Autism charity pressed over ‘substantial’ assets of €10 million

An autism charity with “substantial” assets of more than €10 million has insisted that it needs this level of funding to ensure it continues operating into the future, an Oireachtas committee has heard.

Senator Micheál Carrigy, chair of the Joint Committee on Autism, questioned what plans or programmes the Irish Society for Autism had for using assets which were detailed in its latest set of company accounts.

He said the assets represented “a lot of money” which could provide an “awful lot of work” with many parents’ groups around the country.

Tara Matthews, deputy executive director of the Irish Society for Autism, said the charity had a strategy to use the funding to provide support for families and people with autism.

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“Money goes very quickly, and that amount of money could be spent in a very short amount of time, so we have to be very careful about ensuring that we are there to answer questions into the future and so it doesn’t disappear very quickly and then there is nothing,” she said.

The committee heard that the charity, led by executive director Dr Pat Matthews, offers training and information across numerous sectors, carries out research and advocates on behalf of autistic people and their families.

Ms Matthews said the volume of queries and requests for assistance is increasing every year from families and even publicly-funded agencies,

“We get calls regularly from State departments – people who work in the HSE, people who work is Tusla – saying what services are available in our areas; we’ve got a family that needs help ... It’s not unusual for us to get emails like that,” she said.

“They don’t know where to go, they don’t know here to get information ... we even have schools asking us, who is our SENO [Special educational needs organiser]? The level of information that is not out there is mind-boggling.”

Ms Matthews said several reports and strategies in relation to autism have been written, none of which have had a substantial impact on the lives of Autistic people due to the lack of a legal framework to drive significant change.

She said the society was heavily involved in a Taskforce on Autism in 2001 and was hopeful that recommendations would be fully implemented to significantly improve the lives of autistic people.

“However, it is an illustration of one such comprehensive strategy that largely failed to be implemented,” she said.

She called for a new autism strategy that identifies the specific needs of all people, including carers and families, and which emphasises the need for data gathering.

[ ‘There is no such thing as a little bit autistic – you either have a form of autism or you do not’ ]

The committee also heard from Technological University of the Shannon (TUS) about how students with autism are being supported with exams – such as being given additional time or their own room – and access to personal assistant to help with study and organisational skills.

In addition, autistic students can leave classes if feeling overwhelmed and may wear ear defenders or use campus quiet areas for sensory reasons.

Referrals to other support services such as the Counselling Service, additional academic tuition, Pastoral Care and the Access Service are commonplace for autistic students.

However, Dr Frances O’Connell, vice-president of student education and experience at TUS, said the ever-increasing number of autistic students and funding limitations can feel as though “our hands are tied” in expanding supports.

She said the nature of the funding makes it difficult to plan for the long-term and can limit the university’s ability to address complex and ongoing issues.

Some funding involves a competitive process, where colleges must compete for limited funding. This, she said, can lead to organisations focusing on meeting the requirements of the funding rather than meeting the needs of the individuals that the funding is to serve.

She called for a three-to-five-year comprehensive funding model, along with funding to provide appropriate supports for autistic students’ needs to be ring- fenced.

Dr O’Connell also recommended increased autonomy for universities to use the funding to address students’ needs rather than following “absolute prescriptive qualification conditions and rules for the use of funding that may disqualify addressing genuine needs”.