Pauline Tully (Cavan-Monaghan, Sinn Fein) | Oireachtas source

Urgent action is needed from Government on disability services to ensure the rights of children and adults are upheld in line with the UN Convention on the Rights of Persons with Disabilities. This is the key message that comes from this report. The report is called Aligning Disability Services with the United Nations Convention on the Rights of Persons with Disabilities. It is the conclusion of the Joint Committee on Disability Matters after hearing from individuals with a lived experience of disability, those caring for children with disabilities, those caring for children with autism, disabled persons’ representative organisations and disability service providers. The committee also heard from and probed the present Minister of State, who has responsibility for disability, the Department of Health, HSE officials and the Department of Children, Equality, Disability, Integration and Youth. The report contains 38 priority recommendations across a range of areas. It includes rights-based disability service provision, community-based health services and support, children’s disability services and future innovation.

Ireland signed the UNCRPD in 2007. We ratified it in 2018. We were the last EU member state to do so. The articles contained in the UNCRPD are binding on those state parties that have ratified the convention, which means Ireland has made a commitment to protect and promote the rights of disabled people. In reality, this is not the case and this is reflected in this report. The report finds policies and legislation that would enable progress to a social and rights-based model of disability and care continue to be delayed. For instance, and possibly most importantly, the Government has not yet ratified the optional protocol of the UNCRPD. The optional protocol would enable individuals or groups of individuals or third parties to submit a complaint to the UNCRPD committee if they believe their rights under the convention have been violated. Complaints can only be made against a state party that has ratified the optional protocol, so it must be ratified without further delay.

The report also calls on the Government to review the Disability Act 2005. That Act says Departments and public bodies must work to improve the quality of life for people with disabilities. The Act, when initially introduced, aimed to significantly advance the position of persons with a disability in Irish society. However, the centre for disability law and policy noted the Act’s subsequent application in the context of assessments of need and accessibility of public services has highlighted that it does not meet this aim due to the Act’s focus on assessing needs rather that a right to be included in the community and access to support, which undermines Ireland’s commitment to disability rights under the UNCRPD. The Government needs to review the Disability Act to ensure it is aligned with the UNCRPD; it is outdated. This could and should have been done in conjunction with the review of the Education for Persons with Special Educational Needs, EPSEN, Act, which is currently happening. The two Acts were designed to run in tandem and it is a missed opportunity not to have looked at them in conjunction, especially the part of the Act that deals with children.

The report finds that in general the public is not aware of the issues people and children with disabilities face in the health service. It points to the lack of a national disability awareness strategy to raise awareness of these issues and stresses that because of the inequity in service provision, parents and individuals with disabilities are having to impact their own privacy and dignity through engaging with the media to raise awareness and access services. It is also occurring through parental action in a range of court cases taken against the HSE, again to access services. The report emphasises the need for:

a wider person-centred support plan for community inclusion to target the development of community-living infrastructure, care and support, including respite and support for agencies to re-configure their services, along with renewed and strengthened commitment to people with disabilities under the integration of SláinteCare.

It continues that “Otherwise, the State will be locked in health services that are medicalised and segregated and impact people with disabilities rights”.

An area I consider crucial is the delivery of children’s disability services. This report informs us once again that the progressing disability services model for delivering children’s disability services is failing in this task. It points out it is not achieving early interventions as standard for children with complex disabilities and it conveys the message that parents are distressed as they see the negative impact of the lack of intervention compounded by the routine disruption caused by non-standard delivery of service across the children’s disability network teams and stresses that the progressing disability services model “must be urgently developed to fully align with the UNCRPD”.

Last of all, the committee’s report also highlights the findings and recommendations of the Disability Capacity Review to 2032. That review reported on the scale and range of the capacity required to meet the requirements for disability support services between now and 2032, and this review indicates the State’s spending on disability services will have to increase by up to half over the next ten years. It is disappointing, therefore, to see the recent budget come nowhere near the funding that is required to start to deal with this.

Deputy Murnane O’Connor referred to a meeting we had yesterday on a number of issues. One which came up was making our Parliament autism-friendly, which is an ongoing issue, but we also need to make our Parliament accessible, and one of the things was getting a changing places toilet put into Leinster House. Another would be changes to the audiovisual room. If we have speakers who are wheelchair users, they cannot get behind the desk or it is very difficult for them to do so. I have raised that issue before, as has the committee. I am conscious we have an old building and it is difficult, and even this Chamber would be difficult to make fully accessible, but there are things that could be done.

I also attended the end of the NDA annual conference today. There was person addressing us virtually from Scotland to speak about how in Britain there is a fund to support election candidates with a disability. I had heard about this before. It is only for the extra costs, so candidates cannot use it for their election material or anything like that. It is for the extra costs associated with disability and it would be brilliant if something like that could be considered for here as well. It was also raised in the committee meeting yesterday.

Before I finish, I commend my colleagues on the committee and the staff who worked so diligently on putting the report together. Most importantly, I praise the people with lived experience who engaged with the committee, because without the unfiltered lived experience of the disabled community, this report would not carry the weight it does. I urge the Government to accept this report and to start to deal with the issues within it.

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