‘Rotting and stuck on a waiting list’

Families waiting on child therapies at 'breaking point'

“It just breaks my heart because, if he had got these services earlier, he could be so much better. He was rotting and stuck on a waiting list for two years and we had to get private services.”

These are the sentiments of a Shercock mother who continues to fight for services for her son who has special needs.

Figures published in this newspaper recently outlining public patient wait times for child therapies in Cavan and Monaghan, while stark, did not come as a surprise to many families like the Whitmarshes across the counties. Each number on the list represents a child who is waiting for an initial assessment or further therapy and, behind that child, there are exhausted parents or guardians.

The HSE figures to the end of 2024 revealed this region as a blackspot for delays in accessing therapies with thousands on waiting lists for therapies such as Speech and Language and Occupational Therapy. Hundreds have been waiting more than a year as the Children’s Disability Network Team (CDNT) in Cavan operates at around half its capacity due to job vacancies.

The Anglo-Celt spoke to some of these families who were willing to share their stories in order to highlight the issue.

One Shercock family ultimately resorted to the High Court in order to get the required services for their children, with the result of six private therapy sessions for their child starting next month.

At the age of three years, Finn loved to watch movies and recited song lyrics from his favourite movie ‘Trolls’ while watching.

“He could sing every song in playschool but Finn couldn’t speak to you,” his mother Linda Whitmarsh told the Celt.

“And he still babbles now.”

Now aged eleven, Finn is a “great reader” and loves to read books for his own age level. His mum and dad Linda and Ronan admire his ability to get on happily with life despite living with Cystic Fibrosis, which sees him on forty different medications per day, as well as being autistic and having a mild intellectual disability.

Living with a severe medical condition and additional needs, his parents can’t understand how he does not have access to the required services. Any time Finn speaks is a joy for his parents, however just recently on the way to Temple Street, holding his Kevin the Minion toy, he told his mam “I am very scared”.

“He can talk, I just need the help to unlock what’s in there and get him to talk.”

Finn is with the Children’s Disability Network Team (CDNT), which is under Enable Ireland; while their other son Liam (13) is in primary care for dyspraxia.

“Finn would be very, very complex,” Linda said adding that her son “has a lot of care needs”.

“You can’t have a functional conversation with Finn,” she said, describing how her son will only respond with a ‘yes’ or a ‘no’. He sometimes adds that he has had a ‘good day’ or a ‘bad day’.

Last year, Finn was admitted to hospital with bacteria in his lungs seeing him in hospital for a full month. In April, he required another hospital stay.

“Because he has medical and the additional needs, you would expect that he would get a bit more support,” fumed Linda.

Upon turning six, their child moved to the care of the CDNT and has been under the care of Enable Ireland for the past five years.

When they first noticed characteristics, the family tried to get an assessment of need. However, they were refused because Finn played well with his brothers. A private assessment at the age of four determined that Finn had autism and a mild intellectual disability.

At the time, the family weren’t aware that they needed a HSE assessment of need, which is something they require in order to get services from the state. The first HSE assessment they received was in 2022, which stated that their son needs “consistent” Speech and Language and Occupational Therapy.

The family estimate that, so far, they have spent €15,000 on private services, and Linda, a devoted nurse, has had to take a career break in order to care for her son. The family has now been forced to stop private therapy and rely solely on the services provided by the HSE.

“Which is nothing really,” she surmised.

“You’re fighting to get an assessment of need, you get the diagnosis and then there’s nothing,” added Linda.

Four years in, now aged eight, the family had heard nothing from the CDNT in relation to their son, which is when they started to make contact.

“We can’t tell you where he is, he’s just a number,” is the response they received.,

“Now this child at this stage was non-speaking. He would only talk to me. He has a speech device now and an AAC device.”

“It just breaks my heart because, if he had of got these services earlier, he could be so much better. He was rotting and stuck on a waiting list, completely ignored for two years and we had to get private services.”

Both Linda and her husband Ronan have exhausted the avenues to try and get help; they have contacted all of their local politicians and senators, they have addressed the Disability Matters Committee in the Senate, and have spoken with the top people within Enable Ireland and the HSE.

The pair set up the Cavan Monaghan Parents Committee in 2022 in a bid to bring awareness to other families in similar situations, a campaign they have recently had to take a break from due to their son’s health. They then sought to change the Disability Act to state that “you need services in a timely manner”.

“We don’t have that in our Disability Act, we have ‘you’re entitled to an assessment of need’.”

Bundles of papers, folders and email correspondence lie on the Whitmarsh kitchen table; they have kept a record of everything, down to the detail of each phone call they received from the service and every complaint submitted to Enable Ireland, some of which, they say, took a year for a response.

“All I want for Finn is to be happy and have an independent life, but it doesn’t look that way because Finn has never really had any services to speak of,” Linda tells the Celt.

