Chair Casey leaves mark on national aging policy. Leadership changes in DC and RI 

Published in RINewsToday on December 16, 2024

Last week, U.S. Sen. Bob Casey (D-PA), Chairman of the U.S. Senate Special Committee on Aging, held his last hearing, entitled “Empowering People with Disabilities to Live, Work, Learn, and Thrive, in SD 106.  This hearing was his swan song as Chairman of the Senate Aging Committee. 

The 3-term Democratic Senator, first elected in 2006, lost his reelection bid for a fourth term to Republican Dave McCormick, a West Point graduate, combat veteran and Bronze star recipient, and a national security expert, and former hedge fund manager.  A recount of votes confirmed that Casey lost by 16,000 votes (3,398,628 to 3,382,423) and he conceded the race on Nov. 21st.

With the dust settling after the Nov. 5th presidential election, Republicans will take control of the legislative agenda of the upper chamber, with a 53-47 majority, and control the house.

According to a Senate Aging Committee, during the upcoming 119th Congress Sen. Tim Scott (R-SC), a former Ranking Member, is expected to replace Casey as chairman on Jan. 3rd, 2025. Former Ranking Member Mike Braun (R-Ind) will leave the Senate after becoming Governor-elect of Indiana. 

An advocate for America’s seniors

During the 118th, the Senate Aging Committee under the helm of Casey held 18 full hearings, five field hearings, and one joint full hearing.  His final hearing, lasting one hour and 46 minutes, highlighted his long record as a champion for people with disabilities, and laid out his vision for how Congress must continue to work to empower them. 

“From the beginning of my time in the Senate, I heard a constant refrain from disability advocates that their needs were not being met—they faced barriers to save for their future, they were being paid well below a living wage, and they could not afford or access the care they needed,” says Casey in his opening statement. “Those refrains, including from some of the people we heard from at today’s hearing, are what inspired me to make people with disabilities a focus of my Senate career and time as Aging Committee Chairman,” he said.

During his 18 years in the Senate, Casey has been one of the foremost champions in Washington for people with disabilities. He created the Stephen Beck Jr. Achieving a Better Life Experience Act (ABLE) program, which has helped hundreds of thousands of families save for long-term care for their disabled loved ones with a tax-advantage savings account. The Associated Press hailed this legislation as “the most important new law for [those with disabilities] in 25 years.  He also made federal websites more accessible for people with disabilities, and propelled the fight for access to home care to the forefront of the national conversation. 

In addition, the Pennsylvania Senator led efforts to improve care in nursing homes by expanding and strengthening oversight over poor-performing facilities while ensuring that nursing homes and long-term care facilities have the resources they need to provide high-quality care to residents. His work has led the Centers for Medicare and Medicaid Services (CMS) to publicly release information about nursing facilities with a documented pattern of poor care, ensuring older adults and their families have the information they 

At the Dec. 12th hearing, Chairman Casey also released a series of issue briefs documenting his record chairing the Aging Committee on making government technology accessible, expanding access to home care, improving nursing homes, lowering prescription drug costs, and ensuring economic security for older adults:

“We have made a lot of progress, from creating the ABLE program to making government technology more accessible,” Casey continued. “But as we heard today, there is still a lot more to do—from expanding access to home care to finally phasing out the subminimum wage,” he added.

Kudos to Casey’s advocacy for America’s disabled Seniors

At the hearing, witnesses from Pennsylvania and national organizations testified about the impact of Casey’s work impacting the disability community in the Commonwealth and around the country.

I want to thank Senator Casey for your leadership. None of the successes I outlined would have been possible without your steadfast championship, advocacy and partnership. It is daunting to think about facing the challenges ahead, particularly the threats to Medicaid, without you at the helm, but we have been emboldened to reimagine what is possible because of your leadership,” says Witness Ai-Jen Poo, President of the National Domestic Workers Alliance and Executive Director of Caring Across Generations.

Witness Neil McDevitt, Mayor of North Wales, Pennsylvania, noted: “Senator Casey, you have been a steadfast ally of North Wales Borough, the Commonwealth of Pennsylvania, and millions of disabled and Deaf Americans. We owe you a debt that can never be repaid.”

