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.

AARP: Making Seniors a Priority in Getting COVID-19 Vaccines

Published in Pawtucket Times on January 11, 2021

Last month, a statement the Rhode Island Department of Health (RIDOH) announced recommendations from the Rhode Island COVID-19 Vaccine Subcommittee for hospitals that vaccinations would begin for frontline hospital workers against COVID-19. This recommendation was made at an emergency meeting of the Subcommittee. RIDOH has accepted this recommendation and has communicated to hospitals that they may begin vaccinating these workers, as soon as vaccine arrives.

Two doses will be needed for someone to be fully immunized. Second doses will start arriving in Rhode Island in roughly three weeks. Rhode Island expects to receive approximately 10,000 doses of Pfizer vaccine the first week it is available, and approximately 19,000 doses of Moderna vaccine the first week it is available. Vaccine will come to Rhode Island in weekly allotments over the coming months, says RIDOH.

Epidemiologists, primary care providers, pharmacists, pediatricians, long-term care advocates, ethicists, nonprofit leaders, school leaders, faith leaders serve on Rhode Island’s COVID-19 Vaccine Subcommittee.  This group is responsible for performing an independent review of the process for evaluating the safety and efficacy of the vaccine. The Subcommittee is advising RIDOH on how to prioritize distribution of the vaccine to ensure that it is done equitably, and in a way that best protects the State as a whole.

At press time, the U.S. Food and Drug Administration (FDA) has granted an Emergency Use Authorization for a COVID-19 vaccine developed by Pfizer, and a vaccine made Moderna.

Making COVID-19 Vaccine Available Throughout the Ocean State

“After a rigorous scientific review, we know that COVID-19 vaccine is safe. We also know that it is one of the most effective vaccines ever developed,” announced Director of Health Nicole Alexander-Scott, MD, MPH in the Dec. 14 statement. “In the coming weeks and months, as vaccine becomes more available, getting vaccinated will be one of the most powerful things you can do to keep yourself and the people you love safe from COVID-19. We are going to work to ensure that every person in every community in Rhode Island has access to the vaccine, especially those communities hardest hit by this virus,” she said.

Added, Philip Chan, MD, MS, Consultant Medical Director for RIDOH’s Division of Preparedness, Response, Infectious Disease, and Emergency Medical Services, “We have never had a vaccine that has been – or will be – more closely monitored than the COVID-19 vaccine.”

“Teams of scientists at the national level have been scrutinizing thousands of pages of technical data for weeks, focusing on vaccine effectiveness, safety, and the manufacturing process, and our own local review has happened here in Rhode Island. I absolutely plan on getting vaccinated when it is my turn.,” said Chan.

According to RIDOH, the national vaccine trials for the COVID-19 vaccine involved tens of thousands of people to make sure they meet safety standards and people of different ages, races, and ethnicities. There were no serious safety concerns. (When vaccinated against COVID-19, people do sometimes develop post-vaccination symptoms such as soreness at the spot of the shot and headaches. This is normal, healthy, and expected. It means your immune system is working to develop protection.) Several systems are in place to do ongoing safety monitoring of the vaccine.

As of January 8, the last update on RIDOH’s COVID-19 Data Tracker, out of the 31,541 does administered, 29,743 have been vaccinated with their first of two doses, only 1,798 people were fully vaccinated with two doses.

Don’t look for the roll out of COVID-19 to take days or weeks, it will take months to complete, warns RIDOH officials. Phase 1 of the vaccination program is expected to run through late March.  At press time, the state is currently working its way through the top three tiers of this phase, including hospital staff, healthcare workers, EMS personnel, home health and hospice workers, nursing home staff and residents, high-risk incarcerated persons, first responders, school nurses, and even hard-hit communities.

Finally, those in the final two tiers of Phase 1 to be vaccinated include outpatient providers (Dentists, primary care), Dialysis Center workers and death care professionals, expected to begin Jan. 25, and adults over 75 years of age, expected to start by February.

Phase 2 is expected to kick-in by late March.  A number of factors are being considered to target the distribution of COVID-19 vaccinations a person’s age, high-risk conditions, occupation and geography.  

Make Older Rhode Islanders a Priority in Receiving Vaccines

AARP Rhode Island, representing 132,000 older Rhode Islanders, calls for Governor Gina Raimondo to make the state’s seniors a priority in its time-line for on distributing COVID-19 vaccines.  The Jan. 8 correspondence, cosigned by Kathleen Connell, State Director of AARP Rhode Island and Phil Zarlengo, the group’s State President, called on Raimondo “to increase COVID vaccination transparency,” as it relates to older Rhode Islanders.

