An autism charity has called on the Department of Health to identify the exact number of families currently waiting for a carer’s assessment.
Autism NI says social services are ignoring the needs of parents whose children have autism and only an audit will reveal the true extent of the problem.
The BBC has learned that official figures fall short of the number of carers who say they need help.
Earlier this month, a High Court judge found the Western Health Trust had breached its duty to carry out assessments and provide services to carers of children with autism.
The case triggered hundreds of calls to local charities and the Children’s Law Centre.
According to most of these families, they were either unaware that as carers they were entitled to an assessment, or if one had been carried out, services such as respite care were not provided.
Autism NI family support officer Paula Hanratty says the Department of Health needs to carry out an audit of how many families are waiting for assessment or for vital services.
“This is urgent – we know there are hundreds of families out there who are desperate for services, desperate for help, and they’re not getting it,” she said.
Figures obtained by the BBC suggest about a dozen families across Northern Ireland have applied to the health trusts for such a service.
Autism NI says this discrepancy highlights the urgency for an audit to be carried out.
The BBC asked the four remaining health trusts; Belfast, South Eastern, Southern and Northern, for the number of carers currently waiting on a service: the total was a startling 12.
This is despite local charities and the Children’s Law centre saying they know of hundreds of such cases across Northern Ireland.
Part of the issue, according to Eamonn McNally, mental health solicitor with the Children’s Law Centre, is that social workers are not telling families of children with autism that they are entitled to a carer’s assessment.
“In fact, a number of cases have told us that the social worker has actually said they are wasting their time submitting for help, as there is no money left to provide it,” he said.
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