“If you’re having unmet needs, you’re going to turn into an adult who’s actually dependent on the state. If you’re getting the help and all the assistance when you’re younger, early intervention, as an adult you’re not going to need the service as much. But these kids are just sitting waiting on lists and nothing is happening.”

The first sign of Finn receiving the services he required came about after an appearance on local radio in May 2022.

“It shouldn’t be that you have to go out and air your dirty laundry and plead and tell everyone your personal life and your children’s struggles. That’s the only way you seem to get help in this country, which is so wrong.

“These are the most vulnerable kids in society and they should be getting the help now and they’re not.

“I have gone to CDNT, I’ve gone to TDs, I’ve met with everyone and then I had to go to court.

“As a parent, I have to fight because I’m his little voice.”

After meeting with government ministers, the family got Occupation Therapy assistance and Speech & Language assistance.

“Things still haven’t got any better and everyone is aware of it.

“Everything is a fight when you’ve children with additional needs. You know the way they say it takes a village to raise a child? When you have a child with a disability, your village shrinks; and when you’re not getting help from the services when you should be, it’s soul destroying.

“What’s going to happen when I die? Where is he going to go? Is he going to go into a nursing home? Is he going to go into a psychiatric unit? Where is Finn going to go? Will they know to open the curtains for him at night? Will they care for him the way I do?

“If he got this help sooner, would I have a different child? Would I have a child who is able to talk? Time is the most precious thing and this is what children are losing when they are in the CDNT.”

Meanwhile the Shercock mother describes the service statement, which shows what the child is entitled to and what they have received, as a “work of fiction”.

For example the most recent statement points out that Finn has had Speech and Language Therapy in school.

“Which looks great on paper but it doesn’t say that Finn has had a Speech and Language review in 2021, which is five years ago and nothing since.”

In the last five years, Linda says Finn has received three one-to-one therapy sessions, which contradict service statements and Dáil responses they’ve received in the past.

“This is what’s happening to every parent, they’re documenting phone calls and they’re putting phone calls down as engagement but that’s not true engagement for their child.

“It feels like you’re being gas lit.”

The last time the family addressed Minister Anne Rabbitte, former Junior Minister for Disability, and the CEO of Enable Ireland John O’Sullivan was July 4, 2024.

They left feeling frustrated and dissatisfied.

Finn’s father Ronan described the experience as “a war of attrition”.

Following that exchange the Whitmarshes concluded: “We can’t do this anymore.”

Linda summed up their feeling: “I can’t keep banging my head off a brick wall. We’re not getting anywhere; everyone’s aware of the situation and no one is willing to change anything and it’s getting worse.”

It was then that the family decided to go to their solicitor, which was quite an easy process and they had already gone through the HSE complaints process numerous times and kept a record of all their correspondence. The family took their case for lack of services to the High Court, the ruling of which “shows that the assessment of need has been let down in different areas”.

The six private sessions for their son are due to begin next month.

“I am actually getting help now, but six sessions, six weeks of help does not equate for five years of being ignored and neglected. It doesn’t make up for it,” said Linda, adding that she expects she will have to go back to her solicitor when the session run out.

“Parents are fighting for crumbs. This is not enough for a child that’s not speaking, who’s eleven, who’s got medical needs. None of the kids are getting sufficient care and it’s falling back on us as parents.

“Because we went to the High Court, we’re getting more help now than we ever got in the last five years, which is crazy,” she said, adding that Finn is currently seeing an Occupational Therapist as of March.

“It’s not enough but I’m happy because it’s better than what we had been getting and it’s better than what other people are getting, but it’s crumbs.”

Heartbreak in Belturbet

Meanwhile in Belturbet, Serena Dawson’s eldest son Nathan was diagnosed with autism in October 2020. They have had four one-to-one appointments, with the last one taking place in September 2021.

She criticised how Enable Ireland and the CDNT are providing courses for parents and are logging these courses as “interventions for children”.

“They could ring me and they’re putting that down as intervention,” she furthered.

She told the Celt how Enable Ireland have logged that seven-year-old Nathan has had 42 appointments.

“They’re putting down an email as interventions, telephone calls and they’re counting these courses.

“Parent courses aren’t specific to any child,” she said.

The mother of three said the service statements she received makes “liars out of us parents” listing how the 12-page long statement she received has recorded phone calls, emails and parent’s courses as interventions.

“It makes us then look like liars because we’re trying to fight for services for our children.”

Her youngest son Dara, is also under the care of the CDNT. He was diagnosed with autism and global development delay in April 2024 and has yet to be seen by an Occupational Therapist. He has been in a feeding clinic and also another one to try and get an AAC device.

So far, Serena says they have got “nothing” and are left trying to figure out what three-year-old Dara, who is non-verbal, is trying to express to them.