AARP Rhode Island asked the Governor to include the numbers of Rhode Islanders vaccinated by age and other criteria on a daily/weekly basis on RIDOH’s COVID-19 Data Tracker.  Specially, the largest state-wide advocacy group called for the state’s website to include:

·         the numbers and percentages of older Rhode Islanders by race and ethnicity, that have been vaccinated:

·         the number of Rhode Islanders vaccinated and their age demographics on a daily/weekly basis;

·         a clear and easy-to-understand schedule of vaccine administration for all populations; and the process by which individuals may seek and obtain a vaccine;

·          the numbers and percentages of long-term care residents, by facility, that have received their first and second doses of vaccines;

·         the numbers and percentages of long-term care staff, by facility, that have received their first and second doses of vaccines.

While acknowledging the many challenges the state officials must tackle in determining how to equitably, safely and effectively distribute COVID-19 vaccines, Connell and Zarlengo call for Rhode Islanders age 50 and older to be made a priority in receiving a vaccine.

“The data clearly show that the older people are, the higher risk they face if they contract COVID-19.  Given that older individuals are at a greater risk of death from COVID-19, we strongly urge you to ensure that Rhode Islanders age 50 and older are prioritized to receive a vaccine.  These individuals must be given priority access to vaccines, in addition to those individuals receiving care in nursing homes and other long-term care facilities,” say Connell and  Zarlengo.

“For years, the long-term care system has been shifting away from institutional care in nursing homes to home and community-based settings (HCBS). Here in Rhode Island, a significant percentage of long-term services and supports are provided in the home or settings such as assisted living facilities, residential care facilities, veterans homes, and in individuals’ own homes,” says Connell and Zarlengo, stressing that this why the state should prioritize seniors, especially those with underlying conditions, receiving care in these additional settings and the staff providing care, to receive a COVID-19 vaccine.

Finally, AARP Rhode Island’s correspondence urges the Governor to ensure that all providers are fully complying with established state procedures for vaccine distribution and prioritization. “We urge you to investigate and take swift action against anyone who attempts to commit fraud, including by inappropriately selling the vaccine or intentionally providing vaccines to those who do not meet qualifying criteria in an attempt to circumvent the distribution process.”

From AARP’s National

 “We urge public health officials at the state and local level, as they decide on vaccine allocations, to rely on the evidence and make plans backed by science.  As production is ramping up, AARP is advocating hard to ensure every older American who wants to get the vaccine can get it.  It’s also vital that distribution plans for authorized vaccines are smoothly implemented.  There’s no time to waste: it’s time for full-scale mobilization, and any delays or early bottlenecks in distribution systems need to be addressed urgently,” says AARP Executive Vice President and Chief Advocacy & Engagement Officer Nancy A. LeaMond in a Dec. 28 statement.  

 

Congress Passes RAISE Family Care Givers Act

Published in the Woonsocket Call on January 14, 2018

With the dust finally settling after the heated partisan battles over the dismantling President Obama’s landmark Obamacare and later reforming the nation’s tax code, Congressional Democrats and Republicans put political and philosophical differences aside to overwhelming pass by voice vote the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2017.

The RAISE Family Caregivers Act of 2017, introduced in the U.S. Senate by Senators Susan Collins (R-ME) and Tammy Baldwin (D-WI), was passed on January 8, 2017. Two months earlier a House companion measure (H.R. 3759), introduced by Reps. Gregg Harper (R-MS) and Kathy Castor (D-FL), was passed. At press time, the legislation now heads to the President’s desk to be signed into law.

The caregiver legislation would direct the U.S. Secretary of Health and Human Services to develop and sustain a strategy to recognize and support family caregivers across the nation. This bipartisan legislation has been endorsed by more than 60 aging and disability organizations, including AARP, the Alzheimer’s Association, the National Committee to Preserve Social Security and Medicare, the Elizabeth Dole Foundation, the Michael J. Fox Foundation, and the Arc.

Universal Praise for Congressional Passage

Congress clearly understands that caregiving is not a partisan issue but a life experience for millions of Americans.Yes, everyone at some time in their life may take on the role of caregiver for parents, spouses, children and adults with disabilities, or personally know caregivers.

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 caregiver 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.

