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Irish Autism Advocacy. It's not leading to change.

Updated on September 29, 2012
Getting a voice for autism in Ireland is not happening
Getting a voice for autism in Ireland is not happening
Special Needs kids in Ireland are facing yet more cuts
Special Needs kids in Ireland are facing yet more cuts
Domiciliary Care Allowance under attack, payment to Irish kids already paying for the recession
Domiciliary Care Allowance under attack, payment to Irish kids already paying for the recession
We have our own brand of Autism Speaks in Ireland and it silences many
We have our own brand of Autism Speaks in Ireland and it silences many
Autistic people are not consulted in decisions that hugely affect them - a global issue
Autistic people are not consulted in decisions that hugely affect them - a global issue
Irish Minister says review of Disability grant is not to cut it but improve it???
Irish Minister says review of Disability grant is not to cut it but improve it???
Autistic adults worldwide are being silenced it seems.
Autistic adults worldwide are being silenced it seems.
There are many advertising their good work but where can we see it?
There are many advertising their good work but where can we see it?
I have no intention of cutting payments to your Special Needs kids? Heard it all before
I have no intention of cutting payments to your Special Needs kids? Heard it all before

What do some Autism Groups really spend their money on?

Running an Autism Charity can be big business!

Has the American Autism Industry conquered Ireland too?

Autism Services in your country

How long does a diagnosis take in your country

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Autism Advocacy Groups

Are you a member of an Autism Group

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Autism State Services in your country

What Services does your autistic child get from the state?

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Are Ireland's Autism Services better or worse than your country?

Are Autism services better in your country than Ireland?

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Autistics should be listened to.

Autistic people can speak for themselves if people would let us.

Autistic people speak for themselves

Irish Autism Activism

Domiciliary Care Allowance - Review 2012.

The blatant discrimination against Ireland's Autistic children continues...

Behind closed doors with no publicity about it the Domiciliary Care Allowance is currently under review. Since the application and decision process was moved to the Department of Social Protection.

A group was set up in the early summer to oversee this review. However no individual parents are allowed to have their say at these meetings instead they are to be represented by groups such as Autism and Special Needs Parents groups and other officials from governing bodies who they say will speak for us all.

Instead I have to fight every battle myself as do most Special Needs Parents in Ireland. In the final week before the closing date for submissions for this little mentioned 'review,' I very recently finally got a letter saying individual parents too are entitled to make a submission as to why they feel Domiciliary Care Allowance is very important for the support of their Special Needs child. Below is this submission.

Make no mistake though whatever the outcome of this 'review,' it will mean less Domiciliary Care Allowance for Autistic and children with Psychological Disabilities in Ireland and this whole 'review,' thing is a charade to bring in lower rates of pay and other rules to make D.C.A. harder to get. Then if there is a whimper of protest about this the powers that be will jump up on their platforms and say, 'you all had your chance. You all had people representing your children at 'our review.'Why didn't they speak up then?'

This is my own submission/rant about the problems with autism services in Ireland. I would love some feedback on what it is like in the rest of the world? Is Ireland number 1 for crap autism services and no voice for autistic people or does somebody out there know of a worse place for autistic people to live???

Review Group on Domiciliary Care Allowance Public Consultation

1. About my submission – Introduction

  • I am the parent of a child who currently has a diagnosis of autism and developmental delay. I feel very strongly that Domiciliary Care Allowance is a vital payment for all Special Needs children.Often autistic children may not appear to have a disability because they don’t have physical features of the condition. Also I feel in Ireland from my own experience that children with an Autism Diagnosis may often be overlooked or misunderstood because there are no obvious physical characteristics to their condition (although that is not always necessarily so).
  • Also the Irish state is already failing these children continuously by not following through on the promises enshrined into Irish law under the EPSEN Act 2004 and the Disability Act 2005. The Irish government continues failing Autistic children so miserably at the moment in so many other ways that they cannot also take the only life-life from their parents that allows these children any access to services which the state are either not providing or reducing every day now in the current economic climate. I will elaborate on these shortfalls more during the course of my submission.
  • I am a woman in my thirties who only received an Aspergers Syndrome diagnosis myself in the last year. I grew up without any ‘label,’ and I feel it is unacceptable in this day and age in a first world country that this should still be allowed to happen due to ‘the politics behind Autism in Ireland,’ and the ethos that somehow giving a child a correct diagnosis for their condition and giving them the help they need is not more important than ‘labeling them.’Personally I know how much of a difference it could have made for me to have grown up with the help and support that I should have had. Therefore I will not stand back and watch the same thing happen to my son because there is a mistaken belief that Autism is a lesser disability to any other i.e. the autistic child needs less therapy or support.Autistic children in Ireland have a basic human right to have the support that they need at a young age so as to avoid all the pitfalls that regularly occur later on because they never get a diagnosis or they get it at a very late stage as I did when many psychological issues have already manifested themselves.

