For Marc Jastrebski, who was born with Down syndrome, routine visits to the doctor or dentist were like waking nightmares. He feared health care providers so much that he would scream and hit those around him—sometimes so intensely that he broke blood vessels in his face. As a result, he missed medical visits and faced health problems.
"Standard practice for working with fearful patients had been to subdue them or hold them down," said Marc's mother, Deb Jastrebski. "I knew there had to be a better way."
Deb, a former physician's assistant, began to help Marc prepare for medical and dental appointments by breaking down each routine procedure into small steps. Over the course of two weeks, she rehearsed these steps with Marc, which enabled him to cooperate during routine health visits without her help and without sedation or restraints.
It was not long before other families with children with special needs started knocking on Deb's door. That led to the foundation of Practice Without Pressure, a nonprofit organization in Newark, Del., that works to change how health care providers are taught to treat people with special needs. Practice Without Pressure also helps people with special needs learn skills to handle routine dental exams, blood draws, women's health exams, and nail and hair care.
Today, the organization works with hundreds of individuals, families and providers, delivering both practice sessions and actual medical treatment for patients with disabilities. Marc, meanwhile, supports patients during medical visits in addition to working a part-time job. "When Marc comes in to help us, he will sometimes sit in the dental chair and have a simulated filling done to show other patients that it's okay," said Deb. "It's a long way from that day when the allergist handed me a prescription for a blood test and told me, 'Good luck.' I don't want other families to face that anymore."
For creating a strategy to help people with disabilities complete routine medical visits without fear, Deb Jastrebski has been named one of 10 recipients of the Robert Wood Johnson Foundation (RWJF) Community Health Leaders Award. The award honors exceptional men and women who have overcome significant obstacles to tackle some of the most challenging health and health care problems facing their communities. She received the award during a ceremony in Baltimore, Md., on November 9.
The approach is also cost-effective because patients seen by Practice Without Pressure are less likely to require sedation or restraint and are better able to take advantage of preventive care, which leads to fewer medical complications down the road, Jastrebski said.
"Deb is a true inspiration to anyone who has the honor of knowing her," said Rita M. Landgraf of Delaware Health & Social Services. "Her ability to take her vision and empower a vulnerable population by introducing them to a stress-free approach to preventive care and treatment is transformative. In addition, she has taught the medical community a new path to serving this population in a more humane manner."