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!

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

NJ Mom Dana Insley: Support Children like Abi: Raise Wages for Nurses who Care for New Jersey’s Medically Fragile

NJ Blog Takeover: Dana Insley writes about her medically-complex daughter, Abi’s, story—and how NJ’s Private Duty Nursing (PDN) program has helped her overcome her circumstances.

Abi Insley relies on in-home nursing to stay safe and healthy at home

My 8-year-old daughter Abi had the unfortunate circumstance to be born into the wrong family. After a perfectly healthy start with her twin sister, they were saved from their parents’ abuse at two months old: broken, beaten, and shaken within an inch of their lives. After months in the hospital, we were able to bring Abi’s twin sister Gabi home to be adopted, while Abi’s condition continued: She was declared brain dead twice, was dependent on a ventilator to breathe, and we were told she was 100% deaf and blind, and that she would never eat, speak, or breathe on her own.

It took two years of fighting until we were finally able to bring her home with pediatric skilled nursing home care services—a benefit that she receives under New Jersey’s private duty nursing (PDN) program. Without this program, Abi would likely still live in a full-time skilled nursing facility today. It is because of these incredible nurses that Abi has been able to beat her original diagnosis—she is thriving at home alongside her parents, siblings, and nurses, who are like family to us. But every day remains a challenge—Abi needs round-the-clock attention for her medical complexities, and yet we are unable to fill all the nursing shifts that she is prescribed and medically authorized for. When even one shift is missed, that means that my husband and I, who are not medical experts, must act as her nurses. We often miss out on sleep, and on caring for our other children. We consistently struggle to fill five or more shifts every week, and this not only puts Abi’s health in danger, but also puts her at risk to end up back in a facility, or worse.

The problem lies in low state funding rates for the PDN program, which has not been increased in over a decade. In that same time frame, costs of living and wages for nurses in other settings, like hospitals and nursing homes, have steadily risen. Now, nurses are leaving the home care industry to take jobs at facilities where they can earn more and better support their own families. BAYADA and other home care providers struggle to hire and keep enough nurses to meet the demand, and as a result, families like mine suffer. 

Abi has overcome so much, but her abusive past has left her medically-complex for life. Amongst her myriad of health issues, she is legally blind, suffers from a rare life-threatening form of epilepsy, and she requires special medical equipment to eat. This is not a child that we can simply hire a babysitter for. Her high level of care and constant need for monitoring makes it impossible to have any sense of normalcy without capable & consistent nursing support.

Abi’s nurses and their presence in our lives, have impacted our whole family. The all-consuming task of caring for a medically fragile child requires specially-trained, consistent, reliable, skilled nursing care. Her incredible nurses have become an integral part of our home and of her care. Because of her nurses’ attentive care, many health issues that have arisen have been addressed early, rather than mounting into serious ones. Her nurses have been with her through countless sicknesses, surgeries, therapies, and more doctor appointments than we could possibly count. But as home nursing wages have remained stagnant over 10+ years, we can’t blame the nurses that have had to take full-time positions elsewhere. But we are constantly hoping and praying for some relief.

No child deserves to grow up in an institution.  My precious daughter brings many challenges to our home, but it would be heartbreaking to have to put her in a facility for lack of nursing support. I urge the state legislature to consider increasing funding to the PDN program. Competitive wages would bring stability to her home care nursing and allow our family and families like us to stay together and thrive. Please choose to make a difference.

-Dana Insley, Sicklerville

About the NJ Blog Takeover: For the next few weeks, Hearts for Home Care will be featuring posts authored by NJ families affected by the state’s shortage of in-home nurses and home health aides to showcase the need for increased funding for New Jersey’s Private Duty Nursing (PDN) and Personal Care Assistant (PCA) programs. For more information on how you can get involved and let your elected officials know why increased in-home nursing availability is important to you, email advocacy@bayada.com

Michelle Lino-Corona: New Jersey Paraplegic’s Life Put on Hold When In-Home Nursing is not Available

NJ Blog Takeover: Michelle, who is the sister of TBI Victim Brandy Lino-Corona, writes about her sister’s life after becoming severely disabled – and how working with nurses through NJ’s Private Duty Nursing (PDN) program has helped her family define their new normal.

