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 printbroadcast, 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

To the Class of 2022: Age boldly, enjoy your journey

Published in RINewsToday on May 16, 2022

According to Research.com, this year commencement speakers at colleges and universities in Rhode Island will impart their “pearls of wisdom“ to 19,782 graduating college seniors and their families. The usual commencement speech, traditionally about 10 minutes in length, offers simple tips and observations that, if taken, just might offer the young graduates a more rewarding personal and professional life ahead. Social media platforms and websites will quickly disseminate this sage advice given by well-known lawmakers, judges, television personalities and CEOs, to millions across the globe.

Globe columnist Dan McGowan gives his readers in the Rhode Map, the paper’s free newsletter about Rhode Island, a who’s who list of well-known commencement speakers that will gather at Rhode Island’s 12 Colleges and Universities to give the Class of 2022 advice on making their new journey in the world amidst the continuing COVID-19 pandemic causing sweeping societal changes in the workplace, health care, and social activity. 

McGowan’s detailed listing of “marquee names” delivering commencement speeches at Rhode Island’s colleagues and universities are:  

House Speaker Nancy Pelosi at Brown University; Emmy Award-winning actor and director Henry Winkler at  New England Institute of Technology; Human Resource Guru William J. Conaty at Bryant College; Rhode Island Governor Dan McKee at CCRI; Big East Commissioner Val Ackerman at Providence College;  Entrepreneur and Author Bruce Poon Tip, Founder of G Adventures; Miriam Hospital President Maria Ducharme at Rhode Island College, Deep Sea Explorer Robert Ballard noted for his work in undersea archeology at URI; Graphic designer, educator and Author Cheryl D. Miller at RISD; Navyn Salem, who founded the nonprofit Edesia, Inc. whose mission is to treat and prevent global malnutrition at Salve Regina; and Dr. Anthony Fauci, Chief Medical adviser to the president at Roger Williams University.

This year’s commencement speakers are very well-deserving of their honor to address Rhode Island’s graduating college seniors.  But if I had an opportunity to speak before the graduating class of 2022, here are my thoughts and tips I would give, centered on the importance of aging gracefully and boldly over your accumulating years, and they will accumulate faster than anyone could imagine.

Aging can be viewed as a life-long, unpredictable journey.  A slang phrase in Wikipedia sums up “a simple existential observation that life is full of unpredictable events. Over the years, you might have heard the phrase, “Shit Happens.” Many people choose to hold on to their fading youth, not wanting to look in the mirror to see wrinkles, sagging stomachs, and even gray hair.  They hold fiercely to their memories of the 1963 Pepsi Generation commercial that celebrated youth and active people.   

It’s so easy to say, accept and embrace your aging.  

You will be tempted to chase after prestige, power, the perfect relationship, or a high paying job.  I say being healthy is your most important possession you can have in your lifetime. Cherish it. Work towards it. URI Gerontologist Phil Clark once told me, “Use it or lose it. Stay as physically active as you can.”  “If you rest, you rust,” he says, noting that physical exercise elevates our mood and benefits our cardiovascular system, too. This conversation took place over 25 years ago, and I still remember this advice.  

Before the COVID-19 pandemic, a North Attleboro couple, Mark and Nancy Shorrock began dining daily, seven days a week, if their schedules permitted, at Spumoni’s Restaurant in Pawtucket.  Over the years, they developed personal relationships with around 30 couples who frequented the informal restaurant and bar. While not a support system, that informal group who knew each other innately, benefited the Shorrocks, and I would think all of the people who kept coming back as regularly as they did. 

The importance of being around others is documented in a 2017 national report. The Global Council on Brain Health (GCBH) report, released by AARP, cites strong scientific evidence that behavior changes and lifestyle habits can positively impact one’s brain health. It’s not uncommon for social networks to shrink as we age. “Research tells us that larger social networks may positively impact your health, well-being, even your cognitive functioning,” said Sarah Lock, AARP Senior vice president for Policy and GCBH Executive Director. 

So, as the decades fly by, work to maintain your social network of family and friends to maintain good cognitive functioning. And while you may build your on-line networks, do not overlook the greater importance of the in-person kind, those you break bread with, share what your children may be doing, or call just to hear a voice who knows a whole lot about you, without your even having to say it.      

Research also tells us that you can also reduce your risk of cognitive decline by exercising your brain. Take time in your busy day to read newspapers, magazines, and books, or even play a challenging crossword puzzle, build your vocabulary, learn a new skill, even play chess.

