Parents: Autistic Kids Ill-Served 

Four Charlotte families with autistic children, frustrated by having their proposals shot down by the Charlotte Mecklenburg School Board, are suing CMS, claiming the school system isn't providing adequate therapy resources. The lawsuit also aims to implement what the parents say are much-needed changes in the school system's current autism therapy program.Although autism is one of the most common developmental disabilities affecting an estimated 1.5 million people in the US most professionals in the medical, educational, and vocational fields are still unaware of how autism affects people and how they can effectively work with the autistic.

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."

CMS offers services and therapies for disabled children via the Exceptional Children department, whose officials provide various support services to school staff members. CMS recently implemented a new autism therapy program known as "Best Practices," which uses a variety of different approaches. This change drew heavy criticism from some autism experts and parents, who say that using a mishmash of approaches without a strong philosophical basis or consistency in teaching strategies will confuse a child with autism, and ultimately slow progress. In addition, they say that teachers charged with running these classes lack proper training, which can result in the child having uneven development toward a variety of long-term goals.

""Best-practices' means teachers in charge of autistic classrooms are expected to teach each child in the method in which they learn best," said Alyson Shaffer, an educational consultant who helps set up and monitor therapy programs known as Applied Behavioral Analysis (ABA). "So if you have six kids in your classroom, you might have six different therapy methods. Speaking as an educator, that's very difficult to do. It's very tough if you're using a different philosophy with each child."

This past summer, a group of parents made a presentation to the school board suggesting they replace Best Practices with an ABA program.

"It's a program that's been proven to work," says O'Neill. "Our intention was to develop six ABA classrooms in Charlotte, which could benefit all children with developmental problems in Mecklenburg County. When CMS denied the proposal, we served them with papers right then and there. We were backed up against the wall."

"We proposed CMS implement an ABA program for the next three years, and then we could reassess," adds Tucker. "Various other states have used the ABA program to great success. Why won't CMS do it? They have $66 million in their EC budget; they just need to reallocate funds. There's a lot of money in there and it's not reaching our special needs children."

"What we hope to accomplish through the lawsuit is a free, appropriate public education for these students, as guaranteed to them by the law," says Melanie Byrd, an attorney with the Children's Law Center, who is in charge of the case. "And that's an education that's specially designed for each child at no cost to the parent that will allow the child to succeed in school and be educated along with their peers to the maximum extent possible. And with these children, the best specially designed instruction is the ABA methodology. Without this therapy, it really delays any progress they make. Unfortunately, with CMS's current Best Practices program, since there is not a specific methodology in place, the teachers are not adequately trained. They're just trying to piece together different approaches."

Jerri Haigler, CMS Executive Director for Public Information, says she cannot discuss the specifics of the lawsuit, but counters that there are several different methodologies for teaching students with autism, and national research has shown that there's not one program that is the be all and end all.

"We are taking the best methods from various methodologies and using what works best for each individual child," Haigler says. "We're using a lot of professional development for our teachers in looking at the different methodologies and determining what would be best."

The case is scheduled to go to court November 7.

Prior to the current "Best Practices," program, CMS provided TEACCH (Treatment and Education of Autistic and Communication-handicapped Children) therapy for children with autism and related communication disorders. TEACCH was developed at UNC-Chapel Hill in the 1960s. In 1972, the state established three TEACCH centers to offer diagnosis and therapies, and soon TEACCH became the dominant therapy for autism in NC, with regional centers opening all across the state, including Charlotte. It was integrated into the CMS system in the mid-80s.ABA therapy uses a systematic approach to teaching complex skills through the use of positive reinforcement and motivation. Unlike the group setting of TEACCH, ABA is a program of intensive one-on-one teaching. It is based on research first published by B.F. Skinner in 1938, and later expanded upon by many others, most notably Dr. O. Ivar Lovaas, a professor of psychology at UCLA. An ABA treatment program is designed for one child, using the services of several paraprofessionals under the direction of an ABA expert. Practitioners say this therapy is far more progressive than TEACCH, and has been proven to be the most effective. The parents interviewed for this story report that their children have shown marked improvements since they started ABA therapy programs at home.

"If you look at all the statistics, ABA is proven to work," says Tucker. "If you have intensive ABA therapy, the chances of a child improving substantially in the first three years and being mainstreamed into the regular school system increase dramatically. And that's my goal -- for my child to be more independent, socially adaptable, be able to communicate, but most of all, to be happy. A lot of these kids, including my son, can't speak. It's like being in jail. Their frustration level is so intense, and that's where a lot of the behavioral problems come from."

"Compared to other counties and states, we're definitely lacking," said Shaffer. "There are so many families that are doing home-based ABA programs. When their child reaches school age and still needs ABA, what are they going to do? There are no ABA classrooms. CMS is simply not providing it. They (CMS) might argue that point and maintain that they're training the teachers, but it's just not happening."

Of course, for every study touting the benefits of one therapy, there is a contradictory study claiming another one is superior. Experts agree that each person with autism is an individual, and that it's a mistake for people to become emotionally wedded to one program if it blinds them to the possibility of other treatments. Most experts agree there is no "cure" for autism. However, many of the symptoms lessen as the child ages; others may disappear altogether. With appropriate intervention, many of the associated behaviors can be positively changed, even to the point, in some cases, that the child or adult may appear to no longer have the disorder.

While the overall expense will vary depending upon what service provider you have, how many tutors you hire, and the hours of therapy, the average ABA home program can cost anywhere from $25,000 to $60,000 a year. Consultants can cost anywhere from $80 to $150 an hour, and therapists charge anywhere from $8 to $18 an hour, depending on their training and the program. Making the financial burden heavier is the fact that most insurance companies don't cover autistic-related therapies. Moreover, state budget problems have delayed or cut what little funding there was, including Medicaid and other public services."Many insurance companies see autism therapy as an educational service," says Shaffer. "They recognize occupational therapy, physical therapy and speech therapy, but not educational. It's kind of warped. If you can't educate these kids the way they should be educated, it's going to end up costing the state more money in the long run because these kids are going to end up in group homes and assisted living programs."

Christa Tickle and Danielle Powers are two parents who are dealing with the high costs of caring for their autistic children.

"We spent $33,000 last year, which includes the cost for consultants and therapists," says Tickle, whose three-year-old son, Pierson, was diagnosed with autism about 18 months ago. "We exhausted our bank accounts, sold one of our cars and borrowed from family members. We've basically used every resource we had, and have just about run out."

Danielle Powers' son Jason, 3, was diagnosed with autism about six months ago. She, too, has been hit hard by the financial burden of therapy. "We've sold our cars, I've delivered pizzas, newspapers. We'll go bankrupt if that's what it takes."

Folks like Powers and Tickle are both looking to proposed legislation being championed by state Rep. Martha Alexander, D-Mecklenburg, to improve insurance company coverage. The legislation is currently in subcommittee.

Although Tickle and Powers are not part of the lawsuit against CMS, they are in the process of starting a non-profit organization in Charlotte that will help fund treatments and therapies for autistic children. For more information, call (704) 392-2468, or go to: www.ticklefoundation.org. { if (item.parentWrapperClass.trim() === '') { var componentElement = jQuery(item.componentHtml); } else { var componentElement = jQuery(`

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