Medical Legal Partnership: Caleb’s Story

Published on

Caleb, who has spinal muscular atrophy, depends on electricity to run his ventilator, suction machine and feeding tube. CHOP’s Medical Legal Partnership helped his family keep the utilities on so now Caleb can focus on other things — like preparing for kindergarten.

When it’s a struggle to pay the bills, you pay the essential one first. That’s what Bernadine Chery did last summer and fall. She paid the family’s electric bill.

Without electricity, her son, Caleb, would die.

Caleb, 5, has spinal muscular atrophy, a progressive neurological disease that robs children of control of their muscles, including those needed to breathe. Caleb has required a ventilator since he was 6 months old, and his other essential medical equipment — like the suction machine that clears his airway and his feeding tube pump — also run on electricity.

“We use a lot of electricity,” Chery says. “That bill is always high.”

No gas and winter coming

So Chery and Caleb’s father, Richardson Richard, let the gas bill go unpaid. Philadelphia Gas Works turned off the gas, leaving the family with no heat as winter was approaching. “It was a big worry for us,” Chery says.

When Caleb’s care team from the Children’s Hospital of Philadelphia (CHOP) learned of the family’s plight during a home visit, social worker Sara Kurlansik, MSW, LSW, and her son’s pediatrician, Sarah Winters, MD, did more than offer sympathy. They offered hope and action.

They immediately realized the family was a candidate for a special CHOP program operating out of the Nicholas and Athena Karabots Pediatric Care Center: the Medical Legal Partnership. It connects families with lawyers, who help them work through complicated legal issues that impact their child’s health and bring relief. Some cases are handled by students from the University of Pennsylvania Law School; others through the nonprofit Community Legal Services (CLS). A donation last year from the Reed Smith law firm allowed the program to expand and serve more families. All services are free to the families.

Within days, Lydia Gottesfeld, a lawyer with CLS who works out of Karabots two days a week, had negotiated with Philadelphia Gas Works to get the family’s gas turned back on in the North Philadelphia home they rent.

Change in income complicates benefits

As she built trust with the family, Gottesfeld learned Caleb’s parents and two sisters, Chloe and Chelsea, had lost their health insurance and their food stamps. Chery had recently been able to go back to work after spending four years at home caring for Caleb. Her modest income as a nursing assistant and Richard’s fluctuating income as an Uber driver complicated the family’s access to public benefits.

“We’re still low-income people,” Chery says. “When you have a child with special needs, things are not just difficult, they’re hard. Very hard.”

Gottesfeld helped them to navigate complex rules around income reporting for public benefits. Before long, their Medical Assistance was restored and their healthcare access along with it. Their application for food stamps was initially rejected, and Gottesfeld is in the process of helping them appeal that decision so they can afford healthy food.

Caleb, who is nonverbal and has limited use of his limbs, is doing well. “He hasn’t been in the hospital for more than a year,” Chery says proudly. “He’s a fighter.”

Big steps in the future

He loves to be read to and enjoys his favorite TV shows, Daniel Tiger’s Neighborhood and Barney & Friends. Chloe, 6, and Chelsea, 2, are always cuddling and playing with him.

Two important steps are on the horizon. The family would like to move to a home with a first-floor bedroom and bathroom so Caleb, who weighs 42 pounds, doesn’t need to be carried up the steps. And Chery is in the process of registering Caleb for kindergarten. Given his special needs, he will be evaluated and may be assigned to a special school. If the family encounters discrimination or any trouble accessing the services Caleb is legally entitled to, Chery knows that Gottesfeld is there to help.

“Lydia was wonderful. We appreciate how much she helped us,” Chery says. “I would tell other families to ask for help from the Medical Legal Partnership. They’ll be able to help.”

Next Steps