John O'Mahony (Fine Gael) | Oireachtas source

First, I commend Senator Reilly on introducing this Bill and on all the work and effort he has put into it. In recent years there has been more awareness of the autistic spectrum. Years ago it was just known as "autism" and the word was associated with people who had profound communication and behavioural difficulties. I taught for many years and I thought I was teaching disruptive pupils but that was not the case. Things have moved on but it has been a slow road.

There is more awareness now, which has come about, almost accidentally, through the media. We sometimes criticise the media but some television programmes educated us on the issue. There were American and British television series where families had children on the spectrum, and through these kinds of programmes many people learned about the difficulties that people with ASD and their families face. We need to have a high-profile public awareness campaign, early screening and early intervention. We need a one-stop shop, consistency and awareness on the part of public servants, housing officials, the Garda and the public in general so they do not misinterpret the sometimes quite literal conversations and challenging behaviour of people on the spectrum.

I am pleased that this Bill has come to the Seanad this week as this is mental health awareness week and many people on the spectrum - and indeed those who care for them - have mental health issues. I have no intention of going over the provisions of this Bill section by section, but I note and welcome the stated purpose of the Bill, which is to address the inconsistency which exists across the State in respect of both the availability and type of services that are accessible to children and adults with autism spectrum disorders. We need consistency and to ensure that everyone gets the same services regardless of where they live. We need to ensure they are an entitlement and not a perk.

I will talk about my interaction as a public representative with parents of children with ASD and I am sure my colleagues have similar experiences. The first problem parents come across is school admittance. I heard from one parent who received a phone call to say her child been granted a place in junior infants class as they had a cancellation, had one place available and her child was next on the list. She told the principal she would take the place and then told her that the child had just been diagnosed with ASD and ADHD. She was immediately told that the school could not take him as it did not have the facilities and it was too late to apply to the National Council for Special Education to have them in place for the following September. She appealed to the board of management of the school but it was too late for her child for that year and it was pointed out to her that she did not have an offer in writing.

This boy had been referred to the early intervention services with the HSE and had home tuition until a place in mainstream school was found for him. However, it was all a struggle, a battle and a fight for entitlements. My secretary asked the young mother of this boy if she was in receipt of the domiciliary care allowance. She had never heard of it. She was a young, single, working mother, struggling to pay bills and rent in private rented accommodation and, despite the fact that she had been dealing with the HSE for over two years, not one person told her she would be entitled to this allowance. Eventually she got it but getting it was not easy. She did not have copies of every assessment, every doctor's appointment, every psychiatrist's report, every speech and language appointment, every occupational therapist's appointment or details of every time she had taken him to an accident and emergency department when he had injured himself or broken a limb. Even if she did have all this to hand, she certainly did not have the facilities to photocopy them. That young mum was able and articulate but still needed help to get her entitlements. There are many parents of children on the spectrum who are not as able or articulate and who perhaps have learning or intellectual difficulties themselves. I believe that every family with a diagnosis of ASD needs to be allocated an advocacy person. I believe that the Department of Social Protection needs to simplify the application process.

I want to talk about the Department of Social Protection because this is something that I know about as well from my work as a public representative. I am constantly horrified by the number of applications for domiciliary care allowance and disability allowance that are refused. I am equally horrified by how many of them are allowed on appeal. The 2015 annual report of the social welfare appeals office shows that in 2015, 313 out of 837 domiciliary care allowance appeals heard were successful. That is a huge percentage and, in effect, it means that 313 parents who should have been entitled to domiciliary care allowance for their child were turned down in the first instance and had to go through the process of an appeal before they got their entitlement. I am aware that domiciliary care allowance is not just for children on the spectrum but is for all children with a severe disability who require ongoing care and attention. The parents of all these children are concerned, worried and worn out, trying to love and care for their children to the best of their ability and who knows how many of them do not have the time, the energy or the inclination to appeal decisions. The figures show that a huge amount of those who do appeal are successful.

Of the 5,220 who appealed disability allowance refusals, 1,443 were allowed on appeal. Again, that is 1,443 people who were in the first instance entitled to the allowance but had to go through all the hoops of an appeal before they got their entitlements. I believe that this Bill, in setting out the implementation of a cross-Departmental, multi-agency autism spectrum disorder strategy, will ensure that people get their entitlements. It is hugely important that we are all more educated about the difficulties and challenges of the autistic spectrum and that those who live with the spectrum should receive easy and equal access to services. I am satisfied that my colleague, Senator Reilly, has, with the introduction of this Bill, made great progress towards this becoming a reality.