“Family caregivers play an essential role in our communities by dedicating time and attention and making countless personal and financial sacrifices to care for their loved ones,” said Sen. Collins upon the Senate bills passage. “I am delighted that our bipartisan legislation to develop a coordinated strategic plan to leverage our resources, promote best practices, and expand services and training available to caregivers will now become law,” adds the Maine Senator, who chairs the Senate Special Committee on Aging.

Senator Sheldon Whitehouse sees the value of the RAISE Family Caregivers and its impact to Rhode Island caregivers. “The passage of the bipartisan RAISE Family Caregivers Act is an important first step toward easing the burden on the caregivers who mean the world to the family members they care for.” says the Rhode Island Senator who serves on the Senate Special Committee on Aging.

“Family caregivers play a key role in supporting their loved ones in Rhode Island and throughout the nation. adds Democratic Policy and Communications Committee Co-Chair David N. Cicilline. “The RAISE Family Caregivers Act ensures that family caregivers have the support and the resources they need to do their jobs safely and effectively. As a co-sponsor of H.R. 3759, I made sure my colleagues understood that this bill needed to become law as soon as possible, and I am glad that it passed both Chambers without objection. Now I urge President Trump to sign it and allow this important law to take effect”

“Thanks to the efforts of bipartisan Senate and House champions—Senators Collins and Baldwin and Representatives Harper and Castor—the RAISE Family Caregivers Act will help address the challenges family caregivers face,” said AARP Chief Advocacy & Engagement Officer Nancy A. LeaMond, in a statement. “Family caregivers are the backbone of our care system in America. We need to make it easier for them to coordinate care for their loved ones, get information and resources, and take a break so they can rest and recharge,” she says.

According to LeaMond, family caregivers take on a range of tasks including managing medications, helping with bathing and dressing, preparing and feeding meals, arranging transportation, and handling financial and legal matters. She estimates that the unpaid care that family caregivers provide helps delay or prevent costly nursing home care, which is often paid for by Medicaid.

What’s in the RAISE Family Caregiver Act?

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 (meetings open to the public) 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 development of the initial strategy would take up to 18 months, followed by updates of the strategy biennially. The bill would improve the collection and sharing of information, including information related to evidence-based or promising practices and innovative models regarding family caregiving; better coordinate, assess, maximize the effectiveness, and avoid unnecessary duplication of existing federal government activities to recognize and support family caregivers. The strategy and work around it could help support and inform state and local efforts to support family caregivers, promoting greater adoption of person- and family-centered care in all health and Long-Term Service and Support (LTSS) settings, with the person and the family caregiver (as appropriate) at the center of care teams

In addition to requiring the development of a strategy to support the nation’s family caregivers, the bill also establishes an advisory body that will bring together stakeholders from the private and public sectors to make recommendations that communities, providers, government, and others are taking and may take to help make the big responsibilities of caregiving a little bit easier.

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.

Calls for More Caregiver Assistance

“In Rhode Island, we’re working hard at staying ahead on legislation supporting caregivers,” said AARP Rhode Island State Director Kathleen Connell. “We passed temporary caregiver insurance, which covers thousands of working caregivers with salary protection much like TDI (Temporary Disability Insurance). Earned-paid sick leave fills in a gap that caregiver TDI may not cover in emergency situations. The AARP-back CARE Act now requires hospitals, upon admitting patients, identify a designated caregiver, inform that person on discharge and provide training for at-home medical tasks. We have passed legislation making it easier for caregivers to modify their homes. And just this month, the state opened applications for a grant program we fought for in the current budget that provides up to $5,000 in hard cash for caregivers who make qualifying home improvements.” (Download a grant application at http://www.aarp.org/ricaregiving)

“We cannot stop here,” added Connell. “And the RAISE Act keeps the need for ongoing strategic planning and smart policymaking on the front burner. The numbers demand escalating action that will improve conditions not just for people who need care, but their family caregivers as well. But it is very important to emphasize that all taxpayers benefit when someone with chronic illness or aging disabilities can stay in their homes, rather than move into Medicaid-supported nursing homes. We all win when we support caregivers.”

NOTE: “The Rhode Island Chapter of the Alzheimer’s Association has a commitment to assisting caregivers navigate the various challenges of caring for someone living with Alzheimer’s and other related dementias,” says Donna McGowan, Executive Director of the Alzheimer’s Association, RI Chapter. Call 1-800-272-3900 for details about caregiver and provider services (including confidential support, information, and referrals to local resources via access to a 24/7 Helpline, care consultation, caregiver support groups, education programs for families, and online information (www.alz.org/ri ).