Brandy’s family and caregivers surround her bed in her Absecon, NJ home

For the victims of traumatic brain injuries, access to reliable home health care can be the deciding factor that keeps people either permanently institutionalized, or at home with their loving families. My 17-year-old sister, Brandy, suffered a Traumatic Brain Injury (TBI) from a severe car accident in September of 2018. Since then, the state of New Jersey has authorized 16 hours of specialized nursing care per day for Brandy. This care allows her to stay safe at home, and allows my father, mother, and I to lead proactive, fulfilling lives outside the home. However, Brandy rarely receives all of her authorized hours due to New Jersey’s inequitable Medicaid reimbursement rates for their state-funded Private Duty Nursing (PDN) program.

The severity of Brandy’s injuries left her incapable of moving, eating and even breathing on her own. Nurses that work with her need to be up-to-date on life-saving techniques such as tracheostomy care, respiratory treatments, suctioning, monitoring vital signs, feeding tube care and feedings and administering meditations. Additionally, Brandy must be readjusted every two hours in order to combat her risk of skin breakdown and bedsores. This regularly poses as an obstacle when nurses miss their scheduled shifts as this task requires two people due to her size.

Like so many medically-complicated residents of New Jersey, my sister is at risk of institutionalization and/or hospitalization without the proper nursing care she requires. With potential caregivers persuaded by competitive wages and less physically and mentally taxing employment, eligible patients’ access to qualified healthcare professionals diminishes. New Jersey’s legislators need to consider the plight of their most vulnerable constituents and make the decision to increase Medicaid reimbursement rates. An increase in New Jersey’s Medicaid reimbursement rates would provide a second lease on life for Brandy and those like her, as well as instill a sense of hope for their families whose only desire is to be able to continue to care for their loved one in their own home.

-Michelle Lino, Absecon

About the NJ Blog Takeover: For the next few weeks, Hearts for Home Care will be featuring posts authored by NJ families affected by the state’s shortage of in-home nurses and home health aides to showcase the need for increased funding for New Jersey’s Private Duty Nursing (PDN) and Personal Care Assistant (PCA) programs. For more information on how you can get involved and let your elected officials know why increased in-home nursing availability is important to you, email advocacy@bayada.com

South Carolina Families Struggle Due to Lack of In-Home Nurses

William Walker is pictured with his parents Christina and Aaron. The Walkers are looking for an in-home nurse so that they can finally bring William home.

Just like many new parents across South Carolina and the US, Christina and Aaron Walker are excited to bring their newborn baby boy–William–home from the hospital. But unlike most other new parents, they can’t. That’s because William was born a little more than three months early, with medical complications.

But it’s not the complications themselves that have restricted William to the NICU–but rather, the lack of in-home nurses in the state. Baby William is medically cleared to go home, but the hospital cannot discharge him until an in-home nurse is available to care for him at the Walkers’ Bradley residence.

“The State hasn’t increased funding for the Private Duty Nursing (PDN) program in more than a decade. As a result, agencies that hire and provide in-home nurses to families like the Walkers can’t recruit and retain enough nurses to keep up with the demand,” says BAYADA Government Affairs Director for South Carolina Melissa Allman.

In the past decade, costs of living have gone up tremendously, and so home care agencies are struggling to pay nurses fair wages and stay sustainable as the funding has stagnated. PDN program funding must cover nurses’ wages–plus training, benefits, supervision, and supplies. Rates are so low, that many agencies have even left the state entirely.

Moreover, nurses are attracted to institutions and other settings–such as nursing homes, hospitals, and doctors’ offices–where they can earn more in wages. “The backwards part is that the state can save money and keep families together by keeping medically-complex residents at home and out of institutions. It’s a win-win,” says Melissa.

Christina and Aaron are celebrating every milestone that William reaches in the hospital. At five months, they are more than ready to take their baby boy home. Children deserve to grow up at home among their peers and loved ones. But if the state does not address PDN program funding in a way that ensures agencies can stay sustainable and raise nurses’ wages, then there will be more cases like William’s, where parents must continue to visit the NICU or another facility to see their son or daughter.

Read more about William’s journey here. If you know of a qualified nurse that is interested in caring for William, contact BAYADA Home Health Care at 864-448-5000. If you would like to learn about ways in which you can advocate for better nursing wages in South Carolina or elsewhere, contact Hearts for Home Care at advocacy@bayada.com

Why Home Care Matters – Meet Lacy!

