Representative advocacy for children with disabilities - the Personal Advocacy Service that never commenced

The Comhairle Act 2000 (No. 1 of 2000) established Comhairle as the statutory body responsible for supporting the provision of information, advice and advocacy services to the public. Comhairle was renamed and reconstituted as the Citizens Information Board (CIB) under the Citizens Information Act 2007. The Comhairle Act 2000, as amended by the Citizens Information Act 2007, is the statutory framework in which the Personal Advocacy Service (sections 7A-7F, inserted by section 5 of the 2007 Act) would sit if commenced. This milestone fixes the host statute that the 2007 amendment modifies.

The Mental Health Act 2001 (No. 25 of 2001) provides limited patient-advocacy entitlements at the tribunal stage of involuntary detention, including the right to legal representation under section 17. The Act does NOT create a general advocacy entitlement for children with disabilities outside the in-patient mental health system. The Act is cited in this case study because it represents the principal pre-2007 statutory acknowledgement that advocacy can be a structural feature of disability-services law in Ireland, while at the same time evidencing the absence of any cross-cutting advocacy entitlement for children outside in-patient psychiatric contexts.

The Ombudsman for Children Act 2002 (No. 22 of 2002) established the Ombudsman for Children's Office (OCO) and conferred a complaints role plus a children's-rights advocacy mandate. The OCO does not provide 1:1 representative advocacy in the sense Inclusion Ireland and EPIC describe; its remit is systemic and complaints-led. The Ombudsman for Children launched the Inclusion Ireland / Centre for Disability Law and Policy report Exploring the Need for a Representative Advocacy Service for Children with Intellectual Disabilities in Ireland in 2024, an act that aligns the OCO institutionally with the case for a representative advocacy service.

The Disability Act 2005 (No. 14 of 2005) conferred a statutory right to an Assessment of Need (AON) and a Service Statement, with a six-month statutory deadline. The Act does NOT include any independent or representative advocacy entitlement for children with disabilities navigating the AON pathway. The non-compliance pattern documented across this dataset (20,209 people awaiting AON beyond the statutory deadline as of March 2026, per the autism-assessment-protocol case study) is one of the principal empirical foundations for the witnesses' 20 May 2026 argument that an advocacy service is structurally necessary to make existing statutory rights enforceable.

The Citizens Information Act 2007 (No. 2 of 2007) renamed Comhairle as the Citizens Information Board and, by section 5, inserted a new Part 4A into the Comhairle Act 2000 comprising sections 7A through 7F to establish a statutory Personal Advocacy Service. Section 7A defines a 'qualifying person' as: (a) a person aged 18 or over with a disability who is unable to obtain a social service without an advocate and is at risk of harm; OR (b) a person under 18 whose sole parent or guardian is themselves a qualifying person, or who has a disability in circumstances where it is unreasonable to expect parental assistance, with documented risk of harm. Section 7B prescribes the application process to the Director (a statutory officer of CIB) who determines qualification. Section 7C confers a right of appeal against refusal. Section 7D specifies the personal advocate's statutory functions: to assist with disability assessments, apply for and obtain social services, pursue rights of review and appeal, and train and support the beneficiary and their family/carers. Sections 7E-7F deal with reporting, governance and resources. CRITICAL: section 5 of the 2007 Act has never been commenced. The Revised Acts annotation maintained by the Law Reform Commission marks the inserted sections 'not commenced as of date of revision'. The 19-year non-commencement of these provisions is the central indictment that runs through the 20 May 2026 JCDM session, every Inclusion Ireland survey, and the Centre for Disability Law and Policy's February 2025 research. The Act has been on the statute book in unenforced form across the 30th, 31st, 32nd, 33rd and 34th Dála.

The National Advocacy Service for People with Disabilities (NAS) was established under the commenced parts of the Comhairle Act 2000 (as amended by the Citizens Information Act 2007) and is funded by the Citizens Information Board. NAS provides independent, free, confidential, representative advocacy for adults with disabilities (effectively 18 years and over). NAS is NOT the Personal Advocacy Service contemplated by sections 7A-7F: it operates without the statutory qualifying-person architecture, has no enforceable right of access, and excludes children. Witnesses on 20 May 2026 repeatedly identified NAS as the closest existing model in Ireland but as itself underfunded and operating waiting lists - an existence proof that representative advocacy is workable in Ireland, paired with a structural argument that the State has chosen to deliver it for adults via a non-statutory, resource-capped channel rather than commencing the statutory mechanism the Oireachtas legislated for in 2007.

The Assisted Decision-Making (Capacity) Act 2015 (No. 64 of 2015) established a statutory framework of decision-supporters, co-decision-makers and decision-making representatives, replacing the wardship system. CRITICAL CARVE-OUT: the Act applies only to adults (18 years and over). The Act was not commenced until 26 April 2023 - itself a seven-and-a-half year drift between enactment and commencement that parallels the 2007 Personal Advocacy Service non-commencement. The Decision Support Service of the Mental Health Commission administers the Act. The Act provides no decision-support or advocacy mechanism for children with disabilities, and the child-to-adult transition point is one of the principal gaps the witnesses on 20 May 2026 identified. The Select Committee on Disability Matters subsequently scrutinised the Assisted Decision-Making (Capacity) (Amendment) Bill 2026 in March 2026.

Ireland ratified the UN Convention on the Rights of Persons with Disabilities (UNCRPD) on 20 March 2018. Ratification engages Articles 7 (Children with disabilities), 12 (Equal recognition before the law), 19 (Living independently and being included in the community), 24 (Education), 25 (Health) and 26 (Habilitation and rehabilitation). Article 7(3) is the operative provision for advocacy: 'States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right.' Ireland has NOT ratified the Optional Protocol to the UNCRPD. The 2018 ratification is the principal external legal anchor for the witnesses' 20 May 2026 argument that the Citizens Information Act 2007 Personal Advocacy Service text (drafted before ratification, embedded in pre-CRPD medical-model language) must be updated to a UNCRPD-compatible social-model framing as a condition of commencement.

In 2018 the UN Committee on the Rights of Persons with Disabilities adopted the List of Issues Prior to Reporting (LOIPR) for Ireland's initial State Report (CRPD/C/IRL/Q/1, available at digitallibrary.un.org/record/3902334). The LOIPR is the baseline against which Ireland's initial report (filed November 2021) was assembled. Recommendations 7 (Children with disabilities) and 12 (Equal recognition before the law) within the 2018 LOIPR are the most relevant primary-source UN-level anchors for the representative-advocacy argument as of 2026-06-02, because no UN CRPD Committee concluding observations on Ireland have yet been published - Ireland was NOT among the countries reviewed at the 33rd session of the Committee (11-29 August 2025), and the 21st Pre-Sessional Working Group (1-5 September 2025) has assigned Ireland a List of Issues symbol (CRPD/C/IRL/QPR/2-3) which had not been published as a downloadable text as of 2026-06-02.

Ireland filed its initial State Report under the UN Convention on the Rights of Persons with Disabilities in November 2021. The report was the substantive first deliverable against the 2018 LOIPR. The case study notes the date because the seven-year gap between ratification (March 2018) and the next stage of treaty-body engagement (List of Issues for the combined 5th-and-6th periodic cycle, still pending publication as of 2026-06-02) is one of the structural reasons the witnesses on 20 May 2026 framed the National Human Rights Strategy for Disabled People 2025-2030 - not the CRPD review process - as the immediate accountability home for the representative-advocacy task force ask.

