Tag Archives for National Alliance for Caregiving

Senate bipartisan proposal boon to nation’s family caregivers

Published on October 30, 2023

Many family caregivers will tell you that coping with the stress of providing care to loved ones, is made more difficult when they are forced to navigate the confusing federal bureaucracy to identify key financial and health care programs for support. Last week, S 3109, the Alleviating Barriers for Caregivers (ABC) Act, was thrown into the legislative hopper to make it easier for more than 48 million family caregivers to obtain this information. The Senate caregiver proposal was referred to the Senate Finance Committee and no House companion measure has been introduced at press time. 

On Oct. 24, the bipartisan Senate proposal was introduced by Senators Edward Markey (D-MA) and Shelley Moore Capito (R-WV) and is co-sponsored by Senators Kyrsten Sinema, (I-AZ), Susan Collins (R-ME), Bob Casey (D-PA), and Thom Tillis (R-NC). The proposal would require the Administrator of the Centers for Medicare & Medicaid Services and the Commissioner of Social Security to review and simplify the processes, procedures, forms, and communications for family caregivers to assist individuals in establishing eligibility for, enrolling in, and maintaining and utilizing coverage and benefits under the Medicare, Medicaid, CHIP, and Social Security programs respectively, and for other purposes. The agencies must conduct a review and seek input from family caregivers prior to taking actions that would improve their experiences coordinating care for their loved ones.

Currently, more than 48 million family caregivers in the U.S. help take care of loved ones. According to AARP and the National Alliance for Caregiving in the U.S. report, caregivers provide support ranging from selecting the best providers; coordinating multiple health and long-term care providers; navigating the care system; advocating with providers, community services, and government agencies; and managing medications, complex medical tasks, meals, finances, and more.

According to AARP, most caregivers say additional information and support for managing these needs is essential. One in four family caregivers (25%) report they want help figuring out forms, paperwork, and eligibility for services and 26% say that it is difficult to coordinate care across various providers and services. While most (61%) work full- or part-time, and some also care for children, family caregivers spend almost 24 hours a week caring for a loved one on average, says the Washington, DC-based advocacy group.

Personal caregiving experiences leads to calls for caregiver assistance 

Being family caregivers, both Senators Markey and Capito, primary sponsors of S 3109, like many caregivers, encountered red tape when they attempted to find needed federal caregiving programs and services to care for their parents.

“When my mother suffered from Alzheimer’s, my father was her caregiver in our home in Malden,” remembers Senator Markey. “Caregivers serve on the frontlines of our nation’s health care system by giving our families and friends the care and support they need to remain in their homes and communities with their loved ones. However, our aging and disabled community members can’t get the care they need if their caregivers – the backbone of their treatment – are struggling to navigate complex, burdensome, and stressful processes each and every day while also still managing day-to-day family and professional responsibilities. 

“As a caregiver for my parents during their struggle with Alzheimer’s disease, I know personally the level of responsibility put on family caregivers and the burdens, which can be created by federal process and procedure,” said Senator Capito. “Caregivers in West Virginia and across our country put family first and balance multiple priorities at once, which is why we must do all we can to alleviate roadblocks that could delay and even prohibit them from receiving the support they need,” she said. 

Calls for upper Chamber to pass caregiver proposal

At press time, 32 national aging and health care strongly support passage of S 3109.

“Family caregivers are the backbone of our nation’s long-term care system, and they are overwhelmed with their responsibilities and time spent managing their loved one’s care,” said Executive Vice President and Chief Advocacy and Engagement Officer Nancy LeaMond. “The Alleviating Barriers for Caregivers Act could help save family caregivers valuable time and reduce their stress by making it easier to navigate resources, eligibility, benefits, and health systems when providing care, she says.  

“Our concern is that these federal caregiver programs are so complicated, they become virtually inaccessible, discouraging family and friends from providing caregiving services. The ABC Act is the first step to holding CMS and SSA accountable for eliminating these barriers to caregiving so people with intellectual and developmental disabilities can live their lives in the community,” said Robin Troutman, Deputy Director at National Association of Councils on Developmental Disabilities.