Lacy and her primary caregiver–her grandmother–rely on in-home nurses to keep Lacy safe and comfortable at home
Lacy is a three-year-old diagnosed with cerebral palsy (CP) and chronic respiratory failure living with a tracheostomy and feeding tube. Lacy and her family rely on skilled nurses to provide continuous hands-on care so that she can avoid hospitalization and stay where she belongs – at home.  

“I don’t know what I’d do without my nurses,” says Lacy’s grandmother – her primary caregiver following the murder of her daughter when Lacy was in utero, “They’re my lifeline.”

Although Lacy receives services under the NC’s Private Duty Nursing (PDN) program, she doesn’t get all the coverage for which she qualifies and needs because nurses are difficult to recruit and retain.  Open shifts are common in PDN due to Medicaid’s low reimbursement rate. Lacy’s grandmother had to quit her job in order to take care of her, and nursing coverage is only enough so that she can get sleep and perhaps run an errand.

Hearts for Home Care advocates are serving as a voice for home care clients like Lacy, and for family members who are impacted by the lack of nurses like her grandmother. To encourage state and federal legislators to support higher wages for in-home caregivers and increase vulnerable residents’ access to services, you can make a difference! Learn about ways you can participate in advocacy through our website, or by emailing advocacy@bayada.com today!

Client Spotlight: BAYADA NJ Client Jim Davies Turns Home Visit into an Opportunity to Fight for Nursing Coverage

BAYADA client Jim Davies (center, seated) hosted a home visit with Assemblyman Benson (upper left)

When BAYADA Home Health Care client Jim Davies received a notice in the mail last year that his insurance would be transitioning to another agency, he tried not to panic. After all, the letter stated there would be no change, he would still receive coverage for his home health care nursing and personal care home health aide services.

However, Jim was not convinced. The 66-year-old, who suffered a spinal cord injury as a result of a diving accident 20 years ago, is nearly paralyzed from the neck down. He relies on his nurses for his complex medical needs, which include wound care, range of motion exercises, mechanical transfers to and from bed, medication administration, catheter care, and care to prevent a serious complication called autonomic dysreflexia, which can lead to seizures, stroke, or even death.   

As a former sheriff and local fire commissioner, Jim is used to working collaboratively with others to make things happen. That’s why he immediately called a case manager at the insurance company, who reiterated what was explained in the letter, his home health care coverage would not change.

Coverage denied

Fast forward to the end of the year when Jim received another letter, this time from the new insurance company. Despite written and verbal assurance that his coverage would not change, the new company denied his home health care services, insisting Jim was stable enough and no longer needed nursing care.

Jim reached out to his BAYADA Mercer County Adults (MCA) office Director Meghan Hansen and Clinical Manager Sharon Wheelock who appealed the decision on his behalf, to no avail. That’s when they turned to BAYADA Government Affairs Area Director Louise Lindenmeier, who suggested Jim reach out to New Jersey Assemblyman Daniel Benson, a member of the state Health and Senior Services Committee.

Legislative home visit leads to positive change

“When I called Assemblyman Benson’s office, I wasn’t sure what the response was going to be, but I was pleasantly surprised,” says Jim. “The assemblyman made me feel that as his constituent, my problem was a major concern, and he owned it.”

Assemblyman Benson visited Jim and his wife of 40 years Rosemary at their home to witness, first-hand, the critical role home care nurses play in Jim’s health and well-being. During the visit, Assemblyman Benson also learned about the catastrophic medical consequences of stopping Jim’s nursing care and BAYADA’s unsuccessful efforts to appeal the denial from the insurance company.

Following the visit with Jim, Assemblyman Benson jumped into action. He joined BAYADA Managed Care (MCO) Director Pamela Soni, BAYADA Area Director for Pediatrics Managed Care (MCP) Stephanie Perna, and Louise for a meeting with the NJ Department of Banking and Insurance to discuss Jim’s case. In addition, he personally contacted the insurance company to negotiate the contract, resulting in a reversal of the denial. Thanks to his efforts, the issue was resolved within two weeks.

