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AARP Report: Unpaid Caregiving Valued at $ 600 Billion

Published in RINewsToday on March 13, 2023

Family caregivers put in over $36 Billion hours in unpaid care taking care of loved ones, a responsibility that takes a heavy toll on them financially, physically, emotionally, and mentally.

But now, a new AARP report reveals that the family caregiver unpaid work is estimated to be valued at more than $600 Billion. This is a $130 Billion increase in unpaid contributions from family caregivers since the last report in the series was released in 2019. The economic impact of $600 Billion is more than all out-of-pocket spending on health care in the U.S. in 2021, notes the AARP report.

The 32-page 2023 update, Valuing the Invaluable, highlights trends in family caregiving, explores the growing scope and complexity of family caregiving, and discusses actions needed to be taken to address the financial, social, and emotional challenges of caring for parents, spouses, and other loved ones. 

AARP continues to put the spotlight on this important aging policy issue as the graying of the nation’s population continues. According to the group, by 2034, adults aged 65 and older will outnumber children under the age of 18 for the first time ever.

The share of available family caregivers is projected to continue shrinking, relative to the number of older adults who will potentially require long-term care. In addition, family caregivers will continue to face the dual demands of employment and caregiving responsibilities, which often includes bringing up children while taking caring of older parents simultaneously.

“Family caregivers are the backbone of long-term care in this country,” said Susan Reinhard, senior vice president, AARP Public Policy Institute, and a lead author of the report. In a March 8, 2023 statement announcing its release, Reinhard said, “The care they provide is invaluable to those receiving it. But this is not just a family issue: it impacts communities, employers, and our health and long-term care systems. We must treat family caregivers as the valuable resource that they are by providing them the support they need to care for loved ones while also caring for themselves.”

AARP, the nation’s largest aging advocacy group representing over 38 million members, says it plans to push this year to turn the National Strategy to Support Family Caregivers into action that provides meaningful, tangible outcomes and support for family caregivers. The National Strategy, delivered to Congress last September, stemmed from the RAISE Family Caregivers Act, which was championed by AARP. The National Strategy highlights nearly 350 actions that the federal government will take and more than 150 that can be adopted by stakeholders and other levels of government to give family caregivers the necessary help they need.

Taking a Closer Look at Home

AARP’s latest report in the Valuing the Invaluable series also provides us data for the Ocean State as to the value of unpaid caregiving provided here. The unpaid care provided by the 121,000 Rhode Island caregivers is valued at $2.1 Billion. This amount was calculated at an $18.95 hourly value to the estimated 113 million hours of unpaid care that family caregivers provided in 2021 – a $300 million increase in unpaid contributions since the last report was released in 2019.

“Family caregivers play a vital role in Rhode Island’s health care system, whether they care for someone at home, coordinate home health care, or help care for someone who lives in a nursing home,” said Catherine Taylor, AARP Rhode Island State Director. “We want to make sure all family caregivers have the financial, emotional and social support they need, because the care they provide is invaluable both to those receiving it and to their community,” she says.

At the Rhode Island State Capitol, AARP Rhode Island says it will continue its fight for assisting family caregivers and the loved ones they care for. During the 2021 Rhode Island General Assembly Session, AARP Rhode Island, along with other aging advocacy groups, successfully lobbied to enhance the Temporary Caregiver Insurance program by increasing the number of weeks a worker can take annually to care for a loved one from 4 to 6 weeks.

During the current legislation session, AARP Rhode Island calls for state lawmakers to support family caregivers who work because caring for a loved one shouldn’t mean losing pay—or even their job. House Bill 5781/Senate Bill 139 will increase the number of weeks that one can take annually to 12. These bills would also expand the definition of family in Rhode Island’s existing paid family leave law to include siblings, grandchildren and other care recipients to fit the reality of Rhode Island’s diverse and multigenerational families.

“Too often our unpaid caregivers are not acknowledged. We need to show the many thousands of unpaid caregivers in Rhode Island we value their contributions with sound policies, programs and laws that support them,” says Maureen Maigret, Policy Advisor for Senior Agenda Coalition of RI.

Maigret also calls for expanding the state Temporary Caregiver Insurance law from six to twelve weeks as most states that have such programs allow, and for including siblings, grandchildren and care recipients – important steps in making Rhode Island a more family-friendly state. “I have personally been a caregiver for a number of family members and know how challenging it can be to navigate our long-term care system,” Maigret says.