“The Rosalynn Carter Institute for Caregivers (RCI) supports the Alleviating Barriers for Caregivers Act. Far too often family caregivers are faced with burdensome administrative obstacles in accessing the resources and supports to which they’re due. As system fragmentation is a significant component of caregiver strain, we commend this important first step to better streamline, simplify, and coordinate access across federal programs, said Dr. Jennifer Olsen, CEO of the Rosalynn Carter Institute for Caregivers.

“Being a caregiver to someone living with Alzheimer’s is already an incredibly difficult and emotionally draining job. When you layer on top of it the daunting task of navigating our country’s complex healthcare coverage system, it can become downright overwhelming for even the smartest person. This bill is an important step toward making it easier for caregivers to fully advocate on behalf of their loved ones to ensure they have access to the diagnostic, pharmaceutical, and treatment services they need, said George Vradenburg, Chair and Co-founder of UsAgainstAlzheimer’s.

Congress must come together to support caregivers

Family caregivers across the national  provide 36 billion hours of unpaid care, valued at an estimated $600 billion annually. In the Ocean State, 121,000 family caregivers provide 113 million hours of unpaid care valued to be 2.1 billion. These caregivers need assistance from Congress to access resources to provide care to their loved ones. 

There is 372 days left until the 2024 president elections. AARP research tells us that a majority of voters, 78%, are either a current, past, or future family caregiver. Over 70% of voters across the political spectrum say they would be more likely to support a candidate who backed proposals to support family caregivers, such as a tax credit, paid family leave, and more support and respite services.

Hopefully, more Senators will see the value of S. 3109 and quickly become cosigners. It’s time the newly elected House Speaker Mike Johnson (R-LA) and his caucus put the need of their caregiver constituents first, over their political priorities, and support passage of a House companion measure. The House Problem Solvers Caucus can be instrumental in pushing for the introduction and passage. Time will tell.

For more information about caregiving, go to www.aarp.org/caregiving.

For a copy of the 2022 National Strategy to Support Family Caregivers, go to https://acl.gov/sites/default/files/RAISE_SGRG/NatlStrategyToSupportFamilyCaregivers.pdf

Annual retirement survey: Caregivers less likely to save. Support for this critical role.

EBRI Survey Says Unpaid Caregivers Less Likely to Save for Retirement

Published in RINewsToday.com on July 24, 2023

According to the 33rd annual Retirement Confidence Survey (RCS) released last week, caregivers are more likely to have lower levels of assets and more likely to have problems with debt than non-caregivers. Because of this they are also less likely to have saved for retirement, and are more likely to retire earlier than planned for reasons out of their control, which can reduce the lifestyle of caregivers in retirement.

According to the Employee Benefit Research Institute (EBRI), a nonpartisan organization researching health, personal finance and economic security issues, the RCS is the longest-running survey of its kind that measures worker and retiree confidence. The survey is conducted jointly by EBRI and Greenwald Research, a firm specializing in retirement, employee benefits and health care research.

The online survey of 2,537 Americans was conducted from Jan. 5 through Feb. 2, 2023. All respondents were ages 25 or older. The survey included 1,320 workers and 1,217 retirees, and this year included an oversample of roughly 944 completed surveys among caregivers (598 workers and 346 retirees).

“Caregivers can take on many roles and responsibilities when taking on the care of a relative or friend. Unfortunately, what we found is that caregiver retirees are more likely than non-caregivers to say that their overall lifestyle in retirement is worse than they expected it to be before they retired,” said Craig Copeland, director, Wealth Benefits Research, EBRI in a statement released on July 18, 2023.

Key findings in the 2023 RCS Caregivers Report

The RCS’s findings also indicate that caregivers are more likely to have little financial cushion in retirement, having virtually no financial assets and are more likely to have a problem with debt than non-caregivers.  Twenty five percent of caregivers have less than $1,000 in savings and investments compared with 15 percent of non-caregivers. At the same time, caregivers are less likely to say that debt is not a problem — 36% compared with 48% among non-caregivers.

