The crafting of Rhode Island’s first State Plan on Caregiving

Published on February 28, 2022 in Rhode Island News Today

Rhode Island has the distinction of having one of the highest percentages of adults aged 85 and over in the country. In 2017, out of a population of 1,060,00 there are more than 136,000 caregivers providing 114 million hours of care, says AARP Rhode Island.  More Rhode Islanders will be thrust into caregiving roles in the coming years.

In response to the continued aging of Rhode Island’s population, the Rhode Island Office of Healthy Aging (OHA) and Family Caregiver Alliance of Rhode Island officially released Rhode Island’s first State Plan on Caregiving.  The state’s new Plan for Caregivers serves as the framework for the crafting and implementation of new policies, as well as the expansion of various existing programs and partnerships to assist caregivers. The Plan serves to strengthen and advance the shared mission of OHA and the Family Caregiver Alliance of Rhode Island at the United Way (FCARI)  to promote choice, independence, empowerment, and the overall well-being of older adults, individuals with disabilities, and their caregivers.  FCARI is supported with funds from OHA.

As an advocate for caregivers throughout the state, The FCARI serves as the administrator of the 29-page Plan which extends through Sept. 2023. 

A Call for Supporting Rhode Island’s Caregivers

“The COVID-19 crisis has exacerbated many of the challenges faced by our older adults and their caregivers, particularly social isolation,” said Interim Director Michelle Szylin announcing the release of this report on Sept 24, 2021. “Caregivers have a tough job and often receive little support. Through the development of this State Plan, we’re showing our commitment to strengthening resources available for our caregivers and better supporting the important work they do across our state,” she says.

Adds Maryam Attarpour, Program Manager, Family Caregiver Alliance of Rhode Island at the UWRI, “Caregiving has been and will always be a major part of the fabric of our society.” Attarpour says that the new State plan puts the needs of family caregivers first. “Our goal is to create a state that is equitable, inclusive, and supportive of our family caregivers, and the loved-ones they care for,” she says.

According to the statement, the State Plan on Caregiving also builds on the state’s existing efforts to meet the needs of Rhode Island caregivers of any age.  It provides an overview of the existing support network available for family caregivers to access as well as addresses the work that remains to ensure equitable access to resources and advocacy. 

One of the key areas of support that the plan focuses on is developing a comprehensive, robust website and social media presence for FCARI that will serve as a hub of information for resources and information for caregivers. It will also ensure diversity, equity, and inclusion for Rhode Island Caregivers and those for whom they care, too.

The State Plan will also ensure that the caregivers of Rhode Island seeking long term services and supports are identified and provided with information assistance and advance  opportunities for digital access (iPads, notebooks, computers and phones) to better serve and support Rhode Island Caregivers.

Over the years, the Rhode Island General Assembly has worked closely with aging advocates to enhance supports and resources for the state’s caregivers.  The State Plan calls on lawmakers to review existing laws to determine if they need to be refined or better funded.  It also suggests that legislation that has been submitted and not passed as well as laws and policies from other states be reviewed for “relevancy for supporting Rhode Island family caregivers.

Putting a Face on Family Caregivers

On Feb. 15th, Maureen Maigret, Chair of the state’s Long-Term Care Coordinating Council’s Aging in Community Subcommittee, told members of the Rhode Island House Oversight Subcommittee on Aging & Senior Services, the importance of hammering out sound policy to support the state’s growing number of caregivers.

Maigret painted a picture of the typical care recipient, citing the 2020 Report, Caregiving in the U.S., to the attending House lawmakers. “Eighty nine percent of the care recipients are a relative, with 50% being either a parent or parent-in-law, spouse/partner (12%), grandparent/grandparent-in-law (8%), sibling/sibling-in-law (7%), adult child (6%) or nonrelative (10%), she said, noting that the average care recipient’s age is 68.9.

While 61% of the caregivers are women, 39% are men, adds Maigret, noting that 61% are white, 14% African American and 17% Hispanic.  The age of most caregivers falls between ages 60-65, says Maigret, noting that younger adults also find themselves having to provide caregiving chores.  Twenty-four percent of persons ages 18-34 and 23% of person’s ages 35-49.

It’s not easy to be a caregiver, says Maigret. She warned that caregivers should be considered “the hidden patient” because they are at risk for becoming depressed, extremely fatigued, stressed, feeling overwhelmed, being socially isolated, losing income and having physical health problems.

Maigret’s presentation was followed by a panel led by Acting OHA Director, Michelle Szylin, and her staff who provided information on programs OHA offers to assist caregivers including subsidized respite, home care and adult day services and special pilots to support those caring persons with Alzheimer’s disease.

