Aphasia: Misunderstood, Misrepresented

Little known, little documented in Montana

by Shawn Newton

"Is that swallowing or is that the speech thing?"

If you call your local health care provider or any other medical institution and ask for information about aphasia, this may be the first response. And one can see how it is valid. Aphagia is a condition that inhibits a person's ability to swallow. Aphasia is a condition in which an individual cannot process language.

"We don't really have any data on that. It's not something that gets collected."

This may be the next thing you hear. Recently, Montana Rep. Deborah Kottel of Great Falls, sponsored a piece of legislation that might make the last statement a rarity among Montana's health providers.

House Bill 105 or the Emergency Department and Hospital Discharge Data Reporting Act sought to "provide data related to the treatment of persons admitted to a hospital or treated in the emergency department of a hospital..."

Rep. Kottel spoke with the Courier about the importance of this legislation to the potential quality and resources available in Montana. "Once collected this data would be shared with all Montana hospitals, collectively the entire system would benefit.”

HB 105 died in committee after a vote of 8 to 8. "There was a lot of discussion about rural versus urban hospitals," Kottel said, "and there were concerns in a tight budget year to find the funds for data collection."

The Brain Injury Association of Montana would like to see legislation passed in the hope it may provide a more accurate picture of aphasia sufferers in Montana. Maia Jackson of the Brain Injury Association puts it this way. "Studies haven't been done, there isn't funding for that. We don't have any information on Montanans suffering from the disease."

The Brain Injury Association of Montana isn't the only organization with limited information on aphasia in Montana.

The National Aphasiac Association compiles a nationwide list of resources and representatives in all 50 states. Montana has no representative (a volunteer position) and lists no resources on either list. It is the only state lacking entries.

Amy Coble of the National Aphasiac Association expressed her concern over the lack of resources for Montana. "It's unfortunate if someone from Montana is looking for help that we can't point them toward anyone in their own state. We don't like it."

One way that organizations like the National Aphasiac Association and the Brain Injury Association of Montana build resources is through funding, which requires data to justify need.

Rep. Kottel believes not passing this particular legislation may cost Montanans more in the long run. "In years in which there are tough times we need to spend wisely. Even though this bill would spend money, the department and hospitals need to be able to decide where to spend their money. You can't make these things up, you need data."

And while aphasia isn't at the top of everyone's reasons why data collection and funding are critical to Montanans, it might be if they suddenly found they couldn't read or speak.