Tag Archives for Susan Sweet

Hoarding and seniors: “The Consequences of Clutter” Report 

Published in RINewsToday on July 22, 2024

With the number of seniors afflicted with a hoarding disorder expected to skyrocket to over 14 million, on July 2 U.S. Sen, Bob Casey (D-PA), Chairman of the U.S. Senate Special Committee on Aging, unveiled a report putting the spotlight on its impact on older hoarders and their communities.  For seniors those consequences include health and safety risks, social isolation, eviction, and homelessness. For communities, those consequences include public health concerns, increased risk of fire, and dangers to emergency responders.

According to the report, citing the Administration for Community Living’s 2020 Profile of Older Americans, the number of seniors in the U.S. is expected to increase from about 54 million in 2019 to over 94 million in 2060. “Because hoarding disorder disproportionately impacts older adults, experts worry that aging could fuel a rise in hoarding in the coming decades,” notes the report, quoting NPR Morning Edition’s Rose Conlon. 

According to the Majority Staff of the Senate Aging Committee who wrote the report (with a whopping 270 citations), it was developed for information purposes only and does not represent the findings or recommendations formally adopted by the Committee.

Hoarding is a chronic and progressive condition

The report notes that this chronic and progressive condition impacts roughly two percent of the general population, while it affects about six percent of those over the age of 70.

“Hoarding disorder is a heartbreaking condition that is posing challenges to older adults, their families, and their communities across the country,” said Chairman Casey (D-PA) in a July 2 statement announcing his report. “The federal government has an obligation to ensure that Americans can age with dignity and this report makes clear that obligation must include doing more to address hoarding disorder,” he says.

According to Casey, the new report, “The Consequences of Clutter: How Hoarding Disorder Affects America’s Older Adults, First Responders, and Their Communities,” demonstrates the scope and severity of the challenges of this complex mental health condition and offers a path forward for how we can help people, communities, and local governments contend with this condition. 

Local communities throughout the United States are already working to address cases of hoarding disorder, including through the formation of hoarding task forces to coordinate response efforts, says

Casey’s report, noting that the local resources  available often do not correspond with the level of challenge communities are facing. 

Casey’s report issued a series of nine recommendations for how the federal government can increase support to communities that are contending with hoarding disorder, including expanding access to treatment for the condition, providing local officials with more extensive guidance and training to support afflicted individuals, and expanding the scope of tracking and research about how hoarding disorder is affecting individuals and communities nationwide.

The report compiles 55 requests for information, responses, and stakeholder statements submitted by non-profits, social services organizations as well as state and local governments to gather information to better understand the impact of hoarding in local communities. 

“Overall, the report does a good job of outlining the importance of the topic and identifies the federal and state agencies that should be involved in assessment and intervention,” says Randy O. Frost, professor emeritus of psychology at Smith College and a leading researcher on hoarding and related topics.

“Hoarding Disorder is a relatively [recognized] new disorder, having just entered the DSM in 2013. Consequently, there are not identified agencies who can claim ownership of the problem and the potential solutions.” This report legitimizes this problem for attention from these agencies, says Frost, noting that this report also highlights the fact that the prevalence of hoarding is extremely high among the elderly.

“Severe cases are sometimes life threatening for the individual and those living nearby or those called in to provide help,” adds Frost.

An Expert’s take…

According to Frost, the report covers the important issues related to hoarding, including education of the general public as well as family, friends, and people suffering with the problem. It highlights the need to train professionals in best practices for intervention. An important assumption underlying the report is that this is a problem which touches many different social service disciplines, from first responders to assisted living facilities, adult protective services, animal control, mental health, public health, child health, elder services, etc. “When a local case is identified, in current practice, it is not unusual for 4 or 5 of these agencies to be involved, often not knowing what each other are doing. Integration among these agency professionals is crucial for dealing with hoarding efficiently,” he says.

“There is a lot more that could be said about this problem, and a lot more detail could have been included regarding specific recommendations,” he said, stressing that this was not the purpose of the report. “The report was to outline the problem and point different agencies in appropriate directions moving forward. It does so and is a welcome effort from a federal agency,” he says.