“Although our legislature and Governor have been supportive of funding programs to support caregivers, the growth of our older population means more persons will need to become caregivers,” said Maigret. “We need better state programs and services to provide physical, emotional and financial support, and enhanced access to information about available resources,” she said.

Maigret adds: “There is also an urgent need to address the direct care worker crisis by providing the workers with fair and competitive wages.  Many caregivers need to supplement the services they provide with paid caregivers if they are in the workforce, or need to take care of other family needs. Yet due to the low wages paid for personal care workers, it is not always possible to find such help.”

For a copy of the State Plan on Caregiving go to https://fcari.org/state-plan-on-caregiving/

RI State Budget must address long term care staffing crisis

Published in RINewsToday on February 21, 2022

As Rhode Island and states throughout the country loosen COVID-19 mask restrictions with the number of new coronavirus cases dropping by more than 75% since the highs in mid-January, and hospital admissions and death rates declining, AARP Rhode Island warns that now is the time to take steps to protect nursing facility residents from future COVID-19 surges in the state’s nursing facilities. 

In a statement released on Feb. 18, 2022, AARP Rhode Island, the state’s largest aging advocacy group for seniors, says that their “AARP’s Nursing Home COVID-19 Dashboard”, covering the four-week period ending January 23rd “paints a grim picture of the devastation caused by the surge of the Omicron variant in America’s nursing homes and underscores the need for booster shots to protect both residents and staff.”

A snapshot of COVID-19’s impact in nursing facilities

AARP Rhode Island’s statement notes that facility staff cases were more than 11 times as high nationwide as in last month’s Dashboard (covering the four weeks ending December 19), with resident cases nationwide more than eight times as high.

“Here in Rhode Island, staff cases increased nearly tenfold from the rate of 2.96 per 100 residents in December to 24.5 during the same time period in January. Resident cases spiked from a rate of 2.6 to 15.8. Nursing home resident deaths from COVID-19 increased from 0.18 per 100 residents in December to 0.30 in January,” says AARP Rhode Island.

AARP’s Nursing Home COVID-19 Dashboard also shows that as of January 23, 72% of nursing home residents in Rhode Island were fully vaccinated with a booster dose, an increase from mid-December’s 61.8%. Meanwhile, 35.6% of direct care staff had received a booster, an increase from 24.8% in mid-December.

“We know boosters save lives; we know they help prevent infections and severe illness,” said Catherine Taylor, State Director of AARP Rhode Island, which serves more than 130,000 members aged 50 and older in the Ocean State. “Even though the worst of the Omicron surge is hopefully behind us, the pandemic isn’t over. The delivery of booster doses to nursing home residents and staff must remain a high priority as these residents are among the most vulnerable to COVID-19 and its variants.,” she says, noting that the number of facilities in Rhode Island reporting a shortage of nurses or aides has also increased from 32.9% to 52.1%. in the four weeks ending January 23.

“The last two years have highlighted the chronic, ongoing issues that have long plagued nursing homes—such as the shortage of direct care workers, which is now a crisis; low pay that drives workers to take second and third jobs in multiple facilities; and shared rooms and bathrooms (for residents in facilities) – and that are chief contributors to poor infection control,” said Taylor.

John E. Gage, MBA, NHA, President & CEO, Rhode Island Health Care Association, says “AARP Rhode Island’s story is based mostly on national numbers, and RI’s situation is actually quite good” and its data recognizes the achievements of the state’s facilities as deserved. 

Nursing facilities continue to follow strict Covid-19 guidance provided by Rhode Island Department of Health (RIDOH) following CDC Guidance, says Gage, noting that residents and staff are among the highest vaccinated and boosted in the nation which has helped limit the impact of the latest Omicron surge.

“Numbers are dropping as quickly as they spiked, and we are hoping for a return of greater “normalcy” as we enter the Spring,” adds Gage as staff continue to utilize full PPE when providing care to residents, and masks are used at all times in nursing homes. They also continue to follow quarantine and isolation guidance for residents and staff as provided by the RIDOH – this guidance is updated frequently”, he says.

“Staff left early on in the pandemic because of fear of Covid. Remaining staff worked tirelessly throughout the first wave of the pandemic without vaccines and without the availability of sufficient PPE,” recalls Gage, stressing that “they are true heroes, but they are burned out, and many have chosen to leave for higher wages or less stress.” 

“Those who remain are working overtime – picking up shifts to help cover for the 20% vacancy rates in RI facilities,” he says, adding that facilities are paying higher wages, overtime, and bonuses to their existing staff, and they are forced to use temporary nurse staffing agencies at 4 times the pre-pandemic level.

