Ms Nicola Hart:

To pick up on the comment about people being referred to Ms Whitmarsh, I took a phone call a few months ago from the constituency office of a Government Minister asking Down Syndrome Ireland how to get speech and language therapy for a child with Down’s syndrome. We do have some therapy services in some of our branches but those are funded by parent contributions and people shaking buckets. That is who people are being referred to. That should not have to be the case. The call was not from the Minister themselves and I have to make that clear; it was from the constituency office. However, when someone is phoning a charity that has to fundraise to provide the basic services those children should have, that is appalling.

The transition to adulthood is a huge issue. Members heard me talk earlier about the difference in life expectancy for people with Down’s syndrome in particular. There is usually some funding year-on-year for school leavers to access HSE day services but if someone does not take up that funding as a school leaver, it is very hard to find a pathway in at a later stage. If someone had a decent service and is doing well and has gone through mainstream school or is in a position where, rather than looking at a day service, they are looking at further education or maybe employment, families are not doing that because of fear. If someone does that when they are 18, then when they are 30 and their parents are another 12 years older, and the person is another 12 years older and their needs might have changed, there is no way back in to those services and there is no pathway except the school leaver pathway. That is a disincentive to people to go and be included in society. It is a structural issue that needs addressing.

We are seeing heart-breaking cases. I have had phone calls from parents in their 80s who are looking after children with Down’s syndrome in their 50s who have early onset dementia and they are being told there is no residential place until somebody else dies.

I would not want to be in that situation in my 80s. I do not believe any one of us would.