My Child has autism - What am I entitled to?

I often meet mothers and fathers of newly diagnosed children with autism and once the initial shock and sometimes relief, sometimes devastation has worn off a little, most parents are asking "What do I do now?"

When a psychologist concludes that a child is on the autistic spectrum, they normally write a list of recommendations for on-going treatment and services on the child's psychology report (I would love to meet a child in Ireland who actually receives anything from the HSE even close to what is recommended but I will try not to digress into what is another sensitive topic today) but what they don't tell you (or certainly didn't tell me or the majority of parents that I meet) is what benefits or entitlements that are available for you to claim and so this blog today is to hopefully provide that information to all of the autism Mums and Dad out there in our Emerald isle. This is a long blog and so I have highlighted in red the benefits that I am talking about so that people can just skip down to the information that they want rather than reading the whole blog.

The first thing that I need to tell you is this; Please, please do not feel that if you claim benefits or entitlements for your child that you are some how 'profiting' from their disability. I know a lot of parents who feel like this and indeed I felt like this myself in the beginning of my own journey. However, you need to remind yourself that some day you will not be around to mind your child and you need to start planning for that day by helping and teaching your child to be as independent as they can possibly be and the best way to do that is by making sure that your child avails of as many services as you can possibly manage or afford such as speech therapy, occupational therapy, behaviour therapy, play therapy, physiotherapy and so on. Unfortunately the HSE is not in a position to offer the majority of our children the amount of time or services that they actually need and so most of this will need to be sourced by the parent privately which can be very expensive. This is what these entitlements are for; treatments and the hidden costs of autism such as new locks on your house for the child that wanders, a weighted blanket for the child who needs pressure or a new carpet for the child who likes the sensory feel of tearing it or even riding lessons for the child who finds after school activities with other children too hard to manage but who has a wonderful affinity with horses. There are too many costs to mention but I am sure that if you are a parent reading this then you know what I mean.

Even if your son or daughter is incredibly high functioning, they may still find it hard to gain employment if they haven't learnt a minimum amount of social skills by the time that they are an adult and will be much more of a drain on our economy by claiming the dole every week or disability rather than getting the help and services that they need now as a child.

The first benefit that you will need to claim is the Domiciliary Care allowance and this is the link to the application form and further information about this allowance http://www.welfare.ie/en/Pages/1078_Domiciliary-Care-Allowance.aspx. Alternatively you can text "FORM DCA" followed by your name and address to 51909 and the revenue will send you a form. The payment is €309.50 a month but here is the tricky part - I have met very few people who have been granted this benefit the first time that they applied. Most people are refused this payment by someone who has never actually met your son or daughter but deems "that they do not have needs that are substantially in excess of another child of the same age". I think that if this was true then your child would not have received a diagnosis of autism in the first place. However you then have to go through the whole tiresome process of appealing it which can add months and months on to your wait but hopefully if you follow these steps you will increase your chances of being approved on your first application.

Firstly- fill out the part of your form that should be filled out by your GP yourself and mark as many boxes as you justify as severe (this may be hard to do but just remember that you will get your child the help that they need now as opposed to when it is too late). Do not think of how your child is on a typical day but only apply thinking of them at their absolute worst. You will then need to explain this to your GP (such as if you mark severe for behaviour, tell your GP about the time he threw the telly out of the upstairs window or about the time you had to replace the carpets upatairs because your daughter had smeared them all with her own excrement. Even just one violent episode towards themselves or another person is enough to justify a severe tick) and then ask your GP to sign. Most GPS should agree to do this as who knows the child better than their parent? It is no harm to bring a separate blank form with you to redo if you find that your GP disagrees with you on an issue or two. If you find that your GP is not being helpful or does not understand your child then it may be worth getting a second opinion.

Next, write an accompanying letter detailing a day in the life of your child highlighting every possible difficulty that they have. Please write about the worst day that they have ever had and also outline every additional expense that you now have since your child's disability has been identified e.g. private speech therapy, replacing destroyed possessions, extra home care, special needs horse riding lessons, play therapy, a gluten free diet etc. etc. Leave nothing out.

The next thing that you are going to apply for is the incapacitated child tax credit  and you will find further information and the form for it on this page http://www.revenue.ie/en/tax/it/credits/incapacitated-child-credit.html.
Now the qualifying criteria for this tax credit is very badly worded and from my dealings with individuals in the tax office while I was trying to get this credit approved myself , I have concluded that most tax officers do not really understand the qualifying criteria for it either.

