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New Year, New Home Care Wishes for 2022

2021 has been an incredible year for home care advocates, who continued to discover that meeting with legislators and sharing their personal home care stories did not have to occur in-person only. Embracing an increasingly digital world has been an advantage to many home care clients, caregivers, and families who are home-bound or have mobility issues—or are just plain too busy to be able to travel to and from legislative meetings.

Additionally, in the second year of COVID, many state and federal decision makers started to truly understand why home care makes sense: It keeps vulnerable individuals at home and out of potentially-infectious institutions, and it saves Medicaid programs money by doing so. 2021 was filled with many legislative accomplishments in which lawmakers opted to increase funding for home care programs in light of the ever-persistent challenges home care clients and families continue to face—primarily the difficulty in accessing home care when there is still—despite increasing funding—a workforce shortage.

In-home nurses, home health aides, and other caregivers are the backbone of the home health care industry. Home care would not be possible without these compassionate heroes that help families stay together. And while 2021 was filled with accomplishments, two advocates share their New Year’s hopes and show us why we all must recommit ourselves to home health care advocacy in 2022.

Below, see what home care client Ari A. of North Carolina, and home care mom Jill P. shared with us regarding the challenges they still face, and what they hope to see in the New Year.

Ari A. – Home care client in North Carolina

Ari with nurse Katrina Clagg, LPN.

I can’t tell you how much of a God-send it was to recently learn the fantastic news. NC Governor Cooper signed a budget that raised the Medicaid reimbursement for Private Duty Nursing (PDN) by 13.6%! I know so many people, including myself, who have been struggling to get their shifts covered because of low pay. These struggles go back several years, even before the pandemic. COVID -19 just made the staffing crisis in home care more visible to the public. I’m glad it did. It meant that the NC legislature could see more clearly the dire need, and they acted. Talk about seizing the moment! For this, the NC General Assembly will forever have my gratitude. 

Now that PDN can be more competitive with higher pay, hopefully nurses in other fields will see why we love home care. We love it because it is a protective shield that protects patients like me from the harm that can happen to us each and every day. Just last week my airway became totally blocked all of the sudden. Once again, one of my nurses saved my life. She acted professionally and calmly as she quickly fixed the problem. I wouldn’t have gotten such a fast response anywhere else other than one-on-one care at home. Without it, I certainly would have died. 

Home care to me also means love. I get to spend my life at home, sharing the love of my family, instead of being stuck in a medical facility, or not alive at all. It’s the best Christmas gift that keeps on giving all year round! 

So for all you working in the hospital or as a travel nurse, I have great hopes for 2022. Home care overall is fast becoming the new front line of medical care. More and more people that need complex care are coming home from the hospital and we need you! Simply put, taking care of people in their own home is the best way to advance your skills and help vital members of the community as well. Chronically ill patients like me are ready to welcome you into our homes with open arms. You will find that it is one of the greatest gifts you will receive! 

With Much Thankfulness, 

Aaron “Ari” Anderson 

Jill P. – Maryland mother of home care client Nadiya

Nadiya (front) is able to spend the holidays at home with mom Jill and her family

Nadiya shares a smile in her MD home.

Our 17 year old daughter Nadiya has life threatening seizures and multiple complex disabilities caused by a rare genic disease. She relies on night nursing to keep her safe. It is essential but for the last several weeks we have had only 2 of our 7 nights covered.

It is difficult to find capable, reliable nurses who have the skills to manage complex unpredictable seizures and assist with her activities of daily life. Because we live close to DC, many good nurses choose to work in DC where they can make more money through higher Medicaid reimbursement rates.

My child’s future health and safety as she transitions into adulthood, is reliant on home care. This is a great concern for our family. The pandemic has made this already complicated problem much worse. For 2022, I hope that more state and federal lawmakers continue to see how impactful home care is for families. I hope that more families become involved in advocacy and share their stories so that there is a groundswell for better wages and incentives for these frontline workers.

Home care nurses are an essential support that need to be valued and compensated competitively for their important work. Until that changes Nadiya’s future care is not secure. 

Jill Pelovitz

Parent, Caregiver, and Passionate Advocate

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Pennsylvania Home Care Recipients Advocate for Better Access to Home Care

 Pennsylvania ranks seventh in the nation for the percent of its population that is 65 years of age or older1. As Baby Boomers continue to age and the population of older adults needing long-term care increases, the need for caregivers will continue to increase as well. Since COVID shined a light on major drawbacks of congregate living facilities like nursing homes and institutions, it is not just the elderly population that are choosing to be cared for at home. This is great news for the hundreds of thousands of individuals and families who prefer to age at home rather than in a facility. However, it also poses a major problem: there aren’t enough caregivers to take care of the current Pennsylvania population at home let alone the 29% growth that will occur by 2028, leaving a shortage of 73,000 home health aides2. This is due in large part to low state funding for Medicaid programs like Pennsylvania’s Personal Assistance Services (PAS) that cares for medically fragile individuals.

