New Study Looks at Better Ways to Instruct Caregivers

Published in Woonsocket Call on October 2, 2016

A new report released by United Hospital Fund and AARP Public Policy Institute, using feedback directly gathered from caregivers in focus groups, provides valuable insight as to how video instruction and training materials can be improved to help caregivers provide medication and wound care management.

AARP Public Policy Institute contracted with United Hospital Fund (UHF) to organize the discussion groups, which took place in March through December of 2015 and were conducted in English, Spanish, and Chinese. A new report, , released on September 29, 2016, summarizes key themes from the discussions and suggests a list of “do’s and don’ts” for video instruction.

Gathering Advice from Caregivers

In a series of six discussion groups with diverse family caregivers — 20 women and 13 men of varying ages and cultures (Spanish and Chinese) — in New York, participants reported feeling unprepared for the complex medical and nursing tasks they were expected to perform at home for their family member. The participants reported that educational videos lack instructional information and also failed to address their emotional caregiving issues. Stories about poor care coordination came up during the discussions, too.

“These discussion groups gave family caregivers a chance to describe their frustration with the lack of preparation for tasks like wound care and administering medication through a central catheter. But participants also demonstrated how resourceful they were in finding solutions on their own,” said Carol Levine, director of UHF’s Families and Health Care Project and a co-author of the report.

According to Levine, this initiative to study caregiver perspectives on educational videos and materials is an outgrowth of a 2012 report, Home Alone: Family Caregivers Providing Complex Chronic Care, released by UHF and the AARP Public Policy Institute. The findings of this on-line national survey of a representative sample of caregivers noted that 46 percent of family caregivers across the nation were performing complicated medical and nursing tasks such as managing medications, providing wound care, and operating equipment for a family member with multiple chronic conditions. These caregivers felt they were not being adequately prepared by the health care system to perform these tasks and they told researchers that they were often stressed, depressed, and worried about making a mistake. Most of these caregivers had no help at home.

The new caregiving report is an important resource for AARP’s broader national initiative known as the Home Alone AllianceSM which seeks to bring together diverse public and private partners to make sweeping cultural changes in addressing the needs of family caregivers. “The wealth of information we learned from these discussion groups has guided the development of our first series of videos for family caregivers on medication management, and will inform future instructional videos,” said Susan C. Reinhard, RN, PhD, Senior Vice President of AARP Public Policy Institute and co-author of the report. Specific segments of the first series of videos include Guide to Giving Injections; Beyond Pills: Eye Drops, Patches, and Suppositories; and Overcoming Challenges: Medication and Dementia. The videos are on the AARP Public Policy Institute’s website and United Hospital Fund’s Next Step in Care website. Additional video series will focus on topics including wound care, preventing pressure ulcers, and mobility.

In preparation for the discussion group (lasting up to 2 hours and held on different days and locations) ), UHF staff reviewed literature on video instruction and adult learning theory for patients and caregivers and selected several currently available videos on education management and wound care to show to caregivers to stimulate discussion and cull feedback on content and presentation style. Felise Milan, MD, an adult learning theory expert at Albert Einstein College of Medicine, was a consultant to the project.

A New Way of Teaching

For UHF’s Carol Levine, one of the biggest insights of this study was the resourcefulness shown by caregivers in “finding information [about managing medication and wound care] that they had not been provided, creating their own solutions when necessary.” “These are strengths that are seldom recognized,” she says.

“We found that caregivers were eager to learn how to manage medications and do wound care more comfortably for the patient and less stressful for themselves. Providers often use the same techniques they would use to train nursing students or other trainees, and are not aware how the emotional attachment of caregiver to patient affects the tasks, and how adults need learning based on their own experiences, not textbook learning,” says Levine, stressing that providers need more time to work with caregivers to provide follow-up supervision.

Existing teaching videos used for providing information to caregivers were generally found not to incorporate adult learning theory, says Levine, noting that they were intended to teach students, not caregivers. “In watching the videos, the caregivers clearly stated that they wanted to see people like themselves learning to do the tasks, not just a provider demonstrating them. They also didn’t respond well to attempts at humor. For them, these tasks are serious business, and they want information, not entertainment,” she added.

Levine says that she believes that videos and interactive online instruction can be a powerful tool in helping caregivers learn and practice at home. “We encourage other organizations to consider developing videos in the area of their expertise, and we encourage all who communicate with caregivers to look at the list of “Dos and Don’ts” for advice about presenting information in ways that caregivers can best absorb it [detailed in her recently released report].

“However, we strongly believe that good clinical advice and supervision are essential. Videos are not “instead of” they are “along with” clinical care,” adds Levine.

CARE Act Gives More Info to Rhode Island Caregivers

“The report reflects the need to make family caregivers more confident that they have the knowledge and instructions to provide the best possible care of their loved ones,” said AARP State Director Kathleen Connell. “This is why implementation of the CARE (Caregiver Advise, Record, Enable) Act will be so important here in Rhode Island, as it addresses some of the anxiety that accompanies a patient’s hospital discharge.

