Ms ?ine Lawlor:

I am here with Ms Maria Gleeson-Cary on behalf of the Irish Association of Speech and Language Therapists, the recognised professional association of speech and language therapists in Ireland. We thank members for this opportunity to speak with the committee today.

The IASLT is a committed advocate for people with communication and feeding support needs. Speech and language therapists work with autistic people across a range of settings ensuring that their rights under the UN Convention on the Rights for People with Disabilities are promoted and protected in order that all people with a disability, including autistic children, young people and adults, get the support they need to thrive and to live happy and full lives. The IASLT welcomes the recent publication of the committees report on aligning disability services with the UNCRPD and the references to the IASLT’s submission to the Joint Committee on Disability where we raised a number of issues, some of which are reflected in today's submission.

We strongly advocate for the use of a neurodiversity-affirmative paradigm as the overarching prism through which disability, particularly autism in the context of today's submission, is viewed, discussed and supported. We recognise there are lots of different and valid ways of experiencing the world and that there is great strength and power in a neurodiverse human population. The neurodiversity paradigm affirms that all neurotypes have unique strengths and needs that are deserving of consideration and respect, with support needs varying from person to person. As a society, we must value people for who they are and work towards the full inclusion of people with disabilities. Communication is a fundamental human right that is central to human interaction and participation. Communication support is a crucial element in the implementation of many articles in the UNCRPD. As a society, we have a responsibility to ensure that all autistic people have access to appropriate communication supports to ensure they can access education, healthcare, employment and community activities. It is crucial to recognise the diverse communication needs of autistic people and to provide appropriate accommodations to support autistic people to fully participate in all aspects of society.

The IASLT advocates for the development of speech and language therapy services outside of traditional health services and the outcomes from projects, such as therapy in schools, continue to highlight the benefits of and need for speech and language therapists in education and mental health services, as well as primary care and disability services. Speech and language therapists have a unique role in assessing and supporting the communication needs of autistic people and in understanding the broader communication barriers impacting autistic people in all aspects of Irish society. As health and social care professionals, we also work closely with parents, carers and other professionals.

One of the areas named in the UNCRPD is the support of augmentative and alternative communication, AAC. The term AAC is often used to refer to high-tech speech generating devices but its true meaning is more expansive. An AAC system can include things like gesture or sign; paper-based tools, for example alphabet boards, phones or devices specifically designed for communication. As speech and language therapists, we advocate for the use of robust AAC communication systems. Many users of AAC require a total communication approach, which includes a combination of tools to support their communication across home, school and social situations. Robust AAC systems require tailoring to the individual and their communication needs, while allowing for their evolution over time. Autistic people in Ireland do not have equitable access to speech and language therapy supports or to funding pathways to help them access robust communication systems.

We acknowledge recruitment and retention are challenging for the health service at this time. There has been investment in posts, which is welcomed. The reconfiguration of children's disability services has resulted in increased challenges for staff working in this environment, which must be acknowledged, with speech and language therapists raising clinical concerns, an increase in complaints related to changes in work practices and a significant amount of clinicians' time and expertise being spent on non-clinical demands. In order to support both recruitment and retention of staff, the culture and issues of clinical governance need to be addressed in order that staff are practising in a safe environment and have appropriate support. Clinical governance frameworks should be developed and implemented consistently across the country to provide clinical assurance, accountability and allow for the development of service pathways, policies and clinical competency documents in relation to autism service provision.

The reorganisation of services under PDS has removed access for some and resulted in inequitable access to specialist services. Publication and implementation of promised policies to support PDS is imperative. In the absence of these documents and their implementation, there are inconsistencies and inequity in service provision for children and their families. This is impacting on the safe and effective provision of services and further creating challenging work environments for staff. The issue of pay and conditions for staff in the HSE and, in particular, section 39 organisations is also impacting on recruitment.

Access to timely identification and intervention for autistic children, young people and adults is vital to ensure their needs are understood and that they have access to appropriate support to ensure they lead a full life. Waiting times for speech and language therapy and other services are a critical issue. Addressing recruitment and retention issues in speech and language therapy is crucial and we advocate for a comprehensive workforce plan. Specialist pathways were to be established as part of the roll-out of PDS. Specific client-cohort-focused services or agencies had staff skilled in areas who could provide relevant supervision, support and training, but reconfiguration dismantled this structure. The promised specialist supports have not been consistently developed and, in some cases, there is no local access to specialist support for autistic people. New pathways to access specialist support are required. Clinical specialist speech and language therapy posts are required nationally, given the multiplicity of expertise required, for example, in swallowing or AAC, and with consideration of the complex presentations that require specialist support.

A national framework for prescribing and funding of communication devices is required. We need a system that allows rapid access, including a loan model, so people can quickly access and try out different devices to ensure they get the best system for their needs. Development of an assessment and intervention service for autistic adults who do not have an intellectual disability and currently do not have access to autistic support services is recommended. We also recommend training and support for education staff across primary, post-primary or vocational training and third-level institutions to ensure that reasonable accommodations of the individual’s requirements are provided. Support is also required to ensure that education is delivered in the most appropriate modes and means of communication for the individual and in environments that maximise academic and social development. We also require training for other health professionals, educators, public representatives, including people such as gardaí and judges, on neurodiversity concepts and the use of appropriate augmentative and alternative modes, means and formats of communication.

As a society, we have come a long way in the public awareness of autism. However, we must continue to foster collaboration across all sectors of society to promote and protect the human rights of people with a disability, including autistic people, within our society. We must ensure the services and supports we provide are accessible and are neurodiversity affirmative in their content. We must also address the gaps in services and supports. These gaps have been highlighted for children and their families who try to access intervention. Significant gaps also exist for adults, with services often ceasing when a young person turns 18.

The significance of the change required in respect of disability services is acknowledged. However, to rebuild trust with service users and clinicians, it is imperative there are appropriate targets and follow-through on promised actions and strategies. We look forward to working with Government parties to ensure the implementation of recommendations from the report on aligning disability services with the UNCRPD as we work towards improving services for people with a disability.