KU research center working to reduce barriers to health care for people with disabilities
- on November 1, 2011
Lawrence resident Ranita Wilks has heard the horror stories about women with disabilities who have had such humiliating experiences during a doctor’s appointment that they didn’t go back.
Sometimes, it’s an issue of not having a mammogram machine that’s adjustable or a restroom that’s not wheelchair accessible. Sometimes, it’s a provider’s attitude or lack of education. Wilks said a woman with cerebral palsy didn’t go back for a pap smear after her doctor told her she would need someone to hold down her legs which have spasms. About 10 years later, she was diagnosed with ovarian cancer.
Wilks, 44, who suffered a spinal cord injury at age 4 and uses a wheelchair, also has had difficult experiences. She shared them during a one-on-one interview at Independence Inc. in Lawrence, where she works as an independent living skills specialist.
She said her doctor suggested removing her uterus without even asking what she wanted or talking about her options.
“She just assumed that I wasn’t going to be a mom,” Wilks said, with frustration in her voice. “Women with disabilities aren’t supposed to be sexually active or you are not going to be moms or anything of that nature. That’s a common theme among women with disabilities.”
Wilks is part of a Community Engagement Initiative project in Lawrence that’s working to improve health care access for people with disabilities. The project has specific steps and guidelines to help achieve success, and it was developed by Kansas University’s Research and Training Center on Independent Living.
It’s just one of about a dozen projects to come out of the center each year, which recently was awarded a five-year, $4.25 million grant from the National Institute on Disability and Rehabilitation Research.
Glen White is director of KU’s Research and Training Center on Independent Living, or RTCIL, which serves about 450 independent living centers across the country, including Independence Inc.
KU works in partnership with other colleges to research issues pertaining to people with disabilities and from that research it creates training programs to help them — hence its name.
White said the center’s main goal is to make sure its work is relevant to the one in eight people who have a disability.
“You can make the greatest product and invention in the world but if people don’t use it or like it, then what’s the use of spending all of the money? We don’t want it on a bookshelf collecting dust.”
White said the key component of their research is people with disabilities.
“We don’t want to just create something for people with disabilities. We truly want to have them involved and that’s really critical in the research that we do,” he said. “We want them to advise us as we go along.”
About 10 employees work at the center, which is on the fourth floor of the Dole Human Development Center on KU’s main campus. One-third of them, including White, have disabilities. White said he was injured in a car accident at age 15 and it left him paralyzed from the waist down.
“So, I’m not just talking from the ivory tower; these are things that I’ve experienced every day of my life,” he said.
Among the center’s research projects under way:
• Academic success. It is teaching students with disabilities how to advocate for themselves at Kansas University, Kansas State University, Haskell Indian Nations University and other colleges. White said students need to know what accommodations they are entitled to under the American With Disabilities Act and how to respectfully ask professors and university personnel about those accommodations so they can be academically successful.
White recalled attending a junior college in Minnesota where he depended on other students to carry him to a class that was up four flights of stairs.
“I didn’t know any better and I didn’t know how to advocate,” he said. “Now, there’s a new law that’s opened the doors for a lot of people. Although the law exists, it doesn’t mean it still doesn’t happen.”
• Living well. The center has created a training manual to help people with disabilities learn to exercise and eat healthier. This includes learning how to read labels and cook healthier. Participants also visit community recreation centers to see how accessible they are and learn exercises they can do. This program is offered in a number of cities, including Lawrence, where it is provided through Independence Inc. and Wilks is coordinator.
“Sometimes isolation and depression can be high in people with disabilities and exercise helps reduce things like pressure sores and depression and just getting involved in the community helps overall health,” she said.
Some participants have lost between 15 and 40 pounds and improved their overall function through the program.
• Access to health care. The KU center developed a guide to help communities pull together to remove barriers for people with disabilities. In Lawrence, the project is under way. First, they gathered information about what the barriers are for people with disabilities. Now, the center and Independence Inc. are meeting with health professionals to educate them and talk about solutions. For example, on Wednesday they will be meeting with Lawrence Memorial Hospital’s facilities director to talk about parking issues.
Access to health care is a real problem in Lawrence.
During a community forum in June, people with disabilities identified the following as top barriers:
• Transportation — No public transportation available evenings and Sundays, lack of inexpensive alternatives for off-hours, and insufficient spaces at health facilities, including LMH.
• Infrastructure — Inaccessible facilities and equipment, insufficient number of providers for specialty needs, and lack of durable medical equipment providers and services.
• Knowledge and attitudes — Lack of knowledge about effective delivery of preventive services for people with disabilities, stereotyping, unwillingness to provide accommodations, and focusing on a person’s disability rather than the person’s overall health.
Wilks shared a frustrating experience she had with an orthopedic doctor.
She said she made an appointment because she was having pain and numbness in her hands and had a couple of falls. During the appointment, Wilks said the orthopedist said flippantly several times, “Well, you know you use your hands as your feet.”
She said there was no discussion about how she used her hands to transfer or the types of treatment available. At first, he wasn’t going to do anything, then he advised her to take Advil and provided her with a brace.
“My hand is now immobilized. No discussion or concern about that — an orthopedic surgeon. All it did was make my situation worse,” she said.
Like anyone else, she uses her hands to cook, get dressed and bathe, among other everyday tasks. She ended up finding care elsewhere and has relieved the pain through warming methods and massage techniques.
“I had a pretty tough childhood, so I’m not much about crying over minimal things, but it was sort of kind of a depressing thing when I left,” she said. “He didn’t get the bigger picture.”
BECOME AN EDUCATED MEDICAL CONSUMER
It will be from 2 p.m. to 4 p.m. Wednesday at Independence Inc., 2001 Haskell Ave. Participants will receive course notes and a book, “What To Do When Your Child Gets Sick.”
The class is open to anyone and will address the following questions:
• Do you leave the doctor’s office having more questions than when you entered?
• Do you feel you want to take a more active role with your doctor when communicating about your disability?
• Do you wonder whether your symptoms justify a trip to the doctor?
• Do you need help knowing where to get resources before going to the doctor?
To pre-register for the class, contact Alison McCourt at 841-0333 Ext. 105 or firstname.lastname@example.org.