Hearts for Home Care has had a busy year, working to secure public and legislative awareness to home care challenges across the industry. Over the first half of 2021, the duo of Alisa Fox and Marissa Fogal has worked in conjunction with BAYADA’s Government Affairs office to urge legislators to recognize and address home care industry challenges through user-generated traditional media and social media coverage. Over the past three months, the Public Affairs team launched three state-wide media campaigns in Pennsylvania, New Jersey, and North Carolina focusing on the lack of state funding for both Private Duty Nursing (PDN) and Personal Care Assistant (PCA) programs, securing media coverage in major outlets like The Inquirer, NJ.com, and Spectrum News—all of which have garnered a total of 43,452,500 views.
Through their dedicated Hearts for Home Care social media efforts—which were formally added in September of last year—the Public Affairs team has been able to increase their audience reach to an additional 114,400 people over the three state-wide media campaigns, and these efforts only continue to grow.
BAYADA’s Public Affairs team, in conjunction with the Government Affairs office, continues to advocate for medically fragile individuals and bring legislative action to the issues these populations face. To stay informed on important home care industry news and media updates, please follow Hearts for Home Care Advocacy on Facebook and Twitter!
My name is Zach Quinn and in many ways, I’m similar to other 22-year-olds that are around me: I love board games, video games, and movies. I love my family—even though my three little sisters get on my nerves sometimes.
But I’m very different from just about every other 22-year-old I know in one big way: I have Duchenne Muscular Dystrophy (DMD), and I rely on home health care services for nearly all of my daily activities. These nursing and certified nursing assistant (CNA) services allow me to be as independent as possible—and allow me to live, in many ways, like my non-medically complex peers.
DMD is a degenerative neuro-muscular disease that causes the muscles in the body to weaken. DMD led to the loss of my ability to walk, and my needing a wheelchair. It has also led to the loss of lung function, which required me getting a trach and vent to breathe for me. I need to be medically monitored to stay independent, which is why I rely on home care in my daily life.
I wanted to write this blog post as a way to show the wider world that being disabled doesn’t make me—and others like me—so different, as long as we have the proper care in place.Home care allows me to maintain my independence. It takes a lot for me to do that, but it is worth it. I need nurses and CNAs to get ready every day. They help me get washed and dressed so I can get up in my wheelchair and start my day without my parents’ help. This makes it so I can hang out with my family, go out in my community, and be myself. I appreciate the life I have because of the care I receive from my nurses and CNAs, and it has changed my life.
I truly believe that home care is the future of healthcare, and that so many more people could benefit from it if it was more readily accessible. Home care keeps disabled adults and seniors out of nursing homes and other facilities, and it keeps medically-complex children and adults like me independent in our communities. From a wider scope, this allows many people to grow up at home, go to school, contribute to the economy, and contribute to the community. Also, by keeping people out of costly places like ERs, hospitals, and long-term rehab and nursing facilities, it saves state budgets’ and families’ money.
Another purpose of this blog post is to show what happens when things fall through. There is a huge gap in people’s ability to access home care, even if they and their families prefer to be at home. I’m no exception. I have had great nurses and CNAs leave the home care industry, which has led to my parents having to call out of work. They usually leave for better paying jobs—which is great for them, and often necessary so that they can support their own families. But it really affects me—it makes my care unpredictable for me and my parents, and makes it more difficult for them to count on care and know that they can sleep and work normally.
It also makes it a “revolving door” of caregivers in many ways. This has its own layer of problems, but in the end, the best way to prevent this is to ensure that caregivers like nurses and CNAs can make a sustainable wage and living in home care. I studied Digital Media in high school, and I wanted to pursue a career in video game design. There are so many individuals in RI and across the US and the world who are able to live good lives, get jobs, and provide to the economy and community as long as good home care coverage is available. I don’t belong in a nursing home—I belong in my own home, and in a place where I can design video games!
But I can’t accomplish any of this without home care. We need to make sure that enough people want to work in home care—that it is a rewarding and compassionate career path. In my home state of Rhode Island, and in nearly every other state in the US, professional caregivers like nurses, CNAs, and home health aides are paid less than their counterparts in other settings—like hospitals. This keeps institutional care as more readily accessible to people who need long-term support. The federal government and state legislators must make sure that home care is a viable career by funding home care programs better. This would allow nurses, aides, and other caregivers to be paid a fairer wage—and would allow more of the workforce to enter home care.
