Families bear bulk of costs of caring for kids with autism

The annual cost to families of caring for a child with autism is double what the State spends on autism-related health, social, and educational resources, according to a new study.

Research conducted by academics at NUI Galway found that the average annual cost per child for families who had a child with a clinically diagnosed autism spectrum disorder (ASD) amounted to €28,464.89, related to private ASD services, lost income, and informal care.

However, annual State expenditure per child on ASD-related health, social, and educational resources was €14,192. It noted that State expenditure does not increase in line with ASD severity.

The study, entitled ‘The Economic Costs and its Predictors for Childhood Autism Spectrum Disorders in Ireland: How is the Burden Distributed?’, used information gathered across 2014 and 2015 from 195 parents of 222 children, aged between two and 18, who had a clinically diagnosed ASD.

Published in Autism — The International Journal of Research and Practice, the study indicates that “autism spectrum disorder severity is significantly associated with higher out-of-pocket expenditures but not State health expenditures.

“The results suggest that parents are central to meeting the needs of young people with autism spectrum disorders in Ireland.”

It said that “significant investment and commitment is needed to address the needs of individuals living with autism spectrum disorders and their families”.

As for the sample in the study, almost 75% of the children were found to be verbal, while one fifth were not. More than half the sample had an intellectual disability and just over 46% had a medical card.

Regarding total out-of-pocket expenditure, the median cost was €6,560 per family, with living costs accounting for 29% of total out-of-pocket expenditure.

Home adaptations were also factored in, as were telephone costs — according to the study, “Telephone costs were included because of the increased isolation experienced by carers.”

Medical costs amounted to 19% of the mean total out-of-pocket expenditure, while out-of-pocket expenses for private therapeutic interventions and assessment were the highest category of medical costs incurred.

State-provided health services related to GPs, dentists, speech and language therapists, and occupational therapists, although the authors of the report said there was a “considerable variation” among the sample in relation to the rate at which those services were accessed.

One of the 95 children who accessed GP services over a 12-month period visited the doctor on 50 occasions.

The study states: “The key findings have shown that there is a significant economic burden associated with ASD among children and adolescents in Ireland, and that a considerable proportion of this is borne directly by parents rather than the state.

“Although special needs assistants are unquestionably a very necessary support with regard to helping children with particular tasks and inclusion, the lack of investment in mandatory ASD training for all teachers teaching children with an ASD is perhaps indicative of a focus on managing behaviours rather than a commitment to addressing the needs of a child.”

“The fact that condition severity is significantly associated with higher out of pocket expenditures but not State-level expenditures is also potentially instructive,” it said.

“It suggests that the State may provide a basic level of service for all those with ASD but do not appear to increase service provision as ASD severity increases.”