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’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!
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.
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 firstname.lastname@example.org.
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 email@example.com
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 firstname.lastname@example.org today!
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.
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.
home visit leads to positive change
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.”
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.
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
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.
For most people, turning 21 is a milestone to celebrate. But
the State of Rhode Island is putting undue pressure on medically complex Rhode
Islanders who are turning 21. For those who receive home care services under Medicaid,
such as the Katie Beckett waiver, their medical coverage changes on their 21st
birthday, which affects who pays for their services, the types of services
available to them, and their state-authorized hours and funding levels. Without
proper planning and communication,
these changes can result in uncertainly of continuity of care and access to
home care services.
For young adults like Zach, Corinna, Brandon, and their families, turning 21 has been a source of significant stress and uncertainty rather than the celebration it deserves to be. Upon “aging out” of Medicaid, they have received word from the state that their care would be changing without much warning. Parents of medically complex individuals tend to be lifelong advocates on behalf of their children, and so all three have been able to retain their services on a month-to-month basis. “This is just a band-aid that covers the issue,” says BAYADA Home Health Care’s Government Affairs Director Ashley Sadlier. “Each month, they don’t know whether that band-aid will stay on or get ripped off. Everyone deserves to stay at home if it’s their wish to do so, and it’s arbitrary that a birthday is basically a penalization in Rhode Island.”
The interesting fact is that the State has already created a policy stating that home care children and their families are to be educated on their options by the age of 17. But Rhode Island has not upheld its end of the bargain: Families find that they receive little to no communication from the State, and that when they reach out to find out their children’s care options, the State is slow to respond and typically unable to provide proactive guidance to help families navigate this change . “Modern medicine and advances in home care have allowed for many children to live past the age of 21. That should be a reason to celebrate, not a reason to cut an individual’s services off suddenly,” says Corinna’s mother Michelle. “Home care saves the state money, and it keeps families together. Why would you put a child in danger when it’s clear that home care has enabled them to live their best life?”
Families, home care providers, and and other organizations across the state are currently working with the State to identify a solution. Without home care, clients stand a greater risk of infection, hospitalization, or even a permanent move to a skilled nursing facility. Parents know that a child doesn’t stop being your child when they reach adulthood, but it’s time that Rhode Island recognize this as well.
The facts are clear: Home care is less expensive than
hospital or other institutional care. Plus, it enables medically complex
children and adults to remain at home amongst their loved ones. But because the
State of South Carolina has not increased reimbursement rates for skilled
nursing home care services since 2008, families are finding it increasingly
harder to access the skilled, high quality care that they need to stay as
independent as possible in their communities.
State funding for home care has not been increased in more
than a decade. At the same time, hospitals and other facilities have been
steadily able to increase wages. Even more so, nurses can make more in home
care in surrounding states. Now, home care providers find that they can compete
for less than a quarter of all the nurses available in South Carolina. When
agencies face such recruitment and retention struggles, home care recipients and
their families suffer.
When there are less home care nurses available, families
find that they experience missed shifts, which can not only create undue stress
and chaos as loved ones must miss work, lose out on sleep, and forego other necessary
activities—but it also puts the client in danger. For those who need skilled
nursing care, missed shifts can mean dangerous consequences, including trips to
the ER and unnecessary hospitalizations.
Even more so, many major home care providers have already
left South Carolina because of the low funding for home care. Stagnant rates
that are more than a decade old make keeping their doors open unsustainable. As
more and more agencies leave the state, the harder it is for families to access
care. Simply put, if the State does not take action to increase funding for
home care, South Carolina’s most medically complex and vulnerable families will
have few options for care.
South Carolina’s concerned families are making their voices
heard: They are reaching out to their legislators and media to share their
message: Increase funding for home health care so that families can access the
high quality, reliable care that they need to be where they want to be: At
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
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 email@example.com to
learn about how you can share your story and make an impact today.
Indira is at Jessie’s home every morning at 5:00 without fail. After taking on Jessie’s case and learning that she spent most of her time in bed, it became Indira’s mission to consistently challenge her to get out of bed and get active. Now, every morning before dawn, Jessie starts her morning with a smile, anxiously waiting for Indira to arrive.
While helping Jessie, who is 31 and diagnosed with cerebral palsy, with her activities of daily living, Indira also incorporates games, crafts, dancing, and singing. After a few short months with her beloved caregiver, Jessie now has a newfound confidence in her physical abilities and communication and language skills. Indira has quickly ingrained herself as part of Jessie’s family, whose loved ones call Indira “a Godsend.”
CHHA Michele has been with her client Marie since January of 2017, but you would think they have known each other forever. They share a special bond, and Marie even says that Michele is “like a daughter” to her. Marie lives alone, and if not for Michele’s visits, would be lonely and potential in danger. In addition to the personal care services that Michele provides to keep Marie safe and healthy, you see their bond shine when Michele frequently makes puzzles and quizzes to stimulate Marie’s mind—or as they like to call it, “using our noodles.”
Marie says that without Michele, she would not be fully able to take care of herself. But As soon as Marie arrives at Marie’s door, the time flies as Marie keeps her on her toes—both figuratively and literally. In addition to regularly stimulating Marie’s mind, Michele makes sure that Marie is safe and on balance as she moves around her apartment.
We need your help in supporting dedicated caregivers like Indira and Marie through advocacy. To find out ways you can get involved, email firstname.lastname@example.org today.
