Mr. Bernard O'Regan:

I thank the Chairman and members for the invitation to attend to discuss services and supports for autistic children and adults. The HSE is responsible for developing, providing and funding health and social care services for autistic children and adults. It does this in the context of legislation, national policy, the UN convention and other international conventions, and the funding provided by the State.

The HSE established the service improvement board for the autistic community to oversee the implementation of the recommendations of the review of the Irish health services for individuals with autism spectrum disorder, which was completed in November 2017. The board consists of senior operational and clinical decision-makers, independent professional and academic support and, importantly, representation of persons with lived experience of autism, participating as equal members of this important collaborative team effort. This is reflected in the membership of each of the two working groups. Its work will shape how services can be delivered to autistic people and create greater awareness of autism to promote inclusion and fostering positive attitudes. The agreed set of priorities are to implement a programme of awareness-raising and engagement with the public, and to build professional capacity and competence among key professionals working with autistic people, including the implementation of a tiered model of assessment.

As regards the awareness working group, information available to the autistic community, family members and service providers was limited and inconsistent and did not always reflect current understanding and approaches. The HSE has taken a comprehensive approach to addressing this and is reviewing existing content, seeking the views of all stakeholders on said content, reviewing what is available in other jurisdictions and working to ensure it can be made accessible online and in print. This quality process has been progressing and will continue into next year. The awareness stream of the programme is designed to respond to the call for greater clarity in respect of autism and the supports available to autistic people, looking at the availability of comprehensive, accessible information for autistic people, families and staff and the public, and supporting AsIAm to provide a national phone line to provide the autistic community with access to useful information. It involves the development of an online information and knowledge hub combined with a helpline aimed at providing contemporary information in respect of services, resources and signposting to other essential community and statutory-based supports and services.

The assessment and pathways working group aims to develop a standardised assessment approach for use in all services dealing with the assessment of those with autism to ensure that every assessment is of an agreed standard. It also seeks to agree a standardised service journey and the implementation of a consistent core service offering across those providing services to people with autism. The working group has consulted widely with key stakeholders in the development of the project and this was particularly important in the context of the implementation of a tiered approach to assessment. Its main focus is to develop an operational model for a tiered approach to autism assessment through developing clear and functioning pathways to services. This will contribute to the national clinical programme for people with disability, NCPPD, producing a model of service, including initial and ongoing assessment. There will be an implementation plan to include training which takes cognisance of existing policies of the HSE, along with the development of processes or supporting protocols. The draft protocol is currently being piloted in two community healthcare organisations and its next phase will bring that up to four community healthcare organisations, CHOs. By way of update, a third CHO has now committed to piloting it and we are engaging with the fourth CHO at the moment.

As regards services to children and families, the HSE is committed to providing high-quality health and social care services to all service users, including those with disabilities and their families. The HSE fully accepts that there are significant challenges in current service provision, the level of unmet need and engagement and communications with service users and families. The HSE, in collaboration with Department officials, is working to develop an overarching roadmap to progress the next phase of implementation of Progressing Disability Services for Children and Young People. The document will broadly address the key areas of: communications and engagement with families and service users; activity data and their collation and sharing pending the roll-out of the new integrated management system for the teams; workforce planning to support increased recruitment of required skilled staff; family-centred practice and supports to teams as they transition to an interdisciplinary and family-centred model of service; education sector engagement, including the establishment of local education and health forums in all CHO areas; a process for review of the implementation of the progressing disability service, PDS, model; and assessments of need, AON, and the challenges presented by the legislative requirements of Part 2 of the Disability Act 2005, including HSE proposals to address the ongoing requirements for assessments of need and associated waiting lists. The document will include prioritisation, timelines and dependencies.

The HSE has developed a waiting list initiative to address the AON waiting list, in addition to a commitment put in place earlier this year to provide 1,000 assessments for autistic children.

The HSE's children’s disability services have been reorganised under the progressing disability services, PDS, programme. The aim at the heart of PDS is to achieve fair access to services for all children with disabilities, based on need. Making that happen is one of the most complex change programmes undertaken within our health and social service, and while we have made progress, we have a lot more to do before it is complete. Services are moving from being professionally-centred to being family- and person-centred. When services are family and person centred the team of professionals and the family are equal partners, co-designing services to meet individual needs. The family brings knowledge of their child and the team brings its expertise. Together they agree on goals and how they will be achieved.

The HSE is facing some specific challenges in children’s services, including a high level of staff vacancies on our children’s disability network teams, CDNTs, a limited employment market and meeting the concerns and needs of children and families. We also need to strengthen adult disability services. Waiting lists and caseloads are a challenge and we must ensure we can prioritise children or adults by their need for specialist or more routine services. It is not acceptable for an individual to have to wait an extended time for either an assessment of their needs, or for supports and therapies needed by people with autism. We recognise that difficulties accessing services create additional stress for families. Our programme of reform is intended to ensure that children have timely access to services based on need. The HSE regrets the negative experience of individuals and families where the current service may fall short of what is needed to meet their needs. We are fully committed to addressing these problems and always welcome suggestions about improving our approach to doing so. This concludes my opening statement and together with my colleagues we will endeavour to answer any questions members may have.