“In most cases, hospitals do their best to prepare patients for discharge, but instruction has not always been focused on preparing a designated caregiver for medical tasks they may be required to perform. The CARE Act is designed to provide caregivers with the information and support they need. As the report indicates, an instructional video may not always answer all their questions. Like physicians, caregivers feel they should abide by the ‘first do no harm’ approach. And that’s hard sometimes if there is uncertainty that comes from a lack of instruction. Caregivers also are especially tentative about treating wounds and managing medications.

“This can lead to some unfortunate outcomes: Patients can suffer when mistakes are made; caregivers feel increased or debilitating stress; and hospitals readmission rates go up.
“In short, we need to listen to caregivers and all work together to support the work they do.”

For a copy of the caregiver report, go to http://www.uhfnyc.org/publications/881158.

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Whitehouse Pushes for Medicare to Pay for Person-Centered Care

Published on July 11, 2016 in Pawtucket Times

At a June hearing of the U.S. Senate Special Committee on Aging, Senator Sheldon Whitehouse calls for improving care for over 90 million Americans with advanced illnesses like Alzheimer’s disease, cancer, and heart disease. On the day of this Aging panel hearing, the Rhode Island Senator unveiled his legislative proposal, “Removing Barriers to Person-Centered Care Act,” at this panel hearing that would promote better coordination between health care providers, and place greater emphasis on the care preferences of Medicare beneficiaries with advanced illnesses.

The hearing, titled “The Right Care at the Right Time: Ensuring Person-Centered Care for Individuals with Serious Illness,” explored ways to improve the quality and availability of care and examined care models that are helping people with serious illness and their families.

Having Important Life Conversations

The June 23 hearing pulled together witnesses who called for “about the need for families and health care providers to prioritize these important life conversations, so that individuals’ wishes are known and person-centered care is prioritized,” noted U.S. Senator Susan Collins, who chairs the Senate Special Committee on Aging. In her opening statement the Maine Senator called for federal policies to “support efforts to relieve suffering, respect personal choice, provide opportunities for people to find meaning and comfort during serious illness, and – most important – remain in control of their own care.”

Advance care planning conversations to a patients’ physical, emotional, social and spiritual well-being are important in the care of a patient, says Collins. However, studies reveal that less than one-third of physicians have reported that their practice or health care system has a formal program in place to assess patients’ goals or preferences, she notes.

Collins also shared a personal story of a close friend who benefited from the person-centered care she received while she was a patient at the Gosnell Memorial Hospice House in Scarborough, Maine. “Despite her serious illness, because of hospice care her days were filled with visits from friends and families and many joyful moments, and she was surrounded by her family when she died peacefully,” she said.

“I’ve heard from Rhode Islanders about how difficult it can be for patients battling serious, advanced illnesses to get the care and respect they want,” said Whitehouse.

Whitehouse noted that “We can do better by these patients. Because so many of the rules and incentives in our health care system are tied to the payment structure, we should design payment systems that support models of coordinated care that focuses on the full person. Payment systems should reward providers for honoring patients’ own preferences for their care.

As Dr. Atul Gawande, surgeon and author of the New York Times best-selling book, “Being Mortal, mentioned in his testimony, “people with serious, potentially life-limiting illnesses face substantial and increasing suffering, particularly during the last year of life. Medical care today typically exacerbates this suffering, often without any benefit of lengthened life. We have an opportunity to change this.”

“The goal is not a good death. Instead, the goal is to have as good a life as possible all the way to the very end,” say Dr. Gawande.

In her testimony, Amy Berman, a nurse and senior program officer at the John A. Hartford Foundation, who is living with stage IV inflammatory breast cancer stand stressed the importance of palliative care, which is designed to improve the quality of life for patients with serious illness.

“Palliative care is the best friend of the seriously ill,” said Berman, “Studies have shown that when palliative care is added at the beginning of a serious illness that people feel better and live longer.”

Finally, Dr. Kate Lally, Chief of palliative care for the Providence-based Care New England Health System, Medical Director of the Integra Accountable Care Organization, and Assistant Professor of Medicine at Alpert Medical School of Brown University, urged Congress to consider legislation that would improve the quality, not just the quantity, of life of the seriously ill. “I feel blessed to do this work, and to be able to reflect with my patients on the life they have lived, their joys and regrets,” she said. “I feel I am able to share some of the most sacred moments of their life, and be at their side as they consider what is most important to them in their limited time.”

“The healthcare system as a whole, as well as Medicare and Medicaid, need to face growing expectations about how people with serious or terminal illnesses are treated,” said AARP Rhode Island State Director Kathleen Connell. “We are investing in prevention and early treatment and getting better results. Ultimately, however, people will still face serious illness and palliative care. Person-centered care is the proper prescription, and we must strive to make sure that it’s available. We need to be vigilant when it comes to supporting a healthcare environment in which patients with serious illness feel they are well informed and can remain properly in control of their options. And while families still tend to avoid these discussions in advance, when the time is right proper guidance makes a world of difference.

“People form especially strong opinions about decisions made that may prolong their existence, but add little to the quality of lives and, in fact, can prolong suffering,” Connell added. “Conversations on this phase of life are critical and we applaud Senators Collins and Whitehouse for their contribution to this dialogue.”

