Caregivers Flying Blind in Providing Complex Medical and Nursing Care

Published in the Woonsocket Call on April 21, 2019

Half of the nation’s 40 million family caregivers are performing intense and complicated medical and nursing tasks, managing multiple health conditions for their family members and friends, says a newly published AARP report.

AARP’s special report, “Home Alone Revisited: Family Caregivers Providing Complex Care,” released April 17, 2019, takes a close look at specific medical and nursing tasks (including giving injections, preparing special diets, managing tube feedings and even handling medical equipment) that family caregivers are currently doing. It’s a follow-up report to AARP’s 2012 Home Alone Study that took the first in-depth look at how caregivers managed providing complex medical and nursing care that was formerly offered by trained professionals.

Changes in the Health Care System Can Support Family Caregivers

“This report shows the extent of complex tasks that millions of family caregivers are providing every day. They are largely alone in learning how to perform these tasks,” said Susan Reinhard, RN, Ph.D., Senior vice president and Director, AARP Policy Institute, in a statement announcing the release of the a 56-page report. “About half of family caregivers are worried about making a mistake. We need to do a lot more across the health care system—with providers and hospitals—to help support these family caregivers,” says Reinhard.

Adds Rani E. Snyder, program director at The John A. Hartford Foundation, “Family caregivers are the linchpin in our health care system, particularly for older adults,” “This study shines new light on the diversity of family caregivers performing complex tasks—from men to millennials to multicultural populations—and is a rallying cry for an all hands-on-deck approach to creating age-friendly health systems that better support and prepare these often forgotten members of the health care team.”

The new statistics in this report shed more light on the demands of family caregiving,” said AARP Rhode Island State Director Kathleen Connell, a former nurse. “These described caregiving responsibilities sound like a task list for a team of home nurses, aides, dieticians, physical therapists and personal drivers who work without weekends off, much less vacations. Is there any question that people worry about making a mistake that compounds existing issues?,” she says.

“The takeaway is quite clear,” Connell added. “Caregiving is stressful and we need to expand efforts to provide assistance. And it’s a very big ‘we’ that I am speaking of. Families need to help out and share more responsibilities as well as offer respite for primary caregivers. Neighbors and extended family also can lend a hand. And we need government to continue to provide assistance through legislation that supports family caregivers. Caregiving responsibilities can be both daunting and exhausting. It’s the new reality. The good news is that as we raise awareness we can work together to improve the lives of caregivers, “ says Connell.

A Sampling of the AARP Report’s Findings

AARP’s Home Alone Revised Report report found that almost half of the caregiver respondents (48 percent) prepare special diets multiple times per day. Preparing these meals often involved taking precise measurements, following specific dietary guidelines, constant monitoring, and the use of special equipment for preparation and feeding.

Thirty percent of the respondents say preparing special diets are hard to manage, this being more challenging to men. Younger caregivers found it more difficult to manage this task than older caregivers.

The caregivers also reported that 54 percent of the survey’s respondents say they manage incontinence multiple times a day. Most say managing incontinence is more difficult than managing medications, helping with assistive devices and performing wound care. Seventy-six percent say they learned how to manage incontinence on their own. More than one in four would appreciate having assistance from another person to help.

According to AARP’s report, 70 percent of these caregivers are dealing with the emotional stress of managing pain relief in the middle of a national opioid crisis. More than four in 10 expressed concerns about giving the optimal dose. About four in 10 faced difficulties in controlling the pain of the care recipient.

Finally, 51 percent of the survey respondents assisted with canes, walkers, and other mobility devices while over a third (37 percent) dealt with wound care.

The researchers conclude that “uncomplicated world of ‘informal’ caregiving” no longer applies” to the nation’s caregivers. “In the current health care environment, it is presumed that every home is a potential hospital and every service that the person needs can be provided by an unpaid family member, with only occasional visits by a primary care provider, nurse or therapist,” say the researchers,” they say.

AARP’s Home Alone Revised Report is a must read for Congress and state lawmakers who can easily address the challenges caregivers face when providing medically complex care by crafting policies and programs that will provide support and resources to the nation’s growing number of caregivers.

This caregiving issue might be a good one for the U.S. Senate Special Committee Aging to study.

A Final Note…

AARP gathered the study’s data through a nationally representative, population-based, online survey of 2,089 family caregivers. This study employed an oversampling of multicultural groups, taking a closer look at difficult tasks, and putting greater attention on available resources and outcomes. The study’s sampling strategy ensured multicultural representation and investigated generational differences. Additionally, the researchers also explored certain topics in greater depth, including special diets, incontinence, pain, and the impact of social isolation on the caregiver.

The AARP Home Alone Study is a special report from the Founders of the Home Alone Alliance℠ (AARP, United Hospital Fund, Family Caregiver Alliance and UC Davis-Betty Irene Moore School of Nursing). With funding from The John A. Hartford Foundation to the AARP Foundation, the study took an in-depth look at the specific medical/nursing tasks that family caregivers are doing.

To read the full report, go to: https://www.AARP.org/ppi/info-2018/home-alone-family-caregivers-providing-complex-chronic-care.html.

Note: Updated April 22, 2018…

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New AARP Study Takes a Close Look at America’s Grandparents

AARP’s newest research study, highlighting the latest trends, gives us a peek into the world of grandparenting, a role that millions of Americans now take on in their later years. This number has steadily grown, from 56 million in 2001 to a whopping 70 million today.