The Objectives or purpose of Domiciliary Care Allowance (payment due to be cut although official story is 'it is being reviewed to make it fairer!')

What is Domiciliary Care Allowance for in my opinion?

  • My understanding of the purpose of Domiciliary Care Allowance is that is a payment made by the state to help parents cope with the additional costs associated with having a Special Needs child i.e. it is the states way of acknowledging that to care for this child in a state setting would cost substantially more than for a carer to care for the child at home.Also it is the states contribution to help a family pay for the additional therapies and equipment that a Special Needs child requires to have a reasonable as possible quality of life.Therefore it is automatically understood that every child who is diagnosed with a disability has additional needs i.e. they require more care and attention than a typically developing child of the same age. So then they will require therapiesthat a typically developing child will not.
  • Some of the more common examples are:
  • · Many autistic children require a different more expensive diet along with Health supplements
  • Auditory integration equipment
  • Speech and Communication aids
  • Sensory equipment and clothing
  • Additional toileting aids to name but a few items
  • Then there are the many therapies required which are either not provided by the state or are provided in a totally inadequate way due to the current serious lack of resources
  • Personally I feel that if these children’s parents are to have any hope of giving their Special Needs children the best possible chance for the future then it is denying these children, their basic human rights by taking away the support of the Domiciliary Care Allowance when to date every other government assistance has already been severely cut or removed.As it stands the current payment of Domiciliary Care Allowance to autistic children is not a huge amount of money if you take into account what it would cost to have these children in care if their parents just cannot cope anymore because of the current strains that are on them financially, emotionally and as a family unit because their child has a disability.It is totally immoral and unjust to take a payment from autistic children who are being failed so miserably in every other way in the present economic climate

Some of the cuts already being faced by autistic children and their parents:·

  • The withdrawal of Special Needs Assistants
  • The slashing of resource hours
  • In many instances the total absence of Occupational Therapy
  • The refusal to introduce any state funded Sensory Integration Therapy
  • The reduction of all autism services including the ever increasing backlog of diagnosis which is in total contravention to the terms agreed under the Disability Act 2005
  • A reduction in travelling allowances to transport a Special needs child to the nearest available school
  • The reversal of practically everything that was supposed to protect the rights of Autistic children under the Disability act 2005
  • There is currently a total disregard for the promises enacted into Irish law under the terms of the Disability Act 2005. The implementation of this act is now being blatantly ignored and the more parents of autistic or developmentally delayed children I talk to about their children’s supposed entitlements under the implementation of the Disability Act 2005 the more obvious the shortfalls in the implementation of the Disability Act 2005 actually become.
  • Also I would like it noted that I am entering my own personal submission on this matter because at this stage I know that there is no charitable group or advocacy organization out there in this country who I feel will adequately speaks for me or my child. I have contacted all the ones that I have come across and none of them to date have been in anyway proactive in helping me or my son.Therefore I also want it noted for future reference (as I intend to look into the legality and the moral authenticity) of all these negotiations about the ‘review,’ of the Domiciliary Care Allowance and other services for Autistic and Special Needs children being carried out behind closed doors with representatives of certain groups whose sincerity and interest in helping me or my son I have come to doubt in many instances. Personally I have been threatened and intimated by certain members of some groups who incredulously claim to be interested in the welfare of people with autism. Yet I am one such person and I have received little support or help and neither has my son.

There is no-one to speak for my son in Ireland except me.

  • I do not think it is right that there are many parents like me who in fact have nobody to speak for them and I find it incredible in this day and age that the citizens of this country are being dictated to in this fashion. I could not believe it when I was told that as a concerned parent I am not entitled to attend any meetings about the review process for the Domiciliary Care Allowance i.e. a payment that if withdrawn will seriously affect my child’s future, because I am not a member of a certain group who our government have now just dictated to us that these very people who have been of no help to me and some who have even hindered me in helping my son will now be among the people allowed to speak for me and yet I am forbidden from speaking for myself? Is it the Soviet Union or Ireland I am now living in I am unsure at this stage.