The independent review of services at South Kerry CAMHS led by Dr Seán Maskey, commissioned by the HSE following whistleblower disclosures, reported in January 2022. Of approximately 1,300 children treated by the service over a multi-year window, the review found 227 children had been exposed to risk of serious harm and 46 had suffered significant harm. The review documented particular failures in care for children with intellectual disabilities, inappropriate antipsychotic prescriptions and high-dose psychotropic medication. The Maskey Report triggered the subsequent national CAMHS review by the Mental Health Commission's Office of the Inspector of Mental Health Services (Dr Susan Finnerty) and is the canonical Irish example of why children navigating mental health and disability services need an independent advocate able to escalate concerns outside the line-management chain of the service itself. The Maskey Report's full canonical PDF URL on mhcirl.ie was unavailable to automated retrieval as of 2026-06-02 (HTTP 404); the report's content and findings are corroborated by the Mental Health Commission's subsequent interim and final national CAMHS reports.

Dr Susan Finnerty, Inspector of Mental Health Services at the Mental Health Commission, published the interim report of her national review of Child and Adolescent Mental Health Services (CAMHS) in January 2023. The interim report described systemic risks to children using CAMHS, documented unsafe prescribing patterns, and surfaced staffing levels for CAMHS-Intellectual Disability (CAMHS-ID) teams at roughly 25% of recommended levels (later updated to 38-43% by parliamentary questions in 2025-2026; see the 2026-04-13 milestone). The interim report's role in this case study is to establish that the structural failure of CAMHS-ID predates and post-dates the 2007 Personal Advocacy Service non-commencement: the State has had documented evidence of the harm pattern since at least 2023 and has not commenced the statutory mechanism that would have given affected children an independent advocate with a statutory right of access.

EPIC (Empowering People in Care) published Headphones, Odd Shoes & A Second Chance at Life: An Exploration of the Experience of Children in Care & Care-leavers with Disabilities in March 2023. The report, authored by independent researcher Deborah Erwin and funded by the Irish Human Rights and Equality Grants Scheme, captured the experience of eight children and young people with disabilities in care (six in online focus groups; two in interviews) across foster, residential and aftercare settings. The report's load-bearing Next Steps recommendation, in the row titled 'Apply a rights-informed approach to care', states verbatim: 'DCEDIY is currently undertaking a review of the Child Care Act, 1991, with a view to amending the legislation this year. It is critical that the Department establishes the right to independent advocacy in the upcoming Child Care (Amendment) Bill to enable care-experienced children and young people with disabilities to access independent advocacy services.' This is the verbatim 2023 textual basis for EPIC's 20 May 2026 ask. It locates the statutory hook in the Child Care (Amendment) Bill - distinct from Inclusion Ireland's hook in the Citizens Information Act 2007 - but anchors the same substantive right. The report also surfaced the structural anomaly that EPIC's visiting advocates routinely enter residential settings that mix care-system children (entitled to EPIC advocacy under EPIC's Tusla-funded remit) and disabled children outside the care system (not entitled), producing a two-tier provision inside the same building.

Following the January 2023 interim report, the Mental Health Commission's Office of the Inspector of Mental Health Services published its final national review of CAMHS with 49 recommendations. The final report's specific URLs on mhcirl.ie were unavailable to automated retrieval as of 2026-06-02 (HTTP 404 against the canonical 2023 paths); the report's existence and recommendation count are corroborated by subsequent Oireachtas debates and press coverage. The recommendations span clinical governance, staffing, prescribing safety and audit. The case study cites the report as the operational record that the State has been on notice since 2023 that CAMHS is structurally unsafe for children with intellectual disabilities, the cohort the Personal Advocacy Service in the Citizens Information Act 2007 was designed to cover.

The Assisted Decision-Making (Capacity) Act 2015 was commenced on 26 April 2023, seven and a half years after enactment. The Decision Support Service of the Mental Health Commission began operations on the same day. The commencement of AMCAP 2015 is cited as a comparable timeline against the 19-year (and counting) non-commencement of section 5 of the Citizens Information Act 2007: both Acts established statutory decision-support / advocacy architecture, both were left on the statute book for years, and the State eventually elected to commence AMCAP while leaving the Personal Advocacy Service for disabled children dormant. The asymmetry - adult decision-support commenced, child-and-adult representative advocacy not commenced - is a structural feature of the policy landscape, not an artefact of any one Government.

The Joint Committee on Disability Matters of the 33rd Dáil published a report on 24 January 2024 calling on the State to ratify the Optional Protocol to the UN Convention on the Rights of Persons with Disabilities before the end of that Dáil. The report did not specifically table representative advocacy for children, but it established the JCDM as the standing parliamentary committee with the most active engagement on UNCRPD implementation - the predecessor record that informs why the 20 May 2026 session of the successor committee (34th Dáil) was the natural forum for the representative advocacy ask.

Inclusion Ireland and the Centre for Disability Law and Policy at the University of Galway published Exploring the Need for a Representative Advocacy Service for Children with Intellectual Disabilities in Ireland (Burns, de Bhailís and Flynn, dated 26 February 2025 in the canonical citation, with launch in November 2024). The launch was hosted by the Ombudsman for Children. The report's central empirical finding is that there is no statutory mechanism guaranteeing representative advocacy for disabled children in Ireland. Dr Clíona de Bhailís - the second co-author - was the post-doctoral researcher whose presentation of the findings at JCDM on 20 May 2026 anchored the CDLP-side evidence. Verbatim from Dr de Bhailís's 20 May 2026 opening statement: 'Overall, the research found there is a clear gap in the provision of representative advocacy for children with intellectual disabilities in Ireland. The key informants interviewed in the research strongly supported the establishment of a children's advocacy service. They recognised the need for a service and that it should be human rights based and child focused or child led.' The OCO's role in launching the report institutionally aligned the Ombudsman for Children with the case for a representative advocacy service.

The Programme for Government published in January 2025 by the incoming Fianna Fáil / Fine Gael / Independents coalition includes commitments on disability services, the Autism Innovation Strategy, the implementation of the Disability Capacity Review, and the development of a national human rights strategy for disabled people. The Programme does NOT commit to commencing section 5 of the Citizens Information Act 2007 or establishing a statutory representative advocacy service for children with disabilities. Mr Gáibhin McGranaghan's 20 May 2026 ask to the JCDM - commence section 5 - is therefore not an existing PfG commitment that is being delivered slowly; it is a statutory promise the State has not adopted as a delivery target across three Programmes for Government since 2007.

Inclusion Ireland conducted three national cohort surveys in June 2025 (adults with intellectual disabilities; family members and supporters of adults; parents of children under 18) to inform its Pre-Budget Submission for Budget 2026. The three surveys received over 1,000 responses in total, with the largest concentrations of respondents in Dublin, Cork and Limerick. Headline findings (published July 2025 in the submission '1,000 Voices, One Message: Invest in Our Rights in 2026'): 78% of respondents do not believe Government listens to their voices in decisions made about the Budget; 75% of families ranked access to therapies (SLT, OT) as their top priority for their child's support; when asked 'what would good support look like for your child', responses split 33.3% advocacy / information / peer support, 30.3% therapies and professionals, 36.4% home support, respite, other - putting advocacy at parity with therapies. The submission's page 11 finding is the empirical-language anchor for the JCDM 20 May 2026 ask: 'Research we commissioned from the University of Galway found no statutory mechanism guaranteeing representative advocacy for disabled children, leaving families without a clear route to raise concerns or influence care decisions. Establishing a national advocacy service would help address this gap and restore trust, while giving effect to children's rights under Article 12 of the UNCRPD.'