I was initially refused this credit because I was told that only children with acute autism were entitled to it and as most of us parents know, there is no such thing as acute autism. The word 'acute' suggests that the autism came upon your child suddenly and that there is hope that your child will recover. I spoke to an tax officer about this and she told me that what they actually meant was severe autism but I explained to her that autism is a spectrum. You may have severe speech and language issues but mild behavioural issues and maybe moderately low muscle tone. No child with autism can be put into a box of severe or mild as their disabilities may vary. She then said that the child must be permanently incapacitated with no hope of relief. Again I asked her to clarify. If a child takes melatonin and receives relief from their inability to sleep, is that 'too much' relief to qualify? Is not the very idea and basis for therapy for the sole purpose of providing relief to the child? And no matter how low functioning a child with autism may be, that does not mean to say that they cannot become high functioning in the future with the right support in place. Without a crystal ball, none of us can predict the future for our children. I believe that the tax officer eventually grew tired of me and so we agreed on a certain wording that the doctor was to write out and sign and then my daughter would qualify for the tax credit. This following statement was what we both agreed to; "The following child, xxxx aged 4 years and 6 months has recently received a diagnosis of autism spectrum disorder. The condition is permanent and will require specialist care for life." I hope that this wording will help achieve this benefit for most of you as well but if not, you may just need speak to someone personally, expose their lack of knowledge as I did and you may get it just so you will go away ;-).

Now if you are going to give up work to care for your child, or if you are already out of work or working less than fifteen hours a week, you can apply for Carer's allowance or Carer's Benefit and this is the page where you will find the application form and further information.
http://www.citizensinformation.ie/en/social_welfare/social_welfare_payments/carers/carers_allowance.html
Unlike the other payments this payment is means tested and if your child is under the age of sixteen then it is only available to you if you are already in receipt of the domicillary care allowance so if you do not get the Domiciliary Care allowance then you will not get the carer's allowance. I would apply for the two at the same time though as you can state on a covering letter to the carer's allowance team that you are awaiting to hear on the Domicillary care and that way your allowance will be backdated the appropriate amount of time.
You may feel that your means are not modest enough and that there is no point even applying for this payment but it is worth noting that you may still be granted it and your payment will decrease from the full sum of €204 a week to a payment more in line with your means so it is well worth your while to apply anyway.

Now you can then apply for the Household Benefits which pays for your TV licence yearly and €35 a month into either your gas bill or electric bill and €9.50 into your phone bill and this is the  page that will give you all of this information http://www.citizensinformation.ie/en/social_welfare/social_welfare_payments/extra_social_welfare_benefits/household_benefits_package.html. Please note that you will only qualify for this payment if you qualify for the carer's allowance but they should backdate it to the same date that the carer's allowance is backdated to,

The Respite Care grant of €1375 is a payment paid automatically once a year in June to those already in receipt of Domiciliary Care allowance of Carers Allowance or Carer's benefit and you do not need to apply for this yourself.

The next thing that you should apply for is a Medical Card or a GP visit card. Autism is a condition that doesn't always come alone and some children may have difficulty sleeping, bowel difficulties, they may be more accident prone due to low muscle tone or they may have limited speech leading you to have to bring them to the doctor every time they show any discomfort as your child may not be able to tell you what is wrong. A medical card and GP card is means tested but there is sometimes allowances made if a child is deemed to have what they consider to be a long term illness (I know we all hate to hear autism referred to as an illness but for the sake of getting as much information out there as possible I hope that I will be forgiven for that one).

Finally, although it is now too late for 2013, it is worth knowing that any school going child with a severe learning disability or a child who has autism is entitled to forty hours home tuition where school tuition is not available with a tutor that the department of education will pay for. This is called the July Provision and this is the link that will give you further information http://www.education.ie/en/Parents/Services/July-Provision/ . You will need to source the teacher yourself and they must have a teaching qualification and must not be currently on any leave such as a career break or maternity leave and it goes without saying that you should always get references and ensure that they are Garda approved.

Now once you have all that is place, the next thing that you need to do is work out what therapies you need to give your child. Please keep in mind that every child is different and different approaches will work for different children. The best advice that I can give you is to discuss this in depth with your child's psychologist and anyone else who has been dealing with your child such as an occupational therapist or speech therapist and ask them what they think would be the best private therapies for your child and if they can recommend someone for you also.

There are a lot of alternative therapies out there that claim to work miracles such as diet, listening therapy and biomedical treatments that you may not be advised about as they do not have the scientific backing behind them that tradition therapies have and so you will need to research these yourself but be careful! While many parents claim to see amazing progress in their child, many other parents do not and these approaches can be very expensive.

I know that when my daughter was diagnosed I tried a lot of alternative therapies while I personally was looking for what I hoped would be a 'miracle cure' but nothing achieved the results that I wanted and so I started to invest my time and money into the hard slog traditional approach of speech therapy and occupational therapy (which I got a lot more of because it was cheaper) and low and behold, Charlotte made huge leaps forward with her speech and co-ordination. Please note that I am not knocking alternative therapies at all, there are so many parents out there with more experience than me who swear by them, I just want to advise people not to neglect the traditional therapies also.

Finally, for anyone looking for any further information, there is a wonderful closed group on Facebook called the DCA warriors and they are full of information, advice and support so join the group and ask any questions that you may have and there should be a huge network of Mums and Dads to support you and point you in the right direction. I hope they don't mind me mentioning them here.

I hope that this has been useful and if anyone wants to add something that I may have forgotten, then please leave a message on my page.