Delays of several years in assessing the needs of children with suspected disabilities amount to a serious and ongoing violation of their rights, according to a highly critical report by the Ombudsman for Children.
There is a legal requirement on health authorities to assess the needs of children within six month of receiving an application.
However, latest figures show just under 10 per cent of assessments are being carried out within this time-frame. A total of 5,533 children are currently overdue an assessment, with some waiting years for a response.
These assessments are crucial to helping vulnerable children to talk, move, learn and participate in education.
Ombudsman Dr Niall Muldoon said these "grossly unfair" delays were robbing children of their potential and may affect children for the rest of their lives.
“As a parent, knowing this, it is devastating to hear that your child will be waiting years for services like the children’s stories we have included in this report,” he said.
His investigation found that some parents are so desperate that they have taken credit union loans out to pay for private therapies. Others have paid costly legal bills to take the HSE to court to obtain an order forcing them to undertake an assessment for their child.
"This is completely understandable, but the outcome is that it inevitably pushes further down the list a child whose parent with limited means that cannot afford to go to court," he said. "This is grossly unfair for what is a statutory right for children in Ireland. "
The report chronicles the case of Lucy, who is non-verbal and has a diagnosis of autism and a mild learning difficulty.
Still waiting
Clinical services recommended that she have a needs assessment when she was six years of age. She is now 11 and is still waiting for the services identified.
In another case, four-year-old Sarah, who has sensory issues, was told she faced a 27-month wait for a needs assessment.
Dr Muldoon said his office has received “countless complaints from distraught parents” whose children have been on a waiting list for years to access an assessment of need for their child.
Additionally, many have found that once their child is assessed, they struggle to get any or all of the services recommended to help their child talk, move, learn and grow.
“It is reasonable for any parent to expect that the State will provide easy access to services, which will enable them to make the right decision about the care, education and health of their child,” he said.
“If the policies that are actually in place in Ireland were properly adhered to, we would have a world-class system in place; however the reality is that in practice this is far from the case.”
In a series of recommendations, the Ombudsman says the Government must follow the international children’s rights framework to ensure all children’s rights are recognised and protected.
Sustainable changes
The report also says far greater investment– up to 10 times the current level of resources – are needed to get to grips with the significant waiting lists. While welcoming a recent announcement by Government of €7.8 million in extra funding, it says it must come with a clear strategy to make sustainable changes into the future.
Key legislation – including the Disability Act (2005) and Epsen Act (2005) – should be amended to strengthen and speed up access to assessment and clarify children’s entitlements, the report continues.
The report also calls for a “whole of government” approach to review access criteria for services where a diagnosis is required and to ensure there is a clear pathway to services for all children based on their needs.
Review
In response to a query whether it was satisified that the assssment system was fit for purpise, the HSE said it welcomed the Ombudsman’s report and its call for a review of legislation in the area.
“The HSE is committed to actively participating in any review of this legislation,” a spokesperson said.
It added that the HSE has endeavoured to meet its legislative obligations under the Disability Act.
It said a High Court ruling a decade ago widened eligibility to all children, whereas the the HSE and the Department of Health had interpreted the legislation as applying to under-fives.
The number of applications relating to over-fives grew from 26 per cent to 52 per cent of all cases netween 2011 and 2018.
To help address this situation, the HSE said it has implemented revised standard operating procedures.