Stephen Hoppy from Luzerne County, PA with his home health aides

This is where our advocates come in. Home care recipients across the Commonwealth have banded together to help alleviate this growing caregiver shortage. Advocates like Stephen Hoppy from Luzerne County, PA are speaking out and helping raise awareness of the inadequate state funding. Stephen is approved for 20 hours per day of care from the PAS program, but since he cannot find enough caregivers to cover all those hours, he has been paying $500 per week out of his own pocket to help secure that coverage. Recently, Stephen was interviewed by FOX56 News about how the caregiver shortage has affected him.

“I am advocating because our healthcare system is compromised. There are plenty of people worse off than me that can’t get home care, which is unacceptable. These home health aides are medical professionals, and they need to be paid for their expertise and knowledge,” says Stephen.

COVID has only exacerbated this issue, with a mass exodus of health care workers no longer willing to risk their lives for a career that yields an average of only $12.40/hour. BAYADA Home Health Care has had to deny 40% of PAS cases in 2020 and 2021 because there were not enough caregivers to staff the cases. Teri Henning, the executive director of the Pennsylvania Homecare Association (PHA), says she’s hearing similar numbers from PAS providers across the board. “They simply cannot compete for the workforce,” she says. “Home health aides can earn more money doing similar work in other state home care programs, or in nursing homes, or even doing less physically- and emotionally-demanding work at Amazon, Target, or in fast food.”

“BAYADA Home Health Care has had to deny 40% of PAS cases in 2020 and 2021 because there were not enough caregivers to staff the cases.”

Pittsburgh resident, Maria Kolat with son Matthew

Home care advocate and mother, Maria, from Pittsburgh has also joined Hearts for Home Care’s advocacy efforts after experiencing these issues firsthand with her 22-year-old son, Matthew, who is developmentally disabled and requires non-stop supervision. Since COVID, their lives have dramatically changed—his schooling, his ability to receive psychological and medical care and—very significantly—his family’s ability to access the home health aide (HHA) care that Matthew needs and is qualified to receive. Maria and Matthew were featured on Pittsburgh’s local KDKA 2CBS station advocating on behalf of home health aides.

“Aides are leaving the caregiving field to work at big retail like Walmart and Amazon—or in fast food,” says Maria. “They can make $15 an hour or more there. When we see a revolving door of aides, Matthew can’t get the one-on-one care he needs, which puts him at risk.”

Home care advocates like Stephen and Maria give life to our advocacy efforts ─ their real-life experiences aren’t just numbers and statistics, but genuine struggles that thousands of Pennsylvanians endure every single day. They help tell the story so that legislators and influencers can fully grasp how their decisions are affecting their constituents and communities.

Home care advocates like Stephen and Maria give life to our advocacy efforts.

At the end of the day, when aides are not being drawn into working in home care, it’s Pennsylvania’s most vulnerable residents like Matthew and Stephen who suffer. PHA, home care providers, and advocates are asking the State to increase funding for the PAS program. Additional funding would put home care agencies in a better position to recruit and retain more HHAs, and thus ensure that PAS beneficiaries can continue to access the care they need to stay safe and healthy at home.

  1. https://www.leadingagepa.org/Portals/0/154869%20Long%20Term%20Care%20Statistics%20Book%20revised%20final.pdf page 14.
  2. https://mercer.healthcare-workforce.us/ +math

Advocacy Matters!

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 advocacy@bayada.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.

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2020 Ambassador of the Year: Brad Needham

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.” That’s why we created the Hearts for Home care program. The more voices in support of home care, the better we can protect the industry and the millions of US residents in need of this care. If politicians, media, and key decisionmakers aren’t aware of the challenges facing home care today–and the essential benefit it provides to our most vulnerable populations—they won’t be part of the solution.

So, 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. 

Last week, Hearts for Home Care presented the 2020 National Ambassador of the Year Award to director of Assistive State Programs in Delaware, Bradley Needham for his role as a dedicated, passionate, and influential ambassador. Throughout 2020, Brad quickly became one of Delaware’s “go to” senior ambassadors, solidifying himself as a strong leader in the advocacy realm. There has never been an elected official who he hasn’t been willing to speak with, a town hall he hasn’t been willing to attend, or an action alert he hasn’t acted on.

Delaware State Representative, Mike Smith congratulating AOTY winner, Brad Needham.

Brad brings tremendous passion to his work as a senior ambassador, as well as a knowledge of home care that almost always sets the tone for his legislative meetings. Even as 2020 brought new and unique challenges to the government advocacy space, Brad continued to meet them head on, going so far as to take ownership of developing and maintain relationships with new and veteran legislators on both sides of the aisle.

Brad helped lead the effort in securing a home health aide rate floor in Delaware, ensuring home health aide reimbursement rates are equitable or above market averages. When organizations like H4HC advocate for those who can’t advocate for themselves, change for the better can happen ─ new laws are drafted and policies are amended to strengthen support of these important services.

