Path to an “age-friendlier” budget

Published in RINewsToday on June 5, 2023

After a 47:10 minute meeting on Friday night, the House Finance Committee approved a $14 billion budget for the 2024 fiscal year that commits funding toward addressing the housing crisis (top priority), supports business development and makes education funding more equitable while limiting the use of one-time revenue to one-time expenditures. 

The passed budget reflects the May revenue estimate that was $61.2 million lower than projected last November. 

On June 2, 2023, the budget passed on a partisan vote of 13-3, sending the budget bill (2023-H 5200A) to the full House of Representatives, which is slated to take it up June 9 at 2:30 p.m. Changes could be made.

Hammering Out a Compromised Budget 

At a news conference held on Friday at 3:30 p.m. before the vote, House Speaker K. Joseph Shekarchi  (D-Dist. 23, Warwick) compared the politics of hammering out the state budget proposal to Democratic and GOP leadership making a deal to avoid a national default earlier this week.  “Nobody, including me and everyone else here, got everything they wanted,” he said, noting that the state budget required “compromise.”  

“Our goal with this budget is to support Rhode Islanders’ needs while responsibly preparing for our future. Our top priority, of course, is addressing our housing crisis, and we have worked hard, in collaboration with Governor McKee and our colleagues in the Senate, to identify the most effective ways we can direct the funding we have toward solutions that will help create more affordable housing access. This budget also strengthens our efforts to provide educational opportunities in K-12 and higher education and supports businesses, working Rhode Islanders, retirees and those struggling to meet their families’ basic needs,” said Shekarchi, in a statement announcing the House Finance Committee’s passage of the budget.

“At the same time, we are being realistic. Given the end of the federal funding related to the pandemic, we need to plan not only for next year, but for the following years, when we are not going to have the level of revenue we’ve been fortunate enough to have for the past few years. We are spending our remaining federal COVID funding and our available revenue on one-time investments rather than creating long-term commitments that we can’t sustain,” he said.  

Adds Marvin L. Abney (D-Dist. 73, Newport, Middletown), chairman of the House Finance Committee: “This budget was carefully crafted so that our residents, particularly our most vulnerable, retain the supports and assistance that they and their families need, so that our businesses have the ability and opportunity to grow, and so that Rhode Island is situated to withstand a very possible financial downtown that will affect both our state and national economies.  Responsible, compassionate and thoughtful decisions were made to create a budget that will benefit all Rhode Islanders and this budget positions the state to be as competitive as possible into the future.”

Taking a Look at Aging Programs and Services 

“I am extremely pleased the budget passed by the House Finance Committee contains important funding that will benefit seniors as well as older adults with disabilities,” says Maureen Maigret, chair of the Aging in Community Subcommittee of Rhode Island’s Long-Term Care Coordinating Council and policy consultant and board member of the Senior Agenda Coalition of RI. “The Office of Healthy Aging (OHA) will receive an additional $250,000 in general revenue for the Aging and Disability Resource Center (ADRC). The ADRC provides counseling about services and benefits and assistance with the application process.  Advocating to strengthen the ADRC (called the POINT) was a high priority for the Senior Agenda Coalition of RI and the Aging in Community Subcommittee of the Long Term Care Coordinating Council,” says Maigret.

According to Maigret, this is the first time that ADRC will receive state funds. To date, it has operated with limited federal dollars and too many persons are not aware of the program. The state funding can be matched by federal Medicaid funds. “ADRC services are critically important for older adults, persons with disabilities and family caregivers, as they attempt to find appropriate services and navigate a sometimes-fragmented system of care, says Maigret.

Maigret says that the budget also adds funds to support two new staff positions for OHA’s protective services unit to deal with increasing reports of elder abuse and exploitation. OHA’s Adult Protective Services received over 6,000 calls last year. The additional funding for these positions will ensure that reports are investigated in a timely manner and protect older adults at risk of abuse and neglect. 

Other notable additions to the budget include an increase in the Personal Needs Allowance (PNA) for nursing home residents on Medicaid to $75/month (from $50.) This amount had not been adjusted since 1999, says Maigret noting that the additional funding will help thousands of nursing home residents pay for such items as haircuts, clothing and, telephone service.

