Blog Takeover: My Family Hosted a Legislative Home Visit ─ You Should Too.

My name is Lisa Letterman and my son John was in a severe car accident in 2020, which left him paralyzed from the neck down, unable to walk, talk, or breathe on his own. As he was preparing to be discharged from the hospital, I unfortunately was not aware of any other long-term care option other than a nursing facility, so I made the difficult decision to send him to a facility in Virginia. But after a short time, it was clear that John’s health and quality of life were deteriorating, so I started researching other care options until I found home care.

After a long and stressful separation, John was finally able to return home to receive in-home care under North Carolina’s Private Duty Nursing (PDN) services. Since returning home with one-on-one nursing care, his condition has improved immensely. He no longer requires a feeding tube, he is now able to talk on his own and is even slowly making progress in regaining movement. However, there is a new hurdle that we face: trying to find enough nursing coverage for John. There is a critical nursing shortage that leaves families like mine struggling to care for our loved ones on our own, putting us in a constant state of exhaustion and concern when we can’t get coverage. I knew that something must be done to fix this shortage, so I started to advocate.

Our experience with a legislative home visit:

Recently, John and I invited our North Carolina Representative, Dudley Greene into our home (virtually), to show the importance of in-home nursing services and to advocate for better access-to-care. At first, I wasn’t sure what to expect from the virtual visit, but I can tell you it was an incredible experience that I believe other home care families should consider when wanting to advocate and make a difference.

Before the visit, BAYADA client services manager, Rachel Miller, handled the logistics. Once we agreed to opening our home, she handled everything from scheduling, practicing our call, and keeping us updated. When the 30-minute meeting began, it was like Rep. Greene was sitting in our home having a conversation with us. He could see all of John’s machines, medical routine, and he listened to the challenges we face. It was clear by the look on Rep. Greene’s face that he was truly understanding our situation in a way that no letter, email, or phone call could describe. We had his undivided attention for 30 minutes and in that time, we showed him the power of home care. After the visit was over, both John and I were impressed with how easy and rewarding the process was.

Top Left to Right: BAYADA CSM, Rachel Miller; BAYADA Government Affairs Manager, Cai Yoke; BAYADA Director, Kristen Church
Bottom Left to Right: North Carolina State Rep. Dudley Greene, BAYADA client & NC resident, John Letterman during the virtual home visit.

Why I advocate:

I advocate for home care because I can’t image what it would feel like to go through what John, and others like him, have had to experience and not have anyone around to speak up on your behalf.  I have seen John in every stage of his recovery: in the hospital, nursing home and then at home. It is because of PDN that John is thriving and living the quality of life he deserves. I want other families to have access to this same high quality, in-home care, but without better state-funding, that won’t be possible.

John Letterman with BAYADA nurse.

Why YOU should participate in a home visit:

Legislators like Rep. Greene determine the budget and funding for these types of programs, so we must do our part to educate them as best we can. I believe that legislators want to make a difference in their communities and help their constituents, but most are not aware these issues even exist. The more that decision-makers understand of the benefits of in-home care, the more advocates we have supporting our cause. Whether it’s a virtual or in-person home visit, these types of interactions with legislators give them a glimpse inside our challenging environment and help them understand the importance of in-home care ─ something that an email, letter, or phone call could never convey.

Advocacy Matters!

Despite the fact that many people in government and regulatory positions agree that home health care is a cost-effective, patient-preferred solution, it continues to be prioritized below institutional care. Not investing in home care will decrease the supply of qualified workers, increase turnover, and compromise the quality of home care services. At Hearts for Home Care, we help those that care about home care by enabling YOU to get involved at the capacity in which you’re able to do so.

Email us at advocacy@bayada.com or visit our website  in order to learn more about the home care advocacy community and find opportunities to get involved.

Patient Recognition Week: Celebrating Patients Who Live Their Life to the Fullest Thanks to Home Care

For thousands of Americans across the country, home care allows them to be contributing members of society, giving them the freedom and independence to live life to the very fullest despite their diagnoses. During National Patient Recognition Week, Hearts for Home Care celebrates some of these unique and inspiring patients who are foraging their own path and letting nothing slow them down. These individuals are proof that quality, in-home care, can truly change someone’s life for the better.

La Mondre Torohn Pough

La Mondre Torohn Pough, South Carolina.

