Ms Ciara N? Raghallaigh:

I worked as a speech and language therapist on the northside of Dublin for 28 years. I am a parent myself but do not have a young person with a disability in my family. However, as a health and social care professional accessing Parents Plus programmes over the years, I am more family centred as a speech and language therapist now since I have started delivering the early years programme, which I have run in the special school in our area so that families, as they are on their journey, can have a smoother journey, such as Niamh, who told me she would have had a smoother journey had she accessed a programme like this with me earlier on. Health and social care professionals on children's disability network teams, CDNTs, in primary care can train in these programmes which can be run with children who are typically developing, but I always deliver the courses with families who have children with an intellectual disability.

My ideal would be that families like Niamh and Wayne could access the early years programme on their journey, a few years after which they could come on the children's programme and, for teenagers, they could come on the adolescent programme. I now have an extra choice as a practitioner in that this programme launched in September 2020 so I can chose to deliver the special needs programme with families and they get the common experience, as Wayne explained, whereby there are 16 other parents in the room who get what they are at and understand the boat they are in. This programme was developed with parents like Wayne and Niamh who came to our focus groups. A total of 97 families asked us to include all the topics on this course. These were Irish parents choosing the topics they wanted to cover. They wanted a safe space to reflect on things, like Matt has said, such as their own self-care and how the other children were doing when there was a young person with additional needs in the family. The outcomes in the randomised controlled trial and the evidence-base with Trinity College Dublin showed that Niamh and Wayne, by coming on the programme, made gains in the goals they had set for their family. Their parental stress decreased by the end of the course.

One of the questions was how we have more reach so that programmes like this are available. We have trained hundreds of people and I have seen more than a thousand facilitators between Ireland, the UK and Singapore in this programme but the question is how we encourage those professionals or parent facilitators to have the opportunity to deliver them. I was speaking yesterday on the phone to a therapist on one of the children's disability teams. It is great that she is rolling out the programme at the moment but it is very challenging for her. She has a caseload as a speech and language therapist, so finding the time to be able to deliver this programme with 16 parents on top of her very busy caseload is a problem for the Government to solve. How do we scale up so that the professionals or parents who have trained as facilitators in the special needs programme get the opportunity to do it?

Happily, I have a good news story for 2022 and 2023. The charity Parents Plus is collaborating with Family Carers Ireland, which is a wonderful charity, and it is scaling up what it is doing to support parents of young people who have a disability. It is going to deliver nine of these Parents Plus special needs programmes this year, which is wonderful, and it is groundbreaking in the model it is choosing. It is going to have a parent facilitator like Niamh and a professional like me co-facilitating the course. Niamh and I delivered that online programme together with families in September with the collaboration of Family Carers Ireland. While the good news is that parents could be paid a fee and get paid like me to deliver this course, Niamh has to waive that fee. She cannot accept the fee because she receives carers allowance in Ireland and because her family's income is means tested. I have a huge resource in Niamh as a parent facilitator but I cannot ask her to deliver it again, on her own time and to volunteer her time again. She discovered in 2022 that it takes nearly a day a week for us to plan and deliver the course together. I would love to have Niamh delivering the course with me again. She is such a resource that it is even more attractive for parents to come on a course with me if they know Niamh gets where they are at. The means testing is an issue. I am ringing around the parent facilitators in Ireland at the moment asking them if they will deliver another course this year with Family Carers Ireland, and a number of them are saying they cannot. If the Department of Social Protection finds out they take a fee for the course, their carers allowance will be taken from them. Niamh is a huge resource as an expert working with us in our charity.

We have wonderful agencies and family resource centres around the country, and the Down Syndrome Centre charity is delivering this course for families, so many more people are finding out about this course, which is great. I had 40 parents on an information session on Tuesday night. They heard about it from Family Carers Ireland and from a Remember Us club Niamh is part of, but when I asked if they had ever heard of this course before, they said they had not. It is new enough and is only launched since September 2020. How do we get the word out there that for people like Niamh and Wayne, because the power of parents coming together to do an evidence-based programme is a huge support. As a professional, I will not come up with the ideas Niamh and Wayne come up with because I do not have the lived experience. We have a massive resource and opportunity here in Ireland for parent facilitators.

Parents are more likely to come on a course if Niamh is running it with me because they know it is not another professional telling them what to do. Niamh and Wayne understand where they are at.