Things are actually changing. We are not yet where we need to be when it comes to disability access and acceptance, but we are getting there. It brings me great joy when I hear of disabled people in my community getting good paying jobs and not being relegated to sheltered workshops for less than minimum wage,” adds Erin Willman, CEO of White Cane Coffee in Warren, Pennsylvania. 

Witness Lydia Brown, Director of Policy, National Disability Institute, told the attending Senators:“Ten years ago, Sen. Casey’s leadership in introducing and passing The ABLE Act changed the game. People whose disabilities began before age 26 can now access a savings vehicle that can conserve up to $100,000 total without their savings counting against them in determining eligibility for SSI and Medicaid. Money in an ABLE account can be used for a wide range of qualified disability expenses, including otherwise unaffordable assistive technology and health care, as well as educational and employment related costs. For many disabled people on Medicaid, an ABLE account is also their only available means to save for retirement.”

A fond farewell 

“Bob Casey served honorably as the chair of the Senate Special Committee on Aging.  He held a wide range of hearings intended to develop a record that could be used to help shape future legislation,” says Max Richtman, President & CEO, National Committee to Preserve Social Security and Medicare who also is a  former staff director of the Senate Special Committee on Aging. Casey had held numerous hearings on issues facing older adults that helped build support for components of the Older Americans Act reauthorization – which just passed the Senate and may be included in the end-of-year package, noted Richtman. 

“Senator Casey also held hearings on disabled older adults, including one with former Social Security Commissioner Martin O’Malley to discuss what the Social Security Administration (SSA) is doing to make the application process easier,” added Richtman, noting that other hearings were held on scammers preying on the elderly – designed to help older adults and their families know what to look for — and protect against.  

“We can only hope that when Republicans assume control of the Senate in January, this committee will continue the serious work of looking after the interests of seniors, who have contributed so much to our society and yet are among our most vulnerable citizens,” says Richtman.

“Leadership Council of Aging Organizations (LCAO) thanks Senator Bob Casey for his leadership and dedication to improving the lives of older Americans through his work on the Senate Aging Committee,” said Debra Whitman, LCAO Chair. “We look forward to collaborating with incoming Chairman Rick Scott to continue addressing the needs and enhancing the well-being of our nation’s growing aging population,” she says.

“As Chairman of the Senate Special Committee on Aging, Senator Bob Casey was a critical champion for seniors. He fought to strengthen Social Security and Medicare, stop elder abuse, and improve conditions in nursing homes. Casey will be greatly missed in the Senate by everyone who cares about senior issues. We urge the next chairman of this invaluable committee to continue his legacy.” Says Nancy Altman, President of Social Security Works.

“It is wonderful to have a Senate Aging Committee and Senator Casey’s terrific advocacy but inexcusable for the House not to restore its counterpart, which Chairman Claude Pepper proved is indispensable,” said Robert Weiner, former Chief of Staff of the House Select Committee on Aging and later a senior White House spokesman.

Announcing job transitions and retirement – in Rhode Island

Two well-known aging advocates have announced their departures.

The Alliance for Better Long-Term Care announces the retirement of Kathleen “Kathy” Heren. She dedicated 26 years to serving Rhode Island’s seniors.  For the past 15 years, Heren has served as the Rhode Island State Long Term Care Ombudsman, tirelessly advocating for the rights and well-being of residents in long-term care facilities across the state. She is known for her “fierce dedication, wisdom, and compassion have made her an unwavering champion for those in need.”

After serving as Executive Director of LeadingAgeRI for over 16 years, James P. Nyberg is leaving the nonprofit to become Senior Advisor at the Boston-based Public Consulting Group.   He will provide his expertise to the company on home and community-based services.

During his tenure, he significantly advanced aging services by advocating for quality, affordable care and fostering partnerships with state and national stakeholders. His leadership has driven innovative initiatives addressing the needs of older Rhode Islanders while supporting workforce development and professional growth among member organizations.

Nyberg ably served as Chair of the state’s Advisory Commission on Aging for over six years.

Bipartisan efforts strengthens the Dementia public health infrastructure

Published in RINewsToday on December 2, 2024

In the waning days of the Biden administration, Congress has moved one step closer to assisting states to continue to effectively implement dementia interventions.  Following passage of H. R. 7218 on Sept. 17th, by voice vote on Nov. 21st, the U.S. Senate passed S. 3775, also without objection. At press time, the bipartisan legislation now heads to President Biden’s desk to be signed into law.

