Questions Raised About the State’s New Independent Provider Program

Published in the Woonsocket Call on July 15, 2018

In the waning days of the 2018 legislative session, the Rhode Island General Assembly passed legislation (S 2734 Sub A, H 7803 Sub A) that establishes in the Ocean State the “Independent Provider” (IP) model of at-home care, which allows consumers to hire and manage caregivers of their own choice while the state takes on certain responsibilities, such as setting caregivers’ wages, qualification standards and hours. With Gov. Gina M. Raimondo’s signature, the legislation became law on June 29th.

The enacted legislation is backed by the Rhode Island Campaign for Home Care Independence and Choice, a coalition that includes the Senior Agenda Coalition, RI Working Families Party, RI Organizing Project, District 1199 SEIU New England, RI AFL-CIO, Economic Progress Institute and the RI Chapter of the National Organization of Women (NOW). But, although on the losing side of the legislative debate the Rhode Island Partnership for Home Care continues to express its concern about the impact on the delivery by IPs to seniors and persons with disability.

Overwhelming Support on Smith Hill

The health care legislation, sponsored by Senate Majority Whip Maryellen Goodwin (D-Providence) and Rep. Christopher R. Blazejewski (D-Providence), easily passed both the House and Senate Chambers. The Senate Committee on Labor unanimously passed the measure by a 9-0 vote. By a count of 33-0, the legislation easily passed on the Senate floor. Meanwhile, in the other chamber, the House Committee of Finance put its stamp of approval on the measure by a vote of 13-0, with the legislation ultimately passing of the House floor by a vote of 60-11. But, because the House amended the bill (in committee and on the floor), it had to come back to the Senate for consideration again. The Senate vote on the revised legislation was 28-3.

In a statement announcing the new law, Goodwin and Blazejewski, say “By increasing both availability and quality of at-home care options, the new law’s ultimate goal is to move Rhode Island toward greater use of care in the community rather than in nursing facilities, since at-home care is both more comfortable and satisfying for consumers and less expensive than nursing facilities.”

“Presently, Rhode Island ranks 42nd in the nation in terms of investment in home care. Ninety percent of older Americans prefer home care. Not only is it more comfortable for seniors, it’s more cost-effective, as we’ve seen in states like Massachusetts. High-quality home care is what people want, and it saves money. I’m proud to support this effort to help make excellent home care available to more Rhode Islanders,” said Goodwin.

Adds, Blazejewski, “There is little question that people prefer to stay in their homes as long as possible. Particularly now, as the over-65 population in our state is rapidly expanding, Rhode Island must shift more of our long-term care resources toward supporting home care. Our legislation will help provide more options for home-based services, enhance access to them and establish standards that assure high-quality care.”

Hiring, Finding and Managing a Caregiver

Currently around 77 percent of Medicaid funding for long-term services and supports goes to nursing facility care rather than community-based care. Those who use community-based care generally go through agencies or find, hire and manage a caregiver on their own. This bill would create a third option.

Under the Independent Provider model, which has been in place in Massachusetts since 2008, consumers would still be the direct employer who determines when to hire or fire an employee, but the state would take on responsibilities for maintaining a registry of qualified caregivers, and would set parameters such as rates, qualifications and hours.

While the new law stipulates that they are not employees of the state, it would give home care workers the right to collectively bargain with the state over those parameters. Allowing them to organize would ensure that this otherwise dispersed workforce has a unified voice and a seat at the table to tackle the issues facing Rhode Island’s long term services and supports system, said the sponsors.

Consumers in states with independent provider models report higher levels of client satisfaction and autonomy, received more stable worker matches, improved medical outcomes, and reduced unmet need with agencies delivering fewer hours of care relative to the needs of the consumer.

In testimony supporting the health care legislation, Director Charles J. Fogarty, of Rhode Island’s Division of Elderly Affairs (DEA), told lawmakers that the health care legislation supports two goals of DEA, first it would enable elderly and disabled Rhode Islanders who are medically able to stay at home and second, it would address Rhode Island’s direct service provider workforce shortage.

Fogarty said it’s critical for older adults and people with disabilities to have access to the quality of care that is right for them. “In some cases, care from an independent provider they know and trust will best meet their needs to remain independent. In other cases, a home care agency will be the right fit. And for some, particularly those with complex medical needs, our quality nursing homes are the right option,” he said.

When quizzed asked about The Rhode Island Health Care Association’s position, Virginia Burke, President and CEO, recognized the value of home care in the state’s long-term care continuum but stressed that residents in the state’s nursing facilities “are too sick or impaired to mange at home.” She said, “Our only concern with this proposal is the suggestion that it could drain Medicaid funding from the frailest and most vulnerable among our elders in order to pay for a new Medicaid service. Surely our elders deserve good quality and compassionate care in all settings.”

Calling for More Education, State Oversight of IPs

While most who testified before the Senate and House panel hearings came to tout the benefits of bringing IP caregivers into the homes of older Rhode Islanders and persons with disabilities, Nicholas A. Oliver, Executive Director of the Rhode Island Partnership for Home Care, sees problems down the road and calls the new policy “duplicative and costly.”

