Mr. Damien Walshe:

On the standardised assessment approach, I recognise the Senator’s long-standing commitment to the rights of disabled people to access PA. We launched a document last year called Pathways to a Personal Assistance Service. It includes a model we designed in order that disabled people can begin to explore their own needs and what supports might they require inside or outside the home. That would include social activities and employment. It is possible to design a system that gives disabled people an opportunity to assess what they need support with. It is putting the control back with the disabled person. I understand that there is not a limitless pool of resources, but it is possible to design a system that is standardised but that is not based on a lottery in the context of the CHO area. Such a system would ensure that disabled people are empowered and informed to begin to think about what they need, the additional supports they require in order to have the same options and choices inside and outside their own homes. On that basis, we would be able to map out a day-to-day picture and then extrapolate what kind of hours they would need weekly.

We can all accept that where we are is not what was envisaged 30 years ago because we do not have a standardised definition of what constitutes PA. There is a very clear one that has an international basis and that was adopted by the pioneers of independent living in Ireland. It has become diluted and depends on who provides the service. As Ms Gaynor stated, there are multiple ways by which disabled people can access services. As Dr. Carroll indicated, some people are very interested in having total control of their budget, but many disabled people just want a service and to get on with their lives. They are not interested in recruitment or retention. Ultimately, however, what they are able to access is limited by what service providers provide. They are often informed that their personal assistants cannot do this or that, which is contrary to the fundamentals of PA. We are told that people cannot bring their personal assistant to work or to the pub. We are told that personal assistants do not have medical qualifications and cannot administer medicine when people request it. It becomes a farce, because the system is about doing things that a disabled person wants to do in order to have control of their lives.

On the budget, I take on board that there is no assessment of what the unmet need is or what it would cost but the disability capacity review that was carried out by the Department of Health in 2021 stated that day services cost about €25,000 per annum per person. Very few disabled people are asked if that is what they want. This is a significant investment in a system that often runs contrary to the principles of the UNCRPD. This committee is tasked with oversight of how the UNCRPD is being implemented in this country, and it was fundamentally about disabled people being included in all aspects of society. There needs to be a genuine question around how we develop and create a system that is compliant with the UNCRPD, that is led by disabled people and that gives them a choice and control over their lives.

I welcome that the HSE is setting up a working group this year. I am really looking forward to the involvement of ILMI as a disabled persons organisation under Article 4.3 and in the context of general comment 7. It is crucial that disabled persons organisations with an authentic voice based on the experience of disabled people inform that system.

The campaign we have been running for the past few years is to define what constitutes a personal assistant, standardise the assessment of need, promote the need for PA, invest in the service and legislate for it. That was led by disabled people saying that if they were to build a system, this is what they would do. It is worth noting the year-on-year increase in the budget for PA, which is very welcome, but it should also be recognised that was based on disabled people at the grassroots level agitating and campaigning for what they want. In the absence of disabled people doing that, we will see a continual investment in services that disabled people do not want. If we are talking about the UNCRPD and are genuine about inclusion and disabled people having the right to participate in society as equals, we need to build a system for the 21st century that allows them to do that. They should not be told, for example, that if they move from CHO 3 to CHO 5, their service will cease because they do not have that right in the CHO 5 area. When they leave college, having had a taste of freedom and control, they should not be expected to go and live at home until they reach the age of 65 and are no longer considered a disabled person but can move into older people services. Without the opportunity for people to access that service, they are being denied the things non-disabled people take for granted, which is just basic life.

We welcome the commitment from the HSE, but we need to see how that will be done. It should not be something whereby the HSE can say that it will come back to it next year. We need this to be time-bound. We need leadership at the top, so this is actually and practically implemented. When the section 38 and 39 organisations receive that funding, there should be no lack of clarity. They should know the type of service they need to provide and how to promote it. Disabled people should be in control of it whether they decide, as Ms Gaynor says, to have a lie-in and have that flexibility, or decide to go to the cinema, a GAA match or whatever. That is what we do in Ireland and what we take for granted, but the majority of disabled people are denied it.

Within that standardised assessment of need, not every disabled person is going to need the same level of support. That is completely fine. Some people may need support in the workplace and others may need support to access social services. Some people may have higher needs and need a higher level of support. It is about embedding the idea that disabled people, through that assessment of need, are empowered to say what they need in terms of help, inside or outside the home, but it is their choice what they do.