Mr. Mark O'Connor:

I thank the Co-Chairperson.

For the 1,500 school leavers mainly with higher support needs in terms of intellectual disability and autism in 2018, the only option they will receive is a HSE funded day service and a life on disability allowance. On average, the cost of that is not insubstantial to the State; it is approximately €25,000 a year. That is what the State is investing in something we know is not good and is often exclusionary for people with disabilities.

To give an example, in the HSE’s New Directions - Personal Support Services for Adults with Disabilities from 2012, which has yet to be implemented, people with disabilities were surveyed on what they thought about day services. Much of the time they said they were bored, engaged in meaningless tasks and had very little scope for progression within a day service, yet we continue to funnel people with intellectual disabilities in particular and school leavers into these services. That represents a lack of ambition.

We know from research done recently by the Walkinstown association that one of the main barriers to employment and further education is that there are very few courses at Quality and Qualifications Ireland, QQI, levels 3 and 4. Courses at this level are accessible to people with intellectual disabilities but when they access at this lower level of course, they then build up to level 5, 6 and so on as shown in the real life example given by Mr. Murtagh. The entire area of apprenticeships and traineeships is underdeveloped for people with disabilities.

At the Inclusion Ireland conference, Mr. Murtagh referenced earlier, the disability service provider from County Kildare, KARE, presented on a traineeship programme it piloted called Project Search in Naas General Hospital. At that particular time I believe it had ten or 12 young people with disabilities. It was a nine months internship period and the people on it got to spend three months in different parts of the hospital. It was training around real life jobs with ordinary people in a very ordinary working situations. Examples of excellent practice such as that are more the exception rather than the norm and with the HSE under a new direction it is something that can be pushed.

Solas is undertaking a review of training and apprenticeships. That review should include training for jobs that are suitable for people with intellectual disabilities and lead to real jobs paying a real wage. The Government agency, Employability, helps people with a disability to get jobs, and it is very good at what it does. However, it has quite a narrow scope of employability, which is to do with people who are job ready. That is a difficulty if a company wants a personal assistant, PA, or someone wants a bit of on-the-job support to get them started. We recommend that where people with a disability have a desire to work the appropriate service that will enable them to at least get into a company should be available because often we find that can be tapered off.

Inclusion Ireland is mindful that the cost of disability is a difficulty for people living with disability. In terms of what is available to people with disabilities, when they leave school they generally enter the disability allowance scheme and nothing happens until whenever. There is little engagement from the Department. We know the Department has great ambition under Make Work Pay, which is very welcome, but even when they get into employment people with disabilities have significant costs. Those costs would include transport and simple costs such as additional heat in their homes. Someone who is a wheelchair user has the heating on 24-7 during the winter. That is a significant cost for them. When all of us go out to work, the heating is turned off. People with physical disabilities might have to buy prepared foods, pay transport costs, specialist aids and equipment costs and so on. A number of studies have put the cost of living with a disability in Ireland at between €200 and €270 per week.

There are schemes in place that we would consider to be cost of disability schemes. The now closed motorised transport grant and the mobility allowance are cost of disability schemes. They recognised the cost of getting people to work. Prior to our submission on budget 2018, we consulted widely with disabled people and the mobility grant and the motorised transport scheme came up frequently. Some people said that a priority was the reinstatement of the mobility grant, that it has left families in desperate financial distress and many disabled people in rural areas without transport. Another person said that there should be more bus routes for people living in rural areas, more frequent buses in towns and that community life is essential for good mental health and social interaction. Inclusion Ireland recommends that at least some thought be put into the establishment of a commission to examine the true cost of disability and that the advancement of the proposed Health (Transport Support) Bill should be a priority for the Oireachtas.

With regard to personal budgets, the personal budgets task force has reported to the Minister. It is very welcome that this is coming to fruition. We believe the roll-out of personal budgets will have a significant impact. A person with a disability with their own budget may choose to spend that on a PA support that will enable them to get to work, a course in their local education and training board or whatever. I do not know if this committee will have any influence but there was an exclusion of children within that, with no rational for it. The research conducted for the task force indicated that children were included in other jurisdictions but we decided not to do that.

There seems to be a mean-spirited narrative throughout the report in that we are holding people with disabilities to account for every euro they are getting, and rightly so. Nobody is saying people should be given money and allowed go off and do whatever they wish with it but the accountability within it seems to be burdensome. If I was a person with a disability pursuing a personal budget, I would look at that report and think it was more hassle than it was worth.

There were 32 individual items of training a person with a disability would need to manage a personal budget. If any of us saw 32 items of training in anything we were going for, we would opt for something easier.

I want to touch on the public sector's equality and human rights duty. All Departments and the HSE are required to have regard to that duty in all activities as provided for in section 42 of the Irish Human Rights and Equality Commission Act 2014. Inclusion Ireland encourages the Department of Employment Affairs and Social Protection, the Department of Education and Skills, the Department of Health and the HSE to ensure that all decisions and supports provided to persons with disabilities are in line with this duty. That means being proactive to ensure human rights are realised and discrimination is eliminated. We would like to see that as a priority.

Not just those of us in the room, but everyone in society must ask why we are spending so much money in this particular way. The amount spent on special education is getting closer to €2 billion. Approximately €1.7 billion is spent on disability services and then there are various social welfare supports and so on. Substantial sums are being spent, but we continue to see segregated lives and segregated training. We need to ask whether we are happy that this level of funding is going into this type of segregation. Some of the examples Robert and I have given of very good services are no more expensive to provide than poor services, of which there are quite a few. They are just better. In many situations, they are, in fact, more cost effective. I thank the committee.