Making Medical Procedures More Humane for People With Intellectual and Developmental Disabilities

In 2011, RWJF named Deborah A. Jastrebski an RWJF Community Health Leader in recognition of her work to create a less stressful health care experience for people with developmental and physical disabilities who fear dental care, blood drawing, hair and nail care, and other standard medical and personal care procedures.

The organization she founded in Newark, Del., Practice Without Pressure, teaches medical practitioners and others how to serve these individuals with dignity, respect, and with sensitivity.

The problem. For Marc Jastrebski, visits to the dentist or to the doctor for simple medical procedures were nothing short of a nightmare. Born in 1989 with Down syndrome, Marc was unable to undergo any intrusive intervention without being heavily sedated or placed on a “papoose board.”

“It was a straitjacket with a nice name,” his mother Deborah says. “And sedation was awful on him. It took tons of medication.”

The Jastrebski family’s experience is not unique. According to a research article in the September 2002 Journal of Developmental and Physical Disabilities, many individuals with intellectual or developmental disabilities fear dental treatment. As a result, they are unable to cooperate with the procedures or avoid them altogether. Many dentists, as well, have been unwilling to treat patients with such an aversion to the procedures.

The problem extends to other medical procedures, highlighting a lack in medical training. In a survey conducted by Special Olympics, 52 percent of medical school deans, 53 percent of dental school deans, 56 percent of students, and 32 percent of medical residency program directors responded that graduates were “not competent” to treat people with intellectual disabilities.

A “nothing but God” moment. A turning point for the Jastrebskis came when Marc was 11 and had to have allergy tests that consisted of 27 small needle point insertions of allergens under the skin. “It took 27 minutes to do three,” his mother recalls. “He was screaming and crying so hard that blood vessels were bursting in his face.

“It was a ‘nothing but God’ moment,” Jastrebski says. “On the way home, I told Marc, ‘We won’t ever again do this to you. We will figure this out.’ His father and I agreed. There had to be something that wasn’t going to torture him.”

From the top of the hill. Jastrebski was working as a computer specialist at the time and had previously been a physician’s assistant. With that background, “I knew procedures and I understood how to analyze a problem,” she says. “I took myself away from the Mom part and looked down from on top of the hill. I thought, ‘If he’s not held down, we will practice small steps, and it will work.’”

So she broke down a visit to a phlebotomist to have blood drawn into a sequence of steps: Walk into the office. Sit down. Extend the arm. Cleanse the area. Then, do a dry run using an extended paper clip to simulate a needle. And, provide a lot of verbal encouragement as you move through each step.

To prepare Marc for the doctor’s visit, Jastrebski borrowed equipment from a phlebotomist’s office and at times used Marc’s younger sister as a model. Then came the visit, and the system worked perfectly. Marc had the blood draw done with no trauma or restraint. “When the blood ran into the tube,” she recalls, “I almost fell out of the chair.”

The founding of Practice Without Pressure. In 2001, working out of her kitchen, Jastrebski began to refine her idea. She visited physician and dental offices and even a children’s haircut shop—some people with intellectual disabilities fear haircuts as much as medical procedures. She used the slow, step-by-step process to walk clients and patients through an array of procedures.

For example, to simulate the X-ray machines dentists use to take pictures of patients’ teeth, she slowly moved a paper towel tube near the patient’s jaw.

The goal, Jastrebski says, is not to move into a person’s space in a way that is frightening.

Jastrebski incorporated Practice Without Pressure in 2002 and two years later was working with the new organization full-time. In 2009, she and her team opened a center in a single-family home in a mixed-use neighborhood in Newark.

The building has two fully equipped dental offices; a medical office that includes a scale, blood pressure gauge, examining table, and phlebotomy equipment; and a multi-purpose room that includes a barber chair.

There, dentists, doctors, phlebotomists, and hair stylists trained in her method see clients and patients. They also work with caregivers, such as parents or home health aides, to help them understand how to use the process for procedures done at home or in a care facility.

