Ms Samantha Kenny:

I will start with the assessment of need. For starters, getting rid of the backlog of the assessment of need impacted those already in disability services. I do not think people realise that. Because they could not find therapists, we lost therapists to redeployment in order for them to tackle that backlog. I understand an allowance was given to disability services to backfill but they could not find therapists. There were no therapists available to backfill so, again, we lost therapists for that backlog to be tackled. I do not think people are aware of that and that needs to be raised.

As for accessing interventions, all they have done is tackle one waiting list that had legislation protecting the people on the waiting list and put them on a waiting list with no legislation. That is what they have done. That is my view of it. Now those children are going to be left waiting for services because even though we have had an announcement of all these extra therapists, we now have to find people to fill up those places with therapists.

My daughter is apparently currently supposed to have a physiotherapist, an occupational therapist, OT, a speech and language therapist and a social worker. We only regained an occupational therapist after joining the School Age Team back in July. We are using an out-of-area physiotherapist because we do not have a physiotherapist and we have no speech and language therapist. I have a social worker who is not easily contactable and that is for the child with profound needs. The children with autism are under physiotherapy care but their physiotherapy involves them having inner sole appointments and that is it. They are as and when needed, which normally results in an annual appointment. That is it. I end up taking them to private physiotherapy that we have to budget for because otherwise they do not get the care that they need. The model is literally like putting sticking plasters on gaping wounds. The physiotherapists have so many kids, so many hours and so many needs to take care of that they cannot adequately take care of all the needs they have, which means either that children are left waiting or the children accessing services are not given the adequate services they need.

On the interventions, my youngest daughter would do great if she had similar stuff that they have in the US but we cannot access that because we just do not have the funding or the therapists. The model seems broken. It would be great if she had access to regular physiotherapist and OT visits but instead we get equipment adjustments. My daughter has leg splints, therefore, it is leg splints, measurements and adjustments. That is what our visits are for. That is all we get because that is all that can be provided.

I will move on to the issue of housing adaptation, which is a rigamarole in itself. First, you must fill in the application form. Then the council OT comes through and decides what you need in your home. You do not decide what you need; the council OT decides what you need. Then you must attempt to find builders to try to get quotes for everything and quotes for equipment. Then, even when you send that off, in our case, our quote was for €30,000 for the amount of work that needs to be done. The council came back and gave us a grant quote of €15,000. We now have to find the extra €15,000 but in reality, we have to find €30,000 because we have to pay the builder upfront. The work has to be done. Then the council sends an inspector out to make sure the work is done as per the report and gives us the grant back retrospectively. For us to start work on an adaptation, therefore, I have to find €30,000, even though I am eligible for receipt of a grant for €15,000. That is a huge amount of money. I am not alone in this. There are people out there who need larger adaptations than we need. We are very fortunate that we have the capability to ask for help from other people because not many people have that. To date, we had a grant initially given to us back in 2018. It is three years on and I still do not have the adaptation done because I simply do not have the finances in place to do it.

The Senator asked what three things I would change. Adequate interventions would be great, as in if kids needed physiotherapy to have regular exercises, stretching out sessions and massaging or regular OT appointments in order that they could be continually assessed so that as their needs change, their plans of care could change. That would be great.

Some sort of financial support is needed. I know people say we have carer's allowance. Carer's allowance is a means test. Not everybody gets it. In fact, there are hundreds of thousands of carers out there who do not get carer's allowance. Then on top of that, not only are they incumbent to their husband or partner to be the sole financial earner and their value is placed on that financial earner, they may also have difficulties accessing loans. In our case, we have severe difficulties accessing loans because they looked at our financial circumstances, said we had three lifelong dependents and stated that we would not be able to pay back a loan because we have three lifelong dependents.

We were unable to access loans. We need some type of financial support. I am not saying we want money given to us, we would like options whereby we can look at loans that take account of our circumstances and that do not just exclude us because we have children with disabilities.

The final thing that would help is respite care. The only respite care I get is ten hours nursing care from the Jack and Jill Children's Foundation for my daughter and eight hours of home support help for one of my autistic children. They need a break away from me as much as I need some time to myself. During the pandemic, my daughter has spent the past 18 months staring at four walls and my face aside from going to school. Imagine if any other person had to do that. What kind of life is that for anybody? If she went away to respite care, she would be able to have her own holiday with her friends and support workers who would be able to take care of her in the way that she wanted it done, without having to do exactly what mammy tells her she has to do all the time. Respite care services are predominantly provided by charities. In many cases, especially in our area, they are not even open for applications because they are so under-resourced and demand is so high. Respite care is something we really need to examine. In the case of my family, I have not had a night away from my children since 2014, when I was married, and the last holiday I had was in 2002. This is 2021.