Hearts for Home Care Brings Legislative and Public Awareness to over 43 Million Viewers

Hearts for Home Care has had a busy year, working to secure public and legislative awareness to home care challenges across the industry. Over the first half of 2021, the duo of Alisa Fox and Marissa Fogal has worked in conjunction with BAYADA’s Government Affairs office to urge legislators to recognize and address home care industry challenges through user-generated traditional media and social media coverage. Over the past three months, the Public Affairs team launched three state-wide media campaigns in Pennsylvania, New Jersey, and North Carolina focusing on the lack of state funding for both Private Duty Nursing (PDN) and Personal Care Assistant (PCA) programs, securing media coverage in major outlets like The Inquirer, NJ.com, and Spectrum News—all of which have garnered a total of 43,452,500 views.

Through their dedicated Hearts for Home Care social media efforts—which were formally added in September of last year—the Public Affairs team has been able to increase their audience reach to an additional 114,400 people over the three state-wide media campaigns, and these efforts only continue to grow.

BAYADA Director and Hearts for Home Care’s Senior Ambassador Hakeem Gaines speaking to reporters about the workforce shortage and retention issues with North Carolina’s Private Duty Nursing (PDN) program.

BAYADA’s Public Affairs team, in conjunction with the Government Affairs office, continues to advocate for medically fragile individuals and bring legislative action to the issues these populations face. To stay informed on important home care industry news and media updates, please follow Hearts for Home Care Advocacy on Facebook and Twitter!

Better Speech and Hearing Month: Using Communication Devices to Advocate

May is Better Speech and Hearing month and we would like to celebrate how our Hearts for Home Care advocates, Mark Steidl and Ari Anderson have never let their diagnoses stand in the way of making their voices heard. They are an inspiration to so many of their peers and fellow advocates ─ stopping at nothing to help and improve the lives of medically complex individuals who rely on home care to keep them cared for and safe.

Mark Steidl, from Pittsburgh, PA, doesn’t let communication challenges stop him from sharing his story with legislators. Diagnosed with Cerebral Palsy, he uses a Dynavox communication device to educate lawmakers on the importance of home care and the impact his home health aides and nurses have had on him. Mark operates the device by using the switches that are affixed to his wheelchair at either side of his head. The Dynavox allows Mark to type out what he wants to say, and then the device’s speakers enable Mark to communicate out loud.

Pictured: Disability rights advocate Mark Steidl (center) joins the Pennsylvania Homecare Association’s Advocacy Day in Harrisburg to tell legislators about what home care means to him. He is pictured here with BAYADA Home Health Care Hearts for Home Care Ambassador Kimberly Gardner (left) and CEO David Baiada (right).

Mark and his mother travel to the state capitol in Harrisburg, and to Washington, D.C. at least once a year to take part in Hearts for Home Care lobby days — days in which dozens of advocates gather to make meetings with legislators that will be voting on home care-specific legislation.

In a conversation with Mark about his advocacy work, he said, “Thirty years ago – before the advent of electronic communication devices, I would not have been able to communicate with you. If I had been born in 1965 instead of 1995, my parents might have been told to send me to an institution instead of raising me at home with all the support I need. Times have really changed. Advocacy and new ways of thinking have created those changes. But much more needs to be done and much more can be done. We have to keep advocating for the changes and the opportunities we want.”

Ari Anderson, from Charlotte NC, truly understands the importance his home care nurses have had on his life, and because of this, dedicates his life to advocating for them and the other individuals who benefit from their care: My nurses have provided me with life-sustaining care,” he says. Most die from [Spinal muscular atrophy] SMA type 1 by age 2.Ari was diagnosed with SMA Type I at 6 months of age. 38 years later, thanks to his dedicated nurses, new technologies, and medical therapies he is living his life healthy and independently at home.

With the help of his communication device, Ari has become a passionate advocate, inspiring all who meet him. His team of highly skilled nurses has also enabled him to graduate from high school, receive his bachelor’s degree, and earn a master’s certificate in technical writing. He now authors a column for SMA News Today and dedicates much of his time to advocating for home care and educating the public on its value. Most recently, using his communication device and eye-gazing technology, Ari brilliantly crafted a video he uses to educate North Carolina legislators about the impact of home nursing.

For Ari, skilled home care nursing has long-been a lifeline that has allowed him to grow up and thrive despite his prognosis. Most importantly, it has enabled him to be where he wants to be: at home.

Both Mark and Ari rely on skilled in-home caregivers to remain safe and cared for surrounded by their families at home. Like Mark says, the American healthcare system has changed and high-quality care at home is becoming the new norm as families and their loved ones choose home care over long-term care and nursing facilities. Lower costs of care and preventable hospitalizations are just two of the many reasons that home nursing care is optimal for the state and its residents.

However, skilled home nursing programs are state funded by Medicaid and the reimbursement rates given to providers are not enough to keep up with the competitive wages hospitals and long-term care facilities are able to offer. Without competitive wages, providers are struggling to attract qualified nurses to the industry, thus leaving medically complex individuals like Mark and Ari at risk without care. Our advocates are urging state legislators to invest in home care and raise reimbursement rates ─ as the future of our healthcare system is in the home.