“The House Finance Committee also added $250,000 to increase funding for the Livable Home Modification grant program to $0.8 million,” says Maigret, noting that the program helps pay for costs of support home modifications and accessibility enhancements to allow individuals to remain in community settings. And of course, the funds dedicated to addressing housing affordability although not specific to the older population will benefit them,” adds Maigret. “Overall, these budget additions and the additional funds for community senior services and Meals on Wheels proposed by the Governor demonstrate a continued commitment on the part of our state leaders to address the needs of our growing older population,” she says.

The budget didn’t reinstate the retiree Cost of Living Adjustments (COLAs) eliminated in 2011.  “Once again, retired state workers, teachers, and municipal retirees who are part of the state retirement system have been shown how little they are valued by state legislators”, comments Susan Sweet, a former state associate director of elderly affairs and an advocate for low-income elders. “Although there were many bills in to restore the COLA or at least provide a token payment to these retirees, it appears that no funds at all are being directed towards that purpose.  This is a great disappointment to so many folks who faithfully performed their duties and were stripped of their promised pensions. No wonder that teachers and government workers are reluctant to spend their career lives in the public sector” she states.

Is Proposed House Budget “Age Friendly” ?

Maigret believes that the state has taken some positive steps toward becoming “age friendly” especially if we think of age-friendly with an intergenerational lens. Items that address children and youth such as expanded tuition assistance of Rhode Island colleges are important.  “However, we still have a long way to go in many of the domains for age friendliness,” she notes, “especially in the area of economic security for older adults as many live with income less than $25,000 relying mostly on fixed incomes.” 

Maigret calls on the Rhode Island General Assembly to fund mini-grants to communities to incentivize them to “look at their comprehensive plans with age-friendly lens.” 

Here is the link to the bill to establish the budget:

Here is the link to the entire budget and every article (as well as how it compares to the budget as submitted by the Governor in January):  https://www.rilegislature.gov/Budget/SitePages/FY24.aspx.

Here is a link to a press release which contains a summary of the highlights of the budget:

To watch the House Finance Committee meeting, go to https://ritv.devosvideo.com/show?video=defebab838c1&apg=52ab780b.

A close look on “Facts and Figures” about Alzheimer’s

Published in RINewsToday on April 3, 2023

For over five years, Janet Bryant, 65, has been a caregiver for her 67-year-old husband, Paul, who suffers from Alzheimer’s disease. Their daughter, Alison, and husband Ryan, living in the condo above her parents, step in to assist with caregiver duties when needed. 

“It’s often a long day when you’re caring for someone with dementia,” says Janet, who handles all financial, medical and household tasks. Even when Paul helps out with a few tasks he must be closely supervised, she says. And you must be watchful. “A few weeks ago, Paul was trying to make a cup of tea, and put the metal tea kettle in the microwave, causing the handle to burst into flames. I disabled the microwave and now I make him his tea. His wife of 47 years says he can’t be left alone, and gets lost in their small condo. 

Janet acknowledges that the long day often continues into night, as Paul has trouble finding the bathroom or tries to roam around. 

Janet’s experiences as a caregiver taking care of a loved one with Alzheimer’s disease is not uncommon. The newly released Alzheimer’s Disease Facts and Figures reports that 6.7 million people aged 65 and over, like Paul, are living with Alzheimer’s or other dementias in the United States — it’s one of the costliest conditions to society and is projected to reach $345 billion, a $24 billion increase from a year ago. By 2050 these costs could rise to nearly $1 trillion.

In 2022, like Janet, more than 11 million caregivers provided unpaid care for people with Alzheimer’s or other dementias, providing an estimated 18 billion hours of unpaid assistance — a contribution valued at $339.5 billion, noted Facts and Figures.

Taking a look at Facts and Figures

The Alzheimer’s Association’s 2023 Facts and Figures report (the first released in 2007) provides an in-depth look at the latest national and state-by-state statistics on Alzheimer’s disease prevalence, mortality, caregiving, dementia care workforce and costs of care. 

Alzheimer’s disease is not a normal part of aging; it’s a devastating cognitive disorder that will be the number 1 killer by 2050. This year’s Fact and Figures findings indicate that 1 in 3 seniors dies with Alzheimer’s or another dementia. This devastating disorder also kills more than breast cancer and prostate cancer, combined. Between 2000 and 2019, deaths from heart disease have decreased by 7.3% while deaths from Alzheimer’s disease have increased by 145%.  