Legislation to Support New Models of Coordinated Care

The thrust of Whitehouse’s legislative proposal is to promote better coordination between health care providers, and place greater emphasis on the care preferences of Medicare beneficiaries with advanced illnesses.

“Too many Rhode Island Medicare patients battling difficult illnesses are struggling to get the right care at the right time,” said Whitehouse. “We need to break down the barriers between patients and the care they need. Because so many of the rules and incentives in our health care system are tied to the payment structure, we should design payment systems that support new models of coordinated care that are focused on human beings and not some rule or regulation.”

Whitehouse’s legislation would establish a pilot program administered by the Centers for Medicare and Medicaid Services (CMS) made up of twenty “advanced care collaboratives” of affiliated health care providers and community-based social service organizations. Collaboratives would receive a planning grant to assess the needs of the population of patients it would serve; to purchase or upgrade health information technology to facilitate better coordination of care between providers; and to support education and training on documenting and communicating beneficiary treatment preferences and goals.

Once planning is complete, collaboratives would enter a three-year payment agreement with Medicare to provide coordinated, high-quality care for their target patient population. Under the terms of the pilot program, CMS would waive regulations to promote innovative care for patients with advanced illness.

Waivers would be granted to allow Medicare patients to receive hospice care and curative treatment at the same time. Currently CMS’s regulations force patients to choose one or the other for their terminal illness. Patients would be able to also receive Medicare coverage in a skilled nursing home without a consecutive three-day inpatient hospital stay. Under current Medicare rules, patients are often charged for skilled nursing care after they leave an inpatient hospital stay because they were hospitalized for observation rather than admitted to the hospital.

Whitehouse’s legislative proposal would also allow Medicare patients to receive home health services without the requirement that they be homebound. Under current rules, a patient’s condition must have progressed such that there “exists a normal inability to leave home,” denying these services to those who are seriously ill but still mobile. Finally, it would also allow nurse practitioners to sign home health and hospice care plans and certify patients for the hospice benefit. Right now, only doctors can do so, even though nurse practitioners are often the ones administering home health and hospice care. This forms another barrier for patients seeking these services, especially in underserved and rural areas.

According to Tom Koutsoumpas, Co-Chair of the Coalition to Transform Advanced Care’s (C-TAC) Board of Directors, Whitehouse’s legislative proposal is “a critical step forward to achieving high-quality, coordinated care for those with advanced illness. This legislation allows for important innovations in care delivery and removes obstacles to support patients throughout the care continuum.”

Candidates Mum on Social Security

Published in Pawtucket Times on February 8, 2016

Just a week before the New Hampshire primary, scheduled for Tuesday, February 9, AARP releases a new survey, of likely primary voters, that finds Social Security is “one issue that transcends the partisan divide and unites people of all ages.” Both surveyed Democrats and Republicans alike agreed that all presidential candidates should give details as to how they will strengthen or expand Social Security.

In recent presidential debates, moderators focus on the economy, abortion, gun control, immigration and defense, hardly touching on aging issues. The January 29 AARP survey found that voters want more specifics about Social Security. More than nine in 10 New Hampshire primary voters across party lines and age groups say it is important for presidential candidates to lay out their specific plans to make Social Security financially sound for future generations.

Presidential Candidates Dodging Social Security Issue

“New Hampshire primary voters are sending a clear message to the presidential candidates that having a plan to keep Social Security strong is a test of leadership,” said AARP New Hampshire State Director Todd Fahey. “Yet, some presidential candidates are dodging the issue. Our survey confirms New Hampshire primary voters agree if a candidate thinks they’re ready to be president, they should at least be able to tell voters where they stand on Social Security’s future.”

According to AARP, the recent survey of 1,004 likely New Hampshire primary voters, was conducted by telephone from January 12 through January 16, 2016. By design, half of the respondents consist of likely Democratic primary voters (501) and half consist of likely Republican primary voters (503).

The AARP survey is part of nonprofit’s 2016 presidential election issue campaign, “Take A Stand.” In November, the nonprofit launched its its 2016 election accountability campaign initiative which demands on behalf of America’s voters that presidential candidates detail their specific positions on making Social Security financially sound.
The survey findings indicate that nine in 10 New Hampshire primary voters (93 percent Democrat and 92 percent Republican) across party lines and age groups say its important for presidential candidates to lay out a detailed plan to make Social Security financially sound for future generations. Regardless of age, nearly half or more of likely primary voters in each party think this is “very important.”

Also, more than three in four New Hampshire primary voters, across party lines and across age groups, agree that having a plan for Social Security is a basic threshold for presidential leadership. This includes 89 percent of likely Democratic primary voters and 80 percent of likely Republican primary voters.

Moreover, nearly nine in ten or more voters across both parties and age groups believe it is important that the next president and congress take action to make Social Security financially sound. This includes 96 percent of Democratic primary voters as well as 92 percent of Republican primary voters.

“If our leaders don’t act, future generations could see their Social Security benefits cut by 25 percent. That’s a $4,000 to $10,000 per year benefit cut! This survey confirms how critical it is for the next president to have a plan to update Social Security and a commitment to act on that plan,” said Fahey.

