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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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Watching over Nursing Homes once again – time for mandated Boosters

Published on December 20, 2021 in RINewsToday

Colder weather is keeping people more indoors now, and Thanksgiving and pre-Christmas gatherings are drawing people together in groups, small and large. Like other states across the country, Rhode Island is seeing a growing transmission of the COVID-19 Delta, and now Omicron variants. Some national sources say Rhode Island’s case rate is the highest.

According to WPRI’s COVID-19 tracking page, 73.7% of Rhode Island’s population, totaling 1,097,379 are fully vaccinated, 9.2 % are partially vaccinated, and 17 % have received no vaccination at all. “But some back-of-the-envelope math based on the state’s tally of daily doses shows nearly 251,000 people have received booster shots or third doses. And earlier this week, RI Gov. McKee publicly said the number is closer to 260,000 people,” says WPRI.

Taking a Snapshot of Vaccination Rates in Rhode Island’s Facilities

Just days ago, AARP Rhode Island called for increased boosters in the state’s nursing homes after releasing its new analysis of the latest data from AARP’s Nursing Home COVID-19 Dashboard.  The Dashboard revealed that only 54% of nursing home residents and 19% of staff in 79 Rhode Island nursing homes have received a COVID- 19 booster.

“With holiday gatherings on the horizon, these numbers are a cause for concern for state policy makers, as more than a year and a half into the pandemic, rates of COVID-19 cases in nursing homes are rising again nationally, along with increased community spread,” says AARP Rhode Island. While case rates declined slightly compared to the same time period last month, in AARP’s dashboard, looking week to week, the number of cases increased each week during the four weeks ending November 2, notes the state’s largest aging advocacy group serving more than 132,000 members aged 50 and older.

The Rhode Island-specific AARP Nursing Home Database says that resident cases grew from a rate of 0.64 per 100 residents in mid-October to 1.19 in mid-November. Staff cases decreased slightly from a rate of 0.96 to 0.82 during this same time period. Nursing home resident deaths from coronavirus rose slightly from a rate of 0.06 in mid-October to 0.11 in mid-November.

“COVID-19 continues to infiltrate America’s nursing homes with more than 1,500 new nursing home resident deaths nationally for the third consecutive month,” said AARP’s Rhode Island State Director Catherine Taylor. “Increasing vaccination rates—including boosters — among nursing home residents and staff is key to protecting our loved ones and getting the pandemic under control,” she says.

“AARP calls on nursing homes, state and federal authorities, and others to increase access to and receipt of COVID-19 boosters for both nursing home staff and residents,” Taylor added.

“As new variants emerge and vaccine immunity wanes, the low number of residents and staff who have received a booster creates an unacceptable level of risk since the disease spreads so easily in these environments,” says Tayler, urging Gov. Dan McKee “to prioritize the state’s most vulnerable population and take immediate action to addresses the relatively low percentage of nursing home residents and staff who have not received COVID-19 booster shots.”

According to AARP Rhode Island, while the percentage of residents and staff who have received boosters remain low, rates of those fully vaccinated—those who have received two COVID-19 shots—continue to slowly rise as of November 21. In Rhode Island, 99.10% of nursing home staff are fully vaccinated (the highest rate of any state in the nation) and 94.10% of nursing home residents.

The number of Rhode Island facilities reporting a shortage of nurses or aides rose sharply from 34.7% to 41.7% in the four weeks ending November 21, says the advocacy group. 

Rhode Island’s high vaccination rates can be tied to Rhode Island mandating all healthcare workers be vaccinated by Oct. 1, 2021, say John E. Gage, President and CEO of the Rhode Island Health Care Association. When the 30 day-compliance period ended, those who were unvaccinated were banned from entering the state’s healthcare facilities, he says, noting that termination resulted from failure to follow a reasonable policy set forth by their employer in compliance with Health Department’s emergency order. 

Yet, in at least one large nursing home facility, RINewsToday has learned, staff who refused to be vaccinated were either moved to non-patient-facing positions, or already worked in those positions, and allowed to keep working. An administrator said they are still working on encouraging 100% vaccination. Residents also have the right to refuse vaccination, and masks are required for patients outside of their rooms.