“It is really important to educate politicians on how insurance changes can impact their constituents,” says Jim, who encourages others in similar situations to reach out to legislators who may be more than willing to help. “Assemblyman Benson should be recognized for his prompt and professional response to my needs.”

Assemblyman Benson considered it a privilege to play a role in helping Jim. “It was my honor to work with Mr. Davies to ensure that he received the care he needs and deserves,” he says. “As legislators, it is our sworn duty to represent our constituents, and that means lending our assistance whenever possible, whether by simply cutting through red tape or elevating a situation to a higher level so that it is promptly addressed. I would encourage those in need to reach out to their elected representatives to learn what they can do for them.”

Want to Help Make a Difference: Register for Hearts for Home Care

Whether you can give a minute, an hour, or a day, there are many ways to get involved in advocacy. It can be as simple as sending a pre-written email to your local legislators, hosting a legislator in your home, or attending an event at a legislator’s office or your state capitol.To learn more, consider becoming a “Heart for Home Care” advocate. It only takes five minutes to register at heartsforhomecare.com. You’ll receive email updates about current issues and opportunities to make your voice heart.

Thank You for Keeping Me Home: A Message from an Advocate

North Carolina advocate Ari A. during a trip to Washington, D.C.

We often think of advocacy as sharing our stories, our challenges, and asking for legislative support in addressing those challenges. But advocacy is much more multi-faceted: It’s about building relationships by cultivating legislative connections so that they become home care supporters for life, and it’s certainly about saying Thank You when the support pays off by resulting in a law or policy that is beneficial to the individual and to the home care community at-large.

Below, find a Thank You note written by North Carolina home care recipient and Hearts for Home Care advocate Ari A. Ari has been able to thrive and stay independent at home because of the skilled nursing services he receives under North Carolina’s Medicaid program. Recently, he wrote to Medicaid staff to thank them for resolving a critical issue that enabled him to continue these services. Medicaid staff are committed to improving health and well-being of North Carolinians, and their transactions are often behind the scenes and receive little recognition. Hearts for Home Care applauds Medicaid staff across the country for their commitment to helping individuals stay at home, and we applaud Ari for his sincere thankfulness of their work.

To All I Work with in NC DHHS and Medicaid,

Some of you I’ve known for years and some a short time. Through it all, the one and most important factor that has been consistent has been the capacity to care. Time and time again over the years I have had to get battle ready in order to keep my life-saving services. However, instead having to scale cold-hard hearts, impenetrable like a fortress, you invited me into your hearts. You consistently agreed to provide for my intensive care in my home instead of a medical facility; which essentially would have been leaving me out in the cold to die. Instead of fighting me you have been my allies, always being there for me when I needed you the most.

These truths became ever more apparent a couple weeks ago. For the past two years, my mom and I have been getting things ready to transfer my medications, physical therapy, and supplies to Medicare without de-stabilizing my PDN services under Medicaid. It has been a mind numbing, complicated process. We have been hyper-vigilant not to miss any details that could easily be overlooked. We recently turned in sensitive paperwork to the Department of Social Services (DSS) well before the deadline. On November 30 we spoke with the Director of Policy and Procedures for Medicaid Sandy Terrell about how to safeguard my PDN even more during the transition. Ms. Terrell told Saunja Wilson from PDN to double check if everything was in order by the end of the month. Thank God, Ms. Wilson decided to check right away. The sensitive paperwork we emailed to DSS was present, but hadn’t been pulled up yet even though my caseworker had the paperwork in her email. One of the Supervisors at DSS had also confirmed that we had it turned in. We were told email or fax was equally acceptable for documentation.

The breakdown was that this particular caseworker did not use her email for business and preferred to have documents faxed to her. My caseworker tried to alleviate a little bit of pressure off my mom and I by telling us to ignore the ‘Termination of Medicaid Services’ notice in the mail. Yet, the absolute terror that rose up from the pits of our stomachs when we received the notice was totally indescribable! Despite the paperwork being directly faxed to my caseworker, we still waited for the approval. Thankfully over a week later, the situation was taken over by one of the Supervisors at DSS. She rose to the occasion and kindly brought the matter to a close so that my mom and I could peacefully go on with our lives.