Researchers found that while only 4 in 10 Americans talk to their physician right away when experiencing early memory or cognitive loss, 7 in 10 would want to know if they have Alzheimer’s disease if it could allow for earlier medical treatment. 

This year’s report also examines the capacity of the medical specialty workforce essential for diagnosis, treatment and ongoing care for people living with Alzheimer’s and all other types of dementia. The shortage of dementia care specialists could soon become a crisis for Alzheimer’s disease care, warn the researchers, especially with the recent FDA accelerated approval of new treatments targeting the underlying biology of Alzheimer’s disease, which is reframing the health care landscape for people with early-stage Alzheimer’s or MCI due to Alzheimer’s disease.

Caring for those living with Alzheimer’s or other dementias poses special challenges, the report noted. As dementia symptoms worsen, caregivers can experience increased emotional stress (59%), depression, anxiety, chronic stress, and new or exacerbated health problems. Additionally, caregivers often experience depleted income and finances due to disruptions in employment, and paying for health care or other services for both themselves and those with dementia.

While recent advancements in treatment of early-stage Alzheimer’s, including mild cognitive impairment (MCI) due to Alzheimer’s disease, are providing hope to millions living with memory loss and early cognitive decline, the latest Fact and Figures finds too often individuals with memory concerns, and their doctors, are not discussing the issue, missing a critical first step toward diagnosis and potential treatment.

“Providing the best possible care for Alzheimer’s disease requires conversations about memory at the earliest point of concern and a knowledgeable, accessible care team that includes physician specialists to diagnose, monitor disease progression, and treat when appropriate,” said Maria C. Carrillo, Ph.D., chief science officer of the Alzheimer’s Association, in a statement announcing the release of the 128-page report.

“For the first time in nearly two decades, there is a class of treatments emerging to treat early-stage Alzheimer’s disease. It’s more important than ever for individuals to act quickly if they have memory concerns or experience symptoms.”

An accompanying special report, The Patient Journey in an Era of New Treatments, offers new insights from patients and primary care physicians (PCPs) on current barriers that impede earlier discussion of cognitive concerns. Focus groups reveal many people with subjective cognitive decline (self-reported memory concerns) do not discuss cognitive symptoms with their health care providers. Previous special reports have indicated many people believe their experiences are related to normal aging, rather than a potential diagnosable medical condition.

Taking a close look at Rhode Island

The number of people aged 65 and over with Alzheimer’s and other dementia continues to increase in Rhode Island, from 24,000 in 2020, and expected to climb to 27,000 by 2025.  That’s an estimated 12.5% increase.  Fifty-two percent of Rhode Island caregivers report having one chronic condition, 41% say they are depressed and 11% rate their health as poor. 

Currently there are 36,000 unpaid caregivers in the Ocean State providing about 51 million total hours of uncompensated care (valued at over $1.29 million).  

The cost of health care continues to skyrocket to care for those with Alzheimer’s and other dementias.  The state’s Medicaid program spends over $470 million, with the projected cost to increase by 20.1% by 2025. 

Two years ago, there were 33 practicing Geriatricians in Rhode Island. By 2050, a 48.5% increase of this medical specialty will be needed to meet the patient care demands. Three years ago, there were 7,410 Health and Personal Care Aides providing care. By 2030, an increase of direct care workers by 27.5% will be needed to provide personal care. 

Implications for Rhode Island lawmakers, state officials

Donna McGowan Executive Director of the RI Chapter of the Alzheimer’s Association expects the release of the latest Alzheimer’s Disease Facts and Figures to educate state policy makers about the impact of Alzheimer’s on their own communities and districts, specifically the number of Rhode Islanders living with Alzheimer’s or related dementia, and the number of caregivers who provide for them. 

“Further, along with personal discussions, the report will help them to understand the reality that many of their constituents are hesitant to seek a medical diagnosis, or even support it. And the report will highlight for policy makers the crisis that is the shortage of workers in the Alzheimer’s and related dementia professional caregiving field,” notes McGowan.

