Mr. Tom McLoughlin:

Good morning. Members have our written submission so I am not going to go through it in any detail, but it will form the background to what I am going to say. My wife threw me under the bus, so I will be the one speaking today instead of her. We have two kids, one with a profound intellectual disability and one with a much milder one. Therefore we are blessed with a wide array of experience in relation to that. Our oldest is 31 years of age and our youngest is 23 years of age, so it has dominated our lives for that period. All of that has required high levels of advocacy as parents for our kids.

Having said that, I will split our comments into the different life stages. The first thing, by way of contrast, would be to look at the educational system. With the educational system there is something tangible, there is something which is decipherable, there is a degree of commonality and there is a kind of an infrastructure. Currently our two sons are in the adult stage, and the central part of it is that there is a vast array of extremely difficult to decipher services. Even when you manage that, there is an inherent difficulty, or absence, in terms of the infrastructure. We will go through that in a little more detail later.

Looking forward to when we are no longer around, or are no longer capable of helping or caring for our two sons, to date there has been no discussion or no preparation. From that perspective, it has to be the State. This is not a welfare issue but just a simple common sense issue. At the end of the day a service eventually gets delivered, but the issue is how good or bad that service is. There is a great absence in relation to planning for the stage when parents who currently are the primary carers and the primary advocates are no longer able to care for their children. There is very little in the way of inheritance planning and planning for future life.

On the current state, I basically have summarised the aspects in relation to it in points one to ten of the document members have received. First, it is extremely difficult to decipher what is available coming out from educational services. You are coming from something that is tangible, that you can see and understand, and going to an adult service which you expect to include something real and tangible. Yet after 12 plus years, our conclusion is that there is not anything, or much, tangible, or there is a huge gap in physical or organisational infrastructure for adult services. There is a vast array of different service providers. The service providers are operating what is almost like an educational system without a college, without a syllabus and without a training programme, and almost equally there are issues in relation to staffing, etc., for it. There are many different agencies and it can be very difficult to decipher what the different agencies offer. It is probably impossible that any of those agencies can of themselves provide the necessary infrastructure.

Once our sons found placements, I would contrast the physical infrastructure with that of second level. By the way, all of this is financed by the State, so it may have a perception that it is a money issue, but it is not. The reality is that the infrastructure where our younger son of 23 was going, out to an industrial estate in Tallaght, was not and is not fit for purpose. I would say the alternative cost of having that service provided on a third level campus site, for example, would probably be lower for the State. Therefore the physical infrastructure is absent, as far I can see.

I am still trying to figure out the placement content, that is, what our sons do once they are in a placement. Each week we will have a timetable for our son, and the timetable is variable. However, to a huge extent, it has been made up on the hoof. By and large, this is because there is not a syllabus, a training development programme, which is coming from the top and which is capable of being rolled out for all of the different service providers.

Looking at the staffing of the service, in the interest of time I will pick one aspect, which is psychiatric services. Most of the kids, and I will keep calling them kids, in this area have a need for a medical module. The primary issue in relation to that is the availability of psychiatric services. If there is a difficulty with accessing the psychiatric services it basically leads to a multiplicity of problems which will dwarf any expense, etc., in relation to the fact that the psychiatric services are not available up front. By and large, our experience is that when you look at different services, some have them and some do not. They are all funded by the State but a psychiatrist who is working for one organisation cannot cross over and provide psychiatric services for another agency. We have faced this dilemma when talking with the providers for our two sons, which are different agencies. We talk to the same psychiatrist and we know that psychiatrist could do a lot for our younger son, but that psychiatrist cannot provide a service for our younger son because they can only wear the shirt or the jersey of one provider.

The hours are incredible. The best description of the hours is that they are pre-school. It is not 9 a.m. to 5 p.m.; it is nothing like that. For those who are high-dependency there is no evening or weekend service. I am of a certain age, which members can probably guess. I am over 60 years of age, and at this stage I am still the primary social outlet for my two sons, which cannot be pleasant for them. First of all, there needs to be a proper 9 a.m. to 5 p.m. service. My wife has not been able to work for more than 30 years, and it has also impacted on my own employment situation. I need huge amounts of flexibility, so I am self-employed. I do not think any employer could tolerate the amount of time I have to dedicate to my two sons. There is a paradox in the support ratios. If you look at kids as they grow into adults, the support ratios as adults mature, develop and become more independent go up rather than go down, which is its own commentary on the efficiency of how the services are currently structured.

There is at best a haphazard overall governance. I do not think the HSE manages it actively. All of these years we have sought clarity on the amount of funding which is involved. We have a decent idea and we know it is a lot of money in the case of our older son. We know it is not a huge amount of money in the case of our younger. However, I would query whether there is a neutering as such of the parents' involvement because the service providers may be a little bit defensive in relation to it, but the HSE does not volunteer that money as well. We are, therefore, operating in a vacuum in relation to that.

I have included some suggestions in the document. What is the expected outcome? I think that to date, unemployment is not just the norm but the overwhelming outcome, even for people who can provide a decent service or output to society. It is just not working and at the moment there is vast unemployment. I would say it would be more than 90%.

That includes supported employment, community-based schemes, etc. The system is not working. We have itemised a number of different things that could be done for immediate wins. In the early stages, it is more about integrating the adult services into the educational, training and employment world, rather than this nebulous world of individual education plans, which is probably a generous description. There is a need for something far more tangible. If it is measured based on outcomes, the quality of life for our two sons is not good. The only reason that it is somewhat decent is due to us. We are aware that major resources are being thrown at it but there is no overall plan. Without an overall plan, the expected and actual outcomes are terrible.

We are at the stage where we can maybe hope for another ten or so years of being able to be active. To date, there has been no discussion about what the situation regarding advocates and active carers for our sons will be when we are either not around or not capable of providing a service. We should have some plan to put in place. In my work, I provide financial planning advice regarding inheritances and so on. I know this area. We are operating in a vacuum with regard to our two sons. There is nothing that we can advocate for or any independent living infrastructure for when we are no longer around or that will gradually take over. I do not believe that there is any planning to put that in place. We have been left out in the cold.

If members read the rest of the submission, it fleshes this out. I wanted to try to summarise it and give a flavour. They will hear from the other speakers and I will be available to take any questions. I thank the committee.