Transitioning to adult care poses unique challenges for developmentally disabled

By Walter Neary

Ty Walker has cerebral palsy. At 18, he’s legally an adult — yet with his developmental disorder, not just any medical clinic will be appropriate to his special needs.

A new clinic has become a growing destination for youths and adults with developmental disabilities because, its leaders say, we can do better than a system that just spins young people and adults into the world without support.

The year-old MultiCare Adult Developmental Clinic provides a “one-stop shop” to medical and community connections for patients with developmental disabilities as well as their families. The clinic aims to make it easier for a pediatric patient to transition to an adult patient and maintain a network of connected providers and community resources.

Walker has been concerned for some time about who will take care of him now that he’s growing out of being a pediatric patient. He saw several specialists during one visit to the clinic and got referrals from the MultiCare team.

“I’ve grown out of being with the kids, and I’m ready to join the adult community,” says Walker, from Spanaway. “I’m looking for a person I can trust. I’m not an ordinary patient. I’m looking for someone who is interested in my life, someone who can help me be healthy the rest of my life.”

The Walkers were not sure who they were going to turn to for Ty’s care. And that has been a source of dread, because they have been through this before.

“We have a 25-year-old developmentally disabled daughter,” says Ty’s father, Gerard Walker. “We have experienced the hardship and issues firsthand of trying to find care for her as an adult.”

The Adult Developmental Clinic was designed to support not just patients and families, but also providers who want to serve these patients and may not have a lot of experience with the developmentally disabled population.

“We do a fresh 360 view of people to define their needs, and we can offer this in one clinic visit so they don’t have to go to five offices all throughout town,” says Alan Gill, MD, the clinic’s cofounder. “We help them with transition and connect them to both medical care and groups that can help them connect to the world for the rest of their lives.

“Then we help them find the care providers that they need,” he continues. “Our intent is to provide ongoing support, not take over all of their care.”

The Adult Developmental Clinic formally began last spring on the first and third Thursday of each month at MultiCare East Pierce Family Medicine in Puyallup.

‘We have nobody to send them to …’ but not anymore

Transitioning to adult care is challenging for developmentally disabled patients for many reasons. Parents and children are accustomed to the nurturing environment of a pediatric hospital such as Mary Bridge Children’s Hospital, for one.

These patients are then expected to graduate to an adult world where there may not be enough available primary care physicians and other providers who feel educated about, and comfortable caring for, individuals with developmental disabilities.

The world could do better training care providers about that population, Dr. Gill says. And then there’s the challenge of finding a specialist both appropriate and willing to take on a special population.

Dr. Gill and cofounder Allyson Stoker, ARNP, along with their allies, began the long process of developing the clinic several years ago. There were not a lot of national models. They designed a unique team by recruiting local practitioners who were already doing this work individually, bringing them together to provide a multispecialty evaluation that pulls care together for a child or adult.

The way this works in practical terms: after each specialist sees a patient, they debrief with Stoker. She hears from each specialist and prepares comprehensive summaries and action items for providers and patients — a transition care plan.

This is a labor of love for her. While working in her home clinic at Mary Bridge Rehabilitation Medicine, Stoker heard story after story from frustrated parents about their children trying to enter the adult system. So she quickly signed on for the new clinic.

“As my patients with cerebral palsy, for example, were getting to be 16, 17, 18, we started preparing them for the transition … and it felt like there wasn’t anyone on the adult side who was ready to receive them,” Stoker says. “That was heartbreaking for me because I’d known these patients for many years.

“They would stay with us until they were 21, 22, because there was nowhere for them to land on the other side. And I would hear over and over from the pediatricians, ‘We have nobody to send them to.’”

For Dr. Gill, this is personal. He has a brother, son and many patients with developmental disabilities, so he has seen firsthand many of the challenges facing this population. He and colleagues at the Tacoma Family Medicine Residency have been taking patients with developmental disabilities for years. The numbers were becoming overwhelming.

“We are clearly the largest provider of care for adults with developmental disabilities in Pierce County,” Dr. Gill says. “By a long shot.”

What’s in a transition plan?

The transition plan contains information from a lot of specialists who patients would normally have to see in several places, presumably over several days:

• Physical medicine and rehabilitation (to assess functional/habilitative needs)
• Speech therapy (to review any communication and/or eating concerns)
• Psychiatry (for those needing diagnostic or medication management support)
• Staff from the Pierce County Coalition for Developmental Disabilities (to address other support needs such as decision-making support, employment, personal care, state services)

The team’s evaluation and transition plan can be presented to a primary care physician — which the clinic also helps patients find. Then the patient goes forth into the adult care world, able to return anytime to the Adult Development Clinic when new needs or challenges come up.

One immediate need is that 19-year-old Angelica Parker-Earl of Lacey is in discomfort for much of her waking hours. The Lacey woman has come to the clinic with her guardian, Courtney Earl, who speaks for her.

Parker-Earl cannot speak; she has hypoxic brain injury due to an arrested SIDS episode as well as cerebral palsy.

Parker-Earl’s pediatrician said it was time for her to get pain medications and other care from someone who specializes in adults. Her caregivers have not been able to find anyone to take her as a patient, so Parker-Earl and her guardian have come to Puyallup.

“It’s really stressful when pediatricians no longer want to see you, but you have these enormous challenges,” says Earl. “We’re here for help and to find the doctors who can meet her needs. I am so much more optimistic. The people at this clinic know what other doctors in the area can do.”

Caring for the whole patient

It would be natural if, so far, you thought this was all about medicine. But it’s more about health. The clinic brings young people together with not only medical resources, but also community resources. A big part of caring for youth transitioning into adulthood is helping them stay engaged and growing.

It’s all part of the transition from youth to adulthood, Dr. Gill explains. When someone graduates from high school, they risk losing both structure and connections to the outside world. The clinic thus connects patients and families to resources that can keep them busy and help them grow personally and professionally.

“There’s this whole other thing called ‘life’ — school’s done, now what do you do?” Dr. Gill says. “It’s amazing that at age 18, 19, 20, 21, many families are really not well connected to services that will serve them for the rest of their life.

“They’re at a loss with how to deal with the rest of their life,” he says. “If you just go home and stay there, anyone would lose skills and connections.”

The clinic provides adult lifespan support that begins with teens or youth 18 to 21 transitioning from pediatric care to adult care. But the clinic also welcomes adults with developmental disabilities who may have been children a long time ago but need help finding coordinated care today. Even for an adult, it can be a big challenge to assemble a care team that can help you with your developmental disabilities.

As part of Ty Walker’s visit, Dr. Emily Johnson took the time to ask him about not only his health, but his plans after graduation at Bethel High School (short version: hip operation, community college, computer coding and lots of wheelchair basketball).

She wanted to make sure he was connected to such plans and activities before letting him go. It’s clear Walker is connected. Not all such patients are. His father looked on with an approving expression.

“I love the word ‘transition,’” Gerard Walker says. “This really is about a transition, a big transition. I wish this had been here when my daughter was younger.”

Learn more about the MultiCare Adult Developmental Clinic