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

Patient Recognition Week: February 1-7

In honor of Patient Recognition Week, Hearts for Home Care sends a warm and heartfelt thank you to the many patients and families that advocate every day!

Hearts for Home Care cannot be effective in changing states’ policies and program funding mechanisms without your stories. When those who are affected by home care—clients, their families, and their caregivers—share unique and personal stories, it creates real change. These stories illustrate to legislators how impactful home care is to their constituents, and why it is important that they create new laws and amend existing ones to maximize access to care for residents who need it most.

Advocating for yourself or for a loved one is rewarding. Sharing your voice can mean the difference between a legislator being unaware of home care’s impact, to their proactive support of home care. In honor of Patient Recognition Week, below are several real life examples of clients in advocacy action. Home care patients and families make all the difference. Thank you for all you do!

Delaware mom Kateri Morton has advocated for her son Joey in many ways, from being featured on local news station WMDT (47 ABC) to share how low state Medicaid rates have affected her ability to get all of Joey’s skilled nursing hours covered—to organizing a group of active moms to testify at upcoming state hearings on the issue! Not only have legislators heard her voice loud and clear, but now other DE moms have heard her and thereby gained the confidence needed to share their stories too.

Kateri’s advocacy on behalf of her son Joey has enabled state decision makers to hear about the importance of in-home nursing through many mediums—including print and broadcast media.

Durham, North Carolina’s Mr. Mendenhall is a 90-year-old armed service Veteran with Dementia. Due to his diagnosis and the accompanying physical limitations, he needs constant supervision and support—including assistance with everyday activities, such as dressing, eating, bathing, toileting, and moving around. Mr. Mendenhall lives at home with his wife, Margarite, of more than 50 years. She does her best to take care of her husband, despite her own medical challenges and limitations. While they both are frail, they are happy to be at home and together. They are able to stay at home through the home health aide services that he receives from his home health aide, Kashina, who comes in two hours per day to care for Mr. Mendenhall. Her caregiving services enables Mr. Mendenhall to remain as mobile as possible, as well as remain in his community.

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

While you’d think that their advocacy work is limited, the couple recently participated in a home visit in which NC Rep. Zack Hawkins. This enabled Rep. Hawkins to see firsthand how home health aides help keep constituents costly and potentially infectious facilities such as hospitals and nursing homes. After Rep. Hawkins’s visit, he helped the family connect with the VA to address challenges they were facing. Rep. Hawkins said, “As a lawmaker, it is important we support seniors. To ensure they can live a full life at home. Care at home is an important option, less expensive, and where people want to be.”

LaToya Martin is a super-mom who fearlessly advocates for her son Massiah. When she wrote an opinion piece for the Delaware Post, her powerful message led to many state legislators learning about how home care affects real people across the state. That message resonated not only with lawmakers, but also with moms and home care advocates from all parts of the US. Scary Mommy—one of the largest online resources for moms—even reshared her piece to the hundreds of thousands of readers that regularly access their site!

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

Mark Steidl of Pittsburgh, PA doesn’t let communication challenges stop him from sharing his voice. Diagnosed with Cerebral Palsy, he uses a Dynavox to communicate the importance of home care and the impact of his home health aides with his legislators! Mark and his mother travel to the state capitol in Harrisburg, and to Washington, D.C. at least once a year to take part in Hearts for Home Care lobby days—days in which dozens of advocates gather to make meetings with legislators that will be voting on home care-specific legislation.

In a conversation with Mark about his advocacy work, he said, “If I had been born in 1965 instead of 1995, my parents might have been told to send me to an institution instead of raising me at home with all the support I need. Times have really changed. Advocacy and new ways of thinking have created those changes. But much more needs to be done and much more can be done. We have to keep advocating for the changes and the opportunities we want.”

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

New Jersey mom Dana Insley steps up to the plate for any opportunity to advocate on behalf of her beloved daughter, Abi. After 2+ years of fighting, Dana and her husband adopted Abi, who needs skilled home nursing to be able to live a safe, healthy life alongside her siblings and loved ones at home. When she isn’t taking care of her family, Dana thinks of many ways to advocate. She has testified at many state hearings for increased home care funding, regularly writes opinion pieces to share with news sources and legislators, and always makes time to share her family’s home care experience with the public. Abi didn’t only get a second chance at life, but she also got a mom whose voice advocates on behalf of all New Jersey children and families with special needs.