“Another important step to support our caregivers is to provide state funding to strengthen The POINT, the state Aging and Disability Resource Center, so that caregivers have a single place they can go to get timely, reliable information and person-centered counseling about the services, supports and benefits available to them as caregivers,” says Maigret. “Too often caregivers are not aware of programs such as subsidized respite and adult day or benefits available to care recipients. That is why the Senior Agenda Coalition of RI is asking the legislature to add $.5 Million to the state budget as The POINT currently receives no state funds and relies entirely on insufficient federal dollars,” she adds.

“It is also important that caregivers be viewed as part of a person’s healthcare team. Healthcare providers, especially those in primary care, need to ask patients if they are getting care from a family member or if they themselves are a caregiver,” says Maigret, noting that this action will provide an opportunity for providers to offer information and guidance about available services and supports.

Resources for Caregivers

“We know that everyone’s path to aging is different and it’s our paid and unpaid caregivers that provide critical supports to our loved ones,” said Office of Healthy Aging Director Maria Cimini. “At the Office of Healthy Aging, we are committed to supporting our caregivers in a variety of ways encouraging self-care through respite programs, informational workshops, and our senior companion volunteer program,” says Cimini.  She suggests that family caregivers go to https://oha.ri.gov/resources/oha-resource-center to download OHA’s 2023 Pocket Manual, detailing resources available programs and services that the state agency provides to family caregivers.

Dementia and Alzheimer’s care

“Dementia caregiving is challenging emotionally, physically, and financially. The care that family members provide is priceless, really. We want people to know they are not alone and that the Alzheimer’s Association, Rhode Island chapter has both in person/virtual support groups and community based educational programs for people who are caring for a person living with a diagnosis of Alzheimer’s disease or a related dementia throughout the state,” says Donna McGowan, Executive Director, Alzheimer’s Association Rhode Island Chapter, noting that there are 24 thousand people living with Alzheimer’s in Rhode Island and 39,000 caregivers, many unpaid family members.

“The Alzheimer’s Association believes that understanding how the diagnosis will affect the entire family is truly important to know what resources the family may/will need and how to pay for care must be considered starting right from when a diagnosis is made,” says McGowan.

McGowan says that the Alzheimer’s Association’s  24/7 Helpline clinicians guide callers to financial assistance programs that may help pay for respite or a needed break. For details, go to https://www.alz.org/ri

Chris Gadbois, DNP, RN, PHNA-BC, PMH-BC, Chief Executive Officer of the East Providence-based CareLink, says AARP’s report highlights the critical need for support for caregivers in Rhode Island. “At CareLink, we see firsthand the impact on the health and well-being of caregivers and are working hard to provide programs to provide resources. Our Administration on Community Living grant funded program to support individuals with dementia and their care partners is just one example of services that can help people to remain safely in their homes,” she says. 

The program, delivered by a trained Occupational Therapist, during five ninety-minute home visits, includes techniques to reduce challenging behaviors, promote functioning, improve caregiver communication, home environment safety, and tips focused on caregiver self-care, including problem solving and teaching stress management techniques. For more details, go to https://carelinkri.org/member-services/therapeutic-services-for-dementia/.

AARP provides a comprehensive listing of resources and information on family caregiving.  Go to aarp.org/caregiving.

For a 2023 copy of Valuing the Invaluable, go to https://www.aarp.org/content/dam/aarp/ppi/2023/3/valuing-the-invaluable-2023-update.doi.10.26419-2Fppi.00082.006.pdf.

Resources and information on family caregiving are available at aarp.org/caregiving.

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Senior groups ask House leadership for an “Age-Friendly Rhode Island” budget

Will House Leadership’s Budget Proposal Create an “Age-Friendly” State?

Published in RINewsToday on February 6, 2023

Over two weeks ago, Gov. Dan McKee unveiled his $13.8 billion proposed FY 24 Budget. To members of the aging community, the reaction is that this budget shortchanges seniors.  In an e-blast sent to 1,800 seniors and aging advocates, the Senior Agenda Coalition of Rhode Island (SACRI) described the proposed budget as unfriendly to seniors.

“Governor McKee’s proposed FY2024 budget that would take effect on July 1, 2023, ignores the needs of Rhode Island’s rapidly-growing older population,” noted SACRI, which represents 21 organizations with allied concerns. The budget document will reflect what lawmaker’s value and “as it stands, this budget fails to value us,” states the email.

Calls for creating an “Age Friendly” budget  

The SACRI legislative alert highlights how McKee’s FY 24 budget proposal is “senior lite,” noting that it provides minimal increases in funding for senior centers and Meals on Wheels.  More concerning, “it does nothing to address the larger investments needed to enable a growing number of seniors to age in the community.”

