AARP report: States’ care for seniors “painfully inadquate”. Major gaps in RI

Published in RINewsToday on October 2, 2023

Last week, the Washington, DC-based AARP released its latest Long-Term Services and Supports (LTSS) Scorecard, calling care provided to seniors and persons with disabilities during the last three years after the COVID-19 pandemic “painfully inadequate.”  This nine-page report detailed state specific data, finds major gaps in providing care in every state, including Rhode Island, especially in these categories:  “Housing for Older Adults”, “Home Care Costs” and “Home Health Aide Supply”. 

The LTSS Scorecard, consisting of 50 indicators, focused on: affordability and access; choice of setting and provider; safety and quality; support for family caregivers; and community integration, using data from a variety of publicly available sources, such as the Centers for Medicare and Medicaid Services, American Community Survey, and Bureau of Labor Statistics.

Many benefits of accessing the data

According to AARP, this Scorecard can be a roadmap for improving the LTSS systems and the lives of those who rely on assistance.  Many others will benefit by reviewing this data, too. Federal, state, and local policy makers can identify priorities and ensure resources are allocated equitably. Aging advocates can glean public data and hold government officials accountable. Family caregivers can identify needed resources and become actively involved in policy discussions and advocacy. Seniors relying on long-term care programs and services can learn to inspire culture change and demand available tools. Finally, employers can improve workplace policies and practices to assist caregivers and healthcare groups so they can explore public-private partnerships and alliances. 

Like the findings reported in AARP’s LTSS Scorecard in 2020, Rhode Island ranked 12th in the country in 2023, but this year’s Scorecard reveals that the state has made some progress in improving care options for older Rhode Islanders, specifically the enrollment in the Program of All-Inclusive Care for the Elderly (PACE), as well as the availability of Adult Day Services.

“The pandemic reinforced the need to strengthen long-term care for countless loved ones across the country, including here in Rhode Island,” said AARP Rhode Island State Director Catherine Taylor in a Sept. 28th statement announcing the release of the 2023 LTSS Scorecard. 

“AARP’s Scorecard shows that there are many roads to meet the needs of all Rhode Islanders who deserve the very best care, including the 121,000 family caregivers in our state. The overwhelming majority — 87% — of Rhode Islanders age 45+ would prefer to receive care for themselves or loved ones at home with caregiver assistance. Yet, our low rankings in Housing for Older Adults (51st), Home Care Costs (43rd) and Home Health Aide Supply (41st) underscore how difficult it is for them to age the way they choose. It’s time to accelerate our efforts, for the sake of saving more lives,” she says.  

RI is dead last in housing

“In particular, Rhode Island’s dismal ranking for Housing for Older Adults – dead last – points to the urgent need to increase the supply of affordable, accessible housing. We can do that by passing legislation early in 2024 to strengthen homeowners’ ability to build an accessory dwelling unit (ADU) to allow them to age in place, support a family member, or house a caregiver,” Taylor said.

A national snapshot of the LTSS Scorecard’s 2023 Data

According to Scorecard, 12 states, including Rhode Island, have enacted paid family leave laws and 18 states have paid sick day laws, which can be used to assist caregivers. AARP’s latest Scorecard also reported that only 6 states provide a tax credit for family caregivers’ out-of-pocket expenses. Rhode Island does not provide a tax credit – nor is it among the 7 states that have statewide laws protecting caregivers from discrimination in the workplace that ensure they are not unfairly treated due to caregiving duties outside of work.

Meanwhile, it was reported that dozens of states experienced declines in the number of care choices that help support family caregivers. For instance, 16 states, including Rhode Island, had declines of 10% or more in access to home health aides since 2019. 

Regarding Home and Community-Based Services (HCBS), the LTSS Scorecard reported that 11 states, including Rhode Island, had state policies that improve presumptive eligibility for Medicaid HCBS at the time of data collection, making it possible for people to go home to receive care after being in the hospital – rather than having to be admitted to a nursing home while their eligibility for Medicaid payments is being determined.

The research indicated that many states also have large numbers of people with low care needs living in nursing homes, indicating a lack of HCBS access and services. More than 20% of nursing home residents in Rhode Island have low needs – compared to 9% nationally.

Data confirms Major Workforce Crisis in nursing facilities across US

As to nursing homes and institutional care, the AARP’s 2023 Scorecard confirmed that a  major workforce crisis exists in facilities across the country. Across all states, wages for direct care workers are lower than wages for comparable occupations, with shortfalls ranging from $1.56 to $5.03 per hour. In Rhode Island, wages are $1.79 lower than other entry level jobs.   