The 33rd session of the UN Committee on the Rights of Persons with Disabilities ran from 11 to 29 August 2025 in Geneva. The Committee reviewed the Democratic People's Republic of Korea, Finland, Kiribati, Maldives, Mali, and the State of Palestine. Ireland was NOT among the countries reviewed. The original 8GI brief drafted in early June 2026 had referred to 'the UN CRPD Committee's August 2025 concluding observations on Ireland (CRPD/C/IRL/CO/1)'; the international-disability-alliance compilation of 33rd-session concluding observations confirms no such observations on Ireland exist. Ireland was instead assigned to the 21st Pre-Sessional Working Group (1-5 September 2025) for adoption of a List of Issues for the combined 5th-and-6th periodic report cycle. The symbol number CRPD/C/IRL/QPR/2-3 had been assigned but the text was not yet published as of 2026-06-02 ('Sorry there is no files available' on tbinternet.ohchr.org). The implication for this case study is that the live UN-level anchors are the Convention text itself (Articles 7 and 12), General Comment No. 1 (2014) on Article 12, General Comment No. 7 (2018) on the active involvement of persons with disabilities through their representative organisations, and the 2018 LOIPR - not any post-2018 concluding observations.

On 3 September 2025 the Department of Children, Disability and Equality published the National Human Rights Strategy for Disabled People 2025-2030 at a launch in Dublin's Mansion House. Launch speakers: Taoiseach Micheál Martin TD; Tánaiste Simon Harris TD; Minister for Children, Disability and Equality Norma Foley TD; Minister of State for Disability Hildegarde Naughton TD. The Strategy is structured around five Pillars (Inclusive Learning and Education; Employment; Independent Living and Active Participation in Society; Wellbeing and Health; Transport and Mobility) and 23 numbered Commitments. The two Commitments most relevant to the representative-advocacy question are Commitment 17 (Youth Mental Health - Single Point of Access for CAMHS / Primary Care / Disability services) and Commitment 18 (Supporting all Disabled Children and their Families - addressing CDNT capacity, primary-care waiting lists, and AON waiting lists). CRITICAL FINDING: a full-text search of the 64-page published Strategy for the lemma 'advoc-' returns only references to (i) disabled people, their families and Disabled Persons' Organisations advocating for their rights (historical / aspirational framing in the Forewords and Introduction) and (ii) the definition of Disabled Persons' Representative Organisations (DPOs) in the Statement on Language. The Strategy contains NO mention of the National Advocacy Service for People with Disabilities (NAS), NO mention of a Personal Advocacy Service, NO mention of section 5 of the Citizens Information Act 2007, NO mention of sections 7A-7F of the Comhairle Act 2000, and NO mention of a representative-advocacy task force. The First Programme Plan of Actions 2025-2026 identifies six Strategic Focus Networks (Digital and Assistive Technology, Cost of Disability, Intersectionality, Accessibility, Research and Data, Stakeholder Engagement). There is no Representative Advocacy for Children with Disabilities Strategic Focus Network. This is the structural gap Mr Gáibhin McGranaghan flagged at the JCDM on 20 May 2026: the Strategy IS the witness-named home for a task force, AND the Strategy as published does not contain such a task force.

Burns, E., de Bhailís, C. and Flynn, E. (26 February 2025) Exploring the Need for a Representative Advocacy Service for Children with Intellectual Disabilities in Ireland. Centre for Disability Law and Policy, University of Galway, commissioned by Inclusion Ireland. The research mapped existing advocacy provision in Ireland (NAS for adults, EPIC for children in care, the Mental Health Act 2001 tribunal-stage provisions) and confirmed the absence of any statutory representative advocacy mechanism for children with disabilities outside those narrowly-scoped channels. The research is cited in footnote 6 of the Inclusion Ireland July 2025 Pre-Budget Submission and was the substantive evidence base Dr Clíona de Bhailís presented to the JCDM on 20 May 2026. Verbatim from the JCDM testimony: 'While some parents saw the potential benefit of a representative advocacy service... they were concerned about or reluctant to recommend the establishment of what could become yet another intermediary agency, or look toward yet another round of paperwork and waiting lists.' This caveat - design risk acknowledged by the parents the research interviewed - is the principal structural objection to a poorly-designed advocacy service that runs alongside the case for commencing the existing statutory architecture.

HSE South West published a look-back review into the North Kerry Child and Adolescent Mental Health Service on 18 February 2026. The review identified potential risk in 209 cases. The pattern documented in North Kerry - clinical-governance failures, prescribing risks, gaps in supervision - closely parallels the South Kerry findings of the Maskey Report (January 2022). The persistence of the same failure pattern in a different geographic area four years after Maskey is independent evidence that CAMHS, including the CAMHS-ID sub-service that should serve children with intellectual disabilities, is a serial-failure surface rather than a series of isolated incidents - and is the principal evidentiary backdrop against which Deputy Liam Quaide TD's CAMHS-ID funding figures at the JCDM on 20 May 2026 should be read.

On 19 February 2026 the HSE Chief Executive issued an unequivocal apology for the failures documented in the North Kerry CAMHS look-back review. The apology and the subsequent commitment to a compensation scheme (extended on 26 March 2026 - see linked milestone) form part of the public record against which the State's continuing non-commencement of section 5 of the Citizens Information Act 2007 must be read. The apology operationally concedes the existence of the harm pattern; the non-commencement operationally preserves the absence of any independent representative-advocacy mechanism through which affected children could have escalated concerns at the time.

On 25 March 2026 the Joint Committee on Disability Matters (34th Dáil) published its Report on Inclusive Education for Persons with Disabilities. The report did not specifically table representative advocacy but recommended structural reforms across the school-based supports system that fed into the same family-experience evidence base the 20 May 2026 witnesses drew on. The report's publication confirms the JCDM is the most active parliamentary committee on UNCRPD implementation in the 34th Dáil and was the natural forum for the representative advocacy session.

On 26 March 2026 the State extended the North Kerry CAMHS compensation scheme to families affected by the documented failures in the look-back review. The compensation route is ex post: it does not provide any of the affected children with prospective access to an independent representative advocate. The case study cites the extension as the latest in the operational chain of remedies the State is providing through retrospective administrative mechanisms rather than through prospective statutory advocacy provisions enacted in 2007 and not yet commenced.

Cianan Brennan, writing in the Irish Examiner on 13 April 2026 ('Services for children with intellectual disabilities funded at half needed for functioning service'), reported HSE replies to a batch of parliamentary questions tabled by Deputy Liam Quaide TD (Social Democrats, Cork East). The HSE replies confirmed: CAMHS-Intellectual Disability services are funded at 43% of the staffing levels required by the HSE's own published CAMHS-ID Model of Service; actual resourcing (accounting for unfilled posts) is closer to 38%; an additional 160 clinical posts and 16 administrative roles would be required to bring the service to the model-of-care baseline; the HSE South-West CAMHS-ID team serves a population of approximately 660,000. Deputy Quaide's framing on the data: '[The figures show a] tragic lack of ambition by the Government even to deliver the minimum staffing baseline for a cohort of young people whose needs are particularly complex. These are among the most vulnerable young people in our mental health system, yet the specialist service meant to support them remains far too patchy, far too limited in its multidisciplinary depth, and, in some parts of the country, non-existent.' The specific PQ reference numbers behind the 38% / 43% figures had not been retrieved at primary source as of 2026-06-02 (the Houses of the Oireachtas HTML search UI rejected automated requests and the public API did not return Quaide's PQs by member-id filter). A live 8GI public submission would either cite Brennan's article as verifiable secondary corroboration, request the PQ refs from the Houses of the Oireachtas Library and Research Service, or submit a written PQ via a friendly TD to put the underlying HSE reply on the public record under a new reference. Note on roles: the JCDM 20 May 2026 transcript records Deputy Quaide as 'a former practising psychiatrist'. The Oireachtas member record describes him as a clinical psychologist. The Oireachtas record is canonical; the JCDM transcript framing appears to be an in-room imprecision.