LaMondre Torohn Pough not only lives his life in his community, independently, but is also contributing member of society. Thanks to the support of home health aides who care for him and keep him safe at home, LaMondre has become a highly successful businessman, owning his own podcast, 5P with LaMondre, and company that focuses on inspirational speaking, entrepreneurship, and consulting. If it weren’t for his in-home caregivers, LaMondre would need to be cared for in a long-term care facility instead of thriving at home.

In return, LaMondre is a passionate advocate for the healthcare heroes who care for him along with other people with disabilities. He says: “Caregivers contribute so much to the community of people with disabilities and society as a whole. Effective advocacy is essential to ensure that we create an equitable and sustainable future. We are in this together.”

John Letterman

John Letterman with his home care nurse, North Carolina.

After a severe car accident in 2020, North Carolina resident, John Letterman was left paralyzed from the neck down, unable to walk, talk, or breathe on his own. Unfortunately, as he was preparing to be discharged from the hospital, John’s family were not told they had the option of bringing John home under Private Duty Nursing (PDN) care. Knowing no other option, they placed him in a nursing facility where his health deteriorated.

After a long and stressful separation from his family, John was finally able to return home to receive PDN services in his home. Since returning home with one-on-one nursing care, his condition has improved immensely, no longer requiring a feeding tube, able to talk on his own, and slowly making progress in regaining movement. Thanks to this quality, in-home care, John recently invited Representative Greene into his home (virtually), to show the importance of the care he receives and advocate for better access to care. John said that it’s important that decision-makers understand the impact of home care, espeically if they are the ones passing the budget and determining funding. “We need more people educated about home care so they can be advocates for us too,” he said.

Erin Hamby

Erin is 20 years old and relies on highly skilled nurses to care for her complex medical needs in the comfort of her home. If it weren’t for access to home care, Erin would unfortunately be in a skilled nursing facility, separated from her family and friends and without the personalized care she receives at home. However, thanks to in-home care, she has not let her diagnosis slow her down! With the support and care from her in-home nursing team, Erin has been attending college at Caldwell Early College and most recently, she was accepted at N.C. State, which she will be attending virtually in the fall!

Erin Hamby, North Carolina.

Erin’s father says that home nursing is crucial to Erin’s quality of life: “It allows her to be home and not in a facility. Her nurses have become her friends and they are invaluable to us as a family in managing her medical needs, equipment, and prescriptions. I don’t know how we would manage without these nurses, to be perfectly honest.”

Advocacy Matters!

Despite the fact that many people in government and regulatory positions agree that home health care is a cost-effective, patient-preferred solution, it continues to be prioritized below institutional care. Not investing in home care will decrease the supply of qualified workers, increase turnover, and compromise the quality of home care services. At Hearts for Home Care, we help those that care about home care by enabling YOU to get involved at the capacity in which you’re able to do so.

Email us at advocacy@bayada.com or visit our website  in order to learn more about the home care advocacy community and find opportunities to get involved.

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!

Successful Storytelling at the North Carolina Legislative Day

Submitted by Mike Sokoloski, Grassroots Advocacy Manager, GAO

​On Wednesday, May 17, more than 60 BAYADA employees and one client arrived in their red attire to advocate to the North Carolina legislature, effectively communicating the importance of home care through storytelling to more than 110 legislators! We gathered on the red carpeted steps of the General Assembly to honor our Legislator of the Year, Senator Tommy Tucker. He has been a steadfast supporter of home care. Last year, he inserted language to increase the nursing rate by 10% for medically fragile children.

Click here to access our Hearts for Home Care Advocacy photo album on Facebook. >>
“While the medical condition of your clients puts them at high risk for hospitalization and placement in nursing homes, they deserve to stay at home, and they can with support of home nursing,” said Sen. Tucker. “The work that you do helps North Carolinians have a better quality of life, and saves the state tremendous amounts of money. We absolutely need to invest in these services.”

Speaking to the vital importance of advocacy, Chief Government Affairs Officer Dave Totaro said, “We must continue to recruit new voices to create the movement necessary to protect and retain benefits critical to the care of our clients. BAYADA has always led the way and we will continue to do so.”

I had the privilege of being joined by a new BAYADA employee, Gastonia, NC Pediatrics (GP) Client Services Manager Foster Krebs. He made an immediate connection with Sen. John Alexander with a story about a client family’s struggle, noting that we cannot retain field staff on one of his pediatric cases.

