Oireachtas Joint and Select Committees

Thursday, 21 October 2021

Joint Oireachtas Committee on Disability Matters

Aligning Disability Services with the UN Convention on the Rights of Persons with Disabilities: Discussion

Ms Samantha Kenny:

Yes. One of the things that I find very hard is the number of hoops we have to jump through. We have to prove that the level of need is there and then we have to write all of that down. We have to fill out a massive amount of forms. I am speaking not of one or two pages but 18, 20 and 30 pages. You spend your entire life advocating for your child and then you have to strip that child down to his or her medical diagnosis, which is soul destroying. When you send the forms off, you are literally at the whim of somebody else deciding whether (a) what you said is true, (b) whether he or she is of the same opinion as you because they do not have as much interaction with your child and (c) even if you are grant aided you then have to go through the rigamarole of paying upfront and waiting for an inspector to come to the house to confirm that the work, in his or her opinion, is done and then you get the grant. That is what happens if the application is financial. If it is for equipment and other stuff, there is a constant proof of need. Therapists have their own opinions on what a child may need because they are not around the child 24-7. On top of that, they have to look at their funding. Sometimes funding wins out over need.

There is network of families behind the scenes, that I am sure politicians do not see, who are literally handing disability equipment to each other that they have had to fundraise for. It is soul destroying watching the family of a child who has passed on dismantle a room and hand over equipment to another family. I do not think people realise that happens, but it does. That is literally solely because other families cannot get funding or equipment. They also may not have access to a therapist at the time. During the pandemic, we lost our therapists. The most profoundly disabled child in my household had no therapist during the pandemic. We were reliant on a pool of therapists, if they could get to us. Our therapists were redeployed. The decision was taken that they were needed elsewhere and, again, we took the hit. I understand that was important in light of the pandemic, but my child's disability did not disappear just because a virus hit. My child grew and she needed access to therapists for equipment and for adjustments and they simply were not there. That happens time and again. We seem to always take the first hit. When there are budget cuts, we take the first hit and we are forgotten about most of the time when there is money available.

As for disability awareness, the medical model does not work. If you read the diagnosis of my child and then looked at my child, they are two completely separate things. My child does not fit into boxes. No matter how much you try to fit her into a box and check that down, it does not work like that. There is an element of nurture in every household and every disabled person is represented differently based on the environment he or she is in as well. There needs to be a look at each family. We need to look at the needs of the family, not just the person because the person is not separate to the family. The person is integrated into a unit. That is completely forgotten as well. They are important elements that people need to take home and look at. As I said in my submission and my opening statement, there is an element of "they can make do with what they've got". An average person would not be expected to "make do" yet my child is expected to do "make do". I find that disgusting, to be honest. I do not think it is fair that she has to "make do" because she has a disability. I hope that answers some of the questions.