WE ASKED YOU, our readers, to share your stories of accessing services and supports for your children with additional needs.

We received a flood of responses.

Parent after parent told variations on the same story: that they are locked in an exhausting struggle for access to assessments, services and school places; that the State has failed to meet their children’s needs, leaving most with no option but to go private to the extent that they can afford to do so.

Heartbreak, frustration, regret and anxiety were among the feelings parents expressed, as they painted a picture of a broken system.

Our sincere thanks to everyone who got in touch. 

Here’s what you told us.

Waiting, waiting, waiting

“My son will be 10 this year. We have had no services from the HSE,” one woman living in Dublin told us. 

She first raised concerns about his development with the public health nurse when he was 18 months old.

His diagnosis of autism and his ‘assessment of need’ – a process set out in the 2005 Disability Act to identify what services are required to meet children’s needs – were not completed until he was four. He will have his first appointment with their local children’s disability network team (CDNT) next month.

Several parents of children of primary and even secondary school age told us that to date their children have received no services or therapy from their CDNT – services their assessment of need states they require and are entitled to – despite having been referred to the CDNT at three or four years of age.

“Even if I was to see the CDNT tomorrow, I know they don’t have a working psychologist nor speech and language nor working occupational therapist,” said one mother of a six-year-old diagnosed with autism at three.

“This is due to vacant posts. I am waiting on a service that isn’t functioning.”

She was one of many parents who said staff shortages and retention problems at their local services have hampered their children’s access to the support they need.

A woman living in Dublin said she received a letter last month from her local speech and language service “advising of a shortage of therapists in the area and that there are no services available to offer our son at this time”.

“This is almost two and a half years after he was placed on the waiting list. 

It feels as if these HSE services no longer exist; that they’re now the stuff of fantasy and fairytale and worried parents are following a yellow brick road to nowhere.

“Even to get some honesty from someone to say that the system has failed would put us out of our misery somewhat. Someone just needs to stand up and admit it.”

Another mother said after a three-year wait to access the CDNT for the first time last November, it transpired the service had no dietitian or speech therapist in their area. Her five-year-old son is autistic and has avoidant/restrictive food intake disorder (Arfid), a condition linked with autism.

“They have nothing to offer us. No therapies, no interventions, nothing,” she said.

Parents spoke of having to engage solicitors to force the HSE to complete assessments so their children can get onto waiting lists for services.

Two-tier system putting parents under huge financial strain

Readers’ stories paint a stark picture of a two-tier system for autistic children and other children with additional needs.

Families who can afford to do so are paying for private speech and language therapy, occupational therapy and psychology services – with many indicating they are putting themselves under enormous financial strain to do so.

The vast majority of parents who contacted us indicated they have paid out of pocket for services or assessments at some point in their child’s life – services and assessments their child is entitled to receive from the state.

Many families told us most – and in some cases all – of the therapies and assessments they have obtained for their children have been private, given long waiting lists for public services through the HSE.

Parents told us of paying out-0f-pocket for speech and language therapy sessions costing €80-100 each week or fortnight, or occupational therapy at €100-150 per session. Parents said the cost of these therapies adds up to thousands of euro over time.

A Waterford woman whose five-year-old daughter has Down Syndrome said apart from six months of physiotherapy, she has received no state-funded therapies. 

“Luckily our local branch of Down Syndrome Ireland helps us by subsidising private speech and language therapy and occupational therapy, without which we would be so lost,” she said.

Families are also paying for private assessments in the hope of unlocking access to public services their children should have access to. Costs of €1,800 and €2,3000 were cited for private autism assessments.

Sarah-Anne Connolly, a psychotherapist and play therapist working mostly with neurodivergent children, told us the majority of her clients have paid for private assessments because the waiting lists for public assessments are so long.

Families said they struggle to balance the cost of therapies their disabled child requires with creche fees, rent and the cost of activities for other children in the family whose needs they also have to meet. Some parents spoke of taking out loans to pay for therapies and assessments.

Parents indicated they received information in a piecemeal and haphazard fashion about financial supports to which they are entitled such as the carers’ tax credit, the domiciliary care allowance and medical card entitlement.

Several families told us one parent has had to give up work to support their child. 

“When I realised that no help was coming, I gave up my job and did the research and work to help his development as much as possible,” one mother of an autistic boy (9) who has not yet had an appointment with disability services told us.