There will be a long time before we can say that home care is as accessible as care in other places. But this is one way to start.
After all, isn’t celebrating individual independence a huge and important part of our collective American culture?
May is Better Speech and Hearing month and we would like to celebrate how our Hearts for Home Care advocates, Mark Steidl and Ari Anderson have never let their diagnoses stand in the way of making their voices heard. They are an inspiration to so many of their peers and fellow advocates ─ stopping at nothing to help and improve the lives of medically complex individuals who rely on home care to keep them cared for and safe.
Mark Steidl, from Pittsburgh, PA, doesn’t let communication challenges stop him from sharing his story with legislators. Diagnosed with Cerebral Palsy, he uses a Dynavox communication device to educate lawmakers on the importance of home care and the impact his home health aides and nurses have had on him. Mark operates the device by using the switches that are affixed to his wheelchair at either side of his head. The Dynavox allows Mark to type out what he wants to say, and then the device’s speakers enable Mark to communicate out loud.
Mark and his mother travel to the state capitol in Harrisburg, and to Washington, D.C. at least once a year to take part in Hearts for Home Care lobby days — days in which dozens of advocates gather to make meetings with legislators that will be voting on home care-specific legislation.
In a conversation with Mark about his advocacy work, he said, “Thirty years ago – before the advent of electronic communication devices, I would not have been able to communicate with you. If I had been born in 1965 instead of 1995, my parents might have been told to send me to an institution instead of raising me at home with all the support I need. Times have really changed. Advocacy and new ways of thinking have created those changes. But much more needs to be done and much more can be done. We have to keep advocating for the changes and the opportunities we want.”
Ari Anderson, from Charlotte NC, truly understands the importance his home care nurses have had on his life, and because of this, dedicates his life to advocating for them and the other individuals who benefit from their care: “My nurses have provided me with life-sustaining care,” he says. “Most die from [Spinal muscular atrophy] SMA type 1 by age 2.” Ari was diagnosed with SMA Type I at 6 months of age. 38 years later, thanks to his dedicated nurses, new technologies, and medical therapies he is living his life healthy and independently at home.
With the help of his communication device, Ari has become a passionate advocate, inspiring all who meet him. His team of highly skilled nurses has also enabled him to graduate from high school, receive his bachelor’s degree, and earn a master’s certificate in technical writing. He now authors a column for SMA News Today and dedicates much of his time to advocating for home care and educating the public on its value. Most recently, using his communication device and eye-gazing technology, Ari brilliantly crafted a video he uses to educate North Carolina legislators about the impact of home nursing.
For Ari, skilled home care nursing has long-been a lifeline that has allowed him to grow up and thrive despite his prognosis. Most importantly, it has enabled him to be where he wants to be: at home.
Both Mark and Ari rely on skilled in-home caregivers to remain safe and cared for surrounded by their families at home. Like Mark says, the American healthcare system has changed and high-quality care at home is becoming the new norm as families and their loved ones choose home care over long-term care and nursing facilities. Lower costs of care and preventable hospitalizations are just two of the many reasons that home nursing care is optimal for the state and its residents.
However, skilled home nursing programs are state funded by Medicaid and the reimbursement rates given to providers are not enough to keep up with the competitive wages hospitals and long-term care facilities are able to offer. Without competitive wages, providers are struggling to attract qualified nurses to the industry, thus leaving medically complex individuals like Mark and Ari at risk without care. Our advocates are urging state legislators to invest in home care and raise reimbursement rates ─ as the future of our healthcare system is in the home.
Mark and Ari are super-advocates who are inspiring those around them to make their voices heard. For ways you can advocate for yourself, your loved ones, and your community at-large, please email firstname.lastname@example.org.
March is National Cerebral Palsy (CP), Traumatic Brain Injury (TBI), and Multiple Sclerosis (MS) Awareness month ─ Hearts for Home Care celebrates, educates, and spreads awareness about how home care benefits those diagnosed with these disabilities! To honor our advocates who share their voices on behalf of the many others living with these three diagnoses, Hearts for Home Care is rounding out March with a spotlight on five clients with CP, TBI, or MS.