Families visiting had been restricted to the lobby, and at one time received a test in the parking lot prior to being able to enter. Today they are still screened for temperature, and they must wear a mask and complete a health symptom questionnaire. After a federal regulation went into effect several weeks ago easing access for families to visit, the screening also eased up and now tests are not required.

Any patient who is positive for COVID is moved to a quarantine area until fully recovered, and regular testing for patients and staff continues.

Some nursing homes are allowing families to take their loved one’s home for a Christmas holiday and then return after being with outside family and friends.

Gage notes that Rhode Island is ranked at No. 11 of states at a booster rate among residents of 54.1% compared to a national average of 38.4%.  Staff are boosted at 19.1% (#16) compared to a national average of 15.0%.  “Remember, individuals are not eligible for a booster until six months after their second dose of the vaccine series.  This will preclude some residents and staff, he says, stressing more credit should be given to the state’s health care facilities having the highest vaccine rates among staff and the second highest vaccination rate among residents.

According to Gage, the data released by the Centers for Medicare and Medicaid Services on Nov. 28, 2021 showed 99.38% of all workers in Rhode Island facilities are vaccinated – the highest (#1) vaccination rate for nursing homes in the country. Residents in Rhode Island nursing homes are 95.02% vaccinated – the second highest rate in the country.

To Booster or Not Booster, that is the Question

“With vaccines mandated in healthcare facilities and proof of vaccination being required to enter public places under the new Executive Order, it seems this would be a reasonable requirement for visitors to nursing homes,” says Gage, noting that this is not allowed according to the most recent guidance issued by the Centers for Med Centers for Medicare and Medicaid Services.

As to mandating booster shots for nursing facility staff, however, Gage warns, “staffing is at a crisis level already. We cannot afford to lose more staff with another mandate,” he says.

“The first rounds of vaccines were given most commonly by third-party sources such as CVS medical staff who came into the homes, similar as they do every year for flu shots”, said one nursing home administrator to RINewsToday – “For the boosters, we did them using our own staff, and ordering our supply from the RI Department of Health.”  Boosters were advised to be given 4-5 months from original vaccination completion – yet in the nursing homes most didn’t get them until 8 to 9 months – as late as the end of October.

However, Joseph Wendelken, Rhode Island’s Department of Health’s Public Information Officer, says that CVS and Walgreens are working to make COVID-19 vaccine booster doses available to all nursing facilities,. “If any facility is looking for additional support getting residents and workers vaccinated, we can provide that support,” he says.

Wendelken notes that there is a requirement for nursing home workers to complete a primary COVID-19 vaccine series, but there is no [federal or state] requirement for booster doses. “The data are becoming clearer and clearer that – especially with the Omicron variant – booster doses are absolutely critical,” says Wendelken.

“Residents [of nursing homes and assisted living facilities] were among the first to get vaccinated so that means their immunity has waned and boosters are needed to avert significant outbreaks and deaths,” says  Maureen Maigret, former director of the R.I. Department of Elderly Affairs and chair of the Aging in Community Subcommittee of the Long Term Care Coordinating Council. “It is critical that booster shots are offered to all nursing home and assisted living residents especially now that visitation has opened up and visitors do not have to show proof of vaccination,” she says.

As of December 15th, the RI Department of Health Department shows at least 114 new cases in nursing homes and assisted living facilities in the past seven days, says Maigret. “We must  remember that over 1,700 residents died as a result of COVID in these facilities and providing booster shots is our best defense against more fatalities for this vulnerable population.”  

Even though it is not a federal policy, a growing number of state officials across the country are calling for the definition for being fully vaccinated to now include the booster shot. With Rhode Island seeing a surge in COVID-19 cases and an increase in hospitalizations due to Delta and Omicron variants spreading throughout the state, many (including this writer) express it’s time for Governor Dan McKee to now mandate booster shots for nursing facility staff.  More important, it must become a priority for the Rhode Island Health Department to make sure that every consenting nursing facility resident receives a booster, too.

