Tennessee Kindred Stories of Disability

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



Jackson (4), Autism, Rutherford County


"The one service [ABA] that has been deemed “optional” and thus not eligible for coverage is the one service most vital to Jackson’s progress."

  • A Student interview of parent's Perspective
  • Posted on 2/26/2013

 

Jackson is four-years-old.  He lives with his mother, father, and his younger sister Stella.  When Jackson’s mother, Jessica, had some initial concerns about Jackson’s development she approached their pediatrician. She voiced her concern about his speech delay. She mentioned that he would play with toys in atypical or inappropriate ways, that he would repeatedly switch lights on and off, and that he would not play with other children. At first, she was told that he was probably just experiencing delays, but eventually, he did receive a diagnosis of autism.

After he received his diagnosis, Jackson qualified for services through Tennessee Early Intervention Services (TEIS). He began speech and occupational therapies, and once he turned three, his intervention intensified.  In addition, Jackson spent eight hours in Applied Behavioral Analysis or ABA every week. He made a lot of progress with his speech, and now he no longer qualifies for speech therapy. Jackson has improved socially as well.  Behavior is still something of an issue for Jackson.

He has many positive qualities.  He is very kind, sweet-natured, and innocent. He is very bright.  He has a lot of drive and motivation to complete tasks he deems worthwhile.  Complaining is not in his nature, and he does it very rarely.  Jackson’s parents are very proud of the progress he has made.

One key to Jackson’s progress has been Applied Behavioral Analysis.  His parents have deemed it so important that they solicit and pay for the service themselves.  It is seen as an “optional” service, but the mother considers it a vital service for her family and for others.  She thinks it is important because it teaches parents how to deal with various behavioral situations.  Specifically, the parents have learned how to respond when Jackson has meltdowns.  In these meltdowns Jackson whips into a frenzy where he is kicking, scratching, and hitting.  ABA has taught the parents how to better handle these meltdowns.  Additionally, the ABA has proved instrumental in potty-training Jackson.  His parents and his analyst worked with him for eight hours over the course of two days.  By the end of these two days Jackson was potty-trained.

However, ABA is ongoing and it is expensive.  Jackson attends ABA for eight hours every week.  The charge for this therapy is $60 an hour.  Insurance does not cover it at all.  That means Jackson’s parents have to come up with nearly $2,000 out of pocket every month just for Jackson’s ABA.  This is the biggest and most difficult service obstacle that the family faces.  The one service that has been deemed “optional” and thus not eligible for coverage is the one service most vital to Jackson’s progress. Tennessee is 1 of 12 states that does not have a mandated autism insurance reform law where the state pays for all autism therapies. The family continues to struggle to provide Jackson the services that he needs and deserves to reach his full potential.

Jackson also benefits a lot just from being in school.  He attends a preschool program for children ages three to five.  There are ten children in his class; half of them have special needs and the other half are typical developing children.  The children are integrated, and being around other children has been very helpful for Jackson. 

An educational goal is for Jackson to eventually be placed in a general education classroom for the entire school day.  He may always be a year behind socially, but his parents think he is bright enough to do well academically in the general education classroom. 

Eventually Jackson’s parents would like to see him attend college.  They think this is a real possibility for him.  Jackson’s parents also want him to have a job and his own life.  They see these things as attainable goals for Jackson.  His mother says that Jackson is “like a sponge” because he “just soaks everything in.”  That ability to learn and grow will go far to help Jackson achieve his goals.  With the right interventions, Jackson should be able to live his life the way he wants, full and independent.

           

 

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