Nationally, more than 50% of nursing staff in nursing facilities leave their job within a year (53.9% turnover rate). However, in Rhode Island, the rate is slightly better than the average, at 49.3% – with Montana, Vermont, and New Mexico experiencing the highest averages in staffing turnover.  

Staffing disparities are also a significant challenge, say researchers, noting that residents of nursing facilities with high admissions of Black residents receive almost 200 fewer hours of care per year compared to residents of facilities with high admissions of white residents. 

According to the LTSS Scorecard, only 22% of nursing facility residents live in a facility with a 5-star rating in the US – with less than the national average, about 20.2%, of Rhode Island residents living in a 5-star facility. Gaps in workforce and equity result in persistent problems in care, say the researchers. One measure, pressure sores, can be life-threatening as they can lead to bone or joint infections, cancer, and sepsis. In this measure, 10% of facility residents nationwide experienced a pressure sore.

Finally, this year’s Scorecard announced that there is progress being made to create innovative and effective alternatives to traditional nursing facility models. Specifically, the researchers say that 10 states, including Rhode Island, made strides in nursing home innovations, such as by utilizing Green House® Nursing Home availability and policies, which includes small facilities, private rooms, and other best practices.

AARP’s 2023 LTSS Scorecard identified recommendations that can fix the nation’s delivery of long-term care programs and services to enable seniors to age in place in their communities. It called for increasing support to the nation’s 48 million family caregivers, “who are the backbone of the long-term care system, providing over $600 billion in unpaid care, such as with paid leave, tax credits, and other mechanisms to address health and financial needs.”

AARP Rhode Island continues to call on the Rhode Island General Assembly to support the state’s 121,000 family caregivers by advocating for enhancements to the state’s Temporary Caregivers Insurance program.

Recommendations on enhancing Long-Term Services and Supports

The Scorecard’s recommendations also called for investing in states’ Home and Community-based Care Infrastructure, by increasing support and training for home health aides and home visits, supporting the ability to access and use medical devices and equipment, and updating key Medicaid regulations and payment models.  

To tackle the workforce crisis, a recommendation suggests that it is crucial to support both nursing facility and in-home workforce by improving recruitment and training, increasing pay, and expanding the ability of trained nurses, aides, community health workers and other paraprofessionals to take on some aspects of care. States can choose to enact and enforce staffing and related care standards.

A recommendation also calls on States to expand the use of innovative, effective models for nursing homes can improve both quality of care and quality of life, such as with smaller facilities and private rooms and to address inequities by investing to close the staggering gaps in access to quality care and facilities and staffing shortages.

(Editor’s Note:  During the pandemic, then Governor Gina Raimondo allocated $5 million towards 2 changes in nursing homes – making all rooms private and providing non-shared, private bathrooms – for all residents – efforts to follow up on this effort have not resulted in what happened to that initiative according to the RI Department of Health).

Another recommendation urges states to create multisector plans for aging and building of coalitions and age-friendly health systems, to help seniors to age in place at home by having affordable and accessible housing and transportation, improved community design, and comprehensive emergency preparedness plans.

Researchers also suggested the advancing innovation in cities, counties, and states by supporting comprehensive state- and community-wide aging plans and piloting new approaches and programs, like Green House® Nursing Homes and presumptive eligibility, that can then be scaled.

Finally, Climate Change is increasing national disasters, and the LTSS Scorecard recommends that every state have a sound emergency preparedness plan to support nursing home residentsin particular, in times of crisis – including natural disaster.

“AARP’s LTSS Scorecard shows some progress and innovation, but there’s still a long way to go before we have systems that allow people to age well, and independently, for as long as possible and support the nation’s 48 million family caregivers. It’s also clear some emerging issues deserve more attention – from whether nursing homes are prepared to confront natural disasters, to whether they have plans in place to maintain and grow their workforces,” says Susan Reinhard, Senior Vice President, AARP Public Policy Institute.

The LTSS Scorecard is a charitable project made possible by a grant from AARP Foundation, with support from The SCAN FoundationThe Commonwealth Fund, and The John A. Hartford Foundation, and has been updated every three years since 2011.

To view the full Scorecard and state-by-state information visit https://ltsschoices.aarp.org/ 

To view the Scorecard for specifically Rhode Island, go to:  https://ltsschoices.aarp.org/scorecard-report/2023/states/rhode-island.

