Sep 24 2015 Posted: 14:03 IST

Participants sought for national survey on the economic costs for families raising a child with an autism spectrum disorder

A PhD scholar from NUI Galway, in association with Irish Autism Action is leading a research study and seeking participants as part of a national survey calculating the economic costs to families raising a child or children with an Autism Spectrum Disorder (ASD) in Ireland.

The national survey, which is strictly confidential, is being conducted by Áine Roddy, an Irish Research Council and Hardiman PhD Scholar in Health Economics under the supervision of Professor Ciaran O’Neill at the J.E. Cairnes School of Business and Economics at NUI Galway. The study aims to establish what the economic costs of autism spectrum disorders are in Ireland for children aged between 2 to 18 years.

This is the first international study that will provide an in-depth analysis and evidence-based research on issues that affect families such as the financial costs, level of debt as a result of the condition, health services accessed, educational supports in place, impact on employment and household income. In addition to the time involved in caring for their child’s special needs and safety.

This research will be used to inform public policy about the economic burden on families raising a child or children with an autism spectrum disorder in Ireland. Limited research has been carried out on this issue in Ireland, which makes this survey and the involvement of parents particularly important. It is hoped the findings will help inform the development of evidence-based policies to meet the needs of those whose lives are impacted by autism.

The research has been supported and advanced by Kevin Whelan, CEO of Irish Autism Action, and everyone who returns a completed survey has a chance to win 1 of 5 iPads kindly donated by Irish Autism Action. To date, the survey has been distributed in the post by Irish Autism Action, Shine Ireland and Dóchas autism organisations.

Áine Roddy says: “We are very grateful to all the parents who have completed and returned a survey so far. However, more participants are still welcomed. 1 in 100 people in Ireland are affected by an autism spectrum disorder, yet there is no register or data available on the numbers who access services or require them. The information gathered from this survey is vital to establish what services are accessed by children aged between 2 to 18 years and calculate the economic impact of autism spectrum disorders on families and society. A recent study conducted in the United Kingdom by Beuscher et al. 2014 showed that autism costs the United Kingdoms’ economy £32 billion per year. The cost of autism to the UK’s economy is more than its combined cost of cancer, heart disease and strokes, yet targeted investment in autism spectrum disorder services and supports remains an underfunded area.”

Ms Roddy added, “Behind these figures lies the reality that many families are under a huge financial strain trying to pay for private services and interventions due to a lack of services and long waiting lists. There are also several children with unmet service needs, and parents having to give up paid employment to become full-time carers, not to mention the costs associated with long-term care. The survey gives parents a voice to let policymakers know the extent to which their lives are affected by autism spectrum disorders, whilst providing them with an opportunity to explain what better services means to them. I will write an evidence-based report on the findings which will be available to the public next year through autism organisations social media. I would like to reassure all parents that the information they provide is strictly confidential and will not be passed on to any third parties.”

Parents and families from every county in Ireland have the opportunity to contribute to the survey so that their voice can be heard. The closing date to complete and return the survey form is Friday, 23 October 2015.

The survey can be downloaded as a pdf file from the Irish Autism Action website http://www.autismireland.ie/news-events/news/1445/ and returned by email or freepost to Áine Roddy. Alternatively, participants can request that the survey is posted to them.

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