Mark and Ari are super-advocates who are inspiring those around them to make their voices heard.  For ways you can advocate for yourself, your loved ones, and your community at-large, please email advocacy@bayada.com

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!

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.”

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

Where Does the Money Go? NC State Budget and Bill Tracking Update

State Budget Update

North Carolina is required to balance its budget each year, and health and human services makes up 22.4% of the already tight $24 billion budget

In North Carolina and across BAYADA’s GAO states, our legislative goals tend to revolve around two main tenets: First, achieving policies that streamline processes so that service offices can operate without added burdens and so residents can readily access care, and second, to increase reimbursement rates so that we can recruit and retain the caregivers necessary and ensure that we have the supply necessary to meet the demand.  

It seems like common sense—North Carolinians want to stay in their homes, and home care services cost states less than care delivery in a different setting. So why can’t legislators simply fund home care programs at higher rates? The truth is that there are many competing interests and priorities, and limited amounts of state resources.

It is important to recognize the constraints with which lawmakers must work. Last year, Health & Human Services represented 22.4% of North Carolina’s nearly $24 billion state budget, second only to education, which represented 57.5%. Looking forward to the upcoming budget year, the state’s fiscal research arm reported that top budget pressures include: public schools, higher education, the state health plan, and Medicaid/Health Choice—meaning that there is a lot of pressure on the state’s already tight budget—and that’s not to mention the other interest groups we compete with, such as state nursing homes and other healthcare coalitions.

As GAO continues to garner legislative support for $29.5 million in state funds needed for the Medicaid rate increases we are seeking, advocacy efforts will play an important role. Please watch for ways to support our legislative ask, and please reach out to Mike Sokoloski at msokoloski@bayada.com to learn how you can get involved in advocacy on behalf of your staff and clients.

NC Bills we are following


“I’m just a bill” – Knowing the path by which a bill must travel is important as we follow various bills. 

To date, 824 bills have been filed in the North Carolina General Assembly this session. GAO continues to work through the proposed bills to evaluate their impact on home health care, home care, and hospice. Below are a few bills that are of interest:

1. H70 – Delay NC HealthConnex for Certain Providers, sponsored by Representatives Dobson, Murphy, White, and Lambeth

Home care champion Representative Josh Dobson submitted the bill that extends the deadline by which certain providers, including home care and home health care agencies, must participate in and submit data to the state’s Health Information Exchange Network, NC HealthConnex.  We commend the bill sponsors for this delay.

While participation in and submission to NC HealthConnex is important and necessary in that it grants both the state and providers electronic, timely access to demographic and clinical data, our industry and others provider sectors do not have a consistent platform or an easy way to gather and transmit the required data. Access to this data and clinical information will help the state and providers identify spending trends that will facilitate health care cost containment while also improving health care outcomes only if the data is reliable and consistently reported.

This extended deadline proposed by House Bill 70 grants us additional time to meet the reporting requirements.  We thank all the bill signatories for recognizing the administrative burden and granting additional time to meet the requirement.

The bill passed both the House floor on March 27, 2019 and is headed to the Senate.

2. H745– Medicaid Funding Request for Private Duty Nursing (PDN), sponsored by Representatives White, Lambeth, Adcock, and Cunningham

Our health care members, a home care nurse (White), a hospital administrator (Lambeth), a nurse practitioner (Adcock), and a hospice nurse (Cunningham), introduced H745 to increase the Medicaid funding for nursing under PDN from $39.60 to $45.00 by requesting $4.1M for 2019-2020 and $8.3M for 2020-2021 in recurring state funds.

As health care leaders, they recognize the importance our services play in keeping some of North Carolina’s most clinically complex citizen at home and out of more expensive settings. While the necessary funds were not allocated in the House Budget, we have an opportunity to get it into the Senate Budget and are continuing to advocate for this option.   

3. H728– Increase Innovation Waiver Slots, sponsored by Representatives Insko, Hawkins, and Lambeth

This bill appropriates 500 Innovation Waiver Slots to address the waiting lists. It would support North Carolinians living with intellectual and developmental disabilities (I/DD) and help them receive needed services within their home and community.  The bill proposes to appropriate $5.3M for 2019-2020 and $10,9M for 2020-2021 in recurring funds.

4. S361– Increase Innovation Waiver Slots, sponsored by Representatives Insko, Hawkins, and Lambeth

This proposed bill attempts to address several different health care issues in one bill. This approach makes it challenging to garner support in its entirety.  The bill includes the following provisions:

  • Elimination of Certificate of Need (CON) – Any action that erodes the established process by which a need is determined may lead to destabilizing our health care industry. The established CON process allows for any group to apply for a Special Needs Determination should they feel health care needs are not being met in their community.
  • Establishes a carve-out for PACE organization – Any action that allows a group to be exempt from following Home Care Licensure Rules puts recipients at risk as the organization would not be required to follow health and safety rules outlined state licensure.
  • Medicaid Expansion – Any opportunity for the North Carolina’s working poor to have access to health care coverage, the better. This provision includes a work requirement with exceptions for individuals attending school and or deemed disabled.
  • Addition of Innovation Waiver Slots – Any opportunity for more individuals living with intellectual and development disabilities (I/DD) to have access to needed services, the better.

