Blog Takeover: My Family Hosted a Legislative Home Visit ─ You Should Too.

My name is Lisa Letterman and my son John was in a severe car accident in 2020, which left him paralyzed from the neck down, unable to walk, talk, or breathe on his own. As he was preparing to be discharged from the hospital, I unfortunately was not aware of any other long-term care option other than a nursing facility, so I made the difficult decision to send him to a facility in Virginia. But after a short time, it was clear that John’s health and quality of life were deteriorating, so I started researching other care options until I found home care.

After a long and stressful separation, John was finally able to return home to receive in-home care under North Carolina’s Private Duty Nursing (PDN) services. Since returning home with one-on-one nursing care, his condition has improved immensely. He no longer requires a feeding tube, he is now able to talk on his own and is even slowly making progress in regaining movement. However, there is a new hurdle that we face: trying to find enough nursing coverage for John. There is a critical nursing shortage that leaves families like mine struggling to care for our loved ones on our own, putting us in a constant state of exhaustion and concern when we can’t get coverage. I knew that something must be done to fix this shortage, so I started to advocate.

Our experience with a legislative home visit:

Recently, John and I invited our North Carolina Representative, Dudley Greene into our home (virtually), to show the importance of in-home nursing services and to advocate for better access-to-care. At first, I wasn’t sure what to expect from the virtual visit, but I can tell you it was an incredible experience that I believe other home care families should consider when wanting to advocate and make a difference.

Before the visit, BAYADA client services manager, Rachel Miller, handled the logistics. Once we agreed to opening our home, she handled everything from scheduling, practicing our call, and keeping us updated. When the 30-minute meeting began, it was like Rep. Greene was sitting in our home having a conversation with us. He could see all of John’s machines, medical routine, and he listened to the challenges we face. It was clear by the look on Rep. Greene’s face that he was truly understanding our situation in a way that no letter, email, or phone call could describe. We had his undivided attention for 30 minutes and in that time, we showed him the power of home care. After the visit was over, both John and I were impressed with how easy and rewarding the process was.

Top Left to Right: BAYADA CSM, Rachel Miller; BAYADA Government Affairs Manager, Cai Yoke; BAYADA Director, Kristen Church
Bottom Left to Right: North Carolina State Rep. Dudley Greene, BAYADA client & NC resident, John Letterman during the virtual home visit.

Why I advocate:

I advocate for home care because I can’t image what it would feel like to go through what John, and others like him, have had to experience and not have anyone around to speak up on your behalf.  I have seen John in every stage of his recovery: in the hospital, nursing home and then at home. It is because of PDN that John is thriving and living the quality of life he deserves. I want other families to have access to this same high quality, in-home care, but without better state-funding, that won’t be possible.

John Letterman with BAYADA nurse.

Why YOU should participate in a home visit:

Legislators like Rep. Greene determine the budget and funding for these types of programs, so we must do our part to educate them as best we can. I believe that legislators want to make a difference in their communities and help their constituents, but most are not aware these issues even exist. The more that decision-makers understand of the benefits of in-home care, the more advocates we have supporting our cause. Whether it’s a virtual or in-person home visit, these types of interactions with legislators give them a glimpse inside our challenging environment and help them understand the importance of in-home care ─ something that an email, letter, or phone call could never convey.

Advocacy Matters!

Despite the fact that many people in government and regulatory positions agree that home health care is a cost-effective, patient-preferred solution, it continues to be prioritized below institutional care. Not investing in home care will decrease the supply of qualified workers, increase turnover, and compromise the quality of home care services. 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 visit our website  in order to learn more about the home care advocacy community and find opportunities to get involved.

Patient Recognition Week: Celebrating Patients Who Live Their Life to the Fullest Thanks to Home Care

For thousands of Americans across the country, home care allows them to be contributing members of society, giving them the freedom and independence to live life to the very fullest despite their diagnoses. During National Patient Recognition Week, Hearts for Home Care celebrates some of these unique and inspiring patients who are foraging their own path and letting nothing slow them down. These individuals are proof that quality, in-home care, can truly change someone’s life for the better.

La Mondre Torohn Pough

La Mondre Torohn Pough, South Carolina.

LaMondre Torohn Pough not only lives his life in his community, independently, but is also contributing member of society. Thanks to the support of home health aides who care for him and keep him safe at home, LaMondre has become a highly successful businessman, owning his own podcast, 5P with LaMondre, and company that focuses on inspirational speaking, entrepreneurship, and consulting. If it weren’t for his in-home caregivers, LaMondre would need to be cared for in a long-term care facility instead of thriving at home.

In return, LaMondre is a passionate advocate for the healthcare heroes who care for him along with other people with disabilities. He says: “Caregivers contribute so much to the community of people with disabilities and society as a whole. Effective advocacy is essential to ensure that we create an equitable and sustainable future. We are in this together.”

John Letterman

John Letterman with his home care nurse, North Carolina.

After a severe car accident in 2020, North Carolina resident, John Letterman was left paralyzed from the neck down, unable to walk, talk, or breathe on his own. Unfortunately, as he was preparing to be discharged from the hospital, John’s family were not told they had the option of bringing John home under Private Duty Nursing (PDN) care. Knowing no other option, they placed him in a nursing facility where his health deteriorated.

After a long and stressful separation from his family, John was finally able to return home to receive PDN services in his home. Since returning home with one-on-one nursing care, his condition has improved immensely, no longer requiring a feeding tube, able to talk on his own, and slowly making progress in regaining movement. Thanks to this quality, in-home care, John recently invited Representative Greene into his home (virtually), to show the importance of the care he receives and advocate for better access to care. John said that it’s important that decision-makers understand the impact of home care, espeically if they are the ones passing the budget and determining funding. “We need more people educated about home care so they can be advocates for us too,” he said.

Erin Hamby

Erin is 20 years old and relies on highly skilled nurses to care for her complex medical needs in the comfort of her home. If it weren’t for access to home care, Erin would unfortunately be in a skilled nursing facility, separated from her family and friends and without the personalized care she receives at home. However, thanks to in-home care, she has not let her diagnosis slow her down! With the support and care from her in-home nursing team, Erin has been attending college at Caldwell Early College and most recently, she was accepted at N.C. State, which she will be attending virtually in the fall!

Erin Hamby, North Carolina.

Erin’s father says that home nursing is crucial to Erin’s quality of life: “It allows her to be home and not in a facility. Her nurses have become her friends and they are invaluable to us as a family in managing her medical needs, equipment, and prescriptions. I don’t know how we would manage without these nurses, to be perfectly honest.”

Advocacy Matters!

Despite the fact that many people in government and regulatory positions agree that home health care is a cost-effective, patient-preferred solution, it continues to be prioritized below institutional care. Not investing in home care will decrease the supply of qualified workers, increase turnover, and compromise the quality of home care services. 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 visit our website  in order to learn more about the home care advocacy community and find opportunities to get involved.

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

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.