 

“After the first visit with Representative Hurley,” said Foster, “I was less anxious and felt more comfortable. In fact, once I realized my story resonated with lawmakers, I was able to enjoy myself.”

Keeping this engagement with legislators throughout the year is vital as well. Legislative Day is just a start to the numerous district visits, town halls, and home visits to come in 2017.

“I’m so proud of our staff,” said Area Director of Government Affairs Lee Dobson. “It was clear they had powerful stories to tell and were telling them. Their enthusiasm was contagious and in true BAYADA fashion, our smiles were seen and felt.”

We were there to seek an increase to the Medicaid aide rate from $13.88 to $17.00, over two years, and to communicate how one-on-one in-home aide services can help reduce health care expenditures by minimizing costs associated with falls, ER visits, and re-hospitalizations, and prevent or delay institutionalization while preserving quality of life. Home care also creates jobs in the community and allows families to continue to work, while being a cost-savings to the state.

This was understood by Senator Andrew Brock, who said, “I understand why you are asking for the increase. You won’t find the people to do the work at what you’re able to pay. This is a worthwhile allocation.”

A special thanks to Raleigh, NC Adult Nursing (RAN) Transitional Care Manager Paulette Troy for being the Legislative Nurse of the Day. For her volunteerism, she was recognized in both the House and Senate chambers, who said, “It was a privilege to represent BAYADA.”

Advocacy is an important role in the political process. We appreciate our advocates for making the time to be the voice for our staff and clients by sharing our stories. The General Assembly was a sea of BAYADA red. Thank you!

In PA, No Obstacle is Too Big

Submitted by Rick Hynick, Director, Client and Family Advocacy

I was recently accompanying a mother and her  daughter who require home care services to the state Capitol to meet with elected officials about a rate increase, to help attract more nurses to home care as the mother/daughter team are in urgent need of help.  As we went from one meeting to another, I kept thinking about how much I admired the mother for her determination as she needed to push her daughter’s wheelchair everywhere we went.  As we neared the office location of our last meeting, we encountered a set of stairs and a wheelchair lift that was not functioning.  Instead of not attending the meeting, the mother accepted help from another person and we worked together to get the family beyond the obstacle and to the meeting where much success was encountered.

Two Legislative Visits Build Champions in MD

Submitted by Shannon Gahs, Associate Director, MD Government Affairs (GAO)

Photo: Matt Paske, Delegate Brooks, and Shannon Gahs

Baltimore, MD (BAL) assistive care Associate Director Matt Paske and I visited two delegates this week: Delegate Benjamin Brooks and Delegate Antonio Hayes. We shared information with both men about the extent of care that can be given at home and the types of clients we serve. Both delegates are interested to learn more and continue the conversation during a home visit with one of our clients in their districts. District office visits and home visits are two of the key ways BAYADA’s Government Affairs Office (GAO) helps legislators learn about home health care.

Government Affairs Maryland Office Tour Shares Information and Finds Outpouring of Interest

Submitted by Shannon Gahs, Associate Director, MD Government Affairs (GAO)

Last week, Chief Government Affairs Officer Dave Totaro, the newest member of the Government Affairs Team Grassroots Advocacy Manager Mike Sokoloski, and I went on a tour of every service office in the state.  We discussed current events in federal and state politics and shared how BAYADA has impacted policy decisions while getting to know the dedicated employees we have across the state.  We were overwhelmed by the outpouring of support and interest employees had in getting involved as ambassadors.  For more information on advocating for our clients and employees, reach out to Mike or me!

PA Ambassador Named 2017 BAYADA Hearts for Home Care Ambassador Rookie of the Year

Submitted by Laura Ness, Director, PA Government Affairs (GAO)

 Each year the Government Affairs Office (GAO) selects one outstanding Ambassador as their Rookie of the Year. The individual honored must be a new Ambassador who has made an impact on clients’ lives and on the Ambassador program.

As GAO discussed the nominees it was evident that Berks County Visits (BRK) Nurse Trisha Lasher was the clear winner.  Trisha is an RN and was BAYADA’s first field employee to serve as a Hearts for Home Care Ambassador.

While she was nervous about her first meeting with a legislator, she decided to keep her commitments as promised and do it on her own. We are so happy she did because she hasn’t stopped since. Trisha started by visiting Representative Jim Cox (R) in his district, and followed up with him later that year in Harrisburg at Lobby Day. She wrote about her experience in the BAYADA Bulletin, which prompted a joint home visit with Representative Cox and the Reading Adult (RAD) Office. Because of the relationship she has built with Representative Cox, he took immediate action to help an adult client when he visited her.