The researchers found that 55% of caregivers who work, and 37% of retired caregivers reported that they provide financial assistance to the recipients of their care. Over one-third of working caregivers (35%) and retired caregivers (37%) say they provided $5,000-$14,999 in financial support to their caregiving recipient in the past 12 months.

RSC’s study also found that the unpaid caregiver’s role and responsibilities are more likely to have a negative impact on their mental and physical health, than in doing specific financial tasks. Among working caregivers, 66% say their mental health is negatively impacted by the caregiving they provide, and 57% say their physical health is negatively impacted. Fifty four percent of the working caregivers reported that they had difficulty saving for emergencies and could not work the hours they wanted or needed to work.

According to RSC’s study there are no significant differences between caregivers and non-caregivers strongly or somewhat agreeing that they feel knowledgeable about managing their day-to-day finances.  Additionally, there are also no significant differences in the likelihood of caregivers and non-caregivers strongly or somewhat agreeing that they feel knowledgeable about managing savings and investments for the future.

Caregivers in many instances have less confidence in their finances than non-caregivers, say the researchers, noting that when it comes to preparing for retirement, caregivers are just as likely as non-caregivers to have done various retirement preparation tasks. These include having tried to figure out how much money they will need to have saved by retirement, thought about how much money to withdraw from their retirement savings and investments, and planned for how they would cover an emergency or big expense in retirement.

The distributions of the ages at which both caregivers and non-caregivers retired are not different, say the researchers, noting that the likelihood of retirees having retired earlier, later, or when planned are also not different between caregivers and non-caregivers. However, the findings say that the top reason caregivers were most likely to have retired earlier than planned was because they had to care for a spouse or another family member. 

Finally, RSC’s survey found that caregiver retirees are more likely to say that their overall lifestyle in retirement now, compared with how they expected it to be before they retired, is worse than non-caregiver retirees. Specifically, 31% of caregiver retirees say it is worse, compared with 20% of non-caregiver retirees.

A call for Congress and state policies to assist Caregivers

“EBRI’s study further confirms that America’s 53 million unpaid family caregivers are experiencing harsh financial effects due to caregiving. From taking on debt to spending down savings, too many family caregivers are sacrificing their financial health to fulfill their care responsibilities, says Jason Resendez, President & CEO of the National Alliance for Caregiving. “Without federal policies such as paid family and medical leave, family caregivers will continue to risk their financial security to provide essential care for their loved ones,” he says.

According to Maureen Maigret, Chair of the Aging in Community Subcommittee of the Long-Term Care Coordinating Council, the findings are no surprise to her. They mirror findings from the 2020 National Alliance for Caregiving and AARP report, Caregiving in the U.S. which found 61% of family caregivers were women, 45% had seen a financial impact due to caregiving, and an increase in family caregivers reporting fair or poor health since 2015.

“It’s estimated that 121,000 Rhode Island caregivers provide an economic value of $2.1 billion for the care they provide,” says Maigret. 

“The fact that women represent a larger percent of unpaid caregivers is significant in looking at differences in financial situation of caregivers vs. non-caregivers,” says Maigret, who serves on the board of the Senior Agenda Coalition and Village Common of RI.

“There continues to be a wage gap for women workers which impacts them in their retirement years”, she says, noting that U.S. Census data shows there is a 21% difference in average Social Security benefits for Rhode Island women and a 43% difference in pension income.

“Women are also over-represented in a number of paid caregiving jobs with depressed wages such as nursing assistants and childcare workers, and this impacts them in retirement,” says Maigret, calling on state lawmakers to pass legislation to expand the Temporary Caregiver Insurance law paid leave program funded entirely by workers from 6 to 12 weeks as most states with such programs have done. They could also increase state funding for the caregiver respite program to allow greater amounts of respite for family caregivers to work or address their own needs.  

“The Rhode Island General Assembly can also consider a tax credit program to help offset the costs incurred by family caregivers as several states have done,” adds Maigret, suggesting that they could consider lowering the age for the Office of Healthy Aging @Home Cost Share program from 65 to 60 years to allow more caregivers of seniors with disabilities to access this program thus relieving some of their financial burden.