On 20 May 2026 the Joint Committee on Disability Matters (34th Dáil / 27th Seanad), chaired by Deputy Maurice Quinlivan TD (Sinn Féin, Limerick City), held a public session titled 'Representative Advocacy Services for Children with Disabilities: Discussion'. Members present (per the transcript front-matter): Teachtaí Dála Martin Daly, Seamus Healy, Keira Keogh, Ruairí Ó Murchú, Liam Quaide; Seanadóirí Maria Byrne, Tom Clonan, Laura Harmon, Margaret Murphy O'Mahony. Apologies: Deputies Dempsey, Toole and Carrigy; Senator Bradley. Five witnesses appeared: Dr Clíona de Bhailís (post-doctoral researcher, CDLP, University of Galway, online); Ms Derval McDonagh (CEO, Inclusion Ireland); Mr Gáibhin McGranaghan (Policy and Public Affairs Co-ordinator, Inclusion Ireland); Mr Wayne Stanley (CEO, EPIC); Ms Róisín Webb (Research and Policy Manager, EPIC). Three convergent positions emerged. (1) Inclusion Ireland / CDLP: a national, State-funded, independent representative advocacy service for children with disabilities (not limited to intellectual disability), framed as a statutory right of the child, designed by a task force embedded in the National Human Rights Strategy for Disabled People rather than as a free-standing initiative. (2) EPIC: every child in care should have a statutory right to an independent advocate, with priority for children with disabilities in residential care and children with communication needs. (3) Operational anchor (Mr McGranaghan): commence section 5 of the Citizens Information Act 2007 (which inserts sections 7A-7F into the Comhairle Act 2000), update the language to the UNCRPD social model, and make child eligibility under section 7A(3)(b) unqualified. Substantive framing was set by the first member question, from Deputy Liam Quaide TD: 'services for children with disabilities are now so fragmented, delayed, under-resourced and, in some cases, entirely absent that we could end up in an absurd situation whereby an overwhelming number of children would need, and should by rights be offered, advocacy to cope with the realities of that fragmentation and failure. In other words, advocacy could become necessary not because of some exceptional difficulty in the child's life but because the services are so pervasively broken.' Quaide closed his first question: 'How does one prevent an advocacy service essentially becoming a second shadow system, the impossible task of which is to compensate for the systemic failures across health, education, disability and social care services?' Mr Wayne Stanley's reply established the EPIC framing: 'What we do not want is an advocacy system that in essence holds the hand of the family or child while they walk into a wall. One of the first steps in advocacy is understanding what the needs are and putting those back into the system.' Ms Derval McDonagh's contribution articulated the integrated-supports ask: 'We would like to see advocacy as part of an ecosystem of supports for children and families... What we always say at Inclusion Ireland is that the Holy Grail we are looking for involves those integrated supports where the child is at the centre and all services and supports are operating in a fluid and dynamic way around that child.' Mr Stanley's response to Quaide's second question on the media-attention dilemma: 'If we are having to ask people to pull their heart out of their chest and nail it to the wall to raise an issue, then the system has failed those families.' Mr McGranaghan, in answer to Senator Laura Harmon's 'number one ask' question: 'the uncommenced section of the Citizens Information Act 2007, that is section 5, bearing in mind that has been enacted nearly 20 years ago, to ensure that is updated with the UNCRPD's understanding of disability in a social model. It introduced a qualified route for disabled children so to make sure that it would be unqualified would be our ask.' Mr Stanley's tabling of the EPIC waiting list: 'To be brutally honest, we currently have a list of over 100 young people waiting to get EPIC advocates.' Dr Clíona de Bhailís on the research: 'Overall, the research found there is a clear gap in the provision of representative advocacy for children with intellectual disabilities in Ireland. The key informants interviewed in the research strongly supported the establishment of a children's advocacy service. They recognised the need for a service and that it should be human rights based and child focused or child led.' The session ended with no concrete legislative proposal and an explicit committee ask for outside engagement; the chair's closing line scheduled the next meeting for 27 May 2026. As of 2026-06-02 no later meeting record on this question was published on the Oireachtas API.

1. Citizens Information Act 2007, section 5 - inserts ss.7A-7F into Comhairle Act 2000 (Personal Advocacy Service)· waypointnot served— Not commenced. The Inclusion Ireland 'number one ask' on 20 May 2026 is to commence this section, update it to UNCRPD social-model language, and make child eligibility under s.7A(3)(b) unqualified.
2. Comhairle Act 2000, sections 7A-7F (as inserted by Citizens Information Act 2007 s.5)· waypointnot served— The actual statutory text of the Personal Advocacy Service. Defines qualifying-person test, application process, appeal right, advocate's functions and reporting. Currently dormant.
3. Child Care (Amendment) Bill - EPIC's 2023 statutory hook· waypointnot served— EPIC's March 2023 'Headphones, Odd Shoes' report recommended establishing the right to independent advocacy in the Child Care (Amendment) Bill. The bill route is the statutory home EPIC has named since 2023; it is distinct from Inclusion Ireland's CIA 2007 route but underwrites the same right.
4. Disability Act 2005 - host statute for the AON pathway· waypoint— Commenced in part. The Act provides for the AON / Service Statement architecture but contains no advocacy entitlement; the witnesses' argument is that the AON pathway is unenforceable in practice without an independent advocate for the cohort the Act is meant to serve.
5. Assisted Decision-Making (Capacity) Act 2015 - adult-only architecture· waypoint— Commenced 26 April 2023, seven and a half years after enactment. Excludes children. Cited as the comparable timeline against which the Personal Advocacy Service non-commencement is read.
6. Mental Health Act 2001 - tribunal-stage advocacy only· waypoint— Tribunal-stage representation right under section 17 for involuntary patients. Does not provide a general advocacy entitlement for children with disabilities outside in-patient psychiatric contexts.
7. Ombudsman for Children Act 2002 - children's-rights advocacy mandate, not 1:1 advocacy· waypoint— Provides for a complaints role and systemic children's-rights advocacy. Does not provide statutory 1:1 representative advocacy for children with disabilities.
8. UNCRPD Articles 7 and 12 - international anchor· waypoint— Ireland ratified 20 March 2018. Articles 7(3) (children) and 12(3) (support in exercising legal capacity) are the operative provisions. General Comments No. 1 (2014) and No. 7 (2018) carry the binding interpretation.
9. National Human Rights Strategy for Disabled People 2025-2030 - Commitments 17 and 18· waypointnot served— Strategy published 3 September 2025. Commitments 17 (Youth Mental Health) and 18 (Supporting Disabled Children and their Families) contain no representative-advocacy text. The witnesses' ask is to add a representative-advocacy task force commitment via the two-yearly Programme Plan of Actions mechanism.

