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

Will Magaziner fulfill call to reestablish House Aging Committee?

Published in RINewsToday on October 9, 2023

With Congressman David Cicilline retiring from Congress, no House lawmaker has yet stepped up to reintroduce, H.R. 583, the Rhode Island lawmaker’s resolution to reestablish the House Select Committee on Aging (HSCoA). Without receiving a vote in the House Rules Committee at the end of the 117^th Congress, the resolution was considered “dead.” On his way out Cicilline was not successful in passing the legislative baton and finding a new original sponsor.

The resolution to approve the initial HSCoA was passed on October 8, 1974, by a large margin (299–44) in the House. Its legislative duties expired in 1992 during the 103^rd Congress, as the House leadership was under pressure to reduce its internal costs to save $1.5 million and to streamline the legislative process.

On May 26, 2016, Cicilline began his legislative efforts to bring back the HSCoA. The simple resolution, consisting of 245 words, would authorize the Select Committee to study the use of all practicable means and methods of encouraging the development of public and private programs and policies which will assist seniors in taking a full part in national life and which will encourage the utilization of the knowledge, skills, special aptitudes, and abilities of seniors to contribute to a better quality of life for all Americans.

HSCoA would not craft legislative proposals, but hold investigative hearings to put the Congressional spotlight on aging issues. Its purpose was to push for legislation and other legislative actions, working closely with standing committees, through regular committee channels.

According to the Congressional Research Service, it would be relatively simple to create a select committee by approving a simple resolution that contains language establishing the committee—giving a purpose, defining membership, and detailing other issues that need to be address. Salaries and expenses of standing committees, special and select, are authorized through the Legislative Branch Appropriations bill.

Once introduced, the resolution would be referred to the House Rules Committee for consideration. If passed, it would be scheduled for a floor vote. If passed, no Senate action or Presidential signature would be required.

The fourth time’s not the charm

Over eight years (during four Congressional Sessions), Cicilline was unsuccessful in getting the support of either the Republican or Democratic House Speakers to pass his resolution. During the 114^th Congress Cicilline began his legislative push to bring back the HSCoA by introducing H. Res. 758. Twenty-eight Democratic lawmakers out of 435 House members (with no Republican supporting) became cosponsors. But it caught the eye of the co-chairs of the Seniors Task Force (later renamed the House Democratic Caucus Task Force on Aging & Families), Congresswomen Doris Matsui (D-CA) and Jan Schakowsky (D-IL). The lawmakers became cosponsors of this resolution.

Correspondence penned by Cicilline to House Speaker Paul Ryan (R-WI) requesting support of H.R. 758 went unanswered. Without the blessings of the GOP House Speaker, the resolution was not considered in the House Rules Committee and no floor vote scheduled.

Two years later, with Ryan’s GOP caucus still retaining the control of the House during the 115^th Congress, Cicilline’s H. Res. 160 would again not gain legislative traction. At that time only 27 Democratic lawmakers stepped forward to become cosponsors, just like the previous Congressional session, with the resolution not attracting one single GOP lawmaker as a cosponsor.

For the third time, during the 116^th Congress, Cicilline would introduce H. Res. 821 to resurrect the HSCoA. Even with House Speaker Nancy Pelosi controlling the lower chamber’s legislative agenda, the resolution would not get Rules Committee consideration, again blocking it from reaching the floor for a vote.

Even with House Speaker Pelosi retaining the gavel again during the 117^th Congress, Cicilline could not push H. Res 583 to the legislative goal line. Like Cicilline’s other three attempts, the resolution was referred to the House Committee on Rules for mark-up and vote. Without Pelosi’s blessings and support for passage, like previous attempts, the resolution died at the end of the Congressional session.

Cicilline’s efforts drew the support and attention of Max Richtman, President and CEO of the Washington, DC-based National Committee to Preserve Social Security and Medicare, who was former Staff Director of the Senate Special Committee on Aging, the Leadership Council of Aging Organizations (representing 66 national aging groups), along with President Nancy Altman of Social Security Works, and Chair of Strengthen Social Security Coalition.

Robert Weiner, former chief of staff of the HSCoA, Tom Spulak, former staff director and General Counsel of the House Rules Committee, and Vin Marzullo, a well-known aging advocate in Rhode Island, were strong advocates for the resolution’s passage.

