Alabama still doesn't require insurance companies to cover treatments and therapies necessary to assist children with PDD-NOS or other autism spectrum disorders. If you want to help, you can contact your congressman (or senator or representative or whatever) and tell them how important it is to you that the children you know with autism be able to have equal coverage under insurance. You are also welcome to donate to a fund I'll be starting soon for Aidan to be able to try to get him into as many therapies as possible while they'll still be beneficial to him. This article is very informative:
Do you know Jack (and Jill)? State mandates coverage for autism
At first, Jack's parents thought their little Lego-building genius had a hearing problem. So, they brought him to audiologists. The doctors plopped headphones on the toddler, turned on a set of mechanical clowns who shook tambourines, played drums and clapped.
The clowns resembled the "It's A Small World" dolls at Disney World. Jack tilted his head in the direction of the sound, but his eyes often looked passed them -- wandering to the scenery behind the clowns, to a seam in the wall or to some colorful detail, the zigzag stitching in their costume.
The good news was that Jack did not have a hearing problem. It was something else. Something that took another two years and other specialists to diagnose -- pervasive developmental disorder, not-otherwise specified. PDD-NOS.
The diagnosis from the Yale Child Study Center when Jack was only 4 went down hard on his folks. It was harder to accept a decade later with their feisty daughter.
In a note to her parents, the day care informed the couple that Jill "is always the last one anyone picks" when it comes to choosing teams. And that Jill "is oblivious" to other people's feelings, holds crayons with an awkward grip and has trouble forming letters, coloring pictures within the lines, even when she tries.
The evaluations of their children set Jack and Jill's folks back $9,200 and the therapy with a speech pathologist twice a week for seven years cost another $70,000.
Their insurance refused to pay a dime. The policy excluded autism services.
This couple was able to afford these services out-of-pocket. Having an evaluation early allowed them to gain special education services for both children.
Countless others aren't so lucky.
When families can't pay for these evaluations, children start out behind the eight-ball, and as they grow older, they drop further behind their peers because either their disabilities or the severity of them don't attract the attention of educators at the earliest point where offering them services will have the most impact.
The picture however for kids with autism spectrum disorders is about to brighten somewhat. Connecticut is joining a host of other states that mandate group insurance plans pay for autism spectrum disorder evaluations, prescriptions, physical, speech and occupational therapy.
That shouldn't supplant a school's obligation to provide those services to students. But it's possible that given the tight budgets that everyone, including school systems, operate on, it's conceivable that it may. Schools might balk at continuing to pay for these services.
"While there are some very on top of it school systems when it comes to autism, that is not the norm," says Hal Gibber, executive director of Favor Inc., an advocacy organization for people with behavioral, developmental and mental health issues.
"Most of them will want to do as little as possible until somebody requires them to do more," Giber says.
And that shouldn't happen here when this law has the potential of making the difference between giving kids with autism spectrum disorders the tools to succeed in the neuro-typical world. "Schools often ask the question what is 'educational'?
They are mandated to provide for children's needs in so far they these needs are educational," says Dr. Ami Klin, director of Yale Child Study Center's Autism Program.
"For children with autism spectrum disorders, we've been arguing -- and many school districts agree -- that education is more than reading, writing and mathematics. It's a child's ability to succeed in aspects of daily living -- to navigate social interactions, communications and move through and engage in everyday life in their community."
Making an autism diagnosis is tricky -- even for the trained medical professionals. At Yale Child Study Center, teams of neurologists, psychiatrists and speech pathologists meet with youngsters for two days straight and ask parents, teachers and caregivers to complete a two-inch thick questionnaire, surveying a child's development, medical history, academic and social interactions.
It takes hours for parents to complete, and even longer for Yale to analyze.
These days, Jack sometimes makes honor roll at his high school. He works hard for every A or B he earns. The only subjects that come easy are algebra and calculus because those are subjects where there is no gray to Jack. Something is right or wrong. And he doesn't have to read his teachers' faces or his fellow students for the non-verbal cues, like a raised eyebrow, a smile or a grimace.
At home, Jack's nickname is "The Capitalist," owing to his ability to negotiate high baby-sitting fees, impose an early return surcharge and devise novel, legitimate ways of making money.
For her part, Jill, a fifth-grader, is reading the fifth Harry Potter book. When she meets somebody new or goes on a trip, her parents have learned to "rehearse" what she can expect to see or do. Consequently, they repeat themselves a lot. The upshot is that eases anxiety all around. And it gives Jill ideas for conversations.
MariAn Gail Brown, a columnist for the Connecticut Post, can be reached at mgbrown@ctpost.com
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