Autism letter to Minister for Education
Minister for Education and Skills - Ruairi Quinn
Letter emailed to Ruairi Quinn, Minister for Education and Skills in Ireland.
'A child not read to when going to bed at night is an abused child.'
Written on 28/03/2011
Firstly I would like to congratulate you on your new position as the Minister for Education and Skills, I wish you well in your new job and I do hope that you can ensure that what I and my son are now experiencing in terms of accessing and maintaining an appropriate education for my child will never have to happen to another family.
'A child not read to when going to bed at night was an abused child,' Minister for Education Ruairí Quinn told the Dáil.
That quotation above which I believe you said gave me hope that you may be the person that can help me out of my current dilemma. My son Adam is three and a half and I do read to him every night and I have done since before he was a year old but unfortunately Adam still can't talk about his stories or say anymore than a few repetitive words, he doesn't point at any of the characters in the book and I now know that this is because my handsome son has autism.
As I am sure you are particularly aware a diagnosis of autism is difficult on the whole family and dealing with this in itself is a very stressful and time consuming event for any family to have to deal with but unfortunately in this country at the moment that is only a small fraction of the actual stress and trauma that parents of autistic children have to contend with every day of their lives.
When I first visited my doctor and expressed my concerns about my sons speech delay, lack of attention and immersion in his own world etc., I was told that I didn’t understand the politics behind autism in this country and I have to say that I now clearly understand exactly what he meant by that statement.
At the moment my son is still on the waiting list for a HSE (Irish Health Service Executive) multidisciplinary assessment for autism even though I applied for this assessment on the 18/08/2010 (I have many reports now from many people including a private psychologist, a private paediatrician from London, two Speech Therapists, the Early Intervention Services team etc., that my son is in fact autistic) and the law in relation to the Disability Act 2005 clearly states that my son is entitled to an assessment, a diagnosis and a referral for appropriate educational services within six months.
I recently spoke to the chairperson of a local Autism group here in Kerry and I said to him isn’t this against the law? He agreed with me that it most certainly is. The Health Service told me that an extension was required to the six month period because my son had to be re-referred from the Early Intervention Services to the Autism clinic but I have spoken to many other parents who have also been told the period has to be extended for many other reasons also.
When I brought this to the attention of the Irish Early Intervention Services that any extension is only supposed to be sought or warranted in 'very exceptional circumstances ,' I did not get any proper explanation as to what this is defined as being? So I also brought this to the attention of senior officials in the Health Service and they have blamed a lack of available resources for this delay and told me that they currently have over 300 children between the ages of 3 and 18 on their waiting list for autism assessments and at present they can only diagnose six per month.
The more I delve into the autism world here in Ireland the more I realize that there are shocking practices taking place every day that are clearly not best practice and absolutely against the law in relation to the Disability Act 2005. I have also read various reports laying out the rules of best practice being cited by the Irish Autism Services which I now know are not worth the paper they are written on because they are violating every single one of these rules themselves and are fully aware that they are doing this.
It sickens me that my three year old son appears to be a pawn in the whole power struggle that is currently going on between the various groups who obviously want to cash in on the prevalence of autism in Ireland at the moment. I am writing to you as a man with integrity to please do something to redress the scandal that is currently being cited as acceptable practice in relation to the Early Intervention services in Kerry at the moment.
Only last week I spoke to another distraught mother whose son also has autism and she said she did not get her Assessment of Need Report within six months either and it was a long and arduous process to get it at all and then when she finally did get a referral to the Health Services Early Intervention Autism pre-school for intensive early intervention services it consisted of one to one with a teacher for 1 and a half hours, twice a week? I could not believe that this is now considered to be ‘intensive early intervention with a multidisciplinary team,’ outside of these three hours this mother was also advised to send her son to the local pre-school for ‘social integration,’ (without first equipping him with any of the skills he needs to cope in this environment) this is so wrong and six months later this mother said she could see no improvement whatsoever in her son.
All the research and codes of best practice I have read clearly states that a child with autism needs to be given intensive early intervention in an educational setting designed for the purpose of equipping a child with the necessary communication, behavioural and social skills that this child doesn't inherently possess and this can only be done in an early intervention class with other children who are at the same level and by not doing this in my view this state is actually advocating child abuse at a much worse level than by not reading to your child at night. These children who are being deprived an appropriate foundation to their future education will become troubled teenagers and disjointed adults who will need continuous lifelong services which could have been avoided if the had received a proper start in life through proper early intervention in my view.
Through much struggling and battling on my part I eventually paid for a private assessment for my son to get a Special Education Report for him to allow my son to be enrolled in an appropriate school. Now my son is currently attending an Early Intervention ASD Class at Killahan National School, in Abbeydorney near Tralee in Co. Kerry but this excellent facility which provides so much for autistic children in this county is now on the verge of closure because of the current cutbacks and ‘the Politics behind Autism in Ireland.’ I am sure you know what I am referring to especially as you too have an autistic child I have been told.
As a parent this all makes me so mad, so stressed and so at odds as to know what to do next. It is my innocent, vulnerable child who is suffering because of all of this. Everyday I am sickened me when I have to watch my innocent child and other Special Needs children being stuck in the middle of this quagmire that is ‘the politics behind autism,’ in this country today.
At the moment my son Adam is getting 25 hours a week of intensive early intervention with an experienced and fully qualified autism specific teacher and two highly trained and experienced Special Needs Assistants at Killahan National School Autism pre-school class and while the back up services being provided i.e. Speech Therapy and Occupational Therapy are now very sparse and well below what is recommended and are also far below what they used to provide.
It is my son’s future potential that is being lost here and he does not get a second chance to have early intervention. I am deeply sickened that nobody seems to care about his future at present and the autism services in Ireland as I see them are just all about satisfying the vested interest of the various parties who are fighting it out with each other over who gets what in relation to making a profit out of providing autism services in this country or consequently those who don’t make any profit but are supposed to be state run services can actually get away without supplying hardly any services at all.
My only remaining hope other than legal action is that maybe your new government might actually want to help autistic children to obtain proper services? I do not really want to take legal action over these matters but I am now also deeply resentful of the amount of time I am having to spend writing irate letters to people, newspapers and radio stations to try to ensure services for my son when I would much rather be spending this time actually trying to work with Adam myself. I just want my son to be able to stay in his excellent school with other autistic children until he is at the appropriate level to be able to cope with mainstream school, why is that too much to ask for at the moment? I'd be eternally grateful if someone could just explain the reason behind closing my son's school to me as it makes no sense to me whatsoever and deeply worries me.
I would also welcome the opportunity to discuss this with you in more detail as this letter is just a very brief summary of the information I have in my possession as at this stage I am weary from writing letters and very, very resentful of the time it is taking up now that I know in the ideal world I should be spending with my son to help him as much as possible.
I would also like to wish you well in your new job and I really hope the reformation of the Irish Health Service brings some positive change, especially for my son Adam,
Mary Kelly Godley
N.B. This letter was written and emailed in March 2011 and to date has never even been acknowledged by Ruairi Quinn, Minister for Health in Ireland, never mind replied to. The new Irish government that I spoke of here care just as little as the last one did about Ireland’s Autistic, Fragile X and Special Needs children.
Nobody listens no matter how loud you shout…..that’s the essence of the ‘Politics behind Autism in Ireland.’
Early Intervention in Ireland
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