This is a mere glimpse into the wide world of patient advocacy. Thank you to the many, many home care clients and families that take the time to advocate in a variety of ways. From a brief video meeting with a legislator, to a home visit with your medically-fragile loved one, to writing to your local paper, sharing your story helps lawmakers see the importance of in-home care, and empowers you to act as a voice for the many who are unable to advocate for themselves. We recognize you and appreciate you. To get involved in advocacy in your community, contact advocacy@bayada.com today!

As Drawbacks of Nursing Homes are Recognized, It’s Time to Recognize Home Care as the Future

Medicaid Home Based Care
Home health aides help keep many families together at home.

Whether you are a professional or family caregiver, home care recipient, or otherwise, you know why home care is safer, more patient-preferred, and less costly than institutional care. Home care provides vulnerable seniors and adults with disabilities with one-on-one care that enables them to stay safe and independent in their own communities. While its benefits—and the inherent drawbacks of institutional care—are evident to us, home care is still not widely recognized as a long-term solution. This is because nursing home care is still often seen as the “default” option for those that need consistent care, particularly under Medicaid.

But tables are beginning to turn: As the COVID-19 pandemic has shed light on the dangers of nursing home care. With recent reports citing that a staggering 40% of COVID-related deaths have occurred in nursing homes, people are more widely recognizing home care as the long-term care setting of the future.

Home care saves state Medicaid programs money and helps vulnerable Americans stay out of costlier and more infectious settings like hospitals and rehab facilities. It enables more than 8.3 million Americans to remain healthy at home, thanks to the 3.2 million compassionate and dedicated frontline direct care workers, including home health aides and personal care assistants, that keep these at-risk populations safe, independent, and out of riskier institutional settings.

In a post-COVID world, home will become recognized much more widely as the care setting of the future. With the US’s aging population growing quickly, and with families’ recently-discovered reservations about placing their loved ones in a long-term care facility, it is important that governments across the country take steps to make sure that the home care industry grows proportionately along with the demand for it. This includes: Increasing state and federal Medicaid rates for home care services so that providers can raise wages and allow more caregivers to be recruited to the home care workforce; Rethinking outdated laws and regulations that allow vulnerable populations to more readily access nursing home care; and instituting built-in protections for Medicaid-based agencies, such as relief funding for extraneous costs that occur during an emergency like COVID-19.

A “Home First” mentality would allow for individuals to stay safe at home and away from group settings that encourage virus spread. Now more than ever, the potential dangers of institutional care are becoming a frightening reality and we as a nation need to consider the future of healthcare as our population continues to age, and as more medically-fragile and disabled individuals are able to live independently. By updating laws to prioritize home care, we have the opportunity to create a meaningful, cost-effective and common-sense change to healthcare for the post-COVID future.

If you are ready to advocate for home health care, please contact us at advocacy@bayada.com.

Recognition and Fair Compensation for Frontline Home Care Workers—During COVID and Beyond

By: Dave Totaro, Chairman of the Partnership for Medicaid Home-based Care

Below, please find an opinion piece authored by Dave Totaro—Chairman of the Partnership for Medicaid Home-based Care (PMHC) and BAYADA Home Health Care’s Chief Government Affairs Officer. This was originally published in the Scranton Times-Tribune on May 10, 2020.

Our nation’s frontline healthcare workers have been recognized during the COVID-19 pandemic, arguably more than ever before—and rightfully so. These essential workers put their health and safety on the line in order to make sure that the most vulnerable populations are taken care of. But these workers—particularly the caregivers that keep these individuals at home and out of riskier settings like nursing homes—deserve more than cheers, front lawn signs, and complimentary cups of coffee. It is time that our federal and state governments fairly compensate these brave and compassionate workers for the sacrifices that they are making during this critical time through Hazard Pay—that is, temporary increases in hourly wages for workers who are risking the most yet earning the least.

Congress has passed three stimulus bills so far, and have done so quickly and commendably with an eye toward helping the economy and the unemployed. But these packages have not yet focused on compensation for those who are working—the essential employees that risk their safety to care for the many that can’t help themselves. And while many healthcare professionals within hospitals and institutions have been impacted, the federal government has not yet prioritized the caregivers that keep people healthy at home.

