Dr. Joanne McCarthy:

I thank the committee for giving us all an opportunity to highlight the important role of PA services in supporting independent choices for people with disabilities. The Disability Federation of Ireland, DFI, is a national representative umbrella organisation with over 120 member organisations. It works to make Ireland a fairer place for people with disabilities. It is tough to follow the three preceding speakers because what I am going to talk about is really dry. I will build on some of the ideas introduced by our colleagues from the Department and the HSE. We are talking about the policy side, but the most important point we need to make relates to the power of the lived experience. I stress that for many people with disabilities, PA services are critical if they are to be able to live independent lives of their own choosing in their own communities.

We have to appreciate that the term "personal assistant" is ill-defined and sometimes poorly understood by those inside and outside the disability sector. It is exhausting for users and advocates of the service to have to continually redefine and explain what constitutes a PA service. Recent DFI research has illuminated the fact that the general public cannot understand why an average person with a disability would need a PA service. People tend to conflate the concept of a PA service with the role of a CEO. They are very confused. We have to take that slippage on board and try to expose it.

We contend that there is a poor understanding of the definition and delivery of PA services within the disability sector. The kind of slippage to which I have referred is also found within the sector. The understanding of PA can deliver from HSE or CHO area to HSE or CHO area. Obviously, some people understand clearly that by providing a PA to a person, or by supporting the provision of a PA to him or her, such a person can be enabled to participate in his or her local community, attend university, attend social events and be employed, etc. My colleagues have illuminated the benefits of PA services. We must acknowledge that the significant slippage which happens with PA services often takes place between the role of PAs, home supports and so on. We need to pay some consideration to the slippage between service types because it makes it difficult for us to qualify the true needs or requirements of a person from his or her PA service or home support service. When a person gets a limited home support service but it gets tagged as a PA service, the conflation of the two can confuse the outcomes and the outputs that are achieved through this process. This can often mean that people get a service which is not appropriate to their needs. A person who requires a PA may be provided with an inhouse PA who is basically a home support, and then that gets conflated. We need to understand the impact this kind of slippage has on the real lives of people with disabilities who depend on PA services.

The DFI would strongly argue that a well-resourced, person-centred responsive PA service must be understood as the cornerstone of any community services programme that supports people with disabilities. It is important for us to remember that most people with disabilities do not live in congregated settings and do not depend on day services. They are people like my colleagues who are present - they are in their own homes or in supported accommodation in the community and are doing their best to participate as equals in their communities. The role of PA services is critical in that regard. They need PA services to enable and empower them to continue to live as others do.

We suggest that when the committee is beginning to consider how the concept of PA services should be defined, it should take the time to consider Article 19 of the UN Convention on the Rights of Persons with Disabilities, which defines the true value of what a PA service is. I suggest that the committee should use this as its guiding principle when it is considering what constitutes good PA services. While I do not want to labour the point, I must say that this is not an alien concept to us. It is well articulated in domestic policy. The role of PAs is covered in the national disability strategy implementation plan, the Transforming Lives programme and the value for money report. We have all bought into and accepted the key role played by PA services, but I think we need to look at the delivery of the service.