The Fight’s not over till the battle is lost….

When you have a son or daughter with a disability, no one knows what they go through better than you; their parent or guardian. I have three children who were diagnosed with dyslexia. My eldest son, Gary was diagnosed at the age of 10 which is quite late for such a diagnosis. Normally dyslexia is caught in children much earlier. He was diagnosed through NEPs in third class of Primary school. Since then I have watched this, now young man, struggle with his difficulty on a daily basis as he tries to do tasks that any person without his disability would find a doddle. I have watched as he battled with ‘stress induced’ migraines because of the effort involved for him in doing normal tasks you or I would enjoy; reading, copying down material, processing information and trying to retain it, then regurgitate it at exam time. I have watched as he walked to school with shoulders so hunched over he looked like Quasimodo. I have listened as he was praised by some teachers and berated by others for the work he did in school. I have done all this, with only one goal in mind; to get him through our education system and out the other end intact.
Along the way as a parent I have done everything in my power to help all my children. They attended the Kilcock Dyslexia Association workshops for years, they also attended a private tutor again for years and I took a sabbatical from work for five of years so that I could help them at home; be there when they got home from school to soothe their bruised confidences, help with homework and support them as much as I could. But this isn’t about me; this is about children like my sons and daughter who stumble through primary and secondary school with ever decreasing help and support because special needs assistants and remedial care is being slowly eroded. Not only that, but when our children go to sit their Junior and Leaving Certificate examinations, reasonable accommodations for those in need are being denied. For the 2012 leaving certificate examinations, a total of 3,940 candidates applied for a waiver from the spelling and grammar element of language subjects. Of these, 2,587 or 66% were granted and 1,353 or 34% were refused. That’s only for the spelling and grammar waiver. (This is the part that costs no money to grant!!) Of the unsuccessful applicants for reasonable accommodations in 2012, 513 made an appeal to the independent appeals committee. Of these appeals, 32 were successful while the original decision made by the commission was upheld in the remaining cases. Statistically speaking, just over 5% of candidates who appealed were successful.
The hushed explanations from various different professionals within the field is that these services are being cut and reasonable accommodations are being denied because of what appears to be ‘budgetary constraints’. So if you believe these ‘hushed’ explanations our children’s futures are being given a monetary value by bean counters. I used to think the system was relatively fair and that if your child’s need was great, it would be met. I used to think that if a registered professional vehemently argued for reasonable accommodations on the basis of a severe need, it would be listened to and given the weight it deserved. This year my son was denied reasonable accommodations for his leaving certificate along with lots of other young men and women. We appealed the decision because an up to date psychological report suggested his dyslexia was much worse than the schools in-house standardised tests had suggested. The denial was upheld, despite the professional educational psychologist who tested him, strongly recommending this decision was reversed as a matter of urgency. Her report was not given the weight I assumed it would carry, her report, to her absolute incredulity never mind ours, appeared to have been ignored. The Minister for Education Mr Ruairi Quin is said to be satisfied that the scheme’s application and appeal processes operate in an open and transparent manner. Yet when the school received notification our appeal had been denied, the letter gave no meaningful information as to WHY our appeal had been denied; it stated simply that it had been denied. This is not transparent or open? By denying us the relevant details, we were in effect being dissuaded from appealing that appeal decision on the proper basis. The system in operation by the SEC, the Reasonable Accommodations in Certificate Examinations (RACE) is as follows: an initial request for accommodations are sent in by the school normally at the end of 5th year. By December of the exam year, the school is informed whether the student has been approved for or denied reasonable accommodations. If you are not happy with the result there is an appeals process and you are given the right of appeal. This appeal is then reviewed by an independent panel of NEPs psychologists and either overturned or upheld. Our appeal was upheld, which meant my son was being denied his reader and spelling and grammar waiver.
Despite being told by staff at the reasonable accommodations division there was no right of appeal against a rejection of an appeal, I could not let that decision stand. My son has a reading age of 10.4 years, he has just turned 19. His reading fluency is at the 4nd percentile. His writing fluency is at the 2nd percentile, his spelling is at the 2nd percentile and his maths fluency is down at the 1st percentile. There is no doubt that he is the epitome of what these reasonable accommodations were designed for; to give my child a fighting chance in state examinations by levelling the playing field for those struggling with such crippling difficulties. It was profoundly incomprehensible to me as to why his appeal was denied. The only recourse was to go down the route of a Judical Appeal. In effect this means getting your childs case before the High Court and as those two words suggest, this is a very costly exercise. As parents, we decided on this course of action; it wasn’t really a choice for us, it was a necessity for our son’s sake; but alongside that, I emailed every contact I had, every TD in my area and indeed outside of my area, every TD who had ever uttered a word about education and also directed an email to Minister Quin himself. I sent a copy of Gary’s educational psychological report to every TD and synopsised the report for them in layman’s terms. In effect, I also put a human face on that rejection: I put my sons face on that rejection. I emailed the RACE committee, the SEC, the head of the SEC and spoke to various contacts I have made through my connection with the DAI over the years. I bombarded them with phone calls and followed up my emails with personal pleas to all those TD’s. Ms Patricia Timoney, the psychologist who had reviewed Gary was speechless that our appeal had been denied and she arranged for Gary to come back to her and sit a time/error trial. Despite being told not to appeal again, I did. I sent letters with the time trial attached which showed my son had a spelling/grammar error rate of 16.8%. (RACE guidelines suggest an error rate of 8% is sufficient for the granting of the waiver.) I firmly believe, in the end, it was the political pressure that had been brought to bear which allowed the SEC to take one further look at my sons appeal. The time/error trial was the evidence needed to overturn his appeal denial and he was granted his reasonable accommodations.
As a parent of a child with significant learning difficulties I am furious that we had to go through all this to get him what he should be entitled to as a matter of course. The stress was exhausting, but the pressure we brought to bear has had the ultimate achievement of getting him what he needs. I would do it all again tomorrow. My advice to any other parent/guardian facing the same situation out there is this: don’t give up, don’t give in and continue to fight till there really is no hope left; that is the day your child starts his first exam.