Once signed, the new law re-authorizes the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act (P.L.115-406) enacted in 2018, empowering public health departments across the country to implement effective dementia interventions in their communities.

In a March 2024 fact sheet, the Alzheimer’s Impact Movement (AIM) calls for Alzheimer’s and other dementias to be considered an urgent public health issue, noting that nearly 7 million seniors across the nation are currently living with Alzheimer’s.

While partisan bickering has reduced the number of bills passed during the 118th Congress, Democratic and Republican lawmakers seek solutions for containing the skyrocketing costs of care, finding a cure for debilitating brain disorders, and supporting caregivers. 

The nation spends more than $360 billion per year, including $231 billion in costs to Medicare and Medicaid. Barring any major breakthroughs to prevent, slow down, or cure Alzheimer’s, the number of Americans with Alzheimer’s is expected to double by 2060, costing the nation more than $1.1 trillion per year, says AIM’s Fact Sheet.

Congress continues funding of Dementia effective interventions

In the Senate, S. 3775 was spearheaded by Sens. Susan Collins (R-ME) Catherine Cortez Masto (D-NV), Tim Kaine (D-VA), and Shelley Moore Capito (R-WV), and cosponsored by Sens. Jack Reed and Sheldon Whitehouse.  It’s companion measure, H.R. 7218, was introduced in the House by Reps. Brett Guthrie (R-KY), Chairman of the Health Subcommittee of the House Energy & Commerce Committee, along with Chris Smith (R-NJ), Paul Tonko (D-NY), and Maxine Waters (D-CA).

With its enactment in 2018, P.L. 115-406 accelerated a multi-pronged public health approach to reduce risk, detect early symptoms, advance care, improve data, and ultimately change the trajectory of this devastating disease.

Headed by the Centers for Disease and Prevention (CDC), the reauthorization would authorize $33 million per year, in line with current appropriations, over the next five years to support:

1.  Alzheimer’s Disease and Related Dementias Public Health Centers of Excellence dedicated to promoting effective Alzheimer’s disease and caregiving interventions, as well as educating the public on Alzheimer’s disease, cognitive decline, and brain health. 

2.  Public Health Cooperative Agreements with the CDC that are awarded to State Health Departments to help them meet local needs in promoting brain health, reducing risk of cognitive decline, improving care for those with Alzheimer’s, and other key public health activities. 

3.  Data Grants to improve the analysis and timely reporting of data on Alzheimer’s, cognitive decline, caregiving, and health disparities at the state and national levels.

Since the original Bold Infrastructure for Alzheimer’s Act passed, the CDC has made 66 awards to 45 state, local and tribal public health departments to help them implement effective dementia interventions such as reducing risk, increasing early detection and diagnosis, and supporting the needs of caregivers.

“Alzheimer’s disease is one of the greatest and most under-recognized public health threats of our time. Nearly seven million Americans—including 29,600 Mainers—are living with the disease, and that number is soaring as our overall population grows older and lives longer,” said Maine Sen. Collins, a founder and Senate co-chair of the Congressional Task Force on Alzheimer’s Disease in a statement announcing the passage of the legislation.  

“The passage of this bipartisan legislation is a tremendous victory for families and communities nationwide. By reauthorizing the BOLD Infrastructure for Alzheimer’s Act, we are reaffirming our commitments to providing the tools needed to fight this devastating disease, and to not let Alzheimer’s be one of the defining diseases of our children’s generation as it has ours,” says Collins.

“Since the original BOLD Infrastructure for Alzheimer’s Act passed, public health departments have been able to improve brain health across the life course in their communities,” said Robert Egge, Alzheimer’s Association chief public policy officer and AIM president. “The BOLD Reauthorization Act will help public health departments implement effective strategies that promote brain health, address dementia, and support individuals living with dementia and their caregivers,” said Egge. “We urge the President to support the Alzheimer’s community and swiftly sign this bipartisan bill into law,” he says.

