February New Study Shows 74% of Children & Adolescents with an Autism Spectrum Disorder Had Unmet Service Needs in Ireland

Autism most expensive condition internationally

A new study published by NUI Galway health economists has provided the first assessment of the level and nature of unmet service needs of children and adolescents with an ASD as well as debt related to meeting needs of such families in Ireland. The study’s findings were published this week in the international journal – Health Policy - and are of great relevance given Ireland’s forthcoming National Autism Strategy to address the needs of the autistic community. It is the first international study to examine the predictors of unmet service needs and debt while controlling for predisposing, enabling and need factors. 

The key findings from the study based on a national survey on the economics of autism spectrum disorder in Ireland among 195 families with 222 children aged between 2 to 18 years of age in 2014/2015 show:

Prevalence of unmet service needs and ASD specific family debt:

• The findings from parental reported responses show over 74% of children and adolescents did not receive one or more services in the previous 12 months
• 33% of families incurred debt in the previous 12 months specifically due to the child’s/children’s condition resulting in an average ASD related family debt of €3,260 per year 
• ASD severity and families that had two or more children with an ASD were significantly more likely to experience unmet service needs, while families that had two or more children with an ASD were also significantly more likely to incur debt in the previous 12 months specifically due to the child’s/children’s condition 

The study was based on a national survey conducted by Áine Roddy, J.E. Cairnes School of Economics and Business at NUI Galway and was funded by the Irish Research Council and Autism Ireland. 

Áine Roddy, the study’s lead author said: “The publication of this study provides timely evidence on the magnitude of unmet service needs and the susceptibility to future unmet needs experienced by children and adolescents who are autistic in Ireland. The financial and quality of life implications of not addressing the needs of autistic people with appropriate services and supports are profound. Policymakers need to understand that we need to spend in order to save, as research shows that autism is the most expensive condition internationally due to the substantial economic burden on State expenditure for adult assisted care provisions, institutional care costs and high unemployment rates (80%) among autistic adults.”

“We need to invest to improve long-term outcomes and support autistic people and their families. Their needs are across the lifespan for the 1 in 65 people who are autistic in Ireland and their 234,000 immediate family members who face significant daily challenges due to social and financial isolation. Last April a motion put before Dáil members in Ireland to set up a Parliamentary Committee on Autism and publish a National Autism Empowerment Strategy received unanimous political support.  Ireland is still awaiting the delivery of an overdue National Autism Strategy which requires a framework that draws from evidence-based research in partnership with the autistic community.”

Reasons cited for having unmet service needs included:

• 55% of the 222 children had unmet needs arising from being on a waiting list for currently provided services
• Over 61% of children had unmet needs arising because the service(s) concerned were not currently provided 
• 31% of children had unmet needs arising because no private services were available in their area

Some examples of unmet service needs:

• Parental reports of unmet needs for occupational therapy for children showed 79% of children aged 2-4 years, 69% of children aged 5-12 years and 59% of adolescents aged 13-18 years had unmet service needs for occupational therapy in the previous 12 months
• Unmet needs for social skills training/group were reported for 46% of 2-4 year olds, 47% of children aged 5-12 years and 61% of adolescents aged 13-18 years
• 88% of children aged 2-4 years had an unmet need for speech and language therapy, with 57% of children aged 5-12 years and 48% of adolescents aged 13-18 years also having an unmet need for speech and language therapy

Policy Implications for Future National Autism Strategy

• There is a significant level of unmet need and economic hardship, as evident in the level of ASD-related debt
• Issues exist with current capacity, geographic inequalities and inadequate publicly-funded provision that warrant a policy response
• Addressing unmet needs is complex and requires careful planning and commitment on behalf of policymakers regarding designing and delivering autism specific services. The future National Autism Strategy, forthcoming in Ireland, requires a framework which: draws on research; should tailor services to severity level; ensure all children with ASD have access to care per their rights under the Disability Act; identify families with two or more children/adolescents with an ASD and provide appropriate supports; families with children with an ASD, based on our findings require additional financial support and/or greater support around flexible employment and carer-giver leave; and investment to design and implement cost-effective services and supports to address unmet needs

Professor Ciaran O’Neill the study’s co-author is Professor of Health Economics Queens University Belfast and Adjunct Professor of Health Economics at NUI Galway.

To read the full paper entitled “Predictors of Unmet Needs and Family Debt Among Children and Adolescents with an Autism Spectrum Disorder: Evidence from Ireland” in Health Policy visit https://doi.org/10.1016/j.healthpol.2020.01.005.

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