Mr. Donal O'Shea:

Ar dtús, is mian liom mo bhuíochas a ghabháil leis an gCathaoirleach, na Teachtaí Dála agus na Seanadóirí as a bheith anseo inniu. I thank the committee for the opportunity to address it today on the UN convention. With lived experience of a debilitating rheumatic condition, ankylosing spondylitis, I have had significant input in a personal capacity through the public participation network as well as the civic forum and various European entities, all of which is in keeping with the UNCRPD. I received a global award for social impact at the UNESCO HQ in Paris last month, as well as other accolades at both national and county level.

I wish to outline how my human rights have been supported. Areas such as travel, some housing supports in addition to a number of avenues through which to channel one's advocacy are welcomed. However, the fact one has had to go outside of the State on three separate occasions to reinforce primary human rights speaks volumes about our values and the associated impacts on citizens. In addition to lived experiences, the need for these was reaffirmed following feedback after media participation. These include, first, representation to the European Commission and Parliament, which was made in March 2021, a year after representation for Government formation, to reinforce the civil rights of the disability sector. This was confirmed in a letter by the European Commission Secretariat-General division on citizens, equality, democracy and rule of law on 30 April 2021. I have enclosed this for the committee. As outlined in the letter by the Commission, “It aims to enforce the civil rights of the several millions of persons with disabilities in Europe and abroad.”

Second, representation was made to the office of the director of the World Health Organization to ensure policy is adequately aligned, robust and holistic in nature. This focused on social inclusion, the disability sector, mental well-being and childhood alienation. On returning from a TASC meeting at Buswells Hotel on 7 October 2021 in which seven European countries were represented, it was confirmed by an authentic source that members of the Judiciary were due to get training on mental health the following day.

Third, representation made to Sara Minkara, who is the United States special adviser on international disability rights, led to media coverage on behalf of Government confirming that “disability rights are human rights” two months later in September 2023.

I wish to focus a number of areas. First is healthcare, including mental health. Revelations by RTÉ's health correspondent in March 2022 showed that last year, hospital mistake claims rose above 105,000, "including almost 50,000 relating to clinical care". By any standard, these figures are exorbitant. Timelines for high-end medication need to be reviewed. Having to wait close to a decade after such is authorised by the European Commission is not acceptable. There has not been the required urgency with the chronic disease management programme, as only four conditions were listed by last summer. There are clear variations between the approach of public and private practitioners in the area of mental healthcare, with private practice adopting a much more holistic approach. Much of this culture was dealt with by the advisory team to the State in 2006, during the formation of seechange.ie with an emphasis on emotional well-being. However, some of the primary institutions of the State have not adhered to such advice, respected medical verification, or shown the required regard for how people may be impacted on numerous fronts, including those with chronic pain.

Second is social inclusion. There needs to be a significant transformation here on multiple fronts. There has not been the appropriate alignment between the State, local authorities and related stakeholders to activate funding with the appropriate transparency through the likes of the Wheel and LEADER funding. There needs to be significant incentivisation of sectors to facilitate the activation of funding as securing a lead entity is a prerequisite.

Third is legal and court services. Civic society led on the appointment of a Supreme Court judge by the Minister for Justice to review the civil legal services in May 2022, as there were clear variations between public and private practice. These are recurring themes that have undermined human rights. Provisions have now been made for vulnerability and for domestic cases to be concluded within 30 months. Forty-three NGOs have previously called for this through FLAC.

This also frees up significant time through the courts.

Civic society also led on the reform of the criminal justice strategy. The focus centred on social inclusion, equality and minority groups. The Minister for Justice announced radical reforms to family law six weeks later, on 30 September 2020.

In conclusion, there have been very clear failings with a culture which is too frequently dysfunctional and has shown little regard for the impact of disability. In undermining the disability sector, the State has undermined our democracy. In doing so, it has desecrated the memories of those who paid the ultimate price during the formation of our State and the principles upon which it was founded.

Serious consideration must now be given to having an international delegation go through each of these areas to ensure they are adequately robust and authentic in nature to respect and advance human rights.