Rhode Island response

“Getting this bill across the finish line is a win for the 25,000 Rhode Islanders living with Alzheimer’s, their adult children who work tirelessly as unpaid family caregivers, and for the health and economic needs of the next generation too.  We must continue the progress we’ve made against Alzheimer’s.  We’ve got to find better treatments for Alzheimer’s and related dementias. The federal government must do its part to reduce risk, detect early symptoms, and advance care while lifting the burden on unpaid caregivers,” said RI Sen. Reed.

Since the original BOLD Infrastructure for Alzheimer’s Act passed in 2018, Reed noted that the Rhode Island Department of Health (RIDOH) has been awarded $3.8 million in BOLD Infrastructure for Alzheimer’s Act grants from the CDC. RIDOH has used the federal BOLD grant funds to help to implement effective Alzheimer’s interventions, including boosting early detection and diagnosis, reducing risk, and preventing avoidable hospitalizations, he says.

Victoria O’Connor, program manager at the RIDOH’s Alzheimer’s Disease and Related Disorders (ADRD), who chairs the state’s Advisory Council on ADRD, agrees with Sen. Reed’s assessment about the positive impact of this federal grant on state-wide public health interventions for those caring for persons with dementia.

“The RIDOH Alzheimer’s Disease and Related Disorders Program leads a statewide Advisory Council, convening critical partners, subject matter experts, and people with lived experience to advise implementation of the BOLD funded workplan as well as oversee the Rhode Island State Plan on Alzheimer’s Disease and Related Disorders 2024-2029. This collaborative approach has led to successful implementation of public health interventions statewide that aim to empower all individuals impacted by dementia to achieve their best quality of life.” says O’Connor.

Other congressional actions to combat Alzheimer’s  

Earlier this year, Sen. Reed helped pass the National Alzheimer’s Project Act (NAPA) Reauthorization Act and the Alzheimer’s Accountability and Investment Act (AAIA).  Sen. Whitehouse was also a cosponsor of the National Alzheimer’s Project Act (NAPA) Reauthorization Act.  Both bills were signed into law by President Biden. 

The NAPA Reauthorization Act (P.L.,118-93) reauthorizes NAPA through 2035, considered a roadmap to coordinate federal efforts in responding to Alzheimer’s and other forms of dementia.  Since NAPA was first passed in 2011, Alzheimer’s research funding has increased seven-fold.  Today, funding for research into Alzheimer’s and other dementias totals over $3.8 billion.

The Alzheimer’s Accountability and Investment Act (P.L. 118-93) would require the Director of the National Institutes of Health (NIH) to submit an annual budget to Congress estimating the funding necessary to fully implement NAPA’s research goals.  This will help ensure Congress can make a well-informed decision to determine necessary Alzheimer’s research funding levels.

We have made tremendous progress in recent years to boost funding for Alzheimer’s research, which holds great promise to end this disease that has had a devastating effect on millions of Americans and their families,” said Sen. Collins, who authored NAPA and AAIA.

“These two bills will maintain our momentum and make sure that we do not take our foot off the pedal just as our investments in basic research are beginning to translate into potential new treatments. We must not let Alzheimer’s to be one of the defining diseases of our children’s generation as it has ours,” she says.

And as a member of the Appropriations subcommittee that oversees funding for the National Institutes of Health (NIH), Sen. Reed helped provide a $275 million increase for Alzheimer’s disease research in the fiscal year 2025 Senate Labor, Health and Human Services, Education, and related Agencies Appropriations bill.  In 2019, NIH awarded Brown University researchers, along with Boston-based Hebrew SeniorLife (HSL), over $53 million in federal research funds  to lead a nationwide effort to improve health care and quality of life for people living with Alzheimer’s disease and related dementias, as well as their caregivers.

Expanding Medicare on political agendas: In-home Health Care critically important

Published in RINewsToday on October 14, 2024

This week Vice President Kamala Harris unveiled a “Medicare at Home” proposal on ABC’s The View that would expands Medicare to assist older Americans to age in place at home by covering some of the cost of in-home care. The proposal targets adults who are part of the ‘sandwich generation,’ estimated to be 105 million Americans who are raising children along with taking care of their elderly parents.

The Medicare benefit to assist caregivers would propose to have cost-saving benefits for the federal government by allowing seniors to stay at home rather than being sent to costly nursing homes. It would also reduce hospitalizations, too.

