Town hall meeting held at SADI offices to identify issues in research project

As a person with cerebral palsy, John McElreath is frustrated by the number of people, including health care providers, who also assume he has a mental disability as well.

The disorder, along with his arthritis, makes it hard for him to coordinate his movements. But it doesn't mean his brain is malfunctioning, McElreath said during a town hall meeting Thursday at the Semo Alliance for Disability Independence, or SADI, offices in Cape Girardeau.

"People will come up to me and say, 'Hey, little buddy,'" the 21-year-old man said, his voice rising. "I say, 'I am not your friend, I don't know you and leave me alone.'"

Many people are surprised when he speaks with intelligence, McElreath said. "It is to the point where I have to use big words and grammar to show how smart I am."

Poor communication is just one issue identified during the town hall conducted as part of a research project funded by the National Institute on Disability and Rehabilitation Research. Dr. David B. Gray of Washington University in St. Louis is leading the research into how well the medical community is serving people with disabilities.

The project isn't designed to develop new government rules that would impose burdens on doctors or hospitals, said Gray, an associate professor of neurology and occupational therapy. Instead, the study will look at how to improve interactions between providers and people with disabilities.

First in a series

The Cape Girardeau meeting was the first in a series of similar meetings that will be held across the state, Gray said.

The group of about 40 people completed a 19-page survey and then held discussions the general state of health care for the disabled in Southeast Missouri as well as transportation, communication and physical barriers to care. McElreath attended with his mother, Tracey McElreath, and twin brother, James.

Overcoming physical barriers can be as simple as having a scale that a wheelchair-bound person can use to determine their weight or exam tables that can be lowered.

"We are not out to make every single office accessible," said Gray, who has used a wheelchair since suffering an accident in 1976. "There is not that much demand."

But knowing which physicians, primary care and specialists, take extra steps to accommodate the disabled could mean more effective treatment and a better experience for the patients, Gray said.

The goal is to complete the study by summer 2011 and create a model for use in other states to make similar evaluations, he said.

One of the biggest barriers to care in rural areas is transportation. Participants on Thursday identified long wait times, advance scheduling requirements that don't fit the rhythm of their physician visits and a lack of evening transportation as issues they must contend with.

Donna Thompson, director of personal care services for SADI, said it is difficult for her organization to expand its transportation services due to cash constraints. But the study will help identify where bottlenecks exist and how to better coordinate among several agencies, she said.

"This is going to be an ongoing study to determine what we can do to make health care more available to people with disabilities in this area," she said.

rkeller@semissourian.com

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