In written testimony, if the legislation is passed Oliver warns that Rhode Island will be authorizing untrained and unsupervised paraprofessionals to deliver healthcare to the state’s most frail seniors without Department of Health oversight, without adherence to national accreditation standards for personal care attendant service delivery and without protections against fraud, waste and abuse.

Furthermore, his testimony expressed concern over the lack of oversight as to the quality of care provided by IPs to their older or disabled clients. Although the legislation called for supervision from the Director of Human Services (DHS), this state agency does not have the mandated legislative authority to investigate IPs to ensure that patient safety is met and the recipients of care are protected against harm in their homes. Nor does it require daily supervision for adherence to the patient’s authorized plan of care, he says, noting that is a requirement for licensed home health and hospice agencies.

Oliver observes that the legislation does not require IPs to receive the same level of intensive training that Certified Nursing Assistances (CNAs) receive from their home health care and hospice agencies. While the state requires all CNAs to complete 120 hours of initial training, pass a written and practical examination, become licensed by the Department of Health and maintain a license by completing a minimum of 12 hours of in-service training annually, the legislation only requires IPs to take three hours of generalized training and no continuing in-service training is required.

CNAs deliver the same personal care attendant services as the IPs but have a specific scope of practices that they must follow as regulated by the Department of Health and their licensure board while IPs do not have these requirements, says Oliver.

Finally, Oliver says that “to ensure quality of care [provided by home care and hospice agencies], CNAs are supervised by a registered nurse (RN) that is actively involved in the field and who is available to respond to both the patient’s and the CNA’s needs on-demand to reduce risk of patient injury, harm or declining health status and to reduce risk of CNA injury, harm or improper delivery of personal care.” IPs do not have this supervision., he says.

Safe guards are put in place by home health and hospice agencies to ensure the safety of patient and direct care staff, says Oliver, noting that these agencies are nationally accredited by The Joint Commission, the Community Health Accreditation Program (CHAP) or the Accreditation Commission for Health Care (ACHC) in partnership with the Department of Health for compliance of state and federal rules and regulations, as well as national clinical standards for personal care attendant service delivery.

With the Rhode Island General Assembly bringing IPs into the state’s health care delivery system, the state’s Executive Office of Health and Human Services, granted authority by the legislation to develop the program, might just consider establishing a Task Force of experts to closely monitor the progress of the new IP program’s implementation to ensure that quality of care is being provided and to make suggestions for legislative fixes next year if operational problems are identified. Unanticipated consequences of implementing new rules and regulations do happen and every effort should be state policy makers that this does will not happen in Rhode Island with the creation of the new IP program.

To watch Oliver talk about the Rhode Island Partnership for Home Care’s opposition to the enactment of IP legislation that would increase state involvement in the home care sector, go to http://m.golocalprov.com/live/nicholas-oliver.

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AARP Gives Us a Snapshot of the Millennial Caregiver

Published in the Woonsocket Call on June 3, 2018

AARP’s latest caregiver report places the spotlight on the Millennial generation, those born between 1980 and 1996, ages 22 to 38 in 2018. “Millennials: The Emerging Generation of Family Caregivers,” using data based primarily from the 2015 Caregiving in the U.S. study, notes that one-in-four of the nearly 40 million family caregivers in America is now a Millennial.

The 11-page report, released by AARP’s Public Policy Institute on May 22, 2018, takes a look at the Millennial’s generational experiences and challenges as they support an aging parent, grandparent, friend or neighbor with basic living and medical needs.

“Caregiving responsibilities can have an impact on the futures of younger family caregivers, who are at a particular time in their lives when pivotal social and professional networks are being formed,” said Jean Accius, PhD, Vice President, AARP Public Policy Institute, in a statement with the report’s release. “We must consider the unique needs of millennial family caregivers and ensure that they are included in programs and have the support they need to care for themselves as well as their loved ones,” she says.

The Millennial Caregiver

According to the AARP report, Millennial caregivers are evenly split by gender but also the most diverse group of family caregivers to date, notes the report. More than 27 percent of the millennial caregivers are Hispanic/Latino, or 38 percent of all family caregivers among Hispanic/Latinos.

The AARP report notes that Millennials are the most diverse generation of family caregivers when compared to other generations. Eighteen percent are African-American/Black, or 34 percent of all African-American/Black family caregivers. Eight percent are Asian American/Pacific Islander, or 30 percent of all the AAPI family caregivers, says the report, noting that less than 44 percent are white, or 17 percent of all white family caregivers. Finally, twelve percent self-identify as LGBT, which makes them the largest portion of LGBT family caregivers (34 percent) than any other generation.

About half of the Millennial caregivers (44 percent) are single and never married while 33 percent are married. If this demographic trend continues a smaller family structure will make it more likely to have a caregiver when you need one.

More than half of the Millennial caregivers perform complex Activities of Daily Living (ADLs), including assisting a person to eat, bath, and to use the bathroom, along with medical nursing tasks, at a rate similar to older generations. But, nearly all Millennials help with one instrumental activity of daily living including helping a person to shop and prepare meals.

