Published on 14 February 2023
Cathaoirleach and members of the Committee, thank you for the invitation to come here today, together with my colleague Ann-Marie O’Boyle, to discuss Autism Policy. I welcome the fact that we are attending this meeting with the Ombudsman for Children and the Chief Commissioner at the Irish Human Rights and Equality Commission.
I am profoundly aware of the fact that many of the issues I will mention today are faced by both children and adults alike, and their families. For this reason, we are committed to working in close cooperation with the Ombudsman for Children in relation to the matters under discussion. We are also committed to taking a human rights based approach to our work including our handling of individual complaints and I therefore welcome the inclusion of Irish Human Rights and Equality Commission in this discussion. I have no doubt that there will be a common thread between each of our experiences and remarks.
As Ombudsman, I consider complaints from users of our public services who believe they have been treated unfairly or suffered an injustice because of maladministration by a public service provider. In determining such complaints, we examine the decision from the perspectives of legality and compliance, as well as fairness and good administration.
In 2021, we received over 4,000 complaints, the highest on record in the 38 years the Office has been operating. Each one of these complaints was examined thoroughly in a fair, independent and impartial way.
The complaints cover a spectrum of services from housing, to the passport service, to social welfare schemes or our health services. For the purposes of our work, we only collect personal data relevant to the particular case. For this reason, we do not collate data on the socio-economic, health, ethnic or cultural status of complainants. This would include information about whether our complainants are living with a disability such as Autism.
For this reason we do not have comprehensive data on the number of complaints that we receive from any specific group in society. Instead, we collect information that is relevant to each individual case and the public service that is being complained about. Therefore, I do not have general information in relation the number of Autistic people accessing the services of my Office. However, our experience would indicate that we do not receive a large volume of complaints related to Autism services nor do we receive a large number of complaints that have indicated that having Autism was a factor in their complaint. Although these issues certainly do arise in individual complaints.
Each of the complaints we receive are important and tell a story that will not be a surprise to many of us. They demonstrate the challenges of receiving an assessment of need in the public health system and the unfair burden on families who are often forced to find ways of paying for a private assessment.
Some of the complaints we receive demonstrate how difficult it is for those living with an autism diagnosis to get access to the services they need. Sometimes this can be seen in complaints about lack of services in certain areas of the country or in other cases in complaints about disrupted or cancelled services due to lack of resources whether these relate to finance or staffing.
An issue that is also evident in some complaints to my Office is the issue of individuals transitioning from children’s services to adult services. In one particular case, a mother advocating on behalf of her adult son with autism wrote to my Office to underline the impact of the lack of day services for her son once he left school. She told us that her son’s mental health was deteriorating because he did not having access to a day service and was not getting the stimulation, he needs. This meant he could no longer go to the shops or travel on public transport. He has lost these skills and will continue to do so until the necessary supports are put in place. Another complainant told us that his adult son had no day service for two years after he left school and this meant that when a day service was sourced by the HSE, his son experienced high levels of anxiety about leaving the house and reengaging with the outside world. These are the real and lived impact of lack of services in the community. These examples highlight that there can be disparity in the level of provision between services for children and services for adults when it comes to services for autistic people. This is also reflected in the assessment process.
Some of the complaints we receive result from the lack of proactive communication from the HSE, or other public bodies, when such services are changed, disrupted or cancelled. I understand and acknowledge the considerable challenges faced by staff in the HSE, particularity frontline staff. However, I want to highlight the important impact that good communication and transparency can have in these situations and note the responsibility of public bodies to use a method, perhaps such as email and telephone that may be more accessible. It is also extremely important that complaints processes of the public service providers are accessible to autistic people and that there is an appropriate focus on individuals being involved in the complaints process.
We have also received a small number of complaints in relation to other areas such as access to higher education or social welfare benefits such as disability allowances. In some circumstances, individuals can be denied the opportunity to participate fully in the community and can also contribute to poverty and to social exclusion.
I am conscious of the need to adhere to the UNCRPD (The UN Convention on the Rights of Persons with Disabilities), which aims to ensure people with disabilities enjoy the same human rights as everyone else. In 2021, my Office published “Grounded” which looked at the issue of access to personal transport support for people living with a disability. One of the key findings of this report was that the Department of Finance, in establishing this Scheme, prescribed an overly restrictive definition of a disability. If as a Country, we are committed to the full implementation of the Convention, we must ensure an inclusive approach to ensuring all those living with a disability can participate equally and actively in their community and in work. This includes people living with Autism. I’m very disappointed with the lack of progress by the Government in relation to providing access to personal transport support for people living with a disability.
My Office also published Wasted Lives in 2021, which looked at individuals under 65 living in nursing homes and the appropriateness of such placements. This included individuals with a diagnosis of autism.
I would also like to briefly mention my role as Ombudsman in receiving complaints in relation to the Disability Act (2005). Under this Act, I have the power to investigate complaints about compliance by public bodies and others with Part 3 of the Act, which includes access to public buildings, services and information. People living with autism will experience varying levels of challenges and needs. However, this should never be a barrier to accessing information or services from public bodies. I would encourage anybody living with Autism, or any disability, to contact my Office if they have a complaint in relation to any of these issues.
As Committee members may be aware, I took up the role of Ombudsman in February 2022. I was mindful of the need to reach out, listen and engage directly with both individuals and representative groups on issues affecting our public services today. As part of this I held workshops in 2022 with groups effected by specific issues such as housing, which I think we can all agree is a critical issue nationally. I also met with groups representing people living with a disability, including those living with Autism. I plan to continue this outreach in 2023 in order to continuously inform myself and my colleagues. I believe that is through listening to each other and working together that we can deal with some of significant issues facing our public services today, in order to make them more inclusive for all.
I am pleased to be in a position to hear the contributions of both the Members of the Committee and my counterparts from the Office of the Ombudsman for Children and the Irish Human Rights and Equality Commission today. I am happy to take any questions that Members may have and I look forward to our discussion.