Dossiers on children with autism led to ‘crisis of trust’ – charity chief

Autism community faced ‘unprecedented challenges’ in last year, says Adam Harris

Adam Harris is the  chief executive of autism charity AsIAm. Photograph: Dara Mac Dónaill/The Irish Times

Adam Harris is the chief executive of autism charity AsIAm. Photograph: Dara Mac Dónaill/The Irish Times

 

Revelations in an RTÉ Prime Time programme that the Department of Health compiled dossiers on children with autism without their consent has led to “a lot of crisis of trust and confidence in our community”, according to support group AsIAm.

Speaking on World Autism Day on Friday, the charity’s chief executive Adam Harris said over the past year children with autism and their families have faced “unprecedented challenges”.

“The loss of routine and structure coupled off with the loss of support services has meant that many people really do feel at this time that they’re crying out for support and greater understanding and acceptance,” he told an online event.

“As well as that, last week’s PrimeTime investigations programme has led to a lot of crisis of trust and confidence in our community.”

Shane Corr, a senior civil servant at the department, told the programme he had seen dossiers containing sensitive information on children and their families who were involved in legal actions against the State.

The department has said it never unlawfully held sensitive, medical and educational information about children involved in dormant court cases, and said this was confirmed by an independent review carried out by a senior council. A number of bodies, including the Irish Human Rights and Equality Commission (IHREC), have called for this review to be published.

Change needed

Minister of State for Disability Anne Rabbitte told the event she was “saddened” to learn of the allegations.

“It would be disingenuous of me not to address this issue today as I know all too well how this has rocked parents to the core. It has caused upset and shock,” she said.

The Galway East TD said she had met with AsIAm to discuss members’ concerns raised following the programme.

“As I said in the Dáil and the Seanad this week, while different legal experts say such case management may be legal it does not make it right,” she added. “The current system lacks transparency and needs to change. Trust has been broken and only when we have a more transparent system will trust be restored.”

‘Overwhelmed’

Mr Harris said queries to the charity had risen by 280 per cent over the last year, which related to housing and employment challenges as well as people with autism “really feeling overwhelmed by all of the changes in routine and structure we are living with”.

Mr Harris said despite this, the Covid-19 pandemic provides an opportunity to redefine school, work and community and to rebuild them “in a more inclusive and more accessible way for everybody”.

“Autistic people everyday have to adapt to a society that isn’t built with us in mind and too often it is simply not possible to interact or be part of day to day activities because of a lack of understanding, a lack of accommodations or acceptance,” he said.

Ms Rabbitte said waiting lists for the delivery of therapeutic interventions were “simply far too long”. She said she was working with the Minister for Health Stephen Donnelly and the HSE to develop ways to ensure children had access to clinicians in a “timely manner”.

“It’s important for me to say parents receiving letters from the HSE that says you will be seen in 46,49,47 months is not acceptable and I will not stand over [it],” she added.

Ms Rabbitte also said it was her intention to develop an “innovation autism strategy” as well as a working group to ensure its establishment.