While Millennial caregivers are more likely than caregivers from other generations to be working, one in three earn less than $30,000 per year. These low-income individual’s higher out-of-pocket costs (about $ 6,800 per year) related to their caregiving role than those with higher salaries, says the AARP report.

As to education, Millennial caregivers have a high school diploma or has taken some college courses but not finished. But, one in three have a Bachelor’s Degree or higher.

According to the AARP report, 65 percent of the Millennial caregivers surveyed care for a parent or grandparent usually over age 50 and more than half are the only one in the family providing this support. However, these young caregivers are more likely to care for someone with a mental health or emotional issue — 33 percent compared to 18 percent of older caregivers. As a result, these younger caregivers will face higher emotional, physical and financial strains.

The AARP report notes that Millennials are the most likely of any generation to be a family caregiver and employed (about 73 percent). Sixty two percent of the boomers were employed and were caregivers. On top of spending an average of more than 20 hours a week (equivalent to a part-time job) in their caregiving duties, more than half of the Millennials worked full-time, over 40 hours a week. However, 26 percent spend more than 20 hours of week providing family care.

Although most Millennial caregivers seek out consumer information to assist them in their caregiving duties, usually from the internet and from a health care professional, the most frequent source of information is from other family members and friends.

While Millennial caregivers consume information at a higher rate, most (83 percent) want more information to supplement what they have. The tope areas include stress management (44 percent) and tips for coping with caregiving challenges (41 percent).

A Changing Workforce

Millennials are encountering workplace challenges because they are less understood by supervisors and managers than their older worker colleagues. More than half say their caregiving role affected their work in a significant way, says the AARP report. The most common impacts are going to work late or leaving early (39 percent) and cutting back on work hours (14 percent).

As we see the graying of America, it makes sense for employers to change their policies and benefits to become more family friendly to all caregivers, including Millennials, to allow them to balance their work with their caregiving activities.
It’s the right thing to do.

To read the full report, visit: https://www.aarp.org/ppi/info-2018/millennial-family-caregiving.html.

Visit http://www.aarp.org/caregiving for more resources and information on family caregiving, including AARP’s Prepare to Care Guides.

2050 and the Caregiver Dilemma

Published in the Woonsocket Call on April 22, 2018

The year 2030 marks an important demographic turning point in U.S. history according to the U.S. Census Bureau’s 2017 National Population Projections, released last month. By 2030, older people are projected to outnumber children. In the next twenty years, when these aging baby boomers enter their 80s, who will provide informal caregiving to them.

Almost three years earlier, in a July 2015 report, “Valuing the Invaluable: 2015 Update Undeniable Progress, but Big Gaps Remain,” the AARP Public Policy Institute warned that fewer family members will be around to assist older people with caregiving needs.

According to AARP’s 25-page report, coauthored by Susan C. Reinhard, Lynn Friss Feinberg, Rita Choula, and Ari Houser, the ratio of potential family caregivers to the growing number of older people has already begun a steep decline. In 2010, there were 7.2 potential family caregivers for every person age 80 and older. By 2030, that ratio will fall sharply to 4 to 1, and is projected to drop further to 3 to 1 in 2050.

Family caregivers assisting relatives or close friends afflicted with chronic, disabling, or serious illness, to carry out daily activities (such as bathing or dressing, preparing meals, administering medications, driving to doctor visits, and paying bills), are key to keeping these individuals in their homes and out of costly nursing facilities. What is the impact on care of aging baby boomers when family caregivers no longer provide assistance in daily activities?

“In 2013, about 40 million family caregivers in the United States provided an estimated 37 billion hours of care to an adult with limitations in daily activities. The estimated economic value of their unpaid contributions was approximately $470 billion in 2013, up from an estimated $450 billion in 2009,” notes AARP’s caregiver report. What will be the impact on the nation’s health care system without family caregivers providing informal care?

The Census Bureau’s 2017 National Population Projections, again puts the spot light on the decreasing caregiver ratio over the next decades identified by the AARP Policy Institute, one that must be planned for and addressed by Congress, federal and state policy makers.

Who Will Take Care of Aging Baby Boomers?

With the expansion in the size of the older population, 1 in every 5 United States residents will be retirement age. Who will provide informal caregiving in our nation with a larger adult population and less children to serve as caregivers?

“The aging of baby boomers means that within just a couple decades, older people are projected to outnumber children for the first time in U.S. history,” said Jonathan Vespa, a demographer with the U.S. Census Bureau. “By 2035, there will be 78.0 million people 65 years and older compared to 76.4 million under the age of 18.”

The 2030s are projected to be a transformative decade for the U.S. population, says the 2017 statistical projections – the population is expected to grow at a slower pace, age considerably and become more racially and ethnically diverse. The nation’s median age is expected to grow from age 38 today to age 43 by 2060.

The Census Bureau also observed that that as the population ages, the ratio of older adults to working-age adults, also known as the old-age dependency ratio, is projected to rise. By 2020, there will be about three-and-a-half working-age adults for every retirement-age person. By 2060, that ratio will fall to just two-and-a-half working-age adults for every retirement-age person.