Spotlight on Rhode Island

“Hoarding is a serious problem that has apparently not been adequately addressed in Rhode Island as well as in the nation as a whole,” charges long-time advocate for vulnerable and marginalized populations Susan Sweet, former associate director of the Department of Elderly Affairs, and founder of the Rhode Island Minority Elder Task Force (RIMETF).  “While it is present in all age groups, adults over 60 years have the highest level of hoarding behavior and the most risk because of diminished physical and often cognitive abilities,” she says.

“This report outlines the difficult life circumstances that elders with the problem of hoarding face.  The Rhode Island network of aging programs and advocates for older adults do not have the resources to create and implement effective remedies,” warns Sweet. “I hope that shining a light on the issue will encourage policy, funding, and attention to what is a mental health issue and a complication in physical illnesses that create obstacles in attempts to help elders afflicted with the disorder,” she says.

According to Sweet, the Ocean State is one of the few areas and the only state that has organized a Hoarding Taskforce to point the way towards effective client management, education and training of eldercare healthcare, mental health programs and social work entities.  The health and well-being of individuals and communities is greatly impacted by the fire hazards, evictions, safety issues, and other self-neglect problems that occur with hoarding behavior.

“Awareness of the prevalence of hoarding and the danger to our communities and citizens should quicken the pace of funding and support to combat this growing threat,” says Sweet.

Like Sweet, Robin Covington, a member of Rhode Island’s Hoarding Task Force, sees the value of the released Senate Aging Committee’s report on hoarding and its recommendations. “As an adult protective services caseworker I saw firsthand the implications of hoarding,” said Covington, who serves as Coalition Director of Saint Elizabeth Haven for Elder Justice. “Hoarding creates health, fire hazard and safety risks, social isolation, eviction and homelessness,” she said. 

“Often times, people who hoard don’t think they have a problem because of their attachment to their possessions, which makes it difficult to deal with”, says Covington.  Because of its behavioral aspects a person with this behavior needs clinical assistance, she notes, not just decluttering of personal items. 

Covington believes that there is a lack of programs and clinical support in place in Rhode Island to address the increasing problem of hoarding. However, the state’s Hoarding Taskforce is working on helping support case managers and providers by developing a workforce initiative to support individuals with clutter or hoarding tendencies. 

Increase funding for Case Manager interventions

But more funding must be given to Community Action Programs who subcontract with OHA to oversee Adult Protective Services. “It’s pricey to cover the costs of visits, intervention and coordination of a clean-up company,” Covington says. 

A lot of times when it is someone over 60, a report to Adult Protective Services is provided and a CAP agency case manager goes out and visits the older adult to put eyes on them and to help with an intervention like the coordination of a clean-up company, but that can be expensive, notes Covington. 

As a Licensed Clinical Social Worker for over 23 years and RIMETF’s president  Lori Brennan-Almeida has seen the negative impact of hoarding up close.  For over 20 years, she has seen RIMETF provide emergency assistance to seniors age 55 and over to pay for services to clean their apartments to avoid eviction.

“Clinical intervention is necessary to stop seniors from hoarding”, says Almeida, stressing the importance of home-based therapy. “Grief counseling may be needed because a person often forms an attachment to compensate for a personal loss,” adds Brennan-Almeida.  

“Without counseling, hoarding may well continue after the debris is gone from their apartment and the senior will just collect more items”, says Brennan-Almeida.  

Keeping tabs on hoarding

“This is our first ever hoarding report,” says Misha Linnehan, Deputy Press Secretary for Sen. Casey.  When asked if there would be a follow-up report next year, she stated: “There are currently no plans for another but it is always a possibility.” 

Kudos to Chairman Casey and the Majority Staff for putting resources, time and effort into crafting this report.  For those people in the trenches, future reports should be written and formal Senate Aging Committee hearings held to keep tabs on this growing problem and to determine if the recommendations from this first report are being implemented. 

Don’t drop the ball on this one.

RI Hoarding Task Force

Janet Spinelli and Kelly McHugh are co-chairs of the RI Hoarding Task Force which is convened through the RI Elder Mental Health and Addiction Coalition co-chaired by Chris Gadbois and Janet Spinelli. 

