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Three-quarters of children with autism not getting needs met in public system

Some families are going into debt because of their child’s condition – one to the tune of €150,000.

Child with autism
Child with autism
Image: Shutterstock/Zahraa Saleh

A MAJORITY OF children and adolescents in Ireland with an autism spectrum disorder (ASD) did not receive a service they needed, according to new research published today. 

Over 74% did not receive one or more services over the previous twelve months according to a survey of 195 families with 222 children.

It also found that over one-third of families were in debt due to costs arising from their child’s condition. The average debt was €3,260 but one family surveyed was over €150,000 in the red.

  • (Read more here on how you can support a major Noteworthy project on the delays and waiting lists for public ASD assessment.)

“Families are under immense pressure”, said the lead author of the study, Áine Roddy from the J.E. Cairnes School of Economics and Business at NUI Galway. She explained that they often resort to borrowing money to pay for therapies as they “know that best practice is saying children should receive early intervention”.

Roddy said “the burden is immense” as these families are trying to meet their child’s needs. “Even if their needs are being met, you have to question how sustainable it is for the future if they’re having to go into debt”. 

Lack of services

Unmet needs were defined as those that were not being met through publicly-funded sources. Occupational therapy, social skills training as well as speech and language therapy were all identified as lacking.

Almost 90% of children aged 2-4 had an unmet need for speech and language therapy. This reduced to 57% of 5-12 year olds and 48% of adolescents. 

There were a number of reasons for why these needs were not met. 55% were on a waiting list for a service and over 61% said the services they needed were not provided in their area. 

The study, which is based on a survey carried out five years ago but just published in the journal Health Policy, also found that families with two or more children with ASD were more likely to experience these unmet needs as well as incur debt, than families with one child. 

“Felt alone” after diagnosis

In a previous study, Roddy found that the State spent most of the money allocated to autism services on special needs assistants. Though she feels “special needs assistants are vital”, in order to improve outcomes and reduce costs of autism across the lifespan, she feels that the State needs to allocate more funding to services. 

It may be the difference for someone who is severely impacted, that they may be that bit more independent as an adult if they did receive appropriate supports. 

The study author also acknowledged that some families feel they will get the services once their child is diagnosed but this is often not the case. “Some families wait up to two or three years for an assessment in the public system and are frustrated” as they want help. 

In the survey, many families said “that they felt so alone after they received the diagnosis and they didn’t know where to turn to”, according to Roddy. She said they often received a few speech and language therapy sessions but “the service provision wasn’t at an appropriate level to their child’s needs”. 

National strategy needed

In order to address this, Roddy said her first recommendation is to implement the promised National Autism Strategy. She was concerned that only three of the main seven parties promised this in their election manifestos: Fianna Fáil, Social Democrats and Sinn Féin. 

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This would enable “accountability and planning to address specific needs of people with autism”.  When coming up with the programme for Government, she felt “policy makers have the ability to reduce the level of pressure that falls upon these families who often face huge social isolation and financial hardship”. 

ASSESSING AUTISM Investigation

Do you want to know if a delay in getting a childhood diagnosis of autism spectrum disorder (ASD) is fuelling a private industry?

The Noteworthy team want to do an in-depth investigation into what is causing the long waiting lists and delays for public ASD assessment as well as what impact these delays are having on children and families around the country.

Here’s how to help support this proposal>

About the author:

Maria Delaney

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