Ms Carly Bailey:

That is no problem. Deputy Canney asked about the assessment of needs, the need to fight and whatever else.

It is a very difficult process. The reason it has been changed is because under the Disability Act, the assessment of needs is supposed to be done within a six-month period. The difficulty around that is instead of arriving at a diagnosis or understanding better what is going on with the child, the legislation is clear in that what has to be done - and all that has to be done - is understand what the child's needs are. Many children are getting an assessment of needs done, potentially even within the time limit, although there are still massive delays in many cases, which does not outline whether the child is autistic, has attention deficit hyperactivity disorder, ADHD, or whatever it might be, but simply states the child has needs and will be referred to either a multidisciplinary team or for speech and language or occupational therapy. It does not give a clear picture of what is going on. The system tries do that as quickly as possible and then one is moved onto a waiting list. Essentially, the idea of being able to come to a diagnosis has been got rid of. The legislation, as laid out, is being met. One gets moved onto a waiting list and then, for the most part, nothing happens. One is just sitting there waiting and ageing out on early intervention and moving to the school age team.

I want to talk about a couple of parts to that issue. As I said, diagnosis is really important but so too are the services. There is no point in having a diagnosis and then not receiving the services one's child needs, as outlined in the service statement. What has happened and what we are finding, setting aside Covid-19, is staff were being redeployed from services to the assessment of needs, in order to try to get that through more quickly and then there are even fewer therapists left at the end of it, to help the child out when he or she has come through that process. The committee could look at that to see what has happened.

Obviously, at the very beginning of Covid-19, we really did not know what was happening. The priority was testing and, wherever possible, contact tracing. A number of staff across the public sector were redeployed and while I will not say after things calmed down but once we got a better handle on them, instead of advertising for contact tracing staff, disability services and dental staff continued to be used. The two areas that already were significantly underfunded and under-resourced before Covid ever struck were further disadvantaged because they were being used to continue to help fight the good fight against Covid, instead of people being hired to do those jobs. I do not know if everybody is back from redeployment but we already had massive a waiting list and 18 months later, that waiting list has become such that I just do not know when my child or thousands of others will be seen.

We were told that, especially around Dublin, there would be a reconfiguration of disability services. I have heard that for the past three years and nothing is happened and that was before Covid ever happened. I would love the committee to understand what has happened across Dublin and, potentially, other parts of the country. I am not sure about that. What has happened around the reconfiguration of service providers? Where has that gone wrong? Why has that stalled? What has happened? We do not get any information. Please do not focus only on assessment of needs. It often gets the most attention but there is simply no point in having a diagnosis if one's child still is not able to access the therapies and supports he or she needs to help the child understand his or her world better and come through challenges he or she might face.

I am not naive enough to think payments being more individualised is even possibly something that could be on the table. However, there has to be some kind of movement around figuring out extra payments, at least to cover the extra cost of disability. That could include things such as the heating having to be on longer, electricity for oxygen tanks or whatever else. There are loads of different examples and the stakeholder group would probably be well able to provide those.

The extra costs are real, even those such as travelling to hospital appointments. My Dad is also disabled and is a wheelchair user. He has spinal and heart issues and has been going to different hospital appointments. We looked at the past few months during which he had nine appointments, seven of which were in Dublin, because he has to use specialised services. I would be the first to say that I want my Dad, or anyone I love, to go to somewhere that has the necessary experience to be able to treat those conditions but he is not getting anything towards the cost of his diesel to get up. He needs my Mum to come with him because he needs someone to push around a wheelchair if I am not available. We worked out that each trip, including tolls and the rest of it, costs at least €50 and that does not include things such as a cup of tea or lunch. He had a number of those appointments and many people have to visit their medical provider quite frequently, especially when there is a disability or an ongoing illness.

There are many different ways of looking at what those extra costs are and how we can meet them for people and not just after the fact. My Dad is in receipt of an invalidity pension. Very little is coming in to him and yet probably half of his invalidity pension was spent on diesel over the past couple of months. It really needs to be looked at how we expect anyone on a disability to manage all of that on just over €200 per week. It is just not feasible. Yes, things should be more individualised. Is that administratively possible? Probably not but there could be ways and means of looking at that.

On the uphill battle, I fully support anything such as a quota system. The only thing I will say is very often, when we talk about quota systems, especially when we have one that is trying to have more gender balance, the first instinct is to go into the 30% or 40% quota for women. We still have 60% or 70% on the other side. If we are doing quotas and whatever that may look like, it has to be expense of the other side and not at women's expense. That is a really important point to make, but I fully support it and I think parties can and should be doing much better. I make no bones about how being open about having a disability is a big deal. I am sure Councillor Cronnelly would agree with me on that. I am in a slightly better position, because, mine is the hidden one. Unless I tell, one will not necessarily know about it. I very much appreciate the privilege of that. Something could be done about that.

It is also all well and good to have political parties decide to do more about it, and they should, but let us understand the barriers to running for election, which I will leave for Councillor Cronnelly to talk that afterwards, and those once one gets there. Let us say one is successful in becoming elected as a councillor, as I have been, or in getting to the Seanad or the Dáil, are those settings accessible? Are they set up in such a way that it is possible for one to participate, rather than being there as a token? I find it very difficult in the local authority. Work is under way, although there has been no consultation with me as to what my needs might be, but I could not hear anything in the chamber. The ceiling is very high and the microphone system is very old. I have struggled with that time and time again. Covid has come along, we have moved online and suddenly, I have no problem. I can hear everything, participate, get there and attend all the meetings.

I appreciate there is a sense of not wanting to move towards that type of thing and of wanting to get back to the chamber. I know it is on the programme for Government, but a hybrid system will be a huge game changer for so many people. One wants to be there and attend but there definitely will be times, especially for disabled people, when one simply cannot do so but one could attend online. It is as simple as that. I strongly urge the committee to look at that because that would be a game changer for disabled people, parents and all sorts of different people who, in terms of their jobs and so on, might not have the same flexibility to take on becoming a local councillor as others might.

People who are self-employed can fit that around their job and set their own hours. For people like me who are in regular work and do not have the same flexibility, being able to attend meetings online would make a massive difference. They are some of my thoughts on this issue and I am happy to contribute further on that.