Group spreads message on speech impairments

By ANGELA CAVE- | Comments: 0 | Leave a comment

Stroke and brain injury survivors may struggle to be understood in conversation, but their message through a charity at The College of Saint Rose in Albany is being heard loud and clear.

Members of a CSR-based support group for people with neurogenic communication impairment took over an existing fundraiser walk two years ago. Through the "Moving Message fund" walk, they raised $3,000 toward a memorial scholarship for graduate students in the communication sciences and disorders program.

"That really kind of spurred us on to wanting to do something bigger," said Julie Hart, director of traumatic brain injury Medicaid waiver services at CSR.

She facilitates the support group, which operates out of the Pauline K. Winkler Speech-Language-Hearing Clinic in CSR's education school. The clinic serves adults and children with speech sound, phonology, language, voice, fluency and hearing disorders.

In September, group members staged a marketing blitz before hosting the second Moving Message fund walk, which attracted 262 participants and raised $14,000. The money will cover long-term speech therapy for clinic patients, which is not usually covered by insurance or Medicaid.

Another goal of the Moving Message fund is to reduce the stigma associated with aphasia, an acquired communication disorder that impairs a person's ability to process language.

Affecting about one in 250 people - more than Parkinson's disease, cerebral palsy or muscular dystrophy - aphasia impairs the ability to speak and understand others, but does not affect intelligence, according to the National Aphasia Association.

"I don't think a lot of people are aware of it until it happens to someone in their family," Ms. Hart said.

People often assume that those with distorted speech have developmental delays.

"These folks get treated differently," Ms. Hart said. "When there's too much pausing or too much slurring, you get written off as less intelligent."

In reality, people with aphasia or neurogenic communication issues are affected by strokes or traumatic brain injuries, which affect 1.7 million people - including children and young adults - in the U.S. each year. Speech and language abilities can improve with therapy, but the stigma can cause isolation, depression and more health problems.

Those interacting with a person who has a disorder should speak to the individual instead of his or her aide or family member, Ms. Hart noted: "Even if they have a reduced ability to understand, they should be addressed."

If it's hard to understand the individual, ask for repetition, spelling or different word usage, she said. "It actually shows more respect that you would want to understand that person."

The ultimate goal, Ms. Hart said, is to help the individual become as independent as possible, while maintaining his or her dignity.

"These are people that have a lot to contribute," she said. "Sure, they need support to do that - but don't we all need support to do certain things?"

Send donations for the Moving Message Fund to Julie A. Hart, The College of Saint Rose, Lally School of Education, Box 15, 432 Western Ave., Albany, 12203. For information, call 485-3944.[[In-content Ad]]