Fighting for Domiciliary Care Allowance for my son with Asperger's

I got this in the post today:

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 who does not suffer from your child's condition.  As a result your child is not considered eligible for Domiciliary Care Allowance.

I suggest that my blog proves otherwise!  But then the Department of Social Protection has probably not found it yet.  And it's not just me.  Apparently many children with Autism, Asperger's and similar diagnoses are routinely refused DCA at the first application, which is then followed by a round of appeals and reviews, presumably designed to sap the will of parents already struggling with the difficulties of rearing a child with asd.

Facebook friends have advised me to keep a daily diary of everything I have to do for aspie boy.  As I need to start the appeals process tomorrow, I started writing the diary today.   And here it is:

A Day in the Life of a 10 year old aspie....with no meltdowns
 (probably very boring to read unless you have a similar child)

At 6.15 am he calls me, so I go down to him, give him a vest and pyjama bottoms and wait while he puts them on.  Then we go downstairs and I make him a hot chocolate.  He goes into his den and plays.  At 7.30 am I go into him and remind him to get dressed by 8.  I give further reminds at 7.45 and 7.55.  At 8, I remind him to come in for his breakfast.  And again at 10 past 8.  I make drinks for breakfast and lunch.   Once he comes into the kitchen for breakfast I have to keep reminding him to get his bowl and cornflakes as he keeps running up and down the room. 
After breakfast I remind and supervise him in putting on his coat and shoes, and cleaning his teeth.  When the school bus arrives at about 8.30 am I need to see him across the road because he just 'forgets' to look out for cars unless reminded.
He comes in from school at 2.40 pm looking glum after a run in with another boy who has apparently threatened to hurt him.  I remind him that he needs to talk to his teacher.  He also has a mark on his hand and a pain in his wrist, which needs lots of plaster tape and Nurofen before he will use it.   It seems he refused to do school work on the strength of his 'sore' wrist and was given extra homework as a result. 
The school provides lunch to stop the boys eating rubbish, but my boy won't eat it, and while I put a drink in his bag, he often forgets that too.  So he is hungry and thirsty when he comes in.  But I still have to tell him to finish the drink in his bag and make him lunch, followed by 20 minutes in his den to calm down.  Then he comes into the kitchen and it takes another 55 minutes before I can get him to start the homework, and 45 minutes to complete it.  I have to supervise it all, to keep him on task, and then check it.  
Three dinners need to be made: Smiley only eats mashed potato, but he won't touch that, so I also make lasagne and peas for me and Angel, and spaghetti bolognese for aspie boy.  About 8pm I go in with medicine, a drink and a piece of dark chocolate.  He gets a 5 minute warning before his shower, which turns into 10 minutes as he asks for another hot chocolate.  Then I have to wait while he checks something on his laptop.  Into the bathroom, where my role as usual is to remind him of what he should be doing.  After the shower it's up to his bedroom.  I read him a story but he keeps forgetting to listen and tries to engage me in conversation.  Then I say good night, but because of his fears I have to sit on the end of the bed and wait for him to go to sleep. This can take from 10 minutes to one and a half hours. Tonight I was back downstairs by 9.45 pm.  Finally I got time to complete a long-term illness application for him and to complete this diary...


  1. If you finally lost it and decided you could no longer cope, they'd soon find the £100,000 + needed for 52 week residential care. I've seen this happen 5 times in my 8 years working with ASD sufferers.
    It disgusts me. Keep fighting.

  2. God it's so hard dealing with the face less bureaucrats isn't it? I think if you could get one to come out and see you and your son you would get the money xxx

  3. Why is it the people that deserve the help the most always have to fight the hardest for it.....

    I just don't get it. How can they say that aspie boy doesn't need any more supervision than a child his age without asp. Do they not understand what asp. is?????

    Mind boggling.....I know you don't need another battle but don't give up you need this help for sure.

    Fingers crossed.xxxx

  4. And actually that letter makes no sense, yes he needs additional support but no it is no more than that for a child without his conditional. So what every child needs additional support then??

  5. Keep fighting Blue Sky. I had to write reems of additional pages of notes for our DLA (disability living allowance) application. Then they took months to think about it before they agreed to it. I doubt I would have got it if I hadn't written additional notes.

  6. That is unbelievable....keep up the fight though. What do they say, Rome wasn't built in a day? Still doesn't make it any less frustrating though. Hang in there.