Section 5 of the Citizens Information Act 2007, which inserts sections 7A-7F into the Comhairle Act 2000 to establish a statutory Personal Advocacy Service, has not been commenced in the 19 years since enactment on 21 April 2007. The Revised Acts annotation maintained by the Law Reform Commission records the relevant provisions as 'not commenced as of date of revision'. Across that 19-year period the State has elected to fund the National Advocacy Service for People with Disabilities (NAS) for adults as a non-statutory channel, has commenced parts of the Comhairle Act 2000 / CIA 2007 framework other than section 5, has commenced the Assisted Decision-Making (Capacity) Act 2015 (in 2023, after a seven-and-a-half year drift), and has launched the Autism Innovation Strategy and the National Human Rights Strategy for Disabled People without filling the section 5 commencement gap. The structural impact on children with disabilities is the absence of any statutory right of access to an independent representative advocate from infancy through age 18, in any sector - health, education, housing, transport, justice - in which an enforceable statutory architecture for advocacy might have made a difference.

Per replies to parliamentary questions tabled by Deputy Liam Quaide TD (Social Democrats, Cork East) and reported by Cianan Brennan in the Irish Examiner on 13 April 2026, CAMHS-Intellectual Disability services nationally are funded at 43% of the staffing levels required by the HSE's own published CAMHS-ID Model of Service. Actual resourcing (accounting for unfilled posts) is approximately 38%. Per Quaide's testimony at the JCDM on 20 May 2026, the HSE's model requires per-team: 1 consultant psychiatrist, 1 junior doctor (NCHD), 2 psychologists, 2 clinical nurse specialists, 2 social workers, 1 occupational therapist, 1 speech and language therapist, 1 administrator (11 posts per team). In the best-staffed teams the actual position is 1 consultant psychiatrist + 1 psychologist + 1 CNS - roughly 3 of 11 model positions. Sixteen teams are required nationally for full coverage; approximately ten are operational. Cavan-Monaghan has no CAMHS-ID team at all. The HSE confirmed that an additional 160 clinical posts and 16 administrative roles would be required to bring the service to the model-of-care baseline. The HSE South-West CAMHS-ID team serves a population of approximately 660,000. Quaide's policy framing: 'they are being failed twice - by the absence of proper services, and by a system that cannot properly even recognise their needs.' The CAMHS-ID funding gap is the primary empirical evidence behind the witnesses' 20 May 2026 argument that statutory representative advocacy is a structural necessity rather than a discretionary add-on. NOTE: specific PQ reference numbers (NNNNN/26 format) had not been independently retrieved from oireachtas.ie as of 2026-06-02; the figures are anchored in Brennan's article as verifiable secondary corroboration and reproduced on the Oireachtas record by Quaide himself in the JCDM transcript.

Inclusion Ireland's June 2025 national survey series, published in the July 2025 Pre-Budget Submission 1,000 Voices, One Message: Invest in Our Rights in 2026, found that 78% of respondents do not believe that the Government listens to their voices in decisions made about the Budget. The figure rose to over 90% on Budget-decision-specific cohorts in Inclusion Ireland's Budget Survey 2024 (referenced but not reproduced in the 2026 submission). Mr Gáibhin McGranaghan cited both figures at the JCDM on 20 May 2026: '78% of respondents indicated that they felt the Government did not listen to them... this figure has gone up to over 90% feeling the Government does not listen to them.' The trust-deficit data is the principal empirical anchor for the structural risk that 'highlighting' via a State-managed advocacy mechanism may be undercut from the start if the State is itself the entity families have lost trust in. The figure also rebuts any State-side counterargument that the AON / CDNT / CAMHS pathway is broadly working and only marginally needs supplementing with advocacy.

When Inclusion Ireland's June 2025 survey asked parents 'What would good support look like for your child?' the responses split into three categories at near parity: 33.3% advocacy, information, peer support; 30.3% therapies and professionals; 36.4% home support, respite, other. One third of all surveyed families ranked advocacy / information / peer support at parity with therapies (the categories the State funds via CDNT staffing) and respite (the category the State funds via direct grants). The finding rebuts any framing of advocacy as a niche or marginal demand: it is, in the lived-experience evidence, one of the three main pillars of what 'good support' means to families with children with intellectual disabilities. The same submission, on page 11, frames the explicit no-statutory-advocacy gap: 'Research we commissioned from the University of Galway found no statutory mechanism guaranteeing representative advocacy for disabled children, leaving families without a clear route to raise concerns or influence care decisions. Establishing a national advocacy service would help address this gap and restore trust, while giving effect to children's rights under Article 12 of the UNCRPD.'

Mr Wayne Stanley told the JCDM on 20 May 2026: 'To be brutally honest, we currently have a list of over 100 young people waiting to get EPIC advocates.' EPIC is the only independent organisation in Ireland providing a direct 1:1 advocacy service to children and young people in the care of the State or in aftercare services. EPIC is funded by Tusla and operates under a remit that covers care-experienced children and young people up to age 26. EPIC's statutory remit does not cover children with disabilities who are placed in residential settings outside the care system. The 2023 EPIC report Headphones, Odd Shoes & A Second Chance at Life documents the structural consequence: EPIC's visiting advocates routinely enter residential settings that mix care-system children (entitled to EPIC advocacy) and disabled children outside the care system (not entitled), producing a two-tier provision inside the same building. The 100+ waiting list quantifies the demand that EPIC cannot meet inside its existing Tusla-funded resources, and is the operational baseline against which any commencement of section 5 of the CIA 2007 must be costed.

Indecon's December 2021 study The Cost of Disability in Ireland, commissioned by the Department of Social Protection, found that households with disabled children can face additional costs exceeding EUR 14,000 annually. Inclusion Ireland's July 2025 submission cites the figure on page 12 and underlines that less than 2% of surveyed families reported no financial strain from additional supports; 59% said they had to cut back in other areas; and nearly a quarter (24%) said they could not afford to pay for any services at all. The figure is the empirical anchor for the 'hidden subsidy from disabled families to the State' framing the witnesses on 20 May 2026 referenced implicitly: parents who give up paid work to advocate for their child are absorbing both the direct cost of disability and the time cost of the State's missing advocacy mechanism. Verbatim from the Inclusion Ireland submission (parent quote, p.12): 'I'm a single parent working full-time just to afford private therapies, consultants, and childcare . . . even if I can find someone who'll take [my son] . . . There's no support during school holidays . . . I am broken.'

The National Human Rights Strategy for Disabled People 2025-2030, published by the Department of Children, Disability and Equality on 3 September 2025 (64 pages), is the principal policy instrument under which representative advocacy for children with disabilities would naturally sit. A full-text search of the published Strategy for the lemma 'advoc-' returns only references to disabled people, their families and Disabled Persons' Organisations advocating for their rights (historical / aspirational framing) and the definition of DPOs in the Statement on Language. The Strategy contains NO mention of the National Advocacy Service for People with Disabilities (NAS), NO mention of a Personal Advocacy Service, NO mention of section 5 of the Citizens Information Act 2007, NO mention of sections 7A-7F of the Comhairle Act 2000, and NO mention of a representative-advocacy task force. Commitment 17 (Youth Mental Health, p.39) commits to a Single Point of Access across Primary Care / Disability / CAMHS but does not name representative advocacy. Commitment 18 (Supporting all Disabled Children and their Families, p.39) commits to addressing CDNT capacity, primary-care waiting lists and AON waiting lists but does not name representative advocacy. The First Programme Plan of Actions 2025-2026 names six Strategic Focus Networks (Digital and Assistive Technology - HSE lead; Cost of Disability - Department of Social Protection lead; Intersectionality - DCDE lead; Accessibility - NDA lead; Research and Data - NDA + relevant Departments lead; Stakeholder Engagement - DCDE lead) and no Representative Advocacy for Children with Disabilities Strategic Focus Network. This is the structural gap Inclusion Ireland flagged on 20 May 2026 as the principal addressable policy lever: the Strategy provides the governance pipework (Cabinet Committee on Disability, Senior Officials Group, Delivery and Monitoring Committee with DPO representation, two-yearly Programme Plans) into which a representative-advocacy task force could slot via the Second Programme Plan of Actions (2027-2028) without requiring a new strategy or a new agency.