1. The Application Process for Domiciliary Care Allowance:

  • At present the Medical Report in the Application form for Domiciliary Care Allowance is obviously not suitable for children with Psychological/Intellectual Disabilities. I also feel it is not acceptable to ask a doctor who may know very little about Autism Spectrum Disorders to be able to fill out a form for such a child.
  • In general it appears that the vast majority of doctors do not understand the full portfolio of difficulties that any autistic child has or maybe the doctor might also be uninterested or misinformed or just not aware of the difficulties involved with having an autistic child.Inevitably this is then obviously going to come against this child in the processing of an application form for Domiciliary Care Allowance. It is then unavoidable that many very important difficulties that this child has with everyday life are surely going to be omitted and just not taken into account at all when the Deciding Officer or the ‘Independent Medical Advisor,’ are deciding how much care and additional attention this child really does need.
  • In fact personally my own doctor at the time I was applying for Domiciliary Care Allowance said he had no idea what to write down on the Medical form and at the time although my son already had opinions from a top European Paediatrician and many others within the profession that Adam had difficulties my doctor was totally unknowledgeable about Autism Spectrum Disorders. At the time all of my son’s paperwork had not yet been received by me and I was very distressed as I wanted tog et my son into an Early Intervention program and I was left feeling very upset at a time when all I really needed was some support. I felt my doctor thought I was exaggerating but subsequently it was proven that everything I said was verified by reports from appropriate professionals and a correct assessment of the situation was given albeit much later than I would have liked.
  • When I personally was applying for Domiciliary Care Allowance for my son I felt very intimidated and was made to feel that I was imagining that my child had Autism because my doctor didn’t understand the nature of autism and was just a totally unsuitable person to be expected to fill out a psychological Assessment Report for a child. He would have had no such trouble if it had been a physical condition and I felt very distraught by having to try and prove my son had difficulties at a time when I was trying so hard just to come to terms with the autism diagnosis. I don’t feel it is fair to expect doctors who are not trained in autism to fill out a form about how it is affecting a patient. Therefore a GP should not be involved in the assessment process for autism or any other psychological disability unless they are trained in these areas.Instead this should be the task of a Doctor who has specific training in Autism or an Educational psychologist or another person involved in the assessment process for this child.Once a person actually manages to get the Domiciliary Care Allowance form sent off the period it then takes to process the application is excessively long and when I then repeatedly made enquiries by phone I got practically no information on my son’s application for the first six months or even an indication as to what stage of the processing it was at.
  • Also I think it is extremely insulting for parents who are devastated and trying to come to terms with an Autism Diagnosis to receive a standard impartial letter saying‘yes your child has a disability but we still don’t feel your child needs anymore care and attention than any other child.’

When parents are already down they get told yes your child has a disability but.....

This is a completely insensitive way to treat heartbroken parents who are at their widths ends already and are just trying to learn how to cope with a child who has all sorts of unexpected difficulties. Now just to add to their troubles they are being told that their child should be able to manage fine without any financial assistance even though the actual services available to them are becoming fewer and fewer every day. I think this is a very unacceptable way to treat vulnerable parents and their Special Needs children.

2. How people should be treated in a modern progressive society.

In relation to communication with parents about their applications I think if additional information is required (which seemingly it always is despite the fact that my initial application was about twenty five pages in total and went into great detail as to the additional care my son needs on a daily basis).Parents should have access to the so called ‘Medical Experts,’ i.e. a list should be compiled of who these people are exactly and what their credentials are to assess the cognitive abilities of each child in question. On request each parent should then be given access to the person who has made this decision about their child and also they should then be offered an Oral hearing process where the ‘Medical Expert,’ can then meet the child and then decide what level of assistance they require. How else can they know exactly what each individual child needs in terms of additional care?
Decisions can then be better communicated by explaining to a parent why their child doesn’t meet the criteria for Domiciliary Care Allowance, although it still remains unclear how a child who has been diagnosed with a disability that requires extensive early intervention services, a lot of additional equipment and twenty four hour care in any case can then be considered not in need of additional care and support?

3. The Review Process

As long as a child is still diagnosed with a disability I don’t see how at review stage it can then be decided they no longer have a disability now? Before Domiciliary care Allowance can be removed from a child the Deciding Body should have to prove that the child no longer has the Disability i.e. the child would need to be reassessed to prove this initially.It is also totally unfair to stop the child from receiving the help they need while they are on a waiting list to be reassessed by the state. Therefore either the re-assessment process should be carried out within a month (highly unlikely I would imagine) or else the payment should be continued until the state can then prove that this child no longer has this disability because until they have the child reassessed how can they know what level of care and attention the child requires at that stage?The review process should involve the same suitably qualified people who initially assessed the child to begin with i.e. a psychologist, a Speech Therapist, an Occupational Therapist, a Social worker and any other professionals who work with the child on a regular basis. E.g. Special Needs Teacher, ABA Tutor, Sensory integration Therapist etc.,A new assessment report should prompt a review and the assessment report along with any other current progress reports such as an I.E.P. or a report from other independent professionals that the child might currently be attending.

