Moving the goalposts won’t solve the problem of autism assessment wait lists

Every year sees more and more delayed autism assessments. The HSE has a proposal to fix the problem, but is it simply a case of lack of resources? Michael Clifford reports

Ian and Josie Diamond from Walkinstown in Dublin with their son Dylan, 5, who has autism and is receiving no formal education because of the unavailablility of a suitable place for him in either a primary school with an Autistic Spectrum Disorder (ASD) unit or a special school. Pictures: Moya Nolan

On Friday, February 7, the latest case about children being denied their rights was before the High Court.

The case concerned three boys who have displayed symptoms consistent with Autism Spectrum Disorder (ASD). Their mother urgently wants her sons’ needs assessed in order to access treatment, if required.

Early intervention is vital in attending to ASD. It can make the difference between somebody making giant strides towards functioning emotionally and socially or retreating into an often impenetrable cocoon.

This reality is acknowledged in law. The 2005 Disability Act provides that children be assessed within a tight timeframe so that tailored treatment can be identified and started expeditiously.

However, the HSE has consistently failed to comply with the law. Repeatedly, children have not been assessed within the legal timeframe, thus exposing them to a greater threat of not receiving treatment in a timely manner.

The recent case before the High Court illustrates the point. Under the 2005 act, children must be assessed within three months of applying. A report of the assessment must be completed within another three months.

The High Court heard that an application to have the three boys assessed was lodged in late March 2018. Yet nearly one year later, they are still waiting.

Judge Seamus Noonan was told that the HSE is now committing to having the assessments completed within eight weeks. The outcome would suggest that only when a court ruling looms does the HSE manage to get its act together.

The three siblings also have an outstanding claim for damages and aggravated damages for the delays to which they have been subjected. The case is one of dozens coming before the High Court and circuit courts in recent years on behalf of children in similar predicaments.

To the greatest extent, the failings in the HSE is down to resources, but a question arises as to why priority is not given to this area.

Another typical example of how children are being denied their rights occurred in the case of Dylan Diamond, which featured on these pages last month. Dylan’s father Ian applied for the assessment of needs in late August 2015. He was due to receive a final report at the end of January 2016. Yet it never came. Despairing, he sought a private assessment in July 2016, which he received quickly.

Deadline missed

Ian Diamond lodged a complaint over the failure to furnish him with his son’s assessment in August 2016. The complaint was upheld with an instruction that the final report be completed within a month. Again, this deadline was missed and he appealed the failure to comply with his appeal in November.

Finally, on December 21, 2016, nearly a year after he was entitled to be told what needs his son has, he received the assessment report.

The importance of early intervention cannot be overstated. In another High Court action taken last year, involving two similar cases, Dr Rita Honan, a chartered psychologist and authority on autism, laid out the stark reality for the court.

“Diagnosis is the gateway to treatment and the subsequent reduction of symptoms and increased cognitive and adaptive functioning for the majority of children on the Autism Spectrum,” she said in an affidavit.

“Every day this is delayed leads to missed learning opportunities.” She went on to relate how the Applied Behavioural Analysis (ABA) treatment had shown how early intervention can make all the difference.

“Some pre-schoolers who participate in early intensive ABA for two or more years, acquire sufficient skills to participate in regular classrooms with little or no additional support.”

And she noted that the considerable body of clinical and literature-based research was not a big secret.

“All of the foregoing is well-established, widely-known and accepted and…the respondent (the HSE) is well aware of the critical need for early diagnosis and dedicated interventions.”

Yet thousands of children are being denied their right to timely assessment.

According to HSE figures, the number of assessment applications not completed in the designated 90-day timeframe in 2008 was 1,143. By 2017, this figure had risen to 2,154. By October of last year, 3,662 assessments were overdue.

Inevitably, this failure to observe the rights of children is going to lead to legal actions for damages.

In December, the Irish Examiner’s Noel Baker reported on one such case. In this instance, a High Court judge gave the family of a four-year-old boy with autism leave to pursue aggravated damages against the HSE over its failure to deliver an assessment of needs for him within the required timeframe.

The ex parte application for judicial review is seeking aggravated damages on behalf of the boy, claiming that without the proper resources, there is a “serious risk that his development may be permanently affected”.

It also hit out at the “futile” complaints mechanism and claims the HSE uses it as a “delaying tactic”.