The youngest grandparent is about 38 years old, with 50 being the average age of becoming a first-time grandparent, notes Brittne Nelson-Kakulla, AARP Research’s Senior Research. For those with children, by age 65, 96 percent of Americans are grandparents, she says.

“Today’s grandparents are an economic force that cannot be ignored,” said Alison Bryant, senior vice president of research, AARP, in an April 8 statement with the release of this 40-page report. “They are living longer, working longer, shattering stereotypes and supporting their grandchildren in a variety of ways, including financially and culturally. Nearly all grandparents are providing some sort of financial support, helping to ease the costs of raising kids,” notes Bryant.

Grandparents Pump Billion’s into Nation’s Economy

According to AARP’s study, 70 million grandparents can have a major impact on the nation’s economy. Grandparents spend money on their grandchildren, an average of $2,562 annually, this equaling approximately $179 billion dollars per year. Those dollars are spent supporting their grandchildren in a variety of ways, from helping to pay day-to-day expenses (meals, groceries, etc.) allowances, vacations, and school/college tuition costs.

The study found that grandparents have, on average, four to five grandchildren, down from six to seven in 2011. The number of grandparents in the workforce has increased in the past seven years, with 40 percent of grandparents currently employed up from 24 percent in 2011.

Grandparents enjoy the positive aspects of grandparenting such as supporting dreams and sharing roots, history and culture, and experiences, says the AARP study, but they face financial challenges, too. Thirteen percent of grandparent’s struggle with the financial expectations of being a grandparent, including the cost of education, traveling to see the grandchildren.

Seven percent of grandparents have taken on debt to help their grandchildren pay for college and one in four of those grandparents have even cosigned private student loans for their grandchildren and/or incurred credit card debt that has not yet been paid back in full.

Over the decades, the role of grandparenting has remained consistent, observes the AARP study. Grandchildren continue to refer to grandparents as “grandma” or “grandpa” (70 percent to 60 percent respectively). But, one in twenty of the grandparent respondents prefer to be called by their first name.

Serving as a Source of Wisdom

Eighty one percent of the grandparent respondents say they play a key role in their grandchildren’s life. Over half say that they serve as a “moral compass” to the grandchildren on variety of issues ranging from education, morals to values. But they say that discussing topics on sexuality and politics are way “out of their comfort zone.”

Grandparents also see the importance of teaching gender equality and rising the be strong, independent woman, too, says the AARP study.

Thirty four percent of the grandparents say they have grandchildren of mixed or difference races or ethnicities. Nearly all of the respondents believe it is important that these grandchildren know about the heritage they share. Seven in ten make an effort to help their grandchildren learn about the heritage they do not share, says Nelson-Kakulla.

Sixty eight percent say that distance is the biggest obstacle that keeps them from getting enough one-on-one time with their grandchildren. Fifty two percent of the survey respondents have at least one grandchild who lives or 200 miles away, while 29 percent live over 50 miles from the closest grandchild, up from 19 percent in 2011. Like distance, busy full-or part-time work schedules keep grandparents as well as schedules of their children and grandchildren keep them from connecting.

Grandparents are turning away from making phone calls to maintain contact with their grandchildren, turning to new technologies like email, Facebook, Video Chat and Texting to bridge the mileage gap. Forty seven percent “like” the idea of group texting messages to chat with their grandchildren and 67 percent “like” the idea of using online video chatting to keep in touch.

Finally, 89 percent of the grandparent respondents say their relationship with their grandchildren is good for their well-being and 67 percent believe this role makes them more sociable. Sixty six percent say having grandchildren makes them more active, too.

AARP’s 21-minute online survey of 2,654 grandparents ages 38 and was conducted between August 20 and September 4, 2018.by Hotspex, Inc.

For a copy of AARP’s 2018 Grandparents Today National Survey, contact Brittne Nelson- Kakulla, Senior Research Advisor, AARP Research, at bkakulla@aarp.org.

Attacking Rising Prescription Drug Costs

Published in the Woonsocket Call on April 7, 2019

The Washington, DC-based AARP timed the release of its latest Rx Price Watch report as the House Energy Commerce Committee marked up and passed a dozen bills just days ago, six that would lower prescription drug costs. The legislative proposals now go to the House floor for consideration.

AARP’s new report, a continuation of a series that has been tracking price changes for widely used prescription drugs since 2004, was circulated to House Committee members before their markup and vote and its findings sent a message to the lawmakers that they hear from their older constituents, that is the costs of pharmaceutical drugs is skyrocketing, making it difficult to fill needed prescriptions.

Poll after poll findings reflect the concerns of seniors about their ability to pay for prescribed medications. According to a Kaiser Family Foundation poll released last month, 79 percent of survey respondents view drug prices to be “unreasonable,” while just 17 percent found the costs to be “reasonable.” Twenty-four percent of these respondents found it difficult to pay the costs of their prescription drugs.

Generic Drugs Can Save Dollars

According to the new AARP Public Policy Institute (PPI) report, by Leigh Purvis and Dr. Stephen W. Schondelmeyer, the average annual cost of therapy for one widely used brand-name prescription drug in 2017 was over 18 times higher than the cost of therapy for one generic drug. The cost for a generic medication used on a chronic basis averaged $365 per year. In contrast, the average annual cost for a brand-name prescription drug was $6,798. But, four years earlier the price differential between these same market baskets was substantially smaller ($4,308 verses $751 respectively).