The 20 May 2026 session generated three formulations of the same structural risk. (1) Deputy Liam Quaide TD: 'How does one prevent an advocacy service essentially becoming a second shadow system, the impossible task of which is to compensate for the systemic failures across health, education, disability and social care services?' (2) Mr Wayne Stanley: 'What we do not want is an advocacy system that in essence holds the hand of the family or child while they walk into a wall. One of the first steps in advocacy is understanding what the needs are and putting those back into the system.' (3) Mr Stanley again: 'If we are having to ask people to pull their heart out of their chest and nail it to the wall to raise an issue, then the system has failed those families.' The convergent finding is that advocacy can only work as a mechanism for enforcing existing rights and surfacing systemic failure if the rights it enforces are themselves statutory and the surfacing mechanism is itself binding on the State. The Personal Advocacy Service architecture in the CIA 2007 was drafted to be exactly this - a statutory qualifying-person mechanism with a Director, applications, refusals appealable, and statutory functions for the advocate including the right to pursue rights of review and appeal. The 19-year non-commencement of section 5 has stripped the statutory enforceability dimension from every advocacy intervention happening on the ground today. Re-introducing it is the single most direct way to convert advocacy from a patch on a broken system into the rights-enforcement mechanism the Oireachtas legislated for in 2007.

The Autism Innovation Strategy (July 2024) committed Ireland to its first public adult autism assessment pathway. The HSE's Autism Assessment and Intervention Pathways Protocol, launched 26 May 2026, delivers the assessment side of that commitment. Neither the Strategy nor the Protocol confers a statutory right to representative advocacy at any stage of the assessment or post-diagnosis pathway. The Assisted Decision-Making (Capacity) Act 2015 then provides decision-support architecture (commenced 26 April 2023) only for adults. The result is a documented transition cliff: a child with intellectual disability moving through CAMHS-ID (funded at 38%), into adulthood (where CAMHS-ID ends), into an adult assessment pathway (which has only just opened), under a decision-support regime (which excluded them until 18) has at no point had a statutory right of access to an independent representative advocate. The CIA 2007 section 5 commencement would close this transition gap, because the Personal Advocacy Service is age-inclusive (sections 7A(3)(a) covers adults; 7A(3)(b) covers children) - the same statute would carry the same architecture across both sides of the 18-year-old boundary.

Section 5 of the Citizens Information Act 2007 inserts a new Part 4A into the Comhairle Act 2000 comprising sections 7A through 7F to establish a statutory Personal Advocacy Service. Section 7A defines 'qualifying person' on a two-limb test: (a) adults 18+ with a disability unable to obtain a social service without an advocate and at risk of harm; (b) persons under 18 whose sole parent/guardian is themselves a qualifying person OR who have a disability in circumstances where it is unreasonable to expect parental assistance, with documented risk of harm. Section 7B prescribes the application process to a statutory Director. Section 7C confers a right of appeal against refusal. Section 7D specifies the personal advocate's statutory functions: assist with disability assessments under the Disability Act 2005, apply for and obtain social services on behalf of the qualifying person, pursue rights of review and appeal where social services have been refused or inadequately provided, and train and support the beneficiary and their family/carers. Sections 7E-7F deal with reporting, governance, resources and the Director's annual report. The provisions have NEVER been commenced. The Inclusion Ireland 'number one ask' on 20 May 2026 is that section 5 of the 2007 Act be commenced via a commencement order under section 1(2) of that Act, that the language be updated to UNCRPD social-model framing, and that the child-eligibility test in section 7A(3)(b) be made unqualified - i.e. so that any child with a disability is a qualifying person on the basis of their own status rather than the parental-incapacity test.

If breached: No direct judicial remedy for non-commencement (a discretionary statutory power vested in the Minister). Operational consequence: continued absence of any statutory right of access to a representative advocate for children with disabilities, with cascading effects on enforcement of the Disability Act 2005 AON pathway, the Education for Persons with Special Educational Needs Act 2004, the Child Care Act 1991, and the Mental Health Act 2001.

Article 7(1): 'States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children.' Article 7(2): 'In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration.' Article 7(3): 'States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right.' Article 7(3) is the operative provision for representative advocacy: the State must ensure that children with disabilities can express views and receive disability- and age-appropriate assistance to do so. A child without access to representative advocacy cannot exercise the right Article 7(3) confers. Ireland ratified the UNCRPD on 20 March 2018; Article 7 has been operative against Ireland since that date.

If breached: UN CRPD Committee findings against Ireland on the State's periodic-report cycle (next reviewable stage: response to the LOIPR symbol CRPD/C/IRL/QPR/2-3 once published). Use as interpretive aid by Irish courts under the Constitution and the Equal Status Acts. Recommendations from the National Disability Authority and IHREC.

Article 12(2): 'States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.' Article 12(3): 'States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.' Article 12(4): States Parties shall ensure safeguards to prevent abuse, respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored, apply for the shortest time possible, and are subject to regular review. General Comment No. 1 (2014), adopted by the CRPD Committee at its 11th session, sets out the binding interpretation of Article 12: substituted-decision-making regimes must be replaced by supported-decision-making regimes that respect the will and preferences of the person. Inclusion Ireland's July 2025 submission specifically frames the representative-advocacy ask under Article 12: 'Establishing a national advocacy service would help address this gap and restore trust, while giving effect to children's rights under Article 12 of the UNCRPD.'

If breached: Same as Article 7. General Comment No. 1 has been cited in Irish High Court and Supreme Court judgments interpreting the Assisted Decision-Making (Capacity) Act 2015 and the Disability Act 2005.

General Comment No. 7 sets out the binding interpretation of UNCRPD Articles 4(3) and 33(3): States Parties must closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations (DPOs) in the development and implementation of legislation and policies. The General Comment is the direct anchor for the witnesses' 20 May 2026 framing that any representative-advocacy task force must be designed with DPO involvement embedded structurally, not consulted in once and then frozen out. The National Human Rights Strategy 2025-2030 explicitly invokes this framework (p.18): 'A Delivery and Monitoring Committee will be established with representation from Disabled Persons' Organisations and other disability stakeholders' - but the Strategy as published has no representative-advocacy commitment for DPOs to monitor.

If breached: UN CRPD Committee findings; reputational and procedural objections raised by DPOs in domestic and international forums; risk to Ireland's standing in EU and UN disability-rights forums.

