"HSE are sending families to us," says founder of Infinity Friends Athlone
Two parents of autistic children from Athlone gave powerful testimonies before an Oireachtas Committee hearing last week on the challenges they have had to overcome in the search for equal access to vital services for their children.
The two, Claire Earley and Hilda Duignan, are the founders of a voluntary run social club for autistic children in the Athlone area called Infinity Friends. The group is an offshoot of Autism Parents Athlone which was established as a Facebook group by Claire Earley to highlight the lack of second-level school places for children with autism and which mounted a very high-profile and well organised campaign to have more school places provided in local secondary schools.
In the wake of the contribution made by the two Athlone mothers to the Joint Committee on Autism in the Seanád last week, Longford/Westmeath Senator, Michéal Carrigy, has now called for a complete review of the Disability Act and said there was unanimous agreement between all the stakeholders who address the Seanád that the Disability Act is “in need of reform.”
WATCH HILDA AND CLAIRE'S CONTRIBUTION HERE
Among the stakeholders who addressed the Joint Committee on Autism, which is chaired by Senator Carrigy, were members of the Psychological Society of Ireland, the Association of Occupational Therapists of Ireland along with a number of self-advocates and families advocating for autistic children and adults.
Referring to the “long waiting lists” for assessment of needs for those diagnosed with autism, Senator Carrigy said even when a diagnosis is finally made, “this only signals the start of a long, frustrating and often fruitless journey to accessing appropriate therapies” he said, adding that there are “insufficient professionals within the system” to provide the follow-up services. “Early intervention is the key, and we have heard stories of families waiting up to four years for intervention after receiving a diagnosis and this cannot continue,” said the Longford-based Fine Gael Senator.
In her contribution to the roundtable discussion, Hilda Duignan, who has four children, spoke of her own personal journey in trying to have her two youngest children, aged six and four, diagnosed with autism and the battle she has been waging every since in order to be able to access services on behalf of all autistic children.
She also spoke about her involvement with Autism Parents Athlone and told the committee that, up to last week, only one of the four secondary schools in Athlone town had made provision for special classes for children with autism. “12 children in Athlone had no school places in September of last year, but thankfully six of these are now being accommodated in the new special class at Athlone Community College, but that leaves six other children still in inappropriate settings,” she pointed out.
Ms Duigan said Autism Parents Athlone had set up a social club last September which now runs five clubs in the Athlone area and provides support to up to 50 families, and all of this work is done on a voluntary basis.
Claire Earley spoke about her nine-year old daughter, who has been diagnosed with autism, and said she feels her daughter has been “failed by the system in so many ways.” She told the Joint Committee that all parents of autistic children want is “to be listened to and to be able to access services” for their children.
Referring to the establishment of the Infinity Friends social group in Athlone last September, Ms Earley said “the HSE are now referring families to us” and she said it was “heartbreaking” to hear some of the stories being told by these families. “It absolutely kills me to have to turn families away from our social club but all of this is being done on a voluntary basis, I work full time for An Post and I haven't got any more fuel left in the tank to provide more and more clubs for more and more chuldren, as it is we are eating into family time to provide more support for more families.”