The introduction of this bill is the first step in a long process. GAO will continue to monitor and support the I/DD slot provision which aligns with our access to care goals. Some of the other items are very controversial because they create a slippery slope on oversight.

To find out what you can do to encourage your legislators to support the introduction of this bill, contact Lee Dobson at ldobson@bayada.com.

NC: SHE, GAS, and RAN Offices Demonstrate Advocacy by Building Relationships and Sharing Clients’ Stories


Sen. Alexander (back left) visits BAYADA client Rusty (front left) and his nurse, Vikki (front right) with BAYADA staff Cheryl, Jillian, and Rusty’s mother (back right).

GAO can’t do it alone, and in North Carolina we are proud to have so many employees that understand the impact of sharing their voice on behalf of all our staff and clients!

SHE and GAS Host Impactful Home Visit

Last month two offices, SHE and GAS, teamed up to host a home visit with newly elected Senator Ted Alexander. Our BAYADA team of advocates, including MIM Division Director Joe Seidel, GAS Clinical Associate Cheryl Reading and GAS Client Services Manager Jillian Fernald, as well as the client’s long-time nurse Vikki, spoke passionately about our services and the challenges we face in care delivery.

The visit was a grand success! The importance of home care and the work you do every day was certainly not lost on Sen. Alexander, whose wife and daughter are both nurses: “Our goal,” he explained, “is to keep families where they belong, together and at home.” These types of interactions lay the foundation for support of our legislative asks because the decision-makers see first-hand the impact home care has on families.

RAN Builds Relationships in a Different Way


BAYADA Ribbon Cutting Ceremony with Senator Wiley Nickel

Last month, the RAN office hosted a ribbon cutting ceremony to commemorate the grand opening of our new state-of-the-art simulation lab and training center. This was no regular ribbon cutting ceremony where the office invited current and prospective nurses to tour and see-in-action the simulation lab. We took the opportunity to educate lawmakers on the scope and breadth of what is possible in the home by inviting Senator Wiley Nickel to welcome the group. We also included Ed Troha, Vice President for the NC Chamber, who has four nurses in his family, to speak about the importance of the training center in job creation.

Additionally, former Senior Chairman for House Appropriations Nelson Dollar issued a proclamation to show his strong and constant support for home care. This center allows BAYADA to train nurses using real life scenarios that helps develop confidence, competence, and builds career-building skills to home health care nurse. Increasing awareness among legislators and other community leaders on the benefits of home care helps garner support as we work toward our legislative goals. 

Thank you to the many North Carolina staff and families that regularly share their voices in advocacy! To find out how you can get more involved, contact GAO Director Lee Dobson today!

NC: Legislature Kicks Off 2019, Former Home Care Champion Nelson Dollar Joins Speaker’s Staff


Former Representative and home care Champion Nelson Dollar joins Speaker of the House Tim Moore’s staff as Senior Policy Advisor

Lawmakers returned to Raleigh on January 9 for the 2019-2021 long legislative session.  We expect to see some changes in committee assignments and leadership, especially in the House Appropriations for Health & Human Service (HHS), with the election defeat of Chairman Nelson Dollar.

Dollar–the former chairman of the House Appropriation Committee—has transitioned from the public sector to a senior policy advisor to the Speaker of the House Tim Moore. Dollar has been a home care champion for years and was named BAYADA’s Legislator of the Year in 2016 and 2018 for his efforts. He was instrumental in securing much needed Medicaid reimbursement rates increases for nursing and aide services. He has also been instrumental in protecting from elimination the Certificate of Need (CON) process for our Medicare offices.  His expertise and knowledge on complex issues at the statehouse will serve North Carolina well. As you may recall, Dollar lost his seat by 884 votes last November to Democrat Julie von Haefen.

While we are sad to see our former Champion lose this leadership position, there are other home care Champions that we anticipate seeing in key roles. We expect to see Representatives Donny Lambeth and Josh Dobson as co-chairs of HHS. Further, we anticipate Senators Ralph Hise and Joyce Krawiec in chair positions serving the Finance and/or Health Committees. All four legislators are well-versed in home care and the challenges our clients and staff regularly face throughout North Carolina due to our collective advocacy efforts. This puts BAYADA in a great position to move forward with our next round of asks.

Our major reimbursement priority this session is to increase the Medicaid private duty nursing (PDN) rate from $39.60 to $45.00 over the course of two years. This increase is necessary to help us recruit and retain the high quality, compassionate nurses we need to care for the many North Carolinians that need skilled care to stay at home.

Sharing your voice is key to achieving our goals: Be sure to look for opportunities to advocate as we seek to support our clients and staff. Of note, please save the date and be sure to look out for communications regarding our Legislative Day, which will be held in Raleigh on May 1.