The RI Hoarding Task Force has two committees including the HD Task Force Toolkit Development Committee lead by Christopher Liu, an undergraduate at Brown University and the HD Task Force Website and Outreach Committee.  

Anyone interested in joining the Task Force can email RIEMHAC@gmail.com  More information and resources can be found at RIHoardingtf.ri.gov which is supported through the EOHHS Money Follows the Person Program.

For download a copy of the Senate Aging Committee’s hoarding report, go to chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.aging.senate.gov/imo/media/doc/the_consequences_of_clutter.pdf

Strengthening the Safety Net for Seniors Living in Poverty

Published in RINewsToday on July 15, 2023

A recently released U.S. Census Bureau report should send a message to Congress and spur the efforts of aging advocates to protect older Americans from financial hardship and poverty.  Some consider the “golden years” to be age 60, or 65, and over.  But it’s not so golden for millions of retirees.

According to a recently released U.S. Census Bureau’s report, “Profile of Older Adults by Poverty Status: 2021,” 8.3% of the nation’s population age 65 and over are living in poverty.    

The Census Report, released on June 25, 2024, uses data from the Survey of Income and Program Participation (SIPP), to draw a profile of the 4.7 million older adults who lived in poverty in 2021. This longitudinal survey provides comprehensive information on the dynamics of income, employment, household composition and government program participation.

Poverty in your later years

Here are a few data nuggets from the latest Census Report’s findings…

According to the report, two-thirds of older adults living in poverty in 2021 were women. Limited time in the workforce, raising children or serving as a caregiver, have decreased Social Security benefits, leading to income insecurity in their later years. Older adults living below the poverty line were more likely than those “non-poor” to have never married, says the report, noting that this limits the chance of these individuals to accumulate financial resources with a spouse or to obtain financial incentives (such as tax benefits) associated with being married.

And yes, living alone can be hazardous to your pocketbook, notes the Census report. In 2021, most older adults in poverty (62.9%) lived alone, compared to only 26.3% of those not in poverty.

In addition, among older adults in poverty who lived with at least one other person, 65.5% lived with a spouse, 29.9% lived with a child and 11.2 percent lived with a grandchild, noted the report’s findings.

A snapshot of poverty in Rhode Island

According to Maureen Maigret, Policy Advisor for the Senior Agenda Coalition of Rhode Island,” the Census Bureau released a “significant and must-read report.”  

“The data shows that almost five million older adults across the nation are living in poverty, and details how gender and social characteristics contribute to poverty status and wealth,” says Maigret. “Two-thirds of the nation’s older adults living in poverty are women, which is like the poverty profile of older adults in Rhode Island, as are the higher rates of poverty for older persons of color.

Maigret noted that a comprehensive 2014 report on RI Older Women she researched for The Women’s Fund of RI documented the high poverty rate of older women in the state – 9.7% for men and 11.3% for women. The Women’s Fund report also found about 20% of older RI adults living in poverty were more likely to be Hispanic or non-Hispanic Black. 

“Unfortunately, things have not improved,” she says, noting that the poverty rate for older Rhode Islanders has increased to 12.3% (US Census ACS 2022 estimates) which is higher than the 10.9% national poverty rate for older adults.

“Providing data on the poverty status of older adults is important for our state policymakers. It is also critical for them to understand the notable gender differences as women outnumber men in the state’s older population (56% vs 44%), have greater healthcare expenses, are more likely to live alone and need long term supports,” states the former Director of the state’s Department of Elderly Affairs (DEA), now referred to as the Office of Healthy Aging.  Older RI women also have lower Social Security benefits than men (about $5,000 less) and 37% less pension benefits, she says.

Maigret notes that most older Rhode Islanders are not wealthy with  many falling into what is termed the “forgotten middle.” A specifically, term used to describe those individuals with income not low-income enough to be on Medicaid but not enough to meet basic needs–estimated at $30,000/year for a single renter in good health (Elder Index). 

Twenty-seven percent of our older households have income below $25,000 (US Census) which is not sufficient to meet basic needs. This is why we must both improve some of the programs that can help them financially and better inform them of available benefits, she says. 