President Biden is set to address the country on Tuesday, at a time to be announced. There is speculation whether the term “fully vaccinated” will now include not just the two original vaccinations but the booster as well.

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. For more information on how coronavirus is impacting nursing homes and AARP’s advocacy on this issue, visit www.aarp.org/nursinghomes. Medicare.gov’s Care Compare website now offers information about vaccination rates within nursing homes and how they compare to state and national averages.

RI Nursing Homes with new cases (more than 5) in the past 14 days:

Berkshire Place, Providence – 10 to 15

Jeanne Juga Residence, Pawtucket – 5 to 9

Oak Hill Health Center, Pawtucket – 20 to 24

Pawtucket Falls Healthcare, Pawtucket – 10 to 14

Summit Commons, Providence – 5 to 9

West View Nursing, West Warwick – 10 to 14

The full Nursing Home COVID-19 Dashboard is available at  www.aarp.org/nursinghomedashboard. For more information on how coronavirus is impacting nursing homes and AARP’s advocacy on this issue, visit www.aarp.org/nursinghomes. Medicare.gov’s Care Compare website now offers information about vaccination rates within nursing homes and how they compare to state and national averages.

It’s time. Staff vaccinations required for nursing homes as 10 RI facilities see new COVID cases

Published in Rhode Island News Today on August 24, 2021

With the COVID-19 Delta variant spiking across the country especially among the unvaccinated, last Wednesday, President Joe Biden announced at an afternoon address at the White House that the U.S. Department of Health and Human Services will require nursing homes to require all workers to be fully vaccinated against COVID-19 as a condition for those facilities to continue receiving federal Medicare and Medicaid funding.

According to federal data, of the 1.6 million nursing home workers across the  nation, about 540,000 — 40 percent of the work force — are unvaccinated.  

Since the spread of the Delta variant, there has been a rise in the number of COVID-19 cases, especially in those states that have low rates of vaccinated workers. Both the U.S. Centers for Disease Control and Prevention (CDC) and Centers for Medicare & Medicaid Services (CMS) data confirm a strong relationship between the increase of COVID-19 cases among nursing home residents and the rate of vaccination among nursing home workers.

These new emergency federal regulations, crafted  by CDC and CMS, would apply to nearly 15,000 nursing home facilities, which employ approximately 1.6 million workers and serve approximately 1.3 million nursing home residents.

Rhode Island Gov. Dan J. McKee, along with other states, has already taken a similar step to protect nursing home residents by requiring all staff to be vaccinated and the new federal mandate will ensure consistent and equitable standards throughout the country. 

At a COVID-19 update held at the state the state capitol in early August, McKee called for the new vaccine mandate (as a term of employment) to take effect on Oct. 1st.

On August 23rd, Pfizer’s vaccine was fully approved by the FDA. Approvals of Moderna, Johnson & Johnson and booster shots are expected to follow soon.

According to CMS, the new mandate is a key component of protecting the health and safety of nursing home residents and staff by ensuring that all nursing home staff receive COVID-19 vaccinations. Over the past several months, millions of vaccinations have been administered to nursing home residents and staff, and these vaccines have shown to help prevent COVID-19 and have proven to be effective against the Delta variant.

“Keeping nursing home residents and staff safe is our priority. The data are clear that higher levels of staff vaccination are linked to fewer outbreaks among residents, many of whom are at an increased risk of infection, hospitalization, or death,” said CMS Administrator Chiquita Brooks-LaSure in a statement announcing the new vaccine mandate.  “We will continue to work closely with our partners at the CDC, long-term care associations, unions, and other stakeholders to advance policies that keep residents and staff safe. As we advance these new requirements, we’ll work with nursing homes to address staff and resident concerns with compassion and by following the science,” she said.

