Ms Ann Marie Flanagan:

I thank the Deputy. I will try to remember all of those questions. The first thing to remember is that, in Ireland, we do not have a funded and recognised statutory engagement process with disabled people. Again, we need to acknowledge the political and cultural norms that exist and the fact the State goes to very organised service providers. That is a particular lens and it is there, whether disabled people agree with it. However, at a minimum, there has to be equal investment in giving voice to disabled people.

I want to take the opportunity to explain the power of DPOs. At local level, we have the collective of disabled people across impairments, lived experience and understanding of self-worth. As a consequence of coming together and the peer support that is fundamental, I have watched the empowerment and the voice of individuals. Until now, the majority of people have been living at home with families, they access day services and they are long-term unemployed. They would not have seen themselves as equals and, because they were not deeply unhappy, they believed this would be their best lot and they regularly used reductionist language in describing themselves. What I want to express, and this is important, is that disabled people, because they do not have supports, are dependent on the love and goodwill of brothers, sisters and elderly parents in the main. They are uncomfortable with challenging that because of the level of gratitude and love they have. However, so many people have shared with me that they feel guilt, they do not ask for what they want and they fit in with what the family does. Many people would say that at the age of 25, 30 or 35, they feel like their little nieces and nephews and, as somebody said to me recently, they fit in with what the children do in the family. That has nothing to do with their impairment. It is to do with how they are treated and viewed within the family dynamic, because the family dynamic is that they are members of the general population, and the general population still seems to see disabled people in a paternalistic way.

I am in my mid-40s, I have a career, I am a mental health professional, I have PAS and I have a child, yet I experience ableism every day of the week. For example, I could be at a meeting with other mental health professionals who do not have disabilities. I might have made a contribution on a recovery solution for people we work with and it would be unheard. I know myself that, as a consequence of ableism, it is heard differently by somebody else. I am the lived experience. I feel it every day. Another example is around the need to have protection and the right to PAS.

HSE organisations are running out of money because there is no national legislation that protects the hours and gives a standard of support for disabled people. Regularly, CHOs make cost-cutting decisions, regardless of risk assessment or impact on disabled people. The other thing in engaging with HSE organisations regularly, they say they are crisis managing. It is never about the quality of life. We now know the personal assistant services has become a form of institutionalising people. It is called personal assistance because it comes under a budget, but it is home help. The average time that people get per day is one hour and, therefore, people are not planned for.

A HSE representative mentioned an assessment at a recent committee meeting, although I cannot remember its exact name, that is being used for people in nursing homes and other congregated settings. However, it is a deficit model. It looks at disability and what people cannot do. There are no recognised assessments that engage with disabled people and ask them what they want for their lives and offer them all the supports they need. The State maintains that it should meet the minimum needs of individuals.

I also wanted to give another example of how funding is spent and the cultural norms around that. For example, when we look at the employment policy for disabled people, again, much of the funding is about compensating employers. We are almost selling the idea that employers are doing this disabled person a favour by employing them; that it is almost charity and a social service, rather than employing people. Rather than providing supports for the individual to do the job equal to others, we are compensating employers through grants. We are convincing people that they should do the right thing. Of course, everybody has social responsibilities, but when there is an imbalance between the right of the potential employee and the compensation of prospective employers, this feeds into the idea of inequality and that disabled people are less equal. There is a need to legislate for personal assistants for everybody. I have said that previously.

The Deputy asked about the mood. I recall in November 2019, the excitement when a unanimous motion passed. It was 7.30 p.m. There were many people either in the Gallery or watching from home. Deputies spoke passionately about disabled people and activists whom they knew at local level and they were supportive of the establishment of a commissioner to look at what is required. Yet, it is not even in the programme for Government. It is exhausting for disabled people. The committee has heard the evidence from everybody time and time again. We are the poorest and we have the fewest services, yet we do our best to be as vocal as we can to ask for our rights to be protected.

Ireland was the last country to ratify the UNCRPD. I ask on behalf of disabled people to please not implement this in a minimalistic way, but to embrace all the articles in the convention, see us as equal to yourselves as citizens and constituents and support the realisation of our rights. That can only be done by interrogating the existing way that services are provided and by looking at the individual and seeing their potential, rather than seeing their minimum needs within a traditional medical model approach to providing disability services. I hope that answers the Deputy's questions.