On the question of which presidential candidate they expect to vote for on February 9, the AARP survey found that among likely Republican primary voters, Donald Trump is the leading choice for president (preferred by 32 percent) with Marco Rubio preferred by 14 percent and John Kasich preferred by 13 percent However, more than one in four (26 percent) are less certain who will get their vote.

Among likely Democratic primary voters, Bernie Sanders is the leading choice for president (preferred by 59 percent), with Hillary Clinton coming in second (preferred by 33 percent. But one in five (21 percent are less certain who will get their vote.

“AARP said early on in the election cycle that Social Security is too critical a matter – and one affecting far too many people – to allow it to be skimmed over, breezed by, or paid only lip service,” said AARP Rhode Island State Director Kathleen Connell. “The presidential candidates need to take a stand on how they would update Social Security to keep it financially strong and adequate for future generations,” she says.

“Unfortunately, Social Security does not seem to be top-of-mind for candidates nor a discussion that finds its way into the debates,” says Connell, observing that some candidates, including some frontrunners, remain silent on the Social Security issue.
(You can get the very latest news and read what candidates with plans did say at http://www.2016takeastand.org.)

Connell says, “The challenge itself – keeping Social Security strong for the future – gets talked about a lot. You can be sure that when a candidate or elected federal official visits a senior center there will be a pledge (one I happen to believe has been sincere in Rhode Island) to protect Social Security.”

“You don’t hear so much about how. The devil is in the details. And, as the saying goes, ‘It’s complicated,’” adds Connell.

Older Voters Have Political Clout

From inside the Beltway, Darrell M. West, Ph.D., Vice President and Director of Governance Studies at the Brookings Institution, considers voters age 50 and over are one of the most important voting blocs in the nation. “It is a numerous group and these people vote in higher percentages than those who are younger. They often are decisive in elections and candidates have to take their views seriously,” says West.

Connell agrees about the clout of older voters. “The average age for a Rhode Island voter in the 2012 presidential election was 48.6, and that was up from 48.5 in 2010. We know that older Rhode Islanders vote in high percentages and we know that the 50+ population is grown as people live longer. But I have to say that when it comes to Social Security, voters 50 and older are united on the issue; they expect some form of accountability from the candidates on how they would lead on this issue, she says.

Anyone who thinks they’re ready to be President of the United States should be able to tell voters how they’ll keep Social Security strong,” adds Connell. “If our leaders don’t act, future retirees could lose up to $10,000 a year. Every year our leaders wait and do nothing, finding a solution grows more difficult,” she says.

Aging issues impact everyone, says Connell. “When I am asked about ‘aging issues it seems to me to indicate how people often default to a narrow view of ageing. Access to and the cost of healthcare is an issue for all ages. Taxation is an issue for all ages. Affordable housing is an issue for all ages. Protecting pensions is an issue for all ages, even for voters working in their 30s or 40s – as is the issue of Social Security. Our aging population presents a challenge to all Americans and I think you will see 50+ voters becoming increasingly liked-minded making more and more of an effort to be heard.”

Rhode Island General Assembly Seeks to Assist State’s Caregivers

Published in Woonsocket Call on June 14, 2015

With the graying of America’s population, the profile of the typical family caregiver has changed, says a new report released by the National Alliance for Caregiving and AARP. The findings trouble aging advocates who warn that as care givers age they require more long term care support and community based care services.

Taking a Look at Today’s Caregiver

The report, “Caregiving in the United States 2015,” tells us that the “typical” family caregiver is a 49-year-old woman who takes care of a relative, caregivers on the whole are becoming as diverse as America’s population.

According to the 81 page report, today’s family caregiver also provides unpaid care for at least 21 hours a week, and has been care giving for an average of 5-1/2 years.  These individuals expect to continue providing care to their loved ones for another 5 years. Nearly half of these higher-hour caregivers report high emotional stress (46 percent), too.

Men, often stereotyped as failing to take on caregiving responsibilities, currently represent a whopping 40 percent of family caregivers, also providing an average of 23 hours a week being a caregiver to their loved ones, adds the report.

The study’s data indicates that today nearly a quarter of the nation’s caregivers are millennials between the ages of 18 and 34 and they are equally likely to be male or female. On the other end of the spectrum, 75 and older caregivers are typically the sole support for their loved one, providing care without paid help or assistance from relatives and friends.

Meanwhile, caregivers, with an average household income of $45,700, tell the researchers that they are not only emotionally strained, but financial strained as well. These higher-hour older caregivers report difficulty in finding affordable care giving services, such as delivered meals, transportation, or in-home health services, in their community, for themselves and their loved ones.

The report also notes that “Caregivers of a close relative—like a spouse or a parent—who are likely to provide care for 21 hours or more, indicate that being noted as a family caregiver in the medical records of the care recipient would be helpful in managing their caregiving responsibilities.”

Finally, the study’s findings indicate that caregivers who live more than an hour away from their care recipient also report higher levels of financial strain (21 percent), perhaps because 4 out of 10 long-distance caregivers report the use of paid help (41 percent).