Being a volunteer can also be a protective buffer from the curve balls that life may throw at us as we age. “Volunteering can be medicine for the soul. It allows you to connect with other people, explore and remedy emerging community issues, make a difference as a caregiver or mentor and change lives. Volunteering is powerful and can define and redirect your life’s journey,” says Vincent Marzullo, who for 31 years served as RI’s National Service Director and still volunteers weekly at Hasbro Children’s Hospital.

When you require help, don’t be afraid to ask your family, friends or even professional colleagues for support and assistance. People will always go up the ladder of their careers, even down, too.  Take the opportunity to be there for not only people you know, but also strangers when they need a helping hand to jump-start their faltering personal relationships or professional careers. 

Time really does fly after you graduate college.  Don’t be afraid to pivot in your career – you may have spent 4 years or 8 years or many more studying and becoming an expert in a particular subject, but find your passion calls you to another career-path. Don’t be afraid to take the path that calls out the loudest for you. As you move into your middle or later years, view your life as a meaningful journey, living in the present, not tied to past experiences, nor possible future events. It’s the journey, not the end result, that you should focus on.

Amma, a well-known Hindu spiritual teacher, tells her millions of followers to view their life as a ‘canceled check.’ Let go of those past regrets, forgive yourself for those mistakes especially made in childhood and teenage years, more important those you made as you move into your middle or later years. Don’t regret passing up personal or professional opportunities, for others will follow, she says. Use your time on earth wisely; don’t waste it carrying the burdens of past guilt or personal grudges. Think about that.

View your life as being back in high school, learning from each positive and negative experience you encounter. When you confront life’s health, financial, and personal and professional challenges, keep a positive attitude. Don’t be overwhelmed by negative thoughts. Each day you will make daily choices as to how you will react to your problems. In these situations, you can either see the proverbial glass as either being “half-full” or “half-empty.” A positive attitude allows you to see a “half-full” glass, thus allowing you to successfully overcome the adversity.

As we grow older, we sometimes put too much energy into reflecting on our personal and professional defeats, being depressed on the “bad hands” we were dealt. Savor your victories, but always forgive yourself for your shortcomings and failures. Learning from your shortcomings and defeats will build a strong bridge to future successes.

Also, forgive others who have hurt you personally and professionally. You cannot live or reconcile your life peacefully if you are still holding onto grudges, anger, and bitterness, all tied to past relationships or negative employment experiences.

Writer Simon Kent tells us a powerful story about forgiveness in an article penned in 2013 on the Toronto Sun’s website. When Nelson Mandela’s National African party won the election that would end apartheid in South Africa, he forgave his white political foes, says Kent, noting that the power of forgiveness kept the black majority ruling party from seeking revenge.

According to Kent, at his 1994 inauguration, Prisoner 46664 — Nelson Mandela — had kept a seat set aside for a very special guest he wanted to witness his swearing-in as President, the highest office in the land. This person, one of his former jailers from Robben Island, where he was held for 18 years of hard labor. 

Why do we continue to hold anger, bitterness, and grudges against others? If Mandela can easily forgive his former jailor and a white society that kept his black brothers and sisters enslaved for centuries, why can’t you forgive others, too? 

Pass on your hard-earned wisdom. As you begin to accumulate more of life’s professional and personal experiences, share your story with others, especially those younger than you. By the time you reach your twilight years, you will have accumulated a huge reservoir of untapped wisdom gained from your life’s journey from making both good and bad decisions.  When taking on the new role of parent or grandparent, always continue to share your insights and lessons you have learned to your children and grandchildren.  The generations following you will lose out if you remain silent and keep your knowledge and history from them.

Get off the treadmill of life. Learn to slow down and enjoy the simple moments of your life. In her books and lectures, nationally-acclaimed author Connie Goldman, has stated that the simple act of watching a beautiful sunrise or sunset or even puttering around your garden can be as stimulating as a jam-packed calendar of activities.  

My final thought – nothing is guaranteed in life except death, taxes, and even, hopefully, growing old. So, Class of 2022, I urge you to make the most of your life that is just beginning to unfold before you. Don’t focus on the end result. Focus on the journey. Sometimes it is not the big things that you do that count, rather the simple daily acts of loving kindness you give to all those around you.  

Enjoy your new journey. Age boldly.

Caregivers Flying Blind in Providing Complex Medical and Nursing Care

Published in the Woonsocket Call on April 21, 2019

Half of the nation’s 40 million family caregivers are performing intense and complicated medical and nursing tasks, managing multiple health conditions for their family members and friends, says a newly published AARP report.

AARP’s special report, “Home Alone Revisited: Family Caregivers Providing Complex Care,” released April 17, 2019, takes a close look at specific medical and nursing tasks (including giving injections, preparing special diets, managing tube feedings and even handling medical equipment) that family caregivers are currently doing. It’s a follow-up report to AARP’s 2012 Home Alone Study that took the first in-depth look at how caregivers managed providing complex medical and nursing care that was formerly offered by trained professionals.

