Ms Rita Walsh:

To describe the gap we see between education and health, I might outline my lived experience. My daughter left school in 2009, having studied modules in the leaving certificate applied, and the question was what she would do next. When we did some research, the only options involved the local service provider, and the funding for that was routed through the HSE. Because there were no other options, we engaged with that, but it quickly became obvious to us that it did not suit her. Not only did it not meet her needs but it was detrimental to her mental health. We had to do something about that, so we started to create a programme for her by ourselves outside of that. We had to find the funding we needed to do that because there was no other option.

In 2013, I started to hear about personalised budgets. I attended a seminar on the subject in Killarney and began to feel passionately that they might be the way to go. With a lot of negotiation, work and lobbying as a family, we got a personalised budget in 2014, as part of a pilot scheme. To say it was transformative to my daughter's life would be an understatement. She now had a level of autonomy over her life, supported by us. We should, and do, have a natural authority in her life because we are the people who have been there since the day she was born and we know her best. We were able to create a life for her that she wanted. It was diverse and had all the elements that all of us consider to constitute a good life. It had elements of education and work and there was somebody to support her in a very bespoke way. It was not a case of one size fits all but rather a size that fitted her and her alone, and that has continued to this day. It has greatly enhanced the quality of life for not just her but for us too because we know where it is and we are part of the plan.

I met fantastic people within service provision but it just was not for her. She was part of the national task force on personalised budgets, launched by the then Minister of State with responsibility for disability issues, Finian McGrath, in 2016, and that offered great hope that this would become more widely available to people with Down’s syndrome. This year, we held a meeting in our branch with parents of students who are finishing forming school. It is difficult to see how the opportunities for them are any different from what they used to be. In Kildare, we had a really good relationship with the HSE and service providers and we are grateful for that. They supported many of the members who were going to certain service providers to access our programmes. Our literacy and horticulture programmes are bespoke in that they take great recognition of the learning strengths and challenges of people with Down’s syndrome and their learning profile. Even to teach a lesson in our horticulture programme, the providers will be aware there are three levels, whereby some people are visual learners, so visual aids will be used with them, while others can read and write quite well. We have to be constantly aware that some people use pictures for everything they communicate, whereas others can write quite well.

The Senator asked about the gap between education and health. For me, it is about creating a good life, irrespective of which funding budget it comes from or whatever. It should be a life that meets what most of us consider to be a good life. We need much more flexibility in respect of how funding is allocated for people with disabilities. Even the HSE has indicated that it needs to be more creative and think outside the box. We tend to change the needs of the people rather than the structures that underpin the funding. As our people age, with the significant threat of early-onset dementia, education and health become intrinsically linked given that, if a person is to hold on to the literacy he or she has learned, he or she must also hold on to a word bank and language skills. The question, therefore, is whether the two issues can really be separated in that way. It is not about deciding whether it is a matter of health or education but instead what is the best approach for these people, rather than from where the budget comes.

To follow on from a point the Senator made, we at Down Syndrome Ireland are very proud of our work with the education and training boards, ETBs, and the Department of Further and Higher Education, Research, Innovation and Science. It will be very significant for our people that programmes within the ETBs will meet their needs as they leave school. Currently, there are very few options when they leave school to continue into further education, and that will be brilliant. Beyond that time, when our people are not school-leavers but are entering their late 20s and early 30s, when they will still require that literacy challenge and mental challenge to militate against early-onset dementia, with all those sorts of engagement, it does not really matter whether it is an issue of health or education but rather that the support is there.

It is about living ordinary lives in ordinary places with ordinary people for all of us. It is not spectacular; it is not the cure for Down's syndrome. It is about meeting that need and, as one of the speakers said, providing a wraparound bespoke solution keeping it all together.

The Senator also spoke about the research on Alzheimer's disease and dementia. As a parent of somebody with Down's syndrome, the first time I heard about the research I was floored. I wanted to go home and hide under the duvet since I felt all the work we had put in was for nothing because the actual scientific research said this was coming down the track. The hope from that seminar with Professor Mary McCarron was that we can mitigate it and give the best quality of life to our people. We can push the can down the road and mitigate the symptoms and stresses of early onset dementia by how we allow our people to live their lives. That is why we need be inventive and need to change. That is why it needs to be bespoke. I implore the Government to look at personalised budgets and individualised funding and make it a realistic option for our people. It is for Government to decide how that will be done, but it needs to be there and it needs to be bespoke. I hope I have answered all the Senator's questions.