Pitt heads group to professionalize wheelchair service
“Only about 5-10 percent of the people in the world who need a wheelchair actually get them,” says Jonathan Pearlman, faculty member in the School of Health and Rehabilitation Sciences. And many of those are poorly suited to the people who get them.
To help professionalize wheelchair service worldwide, the U.S. Agency for International Development and the World Health Organization (WHO) funded the International Society of Wheelchair Professionals (ISWP) and chose Pitt to lead the group. Pearlman is director of ISWP and Rory Cooper, director of the Human Engineering Research Laboratories (HERL), is serving as co-director.
Historically, to fulfill the enormous gap in wheelchair services worldwide, agencies distributing aid, and the developing countries accepting the help, have taken a something-is-better-than-nothing approach, handing out hospital-style wheelchairs, built for temporary use indoors, en masse to those in need.
But there is no coordination of distribution. “The materials are being delivered by different organizations around the world,” Pearlman says. “Nobody is talking to each other.”
Not only can basic wheelchairs be ineffective medicine, they can be harmful to the health of those with disabilities. And healthcare workers may lack the training to fit or prescribe this device.
While there are many societies and conferences focused on prosthetics (replacement devices) and orthotics (devices that fit around an existing limb, for instance, to correct a problem or weakness), he says they are not leading the charge to help improve wheelchair services for the 20 million individuals who develop the need for a chair each year.
“Not a lot of people understand the size of the need for wheelchairs,” Pearlman says. Nor do most countries provide governmental support for wheelchairs, counting on charities, rather than hospitals, to make the chairs available. The device often is viewed as a stopgap measure. ISWP hopes to convince people that wheelchairs are crucial to restoring people to life – to jobs, studies and their own households.
Finding not just a wheelchair but the right wheelchair can be critical. The biomechanics of wheelchair propulsion can cause shoulder and wrist problems for users, Pearlman explains. If a spinal injury causes sensation loss, those in wheelchairs may develop pressure sores from ill-fitting devices, or from devices they are not taught to use properly. Badly fitted wheelchairs also may cause postural deformity and difficulty in breathing or in controlling one’s bowel or bladder, he adds.
ISWP currently is developing research tools to test the skills of those trained to prescribe and fit wheelchairs. The first such online tests have been taken by 150 people around the world. The organization also aims to develop standardized research data sets about wheelchair use.
ISWP already has developed a calendar of wheelchair services trainings based on WHO guidelines, as well as a map of worldwide wheelchair service organizations. The group is trying to coordinate where such training is available and encourage its wider distribution, and to leverage the international community to bring more training and funding to a wider swath of the globe, particularly by lobbying for new laws in many countries. While wheelchairs distributed in the U.S. are required to have FDA approval, in other countries they are largely unregulated.
“We’re trying to solve the problem but make sure resources are used wisely,” Pearlman says. “It’s a little bit of the Wild West right now.”
One of the 18 people involved in ISWP at Pitt is Maria Hernandez, a PhD student in rehabilitation science and technology in SHRS, attending Pitt from Colombia to study assistive technology. She intends to bring ISWP’s expertise back to her native Medellin, Colombia’s second-largest city.
“There are many barriers for people with disabilities” in her country, Hernandez says. “People with disabilities are usually the poorest of the poor.”
Although the federal government provides everyone with basic healthcare, wheelchairs are not available as part of this national plan. While a physical therapist in the U.S. likely would fit a wheelchair user with the proper type of chair, a Colombian physician’s prescription goes to a local wheelchair vendor, “who is not necessarily going to assess you and choose what is the best chair for you,” she notes.
Hernandez hopes she can bring the experience she has gained here, including the WHO training, to Medellin to help fill the gap.
“I think it’s a good moment for change to happen,” she says. “I’m looking forward to going back to connect with these people who are advocating for new laws … in assistive technology.
“The importance of this society,” she says, “is that people from different countries are going to be able to learn from each other. People from developing countries, in general we face the same challenges.”
ISWP has 60 members thus far from outside of Pitt, many of whom are part of its advisory group or one of three working groups that will develop wheelchair standards, create strategies for organizations to advocate for better wheelchairs in more countries and promote the WHO training.
Advisory board member groups are from Brazil, Ireland, South Korea, Canada, the United Kingdom, Japan, South Africa, Germany, Mexico, Switzerland and across the U.S.
Pitt was chosen to lead the group, Pearlman explains, because its missions of research and teaching does not compete with organizations providing wheelchairs around the world. The University also was chosen for its broad and long-term expertise in assistive technology development at HERL, as well as its resources in global health, engineering and international affairs, he says.
“It’s a first of its kind grant for us,” Pearlman adds. Within a few years, he sees the new organization, once incubated here, taking off on its own, perhaps as an organization within the United Nations.