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

Keynote: Fine Calls for Community Health Stations Across Rhode Island

Published in the Woonsocket Call on May 20, 2018

Last week, the Rhode Island Minority Elder Task Force (RIMETF) held a Health and Wellness Fair at the Cape Verdean Progressive Center in East Providence to put a spot light on minority health care needs.

Dr. Michael Fine, a primary care physician who formerly was the state’s Health Director, and now serves as Senior Population Health and Clinical Officer at the Blackstone Valley Community Health Care, Inc., gave the keynote address, calling for an overhaul of America’s ailing health care delivery system.

Although RIMETF’s primary mission is to raise money and seek grants to provide limited emergency assistance to low-income seniors in crisis situations, the organization also promotes the advancement of inclusive programs for minority elders, says Susan Sweet, the nonprofit’s founder, a former state official who advocated for, developed and operated programs and services provided to the state’s vulnerable populations, including elders. She continued that work after retirement from the state. “During the last two decades, RIMETF provided more than $53,000 in grants,” she said.

According to Sweet, RIMETF’s $200 grants help low income seniors to pay utility costs, rent, food, medications, clothing, furniture, personal healthcare items and other necessities of life. She says that 80 grants are given out annually, about half going to minority applicants.

But, the decision to host a Health and Wellness Fair on May 11, 2018, was tied to minorities having a lack of access to health care services and to have Dr. Fine outline a better way of providing care to Rhode Island’s minorities, adds Sweet. “To this day the state’s diverse minorities continue to remain in the dark about health care programs and services that they can access and that lack of information has a detrimental impact on their health and well-being,” says Sweet.

Health Disparities in Rhode Island

During his thirty-minute keynote, Dr. Fine, a primary care physician who formerly was the state’s Health Director, and now serves as Senior Population Health
and Clinical Officer at the Blackstone Valley Community Health Care, Inc., provided the details as to how lack of access to health care adversely impacts the health and life expectancy of Rhode Island’s minorities.

According to Dr. Fine, infant mortality in the African American population is about three times as high than in the white population. Diabetes is about two times more common in the African-American population than it is in the white population. He also noted that life expectancy in the United States is 4.5 years less among the African American population than it is among the white population.

Zeroing in on Cape Verdeans, Dr. Fine noted that the Rhode Island Department of Health does not track the health of this minority group separately from other groups. The state’s primary care practices and community health centers don’t have a good way to decide who counts as a Cape Verdean for health tracking purposes, he said. But about half of the Cape Verdean community in Rhode Island live in Pawtucket and Central Falls, so that health information collected using the electronic medical record by Blackstone Valley Community Health Center (BVCHC), Inc, provides the first ever look at the health status of Cape Verdeans in Rhode Island.

It’s difficult to know if that data is complete, because it doesn’t allow us to count all Cape Verdeans at the BVCHC, but only those people who speak Cape Verdean Creole or those who identify themselves as having been born in Cape Verde. “Because we have no complete way to identify the health status of the Cape Verdean population, we have no certain way to identify specials needs and opportunities to provide better health care to this minority group,” says Dr. Fine. In addition, because Cape Verdean Creole is not a written language, “we have no way to certify Cape Verdean medical translators” which means some of the health care needs of Cape Verdeans go unaddressed, he adds.

But, there are better ways to improve the health care of Rhode Island’s Cape Verdeans, says Dr. Fine. “We must make sure that all Cape Verdeans are enrolled in a primary care practice or community health center,” he says, noting that electronic medical systems can provide better measures of the health of this population.

Dr. Fine called for Cape Verdeans to be appointed to boards of health care organizations to represent them in decision of allocation of resources, to demand better translation services, and to improve delivery of health care to Rhode Island’s Cape Verdeans.

As to Rhode Islanders, Dr. Fine noted that 25 to 45 percent don’t get primary care and prevention. As a result, there are 1,200 unnecessary deaths a year from heart disease and stroke. There are 200 unnecessary deaths a year from colon cancer and 65-70 unnecessary cases of HIV. Up to 200,000 Rhode Islanders remain smokers, he says.

Dr. Fine continued to detail the negative impact on the health of Rhode Islanders if they did not visit a primary care physician. More than 1,500 babies are born to teenagers, more than a third to minorities. Not to mention that there are 330 to 400 avoidable deaths from influenza every year due lack of immunization (500,000 Rhode Islanders are currently not immunized every year). And there are 330 deaths a year from prescriptions and other drug overdoses, he says.

It’s Time for a Change

Dr. Fine warns that major changes must be made to the nation’s health care delivery system to reduce spiraling health care costs and to provide better access. This solution can be modeled after his Central Falls Neighborhood Health Station (CFNHS), he says. It’s a multi and interdisciplinary approach, bringing a wide variety of health care professionals together, from physician, nurses, physician assistants, mental health workers, nutritionists, substance abuse workers and midwifes, to rehabilitation professionals, CFNHS’s must also provide urgent care and primary care services, be open on weekends and have “sick today access appointments.” Says Dr. Fine.

Fine has documented early successes in the CFNHS’s delivery of health care. Adolescent pregnancy was been reduced by 24 percent in 2016 and emergency medical service runs were reduced by 5 percent in just 12 months.

Dr. Fine envisions a Neighborhood Health Station in every community of 10,000 persons. When up and running, “we’ll increase life expectancy, reduce infant mortality and revitalize the local economy,” he says, by reducing health care costs.

Concluding the Health and Wellness Fair, Director Charles J. Fogarty, of the Rhode Island Division of Elderly Affairs, who will be retiring next month, was recognized by RIMETF for his 40 years of public service and his support for the work of the Minority Elder Task Force.

For more details regarding the work of the RI Minority Elder Task Force or to make a donation, write RIMETF, 5 Leahy Street, Rumford, RI 02916 or call Lori Brennan Almeida, Chairperson, at 401-497-1287.