Tag Archives for Senator Shelley Moore Capito

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

AARP launches campaign to support Family Caregivers

Published in RINewsToday on July 5, 2021

With caregiving costs skyrocketing, and with caregivers now estimated to be spending $7,242 annually out-of-pocket, AARP launches a national campaign to push for passage of the Credit for Caring Act.

The Washington, DC-based aging advocacy group has endorsed the bipartisan legislative proposal that would provide up to a $5,000 nonrefundable federal tax credit for eligible working family caregivers. The caregiver bill was introduced on May 18th  in the Senate by Senators Joni Ernst (R-IA), Michael Bennet (D-CO), Shelley Moore Capito (R-WV), and Elizabeth Warren (D-MA) and in the House by Representative Linda Sánchez (D-CA).

According to the National Alliance for Caregiving and AARP’s Caregiving in the U.S. 2020 study, there are an estimated 48 million Americans who provide care to either an adult or child with special needs at some time in the past 12 months. The study showed an increase of about 8 million caregivers from 2015 to 2020, indicating a significant growth in the nation’s caregivers’ population.

A 2019 AARP Public Policy Institute report noted that family caregivers in the United States provide $470 billion in uncompensated care.

Calling for Congressional Action to Assist Caregivers

AARP’s national campaign, urging passage of the Credit for Caring Act and more support for family caregivers, involves significant grassroots advocacy, including at least 60 tele-town halls, a major digital and video advertising initiative, and social media outreach through AARP’s national and state offices. Already, more than 100,000 contacts have been made with Members. In addition, more than 110 organizations, including 36 military and veterans service and support organizations, have joined AARP in asking Congress to pass the act. 

“This research reflects the incredible strain and sacrifices our 48 million family caregivers face every day. They are the backbone of our long-term care system, yet their backs are breaking from a lack of support,” said Nancy A. LeaMond, AARP Executive vice president and Chief Advocacy Officer in a June 29th statement announcing the kick-off of its new national grassroots campaign and also the release of its newest caregiver study, “AARP’s Caregiving Out- of-Pocket Costs Study.”

Adds AARP Rhode Island State Director Catherine Taylor: “This research reflects the incredible strain and sacrifices the 136,000 family caregivers in Rhode Island face every day. They are the backbone of our long-term care system, yet their backs are breaking,” 

“AARP research shows family caregivers contribute 114 million hours each year in their vital roles, “Taylor noted.

“We hear from so many caregivers from across the state who struggle financially,” Taylor added. “It is heartbreaking to know that cost, along with stress, fatigue and other factors take their toll over time. The need for support is more than evident.”

The Cost of Caregiving

Last month, AARP released its caregiver study, putting a spotlight on the out-of-pocket costs of caregiving, taking a close look at the financial strains on family caregivers and financial sacrifices (uncompensated care) they make in providing assistance to their loved ones. The study is a five year follow up to the landmark 2016 out-of- pocket caregiving study.

According to newly released study, nearly 8 in 10 of those caring for an adult family member (78%) are facing regular out-of-pocket costs, with the highest burden falling on younger caregivers and those who are Hispanic/Latino or African American. AARP researchers tracked what caregivers pay for using their own money and found average annual spending totaled $7,242 and, on average, 26% of the caregiver’s income. Housing expenses like rent or mortgage payments, home modifications, and assisted living made up more than half of caregivers’ spending, followed by medical expenses at 17%.

Out-of-pocket spending is much greater for some groups of caregivers, either in total dollars spent or as a percentage of average household income.

The researchers say that working caregivers who reported two work-related strains from caregiving, such as taking time off or working more hours, spend $10,525 each year on average – twice as much as caregivers who report one or no work-related strains.

AARP’s caregiver study also examined how caregiving financially impact between different generations of caregivers. Gen X caregivers spent the most money at $8,502. However, Gen Z and Millennial caregivers reported the greatest financial strain (spending on average $7,462 per year), spending a larger share of their household income. These caregivers have less time in the workforce to build financial security.

The AARP study found that Hispanic/Latino and African American caregivers also reported greater financial strain than White or Asian American caregivers. Hispanic/Latino caregivers spent on average, 47% of their household income on caregiving, and expenses for African American caregivers totaled, on average, 34% of income.

Researchers also found that caregivers caring for someone with Alzheimer’s disease/dementia or mental health issues tend to spend more ($8,978 per year and $8,384 per year, respectively) than those caring for someone without those conditions.

Work-related or personal strain as a result of caregiving can impact the caregiver’s long term financial security, too, say the researchers.  Nearly 47% of caregivers have experienced at least one setback as a result of being a caregiver. These setbacks include dipping into personal savings, cutting back on their own spending, and reducing how much they save for their retirement years.

More than 53% have experienced at least one work-related impact as the result of caregiving. Taking time off (both paid or unpaid) and working different hours are ways that caregiving impacts work. 

In addition to direct out-of-pocket spending, caregivers are also experiencing indirect financial setbacks. Nearly half of family caregivers (47%) experienced at least one financial setback such as having to cut back on their own health care spending, dip into their personal savings or reduce how much they save for their retirement.

Send your letters to Congress urging passage of the bipartisan Credit for Caring Act.  With an aging society and the number of caregivers increasing, a $5,000 nonrefundable federal tax credit for eligible working family caregivers might just help to pay the mounting costs of caregiving expenses. 

For more details about AARP’s caregiver study, go to:  https://www.aarp.org/content/dam/aarp/research/surveys_statistics/ltc/2021/family-caregivers-cost-survey-2021.doi.10.26419-2Fres.00473.001.pdf.

More resources for family caregivers, including a free financial workbook, are available at aarp.org/caregiving.