Deb Burton, Executive Director of RI Elder Info, notes that Rhode Islanders are disproportionately impacted by the cost of caregiving because in comparison to other states, “We have a higher per capita ratio of individuals over the age of 85 in the state. Many people in their 60’s and 70’s retired to care for their parents who are in their 80’s, 90’s and 100’s,” says the gerontologist. 

“There are also disparities in financial strain among caregivers based on race, ethnicity and age of the caregiver which must be considered in light of the EBRI study,” says Burton, citing an article penned by Richard Eisenberg. According to Eisenberg’s article in AARP. “The Family Caregivers Feeling the Most Strain” Hispanic family caregivers, spend an average of 44% of income on caregiving, African Americans spend 34% and White caregivers spend 14% on caregiving costs. Caregivers ages 71 to 91 pay more than twice the amount of caregivers ages 51 to 70. 

“We urgently need to create a Statewide Plan on Aging to address the multiple ways our added longevity is intersecting with our financial, familial and community roles,” she says.

“The House commission on older adults will begin meeting in September and we will begin by looking at a broad set of policies and programs.  We haven’t established what our agendas will look like, as of yet, but issues raised within this new report may be part of the conversation,” says Rep. Lauren Carson (D-District 75, Newport) who chairs the new study commission to take a look at funding, coordination, and deliver of state programs and services to seniors. 

“Over the next 10 years, we’ll likely have 15 to 20 percent more seniors in Rhode Island, and we need to be prepared,” says Carson, noting that the commission will take a look at all the challenges and issues at the outset.” We’ll develop more specifics as we move forward. I’m very interested in this retirement confidence survey, and I think it could really be useful to our commission as we look at the myriad of issues facing our older Rhode Islanders,” she says.

The RCS report focusing on caregivers can be viewed by visiting www.ebri.org/rcs-caregivers.  

Caregiving in the US found at https://www.caregiving.org/research/caregiving-in-the-us/

For estimates of #of RI caregivers: https://www.aarp.org/content/dam/aarp/ppi/2023/3/valuing-state-estimates.doi.10.26419-2Fppi.00082.009.pdf

For caregiver data, go to US Census Age Group Gender Gap data @ https://www.census.gov/library/visualizations/interactive/exploring-age-groups-in-the-2020-census.html

Study: One in Five Americans Are Unpaid Family Caregivers

Published in the Woonsocket Call on May 17, 2020

As the nation sees a growing number of aging baby boomers, workforce shortages in health care and long-term care settings, increased state funding for community-based services, and a growing number of seniors requiring assistance in their daily activities, caregivers are needed more than ever. According to a recently released report from National Alliance for Caregiving (NAC) and AARP, an increasing number of unpaid family caregivers are stepping up to the plate to care for their older family members or friends. The caregiver report’s findings indicate that the number of family caregivers in the United States increased by 9.5 million from 2015 (43.5 million) to 2020 (53 million) and now encompasses more than one in five Americans (19 percent).

First conducted in 1997, with follow up surveys in 2004, 2009 and 2015, the Caregiving in the U.S. studies are one of the most comprehensive resources describing the American caregiver. Caregiving in the U.S. 2020 was conducted by Greenwald &a Associates using a nationally representative, probability-based online panel. More than 1,700 caregivers who were age 18 or older participated in the survey in 2019.

Demand for Caregiving Rising as Nation’s Population Gets Older

The 107-page Caregiving in the U.S. 2020 report also reveals that family caregivers are in worse health compared to five years ago. As the demand for caregiving rises with the graying of the nation’s population, the report calls for more be done to support this vital work.

“As we face a global pandemic, we’re relying on friends and family to care for the older adults and people living with disabilities in our lives,” notes C. Grace Whiting, JD, President and CEO of NAC, in a May 14 statement announcing the release of this report. “Caregivers are essential to the nation’s public health, and the magnitude of millions of Americans providing unpaid care means that supporting caregivers can no longer be ignored, she says, noting that report’s findings reveals that growing need.

According to Whiting, family caregivers care for more people than five years ago and they take on more care responsibilities as roughly one in four care for two or more people. “Many individuals are caring for a longer time, with nearly a third (29 percent) of caregivers nationwide reporting they have been caregiving for five years or more—up from 24 percent in the last study,” states Whiting.