Cerebral Palsy Awareness Month: Client Spotlights
Cerebral Palsy (CP) is the most common motor disability in a child. CP is a number of disorders of the developing brain that affects body movement, posture, and muscle coordination ─ 1 in 323 children have CP. However, because of home care, those affected are able to thrive at home independently with the help of their dedicated caregivers.
Haley Shiber is a 23-year-old artist, storyteller and advocate who lives with a form of Cerebral Palsy. Haley is wheelchair-bound and has used a communication device to speak since she was only a year old. However, her diagnosis has not held back her passion for advocacy! Haley worked with Delaware legislators throughout her young life to ensure that individuals with disabilities are empowered to live full and happy lives. Through Delaware’s Private Duty Nursing (PDN) program, Haley receives life-sustaining care from qualified nurses and home health aides that allow her to pursue her many passions including socializing with family and friends, gardening, reading the classics, riding her adaptive bicycle, and creating art.
Jenna Owen just turned 20 this past Friday, March 26! Happy Birthday Jenna! Jenna was born a twin with her sister Jade at only 28 weeks old, but sadly, Jade passed away in 2018. Jenna was diagnosed with Soto’s Syndrome and CP at a young age, so she is wheelchair-bound and relies on a speaking machine to communicate. She receives vital, in-home care from dedicated and qualified caregivers who allow her the independence and freedom to thrive at home. Jenna’s mother Phyleischa, is an avid supporter and advocate of home care. Most recently, Phyleischa sent a letter to Florida Governor, Ron DeSantis advocating for higher reimbursement rates for home care nurses as staffing shortages have become a serious and ongoing issue.
Davis is 27 years old and suffers from CP. He requires high-level of nursing care from a team of caregivers to keep him safe, comfortable, and thriving at-home. Due to Davis’s condition, he receives his medication and nutrition through a feeding tube and his nurses also must monitor his airway and medications. However, because of his dedicated nurses like Debbra, Davis still enjoys life surrounded by family and friends and watching his favorite TV shows! Davis’s dad, John: “I am grateful for the nursing services that BAYADA provides. The level of personal care Davis receives from the nurses is critical to his overall well-being. I can’t thank them enough.”
The CDC estimates over 1.7 million Americans suffer from a Traumatic Brain Injury (TBI) each year. About 80% are released from the hospital and go on to live mostly normal lives. But many suffer challenges for years to come and need care at-home to remain independent.
In June 2016, 22-year-old Matt Mayer suffered a tragic automobile accident, resulting in a Traumatic Brain Injury. After several months in various hospitals and over two years spent in a rehabilitation center, Matt was reunited with his family full-time in 2019. Due to the severity of Matt’s condition, he now requires a trach, feeding tube, and full team of specialized daytime and nighttime nurses in order to safely go about his daily life. As a result of Matt’s accident, he has been nonverbal and without most purposeful functions in each of his limbs for over 4 years.
Multiple sclerosis (MS) is an unpredictable disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body ─ and leads to symptoms such as numbness and tingling, muscle spasms, walking difficulties, and pain. MS is estimated to affect about one million people in the U.S.
John Williams is 76 years young and a military veteran. He served in Vietnam twice as Airborne in the 82nd Division ─ once from the draft and a second time as a volunteer. After retiring from 22 years of military service, he became a police officer and served his community for another 22 years. John was diagnosed with MS at 60 years of age, has dementia, and is now wheelchair-bound. However, he still living life to the fullest thanks to his compassionate home caregivers who help him live independently in the comfort of his home! John says he would do it all over again for his family and country.
John’s daughter Molly: “For my family, home care is very important. My dad has MS and dementia, but still wants to stay very independent. I live in Maryland and he lives in South Carolina, so home care gives us me the peace of mind that he is taken care of and can continue living his life with freedom. I’m very thankful for BAYADA and for his dedicated caregiver Arshala.”
Hearts for Home Care is a community of advocates that seek to share their voices and experiences to bring greater awareness of home care’s importance and impact on individuals with limitations and disabilities. Caregivers, family members, and individuals who are interested in advocating can contact us at email@example.com.