Report Calls for Supporting Caregiver Needs

As previous AARP research has shown, we’re facing a caregiving cliff,” said Dr. Susan Reinhard, senior vice president and director, AARP Public Policy Institute; and chief strategist, Center to Champion Nursing in America. “By mid-century, there will be only three family caregivers available for each person requiring care. That means, to avoid putting them at higher risk as they age, we need to provide support for existing caregivers who are underserved by the current long-term services and support system.”

We’re especially concerned that not enough is being done to support family caregivers in the public or private sector as they age,” says Gail Gibson Hunt, president and CEO of the National Alliance for Caregiving. “There’s a double-edged sword when we fail to support caregivers, because we put both the caregiver and the care recipient at risk,” she warns.

Hunt observes, “Rhode Island is a unique state in that it has the highest percentage of persons over age 85. The data in this report speaks to some of the challenges of a graying population, particularly the needs of caregivers who are 75 or older.”

“We know from the data that the ‘typical’ caregiver over 75 is caring for a spouse or close relative, and spends about 34 hours a week providing care. This can be extremely challenging for an older person who may be managing their own mobility and health issues, as they help a loved one with basic needs like bathing or everyday tasks like grocery shopping,” said Hunt.

Hunt says, “Rhode Island has an opportunity to continue supporting older people and their caregivers, who are also growing older and need care.”

Lawmakers Posed to Pass Caregiver Law

           In June 4th, the Senate passed SB 481 A, the CARE (Caregiver Advise, Record  and Enable) Act, to provide caregivers with timely information to allow them to provide post-discharge care.  The House Chamber passed its measure, HB 6150 Sub A on June 10th.  Both chambers must now approve the legislation from the opposite chamber.  If passed, they go to the Governor for approval.  This legislation will be invaluable to the state’s 148,000 caregivers who provided 142 million hours of care for loved ones.

“We are delighted that – upon the CARE Act becoming law – Rhode Island will join seven other states that  have enacted CARE Act legislation, with bills in three other states awaiting their respective Governor’s signatures,” said AARP State Director Kathleen Connell.

“Together, AARP worked with a strong coalition of stakeholders, as well as the House and Senate sponsors, Representative Eileen Naughton, and Senator Gayle Goldin, and the members of the House’s Health, Education and Welfare Committee and the Senate’s Health and Human Services Committee,“ notes Connell.

“The passage of the CARE Act dovetails with the release of “Caregiving in the United States 2015,” which  presents a portrait of unpaid family caregivers today. It specifically addresses vulnerable groups of caregivers who face complex, high burden care situations. They tend to be older caregivers, who had no other option but to take on caregiving duties.” adds Connell.

Connell says, “It is sobering to conclude that in Rhode Island, with its above-average older population, we risk seeing more and more of old sick people caring for older sicker people. Clearly, that’s not a good thing and it needs addressing sooner than later.”

“One thing we noticed as the CARE Act made its way through the General Assembly was that a number of lawmakers shared their own personal caregiving stories. Some issues are harder to personally identify with than others, but when it comes to caregiving, it’s good to know we have this kind of attention. The report adds data and statistics that should help frame solutions,” says Connell.

 

Director Charles Fogarty, who oversees the state’s Division of Elderly Affairs (DEA), sees the value of AARP’s report highlighting the “critical role” of caregivers taking care of their loved one.  “Family support is essential to allow seniors to stay in their own homes and live as independently as possible, he says, noting that federal funds allows DEA to administer respite and care giver support programs.

“As the baby boomer generation ages, DEA will continue to seek out resources that provide support to family members who care for their loved one,” says Fogarty.

The CARE Act can provide assistance to those tirelessly care for their aged or disabled loved ones.   Kudos for the Rhode Island General Assembly giving them the tools to do a better job.

Herb Weiss, LRI ’12 is a Pawtucket-based writer covering aging, health care and medical issues.  He can be reached at hweissri@aol.com.

 

Study Shows Meal Deliveries Positively Benefit Seniors

Published in Woonsocket Call on March 22, 2015

In 2013, Dr. Kali Thomas, an assistant professor at Brown University’s Center for Gerontology and Healthcare Research, published a study that found home delivered meals can keep persons age 60 and older at home, allowing them to age in place.  The study’s data also indicated that some states would experience cost savings if they expanded meals on wheels because that could delay a Medicaid recipient’s entry into costly nursing home care.

The “More Than a Meal” pilot research study, conducted by Thomas, was released on March 2, 2015 the Alexandria, Virginia-based Meals on Wheels America, the oldest and largest national group representing over 5,000 community-based senior nutrition programs. The gerontologist found benefits far beyond basic nutrition identified by her earlier 2013 study — health and psychological benefits, too, particularly for those seniors who live alone.

Details of Groundbreaking Research Study

Thomas, contracted by Meals on Wheels America with funding provided by AARP Foundation, designed and executed the 15-week pilot study, involving over 600 older participants, in eight sites around the country, including the Ocean State.  Study participants either received personally delivered fresh meals daily, or weekly bulk deliveries of frozen meals, or just simply remained on a waiting list.