Real Challenges Face Congress as the Nation Ages

Jean Accius, Ph.D., AARP Policy Institute’s Vice President, Independent Living, Long-Term Services and Supports, says, “The recent Census report highlights the sense of urgency to develop innovative solutions that will support our growing older adult population at a time when there will likely be fewer family caregivers available to help. The challenges that face us are real, but they are not insurmountable. In fact, this is an opportunity if we begin now to lay the foundation for a better system of family support for the future. The enactment of the RAISE (Recognize, Assist, Include, Support and Engage) Family Caregivers Act, which would create a strategy for supporting family caregivers, is a great path forward.”

Max Richtman, President and CEO of the Washington, DC-based National Committee to Preserve Social Security and Medicare, gives his take on the Census Bureau’s 2017 statistical projections, too.

“Despite how cataclysmic this may sound, the rising number of older people due to the aging of baby boomers is no surprise and has been predicted for many years. This is why the Social Security system was changed in 1983 to prepare for this eventuality. Under current law, full benefits will continue to be paid through 2034 and we are confident that Congress will make the necessary changes, such as raising the wage cap, to ensure that full benefits continue to be made well into the future,” says Richtman.

Richtman calls informal caregiving “a critical part of a care plan” that enhances an older person’s well-being. “While there currently are programs such as the Medicaid Waiver that will pay family members who provide caregiving support more can be done to incentivize caregiving so that loss of personal income and Social Security work credits are not barriers to enlisting the help of younger individuals to provide informal support services,” he says.

Adds Richtman, the Medicare and Medicaid benefits which reimburse for the home-based services and skilled nursing care “will be unduly strained ”as the diagnosed cases of Alzheimer’s disease skyrockets with the growing boomer population. He calls on Congress to “immediately provide adequate research funding to the National Institutes of Health to accelerate finding a cure in order to save these programs and lower the burdens on family caregivers and the healthcare system. “

Finally, AARP Rhode Island State Director Kathleen Connell, says “Our aging population represents challenges on many, many fronts, including healthcare, housing, Social Security, Medicare and, of course, caregiving. It would be nice to think everything would take care of itself if there were more younger people than older people. But that misses the point entirely. The needs of older Americans are a challenge to all Americans, if for no other reason than most of us end up with multiple late in life needs. And too many reach that point without savings to cover those needs.”

“It’s worth noting, by the way, that many of the solutions will come from people 50 and older — many of whom will work longer in their lives to improve the lives of older Americans. We need to stop looking through the lens of ‘old people’ being the problem and instead encourage and empower older Americans to take greater control over their lives as they help others,” says Connell.

“Congress needs to focus on common sense solutions to assure families that Social Security and Medicare are protected. The healthcare industry needs to face the medical challenges. And at the state and local level, we must focus on home and community-based health services,” adds Connell.

For details about the Census Bureau’s 2017 statistical projections, co to http://www.census.gov/newsroom/press-releases/2018/cb18-41-population-projections.html.

For more information about AARP’s July 2015 caregiver report, go to http://www.aarp.org/content/dam/aarp/ppi/2015/valuing-the-invaluable-2015-update-new.pdf.

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It’s Time to Pass RAISE Family Caregivers Act

Published in the Pawtucket Times on September 18, 2017

Editor’s Note: Four months after S. 1028, titled the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, was introduced in the Senate, an updated House companion bill (H.R. 3759) gets dropped into the chamber’s legislative hopper. On September 13, Reps. Gregg Harper (R-MS) and Kathy Castor (D-FL) along with original cosponsors Reps Michelle Lujan Grisham (D-NM) and Elise Stefanik (R-NY) introduced the legislation that calls for the development of a strategy to support family caregivers. It was referred to House Committee on Education and the Workforce. At press time, Rep. David Cicilline (D-RI) will shortly become a cosponsor of H.R. 3759.

On May 3, Sens. Susan Collins (R-ME), the Chairman of Senate Aging Committee, and Tammy Baldwin (D-WI) reintroduced the RAISE Family Caregivers Act, with Sens. Lisa Murkowski (R-AK) Michael Bennet (D-CO) signing on as cosponsors. At press time, there are now 12 cosponsors. Sen. Collins and Baldwin and Reps. Harper and Castor first introduced the family caregiver legislation in July 2015, and it passed the Senate unanimously in December 2015.

Eight days later the Senate Health, Education, Labor and Pensions Committee unanimously passed this legislation by a voice vote later that month and the bipartisan legislation will now be considered by the full Senate.

The Nuts and Bolts

The House bill introduced this week is updated from the Senate version introduced in early May. That Senate version is almost identical to the Senate-passed version from 2015.

The RAISE Family Caregivers Act directs the Secretary of Health and Human Services to develop and update a national strategy to support family caregivers. The legislation would also create a Family Caregiving Advisory Council comprised of relevant Federal agencies and non-federal members, also including family caregivers, older adults with long-term care needs, individuals with disabilities, employers, health and social service providers, advocacy organizations engaged in family caregiving, state and local officials, and others with expertise in family caregiving.

The newly established Advisory Council would be charged with making recommendations to the Secretary. The strategy would be updated to reflect new
developments. The Advisory Council’s initial report would include an initial inventory and assessment of federally funded caregiver efforts that would be incorporated into the initial strategy. The strategy would then identify recommended actions that government, providers, communities, and others could take to support family caregivers.

