Letter to the Minister of State Emer Higgins
Minister of State Emer Higgins,
Department of Children, Disability and Equality,
Block 1, Miesian Plaza,
50 – 58 Lower Baggot Street,
Dublin 2, D02 XW14
Re: General Scheme for Disability (Amendment) Bill 2025
Minister of State Higgins, a chara,
I write to you in respect of the General Scheme for the Disability (Amendment) Bill 2025 in order to provide input in respect of this legislative proposal from the perspective of IHREC as the Independent Monitoring Mechanism for UN Convention on the Rights of Persons with Disabilities (‘UNCRPD’).
As the Independent Monitoring Mechanism for the UNCRPD, we have repeatedly called for a review of the Disability Act 2005 (‘the 2005 Act’) and for its proper alignment with the UNCRPD. We raised this most recently in our 2025 submission to the UNCRPD Committee. We welcome the commitment of the Government to review the 2005 Act in light of the UNCRPD, including to examine and update the statutory underpinning for coordinated action across Government on disability issues to strengthen delivery mechanisms for whole-of-Government action. We look forward to engaging substantially with this process.
We recognise that the General Scheme is intended to address deficiencies with the assessment of needs (‘AON’) process in the short term, with a holistic review of the 2005 Act to follow. Nonetheless, it appears to be a piecemeal approach to the more substantive legislative review and change that is required for UNCRPD alignment. The purpose of this letter is to draw your attention to considerations necessary to ensure that legislative reform in respect of any AON process is compliant with international human rights standards.
We have previously raised the deficiencies in respect of the current system to provide for an AON. We note the UN Committee on the Rights of Persons with Disabilities request for information regarding AON reform and measures to ensure holistic, rights-based assessments for disabled children and to address the waiting lists and delays for essential community-based supports and services. In this wider context, we recognise the urgency for change. However, we caution that this urgency does not negate the necessity to reflect the UNCRPD in any amended legislation and in the process through which the legislation is developed.
Centrality of the UNCRPD
The 2005 Act preceded the adoption and Ireland’s ratification of the UNCRPD and applies an understanding of disability that is not UNCRPD-compliant. Any reform of the Act should centralise and advance the UNCRPD’s implementation, including the definition of disability as set out in Article 1 of the Convention, echoed by the 2023 Concluding observations of the UN Committee on the Rights of the Child.
It is regrettable that the General Scheme continues to frame substantial restrictions as resulting from impairment, rather than as a consequence of the interaction between people with impairment with societal barriers preventing their full participation in society.[1] Further, there is no evidence that the proposed legislative changes are aimed at, or will have the effect of, reorienting the AON framework to a rights-based approach to disability in line with the UNCRPD. Progressing legislative reform that does not advance the protections required by the UNCRPD, and to date absent in Irish legislation, is at best a missed opportunity.
Particular regard is warranted in relation to Articles 7, 19 and 25 of the UNCRPD.
- Article 7 (Children with disabilities) recognises that the barriers facing children are not caused by their impairments but by the interaction of their impairment with social structures. The 2005 Act is focused on ameliorating their disability, and the proposed amendment focuses on ameliorating the substantive restriction caused by their disability. A UNCRPD compliant approach would apply a lower threshold for offering suitable support – where support could enhance the participation of the child, rather than only where services can ameliorate the substantive restriction facing the child.[2]
- Article 19 (Living independently and being included in the community) requires that disabled people can access supports to live independently, that are rights-based, person-centred, and defined by choice and control. The 2005 Act and the General Scheme of the Amendment Bill provide no legal entitlement to services and supports designed to further the participation of disabled people in all aspects of community and society. The legal entitlement to an AON has no guarantee of any of the services in the associated service statement being provided. In fact, the services offered, including residential and respite care, may further the isolation and segregation of disabled people from their communities, contravening the requirements of Article 19.