Two Pennsylvania mothers share how more needs to be done to ensure all medically-complex families can stay together at home
Parents of medically-fragile children face so many challenges throughout their lives, and 15-month-old Leena Stull’s parents fear for the future: As medical technologies enable hundreds of thousands of individuals live better, longer, healthier lives, they also create new challenges that the healthcare world must address. As the mother of a baby that has graduated from Children’s Hospital of Philadelphia’s (CHOP) NICU with home care nursing, Alexis Stull is advocating for Leena—and for the many children like her that have yet to be born.
Leena was diagnosed with IUGR in the womb and was delivered at just 27 weeks, weighing less than two pounds. She was diagnosed with bronchopulmonary dysplasia, meaning that her lungs are not fully developed and that she will need special medical care and equipment for the foreseeable future. She was immediately put on oxygen and ventilator support and placed in York Hospital’s NICU for more than 3 months, awaiting transfer to CHOP. Once a bed opened for Leena in CHOP’s NICU, Leena was there for 9 weeks until she and her parents were able to get to the Progressive Care Unit (PCU), where they were to be intensively trained on how to care for Leena medically for the remaining 3 months of her stay. “Because they know it would be difficult for us to find enough in-home nurses, they trained us to stay up for 24 hours straight,” says Alexis.
Alexis and husband Daryl were completely trained by mid-June, but were unable to take Leena home until proper nursing coverage was secured for her in her hometown of Chambersburg in Mid-August. It took nine weeks and three home health care agencies, plus CHOP’s case management team, to finally find a nurse that could care for Leena in her own home.
Now home for six months, Leena is thriving alongside her caring parents and their two dogs, Gabby and Meeko. But finding enough in-home nurses to cover the shifts that Leena needs remains a challenge. “Leena is authorized for 112 hours of skilled in-home care per week, and we can’t access even close to that much.” Currently, the Stulls are functioning with one available night nurse, and many of their nursing shifts aren’t covered. “We have four nurses and no back-ups if there is a call-out. On nights when [night nurse] Jess isn’t here, I will stay up to monitor Leena until 3am, when I will switch with Daryl and sleep until 5:30 before it’s time for me to wake up for work,” explains Alexis. “The lack of nurses puts Leena in danger, and it also affects our ability to provide for Leena as fully-functioning parents.”
Part of the reason there aren’t enough nurses to be in home care is because of the lower wages in home care, and the nature of the job. PA hospitals can offer higher wages for RNs and LPNs, which creates a recruitment and retention gap for providers like BAYADA that can only compete for a small portion of the nursing workforce. Additionally, medically-complex clients like Leena—who has a trach, vent, and feeding tube—require special skills and one-on-one care. Typically, such skills can allow a nurse to make more in wages at a skilled nursing facility. However, home care providers are limited by the state’s Medicaid funding formula, which does not reimburse additional funds for highly-trained nurses that can take on more difficult, higher acuity cases.”
In honor of Patient Recognition Week, Hearts for Home Care sends a warm and heartfelt thank you to the many patients and families that advocate every day!
Hearts for Home Care cannot be effective in changing states’ policies and program funding mechanisms without your stories. When those who are affected by home care—clients, their families, and their caregivers—share unique and personal stories, it creates real change. These stories illustrate to legislators how impactful home care is to their constituents, and why it is important that they create new laws and amend existing ones to maximize access to care for residents who need it most.
Advocating for yourself or for a loved one is rewarding. Sharing your voice can mean the difference between a legislator being unaware of home care’s impact, to their proactive support of home care. In honor of Patient Recognition Week, below are several real life examples of clients in advocacy action. Home care patients and families make all the difference. Thank you for all you do!
Delaware mom Kateri Morton has advocated for her son Joey in many ways, from being featured on local news station WMDT (47 ABC) to share how low state Medicaid rates have affected her ability to get all of Joey’s skilled nursing hours covered—to organizing a group of active moms to testify at upcoming state hearings on the issue! Not only have legislators heard her voice loud and clear, but now other DE moms have heard her and thereby gained the confidence needed to share their stories too.