“Generics account for nearly nine out of every 10 prescriptions filled in the U.S. but represent less than a quarter of the country’s drug spending,” said Debra Whitman, Executive Vice President and Chief Public Policy Officer at AARP, in a statement released with the PPI’s 28 page report “These results highlight the importance of eliminating anticompetitive behavior by brand-name drug companies so that we get more lower-priced generic drugs on the market,” says Whitman.

AARP’s PPI report, entitled “Trends in Retail Prices of Generic Prescription Drugs Widely Used by Older Americans,” found that retail prices for 390 generic prescription drugs commonly used by older adults, including Medicare beneficiaries, decreased by an average of 9.3 percent in 2017, compared to the general inflation rate of 2.1 percent. The decline follows two consecutive years of substantial generic drug price decreases; the previous two consecutive years saw increases in generic drug prices. All but three of the 390 generic prescription drugs analyzed in AARP’s report had a retail price change in 2017. While prices for 297 (76 percent) drug products decreased, 90 (23 percent) products had price increases.
Six commonly used generic drug products had retail price increases of greater than 70 percent, including a nearly 200 percent increase for sertraline HCL, an antidepressant, finds the AARP.

AARP’s PPI report found that with older adults taking an average of 4.5 prescription drugs every month, those using generic prescription drugs were likely to have an average annual retail cost of $1,642 in 2017.

“The gap between average annual brand-name and generic drug prices has increased dramatically—brand name drug prices were six times higher than generic drug prices in 2013 but more than 18 times higher in 2017,” said Leigh Purvis, Director of Health Services Research, AARP Policy Institute, and co-author of the report. “As long as brand name drug prices continue to skyrocket, the value of prohibiting brand name drug company practices that slow or prevent competition from generic and biosimilar drugs cannot be overstated.”

AARP Pushes for Passage of Bills to Lower Drug Costs

Before the Committee on Energy and Commerce vote on April 3, in correspondence AARP urged Chairman Frank Pallone, Jr. (D-N.J.) and Ranking Member Greg Walden (R-Ore) to enact two bills (along with four other proposals) being considered at the morning markup session. These legislative proposals would lower prescription drug costs and had previously been approved by the Energy and Commerce Health Subcommittee.

In the correspondence, AARP’s Nancy A. LeaMond, Executive Vice President and Chief Advocacy and Engagement Officer, pushed for passage of H.R., 1499. the “Protecting Consumer Access to Generic Drugs Act of 2019.” introduced by Rep. Bobby Rush (D-IL). This proposal would make it illegal for brand-name and generic drug manufacturers to enter into agreements in which the brand-name drug manufacturer pays the generic manufacturer to keep a generic equivalent off the market. The bill was passed by voice vote.

LeaMond also supported H.R., 965, the “Creating and Restoring Equal Access to Equivalent Samples (CREATES) Act of 2019,” introduced by Reps. David Cicilline (D-RI), Jim Sensenbrenner (R-WI), Jerrold Nadler (D-NY), Doug Collins (R-GA), Peter Welch (D-VT), and David McKinley (R-WV). The proposal would establish a process by which generic manufacturers could obtain sufficient quantities of brand drug samples for testing thereby deterring gaming of safety protocols that brand manufacturers use to delay or impede generic entry. The bill passed by a bipartisan vote of 51-0.

At the markup, Pallone and Walden were able to work out philosophical differences on H.R. 1499 and H.R. 965. The two lawmakers also hammered out a compromise on H.R. 1503, the “Organize Book Transparency Act of 2019,” that would ensure that the Orange book, which identifies drug products approved on the basis of safety and effectiveness by the Food and Drug Administration, is accurate and up-to-date.

Washington Insiders say that Democratic control of the House will ensure the passage of these legislative proposals on the House floor and the bipartisan vote on the CREATES Act in the lower chamber creates an opportunity for Senate Finance Committee Chairman Chuck Grassley (R-Iowa) to successfully push his CREATES Act companion measure in the Senate.

Grassley says the broad, bipartisan action by the House Energy and Commerce Committee to advance the CREATES Act is a major win for consumers. “I look forward to advancing this bill because it will cut down on abuses in the system that keep prices high for patients. I’m also pleased that the committee advanced a bill to address pay-for-delay schemes. Although that bill is not identical to the bill I’ve sponsored in the Senate, the bill’s movement shows that the committee is serious about addressing the pay-for-delay problem,” says the Senator.

As They See It…

AARP’s LeaMond, says “Brand-name drug companies want to stifle generic competition to protect their monopolies and profits. AARP believes that eliminating these deliberate anticompetitive behaviors will result in a more robust generic drug market and greater savings for both patients and taxpayers. The Congressional Budget Office estimated that legislation such as the CREATES Act could save taxpayers more than $3 billion over a decade, and the Federal Trade Commission estimated pay-for-delay deals cost consumers and taxpayers $3.5 billion a year.

“We have long supported the CREATES Act and banning pay-for-delay agreements, and are heartened that Congress is acting to improve access to generic drugs. These bills will promote competition driving down costs for seniors,” says Lisa Swirsky, Senior Policy Analyst, at the National Committee to Preserve Social Security and Medicare.

“Congressman Cicilline has been a leader in our caucus for putting prescription drug prices at the front of our agenda. Moving generics to market faster is an important step to lower prescription drug costs for every American,” said House Speaker Nancy Pelosi. “House Democrats have made it a top priority to lower Americans’ health costs by reducing the price of prescription drugs, and these bipartisan bills show we mean to deliver,” she says.