- Article 24 (Education) requires State Parties to recognise the right to education of persons with disabilities. Implementing Article 24 requires policy interventions and investments to ensure that disabled learners succeed throughout the life course and the commencement of the Education for Persons with Special Education Needs Act 2004 (‘EPSEN’). Reform of the 2005 Act should involve consideration of the complexity and bureaucratic burden with disabled people being required to engage in two parallel (and possibly conflicting) assessment processes (one under EPSEN and one under the Disability Act), a process that is not rights-centred or child-centred.
Committed resources, planning, coordination and oversight
Legislative reform must be accompanied by a commitment to adequate investment, together with workforce planning, coordination and alignment across the health, education and social protection sectors. Consideration should be given to minimum competency and training standards. We note that the current proposals will not strengthen enforcement mechanisms. We draw your attention to the assessment of the Ombudsman for Children that this leaves “unresolved core issues relating to rights alignment, statutory coherence and effective accountability within the framework of the 2005 Act” and that “in the absence of a robust statutory underpinning and oversight, operational approaches (such as SOPs) may drift into practices that are inconsistent with statutory requirements - an issue that has been borne out in subsequent litigation regarding the 2020 SOP.”[3]
Meaningful engagement and consultation with disabled people
Reform of the 2005 Act must be designed, implemented and monitored in line with Article 4(3) of the UNCRPD and with General Comment No. 7 of the UNCRPD Committee. Robust processes are required to include the voices of disabled people - including people with psycho-social and/or intellectual disability - in legislative reform, policy design, implementation and monitoring, with regard for child-friendly consultation and participation processes.[4]
Civil society organisations, including DPOs, and public bodies, have engaged in the pre-legislative examination of the General Scheme. However, we are aware of concerns that the timeframe provided for engagement, and the accessibility of the information provided to inform any engagement, is not sufficient to allow for meaningful and effective engagement with DPO/DPROs.[5]
We invite your consideration of the concerns raised in this correspondence and look forward to engaging in the review of the Disability Act. We would welcome an opportunity to meet to discuss these issues with you,
Yours sincerely,
Liam Herrick
Chief Commissioner
Irish Human Rights and Equality Commission
Footnotes
1 This position is reflected by the UN Committee on the Rights of the Child, in its Comment No. 9 (2006). Civil society organisations have observed that that the Scheme does not “expand the definition of ‘need’ to be more holistic as recommended by the UN Committee on the Rights of the Child and in line with the CRPD… it does not amend the definition of disability to include restrictions in participation in education; rather it only recognises restrictions in participation in employment, social and cultural life.” Opening Statement of the Centre for Disability Law and Policy, Joint Oireachtas Committee on Disability Matters, 4 March 2026. Ombudsman for Children’s Office, General Scheme of the Disability (Amendment) Bill 2025 (March 2026), p 2.
2 IHREC’s Disability Advisory Committee has expressed concern that the current proposed changes risk having the effect of removing supports from people who are better placed to function due to available support provided by family or other informal sources, or by virtue of their employment or health status, all of which are potentially temporary. (Disability Advisory Committee Minutes, February 2026.
3 Ombudsman for Children, OCO’s Submission on the General Scheme of the Disability Amendment Bill 2025 (2026) p. 4. 8. Civil society organisations have expressed concern that proposals in the General Scheme would empower the HSE to develop guidelines on the interpretation of legal definitions in the Disability Act, noting the role of the Courts in interpreting legal definitions and possible conflicts of interest on the part of the HSE.
4 The Committee on the Rights of Persons with Disabilities and the Committee on the Rights of the Child have both noted in particular “the importance of ‘including children with disabilities’ in a systematic way in the elaboration and application of legislation and policies to implement the Convention, as well as in other decision-making processes”. Committee on the Rights of the Child and Committee on the Rights of Persons with Disabilities, ‘Joint Statement: The Rights of Children with Disabilities’ (March 2022) , para 5-6.
5 IHREC engages with DPO/DPROs on a regular basis in our role as IMM. At our February 2026 meeting, specific concerns were raised by DPO/DPROs regarding the timeline provided to engagement with the legislative process, with some organisations noting that they were unaware of the proposed legislation and had not been informed of recent developments including the publication of the General Scheme, and regarding the absence of accessible background material to inform and enable engagement.