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.