Families of people with autism face dizzying amounts of often-conflicting information in trying to determine the best treatments and services. If that's not enough, the suggested therapies are prohibitively expensive, at times mired in red tape, and usually not covered by insurance or offered through state-funded programs. The result can wreak havoc on a family's finances and peace of mind.
Many parents of autistic children struggle with these issues, but some Charlotte families also took a proactive approach to their children's care, thoroughly researching the disorder and exploring the best solutions. It was such due diligence, they say, that led them to file suit against CMS.
For new parents, there are probably few experiences more exciting and joyful than watching their son or daughter take those first few wobbly steps, or shape those nonsensical baby sounds into actual words. But imagine if during those early years your child failed to develop normal social and verbal skills. Moreover, imagine if he or she started to exhibit odd, and at times aggressive and self-injurious behavior. It's a stressful and worrisome experience that folks like Teressa and Mark Tucker know about all too well.When Teressa gave birth to her son, Cameron, four years ago, everything seemed fine. But once Cameron turned two, the couple noticed something was wrong.
"At first we though Cameron was deaf," Teressa Tucker says. "He wasn't responding to our voices. We could even yell from across the room or clap, and he wouldn't have any reaction." Cameron also began to stare obsessively at certain objects for extended periods of time.
For Marla O'Neill, her first warning sign came when her then four-week-old son, Michael, had no reaction when the house's smoke alarm went off. He also didn't want to nurse, and didn't like to be held.
"Developmentally, he continued to progress," says O'Neill. "He started to crawl, and even say a few words. But then all speech stopped and he basically turned into a catatonic child. He would sit and stare for hours."
Both children were diagnosed with autism, a complex developmental disability that typically appears during the first three years of life. Autism is a neurological disorder that affects the functioning and development of the brain, especially in the areas of social interaction and communication skills. Although there's no single specific known cause for autism, current research links autism to biological or neurological differences in the brain. In many families there appears to be a pattern of autism or related disabilities -- which suggests there's a genetic basis to the disorder -- although no gene has been directly linked to autism. The disorder is four times more prevalent in boys than girls and knows no racial, ethnic, or social boundaries. The disorder makes it hard for children and adults with autism to communicate with others and relate to the outside world. Persons with autism may exhibit repeated body movements (hand flapping, rocking, head banging), unusual responses to people, or attachments to objects and resistance to changes in routines.
Struggling with the heartbreak, financial difficulties and uncertainty that come with autism was bad enough for four Charlotte families. The last straw came when the school board refused to change its program for autistic children."The sad part is that a lot of counties and cities look to Charlotte as one of the leaders in the state for education," says O'Neill. "But in terms of exceptional children, North Carolina lacks a great deal. Our children can learn; they just need to be given the opportunity. The goal of our group is to be pioneers for other parents who don't have the stamina to fight the system. So many kids could benefit from this."
"In my opinion, CMS doesn't know what their right hand is doing from their left hand," says Tucker. "They need to do some serious house cleaning. There's a lot of available money that's not reaching children with special needs. If we're able to help these children be productive members of society, it's going to save the state money in the long run they won't be living in homes or institutionalized. It's a simple black and white issue. North Carolina is simply behind the times."