Advocacy Matters!

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 advocacy@bayada.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.

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Home Care Has a Distinct Place in the Future of US Healthcare

States are beginning to make key changes to increase families’ access to home care

The COVID-19 pandemic has increased people’s awareness of the US healthcare system’s dependence on institutional care, and the potential dangers that come with a reliance on congregate healthcare settings. Nursing homes and hospital are a necessary part of the healthcare continuum, but COVID has undoubtedly increased the public’s appetite for—and governments’ understanding of—accessible home care.

90% of America’s seniors say that they prefer to age in place…

COVID may have a long-term effect on healthcare policy, as it has shifted the spotlight to the inherent benefits of home-based care. Home care is cost-effective: It costs governments, insurance companies, and individual families less to provide care in the home than in a hospital or facility. It’s also patient preferred: 90% of America’s seniors say that they prefer to age in place, and families with medically-fragile children and adults know their loved ones do better when they are in their own home environments.

In general, across the US, funding for home care programs continues to lag behind funding for services delivered in facilities like hospitals and nursing homes.

Home care advocates—state and national home care associations, providers, home care employees, and clients & families—have been advocating for better funding and better policies for home care for years with mixed success. In general, across the US, funding for home care programs continues to lag behind funding for services delivered in facilities like hospitals and nursing homes. But in this first post-COVID budget season, advocates have seen successes!

We’ve moved the needle: Several states increased their Medicaid funding for home care programs. The New Jersey legislature increased funding for home care by $2 more per hour, and for skilled nursing home care by $10 more per hour. Additionally, Delaware increased funding for skilled in-home nursing by 15%, and Georgia, Indiana, Missouri, and Pennsylvania have increased funding for private duty nursing by 10% or more. Thank you to these states for recognizing the importance of home care.  Increased funding will help thousands of children, seniors, and adults with disabilities and medical complexities access the home care they’ve been struggling to access due to caregiver shortages that have plagued the nation.

Other states have increased funding for home care at smaller increments, including Minnesota and Vermont. While any increase is appreciated, there is still work to do in these states and many others: Increasing funding, and reviewing it regularly, is essential in ensuring that caregivers’ wages can remain competitive as costs of living continue to rise year by year. If home care funding is raised now, but then ignored for years to come, then families that need home care will be back to the same situation they were in pre-pandemic: Struggling to find the care they need to stay safe and healthy at home.

On behalf of the home care community, thank you to the many legislators and decision-makers who have supported home care this year!

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Hearts for Home Care Brings Legislative and Public Awareness to over 43 Million Viewers

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 Director and Hearts for Home Care’s Senior Ambassador Hakeem Gaines speaking to reporters about the workforce shortage and retention issues with North Carolina’s Private Duty Nursing (PDN) program.

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!

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Home Care and Independence

Lee-Ann Quinn with son Zach. (PBN PHOTO/MICHAEL SALERNO)

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.

Zach with his siblings and home care nurse, Jeff.

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. 

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.

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!

Zach and family with Rep. Julie Casimiro during a home visit a few years ago.

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?

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Celebrating and Recognizing Individuals with CP, TBI, & MS

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 painting with her long-time nurse, Jen Saulsbury.

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.

Fun fact about Jenna: She loves The Wiggles, all kinds of Disney music, and the mall! She also eats mashed potatoes and gravy just about every day!

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 with his dedicated nurse and the 2017 LPN National Hero, Debbra.

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.”

Traumatic Brain Injury Awareness Month: Client Spotlight

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 Awareness Month: Client Spotlight

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 advocacy@bayada.com.

Together, we can leverage our voices to tell state and federal decision-makers, “I care about home care, and you should too.”

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Patient Recognition Week: February 1-7

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.

Mr. Mendenhall (left) meets NC Rep. Hawkins while his wife looks on. They want to do what they can in order to show state and federal lawmakers how important home care is.

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.”

Supermom LaToya is pictured here with her son, Massiah.

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 is a disability rights advocate from PA to DC and beyond!

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.”

NJ mom Dana Insley testifies at a public hearing in Trenton.
Dana (second from right) is pictured with her family, including daughter Abi (second from left in white & pink)

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 writes opinion 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 advocacy@bayada.com today!

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DE Mom LaToya Martin Makes Headlines to Advocate for Son Massiah

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.”

LaToya’s opinion piece was published in USA Today Network’s Delaware Online, and was also picked up by Scary Mommy—a powerful website for millions of women that coins itself “one of the largest, most influential and trusted sources of entertainment and information for millennial moms online.”

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.

Advocacy Works:

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 advocacy@bayada.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.

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Advocacy in Delaware: Super-mom Kateri Morton Advocates on ABC and in Dover

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.”

One of the most compelling aspects of the reimbursement rate issue in Delaware and across the US is that increasing families’ access to home care would save state Medicaid programs significant funding dollars that currently go toward care that residents receive in ERs, hospitals, and other facilities.

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!