Kateri’s advocacy on behalf of her son Joey has enabled state decision makers to hear about the importance of in-home nursing through many mediums—including print and broadcast media.
Durham, North Carolina’s Mr. Mendenhall is a 90-year-old armed service Veteran with Dementia. Due to his diagnosis and the accompanying physical limitations, he needs constant supervision and support—including assistance with everyday activities, such as dressing, eating, bathing, toileting, and moving around. Mr. Mendenhall lives at home with his wife, Margarite, of more than 50 years. She does her best to take care of her husband, despite her own medical challenges and limitations. While they both are frail, they are happy to be at home and together. They are able to stay at home through the home health aide services that he receives from his home health aide, Kashina, who comes in two hours per day to care for Mr. Mendenhall. Her caregiving services enables Mr. Mendenhall to remain as mobile as possible, as well as remain in his community.
While you’d think that their advocacy work is limited, the couple recently participated in a home visit in which NC Rep. Zack Hawkins. This enabled Rep. Hawkins to see firsthand how home health aides help keep constituents costly and potentially infectious facilities such as hospitals and nursing homes. After Rep. Hawkins’s visit, he helped the family connect with the VA to address challenges they were facing. Rep. Hawkins said, “As a lawmaker, it is important we support seniors. To ensure they can live a full life at home. Care at home is an important option, less expensive, and where people want to be.”
LaToya Martin is a super-mom who fearlessly advocates for her son Massiah. When she wrote an opinion piece for the Delaware Post, her powerful message led to many state legislators learning about how home care affects real people across the state. That message resonated not only with lawmakers, but also with moms and home care advocates from all parts of the US.Scary Mommy—one of the largest online resources for moms—even reshared her piece to the hundreds of thousands of readers that regularly access their site!
Mark Steidl of Pittsburgh, PA doesn’t let communication challenges stop him from sharing his voice. Diagnosed with Cerebral Palsy, he uses a Dynavox to communicate the importance of home care and the impact of his home health aides with his legislators! Mark and his mother travel to the state capitol in Harrisburg, and to Washington, D.C. at least once a year to take part in Hearts for Home Care lobby days—days in which dozens of advocates gather to make meetings with legislators that will be voting on home care-specific legislation.
In a conversation with Mark about his advocacy work, he said, “If I had been born in 1965 instead of 1995, my parents might have been told to send me to an institution instead of raising me at home with all the support I need. Times have really changed. Advocacy and new ways of thinking have created those changes. But much more needs to be done and much more can be done. We have to keep advocating for the changes and the opportunities we want.”
New Jersey mom Dana Insley steps up to the plate for any opportunity to advocate on behalf of her beloved daughter, Abi. After 2+ years of fighting, Dana and her husband adopted Abi, who needs skilled home nursing to be able to live a safe, healthy life alongside her siblings and loved ones at home. When she isn’t taking care of her family, Dana thinks of many ways to advocate. She has testified at many state hearings for increased home care funding, regularly writesopinion pieces to share with news sources and legislators, and always makes time to share her family’s home care experience with the public. Abi didn’t only get a second chance at life, but she also got a mom whose voice advocates on behalf of all New Jersey children and families with special needs.
This is a mere glimpse into the wide world of patient advocacy. Thank you to the many, many home care clients and families that take the time to advocate in a variety of ways. From a brief video meeting with a legislator, to a home visit with your medically-fragile loved one, to writing to your local paper, sharing your story helps lawmakers see the importance of in-home care, and empowers you to act as a voice for the many who are unable to advocate for themselves. We recognize you and appreciate you. To get involved in advocacy in your community, contact firstname.lastname@example.org today!
Delaware’s capital—Dover—has its fair share of advocates: Nearly every day, residents and special interest groups from around the state gather in Legislative Hall to share their messages with decision makers. Recently, LaToya Martin—mother of 7-year-old Massiah Jones—made her challenges with the state’s availability of in-home nursing clear to not only local lawmakers, but with many people across the nation.
“For LaToya, advocacy is part of her everyday life.”