Congress is currently working on the fourth (and likely final) stimulus bill. This presents a vital opportunity to increase Hazard Pay for healthcare workers who put their safety on the line every day. While the first three stimulus packages have increased emergency funding for states, only a handful of states have used those funds to increase pay for frontline healthcare workers. Currently, there are three potential proposals that would serve to increase pay for these workers across the US—either of which would reward home care workers and incentivize many to begin or continue their career in a field that is much-needed during this time.

Home care workers—particularly home health aides—are largely females of color who are making slightly above minimum wage. Yet they are some of the most essential workers—caring for those who are unable to care for themselves. And not only is their job physically and emotionally tolling, but the prioritization of hospital care has made it increasingly harder for home care agencies to access personal protective equipment, such as masks, gloves, hand sanitizer, and gowns, for these workers. And, to top it all off, we are regarding them as heroes without considering fair compensation for their commitment and sacrifice.

Now more than ever, the potential dangers that go hand-in-hand with nursing home living are becoming a frightening reality and we as a nation need to consider the future of healthcare as our population continues to age. Nearly 20% of COVID-related deaths have occurred in nursing homes. Not only is in-home care the best way to ensure that the most at-risk populations—seniors and the medically fragile—stay as isolated as possible rather than be grouped in together, it also ensures that they are in the most cost-effective setting for their families and for the state and federal governments themselves.

COVID-19 has hit many Americans hard, and few are exempt from at least some negative consequences as a result. But it is clear that there are some who are risking more than others, and who are sacrificing their personal safety in order to keep others healthy and independent at home… both in times of crisis and times of normalcy. So while the recognition and support of frontline workers is certainly appreciated, it does little to truly show home care workers how valuable they are. Through the development of the fourth stimulus package, the federal government has the opportunity to meaningfully show at-home caregivers what they mean to America—both now and in the future. Home health care has been making headlines in recent media coverage.

In order to join those who are advocating for better home health care funding and policies on behalf of beneficiaries, their families, and frontline workers, contact us at advocacy@bayada.com

NJ PCA Beneficiary Keith Braswell: New Jersey Paraplegic’s Life Put on Hold When Home Health Aide is not Available

Many New Jersey seniors and adults with disabilities are able to stay safe and independent at home due to assistance from Home Health Aides (HHAs) under the state’s Personal Care Assistant (PCA) program

NJ Blog Takeover: Paraplegic Keith Braswell writes about his life with a severe disability – and how working with his aide through NJ’s Personal Care Assistant (PCA) program has helped him to live life on his own terms.

My name is Keith Braswell and a car accident in 2008 forced my entire way of life to change. I was left paraplegic and since then, I have been able to remain a vital, active member of my community thanks to the help of my home health aide, Quisela. As a 46-year-old adult, it can be tough for me to rely on someone else for everything from getting out of bed, bathing, eating laundry etc., but Quisela does everything she can to make sure that I feel safe and comfortable.

While Quisela is very reliable, filling all of my state-approved 40 hours of care without a day off, her choice to stay working as a home health aide is becoming more unrealistic by the day. This is because New Jersey’s Medicaid reimbursement rates under the Personal Care Assistant (PCA) program—the one that I and thousands of others like me rely on—don’t allow for aides to make a fairwage for the compassionate work they do. For example, in Newton, aides make minimum wage to slightly above minimum wage, and can often secure jobs with less required training, stress, and physical requirements at places like Walmart, Home Depot or Dollar General—all of which are located within the municipality or along route 206. This is especially true since NJ raised minimum wage in the beginning of year, while the Medicaid reimbursement rate remained stagnant.

I am beyond appreciative of how important Quisela’s vigilant and caring work is to my life, and I frequently go out of my way to make sure she is paid as much as possible, like booking my recent surgery around her vacation time to make sure that she wouldn’t lose any hourly pay. If I were to ever lose my aide, I would likely be forced into an institution which means losing what remains of my independence along with the quality of one-on-one care that I receive at home.

I humbly ask that the state legislature consider an increase in Medicaid reimbursement rates, so that individuals like myself can continue to choose to live independently at home. Many choices were taken away from me because of my injury, and losing this choice as well would be heartbreaking for myself and for thousands like myself across the state of New Jersey.

-Keith Braswell, Newton

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

North Carolina State Representative Zack Hawkins Experiences a Day in the Life of a Durham Veteran Receiving Support at Home

NC state representative Zack Hawkins (left) meets home care client Mr. Mendenhall (seated) and his wife

State Representative Zack Hawkins, an active supporter of home health care, recently visited with a Durham family who rely on services to stay safe at home.

