in AD over the last two years, federal and state officials are gearing up to strategize a battle to fight the impending epidemic.

A Call to Action

Yes, the AD epidemic is here, right in Rhode Island. Everyone is personally touched by either caring for a family member with the cognitive disorder or knows someone who is a caregiver or afflicted.

Following the efforts of Congress to create a national strategic plan to address the rapidly escalating AD crisis and to coordinate resources across federal agencies, the Rhode Island General Assembly passed a joint resolution enacted into law to direct the Lt. Governor’s Long Term Care Coordinating Council (LTCCC) to be the vehicle to develop a state plan to address this growing public health crisis in the Ocean State. Ultimately, for over a year former Lt. Governor Elizabeth Roberts along with LTCCC members, former Division of Elderly Affairs Director Catherine Taylor, the state Chapter of the Alzheimer’s Association, universities and health care organizations with the public input gleaned from 8 listening events hammered out the 122 page battle plan with over 30 pages of recommendations.

In 2016, Lt. Governor Daniel J. McKee has picked up the ball and convened a meeting of the Executive Board on Alzheimer’s Disease and Related Disorders, consisting of researchers, advocates, clinicians and caregivers, to begin efforts to implement recommendations from the State’s Alzheimer’s Plan. The group will determine which recommendations are outdated.

With a rising population of Rhode Islander’s with AD, state policy makers must act swiftly and lose no more time in addressing this terrible disease and public health issue.