The 2018 LOIPR adopted by the CRPD Committee for Ireland's initial State Report is the principal pre-review instrument identifying issues the State must address. Items 7 (children with disabilities) and 12 (legal capacity / equal recognition before the law) within that LOIPR set the baseline of the State's obligation to report on advocacy and rights-enforcement mechanisms for children with disabilities. As of 2026-06-02 the 2018 LOIPR remains the most-recent UN-level instrument addressing Ireland on these questions; no concluding observations have been published, and the next LOIPR (CRPD/C/IRL/QPR/2-3) has been assigned a symbol number but no published text. The 2018 LOIPR therefore stands as the live anchor for any submission citing UN-level obligations on representative advocacy for children with disabilities.

If breached: Ongoing CRPD Committee scrutiny in the periodic-review cycle; flagged in DPO shadow reports filed during pre-sessional working groups.

Article 12 UNCRC: 'States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child... For this purpose, the child shall in particular be provided the opportunity to be heard in any judicial and administrative proceedings affecting the child, either directly, or through a representative or an appropriate body...' UNCRC Article 12 is the standing right-of-the-child basis for an advocacy mechanism that ensures the child's views are heard in administrative and judicial proceedings. Ireland ratified the UNCRC on 28 September 1992. The EPIC 2023 report's Conclusion expressly invokes both Conventions: 'Responsibility ultimately lies with the Government and the appropriate statutory agencies to fulfil their obligations under the UN Conventions on the Rights of the Child, and on the Rights of People with Disabilities, respectively.'

If breached: UN Committee on the Rights of the Child findings in periodic review of Ireland; domestic-court use as interpretive aid; Ombudsman for Children investigations.

Sections 7-13 of the Disability Act 2005 confer a statutory right to an Assessment of Need (AON) within six months and a Service Statement based on the AON. The Act creates no advocacy entitlement. The witnesses' argument on 20 May 2026 is that the AON architecture is unenforceable in practice for children whose families have no independent advocate able to navigate the application, refusal, appeal and judicial-review pathways. Linkage to representative advocacy: section 7D(a) of the Comhairle Act 2000 (as inserted by section 5 of the CIA 2007, not commenced) specifically empowers a personal advocate to 'assist a qualifying person in connection with the application for and the obtaining of services for which the qualifying person is eligible' and to 'assist in the carrying out of assessments under the Disability Act 2005'. Commencing section 5 is therefore the direct statutory complement to giving Disability Act 2005 AON rights real-world enforceability for children with disabilities.

If breached: Judicial review (the 2025 High Court ruling that the HSE's previous AON methodology was unlawful is the principal recent example, recorded in detail in the autism-assessment-protocol case study); Disability Appeals Officer findings; Ombudsman complaints.

Section 4 of the Equal Status Acts imposes a duty to provide reasonable accommodation in the provision of services. The duty is engaged at every stage of the AON / CDNT / CAMHS / Tusla pathway for children with disabilities. The absence of an independent representative advocate is one of the principal reasons families do not pursue Workplace Relations Commission / IHREC complaints under the Acts: the procedural complexity exceeds what a family in crisis can navigate without assistance. Commencing section 5 of the CIA 2007 would interlock with the Equal Status Acts by giving the qualifying person's advocate a statutory remit to 'pursue rights of review and appeal'.

If breached: Workplace Relations Commission complaints; IHREC investigations; compensation orders.

The Strategy commits the State to a Programme Plan of Action every two years setting out how priority actions under each commitment will be delivered, by whom, the timeframe for delivery, and relevant KPIs (Executive Summary, p.17). Democratic oversight is by the Cabinet Committee on Disability, supported by the Senior Officials Group and the Disability Unit in the Department of the Taoiseach. The Joint Oireachtas Committee on Disability Matters functions as part of the broader political and democratic oversight of progress. A Delivery and Monitoring Committee with DPO representation is to be established (p.18). The Strategy is not a statute but is a published Government strategy committing named Departments and bodies to deliver against named Commitments. The witnesses' 20 May 2026 ask is that the Second Programme Plan of Actions (2027-2028) include a representative-advocacy task force with a specific KPI on commencement of section 5 of the CIA 2007 and the publication of any necessary amending legislation.

If breached: JCDM scrutiny; IHREC monitoring under its UNCRPD Independent Monitoring Mechanism role; DPO shadow reporting; political-accountability cost in advance of the next general election.

Ms Derval McDonagh, Chief Executive Officer of Inclusion Ireland, addressed the JCDM on 20 May 2026. Her substantive case framed representative advocacy as one component in an ecosystem of integrated supports for children and families - not as a stand-alone fix. The framing distinguishes the witnesses' position from any reading in which a Personal Advocacy Service would be expected to compensate for the absence of therapy supply, AON timeliness or school inclusion. McDonagh's 'Holy Grail' formulation is the most-cited single phrase from the Inclusion Ireland opening statement and the principal anchor for the integrated-supports framing of the ask.

Mr Gáibhin McGranaghan articulated the most concrete legislative ask in the 20 May 2026 session, in response to Senator Laura Harmon's 'number one ask' question. The ask is the commencement of section 5 of the Citizens Information Act 2007, updated to UNCRPD social-model language, with child eligibility under section 7A(3)(b) of the Comhairle Act 2000 made unqualified. McGranaghan separately presented the survey data backing the demand-side case for the service: 78% of families do not believe Government listens to them (rising to over 90% on Budget-specific decisions); 80% of families believe attitudes in Irish society are a barrier; 93% of families believe Government does not listen on Budget decisions. The numeric anchor for the survey data is Inclusion Ireland's June 2025 surveys, published in the July 2025 Pre-Budget Submission '1,000 Voices, One Message: Invest in Our Rights in 2026'.

Mr Wayne Stanley addressed the JCDM on 20 May 2026 on behalf of EPIC, Empowering People in Care. EPIC's substantive case has three load-bearing strands. (1) Every child in care should have a statutory right to an independent advocate, with priority for children with disabilities in residential care and children with communication needs. (2) The 'walking into a wall' framing of the structural risk: advocacy must be a mechanism for surfacing systemic need back to the system, not a hand-holding service for families navigating broken services. (3) The 'pull their heart out of their chest' framing of the political-economy risk: when only the most extreme cases generate media attention and policy movement, the system has structurally failed the cohort that does not surface. Stanley also tabled the EPIC waiting list: over 100 young people waiting to get EPIC advocates as of the day of the hearing. The 2023 EPIC report 'Headphones, Odd Shoes & A Second Chance at Life' is the qualitative-research foundation for these positions.

Ms Róisín Webb, Research and Policy Manager at EPIC, presented the operational detail behind the EPIC ask. The substantive points include the priority claim that children with communication needs (including non-speaking children, children using augmentative and alternative communication, and children with intellectual disabilities communicating in non-standard ways) should have first-priority access to a statutory representative advocate, because they are the cohort least able to articulate their needs through any channel other than a trained advocate. Webb's framing aligns with the cross-witness convergence that representative advocacy is at root a Convention-rights-realisation mechanism - Article 7(3) UNCRPD's right to age- and disability-appropriate assistance to express views - rather than a service-pathway facilitation mechanism.

Dr Clíona de Bhailís presented the empirical evidence base from the CDLP / Inclusion Ireland research (Burns, de Bhailís, Flynn - 26 February 2025). Her opening statement carried the substantive finding that there is a clear gap in the provision of representative advocacy for children with intellectual disabilities in Ireland; that the key informants interviewed strongly supported the establishment of a children's advocacy service; and that the service should be human-rights-based and child-focused or child-led. De Bhailís also captured the design risk parents had articulated: families saw the potential benefit of a representative advocacy service but were concerned about or reluctant to recommend the establishment of what could become 'yet another intermediary agency' or another round of paperwork and waiting lists. This is the principal design-risk caveat in the entire case-for-the-service evidence base and the most direct rebuttal of any commencement plan that creates a new agency in place of operationalising the existing CIA 2007 architecture.