AARP’s Launches Media Campaign, Calling on Congress to Lower Drug Costs

Published in the Woonsocket Call on March 31, 2019

Check out AARP’s latest YouTube video. The video kicks off AARP’s ‘Stop Rx Greed’ Campaign., its goal is to drive down spiraling drug costs. As people (with their faces blurred by an image of a large one-hundred-dollar bill) go about their daily routines, either shopping, jogging, doing laundry or even working, the announcer seeks to drive home the 30 second ad’s message:

“The Big drug companies do not see us as people, they see us as profits. “We’re paying the highest prescription drug prices in the world so they can make billions. Americans should not have to choose between buying medication and buying food for our families. It’s time for someone to look out for us. Congress stop the greed, cut drug prices now.”

The Stop Rx Greed campaign, launched on March 13, will include national television, radio and digital ads, editorial content, emails to members, social media posts, ongoing advocacy and grassroots activity inside the Beltway and the states, and a petition calling on Congress and the Administration support legislation being considered to lower drug costs.

“Americans are paying the highest prescription drug prices in the world,” said Executive Vice President and Chief Advocacy & Engagement Officer Nancy LeaMond, in a statement announcing the new AARP media campaign, “It’s time for pharmaceutical companies to stop deflecting blame and acknowledge that the root cause is the price they set for their products,” she said.

Calling on Trump and Congress to Lower Drug Costs

On May 12, as part of the Stop Rx Greed campaign, AARP sent correspondence to President Donald J. Trump and congressional lawmakers calling for a legislative fix to lower pharmaceutical costs. The aging advocacy group noted that Medicare beneficiaries (suffering from multiple chronic conditions), who take an average of 4.5 prescriptions per month, live on very modest, fixed incomes and warned that they can’t easily pay escalating drug prices. Many just choose to not fill their prescriptions. The median annual income of a Medicare beneficiary is just over $26,000. One-quarter have less than $15,000 in savings.

For the last 15 years, AARP has been tracking the prices of widely-used prescription drugs, says the correspondence, noting that these reports have found that “the average annual price increases for brand name drugs have exceeded the corresponding rate of inflation every year since at least 2006.”

AARP even reminded Trump and Congress that Medicare’s budget takes a hit with continual increase in prescription drug costs. “Between 2005 and 2016, Medicare Part B drug spending more than doubled from $12 billion to $29 billion. Total Medicare Part D spending is approaching $150 billion. These escalating costs will eventually result in higher taxes, cuts to important public programs, or both,” says the correspondence.

Bipartisan Support to Lower Drug Costs

As part of the media campaign, AARP Research conducted a national survey of likely 1,218 voters ages 50 and older. The survey, conducted between February 15 and March 4, 2019, found that lowering drug costs is a bipartisan issue. Eight percent of the respondents take at least one prescription medication.

A significant majority of the self-identified Republican, Democrat, and Independent respondents shared their concerns about the high price of drugs, and supported common-sense policies that will lower prices. The findings revealed that 93 percent of the respondents support making it easier to bring generic drugs to market while 92 percent call on Congress to allow Medicare to negotiate with drug companies to lower prices.

According to the AARP survey, 72 percent express concern about the cost of purchasing their medications. Nearly 40 percent say they did not fill a prescription provided by their doctor with cost being the most common reason. Over 60 percent say that prescription drug costs are “unreasonable,” fearing that they will have or will need to make budgetary trade-offs to afford paying for their medications.

The researchers also found that a majority of the respondents (Democrats, 90 percent; Republicans, 88 percent; and Independents, 90 percent) believe that pharmaceutical companies make too much profit and spend too much on advertising.

As part of the AARP’s Stop Rx Greed campaign, the nation’s large nonpartisan organization advocating for people age 50 and older, has a few ideas as to how Congress can make fixes to lower drug prices.

Let’s Take a Look at AARP’s Legislative Fix

Medicare should use its bargaining power to put the brakes on skyrocketing drug costs and lower drug prices, which is especially important for the highest priced drugs and those with no competition. This can be legislatively accomplished by allowing the Secretary of Health and Human Services to negotiate drug prices on behalf of Medicare’s 40 million beneficiaries who rely on Part D.

Congress should pass legislation capping out-of-pocket costs to protect beneficiaries and financial stability of the Medicare program. In 2015, Medicare Part D enrollees’ out of pocket spending totaled $27 billion.

Finally, legislation passed by Congress can increase competition in the market to lower prescription drug prices. Currently, Congress, is considering two bills, the CREATES Act (S. 340/H.R. 965) and efforts to ban Pay-For-Delay agreements. These two legislative proposals would help lower prices through increasing competition and providing consumers with access to lower cost generic medications.

AARP says, lower drug prices might also be achieved at the state level if states are allowed to negotiate lower prices with drug companies, giving state Attorneys Generals authority to crack down on outrageous price increases, and preserving state pharmacy assistance programs.

“There’s no one solution that’s going to solve this issue,” said John Hishta, AARP Senior Vice President of Campaigns. “Success will be when consumers are no longer price gouged by the drug industry and can afford the drugs they need.”

House Subcommittee Panel Makes Call for Expanding, Strengthening Social Security

Published in the Woonsocket Call on March 23, 2019

So it goes, to the victor goes the spoils. Over a week ago, House Democratic leadership, now controlling the legislative agenda, pushed to strengthen and expand benefits for the nation’s Social Security program.