Representative Hawkins visited with a constituent, Mr. Aubrey Mendenhall, an armed service Veteran with a wonderful sense of humor. As a young US Sargent in Germany, he saw the prettiest lady working at the base general PX store…and spent the next thirty days asking her out. Margarete finally agreed and they’ve been together for more than 65 years.

Some five years ago, Mr. Mendenhall was diagnosed with Dementia – a condition characterized by a decline in memory, language, problem-solving and other thinking skills that affect a person’s ability to perform everyday activities. His dementia makes it difficult for him to manage without constant supervision and puts him at a high risk of falling. A certified nursing assistant (CNA) comes to help him bathe, toilet, and dress. “The aide’s goal is to help Mr. Mendenhall stay as independent as possible. Make sure he doesn’t fall or get an infection that can put him in the hospital,” said BAYADA Home Health Care Clinical Manager Megan Russell, RN.  

The Department of Veterans Affairs covers 11 hours of aide services per week. Outside those 11 hours, Margarete is his constant companion and support. She uses the 1 ½ – 2 hour breaks she receives each day to perform other necessary tasks such as running to the grocery store, to a doctor’s appointment, or to simply have an uninterrupted cup of tea. It is her only break from caregiving. At 90 years old, dealing with her own health issues, and after five years of serving as Mr. Mendenhall’s primary caregiver, Margarete finds herself exhausted!

With tears in her eyes, their only daughter, Kathy, commented that she is considering quitting her job as a nurse and move in with her parents so that she can better manage their care. While carrying for a loved one with a chronic illness can be profoundly meaningful, it can also be overwhelming as the physical, emotional, financial tolls compound on the family caregivers.  

“Having personally been touched with seeing my mother and aunt provide care to my grandmother, I understand how important it is to be able to take care of one’s family,” said Representative Hawkins. “And as a lawmaker, we need to support seniors and their families. To ensure they can live a full life at home. Care at home is an important option, less expensive, and where people want to be.” 

According to AARP’s online article, Caregiver Burnout, “over time, that physical and psychological wear and tear can lead to caregiver burnout – a condition of feeling exhausted, listless and unable to cope.”  Russell has reached out to the VA case manager to explore respite care which would allow for the family some much needed breaks. The Mendenhalls want to stay together, however, they need some additional support to effectively care for themselves while maintaining their responsibility to their loved one.

“In-home care programs provide one-on-one care by licensed nurses or certified nursing assistants under the care of a physician,” said BAYADA Area Director Lee Dobson.  “They allow families to stay together and be safe at home. It really gives the state more for less and is clearly part of the health care budget solution.”

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.

GAO SC: Much-Needed PDN Rate Increase Helps Keep SC Medicaid Skilled Nursing Offices Open!

GAO Director Melissa Allman and SC office employees, field employees, and clients & families made all the difference in ensuring that medically-fragile residents could continue to access home care

Over the past several years, home care offices across South Carolina have struggled to stay sustainable due to low state Medicaid reimbursement rates for in-home nursing services. As more and more providers shut their doors, GAO and our advocates continued to fight towards a solution so that South Carolina’s most vulnerable residents could continue to access the skilled care they needed to stay at home.

After aggressive advocacy and a public affairs push throughout 2019, our concerted efforts are beginning to pay off! After more than a decade without a nursing increase, the state recommended a 15% increase, effective July 1, 2020. After further advocacy efforts focused on the urgent need for an immediate increase, including articles profiling affected families in the media, the SC Department of Health & Human Services (DHHS) issued the initial 5% increase be effective January 1, 2020. This 5% increase will generate nearly $230,000 in additional annual revenue.

BREAKING: DHHS is committed to including the remaining 10% to be effective July 1, 2020. If the provision is passed into law as planned, then PDN services will see a total 15% increase from 2019 levels (5% increase effective January 1, 2020, and an additional 10% targeted for July 1, 2020), resulting in nearly $690,000 in additional annual revenue.

Further increases are needed to ensure access to care for all vulnerable South Carolinians. These major steps forward would not have been possible without sharing our collective voices to showcase the importance of care in the home care and the need to regularly maintained viable reimbursement rates.

Thank you to all of our South Carolina offices, leadership, clients, and families that shared their stories and advocated for this important increase!