SACRI says the budget proposal has ignored requests from advocates and the community, even some requests that came from the RI Office of Healthy Aging (RIOHA). Specifically, the Governor’s budget did not include funding for additional RIOHA staff, in particular for its Adult Protective Services that received over 6,000 calls last year.

“For fourteen years we’ve urged the state to invest in improving The Point, but our requests have fallen on deaf ears. At community meetings with seniors and their caregivers of all income levels, we found their most frequent and compelling complaints were about their great difficulties in finding reliable information about available support and service options,” says SACRI, noting that very few seniors, or their adult children caregivers, even know that The Point exists. “But they are very well aware that without reliable and timely information about home and community-based care, their least-desirable and most expensive choice – nursing home care – often becomes the default,” says the legislative alert email,” he stated.

According to SACRI, the FY 2024 budget didn’t include increased Medicaid reimbursements to homecare and nursing home providers to raise their direct care workers’ wages and reduce workforce turnover. Nor did it include financial aid to help low and moderate-income seniors pay their Medicare Part B premiums and co-pays, as many other states have done.

The Ask…

SACRI is calling on House Speaker Joe Shekarchi (D-Warwick) and Senate President Dominick Ruggerio (D-Providence, North Providence) to support an “Age Friendly Budget.”  Why not improve funding for aging programs and services that ultimately benefit everyone in their later years?

More older Rhode Islanders are going to need to access programs and services to allow them to age in place at home. “Seniors strongly desire to “age in the community,” but the services that allow them to do that are often hard to find or simply unavailable. SACRI’s budgetary wish list includes increasing the minimum salaries of senior home care and nursing home care workers to $20 per hour, that’s a 50% federal match.

SACRI also calls for allocating $500,000 in first-time state funding for major improvements to The Point to provide information and referral services for seniors and their caregivers. This increased funding never made it into the FY 2024 budget proposal outlined in Gov. McKee’s Jan. 17th State of the State Address.

“With Rhode Island’s aging population skyrocketing, why not add five staff persons requested by the RIOHA, two of whom will work in its Adult Protective Services Program,” says SACRI. 

Finally, SACRI says the House budget should also include a provision to raise the income level for seniors to qualify for the Medicare Premium Savings Plan to save seniors close to $2,000 per year. Older Rhode Islanders are becoming poorer with higher numbers falling below the 2023 federal poverty level of $14,580 for a single person and with 28% of older households trying to live on less than $28,000 per year.”

The Aging Network speaks…from the front lines

Maureen Maigret, Chairperson of the Aging in Community Subcommittee for the Long-Term Care Coordinating Council (LTCCC), says that the “Age-Friendly Budget” proposed by SACRI is right on target with the needs of Rhode Island’s older population.

“More than ever, we need to address and adequately fund the services and supports that keep older persons living at home as long as possible. It is especially important for those aged 75 and over as one-half may need supports to remain living at home at the same time that their incomes start to decrease while their healthcare costs increase,” she says.

“The ‘Age-Friendly’ Budget Plan also aligns nicely with the strategic objectives and actions of the Strategic Plan of the LTCCC:s Aging in Community Subcommittee yet to be accomplished,” says Maigret, noting that lawmakers should view funds requested as wise investments that will help older adults remain living at home – where most wish to be – and prevent the use of much higher costs for nursing home care.

“Apparently, the Governor and his staff haven’t fully understood nor been sensitive to the struggles that the aging community has faced since the pandemic – more than 90% of the deaths in RI were individuals over 60, and 52% of the overall deaths were congregate care residents. Many are still frightened, isolated, hungry, and need community homecare or a caregiver,” says Vin Marzullo, who served 31 years as a career federal civil rights & social justice administrator at the National Service Agency.

Marzullo adds, “The Governor’s budget doesn’t provide any vision for an Age Friendly RI – which was to begin in FY2023 according to a 2019 RI OHA Strategic Plan,” adds Marzullo. “We have no coordinated path/strategy to build greater local capacity & support services for our growing aging population.”

“The McKee administration has yet to develop a Comprehensive Master Plan for Aging in RI despite a series of community conversations (Rhode Island 2030) during the Fall of 2021 and commitments made to the elderly during the 2022 Gubernatorial campaign,” charges Marzullo.

Other aging advocates had their views of McKee’s budget proposal

While they are appreciative that the Governor’s budget proposal fully funds the statutory nursing home inflation index of 5.4% plus a 1.5% labor add-on effective October 1, 2023, John Gage, President and CEO of Rhode Island Health Care Association (RIHCA) warns about a major issue facing Rhode Island nursing facilities. “The minimum staffing mandate that was passed in 2021 is largely an unfunded mandate and is impossible to comply with given the 20% reduction in the Rhode Island nursing facility workforce just since the start of the pandemic,” he says.