It’s a no-brainer not to bring back HSCoA

Weiner, the President of Robert Weiner Associates News, who was a close friend and confidant of Claude Pepper, clearly knew the importance Cicilline’s efforts to bring back the HSCoA and its impact on the quality of life of America’s seniors. Weiner, who served as Staff Director for the Subcommittee on Health and Long-term care from 1975 to 1977 and Chief of Staff of the full Aging Committee, from 1976 to 1980, remembered how the late Congressman Claude Pepper used the Select Committee as a force to push Congress to tackle aging issues.

“Bringing it back would be immeasurably helpful regardless of which party has the White House or controls Congress in assuring the best health care programs for seniors,” says Weiner.

Weiner says that the HSCoA successfully prodded Congress to abolish forced retirement, investigate nursing home abuses, monitor breast cancer screening for older women, improve elderly housing, and bring more attention to elder abuse by publishing a number of reports, including “Elder Abuse: An Examination of a Hidden Problem and Elder Abuse: A National Disgrace,” and “Elder Abuse: A Decade of Shame and Inaction.” The Committee’s work would also lead to increased home care benefits for the aging and establishing research and care centers for Alzheimer’s Disease, he said.

“One of the best-known aging accomplishments of Claude Pepper was to end mandatory retirement by amending the Age Discrimination in Employment Act,” adds Weiner, noting that with HSCoA support the bill passed 359 to 2 in the House and 89 to 10 in the Senate, with President Jimmy Carter signing the bill into law despite strong opposition of the Business Roundtable and big labor.

Weiner noted that among the HSCoA’s other legislative achievements was supporting the passage of legislation creating standards for supplemental insurance and holding hearings to expose cancer insurance duplication. “Witnesses were literally forced to wear paper bags over their heads to avoid harassment by the insurance companies. That legislation became law,” he said.

According to Weiner, “Republican lawmakers just didn’t want to support Cicilline’s resolution to reauthorize the HSCoA,” says Weiner, despite the fact that Congressman John Heinz (R-Pa.), later a renowned Senator, was an original prime sponsor of the House resolution that would initially establish the select committee.

Seniors are now the most powerful voting block who would see the need, like Heinz, for a HSCoA, especially to protect Social Security, Medicare and other federal aging programs, says Weiner. Republican House lawmakers are threatening to cut Social Security benefits and raise the full-time retirement age, he warns, calling their actions “reforms.” “But the program is actually solvent, with trillions in surplus beneficiaries paid for as the Pepper-Reagan original deal provided,” he notes.

If HSCoA resolution is passed during the 118^th Congress, the Republicans would control its legislative agenda. Historically, the House select committee allowed open, bipartisan debate from different ideological perspectives to promote bipartisan consensus that, in turn, would facilitate the critical policy work of the standing committees.

Passing the torch

Who will ultimately pick up the legislative baton from Cicilline to become Rhode Island’s fiery aging advocate. Will it be Congressman Seth Magaziner, or the newly elected Congressman from Rhode Island’s Congressional District 1 to step to the plate?

Why shouldn’t Magaziner or Cicilline’s replacement follow in the footsteps of former Rhode Island Congressman John E. Fogarty (dec.) and be the original sponsor of legislation that will have a major impact on national aging policy. The lawmaker would become a hero to America’s seniors. The White House Conference on Aging was the result of legislation successfully sponsored by Fogarty, and led to the enactment of his bill to establish an Administration of Aging in the Department of Health, Education and Welfare. He was the original sponsor of legislation that established the Older Americans Act of 1965.

But even if a Rhode Island Congressman makes a decision to become the original sponsor to Cicilline’s resolution that reestablishes the HSCoA, passing this resolution in a GOP-controlled House will require support from that caucus.

Congressmen Brian Fitzpatrick (R-PA) and Josh Gottheimer (D-NJ), co-chairs of the “Problem Solvers Caucus,” consisting of essentially an equal number of 63 Republican and Democratic lawmakers, may well be the way to finally pass a resolution to reestablish the HSCoA.

Weiner, who would later become a senior staffer to both the Clinton and Bush White Houses and now is a national columnist and winner of the National Press Club President’s Award for recruiting young journalists, agrees that it is now time to bring the Problem Solvers Caucus to the forefront to endorse and together have a bipartisan House support push for reestablishing the HSCoA. “The Aging Committee has always been bipartisan, with leaders including not only Pepper and Ed Roybal as chairs, but supportive ranking minority members including then House members — later Senators — Chuck Grassley, Bill Cohen, and John Heinz.

