Autism Spectrum Disorder Diagnosis and Obtaining State Benefits: What you need to know.
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Mary Kelly Godley Facebook
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Autism and State Assistance
This topic could take a while. As any parent who has embarked on this momentous task will tell you trying to secure financial aid from the state to help your Autistic or Special Needs child is never an easy task.
Here in Ireland though it is often akin to becoming Indiana Jones on his quest for the Holy Grail. Followed by regular stints running barefoot over 2km’s of searing hot coal, backwards, with your eyes closed and blocks dangling from your feet. Filling out the forms for State Assistance such as the Carers Allowance or the Domiciliary Care Allowance here in Ireland and sending off your child’s paperwork doesn’t even scratch the surface of what is required. After that, to even get to the stage of being refused this assistance (most people will tell you getting refused once is just a given, it’s just to be expected almost just like a ritualistic rite of passage) i.e. nobody gets it the first time.
Applying for Autism State Assistance:
Now take Domiciliary Care Allowance this is allegedly a payment made directly to a Special Needs child to help parents shoulder the additional expense involved in raising a child with Special Needs in comparison to another child of the same age who don’t have a disability. Such expenses usually include private therapies to subsidize the ones provided by the state (I know in many cases the state provision could possibly be very little or nearer to nothing). Also if your child needs to attend a special class or school then this is usually not on your doorstep and requires a lot of extra travelling. My son's school is 25Km away from me and the only Autism Early Intervention class in the county of Kerry at present.
Now when you have just received an Autism Diagnosis for your child most parents are innocent and may automatically assume that all you have to do is apply for State Aid and it will be your child’s. Those more hardened Special Needs parents among us (like me for instance) get to know in time that this is about as likely as the Bank coming to tell you that you have it hard enough already so they have decided to write off the rest of your mortgage to help you out a bit i.e. not very likely at all.
I mean when you receive that momentous news that your child has an Autism Spectrum Disorder and also that this is a lifelong disability that will require many, many therapies and support. The last thing you need to be asked when you are still raw from the shock is to have someone in a Government Department look at you pointedly and ask….,’but can you really prove your child has a Disability?’
Questions you may be asked when seeking State Aid for your Special Needs child:
The naïve may then reply ‘..Am well yes, here is my child’s diagnosis report, it says my child has a whole myriad of different needs and problems ...’
‘Well you have to realize now Mrs Godley that this isn’t America or Australia you are in, this is Ireland and the rules are a bit different here. We don’t consider children with Autism Spectrum Disorders as being particularly deserving of State Supports
‘Ah no, your child is fine, doesn’t need any help at all really. No go away Mrs Godley and come back in 15 to 20 years when your grown up child is beyond helping and then we’ll have to pick up the pieces for the rest of their life.’
‘Isn’t that a bit stupid?’ You may ask, ‘wouldn’t it be a lot more practical to just help my child now?’
‘Of course not Mrs Godley I mean do you realize how much money is needed to pay our Politicians totally above the norm? Then aren’t we all going to be paying for the Property Developers’ mega party for many more decades? Not to mention how much our Minister for Health needs to pay his Advisors to write Reports telling him how he can get out of paying people like you. Our dear Minister likes to collect good expensive reports and he’d much rather spend his budget on these Advisor Reports rather than Special Needs Children who’d be grand really if you just ignored them and forget all these fanciful notions about them needing therapy and all this extra help .’
But you may plead one last time, ‘Isn’t it just going to actually cost you away more in the long term when my child has become a psychologically damaged adult? Wouldn’t it really be a lot more cost effective to just to give my child the few quid now?”
‘Well yes you may have a point there alright Mrs Godley but by then we won’t be in government anymore and it’ll be someone else’s problem. I’ll be well retired by then anyway before any of your children grow up to be troubled adults because we wouldn’t give you any money for help when it could have been the most effective .’
Is Autism not considered to be a ‘Real Disability in Ireland?’
You see folk’s the sad truth of the matter is here in Ireland Autism actually isn’t recognized as being a ‘real,’ disability. They think a lot of us are grand really we just need to pull ourselves together and cop on.
