Tag Archives for OHA

The Village helps grandparent/kinship caregivers in need

Published in RINewsToday on September 18, 2023

When we dream about our retirement years, these dreams most likely don’t include images of diapers, children’s tantrums, and school buses. However, for some grandparents and other kinship caregivers, their later years include these images, as they become primary caregivers for their grandchildren/kin children.

Nationally, more than 2.5 million children are being raised in kinship families which includes grandparents, other extended family members, or anyone with an existing relationship with the child or family. When these children cannot be with their parents, the next best thing is being placed with kin.

There are many benefits to staying with kin rather than being placed into the state’s foster care system. These can include experiencing less trauma; increased stability, higher rates of permanency; better behavioral and mental health outcomes; more feelings of belonging and being accepted, increased likelihood of living with or staying connected to their siblings, and a greater sense of cultural identity and connections to family.  

Additionally, kinship caregivers save the U.S economy approximately $ 6 billion dollars per year by keeping children out of formal foster care. Across the nation, there is a growing recognition of the importance and value of kinship caregivers. However, all of this comes at a physical, mental and financial cost to the kinship

The challenges of being a kinship caregiver

A new research study, Caregiver Profile: A Closer Look at Grandparents Caring for Grandchildren, by the National Rehabilitation Research and Training Center on Family Support (NCFS) at the University of Pittsburg, grandparent caregivers are experiencing a litany of adverse effects causing them to become a particularly vulnerable group. Grandparents are facing a higher rate of disability, lower employment, and a greater likelihood of poverty, says the study’s findings. One quarter of grandparents raising grandchildren live below the poverty line.

“Many challenges exist for grandparent and kin caregivers of children when it comes to navigating the legal and custody landscape while supporting their own needs, from physical and mental health to financial and employment security. We think this data [detailed in the 16 page report released in Sept. 2023] showcases the need to move forward on the recommendations developed by the Advisory Council to Support Grandparents Raising Grandchildren (SGRG) and the Recognize, Assist, Include, Support, and Engage (RAISE) Act Family, Caregiving Advisory Council that can help to support grandparent and kin caregivers,” said Meredith Hughes, JD, MPH, Senior Policy Analyst at University of Pittsburgh Health Policy Institute and Assistant Professor in the School of Public Health.”

 It is important to provide supportive services for grandparents raising grandchildren as many of these caregivers lack the necessary resources to fully support the children in their care. Support in areas such as kinship navigator programs that provide a single-entry point for learning about housing, health services, and financial and legal assistance, along with improved household resources and access to mental health services are needed. Rhode Island has a kinship navigator program for families involved with the department, but currently one does not exist for those who are not involved.  For every family involved with the Rhode Island Department of Children, Youth & Families, (DCYF), there are 5 who are not.

Grandparenting in the Ocean State

cording to the U.S. Census bureau, over 13,968 children are living with and being raised by their grandparents in Rhode Island, who make up the largest percentage of relative caregivers. Some kin families are involved with the child welfare system when children have to be removed from their home on an emergency basis. Rhode Island is one of the leading states in the nation in finding and placing children with kin. The state’s long-held philosophy is that children do better by living with kin. Of all the children in the state’s foster care system, around 70% are placed with kin.

For families involved with the DCYF, (known as “formal” kin caregivers) while it can be a distressing experience, they do gain access to needed resources and services, as well as receive monthly stipends and other supports to care for the children. For families who have private arrangements and are not involved with DCYF (“informal” caregivers), finding those resources and services can be challenging. Many if not most of kinship families are not involved with the child welfare system and have no idea that there are any resources. Finding and supporting those families has become one mission of the Cranston-based The Village for RI Foster and Adoptive Families (The Village) and the Warwick-based Hispanic Foster and Adoptive Parents Organization of Rhode Island (The Heart Tree).

