Mick Clifford: Children's needs come after those of HSE and its political paymasters

Cork North, Cork North Lee and Dublin South West, failed to process a single application for assessment of needs within the three month timeline

The average waiting time for an assessment is now 17 months. File photo: iStock

Anne Rabbitte is mad as hell and she isn’t going to take it any more. The junior minister for Disabilities has written to the HSE to express her annoyance at the “indefensible” delay in the assessment of needs for children with disabilities. 

Children whose parents believe that they require services for a disability are now waiting for an average of 17 months for an assessment. Without an assessment, they are not entitled to access services.

In many areas of disability for children, time is vital. Arresting or treating a condition can make a massive difference to a child’s prospects all the way into adulthood and beyond. The cost saving of an early assessment in human terms, for the child and parents, is immeasurable. 

In bare financial terms, for both the family and the State, it is difficult to quantify and while nowhere near as important as the human cost it does represent a chunk of so-called taxpayers’ money. Yet the HSE persists in failing in what should be its moral obligation and its legal obligation.

Speaking to the Irish Examiner’s Elaine Loughlin, Ms Rabbitte said that the files have not been handed to the appropriate professionals by the HSE which in turn has prompted major delays in acquiring assessments.

“I am not a spokesperson for the HSE,” she said. “I will not be an apologist for the HSE and sometimes when things are wrong you can’t defend the indefensible.” 

The report in Monday’s Examiner could be read two ways. Either this was a rare example of a minister calling out a major agency of her department for failing to do its job. Or it was a politician deflecting blame for a scandal onto the public service. 

To be fair to all involved, it’s probably a bit of both, but that makes it no less a scandal.

This scandal has been ongoing in the shadows of the public glare. It is not front and centre, simply because it is not perceived in the body politic to be an issue that exercises the public to an extent that will cost votes. As a result, those who are adversely impacted are destined to suffer on in quiet desperation.

The major importance of early diagnosis in children was recognised in the 2005 Disability Act. The act stipulated that an assessment of needs for children with a disability should take place within three months of application and be completed in another three months. 

Any timeframe for the provision of services is highly unusual in law. This one enshrined an extremely tight window to provide the assessment in recognition of the importance of early diagnosis and the commencement of treatment that can greatly alter a life.

In many areas of disability for children, time is vital. Arresting or treating a condition can make a massive difference to a child’s prospects all the way into adulthood and beyond. File photo: iStock

The law passed, the government of the day and its successors then just handed matters over to the HSE. There appears to have been little political muscle expended in ensuring that the HSE would observe the law. 

There was, for example, no direction on ringfencing resources to ensure that the HSE fulfilled its legal obligation. There was no ministerial directive on the publication of say, quarterly figures for applications and completed assessments. The health body was just handed what was, in some respects, a major task and told to get on with it.

Inevitably, parents, worried about their children’s future and exhausted from battling, went to courts to assert their rights. A whole slew of legal actions were initiated. Those that made it to court were then usually dealt with but only so many families have the know-how or resources to take a major state agency to court. 

Yet the actions kept mounting. Earlier this year the Irish Examiner published figures which showed that between 2018 and 2020 there were 212 legal actions taken against the HSE in relation to assessments. The legal costs for the health executive in these actions amounted to just over €700,000. 

One wonders how many assessments could have been done in a timely manner with that kind of money.

The response from the HSE to mounting legal challenges was to effectively change the law without recourse to the lawmakers. In January 2020, the assessment of needs was replaced with a new “preliminary” assessment, after which the child is referred on for another, more complete assessment. 

The HSE claimed the new system was designed to speed up the process. Most interested parties, from advocacy groups to professional bodies, instead smelt a rat. Legally, it would be much easier to meet the strict time limits when a preliminary assessment rather than a full assessment was to be conducted. 

As such, the spirit of the 2005 act was trampled underfoot. The needs of children were now being relegated below the needs of the HSE and its political masters.

Yet despite all that the waiting lists persist. The average waiting time for an assessment is now 17 months. Just 14% of the 1,270 applications for assessment received by the HSE between June and September this year were actioned and referred on to the relevant services. 

Some areas, including Cork North, Cork North Lee and Dublin South West, failed to process a single application within the three-month timeline. A one-off deployment of €8.7m to the area last August does not appear to have made much difference.

On Monday, Micheál Martin said that the government had invested significant resources in assessments since coming to office. 

“Everybody has to work together on this, the minister is driving forward this and is very passionate about it and wants results in respect of therapies, and not just in terms of assessment, but in terms of actual therapeutic interventions for children who require such therapies.” 

Of course he is correct, but every one of his predecessors since 2005, every senior or junior minister for health in the same time period, either could or did say the same thing. What appears to be lacking is the political will to stick with the programme. 

We have seen in other areas of health and governance in general that when the political muscle is applied and sustained, things can get done. The current minister for disabilities is certainly making all the right noises. 

Time will tell whether she will be any different to her predecessors in ensuring that parents and children who are legally entitled to vital services have their rights properly observed.