AARP report: States’ care for seniors “painfully inadquate”. Major gaps in RI

Published in RINewsToday on October 2, 2023

Last week, the Washington, DC-based AARP released its latest Long-Term Services and Supports (LTSS) Scorecard, calling care provided to seniors and persons with disabilities during the last three years after the COVID-19 pandemic “painfully inadequate.” This nine-page report detailed state specific data, finds major gaps in providing care in every state, including Rhode Island, especially in these categories: “Housing for Older Adults”, “Home Care Costs” and “Home Health Aide Supply”.

The LTSS Scorecard, consisting of 50 indicators, focused on: affordability and access; choice of setting and provider; safety and quality; support for family caregivers; and community integration, using data from a variety of publicly available sources, such as the Centers for Medicare and Medicaid Services, American Community Survey, and Bureau of Labor Statistics.

Many benefits of accessing the data

According to AARP, this Scorecard can be a roadmap for improving the LTSS systems and the lives of those who rely on assistance. Many others will benefit by reviewing this data, too. Federal, state, and local policy makers can identify priorities and ensure resources are allocated equitably. Aging advocates can glean public data and hold government officials accountable. Family caregivers can identify needed resources and become actively involved in policy discussions and advocacy. Seniors relying on long-term care programs and services can learn to inspire culture change and demand available tools. Finally, employers can improve workplace policies and practices to assist caregivers and healthcare groups so they can explore public-private partnerships and alliances.

Like the findings reported in AARP’s LTSS Scorecard in 2020, Rhode Island ranked 12^th in the country in 2023, but this year’s Scorecard reveals that the state has made some progress in improving care options for older Rhode Islanders, specifically the enrollment in the Program of All-Inclusive Care for the Elderly (PACE), as well as the availability of Adult Day Services.

“The pandemic reinforced the need to strengthen long-term care for countless loved ones across the country, including here in Rhode Island,” said AARP Rhode Island State Director Catherine Taylor in a Sept. 28th statement announcing the release of the 2023 LTSS Scorecard.

“AARP’s Scorecard shows that there are many roads to meet the needs of all Rhode Islanders who deserve the very best care, including the 121,000 family caregivers in our state. The overwhelming majority — 87% — of Rhode Islanders age 45+ would prefer to receive care for themselves or loved ones at home with caregiver assistance. Yet, our low rankings in Housing for Older Adults (51st), Home Care Costs (43rd) and Home Health Aide Supply (41st) underscore how difficult it is for them to age the way they choose. It’s time to accelerate our efforts, for the sake of saving more lives,” she says.

RI is dead last in housing

“In particular, Rhode Island’s dismal ranking for Housing for Older Adults – dead last – points to the urgent need to increase the supply of affordable, accessible housing. We can do that by passing legislation early in 2024 to strengthen homeowners’ ability to build an accessory dwelling unit (ADU) to allow them to age in place, support a family member, or house a caregiver,” Taylor said.

A national snapshot of the LTSS Scorecard’s 2023 Data

According to Scorecard, 12 states, including Rhode Island, have enacted paid family leave laws and 18 states have paid sick day laws, which can be used to assist caregivers. AARP’s latest Scorecard also reported that only 6 states provide a tax credit for family caregivers’ out-of-pocket expenses. Rhode Island does not provide a tax credit – nor is it among the 7 states that have statewide laws protecting caregivers from discrimination in the workplace that ensure they are not unfairly treated due to caregiving duties outside of work.

Meanwhile, it was reported that dozens of states experienced declines in the number of care choices that help support family caregivers. For instance, 16 states, including Rhode Island, had declines of 10% or more in access to home health aides since 2019.

Regarding Home and Community-Based Services (HCBS), the LTSS Scorecard reported that 11 states, including Rhode Island, had state policies that improve presumptive eligibility for Medicaid HCBS at the time of data collection, making it possible for people to go home to receive care after being in the hospital – rather than having to be admitted to a nursing home while their eligibility for Medicaid payments is being determined.

The research indicated that many states also have large numbers of people with low care needs living in nursing homes, indicating a lack of HCBS access and services. More than 20% of nursing home residents in Rhode Island have low needs – compared to 9% nationally.

Data confirms Major Workforce Crisis in nursing facilities across US

As to nursing homes and institutional care, the AARP’s 2023 Scorecard confirmed that a major workforce crisis exists in facilities across the country. Across all states, wages for direct care workers are lower than wages for comparable occupations, with shortfalls ranging from $1.56 to $5.03 per hour. In Rhode Island, wages are $1.79 lower than other entry level jobs.

