Last Friday the High Court handed down a ruling that should be a source of national shame. Judge Siobhan Phelan determined that the HSE’s idea of assessing whether children have particular needs was contrary to the law.
Effectively, the State agency was attempting to deflect from its failure to fully observe the rights of children with additional needs.
This reflects very poorly on not just the HSE but on the political culture. The HSE has failed abysmally to comply with the Disability Act of 2005, but there is precious little evidence that successive governments have applied sufficient pressure to ensure compliance.
Last week’s High Court ruling was from an action taken on behalf of two children but was typical of dozens of cases taken in recent years, which in turn have replicated the experiences of thousands of children and their parents. In each of the two cases, the parents applied for an assessment of needs, as is their right. Under the 2005 act, the HSE is obliged to provide such an assessment within 90 days. This then ensures that the relevant services can be accessed in a timely manner.
Time-specific legislation like this is highly unusual. As such, the Disability Act was expressly recognising the importance of early diagnosis in addressing additional needs among children.
Speed is of the essence and can often determine the extent to which a child with additional needs can go on and maximise their potential
This issue was encapsulated in evidence during a High Court hearing in 2018, in one of the cases taken by parents over the failure to access an assessment of needs.
Chartered psychologist Dr Rita Honan told the High Court in that case that diagnosis is the gateway to treatment and that in turn leads to increased cognitive functioning for the majority of children on the autism spectrum.
“Every day this is delayed leads to missed learning opportunities,” she said in an affidavit.
Dr Honan 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.”
Dr Honan noted that the 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.”
That was the basis on which the time-specific legislation was introduced in 2005. It was a recognition that in what was by then a wealthy country, there could no longer be any excuse for not ensuring that all children were provided with the tools to maximise their potential, whatever that may be.
Thereafter, however, the enforcement of the law fell by the wayside. Responsibility was passed onto the HSE and the agency told to get on with it. No pressure was applied to ensure that sufficient resources were allocated to ensure compliance with the law.
Without the application of pressure in a system stretched and, in places, slightly chaotic, there was never much chance that the Disability Act would ever herald the brand new dawn it appeared to promise.
In 2008, according to HSE figures, the number of assessment applications not completed in the designated 90-day timeframe was 1,143. By October 2018, 3,662 assessments were overdue. By then, the legal cases began mounting up.
Cases were taken on behalf of individual children who’d been waiting often more than a year for an assessment
In each case, once the matter arrived in court, the HSE got cracking and promised to get it done within weeks.
For those who didn’t or couldn’t access legal accountability, there was no such urgency.
The whole thing was a lottery freighted with worry, stress, and exhaustion, as parents despaired while the clock ticked on their children’s chances of reaching potential.
The HSE’s response was to move the goalposts. In 2019, in opposition to politicians and professional health bodies, the agency replaced the Assessment of Needs (AON) process with a Standard Operating Procedure (SOP), which amounted to a preliminary assessment.
In order to speed things up, the HSE was effectively changing the law on an ad-hoc basis. The ostensible basis forwarded for the change was to standardise assessments across the country.
As Judge Phelan’s ruling last week referenced: “It is acknowledged by the respondent [HSE] that prior to the adoption of the SOP, AON were more extensive and involved a range of diagnostic assessments. The evidence suggests that some assessments took as long as 90 hours of clinical time, with an average time of 29 hours clinical time.
"In contrast, due to the changes introduced by the respondent in relation to the nature of how assessments are completed by way of a preliminary team assessment, such assessments conducted under the new SOP are typically completed within 60-90 minutes of clinical time.”
The time involved in assessing the child’s needs, across a range of disciplines, went from an average of 29 hours to between one hour and 90 minutes
This, the HSE believed, allowed the agency to fulfill its obligation under the Disability Act. The judge disagreed and, barring any appeal, brought an end to a shameful attempt to subvert a law designed to protect some of the most vulnerable in society.
The HSE tried it on, was warned that they were trying it on, but went ahead anyway
That is a poor reflection on governance of the health body but it also raises questions as to how serious is the body politic in ensuring that the rights of children with additional needs are fully met.
In a health system that does some things well, and others badly, political pressure exercises disproportionate power. In this area, pressure can only be applied through extra resources and hyper-vigilance on behalf of the elected government. So far, there is no sign that such will is present.