4. Rate of Payment of Domiciliary Care Allowance.

At present the rate of pay of Domiciliary Care Allowance is €309.50 per month. Every child with a disability requires a lot of additional care and therapy. The difficulty with Autism is so much is still unknown in how to treat it and therefore parents who just want to do everything that they can to help their children. This then makes it is very difficult to know how the government would intend to decide what level of disability will merit what payment amount? This would have to be a very carefully considered and a very long and detailed assessment process would need to be scrutinised before any such action should even be proposed never mind agreed upon. I would advise extreme caution as quantifying a disability can be a very individual process unique to each case.While a child with physical disabilities will need additional help medically they may be able to access this with their medical card whereas a child with a psychological disability has no such option in relation to a special diet or in relation to therapies that are not currently recognised by the state.

Some examples are:·

  • Sensory Integration therapy
  • Special clothes to minimise sensory issues
  • Special bedding due to the child being unable to use the toilet yet
  • OT equipment for use in the home
  • Payments for private Speech Therapy and Communication aids such as PECS, Communication devices and Ipads etc
  • OT Therapy and also as in my case private OT and SLT require me to travel substantial distances as this therapy is only available in Limerick city or Killarney town both of which are about 50km away from me.
  • While the autistic child may be mobile this can often be combined with hyperactivity and a lack of awareness of danger. This then requires constant, on-going supervision and sometimes a parent is really stressed out from this and may need some home-help hours or respite and at present with the cut-backs in these areas too what are hard pressed parents going to do if their Domiciliary Care Allowance is also reduced?
  • Personally my child is only just turning five but I know he requires as much time, effort and care as he did when he was a year old and I have no idea if or when this situation may improve and I would be devastated if his DCA was reduced at this stage
  1. 5. Appeals Process for Domiciliary Care Allowance

5. Suggestions for any changes to the operation of the D.C.A.

  • If a child has a diagnosis that states they do in fact have needs in many areas then the Deciding body should not then be able to turn around and say the child doesn’t need any extra help? This statement just makes no sense as the child already has a diagnosis and has gone through an assessment process that immediately refutes this statement. It is just an insult to some of Ireland’s most vulnerable children to even utter such a farce of a statement never mind put it in writing and stand by it.Special consideration should be given to Special Needs children in counties where there are very few services available to them or they are very far away and they absolutely need the Domiciliary Care Allowance to have any chance of receiving even a minimal amount of therapy.
  • As an example of this in Co. Kerry at present there is only one Autism Early Intervention class in the whole county that provides the recommended number of hours of early intervention to a child with Autism per week i.e. in excess of 20 hours and this is a 32Km drive away from my home in Tarbert, Co Kerry.Due to a serious lack of resources in the Kerry Autism Services, Speech Therapy and Occupational Therapy which are proven to be essential to an Autistic child’s early intervention program are not adequately provided for autistic children at present in Co Kerry. Then even the private services are extremely limited and to avail of any private therapy whatsoever it is always necessary for parents to travel to county Limerick or Killarney which is an hour and half’s drive away from me.

There is currently very little or no provision within the Kerry Autism services whatsoever for providing the following due to the current lack of resources:

  • Sensory integration Therapy
  • Auditory Integration Therapy
  • Music Therapy
  • Swimming lessons
  • Dietary advice
  • ABA Therapy
  • Communication aids such as communication devices, Apps or Ipads Or any of the other recommended therapies that any expert will tell you can make all the difference to the quality of life of an autistic child.

Also the Domiciliary Care Allowance is crucial to providing the following for children with Autism, Developmental Delay, Intellectual Disabilities and other Psychological Conditions:

  • Sensory aids
  • clothing and equipment such as Gym equipment, trampolines, weighted vests and blankets,
  • The brushing program and the many other additional items the autistic child needs to have any quality of life in some cases.