To view Previous Scorecards (2011, 2014, 2017 and 2020) go to https://ltsschoices.aarp.org/scorecard-report/report-archive/

Uncompensated Cost of Caregivers is a Whopping $470 Billion

Published in the Woonsocket Call on November 17, 2019

Approximately 41 million unpaid family caregivers provided an estimated 34 billion hours of care in 2017 — worth a whopping $470 billion — to their parents, spouses, partners, and friends, according to the latest report in AARP’s Valuing the Invaluable series. The 2019 estimated value of family caregiving is based on 41 million caregivers providing an average of 16 hours of care per week, at an average value of $13.81 per hour. Previous AARP Public Policy reports were released in 2006, 2008, 2011 and 2015.

“It’s encouraging to see greater recognition of the emotional, physical and financial struggles that caregivers face,” said Susan Reinhard, senior vice president, AARP Public Policy Institute, in an April 14th statement announcing the release of the 32-page report. “But the demands on family caregivers are not just a family issue and we must continue to push for meaningful support and solutions,” says Reinhard.

Every caregiver, as well as their families, know the value of their efforts,” said AARP Rhode Island State Director Kathleen Connell. “In Rhode Island, the estimated total value of 114 million hours of work by the state’s 136,000 caregivers is $1.8 billion. The aggregate is astounding, making a clear case for supporting this vital commitment made by family and loved ones.”

“These numbers inspire our members who spend many hours at the State House as AARP Rhode Island advocacy volunteers,” Connell added. “They have helped pass key legislation — the CARE Act, paid caregiver leaves and many other key bills — that have given caregivers resources and opportunities to make their task less daunting. Caregivers are truly invaluable,” she says.

Putting a Spotlight on the Nation’s Caregivers

AARP’s report notes that the estimated $470 billion equates to about $1,450 for every person in the United States (325 million people in 2017). Its economic impact is more than all out-of-pocket spending on US health care in 2017 ($366 billion). Uncompensated care provided by caregivers is also three times as much as total Medicaid spending on long-term services (LTSS) and supports ($154 billion in 2016) and even the total spending from all sources of paid LTSS, including post-acute care ($366 billion in 2016).

The AARP researchers say that the estimate of $470 billion in economic value of uncompensated care is consistent with nearly two decades of prior research studies, all of which found (like the current study) that the value of unpaid family care vastly exceeds the value of paid home care.

The AARP report, Valuing the Invaluable: 2019 Update Charting a Path Forward, also explores the growing scope and complexity of caregiving, including an aging population, more family caregivers in the paid workforce, and the increasing amount of medical and nursing tasks entering the home.

According to the AARP report, family care givers, who provide day-to-day supports and services and manage complex care tasks, are becoming more diverse. While most family caregivers are women, about 40 percent are men who are providing more assistance than just driving to doctor’s appointments and grocery stores or paying bills. Like all caregivers, they are assisting a parent, spouse or friend with bathing and dressing, pain management, managing medication, changing dressings, helping with incontinence and even preparing special diets.

While a majority of baby boomers are providing caregiving services, a growing number of younger adults are now shouldering this responsibility, too. Nearly 1 in 4 (24 percent) are millennials (born between 1980 and 1996). Despite their low salaries, the young adults are spending more of their salary on caregiving expenses than other generations. The researchers estimated that this spending in 2016 was about 27 percent of their income.

About 60 percent of family caregivers are juggling a job and providing care, too. This will continue as aging baby boomers choose to remain in the labor force to bring additional income into their household. Workplace benefits for caregivers becomes become even more important as they face economic and financial strain in their later years.

For those employees who choose to leave their job to become a full-time caregiver, they risk both short-and long-term financial difficulties, say the researchers.

Finally, the researcher’s recommendations to better support family caregivers included developing a robust and comprehensive national strategy with the needs of an increasingly diverse caregiver population included; providing financial relief and expanding workplace policies; developing caregiver training programs; and expanding state and federal funding for respite programs.

More Work Needs to Be Done

The AARP report warns that the rising demand for caregivers with the graying of the nation’s population, shrinking families will drastically reduce the supply. In 2010, there were 7.1 potential family caregivers for every person age 80 and over. By 2030, there may be only 4.1 potential caregivers for every person age 80 and over, they say.

Although significant federal and state policy are already in place to assist the nation’s caregivers, more work needs to be done, say the researchers. They call on Congress and state lawmakers to keep pace with the changing demographic, social trends and needs of the family caregiver.

