Tom Clonan (Independent) | Oireachtas source

I thank the witnesses for coming in. It is very much appreciated. I am delighted to see the speech and language therapists here. My son has benefited hugely from interactions with speech and language therapists, occupational therapists and physiotherapists in the Central Remedial Clinic and in Temple Street hospital over the years. I know how hard they work on the front line and how stressful and pressurised it is because the need is so much greater than the resources.

I have some questions about assistive technology, but I want to put them in an Irish context. There is a great body of international literature on assistive technology and the game-changing effects it can have on people. Much of that literature is based in jurisdictions that I would characterise as being not perfect, but something approaching normal.

Ireland is not normal. It is an exceptional jurisdiction when it comes to these issues. As others have said, assistive technology is a means to an end and not an end in itself. I often hear laypeople in our public discourse describe assistive technology as a great way of making things more accessible, but from our experience during the Covid pandemic when everything went on to virtual platforms, it further isolates people with additional needs. My son Eoghan is 20 years old and when he is not in college, he does not have any personal assistance, PA, hours. He does have a large iPad as his eyesight is restricted, but he does not have a personal assistant to plug it in, charge it and hand it to him during the day. Basically, he has use of it until it runs out of power. This summer, he watched all the seasons of "Friends", which is great, but it would be wonderful if he actually had friends. He cannot have friends in Ireland because he does not have those PA hours.

It was mentioned that we can legally oblige the services to provide an assessment of need but in Ireland, unlike Northern Ireland, Wales, Scotland, England, Germany and other European Union countries, we cannot legally oblige the State or its agents to provide therapies. In the absence of therapies and PA supports, assistive technology becomes more or less meaningless, which I am sorry to have to say. By way of an example, I am very familiar with Eyegaze technology and know how wonderful it is, but because of untreated nystagmus Eoghan was not able to use the equipment. While this is not a criticism of speech and language therapists - they are amazing people - my son has not had any speech and language therapy since about 2007, before the crash, and even then, it was quite intermittent. He has dysarthria scanning speech that is untreated and, as a result, he cannot use the technology. He has managed to get Google to work but with great difficulty and sometimes he has to ask me to help him get Google to play a playlist for him. That is because of an untreated condition. If he were in any other country in Europe, these conditions would be treated. This is across all the therapeutic interventions.

The former president of Dublin City University, DCU, Professor Brian MacCraith, reached out to us as a family saying the university had this wonderful exoskeleton and physiotherapists and he invited us to visit to see if Eoghan would respond to the exoskeleton. However, due to a lack of physiotherapy intervention, it was deemed Eoghan was not suitable. He also had untreated scoliosis which meant he was twisted down. Imagine how humiliating that would be for a teenager. He was shivering with excitement when we went to DCU, but when we got there the physios told him he was not a candidate for this type of technology.

The technology is only one piece. In Ireland, in the situation in which we find ourselves and which we have inherited - this is not a criticism of anybody here - these are moot points. It is very interesting but it is not going to make any meaningful difference unless we get the basic building blocks in place.

The hubs and excellence in the UK and the PDS model we have in Ireland were mentioned. Is there a model of service provision in any other jurisdiction that the witnesses would say is working really well and we should have in Ireland?

Multidisciplinary and interdisciplinary teams were also mentioned. In the absence of a social care Act, or its equivalent, and in the absence of an amendment to the Disability Act to legally oblige the HSE to provide therapies for children, the only recourse we have as parents is legal recourse. If something goes wrong in cardiothoracic surgery, it is the surgeon who is legally responsible and we go to his or her insurance or employer for redress. The situation is similar in respiratory medicine and other areas of medicine. However, in the area of additional needs, do the witnesses agree that because there is no legal obligation on the State to provide the services, the head of the multidisciplinary or interdisciplinary team must be a medical practitioner, either a paediatric neurologist, a paediatrician or, in the case of child and adolescent mental health services, CAMHS, a child and adolescent psychiatrist? Giving the deficiencies in the models, no one else can head up that team. It cannot be another member of the team because we do not have the proper legal framework within which to progress redress in a PDS model that has changed.

My final set of questions is open to anyone to answer. I followed the roll-out of the PDS model. Who designed it? Did a medical practitioner sign off on the PDS model? Was a clinical risk assessment of the model carried out and, if so, by whom? Who is legally responsible within the HSE-CHO system for the PDS model?

I know I have asked a lot of questions. The witnesses do not have to answer all of them. If they can answer any of them, it would help the committee to navigate our way out of a system that has failed to one in which assistive technologies could realise their full potential for our young people, young adults, older people and those with dementia who really need assistance.