TN Disability Day puts a face on tough issues

Broken Trust: Part of a continuing series
Stephanie Williams, 49, has a bright smile and a ready handshake, but cerebral palsy has robbed her of the ability to speak or care for herself. On Wednesday, Monica Sims told lawmakers about the devastating effects another round of budget cuts could have on her sister.

"We don't need any more cuts, and she doesn't deserve it," said Sims, 25, the mother of two small children who also is her sister's guardian and full-time caretaker — a job that used to come with a small stipend that the state has since cut back.

Sims and Williams were among more than 100 people with disabilities and their advocates who lobbied for more help from the Department of Intellectual and Developmental Disabilities as part of Disability Day on the Hill.

Already under fire for not providing adequate services to Tennesseans with intellectual or developmental disabilities, the department — at the request of Gov. Bill Haslam — has presented a budget that could cut even more next year.

Among the proposed cuts is a $7.4 million family support program that provides grants averaging $1,300 to about 4,500 families to support loved ones with disabilities in living at home — a program that advocates note is far more cost-effective than institutional care.

Rachel Rogers, a 21-year-old Stratford High School graduate with Down syndrome, was among a group of young adults talking to lawmakers about her desire to live independently. Rogers lives with her parents, works part-time folding pizza boxes at Papa John's in Green Hills, but has dreams for her future.

"I want to be a songwriter and play guitar," she said. "I'd love to live with my boyfriend. I'm creative. But I need help to shop at Kroger, to cook and to clean."

A waiting list for services that would help Rogers now stretches to more than 7,100 people.

By bringing families face to face with lawmakers, advocates hope to "begin a relationship" and establish a "go-to person" on what does and doesn't work to aid Tennesseans with disabilities, said Sarah Harvey, program director for Tennessee Works Partnership. The agency helps young people with intellectual and developmental disabilities get jobs.

John Chase, 26, and his mother, Mary Ellen, traveled from Memphis to meet with Rep. Jim Coley, R-Bartlett, and Sen. Brian Kelsey, R-Germantown — one of more than 40 meetings Tennessee Works Partnership set up.

Specialists said John Chase, diagnosed with Asperger's syndrome at 4 years old, would never graduate from high school or hold a job. Chase not only graduated high school but also earned a bachelor's degree from Visible Music College and now works as a music archivist.

None of it would have been possible without the intervention of multiple therapists, psychologists and psychiatrists, his mother said. The Chases paid for services, but a bill being considered this year would require health insurance policies to cover screening, diagnosis and treatment of autism spectrum disorders.

"I will tell them my story of origin, tell them my accomplishments and allow God to do the rest," John Chase said.

"Hopefully," his mother said, "they will listen, and be moved to act."


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