Resources and information on family caregiving, including AARP’s Prepare to Care
Guides, are available at http://www.aarp.org/caregiving.

Courtesy of AARP: Long-Term Care Data at Your Finger Tips

Published in the Woonsocket Call on September 2, 2018

Across the States 2018: Profiles of Long-Term Services and Supports, by Ari Houser, Wendy Fox-Grage, Kathleen Ujvari, of AARP’s Public Policy Institute, was released days ago. The jampacked 84-page AARP reference report gives state and federal policy makers comparable state-level and national data culled from a large number of research studies and data sources, some of the data gleaned from original sources.

AARP considers the 10th edition of Across the States, published for the past 24 years, “the flagship publication” to assist policy makers make informed decisions as they create programs, and policies for long-term services and supports (LTSS). State-specific data “is easily found, “at your fingertips,” claims AARP.

Across the States, released August 27, 2018, includes a myriad of aging topics include: age demographics and projections; living arrangements, income, and poverty; disability rates; costs of care; private long-term care insurance; Medicaid long-term services and supports; family caregivers; home- and community-based services (HCBS); and nursing facilities. Each state profile is a four-page, user-friendly, print-ready document that provides each state’s data and rankings.

Looking at Trends

AARP Public Policy Institute researchers have identified four trends in reviewing state data. Of most importance to Congress and state legislatures, Across the States gives a warning that America’s population is aging. The nation’s age 85 and over population, those most in need of aging programs and services, is projected to triple between 2015 and 2050, a whopping 208 percent increase.

But, by comparison, the population younger than age 65 is expected to increase by only 12 percent. The under age 65 population, currently, 85 percent of the total population, is projected to be 78 percent in 2050. Bad news for propping up the Social Security system with the worker-to – beneficiary ratio declining.

Across the States researchers say that the demographic shift of an increasing older population will have an impact on family caregiving. “The caregiver support ratio compares the number of people ages 45–64 (peak caregiver age) to the number ages 80+ (peak care need),” notes the report. Today, there are about 7 people ages 45–64 for every person age 80. By 2050, that ratio will drop to 3 to 1.

America’s older population is also becoming more diverse, reflecting overall trends in the general population. Across the States researchers note that the Hispanic population age 65 and over is projected to quadruple between 2015 and 2050.

Finally, Across the States report notes that State Medicaid LTSS systems are becoming more balanced due to the increase of state dollars going to fund home and community-based services (specifically to care for older people and adults with disabilities). But, this trend varies in level of balance, say the researchers, noting that: “The percentage of LTSS spending for older people and adults with disabilities going to HCBS ranged from 13 percent to 73 percent in 2016. While 40 states became more balanced, 11 states became less balanced for older adults and people with physical disabilities in 2016 compared with 2011.”

Taking a Closer Look

Across the States notes that the age 85 and over population is projected to significantly outpace all other age groups when the aging baby boomers begin turning age 85 in 2031. In 2015, people ages 85 and older made up 2 percent of the US population. By 2050, they are projected to represent 5 percent. By contrast, in the Ocean State the age 85 and over population was 2.7 percent of the state’s population. By 2050, look for the oldest-old population to inch up to 5.4 percent.

Throughout the nation the cost for private pay nursing facility care is well out of reach of most middle-income families. Across the States notes that in 2017 the annual median cost for nursing facilities is $97,455 for a private room and $87,600 for a shared room. But, in Rhode Island the annual cost is higher, with a private room costing $ 104,025 and $ 101,835 for a shared room. The researchers say that for the cost of residing in a nursing facility for one year, a person could pay for three years of home care or five years of adult day services.

Because of the high costs, most people go through their life savings paying for costly care and ultimately have to rely on the state’s Medicaid program. Nationally, the percent of Medicaid as primary payer in 2016 was 62 percent (61 percent in Rhode Island).

According to Across the States, family caregivers provided $470 billion worth of unpaid care in 2013, more than six times the Medicaid spending on home and community-based services. In Rhode Island, 134,000 provided 124 million hours of care annually with an economic value $ 1.78 billion. But, AARP’s report warns federal and state policy makers about the stark demographics in America’s future that will for the nation’s “Oldest Old” to scramble to find a caregiver, due to a shortage. Will state’s have the financial resources to fund programs and services to make up for this demographic reality.

For a copy of Across the States report and Rhode Island specifics, go to: http://www.aarp.org/content/dam/aarp/ppi/2018/08/across-the-states-profiles-of-long-term-services-and-supports-full-report.pdf.