Harris told about her personal experience as a caregiver, providing care to her mother, Shyamala Gopalan, a biomedical scientist, who died of cancer in 2009 at the age of 70. Caring for a parent can translate into “trying to cook what they want to eat, what they can eat,” she said. “It’s even trying to think of something funny to make them laugh or smile,” she added.

“We’re talking about declining skills” of older people, “but their dignity, their pride, has not declined,” Harris added.

“There are so many people in our country who are right in the middle. They’re taking care of their kids and they’re taking care of their aging parents, and it’s just almost impossible to do it all, especially if they work,” Harris said.  “…we’re finding that so many are having to leave their job, which means losing a source of income, not to mention the emotional stress,” she said, explaining why there is a need to expand Medicare to cover more in-home care services.

Harris’ Issues on her website – Protect and Strengthen Social Security and Medicare

“Vice President Harris will protect Social Security and Medicare against relentless attacks from Donald Trump and his extreme allies. She will strengthen Social Security and Medicare for the long haul by making millionaires and billionaires pay their fair share in taxes. She will always fight to ensure that Americans can count on getting the benefits they earned”.

The Costs

The Brookings Institution recently estimated that a “very conservatively designed” program would cost $40 billion a year. They noted that “controlling demand in such a program is nearly impossible – for reference, Medicaid, which covers far fewer adults than Medicare, actually spent $207 billion on long-term services and supports in 2021”.

In addition, “Home health is such a hotbed of fraud,” said Theo Merkel, a health policy expert at the Paragon Health Institute and the Manhattan Institute. “If the proposal is adopted, taxpayers could end up paying for everyone who stays at home with their Medicare-eligible family member as a government paid Service Employees International Union member.”

The Cato Institute, a libertarian think tank headquartered in Washington, D.C., charges that Harris’ new Medicare home care benefit is “uncompassionate, fiscally reckless, and a corrupt attempt to buy the votes of Medicare enrollees and their middle-aged children in an election year.”

Examining the Differences…

According to Matthew E. Shepard, Communications Director for the Center for Medicare Advocacy, the new Harris proposal is quite different from the existing home care benefits that Medicare’s 65.5 million enrollees receive. ”The new proposal focuses on Long Term Services and Supports, something of a term of art in the health care world. While details are scarce, it would provide, we believe, ongoing affordable home care aide service without a need for skilled care or that strict definition of homebound,” said Shepard.  The proposal’s funding would come from increased savings in Medicare Part D as the list of negotiable drugs grows  [a historic provision of the Inflation Reduction Act which is lowering the cost of senior’s medication]  savings currently estimated at $6 billion in 2026, and which will only grow as more drugs are added, he noted.

“We are going to save Medicare that money, because we’re not going to be paying these high prices [for drugs] and that those resources are then put to use in a way that helps a family,” Harris said.

The Trump proposal

The Trump/Vance campaign quickly issued a statement taking credit for already making a commitment to America’s seniors receiving at-home care, saying that Harris’ Medicare expansion policy was just following his lead. Former President Trump released his home care platform last summer, according to an Oct. 8th statement. “Specifically, President Trump will prioritize home care benefits by shifting resources back to at-home senior care, overturning disincentives that lead to care worker shortages, and supporting paid family caregivers through tax credits and reduced red tape,” noted the statement.

One of Trump’s 20 point platforms is “Fight for and protect social security and Medicare with no cuts, including no changes to the retirement age”. In the accompanying 16-page document, which, supports Medicare it says, “President Trump has made absolutely clear that he will not cut one penny from Medicare or Social Security. American citizens work hard their whole lives, contributing to Social Security and Medicare. These programs are promises to our Seniors, ensuring they can live their golden years with dignity. Republicans will protect these vital programs and ensure Economic Stability. We will work with our great Seniors, in order to allow them to be active and healthy. We commit to safeguarding the future for our Seniors and all American families. We will strengthen Medicare. Republicans will protect Medicare’s finances from being financially crushed by the Democrat plan to add tens of millions of new illegal immigrants to the rolls of Medicare. We vow to strengthen Medicare for future generations.”