With the 116th Congress kicking off on Jan. 2, 2019, as the majority party, the Democrats took over the legislative reins of the House of Representatives from the Republicans, who had held the majority and legislative control of the lower chamber since 2011. Now being in power allows Democratic leadership to control which bills reach the floor for a vote. In this new Congress, legislation reflecting the GOP’s philosophy as to how to fix Social Security (by privatizing the retirement program, cutting benefits, raising the retirement age, even reducing cost-of-living adjustments or lowering earned benefits) would be blocked by Democratic leadership.

Congress Puts Spotlight on Social Security

Last week, Social Security got a full and fair hearing before the House Ways and Means Social Security subcommittee.

Rep. John B. Larson (D-Conn.), chairing the House Ways and Means Social Security subcommittee, held a series of panel hearings, calling for the strengthening and protecting the nation’s Social Security program.

“What we’re addressing in these hearings is that Congress hasn’t paid enough attention to Social Security to make sure it’s actuarially sound,” he said, in his opening statement for the March 12th hearing, entitled “Protecting and Improving Social Security: Enhancing Social Security to Strengthen the Middle Class.”

According to Larson, more than 62 million Americans are already receiving Social Security benefits.

“We have a responsibility to act to strengthen this program for them,” he added. “Not to act will amount to a 25 percent benefit cut come 2034. In other words, for the person who was making $50,000 a year throughout their working career, they would actually be living at a poverty level in terms of a benefit that they would receive after these cuts,” he said.

“Not only do we need to work to protect the program, but we need a solution to make the program, as the actuaries say, “sustainably solvent,” or in other words, making sure Social Security remains strong throughout this century, not just for seniors, but for millennials too,” added Larson.

Joan Ruff, AARP’s chair of the Board, testified, saying, “Social Security is the only lifetime, inflation-protected, guaranteed source of retirement income that most Americans will have. It is the foundation of retirement security that keeps millions of older Americans out of poverty and allows them to live independently. But Social Security also provides some measure of economic security for families who face a loss of income because of the disability or the death of a wage earner. We often do not think of Social Security as a family income protection plan—yet that is exactly what it is.”

Other witnesses testified on the importance of Social Security benefits and how it provides the middle class with economic security, especially women and minorities.

One day later, Larson convened a second hearing entitled, “Protecting and Improving Social Security: Benefit Enhancements.” The purpose of holding the hearings, said Larson, was to “shine a bright light on all of the proposals to secure Social Security that will help the American people.”

Democrats Unveil Fix for Social Security

Larson also used the subcommittee panel hearing as a bully pulpit to promote his legislation, H.R. 860, “The Social Security 2100 Act.” Specifically, the bill’s eight provisions expand benefits for 62 million Social Security beneficiaries. Larson’s bill would provide an across-the-board benefit increase for current and new beneficiaries that is the equivalent of 2 percent of the average benefit. It also calls for an improved cost-of-living adjustment (COLA), through adopting a CPI-E formula, that takes into account the true costs (include health care expenses) incurred by seniors and a stronger minimum benefit set at 25 percent above the poverty line, tied to their wage levels to ensure that the minimum benefit does not fall behind. Finally, the bill would ensure that any increase in benefits from the bill do not result in a reduction in SSI benefits or loss of eligibility for Medicaid or Children’s Health Insurance Program. Finally, 12 million Social Security recipients would receive a tax cut through the eliminating the tax on their benefits.

At this time, H.R. 860 has 203 House Democrats cosponsors (including Rhode Island Representatives David N. Cicilline and James R. Langevin). Passage of the legislation requires only a simple majority vote of 218 lawmakers. With 235 Democratic lawmakers sitting in this chamber, it is expected to pass.

But, with the Senate-controlled by Republican Majority Leader Mitch McConnell of Kentucky and his GOP caucus, it will be difficult for Senators Chris Van Hollen (D-MD) and Richard Blumenthal (D-CT) to see their companion measure make it reach the Senate floor for consideration.

Larson’s first two hearings are the first in a series of hearings on Protecting and Improving Social Security. One more hearing will be scheduled with the date to be determined. After these hearings, H.R. 860 will most likely be marked up by the Ways and Means Social Security Subcommittee and full Committee before it heads to the House floor for a vote.

Enhancing Social Security Benefits

Lead-off witness Max Richtman, president of the Washington, D.C.-based National Committee to Preserve Social Security and Medicare (NCPSSM), restated his aging advocacy group’s support for Larson’s Social Security bill, H.R. 860, which enhances the retirement programs benefits and ensures its long-term solvency.

“Since the program’s creation 84-years ago, Social Security has been – and is- and enormously successful program which is essential to the retirement of the vast majority of Americans. While [the] benefits are modest, Social Security is still the single largest source of income for retired American’s. To ensure the program’s continued success, it is vitally important that long-term solvency be restored, and that Social Security benefits be improved to meet the needs of all Americans,” says Richtman.

Social Security Advocates joined Richtman at the witness table, too.

Elizabeth Marafino, president of the Connecticut Alliance of Retired Americans (from Larson’s home state), stated that Social Security is important to older Connecticut residents, making this statement more personal by sharing how her maternal grandmother, mother of six and a widow at the age of fifty, was glad to receive her husband’s social security check because it literally kept her out of the poor house.

