Tuesday, 6 July 2021
Ceisteanna - Questions (Resumed) - Ceisteanna ar Sonraíodh Uain Dóibh - Priority Questions
I propose to take Questions Nos. 54 and 56 together. I recently announced my intention to establish a working group to develop an autism innovation strategy. I made the announcement at the AsIAm "What Autism Acceptance Means to Me" online event, celebrating World Autism Day. My intention is to launch the strategy in January 2022.
The Department of Children, Equality, Disability, Integration and Youth currently co-ordinates the national disability inclusion strategy and the comprehensive employment strategy for people with disabilities. Complementing these two major frameworks, the aim of the autism innovation strategy is to address the specific barriers that may be faced by individuals with autism and their families. The focus of the strategy in the short term will be to deliver real and tangible solutions to the challenges, needs and experiences of people with autism.
As an initial step, I intend to set up an autism innovation strategy working group. This group will develop and subsequently monitor the implementation of the strategy. I will personally chair the working group, once established. The intention is that the working group is to be formed in September of this year. It will be made up of officials from relevant Departments and agencies, as well as public stakeholders. The tasks of the working group will include pinpointing priorities within areas of education, employment, health and housing that the strategy will aim to address; working collaboratively to identify actions which support the effective implementation of the plan; and ensuring that the lived experience of people with autism is part of the design, implementation and monitoring of the strategy. The working group will also provide oversight and critical, constructive analysis that will help the autism innovation strategy achieve its goals. The strategy will be cross-departmental in nature, as autism is not solely an issue to be addressed with health supports, but one which requires a more holistic and rights-based approach to be taken, reflecting the entirety of a person's lived experience.
I appreciate the Minister of State's response. I have posed the question as a public representative and also as a parent of a child with special needs and a diagnosis of autism. Therefore, it is a matter that I will be following very closely. It is most important that there is an urgent commitment to undertake the development needed to recognise the diverse needs that people with autism have and attempt to level the playing field of access to services for those with autism.
There are major gaps in the current continuum of provision, of which I am sure the Minister of State is aware. I wish to mention a few of them, briefly. As diagnostic rates have increased, waiting lists for assessments and follow-up services continue to rise, with some families waiting 18 or 19 months for an assessment of need and, very often, between 30 and 36 months for full access to essential intervention. That amounts to a three-year wait. That is three essential years of formative and developmental growth that are stalled due to an inexcusable lack of resources.
In response to the Deputy's additional questions, as she is aware, the progressing disability services, PDS, for children and young people model is being rolled out. The problem the Deputy described in respect of people falling off a cliff when they reach certain ages as they go through the process has now been stalled. No longer will a child age out of services, particularly in the transition from the early years to the school age teams. Second, we are carrying out a comprehensive and ongoing review of waiting lists. There are primary care, disability and school inclusion waiting lists. I am trying to address the issues with waiting lists to ensure that people and family members know exactly which list they are on. With that, I hope we will also see a reduction in waiting times.
I wonder whether there is an opportunity for parents to join the working group to which the Minister of State referred. Perhaps she will consider that.
I highlight as a cause of concern the lack of opportunities to collate CSO data on the number of people with autism in the population. Let us be realistic, however. The lack of disaggregated data is not what is preventing a more concerted effort to provide equal access to services. There is a legal onus on the Irish Government to compile comprehensive disaggregated data under Article 31 of the UN Convention on the Rights of Persons with Disabilities. I am highlighting the issue to the Minister of State to hopefully spur further action on the part of the Government to follow the example of other countries such as Denmark, Hungary, the UK and Malta. These countries are setting a standard of international best practice and their governments have played a central role in the formation and implementation of a national autism strategy, much to be benefit of those with ASD.
I am aware that the Minister for Children, Equality, Disability, Integration and Youth has initiated a review of the Equality Acts, but it is a slightly redundant development as the Acts have not been fully commenced.
The autism innovation strategy will be cross-departmental in nature, as autism is not solely an issue to be addressed by health supports, as I stated. In order to ensure that we find the best possible independent individuals and organisations to participate in the working group, I will launch a public expression of interest process over the summer. Key criteria for the working group members will include knowledge, lived experience and expertise in autism, particularly in the areas of education, employment, health and housing.
In answer to the Deputy's question, applications to join the working group will be open to parents and advocacy groups. We will all be working together. We aspire to be like countries such as Malta.