Tom Clonan (Independent) | Oireachtas source

I thank the Minister of State for coming along this afternoon for this Bill. I welcome my guests from all over Ireland - proud disabled citizens, parents and carers, all of us advocates for the fundamental human rights of disabled citizens.

On section 1 of the Bill, before I start, I wish to say this is a deceptively short Bill. It may appear to be a small step but it is not. This little Bill is a huge leap forward for the fundamental human rights of disabled citizens in this Irish Republic. The sections as set out, in particular section 1, bring us into line with the rest of the European Union and many other parts of the world, in that they gives statutory rights to disabled citizens for all of the services, supports, therapies and surgeries set out in an assessment of needs. We know of the waiting lists for surgery at Children's Health Ireland where children and young adults are suffering life-altering and life-limiting changes for lack of a surgical intervention in relation to scoliosis and complex spinal surgeries, and of the urology waiting list where their development as human beings has been completely compromised. I know the Minister of State is more aware than possibly anybody in this room of the terrible waiting lists for all conceivable forms of intervention and supports for disabled citizens, whether physiotherapy, occupational therapy or psychological assessments. Section 1(1)(a)(2A) states: "The Executive shall ensure that there are provided in the service statement such of the services identified in the assessment [of need] report" which is a statutory right under the Disability Act 2005. The Bill amends the Disability Act by creating a statutory right to all of the supports and services that are contained within an assessment of need. Critically, those services and supports will be provided in a timely fashion within the therapeutic window. As a society, and a republic, we must catch up with the rest of Europe.

I spoke to one of Ireland's leading surgeons in urology and another in paediatric surgery regarding complex spinal procedures. I asked what the reactions of surgeons would be in children's hospitals in Boston or Montréal, which are centres of excellence, if we got all of the children who are on waiting lists here onto an Airbus and flew them there. The surgeons told me they would be shocked at the condition of our children. As a category of citizens, our disabled children, young adults, older relatives and all of us who become disabled or acquire a disability are one category of citizen in this republic whose rights are routinely and cruelly obstructed and denied. This section, in particular, remedies that.

Our new Taoiseach, Deputy Simon Harris, has given a commitment to, within the lifetime of this Government, fully ratify all of the protocols of the UN Convention on the Rights of Persons with Disabilities, UNCRPD. I took great hope from that statement. I hope he follows through because that will strengthen the aspirations set out in section 1.

We also know from the recent constitutional referendums, in particular the care referendum, that more than 1.2 million people voted to vindicate independent care supports for our disabled citizens so they can have a statutory legal right to independent supports outside of the family in order that they can live with dignity and self-actualise in the social fabric of this republic and in its economic, cultural and artistic arenas. This is a very particular moment, where 1.2 million people demonstrated an aspiration that we fully vindicate the rights of disabled citizens, as we do in other jurisdictions.

I ask the Government not to be afraid of this. We need to be ambitious. It has been put to me at various points since I introduced the Bill last summer that it would create a burden on the State and cost money. Yes, of course it will cost money. The HSE spent €2.3 billion on disability services in 2022. What do we have? We have dysfunction and unmet need. Australia has a national disability insurance scheme. Although not an ideal example, if we transposed it into an Irish setting, it would cost the taxpayer €4 billion per annum to fund what many would consider to be a very reasonable provision of services and independent living supports for disabled citizens.

I have heard figures bandied about in the House. One Minister, who is not here, suggested such a measure would cost €27 billion per annum. That is not the case. It would cost an extra €1.8 billion per annum. That is all. It is a cost, but what price do we put on the fundamental human rights of disabled citizens? To conclude, with regard to giving statutory rights to disabled citizens based on what is set out in the assessment of need, I want to quote from Bernard O’Regan, the head of disability services at the HSE, specifically as it refers to this first section and section 2A. He told the committee that he would welcome a review of the Disability Act 2005 with the intention of providing a statutory right to services as this would establish parity between a right to an assessment and a right to access services. Mr. O’Regan suggested that due to the advantageous status of an assessment of need as a statutory right, it is necessary for the HSE to prioritise it over the provision of therapeutic supports. What we are suggesting, and this is from the HSE itself, is an enhancement of the Act so it incorporates a right to services as well as a right to assessment. That is what this Bill is about. Mr. O’Regan added that “until we equalise the right to an assessment with the right to a service, there will be a disproportionate orientation of one towards the other”. In fact, what it means is that we have an absence of meaningful services.

I know the Minister of State, Deputy Rabbitte, has a huge commitment to this area. I know that since her appointment as Minister of State with responsibility for disabilities - I hope I am not being unfair in saying this - she has been frustrated at times by a lack of co-operation and compliance from the HSE. When the Taoiseach put in place this new committee within the Office of the Taoiseach, at its first meeting, if I am correctly informed, the HSE did not turn up or send a representative. That is another outflow of this legislation. If it gets to Final Stage and, I hope, is introduced in the Dáil, it would compel the HSE and all the officers of the State and its agencies to fully vindicate the rights of persons with disabilities. Everything in this Bill aligns with the aspirations of the HSE, with the aspirations of the Government and with every single policy document that has been published by the Government on disability rights, up to and including the initiative that the Minister of State launched with the Minister, Deputy O'Gorman, in December.

I thank everybody who co-signed and co-sponsored the Bill from the Green Party, Sinn Féin, Labour, the Civil Engagement Group and my colleagues in the Seanad Independent Group. I am delighted to see them here today. I do not know what the Minister of State is going to say today but I ask the Government not to oppose the Bill and, if possible, to support it. Maybe it is a conversation we can have after this afternoon’s debate.