Tennessee Kindred Stories of Disability

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



Whitney (22), Developmentally Delayed, Coffee County


"Debi says she is scared about what is going to happen when she is not around to care for Whitney. "

  • A Student interview of parent's Perspective
  • Posted on 2/25/2013

 

Whitney is 22-years-old and has a diagnosis of developmental delay. She loves listening to music and playing on her iPad.  Although she can be quiet, Whitney is friendly and outgoing, especially when she recognizes somebody in her community. According to her mother, Debi, some of Whitney’s biggest challenges are in the areas of communication and mobility. Whitney currently lives at home with her mother and stepfather.

When Whitney was 13-years-old, the director of special education in their hometown suggested that Debi put Whitney’s name on the wait list to receive waiver services. While the family is on the wait list, they are currently doing all they can to ensure that Whitney is happy and healthy.  Debi currently works in order to pay for daily expenses.  However, she had to reduce her work hours recently and take a cut in pay to have more time to take care of Whitney. Debi says the family “is just making it one day at a time.”

Currently, Whitney does receive some money that helps the family pay for her expenses.  All of her monthly Supplemental Security Income (SSI) currently goes toward paying for her day center costs.  If Whitney was able to receive services from the state, there would be money to access services and supports to improve Whitney’s life. The family could also use the money to pursue activities that interest Whitney and that would help her in the future.  The money might also go toward hiring someone to care for Whitney so that Debi could work additional hours. The money might also go towards paying for housing expenses so Whitney could begin to transition to another residential placement and live more independently.

Debi says she is scared about what is going to happen when she is not around to care for Whitney.  Specifically, Debi is worried about who Whitney would live with.  Another concern that Debi has relates to residential placements.  Debi mentioned “the longer she lives at home, the harder it will be to transition later on.”  This is a valid concern because Debi wants the best for Whitney and wants to make life as easy and convenient for her as possible, like any mother would.  If Whitney were to begin receiving services, many of the fears and concerns that Debi has for the future could be put to rest.  Debi would be able to pay for dependable caregiving for Whitney and also would be able to pay for a future residential placement for her that would continue to last even if Whitney’s family were no longer able. 

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