Health Care Story of the Week - 3/4/10

John and Sue have spent the last 20 years helping their son Jonathan reach his maximum potential. Jonathan suffers from Asperger’s Syndrome. This means that when medicated Jonathan has a nearly normal IQ but suffers from many of the debilitating characteristics of Autism. His disability prevents him from being able to socialize with other people and make sound decisions. At the age of 24, he has the functional IQ and emotional maturity of a young boy.

Sue, a BS Home Economist and certified teacher, gave up her career and dedicated herself to taking care of Jonathan. When Jonathan completed secondary school at age 20, John and Sue began searching for a long-term solution for Jonathan. They had heard about a special Medicaid waiver for the mentally retarded, but were then told that Jonathan did not qualify because of his normal IQ.

John and Sue then heard about a vocational rehabilitation program for people with neurological problems. They were then told that Jonathan did not qualify for that program because his functional level was too low.

John and Sue were determined that Jonathan was not going to fall through the cracks created by the bureaucracy of narrowly defined government programs. They did not give up.

The family eventually learned of a residential treatment facility that could treat Jonathan’s behavioral problems and improve his social functioning. They asked TennCare to pay for this treatment in the hopes that Jonathan would be able to go from the treatment facility to a group living environment. Without it, he would never make it in that type of living arrangement.

TennCare refused to pay for the treatment. The family appealed. They found a pro bono attorney to help them with the appeal. That attorney contacted TJC for advice on how to handle the appeal. TJC helped the attorney, and the John and Sue were able to get Jonathan the treatment that he needed.

The story does not end there, however. Despite the fact that Jonathan’s doctors do not think that he is ready to leave residential treatment, TennCare has repeatedly tried to stop paying for Jonathan’s care at the residential treatment facility. John and Sue are persistent and keep appealing to make sure that Jonathan receives treatment for as long as he needs it.

John and Sue are also still tirelessly searching for a long-term placement that will meet Jonathan’s needs, but will keep him in the community once he is ready to leave the residential treatment facility. Jonathan cannot be left unsupervised for his own safety and the safety of others. Finding a place for him to go after he finishes residential treatment when there seems to be no place for him to go is the next mountain that John and Sue are climbing to help their son.