Frighteningly, the bottom line is that I am not exaggerating when I say my life would have been ‘Terminated’ if Saunja Wilson from PDN hadn’t been ‘quick on the draw’ to find the error. If Ms. Wilson had waited to check just two or three days later, I wouldn’t have been able to disregard the Termination notice and my life would have been ruined! I say again, Thank God for my champions in NC government. You always rises up out of the mist to do a heroic save! This is what the rest of America could be and should be as far as healthcare policy.

Frighteningly, the bottom line is that I am not exaggerating when I say my life would have been ‘Terminated’ if Saunja Wilson from PDN hadn’t been ‘quick on the draw’ to find the error. If Ms. Wilson had waited to check just two or three days later, I wouldn’t have been able to disregard the Termination notice and my life would have been ruined! I say again, Thank God for my champions in NC government. You always rises up out of the mist to do a heroic save! This is what the rest of America could be and should be as far as healthcare policy.

All of you keep doing a spectacular job and always keep your focus on the people you serve instead of the numbers, especially as NC transitions to Managed Care. If you ever need my help just let me know anytime!

Sincerely,

Ari A. Charlotte, NC

Hearts for Home Care Kicks Off 2019 with Two Heartfelt Visits with New Jersey Clients

Last week, Hearts for Home Care members and BAYADA employees Dave Totaro, Tara Montague, and Alisa Fox traveled to northern New Jersey to meet two home care clients and their caregivers to learn more about how home care has impacted their lives and how they advocate on behalf of themselves and their loved ones.

Meeting Addy and Gloria


Photo: DOV client Addy R. and her HHA Gloria have an unbreakable bond

First, the team stopped by a BAYADA service office in Dover, NJ to meet the staff and learn about the struggles the office regularly faces in recruiting and retaining home health aides. Per staff member Helena Anton, challenges lie primarily within staunch competition in the area and finding the high-quality and compassionate caregivers that “you can tell are put on this earth to care for others,” as Helena puts it.

“Smaller home health care companies can usually pay the caregiver more in wages because we put that money into benefits, training, and supplies. But the real problem is that Medicaid reimbursement rates are so low that these caregivers—no matter what company they work for—aren’t making enough. That’s why we need to advocate to make sure the state sees how low wages are impacting so many New Jerseyans that are able to live and their communities and thrive with home care,” added Helena.

After the discussion, the Hearts for Home Care advocates met home care client Addy and her aide Gloria. The crowd was nearly brought to tears by Addy’s story regarding the challenges she has been able to overcome with her “teammate”—which is what she calls Gloria.

“I was extremely touched by Addy’s and Gloria’s relationship. Not only is it clear how much Gloria has impacted Addy’s daily life and her sense of self-worth, but the way that Gloria talks about Addy’s influence on her own life is incredible. You can tell that Gloria was truly put on this earth to be the nurturing, compassionate caregiver that she is,” said Tara Montague.

Recently, Addy and Gloria visited Senator Steve Oroho to share their story and to advocate for better state home care policies. “Helping people is important. And it’s important that those who help others get the help that they need too,” Addy told the group. Addy recommitted to continuing to advocate for herself and for others who are impacted by home health care. “I want to share my message with legislators. It’s my way of giving back,” she said.

Lili and Emma Welcome Advocacy into Their Home


Photo: Lili and her nurse Barbara share a high five

Next, Dave, Tara, and Alisa traveled to Morristown to visit home care client Liliana “Lili” and her mother Emma in their home. As a single mom, Emma relies on home nursing so that she can keep her full-time job and keep Lili at home. She told us that her service office team works hard to ensure that every one of Lili’s shifts are covered. She also shared about times when that coverage wasn’t so steady: “Our routine and our comfort level is only as good as today…When Lili’s main nurse Liz retired, we had a few months where we didn’t know what tomorrow would bring.”

Lili benefits from New Jersey’s private duty nursing (PDN) program, which allows for children and adults with skilled care needs to live at home. Without this program, it is unlikely that Lili would have been able to grow up with her mom and graduate from school as she did. The PDN program’s rates need to be raised in order to better attract more nurses to home care, as most can currently make a higher wage delivering skilled care in a hospital or nursing home. One of Hearts for Home Care’s major advocacy goals for 2019 is to educate legislators on the need for a rate increase and to secure one on behalf of all New Jersey home care clients, families, and nurses.

