Shortcomings in services for people with autism laid bare before Oireachtas committee
Adam Harris, founder and chief executive of AsIAm, Ireland’s national autism charity, said barriers to people with autism and their families 'means families losing the opportunity to participate fully in the community and it also often leads to poverty and to social exclusion'. Picture: Denis Minihane
People with autism can fall between various stools when it comes to the services they need, with different Government departments and State bodies sometimes failing to take responsibility, an Oireachtas committee has heard.
The joint committee on disability matters was discussing aligning disability services with 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.
Various speakers highlighted ongoing problems with lack of services and how those services can be accessed.
Adam Harris, founder and chief executive of AsIAm, Ireland’s national autism charity, said barriers to people with autism and their families "means families losing the opportunity to participate fully in the community and it also often leads to poverty and to social exclusion".
He told the committee that while the transfer of disability policy to the Department of Children offered hope for a more coherent approach to providing services, many people required services through primary care, disability services and mental health, and there was "a lack of accountability [between departments and agencies] so a lot of people fall between those stools".
Jean Mullan, a director of Forum Connemara CLG, a local community development company, a member of Galway Disability Forum and the chair of Lámh Linn, said rural communities faced additional challenges, alongside issues such as a lack of services, a high turnover of professionals, long waiting times and a lack of supports, such as childcare and respite.
"Although all people with disabilities share similar difficulties in accessing appropriate living facilities, healthcare and other support services, people living in rural areas far from Dublin, face the added challenge of travelling long distances in order to access the services and support they need," she said.
Ms Mullan listed a number of examples, including how a widowed mother of two boys aged 13 and 14 both attending the same school puts her 14-year-old on the school bus every morning but because there is no escort available, she has to drive her 13-year-old, who has autism, to and from school daily.
Campaigner Gillian Kearns highlighted the problems facing adults seeking a diagnosis of autism, such as there being no public post-diagnostic support and the expense of having to seek a private diagnosis in the first place. She added that some therapies offered to autistic people in Ireland were themselves problematic.
Another addressing the committee, Tom McLoughlin, said the educational service up to age 18-19, "while far from perfect, involves some degree of uniformity in terms of structure, content and also delivery of a service", whereas "the adult services by contrast is vague and undetermined" and "managing the chosen service is a lifelong chore".
He described a "multiplicity of external agencies in the adult services", including the HSE and schools and problems with resourcing, including staffing.
"The starting prerequisite is to plan a coherent service," he said.
Another advocate, David Doyle, father to a 28-year-old woman with a diagnosis of ASD, moderate learning disability and complex mental health issues, said he would "strongly recommend to the committee that consideration be given to transferring the HSE disability unit, including its budget allocation, disability staff and accommodation to a specialised department for disability within the Department of Health. The responsibility then would lie with the minister for disabilities."
He said: "My personal view is that HSE is not a right fit for disabilities. The lack of respite care, increasing waiting lists for interventions, the lack of planning for day services, residential services, respite services and multi-D services, together with the lack of planning on specified areas, such as autism, all support my view that the HSE is not a right fit for disabilities."