The activities under the bill would be funded from existing funding appropriated for the Department of Health and Human Services. No new funding is
authorized and it would sunset in five years.

This bipartisan caregiver legislation has been endorsed by over 60 aging and disability organizations, including the AARP, the Alzheimer’s Association, the w Michael J. Fox Foundation and the Arc.

Shouldering Caregiver Burdens

“Every day, more than 40 million ordinary Americans take on the challenge of caring for parents, spouses, children and adults with disabilities, and other loved ones so they can live independently at home and in their communities,” says AARP Chief Advocacy & Engagement Officer Nancy A. LeaMond. “The RAISE Family Caregivers Act is a commonsense, bipartisan step to recognize and support our nation’s family caregivers. AARP appreciates the leadership of Representatives Harper and Castor, and we urge Congress to pass this important piece of legislation,” she notes.

According to LeaMond, the nation’s family caregivers assist loved ones with eating, bathing, dressing, transportation, medical tasks, managing finances, and more. Many do this while working full time and raising families. The unpaid care family caregivers provide—37 billion hours valued at about $470 billion annually—helps delay or prevent more costly care and unnecessary hospitalizations, saving taxpayer dollars.

“Caregiving is, in one way or another, now an inevitable part of everyone’s future,” said AARP Rhode Island State Director Kathleen Connell. “It has been said that if you ask people about caregiving they fall into one of three or more categories: They know a caregiver, they are a caregiver or they will require a caregiver. AARP works hard at the state and federal level to direct resources and support to family caregivers. In Rhode Island, we have fought successfully for temporary caregiver insurance (TCI), the CARE Act, accessory dwelling unit legislation and a new fund to help offset the cost of ‘livable’ home improvements that benefit caregiving and make aging in place easier.”

“In the upcoming special session of the General Assembly, another key caregiving bill will be before lawmakers,” Connell added. “Earned Paid Sick Leave will be especially helpful to working family caregivers whose employers do not offer paid time off. Temporary caregiver insurance requires several days advanced notice. That can be helpful, for example, if a family member has a scheduled test or medical procedure. Earned paid sick leave would allow employees to used paid sick time when they are called away to attend to immediate emergencies.”

“The RAISE Family Caregivers Act is intended to provide a policy framework for improving caregiver support from national level down to states, cities and towns. In short, where the caregiver rubber meets the road,” Connell said.

Caregiver Legislative Proposal a Bipartisan Issue

According to AARP’s Public Policy Institute, there are 40 million family caregivers in the United States who provided an estimated $470 billion in uncompensated long-term care in 2013. In the Ocean State at any time during the year, an estimated 134,000 Rhode Island family caregivers step up to provide 124 million hours of care for an aging parent or loved one, most often helping them to live independently in their own homes.

With many caregivers putting their own health at risk, experiencing experience high-levels of stress and have a greater incidence of chronic conditions like heart disease, cancer, and depression, these individuals need the support and assistance that the enactment of the RAISE Family Caregivers Act could help bring about. Both sides of the aisle must put their political differences aside and push for passage. Both Republicans and Democrats shoulder caregiving duties.

Quickly passing the RAISE Family Caregivers Act in the Senate and House and sending it to the desk of President Donald Trump for his signature is the right thing to do.

Assistance to Employee Caregivers Good for Everyone’s Bottom Line

Published in Woonsocket Call on June 11, 2017

Days ago, AARP and the Respect a Caregiver’s Time Coalition (ReACT) released a report detailing innovative practices and policies of 14 organizations to support their employees with caregiver responsibilities. With the graying of America, supporting caregiver employees should be considered “a potentially new weapon” to attract or retain talented employees, say the researchers, by flexible work arrangements and paid leave policies. And there will be a need for this support.

It is estimated that of the 40 million unpaid family caregivers in the U.S., 60 percent are employed. According to the National Alliance for Caregiving (NAC) and AARP Public Policy Institute, nearly 25 percent of all family caregivers are millennials, and 50 percent are under the age of 50. This means that the growing number of family caregivers in the workforce is an issue that all employers will face. The NAC/AARP research also revealed that 61 percent of working caregivers must make workplace accommodations including modifying hours, taking a leave of absence, choosing early retirement or turning down a promotion.

Report Cites Best Practices to Support Employee Caregivers

The 14 case studies in the new report, “Supporting Working Caregivers: Case Studies of Promising Practices,” include well-known organizations from both the for-profit and nonprofit sectors, and both large and small employers. They represent a broad set of industries, including financial services, health care, higher education, home care, management consulting, media, and technology.

There is “no one size fit all” solution to meeting the needs of employee caregivers, say the researchers. But, even with the diversity of the 14 participating organizations “there is clear evidence of promising practices” identified through these interviews, they note.

Researchers gleaned best practices from 14 nonprofits and for profits (from very large employers with over 200,000 workers to ones with less than 200 workers), detailing in the report released on June 8, 2017, how these organizations assist their caregiver employees. These companies provide a broad array of information resources and referrals, flexible work arrangements, paid time off for caregiving, emergency backup care, and, in some cases, high-touch counseling and care management advice.

