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News › Parents cite failures and frustrations with autism program
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Parents cite failures and frustrations with autism program
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Posted by sylvia on Monday, August 03, 2009 (09:01:59)
Wilton BulletinBy Jeff Yates
With a mix of tears and remonstrations, parents of children with autism called on the schools to turn a new page in what they see as the sad saga of Wilton’s autism program.
More than 125 people flooded into Middlebrook School’s auditorium Wednesday night — a mix of parents, their friends, neighbors and supporters, and a large contingent of autism professionals from the Wilton school system — to speak with members of the Board of Education during a public hearing they were only able to get by force through a state statute petitioning process.
Several parents expressed exasperation at the set of 11 rules the Board of Education chose to adopt for the hearing — primarily the rule that no speaker could have more than three minutes of speaking time, which confounded the parents’ plan to project a PowerPoint presentation on the screen set up on stage. (The full PowerPoint presentation “Building a System-Wide Autism Program that Works” can be viewed by clicking the slideshow link on the main page.) The schools did offer to receive hard or electronic copies of all presentations and other documentation.
While most of the parents directed their comments at the past problems, frustrating roadblocks and school failures they said they faced with their own children’s programs, many chose to speak of a program that could be, one in which parents were encouraged and allowed to participate fully in an open and non-confrontational dialogue. They set forth a school system in Long Island, Half Hollow Hills, as a model for an effective autism system.
“I have three typical children who have benefited greatly from our superb school system,” said Laurie Collins of Old Wagon Road. “The problem is, I have four children, and I want all of them to be benefiting from our superb school system, and all of them to reach their full potential.”
Parents directed their attacks at what they saw as the confrontational and often litigious relationship with school administration, taking care to separate the many paraprofessionals and aides in the program, who they said were often achieving amazing results despite the lack of training and support from the schools.
Among their main concerns were:
• The lack of due diligence in hiring consultants and professionals
- One parent alleged that Dr. Judy McCarty, a consultant, was hired without a contract and has received between $350,000 to $400,000 this year.
- He provided invoices of her bills and others in a bound, two-inch-thick packet the parents presented to board members that night.
• The revolving door of employment in the autism program
- Parents spoke of their children having up to five different behavioral analysts — who help devise the individual autism programs — in a matter of three years.
-Some said their children’s entire autism teaching team left the schools over the course of one summer.
• The lack of cooperation from the administration
- Parents said promises were made and broken
-According to parents, the gag order on paraprofessionals, preventing them from speaking with parents of the students they serve, continued to be an ongoing problem.
• Lack of follow-through on the 2006 Autism Study
- Parents said the study called for a cohesive vision and plan, but alleged no such plan has yet to be put in place.
For Jill Ely of Sturges Ridge Road, the parent of an autistic 20-year-old who was at the center of a controversy over the schools’ padded safe room — a room that a Bulletin investigation in August 2006 found had never been inspected by the fire marshal, nor received a certificate of operation from the Building Department — her goal was to never have another parent go through what she did.
“At no point was I told that he would be put in a room with a closed door that was held shut,” she said. “As an effect of Wilton’s ineffective and destructive program, he regressed and became a behavior problem.”
In contrast to parents who spoke of the frustrations and failures of Wilton’s system, others, parents who had chosen to pull their children from the school, or had — often through litigation — forced the schools to allow their privately-hired professionals into the school to provide services, spoke of the gains their children had made. They asked the schools to search out the opinions and advice of these professionals in the field who have made such progress — something parents said was specifically avoided in drafting the 2006 Autism Study — to help make Wilton’s program more effective.
Jodie Meyer of Old Kings Highway, a mother of two children with autism, said she had sought the outside help of a professional behavioral services firm. Her children, diagnosed between the ages of 18 and 24 months, are now 8 and 7 years old, she said.
“Lynn has a proven track record. Her company does. It’s data driven, it’s science based. You can’t beat the numbers,” she said of her behavioral analyst. “My oldest has since lost her diagnosis... autism is not curable... but you can recover.”
But the struggle to keep those gains in the school system was highlighted by Pam Cole, who’s friend’s child has autism. Ms. Cole said her friend had been able to get a private consultant into the schools to work with her child, a service that is making gains.
“It’s unbelievable to me that they’ve had to battle every step of the way,” she said. “The administration seems to constantly fight with the family to push this consultant out.”
But for some of these parents who have pulled their children from the system, the ideal would be to have them back in the schools, side-by-side with their friends and typical peers. That goal, they said, can only be accomplished if the schools change their ways and meet them halfway.
“There’s just too much uncertainty, too many aides coming into their lives,” said Nancy Jack of Liberty Street of why she took her child out of the schools. “We’d like to be able to come back to the school one day, but we have to trust them first.”
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Posted by sylvia on Monday, August 03, 2009 (09:01:59) (893 reads)
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