From Client Parent to Client Advocate: Shelby Myers’ Incredible Impact at BAYADA

When you provide home health care services for a living, you develop a deep appreciation for the people you meet:

• The clients and families living with serious medical challenges
• The professionals dedicated to supporting them and making their lives easier

Sometimes, you meet one incredible individual who has been both.

Shelby Myers has been:

• The mother of a BAYADA client
• A community liaison for her local BAYADA Pediatrics office

And now, she advocates at state and national levels for the needs of home health care clients, families, and employees.

We interviewed Shelby to learn what it’s like to experience home health care from every angle.

The Client Experience

Question: My sincere condolences for the loss of your son, Clayton. For our readers, could you describe what it was like to suddenly become a family in need of home health care?

Shelby Meyers: Sure. In our home, we frame things as before Clay got sick and after Clay got sick, because our lives changed so dramatically.

I was a typical soccer mom, married with three kids. I was in the PTA at school and a professional photographer. Clay played baseball. Our oldest daughter was in softball and Girl Scouts. We had a nine-month-old baby boy.

We were just the typical family, and I had no idea what home health care was.

Question: Then Clay became sick at the age of six. And four years later, you gave birth to your twins who now are in high school.

Shelby Meyers: That’s right. Clay became sick October 16, 2004. It’s funny, I can’t remember what I made for dinner two nights ago, but I remember every detail of that week.

Clay woke up with a low-grade fever. The next day, his fever went ridiculously high. We almost called 911, but we saw the pediatrician instead, and the fever went down with an NSAID. He seemed a little better.

By the next night, something did not feel right. I went to check on Clay, and he was just lying there, motionless. We thought we had lost him.

Everything from that point on just became horrific. Horrific. From the ER, to CAT scans, to a transfer to CHOP (Children’s Hospital of Philadelphia). He had brain surgery and was in an induced coma. They couldn’t stop the seizures.

And finally, we said, enough is enough. It had been a total of five months in the hospital. Clay was still very critical, still seizing. But we said, we’re taking him home.

He was on countless medications and feedings around the clock. He had a tracheostomy and was on a ventilator. Medical equipment… you name it, he had it.

BAYADA gave us some fabulous nurses; they were unbelievable. To this day, I still talk to some of them. My support system of family and friends and our home nurses helped make us the people we are today. 

Sadly, Clayton was diagnosed with a rare disease known as DESC, disseminating encephalopathy in school-aged children. They tried everything to control his seizures but, tragically, lost him at the age of 14. Shelby wrote an e-book about their experience, called Out of the Bubble.

Providing Family Services

Shelby Meyers: I commend our families for what they go through daily. Imagine trying to put my child on the ventilator, saving his life, while my two-year-old is pulling on my leg because she wants to play, or someone needs help with their homework. Parents of medically fragile children still have to work for pay and benefits. These are real-life scenarios that happen 24/7.

Question: How would you say that experience changed you and influenced your career direction?

Shelby Meyers: Back then, I never met anyone else in our position. So, I made a commitment to speak openly with other families and share all I had learned. For them, the most comforting part is just knowing someone else has walked a similar path.

That led to a new role at BAYADA Pediatrics as Special Needs Advocate, providing community outreach and education.

I loved leading parents to essential resources: funding for items not covered by insurance, state benefits and programs. Honestly, it was heartbreaking to witness them living through the challenges we faced. But equally, having walked in similar shoes allowed me to recognize their needs and fill voids they didn’t know they had.

 

Around that time, Shelby was also advocating with home care families and legislators. She chaired a state Epilepsy Task Force for three years. She ran an online support group, and she started pursuing her higher education in Public Service and Public Health.

Then, Shelby was recruited into a Government Relations position at the advocacy organization, Hearts for Home Care.

Shelby graduates this year from Brown University with her Master of Public Health degree

Advocating for Client Families

Question: Hearts for Home Care is a BAYADA community supporting quality care at home. What do you do in your current role?

Shelby Meyers: Our team works with home care clients and providers. Together, we speak as a collective voice to educate lawmakers on the challenges facing the home care industry. We help to humanize policy issues and advocate for government decisions that benefit vulnerable people in need.

Question:What do you think matters most in getting enough state and federal funding for home care?

Shelby Meyers: Education, awareness, and relationship building. Part of that work is introducing lawmakers to home care clients and families, so they can see the complexities they face and how important home care is as a lifeline.

I am eternally grateful to the Baiada family, BAYADA, and Hearts for Home Care for the opportunities they create to make a difference in people’s lives. Home care services create normalcy that some families cannot get any other way.

Join our movement to provide home care for people in need

Find job opportunities at jobs.bayada.com; become an advocate at Hearts for Home Care; or make a donation at bayada.com/support