‘But it is a real disability,’ you may plead.
‘Hmmmm,' State employee will purse their lips and look at you rather dubiously, 'well our Medical Experts, who after all know best say your child is grand.’
‘But these experts have never even met my child?’ You will protest.
‘Ah well now Mrs Godley don’t be getting ahead of yourself, these are psychic medical experts who have the capacity to see your child in their heads without ever meeting them!’
…and on it goes the old politics behind autism in Ireland…next the paperwork…
In recent years there has been a severe clampdown on awarding payments to children with Autistic Spectrum Disorders in Ireland. The usual line being spun is that children who do not have an obvious physical disability might not actually need anymore care or attention than any other child of their age?
Yes I know this begs asking the question, ‘how in Gods name can a child who has been diagnosed as having a disability such as an Autism Spectrum Disorder not require more time and energy than a typical child who can be expected to talk on time, walk on time, feed him or herself on time, is toilet trained on time, is not psychologically sensitive, can cope with socialization can make friends instinctively and doesn’t have to cope with sensory issues, motor skill issues or a so many other issues that I just can’t think of them all now. Well to date nobody has been able to explain this to me and if they can I will gladly stand corrected!
Well you see in Ireland you have 'to prove,' in blood that your child has a Disability:
In Ireland you must prove ‘beyond a reasonable doubt,’ your child needs help:
Like everything else in our magnificent country you must ‘prove,’ that a child with an Autism Spectrum Disorder has more needs than any other child. It’s no good saying, ‘for the love of God will you just look at my child’s diagnosis report. Can you just not read?’
The paperwork is just not enough and you have to be prepared to sweat much more than this.
Now every refusal letter for Domiciliary Care Allowance or Carers Allowance usually contains some version of the usual waffle about autistic children not needing ‘anymore care and attention than any other child of the same age.’
Yes you may wonder how that can possibly be when your child has just been diagnosed with an Autism Spectrum Disorder? Did the Psychologist just make it all up as she went along? Was she just making up all these communication, social, sensory and self-care issues to fill up the report as she went along?
I mean hello on the one hand you are being told ASD is a very serious, hard diagnosis to come to terms with but then on the other hand the State’s ‘Medical Experts,’ are then telling you, ‘no, no we are reading totally different info about autism that we are hiding from the rest of the world i.e. a child with autism is just grand, talks away fine on time, plays catch and ring a ring a rosie every day, skips off to the toilet themselves, feeds themselves, doesn’t wander off or need constant supervision.’
Government Waffle at its best?
Personally I would love to meet some of these Medical Experts (you are not allowed to know their names or meet them of course, they are far too precious for that), and the supposed reports that they refer to? Maybe it is possible that they do have some ground breaking new research about ASD that they are keeping from the rest of us?
Please do tell…
e.g. “It is clear from your application that your child requires additional support. However, while the diagnosis of your child’s disability is not in question, the medical evidence provided does not indicate that the extra care and attention required is substantially in excess of that required for a child of the same age.”
This folks is my loveliest example of government total waffle at its best i.e. Your child requires additional support and okay does have autism which of course in itself means your child has additional needs which the last time I checked means looking after them is going to require a lot more time and effort but somehow this doesn’t mean they have any additional care needs?
Is it the Bill Clinton Dilemma all over again?
Sorry folks it just reminds me of Bill Clinton saying he didn’t actually have any sexual relations with Monica Lewenski and then saying well maybe I did get caught with my trousers down but we weren’t doing anything, honestly, we were just …?
It is very important though folks to remember that when you are dealing with government departments you must first read the application form very, very, carefully. Believe me it is steeped in clauses, hidden agenda’s and innocent looking questions that are really very strategically placed time bombs that are very specifically meant to catch you out in a variety of cunning ways.
Now before you even attempt the form for the love of God do not be misguided enough to think that your child will get State Assistance just simply because they are obviously entitled to it. This is a mistake of mammoth proportions. Remember this is Ireland, the land of Bertie’s Galway tent. Of Charlie’s designer shirts and extravagant purchases while our poor mothers hadn’t a bob and had to make do with the latest season of Dallas while doing their home perms and eating a bag of chips.
