Health Care Story of the Week - 12/2/09

Vicie loves children, and has adopted three special needs children, including her son Trevor. Trevor is extremely medically fragile, but he loves sitting in laps and being snuggled. He is non-ambulatory and non-verbal, but he loves listening to music. Trevor uses an overhead lift system to move and a percussion vest to help him breathe. Still, Vicie takes Trevor and his siblings out to the carnival and car races to enjoy their favorite activities. Trevor had been receiving full-time nursing care for three years. However, in July 2008, his TennCare home nursing care was unexpectedly and suddenly reduced by more than half. Taxpayers have already paid HMOs to provide Trevor the care he needs.

Frustrated but unwilling to take “no” for an answer, Vicie called TJC for help. TJC wrote a letter asking TennCare to provide Trevor the nursing care that his doctor had prescribed. Days later, Trevor’s care was reinstated and Vicie could breathe a sigh of relief. In her fight for Trevor’s care, Vicie also spoke for many other parents struggling to obtain care for their children.

Vicie also asked for TJC’s help with a TennCare policy that appeared to prevent her from leaving the house on short errands while the children were at home with their nurses. Vicie was faced with having to transport her three children, all of whom are wheelchair-bound, with her on the simplest trips to purchase groceries or to stop by the library – or not go at all. TJC wrote to TennCare about this apparent violation of the Americans with Disabilities Act. The state immediately clarified this rule so that Vicie and other parents like her are not forced to be homebound.

Vicie’s greatest hope for all children is that they can “enjoy life, live to their fullest potential, and not be held back because of disabilities.” She said it was a huge relief to have Trevor’s nursing care back, and to have the freedom to leave her home. “TJC is a lifesaver,” she said. “The folks I worked with at TJC really care about our family and will do what it takes to make sure my kids get the care they need.”