RWJF Community Health Leader’s 'Practice Without Pressure' Model Eases Stress of Medical Visits for Children with Disabilities
Deb Jastrebski is the founder and chief executive officer of Practice Without Pressure in Newark, Delaware, and a 2011 recipient of a Robert Wood Johnson Foundation (RWJF) Community Health Leader Award. Practice Without Pressure works with patients, family members, caregivers and providers to help people with disabilities receive quality medical, dental and personal care. The Human Capital Blog asked Jastrebski to reflect on her experience as an RWJF Community Health Leader.
Human Capital Blog: You founded Practice Without Pressure because of your son’s experience. Would you tell us about that, please?
Deb Jastrebski: My son, Marc, was born with Down Syndrome, and he had always been scared—terrified really—of going to the doctor, the dentist, or even to get his hair cut. And he had a number of health issues that required needles or other medical devices that scared him, so it was a frequent problem. We sometimes ended up holding him down just to get it done. It was a horrible experience for him, for me, and for the provider. We reached the breaking point when he was 11 and had to have allergy testing done. It scared him so badly, and he was screaming so hard, that he had blood vessels bursting in his face. I looked at him—my son in agony—and I just told the doctor we couldn’t do this anymore. So the doctor stopped the test, gave me a prescription, and wished me luck. It was clear to me then and there that there was no specialist who could help us, no low-stress path for us.
The truth is that it was like that with dentist visits and haircuts, too — whenever someone was in his personal space. And it wasn’t the specific procedure so much as it was the process itself that seemed to scare him. Marc didn’t have a lot of speech then, but he’d gotten his message through to me that day, finally. And as we were driving home, I promised him that we’d never do this to him again.
He needed a blood test soon after, and in thinking about how to make that workable, it occurred to me to start breaking down the process into tiny steps. So we did that, and we practiced it—Marc, his little sister and me. We did five-minute sessions a couple times a day. We’d use a paper clip to simulate the needle, and I remember when we would use the open paper clip to stick him he’d say to me, “Mommy, tickles.”
We found a lab that would work with us, thank goodness, and when we went in to get his blood test, he was still a little scared, but it was a lot more familiar to him. When they stuck his arm with the needle, he looked at me and said, “Mommy, tickles.” So he got the connection between what we’d practiced and what we were doing that day. And for the first time in his life, he came out of something like that without sweating and crying, and he was really proud. He kept saying, “Did it. Did it.”
So we did the same with dental work, and it worked also. What I didn’t realize at the time was that we were creating the practice model.
HCB: So how did your experience with Marc turn into an organization?
Jastrebski: I began talking with parents of kids facing similar challenges — in the Down Syndrome Association, the Special Olympics, at school, elsewhere. And I found that a lot of them had the same experience with office visits. So I started working with them, practicing the process. And we found some providers who would work with us.
Then about five years ago, I realized that while practicing in advance works for us, a lot of people still need support during the procedures themselves. So I conceived of a practice and procedure center where we'd do practice sessions, with doctors, phlebotomists, and others, so that folks could get their care under the philosophy of “practice without pressure.” We opened the center about three years ago, and I'm very happy to say that the philosophy and the methods are catching on. We work with family members, caregivers, kids, and the service providers, and we’ve seen more than 500 people with disabilities in our center. We've developed some really neat training programs that make a difference.
HCB: Would you tell us a little about your work with providers?
Jastrebski: Actually, we're writing a formal curriculum now. But basically, we do some lecture, some role-play, and offer some disability-specific information. Then we get into the techniques and methods, and do some hands-on work with them. They observe an interaction between a patient and a practice specialist—so a dentist sees a cleaning, an exam, x-rays being taken, and so forth.
We have practice specialists who work with the family or caregiver and the individual with disabilities, and then they bring in the provider, and it becomes a team thing. The practice specialist helps the provider learn the individual and how to approach them so that everybody is safe and comfortable. Everybody has to kind of learn a different way to interact.
Honestly, it’s hard to recruit providers. Some embrace it; some don't quite understand the need for it. I appreciate that change is hard for a lot of folks, including health care providers. For some reason, people are scared of the disability population, especially folks with cognitive issues. On the other hand, I’ll tell you this. Once you find a provider who's going to work with your child, the whole family comes there. So they do OK financially!
HCB: What kind of impact has the Community Health Leader experience had on your work?
Jastrebski: Oh my gosh. It's been amazing. When I was first nominated, and they told me I'd won, it was really humbling to be in such amazing company. And really, it's a huge responsibility, not just an honor. Once a Leader, always a Leader. And you truly have a responsibility to give back the rest of your life. So that was a big decision for me, but I was very grateful and feel very blessed. You know, when I tell someone—a provider, for example—that I’m a Robert Wood Johnson Foundation Community Health Leader, their eyes widen, and it brings instant validity to my work that might not have been apparent to them, otherwise.
HCB: Do you have any advice for this year’s Community Health Leader recipients?
Jastrebski: I sure do. The 2011 group talked to each other a lot. We have a monthly conference call with whomever we can get on the phone. It’s been really helpful to our projects. I'll get on the phone with Jamie Kamailani Boyd in Hawaii or Andrea Ivory in Florida, with questions and ideas. We really support each other, and that's a huge thing. So I hope this year’s Community Health Leaders do that. It makes me feel connected in a way I wasn't before. The things we do to get to be Community Health Leaders can be isolating, and you can really feel like you're on your own, so to be able to talk to other people who get it—it's pretty amazing. So I'd say to them, embrace your fellows.