Dr. Joanne McCarthy:

I will respond to a few questions. I was the person who sat on NPHET representing disability. We were hugely disappointed when NPHET's vulnerable subgroup was stood down, because there are so many issues that are so specific to disability and the nuancing that is required. I will give an example. By just vaccinating those in residential and day-care facilities and not extending the programme to include those who receive other disability services such as key home supports, many of those have very complex disabilities and it makes them very susceptible to Covid. It is difficult not having a space to escalate this or to be able to find a space to have it discussed appropriately. I think we are still suffering the ill effects of that. We did and would appreciate that ongoing push because we are not through it yet. We are all talking in a positive way as we are rolling out the vaccine, but we are not out the other side yet. I think it was my colleague, Ms Dempsey, who said we do not know what Covid will look like this time next year, so it is really important that we plan to make sure that we have the best wraparound response to all people with disabilities.

DFI would really welcome the opportunity to come back and to talk about the pilot project in operation in Wicklow and to demonstrate the impact that has had in terms of decision-making and hearing the voice of and the experience of people with disabilities and their families in how they plan their services.

I do not want to take up too much time but if I can, I will make some other quick points on which I did not get a chance to respond. Somebody talked about bringing in each Department once every quarter and that Departments would be answerable to the committee. That is really interesting. We did that under the national disability inclusion strategy so I think there is learning there. If the committee is doing that, the most important thing is to look at what it is asking them to measure against. Everybody in the disability sector is very busy, but are we busy tracking the impact that this busyness is having on the lives of people with disabilities. If the committee is bringing people together and asking them to come in, the types of information they are asked to talk about or give evidence against is really important. We must examine what is being achieved through all this busyness, and how that is impacting on people with disabilities

We must be commended as a country. We have been on a long journey for disability since the commencement of the Disability Act. We have a lot of history and a lot of knowledge around that. One of the key things on which we are consistently challenged is interdepartmental work. Things fall down when two Departments are asked to work together. Someone talked about housing. That has been one of the biggest challenges. Most people with disabilities are not in disability services, they acquire them at working age. If their housing needs adapting and the housing adaptation grant is not sufficient, all of a sudden they are on the social housing list. Their needs can change or escalate, for example, in the case of a neurological condition. They need a home support package in order to sustain their ability to live independently. They need access to a limited number of personal assistant, PA, hours. Less than 0.3% of the disability budget goes into PA hours.

Someone else asked what is needed going forward. We do not need more of the same. We are asking members to think about how we invest in day services and decongregation. That is just sorting out where we are currently. We do not need more of that. People want to live ordinary lives in ordinary places so do that one needs one's own home and front door, and access and to be secure in the knowledge that one will get personal assistant and home support hours, which will follow one into one's employment so that one can have a job.

Earlier, people talked about poverty. Almost 15 years later, Indecon is doing another round of research on the extra cost. As we know there is an extra cost associated with having a disability, we do not have to wait for the report to tell us that. We also know that the 120,000 people in receipt of the disability allowance are bearing the brunt of poverty or risk of poverty. We urge the committee to start with them and it does not need Indecon to provide more information.

We have learning, so if the committee brings in representatives of Departments then I urge it to pay particular attention to the measures and find what works, as well as what interim measures does it want reported on. It must assess how Departments work together and should make that a valued measure in its own right. When two Departments need to work on something to deliver a service, the committee must find ways to track that. The committee must remember that it is not about doing the same. It is about how we track things such as the investment in new models, personalised budgets, personal assistance hours and the number of people who own their own homes or live in social housing. They are the most important things to think about.