Instead you have to approach the situation assuming that the person you are dealing with feels that the money to meet your child’s special needs is in fact coming out of their own pocket. Now please try not to feel any personal aggression towards the person on the other end of the phone (can be very, very difficult not to do I know) just try and take a deep breath, compose yourself and remember that there is also a lot of pressure being put on this civil servant, (i.e. back to that old chestnut again – ‘the politics behind autism in Ireland,’) to simply not give this benefit out to any child who has an Autism Spectrum Disorder so it is not your child specifically their contract of employment states they must deprive of Benefits but just every child with an ASD in the whole country.
Obstacles to filling out forms for Autism Spectrum Disorder:
The first real obstacle I came up against when filling out the form for DCA was when I approached my former doctor and asked him to fill out the Medical Report form. Now there is a lot more to that particular story too than I have the time to go into now but I do give a detailed description of this drama in my fictional account of the whole saga i.e. ‘Raindrop Window,’ which is currently a work in progress and I may post a few excerpts from this memoir up on my blog too when I get a chance.
So as I just said the first real obstacle many will come up against is being made to feel like a bad parent by their doctor for even having the gumption to come in and ask them to fill out the form in the first place.
‘What?” Your doctor may ask.
‘You want me to fill out a form for what?’ While he/she looks at you in bewilderment as if you were possibly the only person ever to have made such a ludicrous suggestion?
‘I want some help to pay for therapy for my child,’ you might initially timidly reply shaken by this reaction.
‘What does your child need that for?” Or worse again you might actually be told, ‘you don’t understand the politics behind autism in Ireland and there are now just away too many parents out there who are just labelling their children to claim state benefits and get extra help in school!’
Shocking as this statement may seem it was my first real eye opener into what really lay ahead. There is no sympathy in this country for the parents of children with an Autism Spectrum Disorder instead you get cold indifference, not believed, trodden on and then when you are already at your lowest ebb you will then be further taken advantage of when all you really are hoping for is a shoulder to cry on and a bit of support. Sorry to break it in my bluntly autistic way but not in this country folks. Still though the only up side is ‘that which doth not kill us will make us stronger,’ and now I have to admit I am often as tough as old boots.
Persevere with the forms, if you are lucky you might be able to change your doctor if you get no joy there (as this too can be very difficult to do), then just stand your ground and if necessary pull out your child’s psychological assessment and argue your child’s case or if you have been to a psychologist for a private assessment then ask them to write to your doctor once again stating the facts and the issues. Believe me by the time your child receives DCA you will be reciting your child’s sensory issues, self care issues etc., communications problems etc., in your sleep.
Some won’t be unlucky with their doctor at all but unfortunately many will. This of course is another element of the, ‘you know what by now i.e. P behind A (Politics Behind Autism)’ It is of course being purposefully done because doctors are actually very well aware that Autism is costing the Irish State a lot of money and at the end of the day that means a smaller slice of the cake for them. So the first battle is to get the Medical Report filled out at all. If you do think this is going to be a problem then be very sure to go in knowing your stuff very well.
Please do also make out a very detailed list of all of your, child’s physical, social, communication, emotional and self care issues. Study it carefully before seeing your GP and bring the notes you have written about the stuff you need to do for your child everyday that is not typical of another child of that age with you to the surgery.
As a very good friend of mine once said, ‘Mary the only way to get services for your autistic child in this country is by causing a right stir, name them and shame them and you will get services. Now it is has only been a mildly successful strategy so far but this ranting is great crack and inspiring me no end…so I will rant on regardless.
Now the official pamphlets (if you can actually get your hands on one from the bottom of a drawer somewhere) usually just regurgitate what is already available on the website link and will probably lead you to believe that it’s as simple as filling out the form and then Ha! Ha! Ha!they’ll just give it to you.
No Medical Expert in the world can get your child Autism Assistance without a lot of pain in Ireland:
Folks please note that not even if you got Temple Grandin to fill out the application form for you and you then hired a twenty six seater coach , and even if you could then get Tony Attwood to write about your child’s difficulties until the coach is full to the top with expert reports and then you reversed the coach up to the window of the Domiciliary Care Allowance office and said, ‘here you go,’
I am pretty sure the initial reaction would first be, ‘Mrs Godley our Medical Experts do not have the time or resources to be reading all that, no, no, no, just take this coach home and then just send in the standard application form.