Like Addy, Emma is committed to ongoing advocacy to ensure that nurses see home care as an attractive employment option, so that other families can receive the home care that they need too. In recent years, Emma has hosted state elected officials in her home. “Seeing our daily routine and how important it is for Lili to have a nurse at home is the most impactful way for an assemblyman or senator to understand home care,” said Emma. “As a mother of someone who is able to stay home due to in-home nursing care, I see it as my duty to advocate…Not just for Lili, but for those in the state who are struggling to get the nursing they need.”

“It’s our clients’ and families’ voices that make the biggest impact on our state and federal elected officials’ decisions about home care. Because of advocates like Addy and Emma, legislators better understand the impact home care has on their communities,” said advocate Dave Totaro, who also serves as BAYADA’s chief government affairs officer.

There are plenty of ways to advocate, even from home! To find out ways that you can make an impact, contact us at advocacy@bayada.com. Together, we can share our voices to make 2019 the best year for home care yet.

South Carolina Representative Garry Smith Visits Local Family to Learn How Home Care Impacts his Constituents

Rep. Garry Smith (left) visits home health care client Emma (held), mom Gina (right) and their in-home BAYDA nurse Danielle (second from left).
Rep. Garry Smith (left) visits home health care client Emma (held), mom Gina (right) and their in-home BAYDA nurse Danielle (second from left).

 

South Carolina State Representative Garry Smith (R, District 27) visited a local family in his district to learn how his constituents and many South Carolinian families rely on home care to keep their loved ones together at home and out of more expensive settings. Rep. Smith is one of the many legislators that Hearts for Home Care advocates bring into home care clients’ homes to show them how federal, state, and local policies affect home care recipients and their families.

During his visit, Rep. Smith met 21-month old BAYADA Home Health Care client Emma Ferguson, Emma’s mother Gina, and Emma’s in-home BAYADA Nurse Danielle Rian. Emma was born with a Chronic Lung Disease of Prematurity, which causes Emma to experience severe breathing problems, pain, and other symptoms. At her young age, Emma has already had several surgeries and currently still requires use of a Gastrostomy-Jejunostomy (G-J) Tube to assist with her feedings and medication management throughout the day. At birth, state Medicaid authorized Emma to receive private duty nursing (PDN) services in her home so that Emma can remain safely and comfortably at home with her mother.

In March, Emma’s PDN services were terminated when Medicaid determined that her skill level no longer qualified her to receive care in her home. From March until May, Emma attended a local day care facility for children with complex needs so that her mother could continue to work. During this time, Emma was hospitalized on several occasions and required ventilator support due to respiratory illness. In May 2018, Emma’s mother Gina reapplied for PDN services, and Emma was able to start receiving care at home again. Emma currently receives 32 hours of PDN services in her home, and since the reauthorization, she has not been readmitted to the hospital.

Emma’s mother Gina stated, “I’m grateful Rep. Smith was able to visit our home to see how Emma and other medically-complex children can grow up and thrive with in-home nursing. These kids deserve some normalcy in their lives, and I have seen first-hand how much better she does when she can be with me at home rather than in an institution. She only receives 32 hours a week, and this allows her to receive the care she needs in the best place–her home–and allows me to be able to work to support my family.”

After the home visit, Rep. Smith said, “visiting sweet Emma and her family has opened my eyes to what home care means to my constituents and to the many South Carolinians who depend on Medicaid home care to stay with their families and out of higher-cost settings. I look forward to exploring ways we can help keep families together while at the same time effectively managing the state’s budget.”

“One-on-one nursing services have allowed Emma to remain safely at home under the Medically Fragile Children’s Medicaid Nursing Waiver. This program is an alternative to nursing home placement at a lower cost to the state,” said Melissa Allman, Hearts for Home Care advocate and Director of Government Affairs for BAYADA. “In-home nursing care helps minimize deterioration and can prevent costly hospitalizations as staff can address subtle changes in the medical condition before it becomes serious. I hope that more legislators continue to learn about how cost-effective these services are to the state, and how valuable they are in keeping South Carolinian families together.”

Home visits like this one really give elected officials a better understanding of how their decisions on key issues like Medicaid impact real people who are seeking to remain safely at home with their families. To find out ways in which you can participate in a home visit with a local legislator, or other ways you can advocate, email advocacy@bayada.com.