  1. My son is five and still non-verbal and still needs assistance with everything and I feel the Domiciliary Care Allowance allows me some additional funding to make Adam’s life more comfortable which in turn takes the pressure off me and the rest of the family.
  2. Also every parent I have met uses the DCA scheme to help pay for the additional cost of having an autistic child such as the additional costs I have listed above. I think this is a very good use of the money and is only a small contribution from the state when you take into account the dedication and hard work that the parents of an autistic child put in every day.
  3. I feel it is very justified to give this money to autistic children because of how the state is failing them in every other way i.e. by not diagnosing these children in time i.e. under the time frame stipulated under the Disability Act 2005, the guidelines of this act are being ignored and because of this parents and their children are suffering much more than they should have to and I feel taking their Domiciliary Care Allowance away would be the final nail in the coffin of the state washing their hands of these children and indicating that they are not even entitled to basic therapies.

Also I feel parents such as myself should have the right to attend meetings which affect our children if we decide that we wish to speak for ourselves and feel that no particular group speaks for us specifically.


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    • thewritingowl profile imageAUTHOR

      Mary Kelly Godley 

      5 years ago from Ireland

      Thanks for comment cfin but the autism services here are genuinely very bad and there is a lot of money being given to charities which is not being used to subsidize therapy for the many children who desperately need it. As a woman who has grown up with undiagnosed Aspergers I want better for my son than being told by doctors. 'he's grand, ignore it and he'll grow out of it.'

      I appreciate what you are saying too though about the problems being a global issue and I know in America the charity Autism Speaks is well known to be about raising many millions every year and only using something like 4% of it to actually help people with autism so the problems with Autism are certainly global and not just an Irish issue.

    • cfin profile image


      5 years ago from The World we live in

      Hi thewritingowl. My cousin in the Usa is autistic. As a classic Irish person, as I did before moving here, you always point out how Ireland is at fault. It's less an Irish issue, as more an international problem. My cousin was diagnosed with autism 2 months ago. He is 13.

      Having grown up in Ireland, I was always highly critical. Always telling everyone how horrible it was there. It wasn't until I moved here 3 years ago, that I realized that I had made a huge mistake. My wife is from here, and our daughter was born here. We pay $1460 a month for health insurance. We have encountered similar delays to what I have in Ireland. only we are treated less humanely here.

      I think as Irish people. We are very humane. We feel that our fellow people deserve the best. It's what I miss he most. The problem is, that We come across as being from a 3rd world country as a result. People here are the opposite in that they always say how great their country is, even when the health service here is even worse, perscriptions cost more even after paying the monthly premium, as does any other service.

      Services in Ireland leave a lot to be desired, but keep in mind, other countries are no better. People just like to pretend they are. The greatest thing that Irish people have in 2013, is our ambition to not look a that. We do deserve better. The resources that the govt have at their disposal should insure that every child with autism should have the treatment at their disposal.

    • thewritingowl profile imageAUTHOR

      Mary Kelly Godley 

      6 years ago from Ireland

      Thanks for comment, if anybody has any more info about Autism Speaks would be interested in hearing that too.

    • wmhoward4 profile image

      William A. Howard IV 

      6 years ago from Baltimore Maryland (USA)

      Very informative. I will share it with some parents in the US.

    • thewritingowl profile imageAUTHOR

      Mary Kelly Godley 

      6 years ago from Ireland

      Thanks very much its good to know that but I still think if you have parents who have pleaded with groups to help their child and they haven't in any way and they have even sent you very ugly emails then that does tend to reduce your confidence in their ability to advocate effectively for your child.

      There is no voice in Ireland for the 'autistic parents,' of autistic children, lets face it someday all the kids of the groups that are for 'the parents of autistic kids,' are going to grow up to become adults with the same views and ideals as people like me so shouldn't we be allowed a say in matters that affect children who are like us?

      Any effort for me to have a say has been interfered with. Also are there any representatives in the NGO group who actually have a diagnosed disability themselves? A good example of someone who I think would would be a great asset to this group is Orla Tinsley who is also a writer, a journalist and lives with Cystic Fibrosis. She is the type of proactive individual I would like to see speaking for my child, until then I will have to continue to do it myself. Thanks very much for your comment and I am not saying all groups are ineffective and only interested in protecting their government funding just the ones I have come across. I would love to get in touch with others groups so if you know of any proactive group then please do let me know, I am still hopeful there may be one of them out there in Ireland somewhere.

    • profile image

      Mum of SN children 

      6 years ago

      The NGO / parent reps on the review group all happen to be parents of sn children. Two coincidentally are parents of a child with ASD and a third a parent of three children with ASD. All NGO reps are also volunteers. I agree completely with the sentiment of your views but just thought I would point this out to you.


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