The pandemic and RI’s staffing crisis

Now, in the midst of this crisis, facilities are expected to comply with the minimum staffing mandate passed during last year’s legislative session, says Gage, warning that it is impossible for the state’s 77 facilities to comply with the mandated staffing levels. “There are not enough willing applicants, Rhode Island Medicaid reimbursement does not allow facilities to make meaningful pay rate increases, and the staffing mandate is woefully underfunded,” he charges. In fact, when fully implemented, the unfunded mandate that is the minimum staffing statute will result in a $47 million/year reimbursement shortfall – that on top of the $50 million/year in pre-existing underfunding,” he says. 

“Then, when nursing homes are unable to meet impossible staffing thresholds in the midst of this workforce crisis, they will be fined millions of dollars for non-compliance (RIDOH estimated $8.3 million in fines in the first quarter alone). These fines will actually divert resources from nursing homes and further imperil the care and services our elder residents who reside in nursing homes so deserve. This is a true crisis in the making,” according to Gage.

“The intent of the minimum staffing statute was to provide more caregivers and better care but did not provide the resources to do so – the workforce or the appropriate reimbursement to pay that workforce. The state’s facilities have always had a reputation of providing among the best nursing home care in the country. That reputation is in peril now,” adds Gage.

“The pandemic will be with us for a while [and that] has highlighted the need to reimagine long term supports and services,” says  Maureen Maigret, state’s Long-Term Care Coordinating Council Aging (LTCCC) in Community Subcommittee.  “We need to provide incentives through low cost loans and reimbursement rates for nursing homes to convert to private rooms and bathrooms which would go a long way to prevent the spread of infections. We also need to enhance access to home and community-based services to give more persons the choice to get care at home.

And finally, we must urge our Governor and legislature to take immediate steps to address the workforce crisis by ensuring our direct care workers receive fair, competitive wages and opportunities for specialized training and advancement,” says Maigret, a former Director of the state’s Department of Elderly Affairs (renamed the Office of Healthy Aging).

Increasing Medicaid payments 

Last month, Gov. Dan McKee submitted a $12.8 billion state budget to address the pandemic, build more affordable housing, also providing increased funding to schools and small businesses.  In its statement, AARP Rhode Island called on the Rhode Island General Assembly to ” address the direct care workforce shortage through a combination of wage increases, paid training, professional development and enhanced benefits, and enact an enhanced rate for single rooms in nursing homes, retroactively.” Maigret said: “These are necessary for transforming how we provide nursing facility care. However, the Governor and lawmakers must address the immediate and urgent need to raise wages for direct care staff working in home and community programs as well,” she said, noting that the average wait time to get home care services paid by Medicaid is more than three months.”

Maigret adds: “It’s unacceptable that so many people wait so long to receive services due to the state’s failure to increase provider rates to allow them to pay our workers competitive and fair wages. It also inhibits reaching the state’s goals for providing people choice and receiving services in the least restrictive setting.”  

“The demographics are undeniable,” says Gage, noting that Rhode Island’s 85+ population will double in the next 15-20 years. “ Of course, we want everyone to have the option to live in the setting most appropriate for their needs.  However, this impending wave will overwhelm the state’s entire LTC continuum – home care, assisted living residences and nursing homes,” says Gage.

Gage calls on McKee and Rhode Island lawmakers to make sure that Rhode Island Medicaid ensures the long-term viability of the entire LTC continuum, including nursing facilities, to meet the needs of the most fragile Rhode Islanders today and in the coming years as demand will inevitably rise.

“The recently released AARP Nursing Home Dashboard data underscores the continued necessity of this advocacy, and the need for the legislature to pass these critical reforms this year,” says AARP’s Taylor.

Don’t forget the state’s most vulnerable

The AARP Nursing Home COVID-19 Dashboard  analyzes federally reported data in four-week periods going back to June 1, 2020. Using this data, the AARP Public Policy Institute, in collaboration with the Scripps Gerontology Center at Miami University in Ohio, created the dashboard to provide snapshots of the virus’ infiltration into nursing homes and impact on nursing home residents and staff, with the goal of identifying specific areas of concern at the national and state levels in a timely manner.

The full Nursing Home COVID-19 Dashboard is available at  www.aarp.org/nursinghomedashboard, and an AARP story about this month’s data is available here.

For more information on how coronavirus is impacting nursing homes and AARP’s advocacy on this issue,

visit www.aarp.org/nursinghomesMedicare.gov’s Care Compare website now offers information about vaccination and booster rates within individual nursing homes and how they compare to state and national averages.

“Living Apart Together” couples need to discuss caregiving, health issues with family, each other

Published on February 14, 2022 in Rhode Island News Today

With divorce rates soaring since the 1990s, and aging baby boomers 50 and older having doubled in number, this trend, along with longer life expectancy and those becoming widowed, has resulted in many older adults forming new partnerships later in life. Researchers call this new phenomenon, “Living Apart Together’ (LAT),” as an historically new form of family that allows an intimate relationship without sharing a residence. And it is gaining popularity as an alternative form of commitment. 