Deputy Liam Quaide TD set the substantive framing of the 20 May 2026 session in the first member question. His point: the structural risk that an advocacy service becomes a 'second shadow system' compensating for systemic failures rather than enforcing rights. Quaide quantified the failure pattern through CAMHS-Intellectual Disability funding figures drawn from his own parliamentary-question batch (43% of HSE model funded, 38% resourced, 10 of 16 teams operational, no team in Cavan-Monaghan, additional 160 clinical posts required). The CAMHS-ID data is corroborated by Cianan Brennan's Irish Examiner article of 13 April 2026 reporting the same HSE replies. Quaide's policy framing closed: 'they are being failed twice - by the absence of proper services, and by a system that cannot properly even recognise their needs.' Quaide is a former practising clinical psychologist (per his Oireachtas member record); the JCDM transcript front-matter describes him as 'a former practising psychiatrist', which appears to be an in-room imprecision against the canonical Oireachtas record.

Senator Laura Harmon posed the 'number one ask' question that elicited the most concrete legislative anchor in the session - Mr McGranaghan's call to commence section 5 of the Citizens Information Act 2007. Harmon's framing connected workforce planning, caseload ratios and regional disparity to the legislative anchor, asking how a representative-advocacy service would be staffed and distributed if commenced. Her substantive ask reinforced the structural-equity dimension of the debate: a CIA 2007 commencement that fails to address regional disparity in CDNT and CAMHS-ID provision would replicate the geographic inequities the existing services already display.

Deputy Keira Keogh posed the question 'highlight to whom, exactly?' on the operational mechanism by which an advocacy service would convert individual case experience into systemic accountability. Keogh's question went substantially unanswered in the session - none of the witnesses had a clear architectural answer to the highlighting mechanism. Keogh also asked what an advocate could actually do for a 3-6-year-old going into residential care in a system that had already failed them, and whether the service should sit inside the National Advocacy Service / Citizens Information Board structure. The latter question pre-figures the institutional-design choice that any commencement of section 5 of the CIA 2007 would have to make explicit: the Personal Advocacy Service is administered by the Director under the Citizens Information Board, which is the existing parent statutory body for NAS.

Senator Tom Clonan posed the structural question 'is this not just a social worker's job already?' on the professional profile of a representative advocate and the boundary between advocacy and statutory social work. Clonan's question is load-bearing because it surfaces the principal Government-side argument against commencing section 5 of the CIA 2007: that the personal-advocate function described in section 7D of the Comhairle Act 2000 (as inserted) overlaps with the statutory functions of social workers under Tusla and the HSE. The witnesses' implicit answer is that statutory social workers are agents of the State whose loyalty is to the employing body; an independent representative advocate is an agent of the child whose loyalty is to the child. The structural distinction is what section 7D's specific empowerment to 'pursue rights of review and appeal' makes operational.

Deputy Ruairí Ó Murchú asked about the HSE-Tusla joint protocol for inter-agency collaboration on children with disabilities, and where it falls down operationally. The question maps directly to the EPIC 2023 report's first and last Next-Steps recommendations on strengthening ethical data collection and oversight monitoring under the HSE-Tusla Joint Protocol. Ó Murchú is the Sinn Féin spokesperson on disability and had previously received HSE data on CAMHS-ID staffing showing 25% of recommended levels (reported by Niamh Griffin, Irish Examiner, 28 October 2025) - an earlier data release than Quaide's 38-43% figures from April 2026. The Sinn Féin party line on the AON / advocacy nexus is consistently structural rather than procedural.

Senator Margaret Murphy O'Mahony asked which international model the witnesses favoured (United Kingdom, Canada, Australia), how a representative advocacy service would avoid duplication with NAS, Inclusion Ireland and EPIC, how it would reduce the burden on parents who have been de facto advocates since birth, and what safeguards would stop it becoming another bureaucratic layer. Dr de Bhailís's response named the Canadian children's-advocate-representative model as the most structurally analogous to a CIA 2007 commencement; Mr Stanley invoked the Scottish Independent Care Review framework. The duplication question is operationally answered by the existing CIA 2007 architecture: section 5 designates the Citizens Information Board as the parent body and the Director as the statutory officer, locating the service inside the existing CIB / NAS family rather than creating a new agency.

Deputy Martin Daly TD recounted an anecdotal pattern of HSE budgets being directed to inappropriate placements (cited in the session as approximately EUR 750,000 per year, with repeated head-injury admissions consequent on placement-mismatch) while the same families self-funded extensions to their homes to provide care directly. Daly's pattern is consistent with the Indecon (December 2021) finding that disabled-children households face additional costs exceeding EUR 14,000 annually and with the Inclusion Ireland survey finding that 24% of families could not afford to pay for any private services at all. The structural significance is that the absence of an independent advocate able to challenge inappropriate placement decisions in real time underwrites the dual cost: the public-funds cost of the inappropriate placement, plus the household cost of the parallel self-funded provision.

Senator Maria Byrne asked the witnesses about European best practice on representative advocacy for children with disabilities, and about the adult nursing-home placement of non-verbal young adults - whether advocacy is the appropriate intervention for that cohort. The young-adult nursing-home placement question maps to the National Disability Authority's published critiques of inappropriate institutional placement of non-elderly disabled adults; the European-best-practice question maps to UN CRPD General Comment No. 7's framework for the participation of persons with disabilities through their representative organisations, which has been operationalised in different forms across EU member states.

The Inclusion Ireland June 2025 survey series captured the views of over 1,000 respondents across three cohorts (adults with intellectual disabilities; family members and supporters of adults; parents of children under 18). 78% of respondents do not believe Government listens to their voices on Budget decisions. 33.3% of families ranked advocacy / information / peer support as 'what good support looks like'. 56% of respondents did not have access to information in any of the areas listed for supporting their child (communication, fine motor skills, sensory needs, physical needs, wellbeing, strengths-based development). Verbatim from the submission: 'The access to information I have is through social media. But as it is mostly generic information available it's hard to know how to help my son in particular ways and situations. It's constant guesswork. And without the help and guidance of a professional or someone with more experience it can be very difficult.' (p.9) The survey series is the largest contemporary primary-source citizen-voice record on representative advocacy as a family-prioritised support.

EPIC's March 2023 report Headphones, Odd Shoes & A Second Chance at Life captured verbatim contributions from eight care-experienced children and young people with disabilities. Verbatim selection: 'I feel like there's always obstacles in the way but it's about speaking out and you know, getting it changed.' / 'There was really a long period of time where I wasn't listened to, so ever since then I've really learned how to speak up for myself in a very positive way.' / 'Growing up in care - you have a bit more resilience because people do talk bad about you for being in care anyway, and then they talk bad about you having a disability, you're just kind of unphased anymore, it's just another thing.' / 'The fight to get supports is like a never-ending challenge.' / 'Unfortunately, one thing I've learned from growing up in care with a disability, is never ring a Social Worker or any service ever, ever, ever. You write them emails or a letter because if you ask for something, they'll try to say you didn't ask for it.' This last quote is the most direct first-person evidence in the public record of why an independent representative advocate - bound by no employing-State loyalty - is structurally necessary for children navigating compounded care-plus-disability systems.