“Parents deserve to be parents, not skilled nurses, and more importantly, children deserve to be children—not patients.” Two moms share how PDN impacts their families’ lives
This year, our major focus in New Jersey is to fight for higher reimbursement rates for New Jersey’s Private Duty Nursing (PDN) program. One of the most impactful ways to influence legislators is to engage clients and families into advocacy through testimony, which is delivered by these clients to legislators who are in key positions to influence legislators. Below, find powerful excerpts from two moms who support a PDN increase on behalf of their children and their families.
Dana I. – Mother to
BAYADA Client, Abi
“There is truly no way to explain on how much caring for a medically
fragile child impacts a family. Every errand, every event, every move of your
day becomes centered around their care. Abi has been authorized for skilled
nursing care by our insurance company, yet she still has five or more unfilled
shifts every week.
Lapses in nursing
coverage put tremendous pressure on our entire family—we often have to miss work
and stay home to provide for her care, putting strain on the family finances. Lost
nursing hours also means the entire focus of our time becomes all about our
medically-fragile child, and the balance between the other children becomes
strained and we often miss beloved activities or events.
Abi is not a child that
we can just 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. There are simply not enough nurses in home
care to cover all of the needs of my family and the needs of many, many others.
is not the answer. My precious daughter brings many challenges to our home, but
it would be heartbreaking to have to put her in an institution for lack of
nursing support. So here I am prayerfully putting a name and a face to those of
you who have the power to make a real difference in this area. Competitive
wages would bring stability to her home care nursing and allow our family and
families like us to stay together and thrive.” -Dana Insley, Abi’s mom
Emma K. – Mother to
BAYADA client, Lili
“While I count my
blessings that we have the right nursing team in place, I often think of the
families across the state that can’t fill their nursing shifts. It takes me
back to the last time our scheduled nurse had a family emergency and there was
no other nurse available to cover her shift. As a single mother of a
medically-complex, ambulatory child with no family in the area, you can imagine how it plays out when there isn’t a nurse available for
Lili: I have to call out of work myself and cancel any commitments I’ve made
for the day. I can’t get the groceries that I was planning to pick up or even
do a load of laundry since I can’t leave Lili alone for even a minute. And I
have to again plan to do these things during the times I’m expecting to have a
nurse to stay with Lili because I can’t get them done otherwise.
We as a society have developed a system of reliability for our communities: Teachers help children learn, police keep our streets safe, ER doctors save lives, and pharmacists fill our prescriptions. But we are failing in keeping home nursing readily available. Just as a prescription, Lili’s care is prescribed by her doctor and authorized by the state. But we cannot rely on its availability. I hope that our state decision makers prioritize home care, if solely for the fact that it keeps children like Liliana at home and keeps families together. Parents deserve to be parents, not skilled nurses, and more importantly, children deserve to be children—not patients.” -Emma K., Liliana’s mom
Dana and Emma exemplify the power of sharing your story. If you’d like to highlight the powerful story of your experience in a home care office, or the story of a client, their loved one, or a caregiver, contact email@example.com.
BAYADA’s Government Affairs Office (GAO) is proud to join with fellow advocates like you to continue to advocate for better wages for our caregivers and increased access to home health care for the tens of thousands of New Jersey residents that rely on this care to stay safe and independent at home. Thank you to our many employees, clients, and families who have advocated on behalf of yourselves, your loved ones, your staff, and your clients regarding our two major 2019 issues:
1. Personal Care Assistant (PCA) Program – Increased Reimbursements for Increased HHA Wages
GAO is working in collaboration with other providers and the New
Jersey Home Care and Hospice Association to educate our legislators on the
importance of adequate funding for the
Personal Care Assistant (PCA) program.This is especially important as the State recently mandated an increased
minimum wage. BAYADA supports a wage increase for all of our home health aides
(HHAs) for the incredible, lifechanging work they do—but additional advocacy is
necessary so state legislators understand the importance of proportional PCA
program funding so that providers like BAYADA can comply with the new mandate
and stay sustainable.
Click here to check out how HHA Indira helps her client Jessie stay at home, and about CHHA Michele’s special bond with her client Marie. We are hopeful that our advocacy efforts can lead to a fairer wage for aides like Indira and Michele, as well as better recruitment and retention rates across the ACSP practice so that all New Jersey residents who need this important service can access it. To find out how you can get involved, email firstname.lastname@example.org today.
GAO is working with the New Jersey Home Care and Hospice
Association to educate our legislators on the importance of adequate funding for the Private Duty Nursing (PDN) program.
Current PDN program funding makes it difficult for providers like BAYADA to
recruit and retain the nurses necessary to care for New Jersey’s most medically
complex and residents. This difficulty results in significant access to care
issues, as only 85% of scheduled hours are currently filled, and
vulnerable New Jersians are going without the care they need to stay safe and healthy
We are lucky to have home care supporters in the legislature who understand the struggles our caregivers and skilled nursing clients face—Recently, Bill S1733/A4575, which proposes a $10 per hour increase for RN and LPN home care services, was introduced. In addition to the increase, this bill also seeks to establish a “rate floor” so that managed Medicaid providers reimburse no less than the state fee-for-service rate for in-home skilled nursing services.
But we need your help in getting this bill to the finish line. Soon, this bill will be up for a hearing, and clients’ and employees’ testimony make the most impact in showing legislators the challenges that arise from inadequate funding and the associated access-to-care issues.
Click here to read excerpts from two clients’ testimonies regarding the importance of PDN in their lives. Powerful stories like the ones Dana and Emma share help our advocacy efforts and show legislators the impact of home care in making a real difference in vulnerable New Jersey residents’ lives. To find out how you can get involved, email email@example.com today.