A North Clare child with extra needs is going to have to spend an additional 18 months without receiving any meaningful treatment, because his condition has been deemed to be more serious than initially thought.
Two and a half year old Jack Linnane has communication difficulties which may be connected to another, as yet undiagnosed, condition.
These issues were discovered more than a year ago and he was referred into the HSE Community Healthcare system for speech and language therapy, which has a waiting list of six months.
However, Jack was also accepted to the Children’s Disability Network Team (CDNT) for an assessment. The current waiting list for the CDNT is between 18 months and two year, and by being accepted into this programme, he was removed from the community healthcare waiting list.
Jack’s mother, Deirdre Linnane, says that her son is developing a number of additional difficulties because of his problems with speech, and now suffers massive meltdowns which can be dangerous to himself and those around him.
“We went from a waiting list of over six months, which wasn’t acceptable, to a new waiting list which could be 18 months to 24 months. I don’t know why they can’t work together. If he could have stayed on the first waiting list he would be in their getting help right now,” Deirdre Linnane told The Clare Champion.
“We need Jack to be able to communicate, he doesn’t need to talk.
“We just need a way to communicate so that we can help him and help to bring him along.
“We are just hitting wall after wall after wall. We were left with nothing. Nobody was talking to us or doing anything.”
When Jack wasn’t able to speak when he turned 16 months, he was referred by the local public health nurse to the public health doctor. He saw the public health doctor when he was 18 months, and this doctor advised waiting until he turned two years old to investigate further.
When he turned two, he was referred to the Children’s Disability Network Team (CDNT) and to the HSE Community Healthcare, Speech and Language.
While Jack has been waiting for treatment, his condition has continued to worsen.
“It was the time of the local elections [March, 2024 ]and everyone was coming to the door promising us this, that and the other, and nothing ever came of it. We were putting all of our energy into Jack, but that was too hard. We knew we needed outside help,” said Deirdre.
“I took a 20 second video of Jack having one of his severe meltdown and I sent it to Cathal Crowe [Fianna Fáil TD] and I told him that enough was enough, he [Jack] didn’t deserve to be left and deserved helped.
“I sent that on a Sunday and within two days we had a phone call from CDNT to say that we were going to get our initial visit the following week. We were pushed up the list because we complained to a politician. We skipped a load of people along the way I would imagine.”
Jack was assessed by the CDNT in July of this year. After the assessment, Deirdre was told that Jack was on all the waiting lists but the waiting list for an autism assessment was 30 months and the waiting list for speech and language assessment was 24 months.
In addition to this, Deirdre and her partner were signed up for a number of “workshops” which were supposed to help them to care for Jack.
“We were called for the sensory skills workshop which was basically a 30-minute YouTube video and then a zoom call, with a load of other families, where you have to talk about all of your private business. That is your workshop. It was no help whatsoever,” she said.
“Early intervention is key in these situations and I know it will be for Jack. If we get Jack communicating, we probably won’t need any of these other services in a couple of years. I think he is high functioning, but the longer he goes without help, the worse he is getting.
“It now looks like we need an OT [occupational therapist] intervention. We need help with his food. If we could get Jack talking, we could get to the bottom of all of this ourselves.
“If we could get the one service that we want, we wouldn’t be putting pressure on everything else. We’d be a number off the list.
“I have found a company who will do an autism assessment for us, I have asked the HSE to pay for it but they have refused to pay for it. But they are telling me that the reason that the waiting list is so long for autism assessments is that there is an unavailability of suitably qualified, private, assessors. But they are there, they are all over the country.
“It happens, I have had it done myself. The government paid for a [private] surgery that I needed because the public waiting list was too long. They asked me to go private. I can’t see the difference.
“What is the difference between me and my child? There is a service there that my child needs, why isn’t he getting it?”
Life for Deirdre and her family is getting more difficult the longer Jack goes without any meaningful treatment.
“You are walking on egg shells. The meltdowns are horrific, the tole it takes on his body.
“The day we took the video to send to Cathal Crowe, we were coming down from Dublin and we had to stop to change his clothes because he had soaked all of them with sweat because he was so upset. He could be screaming and crying for two hours, it could go on for five hours,” said Deirdre.
“Jack doesn’t eat anymore. He might eat cereal or pick at a few grapes, but to get a full meal into Jack is next to impossible. It’s just hard.
“He is the loveliest boy ever, he has a gorgeous personality, but it’s hard. I am completely drained from it. We are living in fear. We are questioning everything we do, what if we do something different and it leads to a meltdown.
“We have another son too and this affects him. He is coming home from school and nine times out of ten he is walking into a meltdown.
“It is stress all the time and we are trying our best to do the best for him.
“Why couldn’t he [Jack] have stayed in the Primary Care System where there was a place for him, albeit after six to eight months?
“Why can’t the CDNT work side-by-side with the Primary Care System? Six months is already a long time to wait but it is a hell of a lot better than two years. He was in that system already, why did they take him out? Why aren’t they all working together?”
In a statement, HSE mid-West said that they cannot comment on individual cases, but did speak generally about the situation.
“There is a growing demand for Children’s’ Disability Services in the Mid-West and we have seen a 21% increase in new referrals over the past three years,” said a spokesperson.
“There are significant challenges at this time for Children’s Disability Network Teams (CDNTs) to achieve the level, quality and types of service that we want to provide. Some of these challenges include reduced staff resourcing issues coupled with the increased demand for our services.
“There are currently more than 100 children between the ages of 0-9 years on the waiting list for an Autism assessment in Clare. The HSE apologises to service users and their families who are experiencing these long waits.
“An additional senior psychologist has commenced on the East Clare Team, which will help address the wait times, and there are a number of current vacant posts going through the recruitment process, including a Speech and Language Therapist.
“CDNTs continue to work in partnership with families and the wider community, as per the Progressing Disability Services Model.
“The delivery of services to our service users and families does not have to wait for an autism assessment to be completed. There are a number of Service Users who, while awaiting an autism assessment, receive services from the CDNTs which work towards achieving goals as agreed with the child and their family.
“Typically, the family and the CDNT focus on what is uniquely important to the individual child and their family, and work to achieve those prioritised goals. This requires family involvement in the identification and measurement of achievements. The service focuses on the delivery of the right mix of universal, targeted and individual supports for each child to reach their full potential.”
Andrew Hamilton is a journalist, investigative reporter and podcaster who has been working in the media in Ireland for the past 20 years. His areas of special interest include the environment, mental health and politics.