Nationally, more than 50% of nursing staff in nursing facilities leave their job within a year (53.9% turnover rate). However, in Rhode Island, the rate is slightly better than the average, at 49.3% – with Montana, Vermont, and New Mexico experiencing the highest averages in staffing turnover.

Staffing disparities are also a significant challenge, say researchers, noting that residents of nursing facilities with high admissions of Black residents receive almost 200 fewer hours of care per year compared to residents of facilities with high admissions of white residents.

According to the LTSS Scorecard, only 22% of nursing facility residents live in a facility with a 5-star rating in the US – with less than the national average, about 20.2%, of Rhode Island residents living in a 5-star facility. Gaps in workforce and equity result in persistent problems in care, say the researchers. One measure, pressure sores, can be life-threatening as they can lead to bone or joint infections, cancer, and sepsis. In this measure, 10% of facility residents nationwide experienced a pressure sore.

Finally, this year’s Scorecard announced that there is progress being made to create innovative and effective alternatives to traditional nursing facility models. Specifically, the researchers say that 10 states, including Rhode Island, made strides in nursing home innovations, such as by utilizing Green House® Nursing Home availability and policies, which includes small facilities, private rooms, and other best practices.

AARP’s 2023 LTSS Scorecard identified recommendations that can fix the nation’s delivery of long-term care programs and services to enable seniors to age in place in their communities. It called for increasing support to the nation’s 48 million family caregivers, “who are the backbone of the long-term care system, providing over $600 billion in unpaid care, such as with paid leave, tax credits, and other mechanisms to address health and financial needs.”

AARP Rhode Island continues to call on the Rhode Island General Assembly to support the state’s 121,000 family caregivers by advocating for enhancements to the state’s Temporary Caregivers Insurance program.

Recommendations on enhancing Long-Term Services and Supports

The Scorecard’s recommendations also called for investing in states’ Home and Community-based Care Infrastructure, by increasing support and training for home health aides and home visits, supporting the ability to access and use medical devices and equipment, and updating key Medicaid regulations and payment models.

To tackle the workforce crisis, a recommendation suggests that it is crucial to support both nursing facility and in-home workforce by improving recruitment and training, increasing pay, and expanding the ability of trained nurses, aides, community health workers and other paraprofessionals to take on some aspects of care. States can choose to enact and enforce staffing and related care standards.

A recommendation also calls on States to expand the use of innovative, effective models for nursing homes can improve both quality of care and quality of life, such as with smaller facilities and private rooms and to address inequities by investing to close the staggering gaps in access to quality care and facilities and staffing shortages.

(Editor’s Note: During the pandemic, then Governor Gina Raimondo allocated $5 million towards 2 changes in nursing homes – making all rooms private and providing non-shared, private bathrooms – for all residents – efforts to follow up on this effort have not resulted in what happened to that initiative according to the RI Department of Health).

Another recommendation urges states to create multisector plans for aging and building of coalitions and age-friendly health systems, to help seniors to age in place at home by having affordable and accessible housing and transportation, improved community design, and comprehensive emergency preparedness plans.

Researchers also suggested the advancing innovation in cities, counties, and states by supporting comprehensive state- and community-wide aging plans and piloting new approaches and programs, like Green House® Nursing Homes and presumptive eligibility, that can then be scaled.

Finally, Climate Change is increasing national disasters, and the LTSS Scorecard recommends that every state have a sound emergency preparedness plan to support nursing home residents, in particular, in times of crisis – including natural disaster.

“AARP’s LTSS Scorecard shows some progress and innovation, but there’s still a long way to go before we have systems that allow people to age well, and independently, for as long as possible and support the nation’s 48 million family caregivers. It’s also clear some emerging issues deserve more attention – from whether nursing homes are prepared to confront natural disasters, to whether they have plans in place to maintain and grow their workforces,” says Susan Reinhard, Senior Vice President, AARP Public Policy Institute.

The LTSS Scorecard is a charitable project made possible by a grant from AARP Foundation, with support from The SCAN Foundation, The Commonwealth Fund, and The John A. Hartford Foundation, and has been updated every three years since 2011.

To view the full Scorecard and state-by-state information visit https://ltsschoices.aarp.org/

To view the Scorecard for specifically Rhode Island, go to: https://ltsschoices.aarp.org/scorecard-report/2023/states/rhode-island.

To view Previous Scorecards (2011, 2014, 2017 and 2020) go to https://ltsschoices.aarp.org/scorecard-report/report-archive/