Distressed Laois mother fighting for son's care

A LAOIS mother has been left in the dark seeking an Assessment of Need for her son, whom she suspects may be autistic.

The woman, who wishes to remain anonymous out of concern for her son, first noticed a difference in her child when he was about three or four. He would have extreme reactions to different stimuli.

“We noticed changes in him that weren't quite normal and his behaviour, especially to sensory things, was very off; loud noises, sirens, different smells”, she says.

Her son can mask his behaviour, she says, but sometimes he cannot.  “When we're out in public, he may have a meltdown. Sometimes we know why, sometimes we don't know why, and quite often we have to leave the area that we're in.” 

Leaving an area could mean lifting her son, who will turn 10 this year. “It's obviously getting harder to lift him up. He's stronger than me, nearly.” 

Two years ago, the Laois mother submitted a form looking for an Assessment of Need for her son to obtain an official diagnosis. She found out last year that the form had been processed incorrectly, meaning her son had been waiting 18 months on the wrong list.

She was informed that the wait time could not be backdated. They had to begin anew. This meant a 24-month wait from the time she reapplied.

This is not the only issue the Laois mother has faced while seeking care for her son. When he was younger, he was diagnosed with hypermobility syndrome. He has had to use a special chair designed to accommodate his needs.

The chair needs to be remeasured every year. “There is currently no primary school [occupational therapist] in Laois. Last year there was no Primary OT to come out and do it.” The Laois woman reached out to an occupational therapy team she had worked with previously and “borrowed” an OT from a different sector to come in and measure the chair.

More than anything the Laois mother needs a diagnosis for her son, she says.

“When he has a meltdown, he's embarrassed, he's sad … He asks, ‘why do I do this, mammy?’ … I can't say ‘I think you're autistic’, because there's no formal diagnosis. I go to my GP, or I contact the OT services, and I say, ‘we need help’, and they say ‘what's your diagnosis?’ … They can't treat a child without a diagnosis”.

She has described feeling emotionally exhausted while trying “to keep above water at home, emotionally”.

“I'm sick of trying to fight for his rights so that he can be assessed to see how we should best care for him. You feel like you have to constantly fight for your child … because the government are not helping in any way”.

Brian Stanley, Independent TD for Laois, considers the lack of support this Laois mother is facing part of a wider trend in the Laois region.

“There has been a lack of therapy services in general in Laois going back a decade”, he says.

“It's in primary care, the child disability network teams, and teams that deal with children with autism, dyspraxia and ADHD … Children with special needs. This has been an ongoing problem.” “There are now [no OTs] at all for primary care”, he says.

Deputy Stanley shared with the Laois Nationalist a letter from the HSE, which he received because of questions submitted to the Minister for Health.

“Unfortunately, there are currently no Children’s and Young Persons Primary Care Occupational Therapy services Laois/Offaly”, the letter reads.

The letter goes on to state that recruitment of a children’s and young person’s Occupational Therapist is “amongst the highest priority posts put forward for the networks in Laois and Offaly”, but to date the HSE does “not have approval to recruit”.

The HSE cannot hire until approval is granted. The letter also states that there are four paediatric OT roles left vacant in the region.

“Wherever this is getting blocked, it needs to be unblocked”, says Deputy Stanley.

He believes the process of recruitment within the HSE is a slow one. “When the HSE is recruiting… They interview people, they put them on a panel. People get told that they’re going to be recruited. That can take 6 or 7 months.

“You have a young person who's qualified waiting. Meanwhile, they see an opportunity either abroad or in private healthcare, and the next thing they're gone”.

Deputy Stanley considers Laois “a black spot” due to its lack of care services for young people.

In response to the Laois Nationalist’s queries, the HSE confirmed that “approval of post(s) and recruitment of a Children’s and Young Persons Occupational Therapist is currently a priority for the Midlands Integrated Health Area”.

The statement continues: “The HSE regrets that any child would have to wait to access care and is committed to delivering efficient, high-quality services for all patients and service users.” The development of youth services and increasing access are key priorities of the 2026 National Service Plan, says the HSE.

The HSE also states that several new measures are in development, including a single point of access for Disability Services, Child and Adolescent Mental Health Services (CAMHS) and Primary Care services for children.

The HSE claims that this will “improve integration, flow and ensure access to the right care at the right time”, and that 11 new In-Reach teams will be established to integrate support across these services. The HSE hopes that this will build to 20 teams in 2027, alongside the recruitment of 202 additional staff.

The statement continues: “The HSE will deliver the joint Department of Health / HSE Programmatic Approach to Primary Care Therapy Waiting Lists, committed to removing 60,000 people from primary care therapy waiting lists.

“This approach includes the application of a capacity planning methodology to primary care therapies and the digitalisation of primary care activity and scheduling. Applying this approach will reduce the maximum wait time for physiotherapy, occupational therapy and speech and language therapy.”