Holly Cairns (Cork South West, Social Democrats) | Oireachtas source

I welcome the Bill tabled by Deputy Ó Ríordáin and I thank the Labour Party for using its limited Private Members’ time to advance this legislation. The Social Democrats are strongly in favour of the Bill and its intended outcomes. Awareness of autism and neurodiversity more broadly has increased in recent years. Developmental needs of children are finally being recognised and diagnosis of adults illustrates how the condition has been so misunderstood for decades. Disgracefully, this wider awareness has not been matched by the provision of State services. Every week I am contacted by families who are deeply concerned about a child or family member with autism who cannot access the therapeutic interventions in educational supports to which they are entitled. The situation is equally challenging for adults who do not receive support to gain employment or live independent lives, or those having to navigate complex systems after a recent diagnosis. The Bill provides for the creation of a cross-departmental autism strategy and requires all relevant Ministers and public bodies to co-operate with its implementation. It also outlines the need for strong leadership, an awareness campaign and the training of State officials. The Bill outlines exactly the actions that Government should take. That it has to be put forward by an Opposition Party taken within Private Members’ time speaks volumes.

The Department of Health document estimating the prevalence of autism spectrum disorders in the population demonstrates that the actual number of people with autism in Ireland is unclear. Operational estimates put it at 1.5% of the population, which, according to the latest census data, equates to more than 76,000 people. That is close to the entire population of Galway city. The sheer scale of individuals and families affected demands a coherent and properly resourced State response. It is shocking that there is not a strategy for autism already in place. Unfortunately. even within Departments, policy is disparate and inconsistent.

The shameful lack of adequate school places for children and young people with autism is a result of poor planning. Since last September, I have worked with deeply upset and distressed parents seeking school places for this September. Some have secured places, in other cases children are being forced to travel for hours every day from west Cork to the city to access education. In some situations children are repeating a year in primary school not because of their individual needs but because the Department of Education is giving them no other alternative.

I am sure the Minister of State knows the size of the Cork South-West constituency. In that entire constituency there is not one special school. Parents have had to form a campaign group in an attempt to get one. If it could be possible, the situation in the area of healthcare is even worse. AsIAm’s report into autistic children’s access to healthcare last year reveals that two thirds of parents and guardians surveyed have had to wait two years or more to receive an autism diagnosis for their children. More than half felt very dissatisfied with the HSE support services for their autistic children. Almost four in five said they were not in receipt of any support either from early intervention or school-age going teams. Regrettably, this will come as no surprise. CDNTs continue to be disgracefully understaffed, for example the west-central Cork team is currently missing a speech and language therapist, 1.4 occupational therapists and a half-time physiotherapist while the Carrigaline-Kinsale-Bandon team is short 3.62 occupational therapists, two psychologists, one physiotherapist and 0.5 of a speech and language therapist.

The HSE continuously commits to recruiting and retaining staff but there is very little evidence of this. Clinicians and therapists are also deeply frustrated at not being able to provide the care they want as professionals. Moreover, the poor treatment of students and graduates is a disincentive for therapists to work here. Ultimately, it is children who are impacted, with their capacity to live full independent lives being eroded due to the absence of supports.

All of these examples and figures are indicative of the reality faced by autistic children and their families. It is clear their rights are being breached daily. A failure by the State to provide basic services forces all responsibilities and obligations onto already overstretched families. Families work and sacrifice to get private diagnoses, therapies and support. Many others do not have the option and must watch their child suffer and even deteriorate on public waiting lists.

Too often, autism is surrounded by stereotypes and misunderstandings. A strategy designed with representative groups and advocates is necessary to appreciate their needs. Figures from the National Disability Authority note approximately 50% of adults with ASD or autistic adults have a concurrent intellectual disability and many of them require lifelong services. Of the other 50%, some have very little need for supports but there is a significant cohort who are disabled by our education, employment and State systems. Unfortunately, the needs of this group are often not met. This situation, combined with the lack of data on autism in Ireland, underlines the need for a strategy. In this regard, the Bill also responds to current Government deficits by requiring public bodies to maintain data collection systems to identify and record the number of people in their client bases who have autism and to calculate current and future needs for services.

I highlight also necessary improvements that could be addressed on later Stages. Crucially, the Bill must have an implicit and binding obligation on the Minister to engage with people with autism, advocates and disabled persons' organisations, DPOs. Paternalistic and ableist cultures are hardwired into Government Departments and State bodies. It is highly probable that without such a clause, the strategy, awareness campaign and associated measures would be developed without any input from people with autism. The exclusionary process surrounding the rushed Assisted Decision-Making (Capacity) (Amendment) Bill is the latest example of this type of approach. I have no doubt Deputy Ó Ríordáin is open to that inclusion.

The Government likes to talk about a rights-based approach to autism but we actually have a budget-based approach. Services, therapies and classes are provided according to budgets, not needs. This is the most sickening part. We know and understand the need. The Government, the Departments of Health and Education and the HSE are all aware of it. There is an abundant and pressing need for an autism strategy that adequately and respectfully provides the full range of integrated services needed by both children and adults. Children with autism and their families are being failed every day. They have been denied proper educational opportunities in their localities. Assessments take years and therapeutic interventions are practically non-existent for many families. Adults with autism face particular challenges and barriers that are only beginning to be fully understood, not to mention resolved. We need a fully resourced strategy that recognises the complexities and diversity of issues and experience involved. Any delays or deferrals intentionally make the situation worse for individuals and families who are struggling. Children, families, adults and whole communities need this strategy as soon as possible.

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