Who are today’s caregivers?

This new caregiver study shows that 39 percent are men and 61 percent are women. The average age is 49.4 years. The profile of the family caregiver is also changing, too. While caregiving spans across all generations, Caregiving in the U.S. 2020 found more young people providing care, including 6 percent who are Gen Z and 23 percent who are Millennials. Nearly half (45 percent) are caring for someone with two or more conditions—a significant jump from 37 percent in 2015.

As to ethnicity, the caregiver report notes that six in 10 are non-Hispanic White (61 percent), 17 percent are Hispanic, and 14 percent are African American.

The report’s findings indicate that one in 10 of the caregiver survey respondents are enrolled in college or taking classes (11 percent), 9 percent have served in the military and 8 percent self-identify as lesbian, gay, bisexual, and/or transgender.

Caregivers in Poorer Health, Feeling Financial Strain

Caregiving in the U.S. 2020 also found that caregivers face health challenges of their own with nearly a quarter (23 percent of caregivers find it hard to take care of their own health and 23 percent say caregiving has made their health worse. The report also notes that personal finances are a concern for family caregivers: 28 percent have stopped saving money, 23 percent have taken on more debt and 22 percent have used up personal short-term savings.
Sixty one percent of the caregiver respondents work and have difficulty in coordinating care.

The May 2020 caregiver report states on average, caregivers spend 23.7 hours a week providing care, with one in three (32 percent) providing care for 21 hours or more, and one in five (21 percent) providing care for 41+ hours—the equivalent of a full-time unpaid job.

“The coronavirus pandemic is exacerbating the challenges family caregivers were already facing from a personal health, financial and emotional standpoint,” said Susan Reinhard, RN, PhD, Senior Vice President at AARP. “Family caregivers provide vital help and care for their loved ones, yet this survey shows that they keep getting stretched thinner and thinner. We must identify and implement more solutions to support family caregivers—both in the short term as we grapple with coronavirus and in the long term as our population ages and the number of family caregivers declines.”

: “Without greater explicit support for family caregivers in coordination among the public and private sectors and across multiple disciplines overall care responsibilities will likely intensify and place greater pressure on individuals within families, especially as baby boomers move into old age,” warns the report’s authors, calling on Congress and state lawmakers to develop policies that ensure that caregivers do not suffer deteriorating health effects and financial insecurity.

Thoughts from AARP Rhode Island…

“The wealth of information in this report is an essential guide to policymakers,” said AARP Rhode Island State Director Kathleen Connell. “It reveals important trends and underlines future needs. For AARP, it provides information on how, as an organization, we can best serve Rhode Island’s 136,000 family caregivers. The challenges they face vary, making it very important that we can provide focused resources that meet any one caregiver’s needs. The report’s overall takeaway – that the number of caregivers is rising dramatically – is a call for increased awareness and support. This responsibility starts at the very top of federal, state and municipal government and flows all the way down to family members who can better share caregiving responsibilities. Many will be asked to step outside their comfort zone, so we all will have to work together,” adds Connell.

Connell noted that the report points out the shift from traditional residential health care settings to community-based settings. “The research reaches a clear conclusion,” Connell observed. “Families will have to fill new roles, learn new skills and absorb more out of pocket caregiving expenses. This will create additional the stress for many family caregivers. That’s why it is so important that we develop the training, tools and other resources caregivers require.”

A 2019 AARP report, Valuing the Invaluable, calculated that Rhode Island family caregivers provide 114 million unpaid hours of care annually. Based on the average $15.76 per hour wages of paid caregivers, family caregivers represent an economic value of an estimated $1.8 billion.

The 2020 study was funded by AARP, Best Buy Health Inc. d/b/a Great Call, EMD Serono Inc., Home Instead Senior Care®, The Gordon and Betty Moore Foundation, The John A. Hartford Foundation, TechWerks, Transamerica Institute, and UnitedHealthcare.

For a copy of Caregiving in the U.S. 2020, go to
https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf.