Cerebral Palsy and New Jersey Transition to Adult Coordinated Care: Mary Kate’s Story

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Transitioning to adulthood poses special challenges for young adults with special needs. This CHOP program was created to help.

Cerebral palsy patient in thrift store holding purple shirt Mary Kate, 23, is one busy young adult volunteer.

Each week, she spends one day at a food pantry in Bradley Beach, NJ, two days at the Visiting Nurse Association’s thrift shop in Manasquan, and a day preparing and delivering folders at Hackensack Meridian Health Ocean Medical Center in Brick. Then, on Fridays, she attends a special program for special needs young adults at Chef’s Academy, where there’s cooking, music therapy and dancing.

Despite staying incredibly busy helping others, Mary Kate, who has cerebral palsy, needed help herself as she began the transition from pediatric medical care to seeing adult providers. That’s when she and her family turned to the New Jersey Transition to Adult Coordinated Care (NJTACC) Program at Children’s Hospital of Philadelphia (CHOP).

New Jersey Support Drops Off at 21

NJTACC aims to be the bridge for teens and young adults with intellectual and developmental disabilities as they age out of pediatric programs and care and enter the adult world.

Mary Kate’s mother, Sally, is a teacher and was plugged into services offered to New Jersey residents. “As an educator myself and the parent of a special needs child for 23 years, I had done my homework. But when your child turns 21, the state just drops them,” Sally says. “You have this bitterness that the support is just gone.”

Mary Kate had been a CHOP patient in Orthopaedics and Neurology for bigger problems, but she otherwise saw doctors near the family’s home, close to the Jersey shore. When Sally heard about NJTACC, she didn’t hesitate to make an appointment.

‘Incredibly Thorough’ Exam

Their initial NJTACC visit, at CHOP’s Specialty Care Center, Princeton at Plainsboro, lasted two full hours. They met with Clinical Director Alyssa Siegel, MD; nurse practitioner Kim Schadt, MSN, CRNP, CCRP; and program manager Stephanie Pratico, who also serves as a family consultant.

“I was just blown away with how incredibly thorough they were,” Sally says. “I went in with no expectations. Dr. Siegel knew Mary Kate’s background and all her care at CHOP from over the years.”

They discussed Mary Kate’s physical, social and emotional needs going forward and what support she and her family required to give her a full, happy and healthy adulthood. “It was so informative,” Sally says.

Finding the Right Adult Providers

Cerebral palsy patient in thrift store smiling One critical aspect of NJTACC is identifying and connecting families with providers who care for adults and also understand and have experience with special needs patients. “That’s something that’s missing from the medical world,” Sally says.

Mary Kate’s cerebral palsy affects her mobility and speech. While she walks independently, she has balance issues so needs someone nearby to steady her. And while her emotions — including her ear-to-ear smile — come through loud and clear, she’s nonverbal and uses a devise to communicate.

“Dr. Siegel is coaching me to find a physician for Mary Kate near home,” Sally says. In addition to providing medical care, “more is required of doctors. There are lot of forms to fill out. Dr. Siegel called me again last week and said, ‘I found three more doctors for Mary Kate.’ She’s someone who’s on your side.”

Finding the Right Support Coordinator

The New Jersey Division of Developmental Disabilities assigns a support coordinator to each person with a disability; the coordinator is tasked with working with each individual and family to ensure they have access to needed programs and state services.

At our appointment, Stephanie asked me if we were happy with our support coordinator,” Sally says. “When I told Stephanie, no, because I had to do all the research myself, Stephanie helped me make the connection to a different support care agency.”While driving home from our appointment, I had already received a call from the director of the agency. I couldn’t believe how quickly we received help and results!

Pratico’s two children have been patients in CHOP’s Trisomy 21 Program since birth, and her personal experiences as her own kids went through the transition process to adult care ignited her desire to create a program to help other parents in New Jersey. NJTACC was started as a pilot with funding from a legislative appropriation from the State of New Jersey. Its success led to a formal program launched in 2019.

“Talking parent to parent, Stephanie gets my frustrations and concerns,” Sally says. “She knows the New Jersey system backwards and forwards. She’s so informative.”

Finding the Right Activities

Cerebral palsy patient playing guitar in music therapy class Because her family was proactive, Mary Kate is involved in daily activities that fit her interests and that she enjoys.

“Mary Kate is a very social person,” Sally says. “She loves being around different types of people.”

Her unsteady movement means she needs a support person with her at all times for safety. The family hired an aide, and the state pays some of the cost.

Sally sees how volunteering has given Mary Kate a purpose, and the two would like to help other adults with disabilities have similar opportunities. “We’d love to open a shop where they can be involved in the community and feel good about themselves, too,” Sally says.

The NJTACC also could have helped Mary Kate and her family with all types of community planning such as employment, day programs and transportation, as needed.

Families can also tap into the NJTACC for advanced planning support for things such as formalizing legal capacity, finding residential support and understanding financial options.

I can’t say enough good things about the program,” Sally says. “I would tell other families: Go and see how they can help you.