CMS says that it’s requiring all nursing home staff to be vaccinated is in keeping with the federal agency’s authority to establish requirements to ensure the health and safety of individuals receiving care from all providers and suppliers participating in the Medicare and Medicaid programs. About 62% of nursing home staff are currently vaccinated as of August 8 nationally, and vaccination among staff at the state level ranges from a high of 88% to a low of 44%. The emergence of the Delta variant in the United States has driven a rise in cases among nursing home residents from a low of 319 cases on June 27, to 2,696 cases on August 8, with many of the recent outbreaks occurring in facilities located in areas of the United States with the lowest staff vaccination rates.

Last May, CMS issued new regulations that require Long-Term Care (LTC) facilities and Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) to educate residents, clients, and staff about COVID-19 vaccination and, when available, offer a COVID-19 vaccine to these individuals. These regulations also mandate that LTC facilities report weekly COVID-19 vaccination data for residents and staff to the CDC’s National Healthcare Safety Network (NHSN).

CMS will continue to analyze vaccination data for residents and staff from the CDC’s National Healthcare Safety Network (NHSN) data as an additional method of compliance monitoring and in keeping with current practice, as well as deploy the Quality Improvement Organizations (QIOs)—operated under the Medicare Quality Improvement Program—to educate and engage nursing homes with low rates of vaccinations.

CMS strongly encourages nursing home residents and staff members to get vaccinated as the Agency undergoes the necessary steps in the rule-making process over the course of the next several weeks. CMS expects nursing home operators to act in the best interest of residents and their staff by complying with these new rules, which the Agency expects to issue next month.  CMS also expects nursing home operators to use all available resources to support employees in getting vaccinated, including employee education and vaccination clinics, as they work to meet this staff vaccination requirement.

Rhode Island Long Term Care Facilities with new cases in the last 14 days (as of 8/14/2020):

These RI nursing homes are on the RI Dept. of Health list with increased cases –

Alpine – Coventry – 5-9 cases

Avalone – Warwick – less than 5

St. Antoine – North Smithfield – less than 5

Woonsocket Health – Woonsocket – less than 5

All America Assisted Living – Warwick – less than 5

Anchor Bay – Johnston – less than 5

Smithfield Woods – Smithfield – less than 5

Sunrise House – Providence – less than 5

Bridge at Cherry Hill – Johnston – 5-9

Tockwotton – Providence – less than 5

AARP Strongly Supports Biden’s Vaccine Mandate in Nursing Homes 

In response to the Biden Administration directing all nursing homes that receive Medicare or Medicaid funds to require vaccinations for all staff, Nancy A. LeaMond, AARP Executive Vice President and Chief Advocacy & Engagement Officer, stated:  

“The Administration’s announcement today requiring vaccinations for nursing home staff is a significant step in the fight against this pandemic. Around 30% of COVID deaths have been among residents and staff in nursing homes and other long-term care facilities, even though they represent less than 1% of the population. As the new variants are emerging, facilities cannot let preventable problems be repeated. Increasing vaccination rates in nursing homes is one of the most common sense and powerful actions we can take to protect the lives of vulnerable older adults.”

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.

Don’t Just Single Out Nursing Homes 

“We appreciate the Administration’s efforts to increase COVID-19 vaccinations in long term care. Unfortunately, this action does not go far enough. The government should not single out one provider group for mandatory vaccinations. Vaccination mandates for health care personnel should be applied to all health care settings. Without this, nursing homes face a disastrous workforce challenge,” warns Mark Parkinson, president and CEO of the American Health Care Association and National Center for Assisted Living (AHCA/NCAL) 

“Focusing only on nursing homes will cause vaccine hesitant workers to flee to other health care providers and leave many centers without adequate staff to care for residents. It will make an already difficult workforce shortage even worse. The net effect of this action will be the opposite of its intent and will affect the ability to provide quality care to our residents. We look forward to working with the Administration in the coming days to develop solutions to overcome this challenge,” says Parkinson.

The full Nursing Home COVID-19 Dashboard is available at www.aarp.org/nursinghomedashboard. For more information on how COVID is impacting nursing homes and AARP’s advocacy on this issue, visit www.aarp.org/nursinghomes.