Fighting For Special Needs Kids

Jade Moon
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Wednesday - January 24, 2007
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Sam (not his real name) is 10 years old, cute as a button and very bright. He also happens to be autistic. In order to learn and live effectively, he needs the help of specially trained people.

It’s a scary thing when you know your child needs something - and you just can’t get it. That’s a real fear for Sam’s mother, Sharon, and other parents of special needs kids. And it’s why so many of them fought back when they thought services for their children were at risk.

Here’s what happened. The Department of Education recently decided to take a look at the rates it was paying out to contracted service providers. These are the agencies and professionals who negotiate with and hire the individuals who work one-on-one with special needs kids. Costs had gotten out of hand, according to Debra Farmer, the DOE’s administrator for special education, because under the Felix Consent Decree the department was under fire to fix a lot of problems fast.

“Providers have set their own rates,” Farmer says, “and over the years the providers have set higher and higher rates.”

The DOE wants to rein in some of those costs by regulating what it pays the providers and the skills trainers for kids. That sounds reasonable to me on the face of it. Everyone benefits if the state is smart about how it uses our tax dollars. Right now the DOE shells out between $63 and $155 per hour to providers - for the same services. Farmer says they need to standardize the rates.

Trouble was, the DOE decided to take the lowest rate - $63 - and providers balked, saying they just wouldn’t be able to afford to work with the state. Trainers would look for better paying jobs elsewhere. The DOE, the providers said, would end up hiring cheaper, unqualified people. And that scared the parents.

Sharon Wong was one of them.

Sharon says when Sam was a toddler he would do odd things, like watch a fan spinning for long periods of time, or walk on his toes. She knew instinctively that something wasn’t right, “but as a parent I didn’t know anything. The thing that really concerned us was that he wasn’t speaking.” He was 18 months old and had only three to five words.

That was the beginning of what has been a long and sometimes exhausting journey of discovery for Sharon and her husband. They had to learn all about autism, then about how to get the appropriate services from the Department of Education.

When Sam goes to school he isn’t alone. He has skills trainers and aides to keep him focused on what’s going on around him.

“They take data on how well or how poorly he’s doing. If he’s not socializing they’ll prompt him. They monitor the conversation to see if it’s appropriate ...”

With all of that one-on-one training, something remarkable has happened. Sam is coming out of his autistic shell. He has even learned how to tell a joke, and that’s no small thing.

“Oh my god,” and here her eyes rim with tears, “he wouldn’t be where he is without the services. I don’t think he would be able to talk to anybody. He wouldn’t understand joking. He’s made so much progress. And it’s because of all of these services that he’s gotten.”

Sharon is fierce and intense when she talks about the need to continue. That’s because despite the progress he’s made, there’s still a chance Sam could become “stuck” or even regress if the services stop.

After hearing from providers and the parents and studying new data, the DOE reconsidered its initial numbers. But are the newer rates adequate to keep the system going? We’ll see. The providers have to submit their new contract proposals this week.

Sharon is hopeful. But she has learned never to let her guard down, and she has the fatigue lines under her eyes to show for it.

“You look tired,” I tell her.

“I am,” she says. “I’m always tired.”

Her son still has so many things to learn: how to converse, what behavior is acceptable and what’s not, how to look at things from other people’s point of view. For those who don’t see that as a school’s responsibility, I strongly disagree. Socialization has always been part of a rounded education. If he doesn’t get the proper coaching the probability is that he would not be able to lead an independent life. And that has huge costs for society.

“My son - he’s not done yet,” Sharon says, her eyes welling up again.

“But he can learn. Now he’s at this point where I have a lot of hope for him. I don’t think it’s unreasonable. I see he can go to college. He can get a job, maybe even get married. He can have a normal life.”

A normal life. It’s such a simple yet profound wish, it breaks my heart. It is the tantalizing future Sharon is finally able to see for her little boy if - and only if - he gets what he needs now.

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