“Family caregivers juggle their loved one’s needs with their own personal and professional goals every day. AARP hopes this report will encourage more employers understand caregiving and support their employees’ success,” said Nancy LeaMond, executive vice president and chief advocacy and engagement officer in a statement. AARP sponsored the 49-page report.

According to researchers, interviews with business and human resources executives from the profiled organizations indicated that time and flexibility are what matter most to employees when it comes to balancing work and caregiving. Close to half of the employers interviewed provide paid time off for caregiving as well as emergency backup care and flexible work arrangements.

All offer employee caregivers a combination of information resources, referral services and advice by phone. Most provide resources online, typically through an employee assistance program (EAP) or an intranet portal. More than half offer phone consultations or 24/7 expert hotlines. Several interviewees stressed the value of providing on-site, independent eldercare consultants, noting that employees appreciate both the convenience and the respect for their privacy.

“ReACT represents a cross-sector employer effort to raise awareness of and spur action to meet the challenges millions face every day while taking care of an older loved one,” said Drew Holzapfel, convener of ReACT, in a statement. “It’s exciting to see how leading organizations are showcasing the value of employee caregivers’ dual roles at home and in the office.”

Organizations Give Thumbs Up to Assisting Employee Caregivers

Interviewees at the participating organizations were not shy in explaining the importance of offering caregiver assistance to employees.

Michelle Stone, Fannie Mae’s Work-Life Benefits Senior Program Manager, says, “We have been asked, ‘How can you afford to do this?’ Our response is, ‘How can we afford not to?’ The program helps our company and our employees save time and money, and the return on investment is substantial.”

Michelle Martin, Vice President, Human Resources Specialty Services, CBS Corporation, states, “Our hope is to fill the gaps in support along the continuum of care so that employees not only have what they need to care, but also the peace of mind to do so without worrying about their job.”

“At Allianz Life, we like to say, ‘we’ve been keeping promises to our employees and customers since our founding.’ Nothing matters more than our employees and we work every day to provide them with benefits that allow for work-life balance and peace of mind,” says Suzanne Dowd Zeller, Chief Human Resources Officer.

Adds Audrey Adelson, manager of work-life, Emory University, “Our program is based on a continuum of care model, designed to support not only entrenched caregivers, but also those who anticipate becoming a caregiver and those whose caregiving responsibilities have ended and are beginning to move beyond caregiving.”

AARP Rhode Island Champions Caregiving Temporary Disability Insurance

Most employers recognize that some of their best workers are not at their best when they are caregivers in crisis for feeling the onset of burnout,” AARP Rhode Island State Director Kathleen noted. “One of the reasons is that most employers and their human resources managers respond to the needs of caregivers is because they are not far removed from caregiving if not caregivers themselves. They know that caregiving responsibilities sometimes must take precedence over work. And they understand that what is good for the caregiver is also good for their business.

“In Rhode Island, caregiving temporary disability insurance – legislation championed by AARP – gives caregivers paid leave to attend to caregiving tasks or as respite when a break from work benefits all concerned. Employers should assess their policies and give thought to the importance of supporting their caregiving employees’ success. This is true of businesses large and small and non-profits as well. These bosses can start by simply asking themselves what their expectations would be if they were an employee.”

Rhode Island CEOs might consider obtaining a copy of this report, passing the document to Human Resources for review and ultimate implement of eldercare policies. Stressed employee caregivers will appreciate any assistance they can get to help them in their caregiving responsibilities. But, this makes good business sense, too. Assisting employee caregivers will increase employee productivity, improving the company’s bottom line.

To read the full report, go to:
http://respectcaregivers.org/wp-content/uploads/2017/05/AARP-ReAct-MASTER-web.pdf

The Growing Incidence of Alzheimer’s

Published in Pawtucket Times on April 26, 2016

While Congress and states are nation grappling with how to put the brakes to one of the largest public health crises in recent times, the escalating Alzheimer’s disease (AD) epidemic, the Chicago-based Alzheimer’s Association releases its annual snap shot detailing statistics on the impact of Alzheimer’s and dementia on caregivers and health care costs..

According to the 2016 Alzheimer’s disease Facts and Figures, released on March 30, 2016, this year nearly 16 million Alzheimer’s caregivers will provide 18 billion hours of unpaid care to 5.4 million afflicted with this devastating disorder. That care had an estimated value of $221.3 billion, says the report.

But that’s not all, this recently released report notes that two out of three people believe that Medicare will help them over costly nursing facility costs. Sorry it won’t. AD also has a direct impact on a caregiver’s pocketbook, too, the researchers found. More than one-third of those surveyed say they were forced by caregiving duties to reduce their hours at work or just quit their job entirely. As a result of these actions their income dropped by $15,000 compared to the previous year. Eleven percent of caregivers were forced to cut back on spending for their children’s education in order to provide support.