“RIHCA will work together with the Governor, the House Speaker, and the Senate President for short-term relief from the staggering penalty provisions of the minimum staffing mandate statute – fines estimated at $55-60 million in the first year of full implementation and nearly two-thirds of facilities being prevented from admitting residents after three quarters of their inability to comply by automatic admissions freezes,” he says. There are simply not enough workers to employ to meet the mandate, and fines of this magnitude would devastate the industry and lead to further facility closures,” he adds.

“The Rhode Island Senior Center Director’s Association (RISCDA) is focused on gaining funding requested by RIOHA Director Cimini for increased staffing, fully funding the Point, and supporting senior centers more fully with a funding formula that gets us to the rate of $10/person for non-institutionalized individuals 65 and over residing in each municipality,” says Robert Robillard, RISCDA’s president. “Shoring up services with funding will benefit not just our elders, but their families and caregiver’s alike,” he noted.

According to Robillard, the Governor’s presented budget includes a $200,000 increase for senior centers across our state. This is split between 39 communities based on the number of seniors living in each of the municipalities. “As we are pleased to see this movement to support senior centers more fully, [even with the additional funding] there are gaps within the system of care for our elders here in Rhode Island,” he says.

James Burke Connell, Executive Director, Age-Friendly Rhode Island, agrees with Robillard’s assessment of the key role senior centers play in Rhode Island’s long-term care continuum and the need for increased funding. “No, there isn’t sufficient funding toward the goal of making Rhode Island a great state in which to age, and I’m particularly concerned that the RIOHA will be under resourced to meet the needs of senior centers and older adult Rhode Islanders in general. Senior centers are the hubs of services and programs in every community, and they need greater support from our state, principally through significant increases in RIOHA’s capacity to support our aging population,” he says.

The McKee administration responds…

In responding to SACRI’s charges that McKee’s proposed budget was not “Age Friendly,” Derek Gomes, spokesperson for the state’s Pandemic Recovery Office says, “a single budget cannot address everything that the Administration is committed to accomplishing.” He noted that the Administration will work every year to make meaningful progress toward improving the quality of life for older Rhode Islanders and all the goals in RI 2030.

According to Gomes, the Governor’s proposed budget invests in older Rhode Islanders by including an additional $200,000 for senior centers, an additional $100,000 for Meals on Wheels, and $250,000 to digitalize an essential record of service that military veterans use to receive their benefits. The 2022 November Caseload Estimating Conference increased funding for long-term care by approximately $40 million in all, across Fiscal Year 2023 and Fiscal Year 2024, including a 6.9% rate increase for nursing facilities.

The battle of Rhode Island’s Fiscal Year 2024 budget moves to the House Finance Committee and ultimately for a vote on the House and Senate floor. It’s crucial that House Leadership begin the process of increasing funding for aging programs and services to move Rhode Island closer to becoming an “Age Friendly” state. Every taxpayer will ultimately benefit, because each one will ultimately have to access programs and services to allow them to age in place at home in their community.  

SACRI is planning a Legislative Leadership Forum scheduled for March 22, 2023, at Warwick’s Crowne Plaza. Save the Date. Stay tuned for details. https://senioragendari.org/

Advocates on aging issues review their priorities for Gov. McKee’s policy agenda

Published in RINewsToday on Nov. 14, 2022

Over 3 months ago, the Senior Agenda Coalition of Rhode Island (SACRI) invited the six Gubernatorial candidates to give the details of their aging policy positions to hundreds gathering at East Providence High School, and watching virtually. With the dust settling after the Nov. 8 midterm elections, aging advocates are asking the winner, Gov. Dan McKee, to place a high priority on enacting aging policies that he supported during SACRI’s 143-minute forum.

McKee goes on the record

McKee addressed the issue that Rhode Island nursing home and home care providers can’t provide sufficient and sustainable wages to attract and retain workers because of low state reimbursement. When questioned about how he would rebuild and sustain a viable workforce to provide services to seniors and persons with disabilities, the Governor stated he has addressed staffing issues at home health agencies and nursing homes by expanding the Wavemaker Fellowships to include healthcare workers and increasing reimbursement rates for home health agencies by $900,000 annually.

More seniors prefer to age in place at home in their community rather then enter nursing homes. McKee gave his thoughts about Medicaid rebalancing and expanding the program to keep seniors at home. He touted the $10 million invested this year to rebalance the long-term care continuum, announcing his plans to soon issue an Executive Order to direct state agencies to review existing policies through

At the forum, McKee stated he will also direct all state agencies to appoint a representative to a task force, also including municipalities and community-based nonprofits, that will create a Statewide Aging Plan to determine where federal monies and grants can be utilized to support older Rhode Islanders.

