Tennessee Kindred Stories of Disability

A collection of stories from individuals with disabilities, families, friends, and disability service providers in Tennessee



Mark (42), Autism, Davidson County


"I feel like if we got waiver services today it would be like being let out of prison. "

  • A Parent's Perspective
  • Posted on 2/25/2013

 

Mark was born in 1970. By the time he was 2 or 3-years-old, we knew something was different about him, but we didn’t know exactly what it was. I just knew he didn’t play like other little boys played and he wasn’t interested in being with the other kids in the apartment building where we lived. He preferred to play alone.

When he was 5-years-old, he entered the public school system.  I didn’t expect things to go perfectly, but we needed some help in finding out what was wrong. We felt this was the place to start for some professional help. He was evaluated by the school psychologist and was given a label of classic autism. Mark went through the Nashville public school system in special education until he was 22-years-old.

After graduation, he entered a sheltered workshop where he stayed for 5 years. The workshop wasn’t enough for him. He wanted a “real” job and through their supported employment program, he was able to do just that. With the help of a job coach, he was able to obtain his first “real” job as a bus boy at Shoney’s where he worked for 2 years. He decided he wanted to find a different job and he chose Kroger for his next employer.

He went to work at Kroger and is still there today. He is in his 12th year as a courtesy clerk and we hope he can stay there until he retires. Mark had always wanted to live independent of us when he grew up and we felt this was something he would be able to achieve with the right help.

While Mark was at the sheltered workshop we placed him on the waiting list for residential services. Since he was young at that time, we weren’t ready for him to live anywhere else but at home. So, he was placed in the deferred category. That was approximately 15 years ago. Within the last 5 years we were able to get him moved from the deferred category to the active category because of our age and health. His father is in his mid 70’s with many health problems, and I am in my late 60’s with health issues as well. We have no one else who can care for Mark should something happen to us. We feel very isolated a lot of the time.

We always thought there would be a place for Mark when the time was right and when we needed residential placement. We had no idea what we would be facing today.  We have just about given up on ever getting residential placement. I have no idea what will happen to Mark when we are no longer able to care for him. It would be best for him if we could find a way to ease into a residential placement. It’s often hard for people with autism to transition into new settings. I would feel more at peace and he would feel more at peace if we could help him transition to a new home while we are still here. During the past several years, we have had a number of case workers assigned to us but it is meaningless to us now. Nobody can help us. Year after year, all we ever hear is there is no funding. Will there ever be funding? It is so unfair to us and to him. We need residential services now. I feel like if we got waiver services today it would be like being let out of prison. 

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