For LaToya, advocacy is part of her everyday life. Massiah is medically-fragile and suffers from a rare seizure disorder as a result of complications from Tuberous Sclerosis Complex (TSC). LaToya regularly serves as Massiah’s advocate in calls and appointments with doctors offices, insurance, and with the state of Delaware. Due to her dedication to her son’s health and his ability to live his best possible life, Massiah has been able to grow up and thrive safely at home with her, and with the help of in-home private duty nursing (PDN).
Challenges accessing nursing care
Recently, Massiah unfairly lost many of his authorized PDN hours due to the COVID virus’s effect on his ability to go to school. Always going any length to be Massiah’s voice—and the voice of many other medically-complex families around Delaware and the US—LaToya shared her powerful and unique story, citing her challenges with accessing nursing care and the inability of home health care providers to recruit and retain enough nurses due to the state’s low Medicaid reimbursement rates for Delaware’s PDN program. Her topmost priority is to show Dover’s decisionmakers why there needs to be a change in order to ensure the health and safety of Delaware’s most vulnerable children, and to empower other mothers and caregivers to unify their voices to do the same.
Hundreds of thousands of mothers, fathers, guardians, and other caregivers have a story to tell, but understandably, find it difficult to find the time and opportunity to share their voices. At Hearts for Home Care, we help those that care about home care by enabling you to get involved at the capacity in which you’re able to do so. Email us at email@example.com or follow us on Facebook.com/Hearts4HomeCare in order to learn more about the home care advocacy community and find opportunities to get involved.
Mom Kateri Morton (right) was featured on ABC-47 with son Joey (left) to advocate for increased funding for DE’s PDN program
Hearts for Home Care super-advocate and super-mom Kateri Morton was recently featured on ABC-47 alongside her 8-year-old son Joey and his long-time nurse Diane to advocate for better state Medicaid reimbursement rates. To date, Delaware has not raised reimbursement rates for the state’s private duty nursing (PDN) program in 16 years. As funding for this important program falls behind rising costs of living and providing healthcare services, it’s families like Kateri’s that ultimately suffer.
“Most of our nurses have either left or stopped working in that area because of their own health factors. Or they had to go to different jobs for employment,” says Kateri. Home care agencies rely on the state’s reimbursement rate to provide nurses’ wages, supplies, training, and benefits. The 16-year stagnation has driven nurses to seek employment in hospitals and other facilities that can afford to pay nurses more in wages. As agencies struggle to recruit and retain enough caregivers, families experience more unfilled nursing shifts, sleepless nights, and struggles maintaining employment.
The COVID-19 pandemic has only exacerbated the issue, as staffing issues have limited nurses’ ability to care for high-risk clients and as precious personal protective equipment (PPE) has raised providers’ everyday costs. Nurse Diane says, “We’re struggling. We can’t retain our nurses, and with COVID going on, more and more families are being touched by home care nursing.”
The key to getting this issue on the top of legislators’ minds is to increase the number of affected family members who speak out and advocate on behalf of themselves and their children. Kateri’s network of DE moms and other guardians have shared their unique stories and struggles with one another, and with Delaware’s decision-makers. Recently, Kateri secured meetings with Delaware’s Medical Advisory Committee and the Department of Health and Social Services. “Advocating for Joey has empowered me. Without nursing, I can’t provide financially, physically, and emotionally to my fullest,” says Kateri. “As mothers of medically fragile children… when there is an opportunity to show an elected official how important this care is, that story paints a picture that a million facts and statistics cannot.”
Kateri recently created a Facebook group for DE families interested in advocacy. Check out her group and Hearts for Home Care to join others in advocacy opportunities today!
Advocacy became part of the culture at BAYADA Home Health Care a little over 10 years ago out of a need for a collective voice to speak on behalf of our clients, families, and field staff who are impacted every day by home care. As Chief Government Affairs Officer Dave Totaro, likes to say, “If you want to go fast, go alone. If you want to go far, go together.” And that’s what we did. We banded together a voluntary group of advocates within the company with the single purpose of acting as a voice for those in the home care community that may not have had the opportunity otherwise ─ they are our Hearts for Home Care Ambassadors.