The Village, established in 2016 by a group of five foster and adoptive families, provides peer support to all RI foster, adoptive and kin families. The Village provides support through peer mentoring, peer-led support groups and family events, as well as running a “Closet” where families both donate and receive material things such as clothing, toys, diapers etc. The Heart Tree, a sister organization, also provides those same supports in a culturally appropriate manner to our Spanish speaking families. The Heart Tree was established in 2021 to meet the unique needs of Spanish speaking foster, adoptive and kin families.

Sixty-three-year-old Laurie Tapozada is a kinship caregiver who sees the value of the assistance provided by the The Village in raising her 8-year-old grandson. “When it first happened and I was suddenly raising a baby at age 55, I didn’t know one single other family like mine, she said.

“My life was turned on its head, I was struggling to manage my hectic work schedule with a baby and dealing with all sorts of messy and painful family dynamics that come with being a kinship caregiver,” says Tapozada.

According to Tapozada, she had to re-educate herself as to how to safely raise a baby without getting support from family and friends who thought she was “crazy” for taking this on. It was overwhelming and distressing until she received a call from a friend who suggested that she “call the Village and they will understand.”  From that point Tapozada has become actively involved in the kinship community and network, “It been a life changer for me,” she says.

Although Rhode Island is recognized as a leader in ensuring that children removed from homes are placed with kin, increasing support for kin families is a pressing need.  In 2022, the Rhode Island Office of Healthy Aging awarded a grant (through funding from the U.S. Administration for Community Living overseen by the U.S. Department of Health and Human Services) to the Village and the Heart Tree, to identify informal kin families and help connect them to existing resources, and to the growing kinship caregiver community. 

RIOHA’s grant also funded a multi-faceted effort, in person and online activities, and incorporating traditional print, broadcast, digital and social media communication and training.  Throughout the year, exhibit tables were placed at family events, informational meetings and festivals to get the word out about available resource for kindship caregivers. This grant also created a statewide website where these individuals could go and learn more about resources, as well as find out what is happening in the kin community. This website is www.kinshipcommunityconnections.org.

Project Director Shannon Dos Santos, of the Village, sees the value and positive impact of this grant on Rhode Island’s kinship caregiver families. “I have seen the joy on the faces of many Kinship Caregivers aged 55 and over and their families over the last fifteen months as a result of this grant,” she says, noting that reaching out to this population and getting them to engage has been a challenge. “But when they do – it is beautiful to watch.”

According to Dos Santos, many just feel isolated, overwhelmed and alone. “This grant has allowed us to focus on community outreach and engagement as well as provided us with opportunities to enhance what we at the Village do so well – peer support and family activities!  “It has been a blessing to watch these families come together at these events, form relationships with others in  similar situations and feel safe sharing their experiences,” she says.  

The Village’s Chairman of the Board, Sue Babin, who is also full-time employee and a kinship caregiver, too, added, “This exciting grant initiative has provided The Village with an opportunity to continue to do what we do best… peer outreach and support from people with lived experiences.” And, while RI OHA’s grant ends this month, additional funding will extend the program for 12 months, she says.

For info about The Village for RI Foster & Adoptive Families (The Village), go to https://www.rivillage.org/. Or call (401) 481-5483.

For info about Hispanic Foster and Adoptive Parents Organization of Rhode Island (The Heart Tree), go to https://sites.google.com/view/thehearttree/homeinicio?authuser=1.  Or Call (401) 306-9652.

For info about Kinship Community Connections, go to https://kinshipcommunityconnections.org/

WPRI 12’ s Rhode Island Video on Foster Care Month, go to https://www.youtube.com/watch?v=AhI206EXBfQ.

For a copy of the recently released research study, Caregiver Profile: A Closer Look at Grandparents Caring for Grandchildren, by NCFS at the University of Pittsburg, go to

https://www.caregiving.pitt.edu/caregiver-profile-closer-look-grandparents-caring-grandchildren

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:

Click to access H5200A.pdf

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:

https://www.rilegislature.gov/pressrelease/_layouts/15/ril.pressrelease.inputform/DisplayForm.aspx?List=c8baae31-3c10-431c-8dcd-9dbbe21ce3e9&ID=373660.

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.