As the 2023 Alzheimer’s Disease Facts and Figures indicates, a growing number of caregivers have approached the Rhode Island chapter to access programs and services, says McGowan. Last fiscal year, approximately 4,600 individuals contacted the Rhode Island chapter to access programs and services which equated to an “8% overall increase over the previous fiscal year,” she said.  

According to McGowan, this year they are tracking approximately a 16% increase in individuals contacting their helpline, totaling approximately 5,336 individuals accessing programs and services. 

“With the report showing we may not have sufficient specialist capacity to deal with the projected increase in Rhode Islanders with ADRD, there is a critical need to provide Rhode Island primary care practices with the training needed to care for persons with dementia and their caregivers,” says Maureen Maigret, Policy Advisor for Senior Agenda Coalition of RI (SACRI), who also serves on the state’s Advisory Council on Alzheimer’s Disease and Care and a member of The Care Transformation Collaborative (CTC).  Fortunately, the CTC, in partnership with the Rhode Island Department of Health, is offering such training now through the state’s Geriatric Education Center. 

“And with a projected need for close to a 30% increase in home health aides and personal care attendants, the workforce shortage will worsen dramatically if we fail to increase direct care staff wages and expand training staff to care for persons with ADRD,” warns Maigret, noting that this is why SACRI is advocating for funding to increase direct care staff wages to a minimum of $20 an hour. 

“As the prevalence of people living with dementia continues to increase in Rhode Island, the health system and long-term care continuum will be challenged by the findings highlighted in this report,” says Nancy Sutton, MS, RD, the Rhode Island Health Department’s (RIDOH) Chief, Center for Chronic Care and Disease Management. “RIDOH, the Rhode Island Alzheimer’s Disease and Related Disorders Advisory Council, and our many partners are committed to continuing efforts to educate the public on the importance of speaking to a healthcare provider about memory concerns, she said.

Sutton says, “with the support of federal funding, resources such as a Brain Health Toolkit are being developed to support health system partners in their engagement in conversation with patients and caregivers about the importance of early detection and navigating complex systems of care and community resources to support people living with dementia.”

“We know that age is a big risk factor for Alzheimer’s Disease and Related types of Dementia (ADRD),” said the RI Office of Healthy Aging (OHA) Director Maria Cimini. “As Rhode Islanders age if they or their caregivers are concerned about memory loss, we encourage them to talk to their physicians and get connected to resources through the Point, 401-462-4444 or through myoptionsri.gov to help navigate this journey.” 

At OHA, we have worked to build comfort and capacity among physicians through a recent Alzheimer’s Disease Programs Initiative (ADPI) grant with the focus of expanding the Dementia-Capable Home and Community Based Services which include outreach and education of primary care/direct service providers in identification, diagnosis, referral, and care planning process for ADRD and to provide services supportive of individuals living with dementia and their family caregivers within the statewide Aging and Disability Resource Center. OHA and its partners developed a provider resource tool to assist providers with referring patients with cognitive symptoms and family caregivers to services; and it also provides guidance to providers in conducting care planning, and billing for dementia-related services. That resource can be found here: https://oha.ri.gov/resources/oha-resource-center.

For a copy of the 2023 Alzheimer’s Disease Fact and Figures, go to: https://www.alz.org/alzheimers-dementia/facts-figures.

For a copy of the accompanying special report, The Patient Journey in an Era of New Treatments, to https://www.alz.org/media/Documents/alzheimers-facts-and-figures-special-report.pdf.

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. Caregivers will also find programs and services offered by this organization, too. For details, go to https://www.alz.org/ri.

RI Seniors, aging advocates call for an “age friendly” budget

Published in RINewsToday on March 27, 2023

Over two months ago, Gov. Dan McKee unveiled a sweeping $13.7 billion budget for the upcoming fiscal year.  After its release, the Senior Agenda Coalition of RI (SACRI), representing 21 organizations, called this budget “unfriendly to seniors,” charging that it “short-changed” seniors.  In an e-blast that was sent to 1,800 seniors and aging advocates SACRI urged them to contact their lawmakers asking that they put more funding into the delivery of aging programs and services.  

As the House Finance Committee continues to hold hearings on bills that might ultimately be rolled into the upcoming FY 2024 Budget, last week the SACRI brought 220 seniors, aging advocates and professionals in the aging network to the Warwick Crown Plaza to personally urge House Speaker Joe Shekarchi (D-Warwick) and Senate President Dominick Ruggerio (D-Providence, North Providence to hammer out an “age-friendly” budget.