Our ambassadors serve as the liaison between the Hearts for Home Care advocacy team and their co-workers and home care community. Their primary responsibility is to develop and foster relationships with their direct-constituent legislators to spread awareness and advocate for better wages for field staff, more approved hours for clients, and the overall governmental investment in the home care industry. Year after year, our ambassadors go above and beyond to ensure legislators are aware of the crucial importance of home care for so many families across the country.
A few weeks ago, Hearts for Home Care presented the 2019 National Ambassador of the Year award to Shelby Myers for her role as a dedicated, passionate, and influential ambassador. As an ambassador in New Jersey, Shelby’s advocacy efforts were abundant ─ She developed her own platform to share client and employee stories through a podcast, Clayton’s Voice, she arranged home visits in which she invited legislators into the home of a client to showcase the everyday process of care, she arranged legislative roundtables with office staff and key decision makers, and she also met with many legislators individually advocating on her own. For these reasons and many more, Shelby was the clear choice as the 2019 honoree.
“This award is truly a culmination of efforts by so many individuals. Although I humbly accept it, by no means am I the primary recipient – that honor should be given to the families I was privileged to represent. Their powerful and sometimes heartbreaking stories, were the driving force behind legislation in New Jersey. I have no doubt that their voices were echoed in the ears of our lawmakers as they were voting on important home care legislation. Our role as ambassadors is essential to the well-being of our clients, families, and the compassionate field staff that takes care of them. Hearts for Home Care offers something that many of them have lost – hope. H4HC shifts the impossibility of their situation to a probability of hopeful change. Not only can we evoke change legislatively, but we empower families by showing how even the smallest of voices can create the largest of changes ─ I truly held this privilege in the highest regard. As Emerson so eloquently expressed in his description of success, “To know even one life has breathed easier because you have lived. This is to have succeeded!” I feel enormously blessed and grateful for every family I met, every story I heard, and every hand I held this past year. Additionally, I want to thank all of the BAYADA employees who gave me the opportunity to meet their clients and families, to the Hearts for Home Care team for the advocacy experiences you foster to elicit change, and to all of my mentors – thank you for changing my life.”
Oftentimes, when we hear the word “advocacy” we think about
attending a BAYADA-sponsored lobby day in a state capitol or visiting a
legislator’s local office to ask him or her to support or oppose a piece of
legislation. While both those options are in fact forms of advocacy, they’re
not the only ones.
North Carolina client Dimpal Patel recently joined Hearts for Home
Care, a program that BAYADA’s Government Affairs Office began to get
clients, families, staff members, and the community at-large more engaged in legislative
advocacy. She expressed that she wanted to get involved, but as an individual
with a trach, vent, and wheelchair, she would need a lot of assistance
traveling to advocate in person.
The Hearts for Home Care team immediately encouraged her to
reach out to her local paper by submitting a short opinion piece about her
thoughts on home care. She shared an insightful
take on how her nurses enabled her to live on campus and graduate
from UNC Charlotte, as well as how important Medicaid is for her and so many
others that rely on home care.
The Gaston Gazette received her piece, but instead of
publishing it, they sent a reporter to Dimpal’s home to get a better look at
how home care impacts her life first-hand. The reporter spoke with Dimpal and
her nurse, Amy, about the importance of legislators’ mindfulness of continued
Medicaid funding—and her
story made the paper’s front page!
“I’ve always wanted to get more involved in advocacy because
I think it’s important that our state and federal decision makers hear our
voice and understand how important home care is in our communities… but I was
always worried because I can’t get to the state capitol or to legislative
hearings as easily as others can. I’m grateful that Hearts for Home Care has
given me the tools to help me begin my advocacy journey from home,” Dimpal told
Home care by its very nature often helps those with limited
mobility to live a full life and remain at home. That’s why the Hearts for Home
Care team developed a robust menu of advocacy activities—so that anyone who
wants to get involved in advocacy can! Reaching out to legislators via
traditional media or social media, calling into a town hall, sending a
newspaper clipping or an email are just a few of the many ways individuals can
advocate from their own home.
In today’s world elected officials and regular individuals
alike are bombarded with messages, from advertisements on the bus to a long
social media newsfeed, all the way to robotic phone calls and junk mail. It’s
important that we take a step back to cut through the noise to deliver our
advocacy message to state and federal decision makers: Home care is important to me, and it should be important to you too.