According to Couple Therapies, Inc., a 2016 national survey by legal scholar Cynthia Grant Bowman, as many as 9% of older American couples have Living Apart Together (LAT) relationships.

A year after the death of my oldest sister, Mickey, in 2008, my brother-in-law, Justin, an endodontist who had become a widower, found love and began to date Ruth, also widowed. Over 10 and a half years (from their late 60s to late 70s), the couple shared companionship by LAT, traveled to interesting locations for his medical conferences, even traveling overseas to France and Italy. Both enjoyed dining out, attending theater, and enjoying music. “Our relationship was wonderful for this stage in our lives,” recalls Ruth. “At our age in life, and both having grown children, it was just easier to maintain our own homes and our separate lives, but we did many things together,” she said. 

Like Justin and Ruth, millions of older persons are discovering the benefits of LAT. It allows couples to enjoy autonomy in their own living space and to maintain pre-existing relationships with their friends and children. LAT couples are able to be in a loving, long-term, intimate relationship where they have emotional support without having to cohabitate or be married. Often, and especially for those who have been widowed, there is a desire to show respect to their loved one but not engaging in a formalization of the relationship through the legal and religious act of marriage.

LAT is being studied by researchers at the University of Missouri (UM) who say that while the trend is well understood in Europe, it is lesser known in the United States. This means that with increased longevity, it becomes challenging as to how LAT partners can engage in family caregiving or decision-making, and how it could affect family needs.

“What has long been understood about late-in-life relationships is largely based on long-term marriage,” said Jacquelyn Benson, an expert of older adult relationships from the University of Missouri (UM), in a Feb. 9, 2017, statement discussing their LAT partnered research. “There are now more divorced and widowed adults who are interested in forging new intimate relationships outside the confines of marriage. Recent research demonstrates that there are other ways of establishing long-lasting, high-quality relationships without committing to marriage or living together. However, U.S. society has yet to recognize LAT as a legitimate choice. If more people—young and old, married or not—saw LAT as an option, it might save them from a lot of future heartache,” she says.

In this UM study, “Older adults developing a preference for living apart together,” Benson and Marilyn Coleman, Curators Professor of Human Development and Family Science, interviewed adults who were at least 60 years old and in committed relationships but lived apart. The researchers found that couples were motivated by desires to stay independent, maintain their own homes, sustain existing family boundaries, and remain financially independent. Couples expressed challenges defining their relationships or choosing terms to properly convey the nature of their relationships to others, they say, many citing that traditional dating terms such as ‘boyfriend’ and ‘girlfriend’ to be awkward terms to use at their ages.

“While we are learning more about LAT relationships, further research is needed to determine how LAT relationships are related to issues such as health care and caregiving,” Benson said. “Discussions about end-of-life planning and caregiving can be sensitive to talk about; however, LAT couples should make it a priority to have these conversations both as a couple and with their families. Many of us wait until a crisis to address those issues, but in situations like LAT where there are no socially prescribed norms dictating behavior these conversations may be more important than ever,” she says.

Another UM research study, “Living apart together relationships in later life: Constructing an account of relational maintenance,” Benson found that if more people—young and old, married or not—saw ‘Living Apart Together’ as an option, it might save them from a lot of future heartache. However, caregiving needs might cause such couples to change living arrangements.

These couples choosing to “live apart” are tested when their partner requires caregiving. “While autonomy is paramount for these couples, participants in the study also emphasized the importance of having a flexible mindset about their relationships, especially when one partner needs additional care,” she says, noting that certain family issues that become important in your later years, like caregiving or medical decision-making, could be difficult to navigate for the LAT couples and their relatives.

“The societal standard for elder caregiving in the United States is to expect spouses and adult children to step in as primary caregivers; however, we do not know-how these expectations apply in LAT arrangements,” Benson said in a statement releasing the findings Jan. 8, 2018, study. “In our research we are learning that, while living apart seems to be almost universally viewed as a necessity for maintaining relationship satisfaction for these couples, paradoxically couples also are willing to make changes in living arrangements to provide caregiving support to one another,” she said. She found that for most of these couples, living apart and being independent was considered ideal.  Participants in the study recognized that keeping separate homes was the simplest strategy for safeguarding their autonomy, she said.

Benson cautioned against making any conclusions about actual caregiving behaviors. “Most of the individuals we interviewed had not been tested by the realities of caregiving [yet] within their current LAT partnerships. It will be important to follow LAT partners over time to see if their willingness transforms into action and understand the mechanisms that explain these care provision decisions,” she said. Benson called for further research to better understand repartnering in later life.