The 79 page Alzheimer’s Association report notes that both physical, emotional and financial support required by a person with AD may ultimately deprive family and friend care givers basic necessities, such as food, transportation and medical care. The Facts and Figures report reveals that these caregivers were 28 percent more likely to eat less or go hungry while contributing care to someone with AD, and one-fifth even sacrificed their own medical care by cutting back on doctor visits. Overall, nearly half of the caregivers say they cut back on their own expenses to afford dementia-related care for their family member or friend.

“The devastating emotional and physical effects of caring for a person with Alzheimer’s disease has been well-studied,” said Beth Kallmyer, MSW, Vice President of Constituent Services for the Alzheimer’s Association. “However, this new report shows, for the first time, the enormous personal financial sacrifices that millions of care contributors must make every day. These sacrifices jeopardize the financial security of individuals and families, as well as their access to basic needs and health care.”

This year’s Facts and Figures report found that 13 percent of family or friend caregivers sold personal belongings, such as a car, to help pay for costs related to dementia, while nearly half tapped into savings or retirement funds. On average, caregivers, many of whom do not live with the person they’re caring for, spent more than $5,000 a year of their own money to care for someone with AD; however, amounts varied with many spending tens of thousands of dollars per year.
Incidents of AD is Fast Growing

The Facts and Figures report says that out of the 5.4 million (of all ages) afflicted with AD, an estimated 5.2 million are age 65 and over. Yes, one in nine people having the cognitive disorder. Approximately 200,000, having early onset AD, are under age 65.

Also, the recently released Facts and Figures report warns that we are truly in the midst of an AD epidemic as the baby boomers grow older. By 2050, researchers say that someone in the United States will develop AD every 33 seconds. Without a medical breakthroughs to prevent or cure, the age 65 and over population with AD, the incidence is expected to nearly triple, from 5.2 million to a projected 13.8 million. Some say may be even as high as 16 million. It’s the only disease among the top 10 causes of death in America that cannot be prevented, cured or even slowed. .

Additionally, this year’s Facts and Figure report notes that AD is officially listed as the sixth-leading cause of death in this country. It is the fifth-leading cause of death for people age 65 and older. With the graying of America, AD will become a more common cause of death. At age 70, 61 percent of those with AD are expected to die before the age of 80 compared with 30 percent of people without the cognitive disorder — a rate twice as high, says the report.

The Typical Care Giver

The Facts and Figures report puts the face on a typical caregiver. Approximately two-thirds of caregivers are women, and 34 percent are age 65 or older. Forty one percent have a household income of $50,000 or less.

AD takes a devastating toll on the health of caregivers, says the Facts and Figures report. Nearly 60 percent of those taking care of loved ones with Alzheimer’s and dementia report that their emotional stress being high or very high. About 40 percent suffer from depression. One in five care givers cut back on their own physician visits because of their caregiving responsibilities. And, among caregivers, 74 percent report they are “somewhat” to “very” concerned about maintaining their own health since becoming a caregiver.

A Huge Cost on the Health Care System

The report’s researchers warn that the AD epidemic might just bankrupt the nation’s Medicare program. In 2016, total payments for health care, long-term care and hospice are estimated to be $236 billion for people with Alzheimer’s and other dementias, with just under half of the costs paid by Medicare. Nearly one in every five Medicare dollars is spent on people with Alzheimer’s and other dementias. In 2050, it will be one in every three dollars

Medicare and Medicaid are expected to cover $160 billion, or 68 percent, of the total health care and long-term care payments for people with Alzheimer’s disease and other dementias.

Seeing a huge rise in AD over the last two years, federal and state officials are gearing up to strategize a battle to fight the impending epidemic.

A Call to Action

Yes, the AD epidemic is here, right in Rhode Island. Everyone is personally touched by either caring for a family member with the cognitive disorder or knows someone who is a caregiver or afflicted.

Following the efforts of Congress to create a national strategic plan to address the rapidly escalating AD crisis and to coordinate resources across federal agencies, the Rhode Island General Assembly passed a joint resolution enacted into law to direct the Lt. Governor’s Long Term Care Coordinating Council (LTCCC) to be the vehicle to develop a state plan to address this growing public health crisis in the Ocean State. Ultimately, for over a year former Lt. Governor Elizabeth Roberts along with LTCCC members, former Division of Elderly Affairs Director Catherine Taylor, the state Chapter of the Alzheimer’s Association, universities and health care organizations with the public input gleaned from 8 listening events hammered out the 122 page battle plan with over 30 pages of recommendations.

In 2016, Lt. Governor Daniel J. McKee has picked up the ball and convened a meeting of the Executive Board on Alzheimer’s Disease and Related Disorders, consisting of researchers, advocates, clinicians and caregivers, to begin efforts to implement recommendations from the State’s Alzheimer’s Plan. The group will determine which recommendations are outdated.

With a rising population of Rhode Islander’s with AD, state policy makers must act swiftly and lose no more time in addressing this terrible disease and public health issue.

Unpaid Caregiver Care Saves State Money

Published in Woonsocket Call on July 26, 2015

With the graying of state’s population, Ocean State caregivers provided 124 million hours of care—worth an estimated 1.78 billion —to their parents, spouses, partners, and other adult loved ones in 2013, according to a new AARP Policy Institute’s report.  The total estimated economic value of uncompensated care provided by the nation’s family caregivers surpassed total Medicaid spending ($449 billion), and nearly equaled the annual sales ($469 billion) of the four largest U.S. tech companies combined (Apple, Hewlett Packard, IBM, and Microsoft) in 2013, says the 25 page report.