Tackling poverty in the Ocean State

According to Susan Sweet, founder of the Rhode Island Minority Elder Task Force (RIMETF) (riminorityeldertaskforce@gmail.com), a 501 © (3) nonprofit, established in 1992 after a survey found that elders from minority groups were not being serviced by aging network providers, “The survey revealed that Senior Centers, Adult Day Centers, and other state and local programs had almost no staff who were able to communicate with clients who had limited or no English language skills, and paid no attention to cultural differences in different populations,” she noted.

“While there has definitely been some improvement, most older Rhode Islanders of different cultures and/or languages must seek assistance from the few programs that are specifically directed to them,” says Sweet, a former state associate director of DEA, and advocate for seniors facing hardships and low-income difficulties.

“But they are not the majority of those who barely survive because of a lack of funds and support. Coming from all backgrounds, many poor elders are struggling to meet basic needs such as shelter, food, medicine, medical care, utilities and other necessities”, says Sweet.

“Older adult needs appear to be much worse than they were in the early 2000s. Inflation, Covid, lack of adequate housing options, as well as difficulty in accessing existing assistance programs are pushing these individuals to an existence that threatens their health and their life,” warns Sweet.

State programs that exist for the purpose of helping poor, older adults often have long application periods and stringent rules that create very little ability to respond to emergency situations,” according to Sweet.

Sweet says that RIMETF’s most extensive work is in direct assistance to poor elders for basic needs. “We provide mini-grants , generally in the range of $200 – $400, to low-income elders in dire circumstances by paying directly to providers of goods and services such as rental entities, utilities, fuel companies and gift cards for items such as food, clothing, medicine, and household goods. “Our members also assist to get people on payment plans, programs, services, and better situations that may prevent future emergencies and enable longer-term solutions,” she says.

RIMETF has no paid staff and its Board membership consists of a diverse group of health and social work representatives, program administrators, community members, Senior Center and Community Action staff members, housing specialists, and advocates from other aging programs. The older adults who need help are identified by the group’s membership and demographic information and records are kept by the organization.

The nonprofit group is funded by private foundations such as Nursing Placement Foundation, Rhode Island Foundation, Tufts, Harriet Boucher Foundation, Dexter Fund as well as municipalities including the Cities of Providence, East Providence and Pawtucket.

Both Maigret and Sweet call for more to be done by the Rhode Island lawmakers next session to strengthen the safety net for struggling older Rhode Islander’s to protect them from poverty.

“Yes, absolutely more work needs to be done,” says Maigret. ”Data from the national profile and corresponding state data provide strong evidence of the need to continue advocacy to fight for policies to ensure Rhode Islanders enjoy economic security in their older years.” 

“Policies are a necessary part of the work, but oversight and quality control of state and private programs and services is vital to ensure that actual help is available in a timely manner; currently, oversight is lacking,” says Sweet, calling for state programs and policies to be better monitored and evaluated by those who deal with poor older adults and know the hardships suffered by them.  

“The reality of increasing poverty among elders requires a grass roots understanding of the lack of support actually available to meet their needs,” says Sweet.

To get a copy of the Census Bureau’s report,  “Profile of Older Adults by Poverty Status: 2021,” go to https://www2.census.gov/library/publications/2024/demo/p70-193.pdf

To read “Older Women in Rhode Island: A Portrait, Woman’s Fund Rhode Island 2014,” go to https://wfri.org/assets/older-woman-rhode-island.pdf

The RI Budget proposal, as seen by our fastest growing demographic, Seniors

Published in RINewsToday on January 22, 2024

This Tuesday, Jan. 16th, Governor Dan McKee officially kicked off the legislative debate on the state’s $13.68 billion FY 2025 Budget in his 48 minute (4,481 word) State of the State address that laid out his spending priorities.  

Over the next six months the General Assembly will hold hearings on the proposed budget blueprint, rewriting it considering state revenues identified during the May Revenue and Caseload Estimating Conferences, and priorities of the legislature.

With passage by the House and Senate and signed into law by McKee, the final FY 2025 Budget will take effect July 1. 

Governor McKee’s budget proposal, which came 2 days after the State of the State, makes funding investments in education, small business, and Rhode Island’s health care system without raising any broad-based taxes. FY 2025 Budget specifics can be found in an article published by RINewsToday on Friday, Jan. 19th – HERE.