Children’s rights solicitor Garth Noble is convinced that these kind of cases are going to multiply. Parents who believe that a deterioration in their child’s condition because of a failure in early intervention are bound to seek restitution in the courts.

“You will have a host of civil actions from children seeking damages because of the late delivery of the assessment of needs,” he says. “Early services are vital for children with conditions like autism, but if you have a system that kicks the can down the road this will inevitably lead to legal actions at some stage.”

Streamline assessments

Management in the HSE is acutely aware of how it, a State agency, is not meeting the requirements of the law. To that end, a new method of assessment — or Standard Operating Procedure — is being proposed. This will, according to the HSE, streamline assessments, ensuring demand is met.

“The (Disability) Act does not define this assessment and the process is not standardised across the country,” the HSE said in a statement issued to the Irish Examiner. “This lack of standardisation and clarity has contributed to significant delays in the Assessment of Need process.”

That’s a position that wouldn’t find much favour with many parents, health professionals and legal advocates.

The widespread belief is that the mounting delays are down simply to a lack of resources.

“They’re trying to shift the goalposts as a result of the legal actions that have been taken,” Gareth Noble says.

He is of the opinion that the proposed Standard Operating Procedure is constructed in a manner that might allow the HSE to undermine the law.

As the HSE has noted, the assessment is not properly defined in law. If a process is designed that narrows the definition of an “assessment of needs”, it may remove the legal obligation under the 2005 Act.

Health professionals also have concerns. Bodies representing psychologists, speech-and-language therapists and occupational therapists all appeared before an Oireachtas committee looking into the matter.

All expressed concerns that the HSE’s new model would be flawed as it would not reflect a proper assessment, according to their professional opinions.

The Oireachtas Health Committee has taken all these concerns on board. In a report issued earlier this month, the committee recommended that there be further talks between these bodies and the HSE before proceeding.

Everybody agrees the current model is not working. Children’s rights are being abused. Increasingly, recourse is sought in the courts, eating up time and money. The prospects of wholesale actions for damages looms.

But a large question mark hangs over the HSE’s proposed solution.

Is the health executive primarily motivated by doing things right by children?

Or is the driving force to make the law, and children’s rights as defined within, go away?

A simple solution might be to apply the required resources.

While the call on resources within health are many and varied, surely the needs of the most vulnerable children should have a high priority.

System failing thousands of children with autism — and their parents

There are at least 13,700 children of school-going age who have been diagnosed with Autism Spectrum Disorder, according to a recent report.

The report, ‘Estimating Prevalence of ASD In The Irish Population’ was commissioned by the Department of Health and published last November.

The report concluded that there were no definitive figures for ASD, but one of the most accurate estimates came from those accessing services through the National Council for Special Education (NCSE).

The NCSE data does not take account of “the number of four-year-olds that are not in school, or children aged four or older who are on the Home Tuition scheme and not included in overall school population figures.”

With those caveats, the data shows that the NCSE has recorded 13,703 children as diagnosed with ASD. This represents 1.5% of the school-going population of 883,903.

Last year also saw the publication of a review of services in the area of ASD. The review, commissioned in 2017, pointed to a wide range of problems and shortcomings in services. It also dealt with the impact on parents of children living with ASD.

“Approximately 70% of mothers and 40% of fathers of children with ASD experience high levels of stress. Parents have also been reported to have higher levels of daily life hassles and stressors, anxiety and depression and diminished overall well being,” it reported.

“In addition to the emotional impact which ASD can have on a family, it has also been found to negatively impact on the livelihoods of parents.

“This significant impact on the lives of parents and families of those with ASD undoubtedly warrants attention.”

Six years ago, a similar review of autism services pointed to a number of areas that warranted attention. The report said there were gaps in services and referenced “the imperative for a clear focus on the individual and their family in ensuring that the needs of the individual remain at the centre of service provision.”

The 2017 review which contained no analysis of the failure to provide the services since they were recommended five years previously.

“The HSE needs to ensure that people with ASD and their families have easy access to various healthcare providers so that they get the right service at the right time.

“Teams which consist of different professionals should function as teams rather than individual practitioners and services should work in an integrated fashion. People with ASD and their family members should be engaged in service design and service delivery.”

There is no indication that the recent review will be any more useful in filling the yawning gaps that still exist in the provision of services.

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