 Dementia caregiving already set to quadruple in 2025

AARP notes on their website that one expansion of caregiver coverage, “a program for dementia patients and their caregivers that launched this year will quadruple in 2025, serving more of the country. The program, called Guiding an Improved Dementia Experience (GUIDE), provides a 24/7 support line, a care navigator to find medical services and community-based assistance, caregiver training and up to $2,500 a year for at-home, overnight or adult day care respite services. Patients and their caregivers typically won’t have copayments”.

Praise for expanding Medicare benefits

“We have long championed the expansion of federal support for long-term care,“ says Max Richtman, President and CEO, National Committee to Preserve Social Security and Medicare (NCPSSM), noting that Harris’ proposal gives that cause an enormous boost.

“Expanded Medicare coverage for home health care also would provide relief to millions of ‘sandwich generation’ Americans, who are struggling to provide care for their elderly relatives while also raising children.  Those ‘sandwich generation’ members are not Medicare beneficiaries, but would most definitely benefit from Harris’ long-term care plan,” says Richtman in an Oct. 8 statement.

According to Richtman, the plan also would add hearing and vision coverage to traditional Medicare. “Proper hearing and vision care are essential to healthy aging — but too many beneficiaries forgo it due to cost and lack of coverage. It is long past time that those coverages be added,” he added.  

Co-Director David Lipschutz says that the Center for Medicare Advocacy (CMA) strongly supports the proposed enhancement of Medicare coverage for on-going home care. “Access to services and supports in the home for those who are unable to independently perform activities of daily living would provide immeasurable help to millions of beneficiaries and their families and is an important step forward for the Medicare program,” says CMA’s Lipschutz. To maximize access to care for people who need it, expansion of home care coverage in Medicare should be combined with enforcing the benefit that exists now, he suggests. 

“Recognizing that most older persons and those with disabilities prefer to remain at home when they need help with daily living tasks, the Senior Agenda Coalition has worked for years to increase access to home and community-based care at the state level as these services are one of the biggest gaps in Medicare,” says Maureen Maigret, Policy Advisor for Senior Agenda Coalition of RI.  To include them in Medicare will lift a financial burden on both recipients and family caregivers as home care costing at least $35/hour that  can be out of reach for far too many who need these services to stay at home,” she says.

“We have not seen many details about the plan, but it would be important to make sure that Medicare provider reimbursement levels are sufficient to allow direct care staff to earn livable wages in order to have workforce sufficient to meet the demand,” note Maigret. “This new Medicare home care benefit should also be a boon for states as it can prevent persons from spending down their resources to a level where they become eligible for state Medicaid and need costly nursing home care,” she says.  

In a new paper for O’Neill Institute for Georgetown LawMcCourt Professor Judith Feder and Nicole Jorwic explore how adding a home care benefit can help beneficiaries and family caregivers. “While this new benefit would not reach the full population in need of long-term care, paired with investments in Medicaid, it’s a good strong start-and given our nation’s resources, clearly within our means,” say the authors. 

“A support system that relies on unpaid family members and underpaid workers is simply not sustainable for the future,” warn the authors.

“Our failure to make Medicare “whole” by addressing Long Term Services and Support needs is not about a shortage of resources, it’s about a shortage of political will. It’s time the nation stepped up,” they say.

Pay attention to Caregiver voters

AARP is nonpartisan and does not take a position on campaign proposals, though AARP has previously said financial relief is needed to help individuals age in place at home and support family caregivers, says Sarah Lovenheim, AARP’s vice president, external relations.

According to AARP’s “She’s the Difference” survey released last month, 96% of woman aged 50 and over say they are highly motivated to vote in the upcoming elections, making them one of the most driven and key voting groups.

“Any political candidate would be wise to pay attention to the concerns and needs of caregivers today. Voters over age 50, who disproportionately make up America’s 48 million plus caregivers, could make or break elections up and down the ballots,” says Nancy LeaMond, AARP’s executive vice president and chief advocacy and engagement officer. “From recent battleground polls, we know that roughly one-third of swing voters over age 50 identify as family caregivers,” she notes.

“Supporting family caregivers is an urgent need – not only for families struggling to get by but for our country’s future,” warns LeaMond.

Regardless of who wins the election, a Medicare at home proposal cannot happen without Congressional support. As the presidential campaign winds down, older voters must make it extremely clear to lawmakers seeking their vote how they feel about expanding Medicare benefits.