During the mid-1990s the Department of Elderly Affairs (DEA) had a staff of 65. Demoted to the Office of Healthy Aging within the state’s Department of Health and Human Services, Gov. McKee went on record that he will support legislation next year to make the state’s Office of Healthy Aging a full cabinet department. He pledged to provide an adequate budget and staffing to oversee its programs and services to Rhode Island’s growing senior population.   

Gov. McKee also supported a yearly cost-of-living increase to the state Supplemental Security Income payment in the 2024 proposed budget. He also supported the increasing of eligibility for the Medicaid Savings Programs for seniors and people with disabilities in the proposed 2024 budget by eliminating the asset test and increasing eligibility to at least 185% Federal Policy Level. 

With the state passing $250 million in funding for housing, Gov. McKee agreed to provide an adequate amount to support senior housing.  He stated: “we’re off and running”, noting that he recently announced an investment of $80 million to construct 825 units in 17 communities.  The Governor noted that his 2030 plan speaks specifically on the issue of senior housing.

Make aging policy a priority

“With the growing needs of seniors throughout the country and within our state it is time to return to a function of government which “had teeth” to enact change for elders who were at risk,” says Bob Robillard, LMHC, President of Rhode Island Senior Center Directors Association, representing 34 Senior Centers, noting that his aging group is pushing for the passage of bipartisan legislation next session that will elevate the Office of Healthy Aging to a full department – cabinet – status. 

According to Robillard, having a seat at the table as a cabinet position, the Director would directly advocate with the Governor’s Office to address unmet needs and seek creative solutions for our seniors. 

Robillard also urged the Governor to continue efforts to develop secure and affordable housing that meets the need for increased  homelessness of Rhode Island seniors. ”Their income level and having to make difficult choices to survive each month is seen in our interactions with seniors every day, and they are increasingly utilizing food banks, emergency services, and our centers, and funding these basic services needs to be a top priority,” he says.

While some federal funds have been used to address this issue, Robillard says there is a “global need for a full and comprehensive Aging Plan for Rhode Island including the voices of direct service providers like the Senior Centers, senior advocates, caregivers and, of course, seniors, themselves.” 

Finally, Robillard believes that there should be a strong focus on transportation for seniors to access their community. “Safe, respectful and person-centered transportation in our rural areas throughout our state needs to be a focus,” he says, noting that if you cannot access your community in these ways then you cannot participate in them either.

With Rhode Island experiencing a critical shortage of homecare workers, Maureen Maigret, chair of the Long-Term Care Coordinating Council’s Aging in Community Subcommittee, calls on Gov. McKee to provide funding in the FY2024 budget to increase wages for CNAs working in home care. “The current budget includes $10 million to rebalance long term care. These funds should be used for wage increases for homecare direct care staff as an initial step to bring these invaluable workers fair wages,” says Maigret.

“It is also important to provide more resources to the Office of Healthy Aging and support for local senior services. Governor McKee started to increase funds for local aging services in the current budget and the Office of Healthy Aging has requested funding to provide each community ten dollars per person aged sixty-five and over next year,” adds Maigret, urging the Governor to include this in the budget he presents to the legislature for FY2024 as well as other funding requested by the Office including $.5million to support the state’s Aging and Disability Resource Center known as THE POINT. 

Gerontologist Deb Burton calls for the Governor to move forward to pass an Olmstead Plan to create opportunities for individuals to live in the least restrictive environments. “The Olmstead Plan would fit hand in glove with providing resources for individuals to age in the community, and not in institutions,” says Burton, who serves as Executive Director of RI Elder Info.  

Finally, Vincent Marzullo, well-known aging advocate who served as a federal civil rights and national service administrator, suggests that McKee direct the RI Commission for National/Community Service to identify AmeriCorps (national service) opportunities that would help build capacity and service delivery for our local senior centers and human services offices.  “Their needs have grown considerably during COVID,” says the West Warwick resident.

Editor’s Note: During the COVID weekly press conference time, Gov. Raimondo noted that changes need to be made in how people live in Rhode Island’s nursing homes, both from a communicable disease point of view, and from a humanity point of view. She announced a fund of $5 million to be put aside to support nursing homes transitioning their physical “plants” to be single room – single bathroom accommodations. Since Raimondo left office, there has been acknowledgement that this fund was set aside, but no action taken to address the mandate moving forward.