SACRI Board Chair George Neubauer began this year’s Legislative Leaders Forum by quoting President Joe Biden’s call to Congressional lawmakers at the annual State of the Union Address to maintain Medicare and Medicaid. The President urged lawmakers to “stand up for seniors”.  Setting the stage for why this event was organized, Neubauer told the packed room: “Today, we are here to speak up for ourselves.”

Painting a Portrait of Rhode Island Seniors

“Effective advocacy includes good data and good stories,” said Maureen Maigret, a SACRI Board member and policy advisor for the group setting the stage for the speakers. She presented demographic data on the state’s graying population, discussed the increased needs of state’s aging programs and services to keep people at home, and detailed SACRI’s budget policy fixes.

“We speak up for 200,000 seniors and our numbers are growing,” says Maigret, also a former State  Representative and Director of the RI Department of Elderly Affairs. By 2030, 1 in 5 Rhode Islanders will be aged 65 and over,” she says.

While many think that seniors are a drain on the economy, they are not. According to Maigret, $3 billion dollars in Social Security benefits are pumped into the state’s economy. Twenty percent of seniors are still working and paying taxes and employers are very aware that seniors have extensive job experience skills and are usually very reliable employees.

“Additionally, seniors are part of an invisible workforce of unpaid caregivers who take care of family members and friends, also,” says Maigret, noting that AARP Rhode Island recently released a study reporting that there are 121,000 unpaid caregivers, with the value of their unpaid care estimated to be $2.1 billion dollars (just under $19 per hour).

“Seniors also contribute thousands of hours of volunteer work to their local communities, lending a helpful hand to senior centers, friendly visitor programs, Meals on Wheels, and to the Village Common of RI at four Village communities and multiple other agencies,” adds Maigret.  

“An overwhelming 70% of Rhode Island seniors want to age in place and remain in their communities,” says Maigret, noting that “after age 65, 3 out of 5 of these individuals will need some support to stay in their homes.”

SACRI survey on areas of concern for seniors

With Rhode Island’s top House and Senate leadership listening, Maigret touched on the findings of a SACRI survey that identified an array of concerns expressed by their older constituents.  Health and care issues came up on the top of this list, followed by isolation and loneliness, lack of knowledge of community support services, the need for transportation, loss of mobility, high housing costs, and lack of income.

The survey findings indicate that needed information is not reaching older adults to navigate the long term care system, says Maigret. Forty percent do not know about programs and services offered by Rhode Island’s Office of Healthy Aging (OHA) and The Point, the state’s aging and disability resource center.  She noted that the Governor’s FY 2024 budget didn’t allocate any state dollars to operate The Point, whose mission is to direct seniors to needed programs and services.

“Even with Social Security, a large number of seniors have low incomes,” says Maigret, with 50% of older households living on less than $50,000 a year, another 27% living on less than $25,000. “The cost of long-term care is staggering and unaffordable with semi-private rooms in nursing facilities going for $94,900 a year,” she pointed out. “Assisted living facilities is out of reach for many, too, costing about $54,000 a year. Bringing a home care aide 40 hours per week into a person’s home costs a whopping $56,160,” she adds.

Maigret urged Shekarchi and Ruggerio to reallocate more state dollars to home care services.  While other states, on average, spend 45% of Medicaid long-term care dollars on home care, Rhode Island only spends 22% with hundreds of seniors having to wait over 3 months to get home care services.

Maigret says that SACRI supports a legislative agenda that calls on the Rhode Island General Assembly to craft a “Better Budget for Better Care,” which will result in a permanent investment to improve the care provided to seniors.  SACRI also urges that lawmakers raise direct workers pay to $20 per hour to attract workers into home care agencies and nursing facilities. To assist seniors to access needed programs and services, $500,000 must be allocated into the House budget to better market available information and referral services offered by The Point.  

“Meanwhile, SACRI also is pushing to add five new positions at the OHA, with two being assigned to its Adult Protective Services Unit to increase increased caseloads,” says Maigret.  By allocating funding to help more lower income Medicare beneficiaries pay their Medicare Part B premiums, seniors will have more money to pay their bills.     