Marafino noted, “The traditional three-legged stool of pension, personal savings, and social security is deteriorating. The ‘pension’ leg of the stool has been disappearing, eroding retirement security and making Social Security even more important. Along with the high cost of prescription drugs putting pressure on seniors’ finances, (these factors make) the need to increase Social Security benefits urgent.”

Abigail Zapote, Director of Latinos for a Secure Retirement, testified that boosting Social Security benefits is crucial to the Latino population, whose average Social Security checks are lower than other Americans. “Latinos depend on Social Security more than other groups because they tend to have lower lifetime income, longer life expectancies, higher incidence of disability and larger families,” she said.

Enhancing benefits can help older women, too, testified Joan Entmacher, a Senior Fellow at the
National Academy of Social Insurance. “Social Security is the foundation of retirement security for most Americans, but it is especially important for women,” she says, noting that women rely more on their Social Security checks than men do, even though their Social Security benefits are lower. She pointed out that the average retirement benefit for women is only 80 percent of men, making women even more reliant on Social Security, she said.

“Adjusting the regular benefit formula to make it more progressive would increase benefits for all workers, but lower lifetime earners, including women and people of color, would receive the largest percentage increases,” says Entmacher. To boost retirement benefits, she calls for the creation of caregiver credits (the majority of caregivers are women) who take off from their jobs to care for family members.

Finally, Donna Butts, the Executive Director of Generations United, testified that Social Security was important for all generations. ““For more than 80 years Social Security has been the premier example of a policy designed to secure and insure the well-being of individuals and their families. “For many it makes the difference between putting food on the table and deciding whether grandma or junior eat tonight,” she says.

The Beginning of an Honest Policy Debate

According to a NCPSSM blog posted on March 15th, “Republicans on the subcommittee, now in the minority for the first time in 8 years, appeared to be less combative than in the past.”

“This was a richer dialogue about the philosophical differences about Social Security than we’ve had in a long time,” observed National Committee legislative director, Dan Adcock in the blog posting. “There was a quest to figure out what each side could live with,” he says.

Stay tuned.

H

Trump Spending Priorities Would Fray Social Safety Net Programs

Published in the Woonsocket Call on March 16, 2019

Last Monday, President Donald Trump released his proposed FY 2020 budget request to Congress. Lawmakers, who rejected many of these budgetary spending requests in the president’s previous two submitted budgets proposals, consider his latest to be “dead-on-arrival.”

But, Trump’s $4.7 trillion fiscal blueprint, outlined in the 150-page “Budget for a Better America,” gives us a clear picture of his spending priorities and policies he seeks to implement through executive orders and regulator changes.

Trump’s FY 2020 spending plan proposes funding increases for combating the opioid epidemic, improving veteran’s health care, fixing the nation’s crumbling infrastructure ($200 billion increase), even giving the Pentagon a 5 percent increase in spending exceeding what the military asked for. White House senior advisor Ivanka Trump successfully pushed for the FY 2020 budget to include $750 million to establish a paid parental leave program and a $1 billion one-time fund to provide childcare to under served populations.

Trump’s budget proposal makes a commitment of $291 million to eliminate the spread of HIV within a decade, it slashes the National Institutes of Health’s funding by 12 percent, and the budget for the Centers of Disease Control and Prevention by about 10 percent.

Trump does not back away from his controversial stance of building a wall, putting in an additional $8.6 trillion for the construction of a U.S. Mexico border barrier. Congress had earlier opposed his demand for $5.7 billion for the construction project.

Trump Budget Proposal Puts Senior’s Earned Benefits at Risk

In 2016, Presidential candidate Trump had pledged not to cut Medicare, Medicaid or Social Security, but he does in his submitted FY 2020 budget proposal.

Trump calls for a 5 percent cut in non-defense federal agencies, including a whopping $ 1.5 trillion in Medicaid over 10 years. The budget plan instead allocates $1.2 trillion to create “market-based health care grants,” (a.k.a block grants) for states that would start in 2021. This gives states the power to set their own rules for this program.

Medicaid expansion under the Affordable Care Act (ACA) would be eliminated by Trump’s FY 2020 budget proposal by ending ACA’s protections for people with pre-existing conditions and causing millions of people to join the ranks of the uninsured. About 15 million more Americans have joined Medicaid since the ACA expansion was enacted.

Trump’s budget proposal also cuts Medicare by $845 billion over the next decade by cutting payments to hospitals and physicians, rooting out fraud and abuse, and by lowering prescription drug costs.

Meanwhile, the Social Security Disability Insurance program takes a huge budgetary cut of $25 billion and the Social Security Administration’s (SSA) operating budget is slashed by 1 percent, at a time when the agency is working hard to ratchet up its customer service provide to SSA beneficiaries.

Trump’s budget proposal would cut $220 billion from the Supplemental Nutrition Assistance Program (SNAP), popularly referred to as the food stamp program. The program currently serves 39 million people. Under this budget, beneficiaries would be required to be employed for 20 hours a week to be eligible for assistance and replacing the EBT-debit card used to purchase groceries with the delivery of a “Harvest Box” filled with non-perishable foods like cereal and pasta, canned goods and surplus dairy products.

Housing and Urban Development’s 202 housing program for seniors and people with disabilities takes a $36 million hit, says long-time aging advocate Bill Benson, principal of Washington, D.C.-based Health Benefits ABC, in the March 15th issue of Aging Policy and Public Health News.