AARP’s report, Valuing the Invaluable: 2015 Update, noted that family caregiving for relatives or close friends with chronic, disabling, or serious health problems – so they can remain in their home – is nearly universal today.  In 2013, about 134,000 family caregivers in Rhode Island helped another adult loved one carry out daily activities (such as bathing or dressing, preparing meals, administering medications, driving to doctor visits, and paying bills), says the report issued on July 16.

Log on to AARP Rhode Island’s caregiving Web page (www.aarp.org/ricaregiving) to download the report as well as access information on recent caregiver legislation passed by the General Assembly and other resources: www.aarp.org/ricaregiving.

The Difficulty of Caregiving

The AARP report detailed how caregiving can impact a person’s job, finances and even their health, says the researchers.   More than half (55%) of family caregivers report being overwhelmed by the amount of care their family member needs, says the report.  Nearly 4 in 10 (38%) family caregivers report a moderate (20%) to high degree (18%) of financial strain as a result of providing care. In 2014, the majority (60%) of family caregivers had full- or part-time jobs, placing competing demands on the caregivers’ time.

According to AARP Rhode Island State Director Kathleen Connell, AARP’s study on caregiving affirms the state’s record as a trailblazer in the field of caregiving. In 2013, Rhode Island became just the third state to enact paid family leave, which is known as Temporary Caregiver Insurance (TCI). Also in 2013, Rhode Island enacted the Family Caregivers Support Act, which requires a family caregiver to receive an assessment,” she said.

Connell said that this year the Ocean State remained in the forefront of helping caregivers with passage of the Caregiver Advise, Record, Enable (CARE) Act, which calls for hospitals to provide instruction to designated caregivers. Additionally, Rhode Island became the 42nd state to enact the Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act. In Rhode Island, a court-appointed guardian can make important decisions across state lines.

“This new report, however, does demonstrate that we need and can do more to assist the many caregivers in our state,” said Connell. “Some of the ways we can help family caregivers include continuing efforts to improve workplace flexibility, respite care, tax credits and home care services,” she says.

Adds Charles Fogarty, Director of the state’s Division of Elderly Affairs (DEA), “This study demonstrates that the backbone of long-term services and supports are family members and informal caregivers.  Quantifying the hours and economic value of caregiving provided by Rhode Island families and informal caregivers raises public awareness of the impact these services have upon Rhode Island’s health system and economy.  It is clear that there is a significant need to support caregivers who, at a cost to their own health and economic well-being, work to keep their family members in the community.”

DEA works with the state’s Aging Disability and Resource Centers and local nonprofits and agencies such as the RI Chapter of the Alzheimer’s Association, Office of Catholic Charities of the Diocese of Providence, local YMCAs and Adult Day Care programs, to provide programming, support groups and information to Rhode Island’s caregivers, according to Fogarty.  “Rhode Island also requires that a caregiver assessment be conducted when a recipient of Medicaid-funded Home and Community Based Services has a caregiver providing support in the home,” he says.

Improving State Support for Caregiving

            Although Maureen Maigret, policy consultant for the Senior Agenda Coalition of Rhode Island acknowledges Rhode Island as being a leader with progressive laws on the books supporting caregivers, specifically the Temporary Caregiver Insurance Program, more work needs to be done.

Maigret calls for better dissemination of information to caregivers about what services and programs are available.  “In this day and age we should have a robust Rhode Island specific internet site that offers caregiving information about state specific resources,” she says, noting that too often caregivers “just do not know where to turn to find out about programs like DEA’s co-pay program.”  This program pays a share of the cost for home care and adult day care for low-income persons whose incomes are too high to meet Medicaid eligibility.

          Rhode Island also falls short in providing subsidies to caregivers of frail low income elderly to keep them out of costly nursing homes, says Maigret, noting that the program’s funding was cut by 50 percent in 2008, creating waiting lists which have occurred over the years, It’s “short sided” to not allocate adequate resources to this program. The average annual cost of $ 1,200 per family for the caregiver subsidy program can keep a person from going on Medicaid, at far greater expense to Rhode Island taxpayers, she says.

          This AARP report must not sit on a dusty shelf.  It gives an early warning to Congress and to local lawmakers.  As Americans [and Rhode Islanders} live longer and have fewer children, fewer family members will be available for caregiving duties. Researchers say that the ratio of potential family caregivers to the growing number of older people has already begun a steep decline. In 2010, there were 7.2 potential family caregivers for every person age 80 and older. By 2030, that ratio will fall sharply to 4 to 1, and is projected to drop further to 3 to 1 in 2050.

With less caregivers in the trenches providing unpaid care to keep their loved one at home, the state will have to step in to provide these programs and services – for a huge price tag to taxpayers.  State lawmakers must not be penny wise and pound foolish when it comes to caregiver programs.  Funding should not be slashed in future budgets, rather increases might just make political sense especially to tax payers.

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