With the official release of McKee’s 2025 budget proposal on Thursday afternoon, Jan. 18, his statement along with comments from the top House and Senate legislative leaders were quickly issued.

“The Team Rhode Island budget that I’m sending to the General Assembly today prioritizes programs and initiatives that will help raise the incomes of our fellow Rhode Islanders,” said McKee. 

“By using available resources in targeted and strategic manner, we will continue to make progress on our RI 2030 goals while putting Rhode Islanders to work in good-paying jobs on projects that will pay dividends for decades to come,” he adds.

Legislative leadership

“Over the next several months, Chairman Lou DiPalma and the Senate Finance Committee will conduct a rigorous review of all aspects of the proposed budget through their public hearing process. At this early stage, I am pleased that the budget proposal reflects some of the Senate’s top priorities, including moving our state towards universal public pre-kindergarten, increasing funding for multi-language learners, increasing access to no-cost meals for students, fully funding recommended reimbursement levels for Early Intervention and increasing Medicaid rates,” says President of the Senate Dominick J. Ruggerio.  

“Now that Governor McKee has submitted the budget, our robust review process will begin. Chairman Marvin Abney and the House Finance Committee will soon commence the public hearing process and we look forward to working collaboratively with the Senate and Governor McKee over the next several months. With the federal pandemic funds having been allocated, we must live within our means and carefully scrutinize all spending requests,” says House Speaker K. Joseph Shekarchi.  “The Senate will continue working with all partners and stakeholders to adopt a budget that meets the needs of all Rhode Islanders.” adds the Senate President.

 Aging Groups and Advocates share thoughts

“It was good to see attention to older adults’ financial security by the proposal to increase the amount of pension income that can be exempted from state income taxes which would bring an estimated $500 benefit to about 10,000 persons,” says Maureen Maigret, The Senior Agenda Coalition’s policy advisor and former Director of the RI Department of Elderly Affairs.

“The Governor is looking for ways to increase Rhode Islanders’ incomes and the Senior Agenda Coalition has been working with several partners on a legislative proposal that would save $2,000 a year for many thousands of lower-income older persons and persons on disabilities on Medicare by having the federal government pay the cost of their Part B premiums,” she says, noting that this policy would not only save seniors money they can use for basic living expenses, but would bring millions of dollars into the state economy. It would also make them eligible for a federal program that helps pay for prescription drugs.

“We hope the $10 million in proposed bridge funding for nursing homes will help them to continue to provide necessary services for their vulnerable populations and avoid more closures which are so traumatic for residents,” says Maigret. 

“Although welcome, we had been hoping for more than the modest increase of $200,000 for senior centers as it gets distributed across around 40 senior centers. We know our older population is growing and our senior centers help hundreds of older adults stay healthy and connected to their communities,” adds Maigret.

“With many older adults waiting three months or more to get home care services and the home care worker shortage continuing it is disappointing to see the reimbursement increases recommended by the Social and Human Service Rate Review Study spread out over three years especially when the Executive Office of Health and Human Services had recommended funding the recommended increases over two years. And home care is not only what persons say they prefer but it costs far less to state government than institutional care,” notes Maigret.

“AARP Rhode Island applauds the Governor’s goal of increasing financial security for all Rhode Islanders,” said AARP Rhode Island State Director Catherine Taylor in a statement released days before the release of McKee’s budget blueprint. “Everyone should be able to choose how they live as they age,” she says.

AARP Rhode Island calls on the General Assembly to pass three pieces of legislation that would help to ensure financial security for all. AARP Rhode Island is pushing lawmakers to give all Rhode Islanders access to a retirement savings vehicle. We are pleased that Governor McKee called for the passage of the Secure Choice program, which would provide an optional, voluntary Roth-IRA plan to the 172,000 Rhode Island employees who do not have access to a plan through their employer,” says Taylor.

“The state must stop taxing Social Security benefits,” says Taylor. “We are one of 9 states that still tax these benefits. We encourage legislators to keep more money in the pockets of older Rhode Islanders by eliminating the state tax on Social Security,” she says.