“He’s had no one-to-one Speech & Language Therapy or OT,” she explained.

Cody, who turns five next month, is under a Primary Care team and is also waiting for SLT and OT. In September 2024, they were given a wait time of three years for OT and “in the excess of” two years for SLT, psychology is 36 months and physio was 50 weeks. The family are awaiting an assessment for Cody.

“It’s such a massive thing because at the end of the day we’re not speech and language therapists or occupational therapists. We have to do as much research as we can to help and try and figure out a way of helping our children.

“It’s so heartbreaking to see our children sitting on waiting lists and needing this support and they need it now. Early intervention is the most important thing when it comes to children with disabilities and the sad reality of it is there is no such thing.”

Asked what can be done to alleviate the situation, Serena said therapists need to be encouraged to stay in the country. The family have tried to go down the private route and cannot get a therapist in Cavan, Monaghan, Meath, Leitrim, Sligo and Fermanagh.

“Something big has to change because, when you can’t even access these services privately, we have a massive problem.

“As a parent watching their child struggle in every day life it’s absolutely heartbreaking.”

“It’s an absolute crisis, it is a crisis now and it’s actually got worse over the last years. It’s getting worse rather than better and I don’t understand how it has been let get this bad.”

Serena highly praised Cavan Autism Parents Support (CAPS) for the help they provide to parents, describing them as “absolutely amazing.”

Stressed in Cavan Town

Rachel Kearns from Cavan Town also spoke to the Celt on what her family is experiencing. Seven-year-old Keelan has had no therapies to date. He was diagnosed with autism and just this year he was also diagnosed with a moderate intellectual disability. Keelan is pre-verbal and has sensory processing disorder.

Enable Ireland took Keelan on in 2020, and the family has not had any therapies since. Now going into second class, the family has learned just this year that he is not in the right school and should be in a specialist school like The Holy Family School in Cootehill. Despite applying there for the next academic year, there was not enough places for Keelan.

On top of this, in 2022, a High Court ruling revealed that some assessments of needs were not carried out properly.

“Keelan was one of them,” she explained.

“After everything we’d gone through, his assessment of need wasn’t even right so now this year we’re only starting to go through his assessment of need.”

This process is still ongoing, one that has left his mother feeling “stressed” and “devastated”.

Paying for private therapies costs €80 for half an hour. Their initial private assessment cost €2,000, with a follow up assessment costing around €800, with four of these for Keelan paid for privately. Rachel says they have spent “thousands and thousands”.

“The only thing they did help us with was the assessment of need and then to find out that was even done wrong, it was just really hard to take in. They didn’t offer any support and we were just left in the dark then.”

Rachel says she has also been “fighting” with Enable Ireland for an AAC device, which she was refused until she got the help of a local TD, which is something that infuriated her.

“The parents’ voice wasn’t heard but a TD can ring up and they can listen to them.

“Everything has been a fight,” she added.

They have now gone a year and a half without a speech therapist, as the one they were working with has gone on maternity leave and then “stopped doing it”.

“I’m basically his speech therapist now.

“Our daily life is affected from the minute we get up to the minute we go to sleep and, unless we pay for it privately, we have nothing.”

Meanwhile, Rachel’s four-year-old son Kaizer was diagnosed with autism in June 2023 and they say they have heard “nothing” since.

Neither child has had a one-to-one therapy session, except for a one-to-one physio appointment which is “the only thing” that is not needed.

“I’ve done every single workshop there is but nothing aimed at either child or the difficulties that we’re facing or anything like that.

“I think there needs to be a huge overhaul; most families are a breaking point.

“If we need help we have nowhere to go, no one to ask.”

“This organisation that takes the kids and diagnoses them, I would say there is a huge group of kids that have never set foot in that building, that they have never seen.”

Parents are exhausted

Speaking to The Anglo-Celt Senator Pauline Tully has stated that she is contacted on an ongoing basis by parents who cannot access vital supports for their children, which would permit them to flourish in life.

“Parents are exhausted having to fight for supports that should be provided either through Primary Care or for those with more complex needs through the Children’s Disability Network teams (CDNT).

“The waiting lists for services are continuing to grow and the government does not have a plan to address this. The children have a right to supports and services, which will help them thrive in the future but, without them, we will see the children with additional needs today become the dependent adults of the future. Children’s basic human rights are being denied.”

The Sinn Fein senator further revealed: “The CDNT in Cavan which should be providing supports to those with more complex needs is operating at a 48% vacancy rate according to the CDNT Workforce Report 2024 complied by the HSE.

“Very few children have received services there. We have a scenario where the team is counting phone calls and emails to parents as contact with the child. Some children have never even been met by the team; this is not good enough,” she stated.

Enable Ireland has been contacted in relation to waiting times and vacancy rates in the service generally; although it will not comment on specific cases.