  7. Had the same info sent out from the faceless DCA section last year. In the end we were referred to to the Social Welfare Appeals Office (SWAO), yet another bottomless pit. Either way after hitting up every political party which was a waste of time I went on the offensive; must be the soldier in me. I made it my business to read all ofthe appropriate sections of the Social Welfare Acts (amended 2010) related to DCA etc. Having analysed all of the info from the current and past acts I came to a simple conclusion. There is one government dept who takes money (Revenue) who operate very efficiently, and there are the others who do their best to withhold benefits as if it was coming out of their own pocket. So, what did I learn, well the DCA section will refuse you if your kids/relevant persons case is not stated the way they want to read it. Saying that you are 'sick' when the act says you must be 'very sick' is what is adding to the ridiculous situation. Therefore my reccomendation is that you get the person who does the diagnosis to use the 'exact' language used in the Act and present it as new evidence. What have you got to lose? Since Social Welfare took 800+ cases were presented; at the time we were fighting, and it was fighting, for DCA they had handled approx 16. To finish; do not give in, fight until your are weak and then suck it up and fight again. It will pay off. By the way; you can apply for Carers at the same time despite what DCA say. We did and we got back payment.

  8. And yet another one pushed down this route. Exhausting and another job you really don't need...but stick with it. You go show them the effects of this 'invisible disability'. You go make them take that refusal right back....and give you a nice back-dated amount.

    Good luck.

    xx Jazzy

  9. Sickening. But I like Will's suggestion - seems plausible in a stupid Irish govt. way.

  10. Kate, it's banana republic at it's finest but to be very honest we did a hell of a lot of research and wrote in depth about every hole we found in their case for refusal. DCA section were quick to handle our case once the HSE Doctors wrote so exactly. Now while they, the Dept of Social and Family affairs handle the claims they still have seccunded HSE staff to vette the applications. Get the exact language in your claim, that's my advice.

  11. @LUCEWOMAN - and remember in my case it would be €200,000 plus as I've two with special needs. It's mad!

    @auntiegwen - so true :) Up till our trip to A&E I don't think anyone believed me xxx

    @Helen - I agree, the letter and their whole approach doesn't make sense - all these appeals cost MONEY that could be much better spent xxxx

    @Deb - I mostly type everything now - especially as my handwriting is almost unreadable lol - soI'm going to print it all off, including some edited blog posts and copy all relevant Government Ministers as well.

    @Lizbeth - I'm ready for the fight :)

    @Will - thank you for the really great advice, I hope it will help lots of other people and I will certainly be using it. BTW I had no problem at all getting DCA for my daughter with cerebral palsy, which was great, but it is so wrong that children with asd are not treated the same way.

    @Jazzygal - thanks so much for your support xx

    @Kate - thanks and I agree.

    @Will - thanks again.

  12. Hi, I know this was posted a while ago, but I have to comment. I am a fifteen year old Asperger girl, a freshmen in highschool. High school is a crazy, challenging place for a kid with autism. It's when you long to fit in, but you never can, and even with ten thousand friends, you're still alone. The homework is hard to keep track of , and impossible to stay on top of. The hallways are chotic, crazy torture. Gym class is the worst. Sensory filled and crazy, I am uncoordinated, and laughed at. I go home every night and cry. Yet, why don't the administrators see this? Why won't they let me out of gym class so I can have a study hall? I don't want to be laughed at in gym. I want to keep up with my homework. They want me to drop my child development class instead. I won't. I need that class. I am now begining to come to terms with what it really means to be autistic. I am old enough to understand it all. And I know that when I grow up, I am going to help kids like me. I am going to work in the special educaion department, and I am going to give kids like me the treatment that they rightly deserve. I am reaserching autism spectrum disorder, for my English Project, in an attemt to teach my classmates what it is like, and I stumbled upon this site.

    It's awful how administrators treat us Aspies. They think they can shove us aside, forget about it. The problem is that there are so many of us, that the schools can't take care of us all. Well, Albert Einstien was probably autistic. So was Abraham Lincoln, Thomas Jefferson, Mozart, Behtoven, Marie Curie, Mark Twain, Bill Gates, and almost every historical figure that has majorly impacted this world. We are the future, and they are forcing us to deal with these problems on our own. Someday in the near future, there will be a revolution; parents, Aspies, and autistics, we won't stand for it anymore!

    There will always be someone telling you that your son is just fine. That he dosn't need extra help. There will be teachers and principals who don't help your child. You need to fight back. Don't let them tell you that, and put your foot down. That's what my mom dose for me. She gets a lawyer, and hits the school with all she's got. It's sad that sometimes it has to come to that, but it dose. There are certain special education laws that your child is entitled to. Make sure you know them, and point it out when the school is violating them. And tell him it gets better. Because even in the darkest spots, there is always a few angels who will help you. Always.

  13. @anonymous - a million apologies for not noticing your comment before. Normally anon comments are spam, so I am sorry I didn't read this. I am currently trying to choose a secondary school (high school) for my son, and I can't find one that is exactly what I am looking for. I really hope that you do work in special education and help children with autism and aspergers, that would be a really worthwhile things to do xx