“Lastly, we must reframe how we think about housing as we grow older, and Accessible Dwelling Units (ADUs) are part of the equation,” adds Taylor, urging the General Assembly to pass legislation providing housing options that are suitable for differing incomes, ages, and life stages. “ADUs are one way to accomplish this goal,” she notes.

This budget is an important step forward in helping our industry, says James Nyberg, president, and CEO of LeadingAge Rhode Island, a nonprofit representing providers across the long-term care spectrum from nursing facilities to home and community-based providers. “We appreciate Governor McKee and his staff recognizing our concerns and providing an infusion of funds across multiple settings to support older Rhode Islanders wherever they call home, their families, and our dedicated workforce,” he adds.  This includes the $10 million in stopgap funds to help nursing homes in critical financial distress as they await their permanent rate adjustment effective October 1. 

According to Nyberg, the October adjustment also included in the budget is expected to provide over $60 million in funding to help nursing homes address workforce challenges, the dramatically increased costs of operating their business, and remain financially viable. “We cannot lose any more nursing homes and hopefully this budget will help mitigate that well-documented threat,” he says.  

Similarly, the budget includes the phase-in of rate increases for assisted living residences and adult day providers, per the OHIC recommendations, to support these providers, consumers, workers, and families,” says Nyberg. “We also hope the proposed housing bond will help address the shortage of safe and affordable housing for seniors, the lack of which was highlighted in the Long Term Care Coordinating Council’s recent report entitled “Meeting the Housing Needs of Rhode Island’s Older Adults and Individuals with Chronic Disabilities and Illnesses,”  he adds.

“While there are financial and other challenges that persist, we look forward to working with the Administration and the General Assembly to advance these and any other initiatives to support our long-term care providers, those for whom they care, and their workforce,” says the nonprofit executive director. 

Governor’s budget doesn’t adequately address Seniors’ needs

While aging groups recognize Gov. McKee’s funding provisions that will benefit older Rhode Islanders, one aging advocate calls on the House Finance Committee to beef up funding for seniors in its budget.

“Once again, the senior population of Rhode Island is the fastest growing demographic in the state, and the most neglected,” charges Susan Sweet, former state associate director of the Department of Elderly Affairs and an advocate for seniors facing hardships and low-income difficulties. “The Governor McKee Budget provides no relief for seniors in the proposed 2025 spending plan other than a small gift to nursing homes that may help that senior care industry and a small increase of $200,000 statewide for dividing up among R.I. Senior Centers,” she says.

According to Sweet, seniors receive nothing in the budget other than a proposed tax reduction of “pension and annuity income” to begin in calendar year 2025.  In other words, nothing for this year.  She notes that the current exemption would be raised from $20,000 to $50,000 while the state remains currently only 9 of 50 states that tax Social Security and a minority of states that tax retirement pensions.

“There is also not one cent for retirees who had their pensions frozen in 2011 and have been stripped of their contracted pension benefits of a Cost of Living Adjustment (COLA) each year which they were required to sign and to contribute to from their pay each year of employment,” she says.

“Just down the road in our neighboring state of Massachusetts, there is no state income tax for Social Security or pensions. Their proposed budget includes a new $2,400 per senior payout for housing assistance, rental, or ownership costs,” says Sweet. During the State of the Commonwealth speech just one day after RI Governor McKee touted his Team RI game plan, a representative of the (Massachusetts) Senior Action advocacy group was invited and recognized as a leading voice in enabling seniors to stay in their homes with cash assistance from the state, she noted.

As the founder of the R.I. Minority Elder Task Force which provides financial assistance to poor RI elders in dire circumstances, Sweet regularly sees the neglect of seniors without adequate resources for the basic needs of life. “This is not a senior-friendly state, and this is not a senior friendly budget,” she states. 

Expect aging groups and advocates to gear up to push for their senior legislative priorities in the upcoming months. The budget debate now begins.

To listen to Gov. McKee’s State of the State Address on the FY 2025 Budget, go HERE. 

Details of Gov. McKee’s FY 2025 Budget. Go HERE.

To read Gov. McKee’s FY 2025 budget proposal (H 7225), go HERE.