“All the clinicians working with us have bought into the model,” she says. “We focus on the person first, then the procedure. You have to undo damage. You have to make things calm. It’s an amazing process.”

One of the people who got on board with the model was Roy LaFontaine, former division director of Delaware’s Developmental Disabilities Services (DDDS). What convinced him was Keith, a man of 47 who had been institutionalized for most of his life and had defied the best efforts of clinicians to treat him. When a dentist trained in Jastrebski’s methods was able to treat Keith without sedation, LaFontaine was sold.

“He said he believes that Practice Without Pressure works because it finds the humanity in every person it serves,” Jastrebski says. “With our model, Keith is just another person coming through the door who needs care.”

The RWJF award and going national. Jastrebski used the $20,000 personal portion of the Community Health Leader award to get a bachelor’s degree in behavioral science and psychology from Wilmington University.

With the $105,000 project portion of the award, Jastrebski and her staff coached 34 medical and dental professionals who provide care for people with disabilities and 43 dental and dental hygiene students, using a curriculum developed by Practice Without Pressure.

“The goal of the training was to advance the perception that people with disabilities can participate in procedures without coercion,” Jastrebski wrote in a report to RWJF.

The project ran from July 2012 through July 2014. By the end of 2014, Practice Without Pressure had served more than 800 individuals with disabilities and trained another 800 clinicians, residents, and dental and medical students, either directly or through their attendance at workshops.

Among a group of 141 adults seen through a contract with DDDS, the number requiring sedation for some medical procedures was reduced from 90 to 69. All told, Jastrebski says, Practice Without Pressure methods have saved the state of Delaware some $260,000 in sedation costs for patients with disabilities. “Some people still need sedation, but it’s a last resort and it’s done without restraint,” she says.

Looking ahead. With a full-time and part-time staff of 15, Practice Without Pressure is now refining its curriculum and training programs, helping people and groups who want to set up similar centers, and making training videos and educational packages.

“We’ve identified a solution to a worldwide problem,” Jastrebski says. “I get email from across the country and overseas.”

But much remains to be done. For example, she notes with disappointment that the standards of the American Academy of Pediatric Dentistry still allow “protective stabilization” of patients. “You may hold them down without permission and force care on them,” she says. “That’s trauma. It’s appalling to me in this day and age.”

She says many clinicians still have to be convinced to try her methods, although the prestige of RWJF backing has been helpful in this area. “Providers are people and they’re taught a certain way to get the procedure done,” she says. “It’s still a challenge. I’m not going to lie about it.”

RWJF Community Health Leader perspective. Jastrebski said the award “validated” both her—a person who had been without a college degree—and her organization. “We have a seat at the table now,” she says. “There was so much more respect. It was a wonderful feeling.”

She said she also benefited from networking with others in her cohort about getting grants and running a nonprofit. “When you do this work, it’s lonely,” she says. “You’re out there. To be brought together with like-minded people, to be with your peers, is huge.

“It was amazing, personally and professionally, and it will be forever.”

RWJF perspective. The Foundation recognized the first 10 RWJF Community Health Leaders in 1993—unsung and inspiring individuals who work in their communities, often among the most disenfranchised populations, to address some of the nation’s most intractable health care problems.

The formal recognition of these Robert Wood Johnson Foundation Community Health Leaders and their work has often launched them to greater levels of influence and extended their reach to serve more vulnerable populations. For more information on the program see the Program Results Report.

“Community Health Leaders have been characterized by three specific traits—they are courageous, they are creative, and they are committed,” said National Program Director Janice Ford Griffin.

“Through the program, we at the Foundation have had the opportunity to recognize innovative and courageous local leaders behind ground-breaking efforts in communities across the United States,” said Sallie George, MPH, program officer at RWJF. “These individuals remind us that one person can have a powerful impact on health and health care within their communities.” The last round of leaders was chosen in the fall of 2012. The program closed at the end of 2014.

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Creating a stress-free health care experience for people with disabilities provides real access to care