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(Ireland) Parents slam govt for failing children with autism, Committee on Autism told

Sept 20, 2022, (Ireland) RTE: Parents condemn State's 'blatant failures' on autism https://www.rte.ie/news/politics/2022/0920/1324520-autism/

Parents of children with autism have to "fight, fight, fight" for their rights because of the "blatant failures of the State", an Oireachtas committee has heard.

Ciara Jones, of the Autism Support Hub, recounted the "loss, worry and helplessness" she experienced when her son was diagnosed with autism ten years ago.

She told the Joint Committee on Autism that a decade on parents getting diagnoses are still facing the very same dread.

Another mother, Karen O'Mahony, recounted how families are "treated badly, left behind without support", "discriminated against and neglected".

She is CEO of the Rainbow Club, and has four children, two of whom have autism….

She told Fine Gael TD Jennifer Carroll MacNeill that hers "is one of many families in Cork that it has happened to"….

'Absolutely no change'

Margaret Lowndes, who founded the Dublin 12 Campaign 4 Autism Inclusion group, has "two children with additional needs".

There has been much talk "year after year" but "absolutely no change", she said.

She told the committee that her son is still awaiting a full assessment for ADHD, and his mental health is deteriorating.

"Nobody is answering the phones," she said.

Caroline Poole has two children with CAHMS, and recounted recently having had an appointment cancelled with no notice, when her daughter was "in crisis".

Senior medical personnel, such as psychiatrists, are often not available, she said, and staff constantly change, preventing the establishment of any effective therapeutic relationship.

A heavy toll

Miriam Jennings described the havoc wrought by the lack of support over the summer holidays.

The absence of structure is "frightening" for children with autism, she said. "They regress rapidly," she added.

This leads to "destructive outbursts, and absconding", along with "increased aggression", which takes a heavy toll on the family.

She recounted how siblings become carers and see their summer disappear.

Ms Jennings and other parents established the Special Needs Schools and Classes group. Their children's "complex" needs are "severe, multiple and present from cradle to grave", she said.

Most families struggle to get school places, Ms Jones said, and even then, are often faced with schools which have "no understanding" of their children's needs.

On top of this, parents are forced to fill out endless "burdensome forms", she added, and then have to appeal when they are refused the Domiciliary Care Allowance.

Reform of the DCA process will "go a long way" to helping patents, Ms Jones said.


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