Changes in the Health Care System Can Support Family Caregivers

“This report shows the extent of complex tasks that millions of family caregivers are providing every day. They are largely alone in learning how to perform these tasks,” said Susan Reinhard, RN, Ph.D., Senior vice president and Director, AARP Policy Institute, in a statement announcing the release of the a 56-page report. “About half of family caregivers are worried about making a mistake. We need to do a lot more across the health care system—with providers and hospitals—to help support these family caregivers,” says Reinhard.

Adds Rani E. Snyder, program director at The John A. Hartford Foundation, “Family caregivers are the linchpin in our health care system, particularly for older adults,” “This study shines new light on the diversity of family caregivers performing complex tasks—from men to millennials to multicultural populations—and is a rallying cry for an all hands-on-deck approach to creating age-friendly health systems that better support and prepare these often forgotten members of the health care team.”

The new statistics in this report shed more light on the demands of family caregiving,” said AARP Rhode Island State Director Kathleen Connell, a former nurse. “These described caregiving responsibilities sound like a task list for a team of home nurses, aides, dieticians, physical therapists and personal drivers who work without weekends off, much less vacations. Is there any question that people worry about making a mistake that compounds existing issues?,” she says.

“The takeaway is quite clear,” Connell added. “Caregiving is stressful and we need to expand efforts to provide assistance. And it’s a very big ‘we’ that I am speaking of. Families need to help out and share more responsibilities as well as offer respite for primary caregivers. Neighbors and extended family also can lend a hand. And we need government to continue to provide assistance through legislation that supports family caregivers. Caregiving responsibilities can be both daunting and exhausting. It’s the new reality. The good news is that as we raise awareness we can work together to improve the lives of caregivers, “ says Connell.

A Sampling of the AARP Report’s Findings

AARP’s Home Alone Revised Report report found that almost half of the caregiver respondents (48 percent) prepare special diets multiple times per day. Preparing these meals often involved taking precise measurements, following specific dietary guidelines, constant monitoring, and the use of special equipment for preparation and feeding.

Thirty percent of the respondents say preparing special diets are hard to manage, this being more challenging to men. Younger caregivers found it more difficult to manage this task than older caregivers.

The caregivers also reported that 54 percent of the survey’s respondents say they manage incontinence multiple times a day. Most say managing incontinence is more difficult than managing medications, helping with assistive devices and performing wound care. Seventy-six percent say they learned how to manage incontinence on their own. More than one in four would appreciate having assistance from another person to help.

According to AARP’s report, 70 percent of these caregivers are dealing with the emotional stress of managing pain relief in the middle of a national opioid crisis. More than four in 10 expressed concerns about giving the optimal dose. About four in 10 faced difficulties in controlling the pain of the care recipient.

Finally, 51 percent of the survey respondents assisted with canes, walkers, and other mobility devices while over a third (37 percent) dealt with wound care.

The researchers conclude that “uncomplicated world of ‘informal’ caregiving” no longer applies” to the nation’s caregivers. “In the current health care environment, it is presumed that every home is a potential hospital and every service that the person needs can be provided by an unpaid family member, with only occasional visits by a primary care provider, nurse or therapist,” say the researchers,” they say.

AARP’s Home Alone Revised Report is a must read for Congress and state lawmakers who can easily address the challenges caregivers face when providing medically complex care by crafting policies and programs that will provide support and resources to the nation’s growing number of caregivers.

This caregiving issue might be a good one for the U.S. Senate Special Committee Aging to study.

A Final Note…

AARP gathered the study’s data through a nationally representative, population-based, online survey of 2,089 family caregivers. This study employed an oversampling of multicultural groups, taking a closer look at difficult tasks, and putting greater attention on available resources and outcomes. The study’s sampling strategy ensured multicultural representation and investigated generational differences. Additionally, the researchers also explored certain topics in greater depth, including special diets, incontinence, pain, and the impact of social isolation on the caregiver.

The AARP Home Alone Study is a special report from the Founders of the Home Alone Alliance℠ (AARP, United Hospital Fund, Family Caregiver Alliance and UC Davis-Betty Irene Moore School of Nursing). With funding from The John A. Hartford Foundation to the AARP Foundation, the study took an in-depth look at the specific medical/nursing tasks that family caregivers are doing.

To read the full report, go to: https://www.AARP.org/ppi/info-2018/home-alone-family-caregivers-providing-complex-chronic-care.html.

Note: Updated April 22, 2018…