“He is now thriving but like all autistic children, he still needs support in certain areas but that’s just never been available to him.”

Schools

Accessing suitable education for children with additional needs is a struggle – and some parents trying to do so have hit a brick wall. Many said the system of accessing special education feels like a lottery.

“We got into our special school thinking we’d won the lotto,” said one mother of a 13-year-old with an intellectual disability and significant autism.

“In reality it’s prefabs – no staff retention and a depressing, ghastly place. I want to change and there is so little hope of that.”

Parents spoke of applying to 15, 20 or 25 schools only to be refused by all of them.

Rebecca Meehan said her son Jay (5), who is autistic and pre-verbal, is one of 20 children who has not been offered a place in the only special school in Dungarvan, Co Waterford for this coming September. The school has already allocated the eight places it had available for the coming school year and is at capacity.

“We are not asking for special treatment, we are just asking that our children are treated the same as every other child in the country entitled to the highest standard of education to suit their needs,” Meehan said.

The Dáil heard earlier this month that the Department of Education will examine the potential for additional accommodation at St John’s Special School in Dungarvan.

Meehan’s case specifically was raised in Dáil this week by Sinn Fein’s Mary Lou McDonald, with Taoiseach Micheál Martin saying that number of special classes “has doubled in the last five years to 3,336″. 

“That is no consolation to Jay and the family involved there.  We will do everything we possibly can to get a place for that child for September 2025, and indeed for all the children waiting. That will be a very clear focus of the Government, particularly in the special education area, where investment continues and will have to continue,” Martin said.   

One Dublin mother told us of applying to and being refused by 26 schools – both mainstream and special classes – for her autistic son. Her son, now 10, got a place in a new ASD class that opened in a neighbouring town. Overall she feels his educational needs have not been met for several years.

Another woman, whose six-year-old is autistic, said she immediately rang the principal of a school in a nearby town when she heard they had been sanctioned to establish an autism class. 

“Our son was the fifth call she’d gotten that morning – the morning the news broke. The room was full by 11am, the six spots filled,” she recalls.

Parents also spoke of struggling to obtain suitable pre-school places.

A woman in Cork City said there is one pre-school within reasonable distance of her home tailored to her autistic son’s needs – but they do not have a place for him. Her son does not get the one-to-one support he needs in his current pre-school.

However, many parents spoke warmly of their children’s schools and teachers, with several saying pre-schools, schools, teachers and special needs assistants have been their biggest support and their children have settled in and are doing well.

A number of parents contrasted the support their children have received in school with the absence of help from the HSE.

One father of a 12-year-old boy with autism and developmental coordination disorder (commonly known as dyspraxia) said: “The school are amazing advocates and fight for our child’s entitlements within the school system.

The HSE services are non-existent.”

A Dublin woman whose seven-year-old autistic son is undertaking private speech and language therapy, as he is still on a waiting list for public services although he was diagnosed in 2021, said he is thriving in a mainstream class. He shares a special needs assistant with another child.

The school has been amazing. The special education teachers do so much work with him.

“The HSE is a joke.”

Exhaustion

Parents spoke of an exhausting ongoing battle to support their children and advocate for them within a system where it seems that every service has to be fought for tooth and nail.

Families of children with disabilities who have needed mental health services for self-harming said it has been a struggle to obtain the care their children need, even when these needs are acute.

Psychotherapist Sarah-Anne Connolly said many parents are left without support or guidance.

“Mental health issues and burnout then begins. It impacts on the whole family,” she said.

Several parents noted that waiting for services such as speech and language therapy through the public system means missing the critical window for early intervention. 

One mother of two autistic children, aged three and five, who have not received services through the CDNT or primary care, to which they have been referred, said: “We have been denied the opportunity for early intervention and it’s devastating.”

I will always wonder what potential was lost. We as their parents have done everything we can to provide the support they need, but they have been failed every step of the way.

“The worry we feel as parents is crushing; being denied basic services for your children is like being told they don’t matter.”

Parents spoke of looking back ruefully at their once held assumption that their children’s needs would be at least some way met by the State.

The mother of a 13-year-old with autism and an intellectual disability attending a special school said: “The struggle is unrelenting.” 

“I’m lucky I can advocate for my child but the amount of parents who can’t – mental illness, intellectual disability of their own.

“It’s a desperate, desperate scandal.”