Friday, January 22, 2010

The Hamilton Spectator article about Delanie discharge

Autism treatment ruling devastates Hamilton dad


The Hamilton Spectator

(Jan 22, 2010)

A Hamilton father who fought for equal treatment for both his autistic daughters and lost says he is devastated and has nowhere left to turn.

Paul Ceretti learned earlier this month that the Superior Court of Justice upheld a decision by the local autism program to discharge one of his seven-year-old twin daughters from a specialized therapy program.

Ceretti's daughters Delanie and Mackenzie have been in the intensive behavioural intervention program in Hamilton since March 2007, when they were four.

Ceretti said Delanie was thriving on the program. However, an independent reviewer concluded she should be discharged because she wasn't showing "meaningful improvement."

Ceretti took the case to court but the court ruled the program followed proper procedure in the assessment and that the decision to discharge Delanie was reasonable.

Ceretti said he is now living a parent's nightmare -- watching one daughter progress while the other falls behind.

"Mackenzie will still receive it and because it's in-house, we have to sit and watch as one daughter gets help and the other sits there and does nothing," Ceretti said.

He was told there are school-based programs available for Delanie.

"I went to the school and they couldn't guarantee she would even have a full-time EA (educational assistant)," he said.

"Delanie isn't just falling through the cracks, they're pushing her through it."

Parents with autistic children say the court's decision was a "devastating blow" for all families.

"I am sad for Paul and sad for the implications this has on the autism community at large," said Laura Kirby-McIntosh, co-founder of the Ontario Autism Coalition.

Provincewide, there are more than 1,500 children on wait lists for intensive behavioural intervention therapy, a highly specialized treatment that, if funded privately, costs $70,000 a year.

At the Hamilton-Niagara Regional Autism Intervention Program, there are 140 children on the list who can wait two years, said Kathy Pierce, clinical leader with the program.

Pierce said the program developed standards of practice three years ago as a way to measure a child's progress.

"We wanted to make sure children were benefiting," she said.

Pierce said a clinical panel was set up by the Ministry of Children and Youth Services to establish benchmarks for programs. That work is done but has not yet been implemented.

Paris Meilleur, spokesperson for the minister, said the government is conducting an "internal review" of the benchmarks before they are implemented.

Parents, including Kirby-McIntosh and Ceretti, allege those benchmarks are simply a way to push children off long wait lists.

"You can't use one standardized test for all these children because their range is so different," Ceretti said.

ddavy@thespec.com

905-526-3317

2 comments:

  1. Dr. Alfred Tomatis, a French otolaryngologist, is recognised as the modern day originator of sound or music therapy. In the early 1950's he developed an effective therapy method using altered music to treat conditions such as auditory processing disorder, dyslexia, attention deficit disorder and autism. Another French doctor, Dr. Guy Bérard, developed a similar method, Auditory Integration Training (AIT), which has found many followers in the USA. From personal experience I know that many clients report improvements in understanding, speech, balance, behaviour and emotional well-being after just two or three weeks of daily sound therapy.

    Sensory Activation Solutions (SAS) is an organisation with Centres in the U.K. and Turkey that provides a unique service for children and adults that face learning or developmental difficulties. When the established educational, psychological or medical services fail to provide adequate support, the SAS methodology often can provide practical solutions that result in noticeable improvements in daily life.

    You may be interested to check out their Free Sound Therapy Home Programme. Their Auditory Activation Method builds on the pioneering work of Dr. Tomatis and Dr. Bérard and has been specifically developed with the aim to improve sensory processing, interhemispheric integration and cognitive functioning. It has helped many children and adults with a wide range of difficulties, ranging from dyslexia and attention deficit/hyperactivity disorder to sensory processing disorders and autism. It is not a cure or medical intervention, but a structured training programme that can help alleviate some of the debilitating effects that these conditions can have on speech and physical ability, daily behaviour, emotional well-being and educational or work performance.

    There is no catch, it's absolutely free and most importantly often effective. Check it out at: http://www.sascentre.com/uk/uk_free.html.

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  2. Stefan: a quick google search has shown me that you post formulaic comments on many parents of disabled children's blogs, yet the search also provided no peer reviewed articles on Sensory Activation Solutions, or your organization.

    Maryna:
    Thankyou for your blog, and your wonderful links. I am an Mom with a child on the spectrum , too. :)

    ReplyDelete