By Sheila G. Kelley, Development Coordinator
In a big brick building in Wichita sits an incredible facility that creates customized seating systems for people with all types of disabilities. Cerebral Palsy Research Foundation, CPRF, has been helping people for 50 years, customizing wheelchairs to fit a person’s specific conditions.
The name can often lead people to think the only disability the group works with is cerebral palsy. It may have started that way but now works with all types of disabilities.
The program supports the overall health and wellbeing of people with disabilities by providing funding for medical equipment and assistive technology, and the provision and customization of wheelchair seating systems.
“We provide financial aid for adaptive strollers, ramps to get in and out of the house, communication devices for a kid at school, home modifications and many other items,” said Kacee Shuler, Director of Community Outreach.
The CPRF Wheelchair and Posture Seating Clinic is one of only three Medicaid-approved seating clinics in the state for children and the only Medicaid-approved clinic serving adults. The clinic serves about 800 people per year through the clinic statewide.
These seating systems are designed for individuals who use their wheelchair for up to 16 hours per day and require extensive customization and modification to enhance mobility, increase independence and maintain or improve healthy daily living.
Typically, they serve 35-37 individuals in Harvey County for this service. CPRF staff works to leverage funds by developing “funding packages” for their clients. Once CPRF commits a dollar amount to an item, staff then work with the individual or family to identify and approach other sources of funding, thereby creating the funding package.
A saying from the founder was to say you’re two seconds away from a disability.
“And that is true. So, we are here when that happens,” Kacee said. “We can do a lot of outreach but in the end, people tend to think about disability when it happens to them or a to a family member.”
The process to receive a customized wheelchair begins with a prescription written by the patients’ doctor. Then the client has an on-site evaluation appointment where staff can figure out what is needed and figure out what would be best for the client.
The clinic has its own occupational and physical therapists who help in the assessment, fitting and completion of the chair.
It’s very important to make sure the person is in the position they need to be in.
“What we do is very foundational. It helps you breathe, helps you eat and digest and swallow,” Kacee explained. “If you can move independently, you don’t really think about that. You just do it.”
After the assessment is done and a plan in place, customization begins. Staff get the client in a seated position that they need to be in for their best living.
Positioning is particularly important when talking about wheelchairs. When a person is in a wheelchair for 16 or more hours a day, they need something that’s going to be comfortable but also prevent pressure sores and contractures from getting worse.
“What we do is provide customization from the frame up. Most of our clients have a custom molded seat,” said Kacee. “So, one of the many benefits of having occupational and physical therapists involved is they can help the client find that perfect fit as the seating is being constructed.”
The client is put in the proper position that they need to be in. Measurements are taken for where their buttocks are and optimal leg and back positioning.
Those fittings are put into the computer and a custom seat mold is made. After receiving the seat mold from the manufacturer, staff pad it and put fabric on it. The padding and related products are stitched and cut inhouse by their fabrication technicians.
“It’s a specific type of padding we use that is conducive to maintaining but still being flexible enough as well,” Kacee explained. “Sometimes a special cover is needed. It really depends on the person’s need level: their ability to adjust their body weight, their ability to lean back.”
Once a chair is complete, the client learns how to operate it in an open gym area where they start and stop, practice turns and other activities the client needs to know to operate the chair to its utmost usage.
“We have people follow the lines,” Kacee said. “We make sure everything is exactly as it needs to be before we let them out the door.”
Wheelchair manufacturing is overseen by the Food and Drug Administration to meet certain standards. CPRF is FDA-certified to change durable medical equipment so they can customize a chair to a persons’ specific needs.”
They also have an area where they accept donated wheelchairs. Staff strips them down and places each part into a specific shelving area. Those pieces are then used to customize clients’ chairs where there may be an insurance gap or an extended waiting period to receive a part.
“Power is one of the most expensive parts of the chair. So, we can put power from a donated system on another chair for someone who can’t afford to add power or their insurance doesn’t pay for it,” she said.
Insurance usually covers a child to get a new chair about every three to five years which makes it difficult because kids grow a lot in three to five years.
“So, a lot of our little kids’ chairs, we make them so we can move them up, move them out,” she said.
Depending on a lot of outside factors they can’t predict, it can take six to eight weeks for the whole process. They saw an increase in waiting time in getting parts during the pandemic due to supply chain complications.
CPRF tries to use local contractors whenever possible. They might need help finding contractors in certain areas, but they feel it’s the best option typically.
The United Way 