Assessment of Need: It got to the point of ‘I am going to have to go to court’

As a result of the ruling, the HSE is making contact with the families of approximately 10,000 children, whose Preliminary Treatment Assessment has, over the past two years, involved the SOP, to ask them if they want a fresh assessment for their child.

For Mary (not her real name), it wasn't quite a typical month. Earlier in March, she was part of a successful High Court challenge which upended the HSE's much-maligned method of screening Assessment of Need cases for children. 

But in other ways, March has been as expected: she is still waiting to hear what services are going to be provided for her son.

Mary brought the judicial review proceedings on behalf of her son, alongside another family on behalf of another child, resulting in a hugely significant ruling by Ms Justice Siobhan Phelan, in which the HSE's Standard Operating Procedure (SOP) was deemed unlawful. It now means that the HSE is making contact with the families of approximately 10,000 children, whose Preliminary Treatment Assessment has, over the past two years, involved the SOP, to ask them if they want a fresh assessment for their child.

Yet despite being at the forefront of efforts to challenge the SOP, when the process began, Mary says she didn't know the "nitty-gritty" involved in accessing child supports.

"Even now, and this is for a lot of parents, you don't know what the standards are or what the procedures are," she says. 

You are looking at the emotional side. You are taking things as they come, you don't even know how to navigate it at the start.

Her son turned three last month. 

"When he was small he was always very quiet, people would comment on it, 'isn't it great', and I never really put much stock in it," she says.

"Then when he started to hit the milestones - at 13 months there was no talking, he started walking but on his toes, permanently, never flat."

Hoping for the best

Mary self-referred for an Assessment of Need, hoping for the best.

"I was under this illusion initially that you got back the assessment report and then a letter to say 'we are looking at everything your son might need and then send your our service statement'." 

Mary was looking forward to the swift provision of speech and language therapy, and therapy on her son's legs, but the service statement and assessment report knocked her back, with no guarantee of speedy intervention and no likelihood of contact until June 2022 - almost 18 months later.

Mary, who is based in Munster, spoke to others similarly affected and to solicitor Eamonn Keane. It was a time of conflicting emotion.

"You don't want to rock the boat too much in case you cause friction for you or your child or your family," she says. 

But it did get to point that 'this is what I am going to have to do, I am going to have to go to court, I am going to have to fight it'.

"It is the most lonely road you can be on as a parent, when he can't verbalise, you have sleepless nights, you have parent guilt.

"My son really can't go to parties and things like that. I take him privately for services, I have no formal diagnosis, I think he has autism, I think he has cerebral palsy."

She said the court process was daunting and, at times, she questioned whether she had done the right thing.

As for the court process, she says: "It was well daunting. There were times when I felt I had to fight, I just have to keep going, and then there were times the solicitor would ring you and tell you something and you say 'Oh God, I feel sick, am I doing the right thing?

"But we did do the right thing."

The wait continues

There was a financial risk involved, and when the judgement was delivered, she recalls that she wept all the way home in the car. Yet despite its significance, the wait for services for her son, for the next steps, continues. Mary refers to a fantastic school nearby with an ASD unit, but says: "I have no formal diagnosis so my son's education is hanging in the balance."

And there is also the issue of the loss of time, that most precious of commodities when dealing with a child's development. Her own work, and those private interventions, have improved her son's verbalisation, but more needs to be done.

"I can only imagine, if the services were available through HSE, how much further on he would be be," she says.