The Brown University researcher found those living alone who received meals showed statistically significant reductions in feelings of isolation, an effect that was greater if they received meals daily rather than weekly.  They also felt significantly less lonely, were less worried about staying in their homes, and said they felt safer. Those also receiving meals experienced fewer falls and hospitalizations.

Thomas said that based on her personal experience as a driver for Meals on Wheels of Rhode Island and as the family member of a meals recipient (her 98-year old grandmother), she was not at all surprised to see the positive benefits she observed anecdotally emerge as significant in a rigorous research study.

Elle Hollander, President and CEO on Wheels America, notes that her members have “faced tough choices forced by limited funding, rising costs, unprecedented demand and need, and increasingly for-profit competition.”  Hollander says, “We now have the research-backed evidence that confirms what we’ve all know for decades anecdotally through personal experience: that Meals on Wheels does in fact deliver so much more than just a meal.”

AARP State Director Kathleen Connell agrees.  “It really has been no secret that home-delivered meals are a critical for the older population, as well as the disabled. With  Kali Thomas’s earlier Brown data released in 2012 in our award-winning senior hunger documentary Hungry in the West End, the newest research reinforces what Thomas said in film: the nutritional benefits and relief from food preparation allows people to live in their homes longer and to stay healthier. And so, there are long term healthcare benefits as well as savings to the state if the investment in home-delivered meals delays someone’s transition from independence or home-based care into a Medicaid-supported nursing facility.”

A Call for More State Funding

Heather Amaral, Executive Director of Meals on Wheels of Rhode Island agrees with the benefits of visiting volunteers to the recipients, but stressing that the volunteer benefits, too, from the bond that develops. “There are many studies that show volunteering is good for your health and spirit, she says.

Amaral expresses pride that Rhode Island was selected as one of eight pilot sites in the study.  “This study proves what we’ve observed through the years—Meals on Wheels deliveries keeps people out of nursing homes and in their own homes longer,” she says.

According to Amaral, in 2014 Meals on Wheels of Rhode Island’s Home Delivered Meals program provided 316,524 meals to 2,298 individuals.  Over the years she has seen federal funding remain stagnant, while state funding has declined.  Last year’s budget allocated $200,000 to Meals on Wheels, down from $530,000 that was allocated by the General Assembly in 2006.   But, Governor Raimondo’s submitted budget does reinstate $ 330,000 more in funding, if approved by the Rhode Island General Assembly, she says.

Clearly, Governor Gina Raimondo recognizes the importance of Meals on Wheels as she begins to reshape Rhode Island’s long-term care continuum.  The Governor states, “Programs like Meals on Wheels are important investments. These programs are one of the strategies in our toolbox to keep people healthy and in their own homes. Particularly as we work to reinvent Medicaid to support better health outcomes and provide better value to taxpayers, we will continue to support programs like Meals on Wheels that help our most vulnerable seniors stay in their homes and in the community.”

The Rhode Island General Assembly must not be penny-wise and pound foolish.  Support the Governor’s budget to ratchet up funding for Meals on Wheels.  It is a sound policy move to put the breaks to spiraling Medicaid costs, by making the system more efficient and rooting out fraud and waste.   We must balance the State’s limited budget funds to keep older Rhode Islanders at home as long as possible.  But, if nursing home care is need, the Rhode Island General Assembly must allocate the necessary Medicaid funding to provide efficiently delivered quality of care.

Herb Weiss, LRI ’12 is a Pawtucket-based writer who covers aging, health care and medical issues.  He can be reached at hweissri@aol.com.

 

It Takes a Village to Age in Place

Published in Senior Digest, February 2015

The simple act of joining his good friend, Reverend James Ishmael Ford, of the First Unitarian Church of Providence, for a quick cup of coffees piqued Cy O’Neil’s curiosity and led him on a journey to learn more about a new care option popping up around the nation, one that allows aging baby boomers to age in place right in the comfort of their home.

During their coffee chats, Ford, a native of California, began talking about his upcoming retirement, planning to return to his home state to be near his children.  But, he stressed the importance that his new California community must be located near a village.

O’Neil was intrigued and began Googling for information on specific villages, one was the The Beacon Hill Village.  He quickly got the concept.  Villages are created by membership-driven grass-roots organizations, with volunteers and paid staff, who coordinate access to affordable services, transportation, health and wellness programs, home repairs, social and educational activities, and other day-to-day needs enabling older persons to remain connected to their neighborhood community throughout the aging process.

According to Village to Village Network, there are now over 120 villages operating across the nation, in Canada, Australia and the Netherlands, with over a 100 additional Villages being developed.

Like many aging baby boomers, sixty-five-year old O’Neill did not want to leave his comfortable home in his later years, but stay put in his long-time Oakhill neighborhood.  The Village on Providence’s Eastside might just be the way to assist neighbors working together to successfully keep each other right in their homes, far away from assisted living facilities or nursing homes.