You might argue, ‘but won’t my child just get refused then?”
‘Of course Mrs Godley but don’t worry, our Medical Experts will eventually have to give it to you but first we need blood, sweat, tears and hardship, its just the way it is in Ireland, there are certain rules to be adhered to. Don’t you know anything yet about the Politics behind Autism in Ireland?”
Aspergers Mom filling out a form:
Now getting back to my own initial application for Domiciliary Care Allowance for my son, as I have previously mentioned I am a woman with Aspergers Syndrome i.e. an Aspie.
As anyone who is an Aspie will know (or anyone close to one will also know), we are just not capable of half doing a task. If I write a letter then they are normally of novel length (and I have written many and I know they just love to see my letters coming and I also think at this stage that their Legal Advisors also have a particular fondness for me and are so excited when they see another letter coming from the ranting Aspie mom from the bog, so a big hi to you all, thanks for all your nice advice!)
An Aspie’s attention to the miniscule details means when I am presented with a form I take it very seriously and until it is completed it becomes an instant area of special interest and every part of it is inspected and reflected upon before I write any reply. This is just how the Aspie is I can’t help it my brain is wired this way (or to the moon as many have often said!)
So when I sent in my original application for DCA it was quite a spectacular collection of intricately detailed facts, photocopies of my sons every move and a 15 page description of why my child does in fact require a lot more care and attention than any other typical child of his age.
Then though many, many weeks later my application form, along with all the paperwork came back with a standard letter of refusal that had no relevance whatsoever to the information I had sent them. I couldn’t believe that after such a long wait and many heated phone call conversations to them that they could send me this crap.
Instantly I went into what I now know was ‘meltdown mode,’ (I didn’t know that then because I still didn’t have any official diagnosis of Aspergers Syndrome yet, getting that diagnosis is also another v. interesting story).
Straight away I knew I wasn’t waiting for any appeals process that would take many more months while Adam still got feck all in the way of services, this crap had to be nipped in the bud now.
So I grabbed my mobile phone and dialed the DCA Lo-Call no. and said.
‘I want to talk to one of your ‘Expert Medical Advisors.’
Obviously the poor girl at the other end of the phone heard the steeliness in my voice and paused for a moment.
‘Am, sorry who am I speaking to?’
Doing my best to remain calm I gave her my details and then she suggested I talk to her Manager.
So then I asked this Manager, ‘who exactly are ye’re ‘Expert Medical Advisors,’ and what special expertise do they have with autistic children exactly?’
‘Am, well, they are all very highly distinguished experts in their fields.’
‘Are they?’ I ask rather caustically. ‘Can I have a meeting with them?’
‘Well, Mrs Godley they don’t really meet with the public usually.’
‘My child has autism, and I sent you 15 pages explaining what his special needs are and I get this stupid generic letter that to me just proves nobody actually read my application so then how can you possibly turn down my application?’
‘I don’t know, am, perhaps you just need to send in a bit more information?’
So then I lost it completely…..
Aspergers Mom in Meltdown Mode:
‘I just told you I sent the application in with a 15 page letter explaining in great detail what all of Adam’s needs are. As well as the recommended daily breakdown of what additional tasks I have to do for him every day. Things like him not feeding himself yet, or he not being toilet trained yet, he can’t speak, he’s totally hyperactive and often keeps me up half the night, I have to watch him every minute of the day and keep all the windows and doors in the house locked because he will wander off.’
‘Yes, am, well, you can of course appeal this decision.’
‘And how long more is that going to take? Adam needs this money now, his early intervention class is 25Km away from me and is the only one in the county. There is so much more in the way of early intervention that he should be getting but isn’t because of this lack of available resources line. The HSE Early Intervention services are giving him nothing and won’t now because they say he needs, a more comprehensive assessment from the Autism Services and of course now they are saying now this will take months again so now while he stays on their waiting list this he will once again get nothing at all.’
