Susie Breitenstein, PhD, RN, PMHCNS-BC, is an assistant professor at the Rush University College of Nursing and a Robert Wood Johnson Foundation (RWJF) Nurse Faculty Scholar.  Breitenstein is a child and adolescent psychiatric clinical nurse specialist; she works with children and families with developmental and intellectual disorders.

My Uncle Greg was born in 1947. He was the 5th of six children.  About six months after his birth, my grandparents were advised to place him in an institution. Greg had the genetic disorder, Trisomy 21, more commonly known as Down Syndrome. In 1947, there were few services for children and adults with intellectual disabilities and very little expectations for independence and cognitive and social abilities. In fact, institutionalization was considered the best option for the child and family. My grandparents rejected this option and chose to keep him at home and raise him with his siblings. This was not an easy decision as they were told that he would never walk, learn, or participate in society.

Throughout his life my grandparents, Greg’s siblings, their spouses, and his 25 nieces and nephews took great joy in his accomplishments and his personality. After he learned to walk, every evening my grandfather would take him on a walk in the neighborhood. When he learned new things, his family rejoiced. When he participated in family, religious and social events, we applauded. When he sang ‘Silent Night’ off key, we beamed.

Greg was full of life—the friendliest and happiest person I’ve known.

During Greg’s life, many changes occurred regarding understanding of Down Syndrome and treatment options for individuals with Intellectual Disabilities. In fact, in 1959, the chromosomal abnormality causing Down Syndrome was discovered. In the 1960s there emerged the field of developmental pediatrics and understanding that an enriched environment can support cognitive function. In the 1970s, the right of every child to a free and appropriate education was established.

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.