Mary Seery Kearney (Fine Gael) | Oireachtas source

I thank the Minister of State for her statement today and her continued work and commitment. She is extraordinarily dedicated and shows a determination and will since taking up office that is to be lauded and praised, and I sincerely mean that. Her office is super: if I contact her officials, I get an immediate response. There is a sense that work is getting done and that they are listening, which is really impressive. I thank her for that.

The Progressing Disability Services for Children and Young People programme is great in the services it will provide. The way it will do so in an equitable and consistent manner is fantastic. However, in the here and now, there is nothing but inequality and inconsistency. I see incredible political will. I saw it previously with my party colleagues when they were leading the Government. I see it in our shared three-party Government. We have committed eye-watering budgets to this, yet there continues to be a problem.

As I have raised with the Minister of State before, one of the first representations I had was that of a mother with a newborn child with Down's syndrome. She was in a scenario in which with each application she made, she had to prove that her child needed them. I do not understand why we have not put a pack together that outlines what is in store for parents. It should be cross-departmental in its provision of information. It should ensure the supports available to them and the realities are reflected in it, and that it is made easy for them. Children might be assessed but will they receive the services identified through that assessment? If they live in Dublin 12, they certainly will not. At present, in that entire Dublin postcode area, no child is receiving that service. I have raised this matter with the Minister of State before. There is a postcode lottery as to who, when and what services they receive.

I get emails from parents who cannot understand why early intervention windows are missed or that someone has the gall to send them a letter that states they are on a waiting list for an occupational therapist, whose services they will receive in 2024 when their child needs it now. Families have received letters for appointments that were due to take place this month, that have now been postponed for a whole year. Families are resorting to accessing services privately. The problem with that is that it is a question of whether a person can afford them or not. In the lottery of life, depending on what family one is born into and whether it can afford it or not, a person will be set on the right course and be given the right opportunities to live his or her best life or not. That is not okay. There are situations in which the provision of resources allocated to twins is as though they are one person instead of two people. These are individual citizens deserving of the rights of our State. Parents who were assessed in January this year and require further assessments have been informed that they have been moved on to the progressive disability programme and they will have a 36-month long waiting list.

I acknowledge that the Minister of State is not an apologist for the HSE. I am venting many of the issues I have already put to her in emails and have spoken about with members of her office. Parents are tired of advocating for their children and are worn out having to repeatedly fight. If my child were involved, I would be chained to the gates of Leinster House. It is appalling that people are sent to that level of distress when they are already worried about the forward planning for their child. They hear of situations such as that in Donegal and wonder what will happen when they are no longer here. Senator McGreehan referred to the disability matters committee. I come into this House every Thursday each week and share what I have heard in that committee and the lived experience of people. The testimony is that of paternalistic provisions, infantilising in our approach, the othering of people and ableist in our presumptions. People do not come before the committee as storytellers. They are there to say that they are here and they have rights, that they want to influence policy and decisions, and that they should be at the centre of decision making.

Last week, one of the witnesses who came before the committee was an autistic woman with autistic children. She spoke about cognitive behavioural therapy the objective of which is to mask the autism. She used the term "eugenics". I never thought I would hear that spoken about in this Oireachtas, something about which we should never hear in this State, since its foundation. There is a feeling of the othering of people or not being a citizen or being entitled, and being someone who we benevolently care for which, when in fact we should centre our whole State and all our decisions around how we ensure everyone has a right of access, that homes are designed so that people can not only visit but can also stay over. We know of people who have been unable to do that. The Minister responsible for disability should not be a Minister of State but a full Cabinet Minister, such is the value of the statement we need to make. We must give the Minister of State the autonomy to make all the decisions and command the power and budget that she deserves to bring home the determination and will that she has set out. That is the direction in which we need to go.

We must deal with sections 38 and 39. There is a bleeding of staff from one service to the other. If we rely on section 38 providers, we must ensure staff are retained. I thank the Chair for indulging me.