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.

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.

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!

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!

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?

Better Speech and Hearing Month: Using Communication Devices to Advocate

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.

Pictured: Disability rights advocate Mark Steidl (center) joins the Pennsylvania Homecare Association’s Advocacy Day in Harrisburg to tell legislators about what home care means to him. He is pictured here with BAYADA Home Health Care Hearts for Home Care Ambassador Kimberly Gardner (left) and CEO David Baiada (right).

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 advocacy@bayada.com

Advocacy and Autism Awareness Month Collide

In honor of Autism Awareness Month, Hearts for Home Care is celebrating those living with Autism Spectrum Disorder and raising awareness on the issues they face every day.

26-year-old Grant Williams with father Bob.

Grant Williams is an active and intellectually curious 26-year-old living with autism, cerebral palsy, and was born with a Traumatic Brain Injury (TBI). However, none of those diagnoses slow him down! “Grant isn’t a geriatric—he is energetic and needs to be able to go outside and engage in his environment daily. But he can’t do it alone—his cognitive and communication skills, plus his balance and coordination, prevent him from being fully independent,” Grant’s father, Bob Williams says. That’s where Grant’s home health aides come to his assistance.

Grant is part of the New Jersey Personal Care Assistant (PCA) program – a state-funded program that allows qualifying adults and seniors who may otherwise be relegated to full-time facility care (i.e. nursing home), to remain in their communities as independently as possible with assistance from home health aides (HHAs). This program assists individuals living with physical and developmental disabilities with daily activities like dressing, bathing, walking, and tasks that would otherwise be too difficult or too dangerous for the individual to perform alone. The PCA program has been a lifeline for the William’s family for the past five years and since COVID-19 hit and shut down Grant’s full-day program, care at home became even more vital to their family.

Grant with HHA Grace.

Bob also has his own permanent disability, and Grant’s HHA care was especially critical after Bob’s invasive back surgery all but incapacitated him in December. “Grant is a big guy — he’s about 5’11 and 175 pounds, so I can’t manage him with my own health issues, plus his,” says Bob. However, finding a home health aide for those who are qualified for the PCA program and authorized by their doctors for home health aide care still isn’t easy. Grant has had many aides leave for other industries and settings. Bob has seen a revolving door of aides and understands why it is so difficult for them to stay in the industry, even if they love what they do: “Aides who love their work tend to leave the industry to receive a higher education degree, or to find work in other settings like hospitals or nursing homes. At the end of the day, they can’t make fair wages in the home care field,” says Bob.

Bob has been an avid advocate for Grant throughout his life, ensuring he has the best care and opportunities possible. However, this past year Bob has jumped through hoops to ensure the safety of his son and those taking care of him. When his treasured aide Grace was having difficulty getting to and from Grant’s parents’ homes from her hometown of Camden due to public transportation issues stemming from COVID, Bob took it upon himself to drive Grace to and from her shifts. Now, Grace, like many of Grant’s former aides, has been reassigned to a new client closer to her home.

“It’s a revolving door of aides—and Grant’s ability to continue to learn and habilitate is affected. The workforce is thinning out—and COVID is making it more difficult for people to enter the home healthcare industry because of the dangers of the virus and the unsustainability of low wages in the field.”

Grant and Bob were recently featured in a Scripps Network piece highlighting these exact issues that have plagued state-funded home health programs for years and have only been exacerbated due to COVID-19.

Scripps Network piece shedding light on the demand for home health aides across the country ─ featuring Bob and Grant Williams.

Bob continues to go above and beyond to advocate for his son in hopes that New Jersey’s governor and legislature will consider expanding access to home health care and services designed specifically for autistic and other developmentally delayed individuals. The state’s PCA program and many other home and community-based services (HCBS) are fully funded by the state. And—as the state population continues to age and as more individuals and the government see the health, safety, and cost-savings benefits of home care—it is important for state governments to ensure that the workforce is sufficient to allow residents and their families the care they need to stay safe in their homes, and as independent as possible within their communities.

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.

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.”

We Need In-Home Nurses to Get Our Babies Home!

Two Pennsylvania mothers share how more needs to be done to ensure all medically-complex families can stay together at home

Leena Stull is safe, healthy, and happy at home after spending her first 9 months in CHOP’s NICU

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.

“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.” 

“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.”

Gemma pictured here leaving Geisinger Hospital and coming home with mom & dad. Her shirt reads, “Peace out NICU, I am moving in with my parents.”
Continue reading “We Need In-Home Nurses to Get Our Babies Home!”

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.”

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!