‘I understand Mrs Godley but that’s not our fault.’
‘Look why can’t you understand how frustrated I am? Everyday I am reading how important early intervention is but by the time it’s decided oh yes your child does in fact need early intervention, he’ll more than likely be too old for it. I thought Domiciliary Care Allowance was supposed to help to pay for therapy that my child needs when the state isn’t providing any and now ye won’t provide it either.’ My heart is pounding rapidly now and I know my cheeks are bright red and I couldn’t stop now even if I wanted to. The pent-up frustration is just all gushing out now.
‘So do you know what I am going to do now? I am coming up there and I am not going home until I get a meeting with these expert medical advisors. I want them to explain how in Gods name anyone with any knowledge of autism can say that an autistic child doesn’t require anymore care and attention than another child? Do these expert medical advisors actually live on this planet or do they really exist at all?’
‘Mrs Godley I can assure you they absolutely do exist and they do study every file very carefully and didn’t come to their decision lightly.’
‘Give me the contact details for them then.’
‘We are not allowed to give out that information.’
The lady pauses momentarily, ‘am, well it’s not the proper procedure.’
‘I have a child with autism and treating him like this certainly isn’t proper procedure. He is a vulnerable, special needs child whose basic human rights are being trod upon in this country. What’s your name?’
‘Marion Haughey,’ she says with a sharp intake of breath.
‘Your office is treating my child like this because he has autism, aren’t you it’s because he has a psychological disability because if he had disability that was medically obvious you wouldn’t be having this conversation with me, would you?’
‘Mrs Godley every application is treated in the same manner our expert medical advisors, just go on the details presented in each individual case.’
‘Well then tell them that I want a meeting with them because now because I am dying to read their new research about autism. I mean they must be using research material that I have never even seen because apparently in their world autism is no problem at all. Or they must have some kind of evidence that an autistic child is actually grand until they get to six? Before then autism should just be ignored and it might just go away. Jesus I am sick of this country! I am getting off this phone and I am going to a solicitor and then I am lodging an appeal with the Ombudsman for Children Rights and the European Court of Human Rights. Surely people can’t just be allowed to treat vulnerable children like this? Then when I have all that done I am going to ring every radio station in the country, all the TV stations and then I am writing to every newspaper that I can find and I am telling them all about the way ye are treating autistic children in this country. Then I am getting into my car and I am coming up there and I am going to sit in ye’re office until I get to see all of ye’re expert medical advisors and their reports about my son…..’
Then Marion Haughey intervened in my rant .
‘Mrs Godley would you like to speak with our Senior Manager?’
I half sigh and half grunt, ‘only if it’s going to make some bit of difference.’
‘Am he is off today but he will be back in the morning. Can I take your number and he will ring you?’
‘No,’ I reply, ‘give me his details and I will ring him, nobody ever calls me back.’
‘Certainly but I can assure you he will ring back.’
An Aspergers Mom’s meltdown is what it takes:
Did the Senior Manager ring back the next day? Well you will never believe it but in fact he actually did. After a very brief conversation he asked me to send in another report from the HSE Early Intervention team that I had just received. Then he assured me that that report and a note would be all that would be required.
So there you go folks’ what is needed to get State Benefits is a good autistic meltdown followed by a momentous rant and a threat of naming and shaming them. It is tough that this is the kind of country we live in and that that this regime is allowed to continue but unfortunately for our autistic children, it does.
So a couple of days later I got my letter saying that the DCA office had received my additional information that I had sent to them and Adam was being awarded DCA. Just like that and he would receive back pay from the date I had applied. The back pay took a while and another rant but it was received in a reasonable amount of time.
Then all of a sudden no appeal was needed, no more consultations with expert medical advisors took place and there was no need after all to hire my brother in laws Adrian’s coach to transport the bus loads of paperwork to the DCA office because now all of a sudden they miraculously had more than enough additional information.
So you see folks a ranting Aspie mom from the bogs of Ireland in the midst of her meltdown got DCA in a matter of minutes..
Stranger than fiction but quite true….
This is an excerpt taken from my Fiction Novel, ‘Raindrop Window.’