According to Benson, several Older Americans Act programs including the Family Caregiver Support program would be cut in Trump’s budget proposal. The Long-Term Care Ombudsman Program would be cut by $1 million. Elder Justice Programs would also be cut under the President’s budget including a $2 million cut to the Elder Justice Initiative at Administration for Community Living.

” Cruelest of all [budgetary cuts] is the proposed out-right elimination of the Social Services Block Grant (SSBG) which is the only source of sustained federal funding to states for Adult Protective Services (APS),” says Benson. Some 37 states use SSBGs to support their APS programs. SSBG is also used by states for a number of other services benefiting older adults including home-delivered meals and case management.

Shortchanging Seniors

Max Richtman, President and CEO of the National Committee to Preserve Social Security and Medicare (NCPSSM) warns that Trump’s budget proposal shortchanges seniors. “In combination with 2017’s tax cuts for the wealthy and the administration’s failure to allow Medicare to negotiate with Big Pharma, the Trump budget shows that his administration is not plugged into the realities of being elderly in America,” he says.

Richtman says that Trump’s budget plan also proposes to eliminate federal grants that help pay for programs under the Older Americans Act, such as Meals on Wheels and home heating assistance for the elderly poor.”

According to Richtman, the 116th Congress gives seniors hope with introduced legislation that would boost Social Security benefits and expand Medicare coverage to include dental, hearing and vision services, changes that an overwhelming majority of Americans support. He calls on Congress to “quickly reject this callous budget proposal — and take decisive action to enhance the well-being of older Americans.

Robert Greenstein, president of the Center on Budget and Policy Priorities, sees Trump’s newly released budget proposal as very troubling, too. “It sharply cuts funding in the part of the budget that invests in future economic growth through education and training, scientific research, infrastructure, and the like,” he says.

“It reverses progress in making affordable health care available to people who don’t have employer coverage or can’t afford private coverage. It cuts basic assistance substantially for families, children, and elderly and disabled people who are in need and struggle to get by. And, it doubles down on policies that take away health care, food, and housing when adults aren’t able to meet a work requirement,” says Greenstein.
“Despite bemoaning deficits, it calls for making the costly 2017 tax cuts — which largely benefit those who already have high incomes and wealth — permanent,” he adds.

Richtman believes that Trump’s 2020 spending proposal serves as a warning of what the administration would do if it were not for the firewall known as the Democratic-led House of Representatives. “These draconian ideas – though rejected by voters in the 2018 mid-terms – remain in the conservative political bloodstream, requiring continued advocacy on the part of seniors and their champions in Congress,” he says.

The release of Trump’s FY 2020 budget program begins the Democratic party’s efforts to retake the White House and Senate in the 2020 presidential election, just over 598 days away. By making major cuts in Social Security and Medicare and turning Medicaid into a state block grant program, Trump is giving Democratic challengers in the 2020 presidential election fodder to create politically-charged themes for ads to turn senior voters against him for seeking cuts in these popular domestic programs.

Herb Weiss, LRI’12, is a Pawtucket writer covering aging, healthcare, and medical issues. To purchase Taking Charge: Collected Stories on Aging Boldly, a collection of 79 of his weekly commentaries, go to herbweiss.com.

New Report Puts Spotlight on the Devastating impact of Alzheimer’s

Published by Woonsocket Call on March 10, 2019

It’s hot off the press. Last Tuesday, the Chicago-based Alzheimer’s Association announced the release of its long-awaited 2019 Alzheimer’s Disease Facts and Figures. The 90-page report is chock full of national and state specific statistics and again puts a spotlight on Alzheimer’s disease, often referred to as the nation’s silent epidemic. Every 65 seconds someone in the United States develops the devastating cognitive disorder. This year, an estimated 5.8 million Americans of all ages are living with Alzheimer’s and related dementia. This number includes an estimated 5.6 million people age 65 and older and approximately 200,000 individuals under age 65 who have younger-onset Alzheimer’s.

Painting a Picture of Alzheimer’s Impact

According to the Alzheimer’s Association, the annual report, first released in 2007, is a compilation of state and national specific statistics and information detailing the impact of Alzheimer’s disease and related dementias on individuals, families, state and federal government and the nation’s health care system. For the third consecutive year, total payments to care for individuals with Alzheimer’s or other dementias is skyrocketing, say the report’s authors. In 2018, these costs were estimated to be over $ 277 billion. This year’s costs are expected to surpass $290 billion, an increase of nearly $13 billion from last year’s figure, according to data gleaned from the latest Facts and Figure report.

Yes, the 2019 Alzheimer’s Disease Facts and Figures report is a must read for congressional staff, state lawmakers, and federal and state officials.

New findings from the report released on March 5, 2019 reveal the growing burden on 16. million caregivers providing 18.5 billion hours of care valued at over $ 234 billion to 5.8 million people with cognitive disorders. By 2050, the new Alzheimer’s Association report projects that the number of persons with Alzheimer’s and other dementias will rise to nearly 14 million, with the total cost of care reaching over $1.1 trillion.

Between 2000 and 2017, the number of deaths from Alzheimer’s disease as recorded on death certificates has more than doubled, increasing 145 percent, while the number of deaths from the number one cause of death (heart disease) decreased 9 percent, says the new data in the 2019 Facts and Figures report. Alzheimer’s disease kills more than breast cancer and prostate cancer combined.

The latest Alzheimer’s Disease Facts and Figures report notes that 83 percent of care provided to the nation’s older adults comes from unpaid caregivers. Specifically, about one in three caregivers (34 percent) is age 65 or older. Approximately two-third are woman. Over one-third of dementia caregivers are daughters, one quarter of these individuals also care for children under age 18. Most caregivers (66 percent) live with the person with dementia in the community.

