A five year-old's unwanted Christmas present – a three-year delay for treatment

Helen Ní Riain and her son Thormod Mac Fhinn, 5, at home in Balbriggan. Picture: Moya Nolan

As an unwanted Christmas present, it went way beyond the usual garish pair of novelty socks, the ironing board cover, or a wonky picture frame. 

In the run-up to Christmas, the postman delivered to Helen Ní Riain and her family the Service Statement from the HSE regarding interventions for her five-year-old son, Thormod. 

There was a touch of Dickens about the timeframes – it outlined the supports he is due to receive following an earlier diagnosis of autism: the start date for psychological supports – November 2023; start date for occupational therapy – November 2023; start date for speech and language therapy – the same; and physiotherapy – ditto. 

A service review date of December 2021 – exactly a year on from the date of the letter – was the seasonal kicker.

"It was a relief to open it to but to see dates for a review in 2021 and not doing anything until 2023 seemed contradictory, so we resigned ourselves to having to provide private services ourselves for which, because of Covid, understandably the waiting lists are astronomical."

If it seems grim, considering that Ms Ní Riain, who lives with her husband and two children in Balbriggan, Co Dublin, had been incredibly pro-active in pushing the HSE to deliver the services Thormod needs. 

⚠️ SPECIAL EDUCATIONAL NEEDS ⚠️

Parents, teachers and principals know just how big a battle it is to secure supports for children with special educational needs.

After going through months of screening assessments, educational psychological reports, OT sessions, etc it.. pic.twitter.com/6kf2tGKIQe

— Cathal Crowe T.D. (@CathalCroweTD) December 28, 2020

"We are in a unique position in that I am stubborn," she explains. Having got the process under way in late 2019, when the Assessment of Need (AON) – the key assessment which is meant to be delivered within a statutory timeframe and which is meant to unlock the services that follow a diagnosis – was delayed, Ms Ní Riain filed a complaint. 

"My initial feeling was I was not willing to wait 12 months anyway," she said, outlining how at one point she was told it could be two years before things began moving for Thormod. 

As with thousands of families around the country, delays to AON have been massively problematic for the family, despite strident efforts to push things along. In a letter last July regarding referral to an Early Intervention Team, the family was told "at present there is a 42-month wait for a regular assessment".

In a letter received last October, Ms Ní Riain was told by the HSE that her complaint was upheld and that various assessments should be completed no later than specified dates in December and January. Thormod's AON was finalised last November and specified that he was to receive referrals to primary care psychology, speech and language therapy, occupational therapy, and physiotherapy, "as soon as possible". 

And then came the letter indicating everything was far off in the distance, out into late 2023.

Such delays highlight concerns that the latest lockdown will hamper efforts by the HSE to tackle what was already a severe backlog in AON applications. That is despite an additional €7.8m having been allocated to community health areas last August to reduce waiting lists. 

In mid December, the Minister for Children Anne Rabbitte told the Oireachtas that a national backlog of more than 6,000 had been trimmed to 4,700 cases, but that was before spiralling Covid-19 figures in recent days plunged the country back into level 5 restrictions.

Minister will pledge to overhaul assessment system that is failing children with disabilities https://t.co/evyKWvDsHh

— Irish Examiner (@irishexaminer) December 15, 2020

Asked about the possible adverse impact of the latest lockdown on efforts to cut the already-chronic AON backlog, the HSE said: "The introduction of level 5 restrictions during the Christmas period will have a limited impact on this project as it was intended that report writing and administrative aspects of the process would be progressed during the holiday period. 

"However, any extended restrictions will potentially impact on the ability of families to attend appointments. Furthermore, Covid-related absences may also impact on the availability of staff. Each CHO area will evaluate the impact of same on their plans on an on-going basis."

As for the potential impact of the latest lockdown on related services, such as occupational therapy and speech and language therapy, the HSE said the pandemic had led to "unprecedented interruption to normal healthcare activity in the primary care setting"; staff absences and redeployment. The need for infection prevention and control measures and social distancing is also impacting on the capacity of the system to deliver services.

There is little comfort to be taken from that appraisal, and according to Ms Ní Riain: "I think it is quite clear [a further wait is likely], there is no doubt about that," she said. "These dates are going to be added to. If we can find money to bail out every sector that is going we should be able to find money for these services." 

It prompts the question as to whether the €7.8m allocated to tackle the backlog last August will prove sufficient. 

"I think it is kind of putting a sticking plaster on the problem, throwing money at it is not going to fix the problem," Ms Ní Riain said. "At the moment, the system is completely broken, it doesn't work for anyone unless you know your rights."

And even then, not always.