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

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.

Help us access the nursing care we need: Indiana Mom Annie Shares Her Voice with RTV6, and wih Lawmakers

Indiana families like the Goellers are struggling to access the in-home nursing care they need to keep their medically-complex children safe at home

Indiana moms are coming out to share their message with State decisionmakers: “Help us access the nursing care we need!” Recently, RTV6—Indianapolis’s ABC affiliate—aired coverage of mom Annie and her daughter Emma. Emma, and more than 14,000 like her across the state, rely on skilled nursing to live safely at home, but often struggle to access it. The State has until June 30 to make a decision to help alleviate families’ struggles by increasing funding for state programs that pay for in-home nursing coverage.

The issue lies in State funding for programs that allow families like the Goellers to access the skilled in-home nursing they need. Because nurses can make more money in hospitals, rehab centers, and other facilities, nurses are more attracted to those settings rather than home care. The constant turnover creates a revolving door of nurses. In the past six years, Emma, who has cerebral palsy, has had dozens of different nurses. “I would say probably at least 20 or 25,” said mom Annie.

Such turnover means that Emma doesn’t see reliable, consistent nursing coverage, which puts her at risk. For many families, this also means that shifts are missed and parents must bear the burden of providing care. Lack of sleep, calling out of work, and being unable to care for other family members are all unintended consequences that come from the lack of skilled in-home nurses.

No child deserves to grow up in a hospital or facility, and no parent deserves to be an untrained nurse for their child. When we unite our voices in advocacy, we can make sure that our message is heard and that decision-makers and key influencers are aware of the issues that they have the power to make changes on. Contact advocacy@bayada.com to learn about how you can share your story and make an impact today.

North Carolina Legislative Day 2019 Photo Gallery

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

Advocates in Action: Dimpal Patel Inspires NC Ambassadors at Ambassador Symposium

Client Dimpal P. inspires Ambassadors during North Carolina’s Ambassador Symposium

On March 28, our annual North Carolina Hearts for Home Care Ambassador Symposium took place, where we provided tools and resources to our volunteer Ambassadors. The training focused on a variety of topics, including leading a legislative meeting and building relationships with lawmakers. 

In addition to special guests former Representative Bill Brawley, Senior Healthcare Campaign Director of MomsRising Felicia Burnett, Association for Home & Hospice Care’s VP of Government Affairs Tracy Colvard, and Staff Attorney with Charlotte Center for Legal Advocacy Louise Pocock, the shining star of the Symposium was client Dimpal, who inspired all of our Ambassadors with her story of her journey into advocacy.

Beyond detailing the specific challenges she and her family face as a result of low state Medicaid reimbursement rates, Dimpal also described the ways in which home care and her nurses have changed her life and granted her independence:

“Without my nurses, I wouldn’t have been able to go to college and to live a full life. Without them, I’d likely be stuck in a hospital or a nursing home,” said Dimpal.  

It was this gratitude for her nurses that propelled Dimpal to share her story and to advocate for others who rely on the state’s Private Duty Nursing (PDN) program to survive.

To hear more about Dimpal and the importance of advocacy, you can watch her full speech here. You can also read about her nursing care in the Gaston Gazette after a reporter came to her house to learn more about how her nurses impact her everyday life.

Special thanks to our Hearts for Home Care Ambassadors for volunteering their time and talents advocating for our staff and clients!

To learn about ways you can get involved in advocacy, email advocacy@bayada.com today