Creating Providence Village

Last February, O’Neill and several friends, over pot luck dinners, began  brainstorming how the Village concept could be brought to the Ocean State. One of the oldest Village organizations, The Beacon Hill Village, was established in Boston in 2001.  Why couldn’t the successfully run, The Beacon Hill Village, be replicated right here in Rhode Island, they asked.

Three pot luck dinners along with a larger event that drew over 30 attendees, resulted in a group of nine people who decided to launch an effort to create what they call the Providence Village.  This group consisted of a writer, editor, a geriatrician, college educators and administrators, people with business backgrounds, and artists.

“Rhode Island is the only state that does not have a village yet,” quips O’Neil.  There have been other attempts to bring The Village concept to Rhode Island but the failed,” he believes.

O’Neil, Boston College’s associate director for long-range planning and capital, notes that the Providence Village is still in the exploratory phase, gathering information.  The Steering Group is reaching out to Eastside Community in Providence through a survey on its website (http://providencevillageri.org/take-our-survey/) to identify the types of programs and services needed and identifying potential partners.  When completed, the Steering Group will move the organization into development phase where “serious planning begins to take place,” adds O’Neil.  At this phase, member benefits will be determined, organizational partners identified, and an operational, business and marketing plan developed.  .

“So far our responses have been very positive,” observes O’Neil.  “We’re energized by these responses and are very committed to rolling up our sleeves to make Village Providence work,” he says, noting that the Steering Group wants to create more opportunities to get more people involved to make Providence Village a reality.

Thoughts From Steering Group Members

Pat Gifford, MD, a retired geriatrician who is certified in hospice and palliative care who has practiced for over 30 years, brings her medical expertise and understanding of aging issues to the Steering Group.  The sixty-six year old Laurel Mead resident sees the village movement targeted to aging baby boomers.  “The Village is not a social service agency to take care of frail people,” she notes, but a “way of organizing people to take care of each other, often involving volunteering and a measure of paying-it-forward.”

Gifford, who brings extensive experience about the Village movement to the Steering Group, would like to write and teach on health and wellness issues for the members of the Providence Village, especially providing support to self-supportive groups for those with chronic diseases.  “It’s up to the Board of Village members if they are interested in these efforts,” she says.

According to Gifford, the key to Providence Village being a success is garnering strong grass roots support.  “It is important for people to go to visit our web site and complete our survey, so that we can understand the needs and desires of our unique community,” she adds.

A Final Note…

“The village movement is one of many approaches to senior living that AARP encourages,” said AARP State Director Kathleen Connell. “It’s impractical for many people to simply remain in the family homestead forever. It’s not ‘Aging in Place’ if the place isn’t right for you. Most people talk about downsizing as if it is all there is to be said about housing options. It’s not true, and we’re happy to see growing awareness that less house to maintain is really only part of the solution.

“One’s house and one’s home are two different things. You can choose another house, but people are most comfortable when they make a new home in an environment where they feel comfortable and live in proximity to the services and support they require as they age. AARP calls these livable communities and they are aligned with the thinking behind the village movement.

“Rhode Island does not have unlimited space to build new retirement communities. We need a balance of traditional senior housing development and the creative thinking and the adaptive use of existing housing.“

For more details about Providence Village go to http://providencevillageri.org/.

Herb Weiss, LRI ’12, is a Pawtucket writer covering aging, health care and medical issues.  He can be reached at hweissri@aol.com.

 

Santaniello Gets AARP’s Most Prestigious Award

Published in Pawtucket Times, December 6, 2013

Look for hundreds of AARP members to gather today at this year’s Andrus Awards noon luncheon at the West Valley Inn, in West Warwick, to recognize their own, at the aging group’s annual Andrus Awards ceremony.

Norma Santaniello, 81, gets the Rhode Island AARP Chapter’s most prestigious volunteer award for age 50 and older volunteers, that is the 2013 AARP Rhode Island Andrus Award for Community Service. It’s the aging advocacy groups most visible state volunteer award for community service

“This award acts as a symbol to the public that we can all work together for positive social change,” states . “AARP has long valued the spirit of volunteerism and the important contributions volunteers make to their communities, neighbors, and the programs they serve.”

Connell says the North Providence resident has worked with the nonprofit’s chapters and community partners, reinforcing the organization’s strategic priorities and being a voice to the public. “She is a strong advocate for community service and works with the volunteers on projects such as the RI Community Food Bank and at various health and fitness fairs.”

Santaniello follows a very distinguished group of award recipients. Previous Andrus Award winners are Sarah Gauvin, Virginia Tierney, Anna Prior, Ann Gardella, Melvoid Benson, John O’Hara, Rita Wood, Ed Drew, Richard Ryan, Jorge Cardenas and Catherine Graziano

The December 6 Andrus Awards Luncheon is very festive and upbeat regardless of “what is going wrong in the world or otherwise leaving us feeling unsettled,” says Connell, noting that she looks forward to attending this annual event because “it is a time to acknowledge volunteerism and public service on many levels.

AARP Rhode Island’s Andrus Awards Luncheon allows the organization to recognize people for their community service throughout the year. “It is indeed an honor to know each and every one present, along with many who are absent,” notes Connell, stressing that they represent an “even greater network of volunteers and advocates who carry on Ethel Percy Andrus’s dream of a productive and fulfilling life for people whose knowledge, passion and energy remains indispensable in our neighborhoods and in towns and cities all across our great state.”