Of the total lifetime cost of caring for persons with Alzheimer’s and other dementias, 70 percent of these expenses are borne by families, either by out-of-pocket or from the value of unpaid care,” says the Alzheimer’s report.

Taking a Look at Cognitive Assessments

Although the 2019 Alzheimer’s Disease Facts and Figures provides the latest national stats on Alzheimer’s prevalence, incidence, mortality, costs of care, and impact on caregivers, it also takes a close look at awareness, attitudes, and utilization of brief cognitive assessments (obtained by asking questions, observations, input from family and friends, or short verbal or written tests given in a clinical setting), among seniors age 65 and older and primary care physicians.

Although an evaluation of cognitive functioning is a required component of the Medicare Annual Wellness Visit, the report’s findings show that only 1 in 3 seniors are aware these visits should include this assessment.

“While it’s encouraging to see that the vast majority of seniors and physicians understand the value of brief cognitive assessments, we’re still seeing a significant gap in those that actually pursue, perform or discuss these assessments during routine exams,” said Joanne Pike, Dr.P.H., chief program officer for the Alzheimer’s Association in a statement released with this report. “Early detection of cognitive decline offers numerous medical, social, emotional, financial and planning benefits, but these can only be achieved by having a conversation with doctors about any thinking or memory concerns and through routine cognitive assessments.,” says Pike.

While the Alzheimer’s report noted that 82 percent of seniors and 94 percent of physicians believe it is important to have their thinking and memory checked, the findings indicated that just 16 percent of the senior respondents say they receive regular cognitive assessments for memory or thinking issues during routine health checkups, compared with blood pressure (91 percent), cholesterol (83 percent), vaccinations (80 percent), hearing or vision (73 percent), diabetes (66 percent) and cancer (61 percent).

The report’s authors also found a very “troubling disconnect” between seniors and their primary care physicians regarding who they believe is responsible for initiating these cognitive assessments and silence from seniors in discussing their concerns.

According to the report’s nearly all physicians said the decision to assess patients for cognitive impairment is driven, in part, by reports of symptoms or requests from patients, family members and caregivers. Those who choose not to assess cognition cited a lack of symptoms or complaints from a patient (68 percent), lack of time during a patient visit (58 percent) and patient resistance (57 percent) as primary factors.

In addition, the Alzheimer’s report says most physicians welcome more information about assessments, including which tools to use (96 percent), guidance on next steps when cognitive problems are indicated (94 percent) and finally steps for implementing assessments efficiently into practice (91 percent).

The Alzheimer’s Association is working to help educate physicians on best practices for conducting brief cognitive assessments and to ensure that all seniors understand what to expect from an assessment, as well as how to navigate an Alzheimer’s diagnosis and care planning when needed,” said Pike. “As the number of individuals living with Alzheimer’s continues to increase, we need to detect the disease early and give individuals the best opportunity to plan for the future,” she says.

The survey found that while 51 percent of the older respondents are aware of changes in their cognitive abilities — including changes in their ability to think, understand or remember — only 40 percent have ever discussed these concerns with a health care provider, and fewer than 15 percent report ever having brought up cognitive concerns on their own.

Instead, 93 percent of the senior survey respondents say they trust their primary care physician to cognitive testing for thinking or memory problems if needed. Yet, 47 percent of these physicians say it is their standard protocol to assess all patients age 65 and older for cognitive impairment. But, only 26 percent of the senior’s report having a physician ever ask them if they have any concerns about their cognitive function without them bringing it up first.

“The findings indicate there are missed opportunities for seniors to discuss cognitive concerns and problems in the exam room,” said Pike. “We hope the report will encourage seniors and physicians both to be more proactive in discussing cognitive health during the Medicare Annual Wellness Visit and other routine exams,” she says.

Combating Alzheimer’s in the Ocean State

On the heels of the release of Rhode Island’s updated State Plan on Alzheimer’s Disease and Related Disorders by Lt. Governor Dan McKee on February 26th, the released 2019 Facts and Figures reinforces the need to implement the recommendations of the State Plan.

“These facts and figures truly demonstrate the public health crisis we are in both nationally and here in Rhode Island with Alzheimer’s disease,” said Donna M. McGowan, Executive Director with the Alzheimer’s Association Rhode Island Chapter. “We are projecting cases of the disease to increase by 17% in this state by 2025. Having this data helps us to understand the scope of the issue and what we need to do to address peoples’ needs long term.”

“With Medicaid costs rising almost 23% to care for someone with Alzheimer’s, caregivers and families need to be provided resources that they need. Our updated State Plan helps to provide the framework to address some of those concerns,” said McGowan. “I commend our state lawmakers for recognizing how deeply Alzheimer’s disease and related disorders affects our citizens here and for their support in trying to address it with legislation.”

Andrea Palagi, Director of Communications for Lt. Governor Dan McKee, says that there are several Alzheimer’s-related bills being consider by state law makers this year. “It’s the year for Alzheimer’s” she says.

With the newly released 2019 Alzheimer’s Disease Facts and Figures report we hopefully won’t see the state’s updated Alzheimer’s Plan sitting on a bureaucrat’s dusty book shelf.

 For a copy, go to www.alz.org/media/Documents/alzheimers-facts-and-figures-2019-r.pdf.