Category Archives: Disabilities
Roderic I. Pettigrew, PhD, MD, is director of the National Institute of Biomedical Imaging and Bioengineering (NIBIB) at the National Institutes of Health (NIH). He was a member of the inaugural class of the Robert Wood Johnson Foundation (RWJF) Harold Amos Medical Faculty Development Program.
On a fateful day in 2006, 20 year-old Rob Summers, a standout collegiate baseball pitcher at Portland State with aspirations to play in the big leagues, was a victim of a hit-and-run accident while standing in his own driveway. His injuries left him paralyzed below the chest, and his doctors informed him he would never move his legs again.
I first met Rob at NIBIB’s ten-year anniversary celebration. It had been just four years since his accident, and he had already broken new ground in spinal cord injury recovery. During the event, Rob shared his incredible story about the experimental procedure he had recently undergone as part of an NIBIB-funded research trial. In the trial, Rob became the first human to have an electrical stimulator implanted on his spinal cord with the goal of restoring some function to previously paralyzed muscles.
Rob spoke about how, in just weeks after implantation, the stimulation enabled him to hold himself in a standing position for the first time since his injury. In addition, he began to sense when he was uncomfortable in his wheelchair. Rob went on to describe how, seven months into the trial, he discovered he was able to move his toes, ankles, and legs on command, a feat that shocked the researchers, as they never expected Rob to regain voluntary movement.
Human Capital News Roundup: Verbal abuse among nurses, deinstitutionalization, prenatal genetic testing, and more.
Around the country, print, broadcast and online media outlets are covering the groundbreaking work of Robert Wood Johnson Foundation (RWJF) leaders, scholars, fellows, alumni and grantees. Some recent examples:
Nearly half of newly licensed registered nurses have been verbally abused by colleagues, according to a study by the RWJF-funded RN Work Project. Those who reported being verbally abused had lower job satisfaction and unfavorable perceptions of their work environment, and were more likely to say they intended to leave their jobs within the next year. Nurse.com and the News Press report on the findings. Read more about the study.
Amy Dockser Marcus, AB, recipient of an RWJF Investigator Award in Health Policy Research and award-winning journalist for her coverage of cancer, wrote an article for the Wall Street Journal about long-term health effects for adult survivors of childhood cancer. Research shows that more than 95 percent of adult survivors suffer from a chronic health condition by the age of 45, the story reports.
Harold Pollack, PhD, MPP, wrote a piece for the Washington Post Wonkblog about the successes and failures of deinstutionalization. On the whole, he writes, moving individuals with disabilities out of large institutions into family- or community-based settings improved the lives of millions of Americans living with intellectual and developmental disabilities, like his brother-in-law. However, it was much less successful for Americans suffering from severe mental illness. Pollack is a recipient of an Investigator Award in Health Policy Research, and an alumnus of the RWJF Scholars in Health Policy Research program.
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.