The client had been trying to get a chair glide installed in her house for five years. After the visit, Representative Cox made several calls to service coordinators, found systemic fraud and flaws in the system, and was able to get the client the chair glide within six weeks of the home visit.

Building on their relationship, Representative Cox agreed to write letters of support for our pediatric rate increase and the Medicaid spend-down issue.

To further her advocacy efforts, as election time rolled around and GAO hosted the Bring the Vote Home Campaign, Trisha enlisted the help of all the office staff to call all clients. They educated clients on voting, the PHA voter guide, and let them know about absentee ballots. Trisha then organized field employees to deliver absentee ballots.

From building relationships to advocating for clients’ needs, Trisha has shown her dedication to being an excellent Hearts for Home Care Ambassador.

Honorees traveled to Washington, DC to celebrate their achievements. They enjoyed a private festive reception before heading to dinner and the awards presentation at a local restaurant. Senator Tom Carper joined the group to address some of the major issues affecting health care at the federal level, and to congratulate our Ambassador of the Year awardees. Before heading home, Ambassadors and their guests also spent time touring the city with stops including the White House, Jefferson Memorial, Lincoln Memorial, and the US Capitol.

Ambassador Spotlight: Proctor’s Immediate Passion for Advocacy is Palpable

 Submitted by Mike Sokoloski, Grassroots Manager (GAO)

Less than a week after the PA Ambassador Training, Mechanicsburg Pediatrics (MBP) Client Services Manager Candice Proctor made it clear that she was going to be at the forefront of our grassroots advocacy charge throughout the Commonwealth.  Candice reached out to State Representatives Rothman and Mehaffie and had her first legislative visit scheduled with State Rep. Mehaffie two weeks to the day following our training.

During the visit, Candice spoke to Pennsylvania’s pressing issues for BAYADA: an increase in the PAS rate and Equalized Access for constituents of the Representative looking for Home Care as an alternative to long-term institutionalized care.  As a follow-up, Candice invited him to attend a home visit in his district.

Rep. Rothman was a guest speaker at our PA Ambassador training. Candice took her advocacy efforts to the next level with this particular opportunity, having the Representative join her on a home visit! During the home visit Representative Rothman met Sophia, one the MBP office’s longtime clients. The visit was a success!. Not only does Representative Rothman now have a greater understand of the wide breadth of home care, but it has also affected him personally. Rep. Rothman said, “Sophia’s personality profoundly impacted me…It was an important visit.”

Recently, Candice was able to attend a House Democratic Caucus Meet & Greet in Harrisburg.  She was able to advocate and network with the Democratic leadership team and get an idea of how they work collaboratively with all interested parties, stakeholders, and constituents to help move Pennsylvania forward.  Candice hasn’t slowed down.  She is currently working with clients and families to participate in upcoming Advocacy Days in Harrisburg.

None of this would have been possible without the help and support of her office director Kim Auchey and the entire MBP team.  Advocacy is a group effort that is clearly alive and well in the MBP office!  Thank you for your support and commitment to advocacy at BAYADA.

Getting the Ball Rolling: Tips to Opening a Legislative Visit

Submitted by Mike Sokoloski, Grassroots Manager (GAO)

You’ve attended the annual legislative Ambassador training.  You’ve studied the talking points.  You know the fact sheet.  To make the transition from “Hello” to “Equalized Access” it would help to fill the script with soft transitional conversation that does not take too much time from your purpose.  Here are some ways to gain confidence headed into the meat-and-bones of your legislative interactions:

  • Google the legislator’s name and local newspaper name for search results containing stories of his or her involvement in the community.
  • Ask me for a “footprint” of the BAYADA clients and staff residing in the legislator’s district.
  • Go to the legislator’s webpage and scroll for recent activity related to home care or health care.
  • Ask me to research any previous meetings that Ambassadors or GAO staff has had with a tenured legislator.
  • At a week forward, week in review, or staff meeting in your office, ask your colleagues if they have any knowledge or had any interactions with the legislator you are visiting. You’d be surprised!

Remember: You’re the expert in the room during your time with a legislator.  Your State Director has provided you with ample resources and I encourage you to reach out to me with any questions or concerns.  I will be thrilled to help in any way possible.