Telling Powerful Stories

SACRI pulled together a few “real life” stories to illustrate why Rhode Island lawmakers must craft an “Age Friendly” FY 2024 Budget.

Jeanne Gattegno, working in the elder abuse sector, shared her thoughts as to why OHA’s Adult Protective Service Unit (APSU) is underfunded.  “Elder abuse is a crime and anyone suspecting abuse must report it.  When its reported it must be investigated by the APSU,” she says.

According to Gattegno, in 2021, there were over 6,200 calls to OHA, over 1,400 calls were elder abuse complaints, and 2,800 were investigated as self-neglect. “There are five workers in the APSU. Just do the math. It’s an incredibly difficult job and it’s life and death and there are not enough people to help,” warns Gattegno.

Allyson Manning, an overworked Registered Nurse at a local nursing facility, highlighted her typical day working with two Certified Nursing Assistants to take care of 26 residents.  Due to low wages, the facility can’t fill the third CNA position to assist the other two CNAs on the shift. 

Serving as Team Leader, Manning says that there is not enough time to take care of her 26 residents.  During this shift her chief responsibility is to pass medications, perform treatments and assessments.  She often finds that her primary functions as an RN are late or difficult to carry out, due to the need to assist the CNAs with their tasks of toileting, washing, dressing and feeding residents.

“We are not attracting the people we need to these [CNA] positions.  They are low paid jobs, but it is really rewarding work but it is hard work., she says.  When hired, CNA’s are not staying long, turnover is high says Manning. While initially working full-time, she now only works two days a week.  

Giving Their Thoughts…

RI Speaker of the House, Joe Shekarchi remarked that he clearly understood the very powerful stories shared by Gattegno, Manning and others. “I didn’t need to hear those stories because I live those stories every day.  When his 97-year-old father recently fell at home and broke his pelvis, he was admitted to the Bethany House.

“I see how hard they work and the limited staff they have,” says the House Speaker, understanding the labor shortage’s impact on nursing facilities. “I see when my father hits the call button and it takes a long time [to answer] not because they are slow, but because they are doing three or four things at the same time,” he says.

“It’s important that seniors have options so they can choose what’s best for them,” says Shekarchi. “We need to provide supports for seniors to age in place and remain in their homes living independently,” he added, acknowledging that it is not always easy to do.

Shekarchi also recognized his effort with the Senate President made historic investments to require minimum staffing last year. Unfortunately, it hasn’t happened because the nursing facilities are now facing labor shortages, he says. 

According to Shekarchi, last year the General Assembly also provided more funding to make home care more accessible for seniors.  Lawmakers also provided tax relief on pensions for older taxpayers and military veterans, strengthened laws to protect seniors from financial exploitation, and made it easier to apply for SNAP benefits and expanded property tax relief for seniors. He expects to continue his efforts this legislative session.

Shekarchi also reported that he has introduced a bill, supported by AARP RI, to allow zoning for constructing Accessory Dwelling Units (ADUs) in garages or basements. He called on seniors and aging organizations to support his housing bill.

The House Speaker also discussed proposed legislation by Rep. Lauren Carson (D-District 75, Newport) proposed legislation that would create a House Study Commission to coordinate Rhode Island’s programs and services for seniors, expressing the need for such a study commission.  

Like Shekarchi, Senate President Dominick Ruggerio outlined a number of legislative successes last year.  He recognized passage of Sen. Josh Miller’s legislation authoring the creation and implementation of a pharmaceutical redistribution program. Former Sen. Cindy Coyne’s legislation became law, too, lowering the age at which a victim can be considered an elder under the state’s financial exploitation law from 65 to 60.

With the state’s growing number of seniors, Senate President Ruggerio stated that senior issues are more important than ever.

“We need to do everything we can to ensure seniors and retirees can enjoy their older years with dignity and security,” he said. “Because after a lifetime of hard work and contributing to our communities… older Rhode Islanders deserve nothing less.”

“The Senior Agenda Coalition is a powerful tool in its work.  At the Statehouse we rely on your voices to help guide us as leaders,” says Ruggerio, noting “we don’t have all the answers and appreciate your input.”

To watch SACRI’s 2023 Legislative Leaders Forum, go to  https://ritv.devosvideo.com/show?video=7cd34a907d29&apg=c7e3a6c7.