AARP Award Recognizes Ethel Percy Andrus’s Advocacy

According to Connell, her group’s top award is given to recognize and honor AARP founder Ethel Percy Andrus, she “embodies all that AARP stands for. Once Andrus retired in 1944 from her position as Los Angeles high school principal in 1944, she stepped into a new career, one that ultimately would have a major impact on the nation. “She became an activist and organizer on behalf of other retirees and older Americans, fighting to improve their financial security, their health care and other services that they need, says AARP Rhode Island’s State Director.

The former long-time educator, who served as the first woman high school principal in California, never married and was childless, had retired so that she could care for her mother, who was in poor health. Despite decades of working, Andrus was entitled to a pension of just $60 a month, around $750 in today’s dollars. She had enough money to financially survive, but she realized that many of her older colleagues were not so fortunate, living off incredibly small pensions.

For Andrus, her commitment to become a change agent for society was fueled by learning the indignity faced by a former colleague due to lack of retirement income was forced to live in a chicken coop in a small town outside Los Angeles. This led to Andrus to become active in the California Retired Teachers Association and in 1947 she founded the National Retired Teachers Association. This group would ultimately lead to the creation of AARP in 1958, now considered the nation’s largest aging advocacy group.

Connell notes that Andrus worked to shift the nation’s perception of aging. As she once explained, “Old age is not a defeat, but a victory, not a punishment, but a privilege.” The aging advocate urged her fellow retirees “to be as active as possible — to pursue new passions, to travel and see the world, and, most of all, to continue to use the skills and experience developed over a lifetime to serve their communities.”

The Ojai, California resident continued to work long hours and travel to promote AARP until her death from a heart attack at age 83 in 1967, the same year that membership in AARP reached 1 million. Today, AARP’s membership serves over 40 million older people.

Like the AARP Rhode Island Chapter, recipients across the nation are to receive the distinguished award, named for Andrus, recognizing their ability to enhance the lives of AARP members and prospective members, improve their community or for which the work was performed, and the inspiration they give other volunteers.

Empowering Seniors

For 29 years, juggling a demanding job that provided administrative support for Providence School Principals combined with raising two young children left Santaniello with little time after hours to join community organizations. One year shy of age 60, she would take retirement, noting that “I had worked long enough, had a pension, and just wanted to do different things.”

Santaniello remembers her volunteer work began when she was invited to join the State Legislative Committee some 18 years ago. The retired Providence School Department employee, joined the AARP North Providence Chapter taking the helm of its Legislative Committee, ultimately being appointed to AARP Rhode Island’s State Legislative Committee. In these positions she has written numerous letters to Congressional lawmakers on aging advocacy issues and has testified many times on Smith Hill before the General Assembly on a multitude of aging issues, including care giver issues, long-term care, Social Security, and fair market pricing for prescription drugs.

As the years rolled by, Santaniello would continue to put her energy into her AARP duties. But, she also would find time to teach fifth graders about religion at her local parish, the Presentation of the Blessed Virgin Mary in North Providence, serve as a board member for Marieville’s Community Police program and to even became certified to be on FEMA’s Emergency Response Team in the Ocean State. That’s not all.

Santaniello is actively involved in the Department of Elderly Affairs’ Senior Help Insurance program, assisting seniors to get the best insurance plan for their specific needs. “Right now I am very concerned about United Health Care dropping physicians,” she says.

Besides receiving the Andrus Award, Santaniello notes she has also accumulated a few others over the years. She received the AARP Rhode Island’s Outstanding Team member Award in both 2000 and 2004 and the nonprofit group’s Life Time Chapter Education Award in 2010.

With today’s luncheon ceremony in her thoughts, Santaniello admits, “it’s quite an honor, getting the highest award that AARP can bestow.” She seems amazed that one should get this award for just doing something you like. “Obviously, if I did not enjoy what I was doing I would not have been around so long,” she says.

As to staying active in her early eighties, Santaniello hopes that her older friends will find volunteer activities that are worthwhile to invest their time and energy. “We just have to know what is going [in the world] or we will fade away, she said.

Like Santaniello, older Rhode Islanders might consider following her very active life style. Become a volunteer in your community. According to the Washington, DC-based Corporation for National & Community Service, a growing body of research details that older volunteers have lower mortality rates, less depression, fewer physical limitations and higher levels of well-being. Older volunteer’s can tackle community problems, making the world a better place for their children and grandchildren. Being a volunteer might just well be your fountain of youth.

At today’s Andrus Awards noon luncheon, here are other AARP members who will be recognized for the 2013 Volunteer Leader of the Year: Advocacy; Doris Haskins (Advocacy): Julia Valles (Community Presence); Lourdes Pichardo (Maria Matias Award); Susan Sweet (Advocacy Education); and Jorge Cardenas (Volunteer Engagement).

Herb Weiss, LRI ’12, is a Pawtucket writer who covers aging, health care and medical issues. He can be reached at hweissri@aol.com.