'Your guilt as a parent is huge, relentless, that you’re not giving them what they need'

“I didn’t expect him to figure it out straight away,” she says. 

He was thrilled. Every child wants to belong, every human wants to belong. So for children with additional needs, to be on that pitch, to feel part of a team — it’s huge. 

The inclusive soccer group is run by parents and volunteers for children with additional needs. One volunteer encouraged Fionn up every time he flopped onto the ground.

“She was so encouraging,” says Emma. 

That’s what we all strive to do as teachers, as parents, to catch every child each time they fall and encourage them to keep going. But this same level of care is now almost completely lacking from Ireland’s State-funded children’s disability services, she says.

Fionn, 6, was “one of the lucky ones”. With a diagnosis of Down syndrome from birth, he was immediately linked in with local services which, although overstretched, were “fantastic”: 

“A child who has to wait for their diagnosis and assessment often ages out of early intervention before they get their diagnosis,” says Emma. “So we were one of the lucky ones.

“From the start, a nurse would come out to the house, she was our point of contact for two years. She was amazing. She’d do home visits every couple of weeks, she’d bring the physiotherapist or speech and language therapist with her, who’d work on feeding with Fionn. 

He had support and we had someone to phone if we had any questions.

“I thought this was standard practice until I met another mother with a baby with Down syndrome the same age as Fionn, and at five months, she had no input — nothing. Then I realised there was a stark difference between service providers.

“I thought it was a given that every baby with Down syndrome would need input like occupational therapy [OT], speech and language therapy [SLT], physiotherapy, for the rest of their lives. It’s predictable for the system. But this parent had nothing.”

The new HSE children’s disability services programme, Progressing Disability Services, sought to reorganise that system to achieve equitable access to services across the country.

“In theory, it’s great,” says Emma. “It used to be a postcode lottery.

“But now, many children are not getting any services at all. The system seems to be swamped in paperwork.

People working in the services are fantastic, they’re just getting lost behind all the paperwork. And our children are the ones suffering because of this organisational nightmare. 

"There are harrowing stories of parents crying out for interventions. We should not be pinning our hopes for OT, physio, SLT on charities like Down Syndrome Cork, but we are.

“With Fionn’s diagnosis, he will need OT, physio, SLT, [and] psychology forever. This is something that can be planned for. 

“When you get a diagnosis like that, you just want someone to take your hand and take charge. You have enough day-to-day worries, like checking that your child doesn’t choke when swallowing. Since PDS, he has had some help. He was put on a list for hydrotherapy and he had support boots. But he has no physio plan, no SLT plan, no OT plan.

Children with Down syndrome need intensive weekly, one-to-one sessions of speech and language therapy until they’re five. But we’re a million miles away from best practice in Ireland.

“And at least if you have Down syndrome, you fit in a box, it’s easier to get supports. But if you have a rare condition or no diagnosis yet, it’s much harder to get any help.”

Emma, who lives with her family in Ballinlough, Cork, says getting supports for Fionn is crucial.

“He gets very frustrated if he’s not understood. That’s why speech and language [therapy] is so important.

“He can pull your hair and pinch to get attention," she says. “It’s hard to know when he’s in pain. You have to read his behaviours. He can be a lot sicker or more injured than you think, and he can’t tell you or may be unaware of it, because he perceives pain differently.

“And getting him dressed can be a nightmare. 

He kicks out like a two-year-old, but with the body of a six-year-old. He wears splints to support his ankles and he needs physio to help with that. 

Budget 2022 committed €2.3bn for disability services. Minister of state for disabilities Anne Rabbitte recently said that 3% of this budget is going to therapy supports such as speech and language therapy, but she agreed with parents that even this does not seem to be trickling down to services.

Another problem with staff and therapy shortages may be the funding model for service providers, says Emma.

Many of Ireland’s disability services are provided through what are known as Section 39 organisations. These organisations receive grants from the State, but the workers are not classed as State employees. In Cork alone, these include hugely important and respected non-profit services like the Cork Association for Autism, Enable Ireland, and the Cope Foundation.

There has been growing concern over the years about talent flight from Section 39 organisations due to the more secure and better-paid work that people can get if they work directly for the State or in other organisations.

A September 2021 report by union Fórsa and researcher Brian Harvey found that some of these organisations are losing up to 33% of staff annually as workers move to the HSE or other State-funded organisations with better employment terms.

Although some disability services are provided directly by the HSE, others are funded by the HSE but provided through Section 39 organisations, or through Section 38 organisations, which have a long-running relationship with the State, receive direct funding from it, and whose staff are considered public-service employees.

Emma says she “pinned all her hopes for help” on when Fionn started school last September.

Although he was lucky to get a place at a “brilliant” school, St Paul’s in Montenotte in Cork, the physiotherapists, speech and language therapists, and occupational therapists were removed from the schools and redeployed into new teams under PDS when he joined.

“I thought he at least would have a physio in school. He wears splints so I thought he could at least check on his ankles and give him exercises for walking, that was all gone, same with speech and language therapists.“We’re pinning all our hopes on Fionn’s teacher, and she’s a teacher like me. In school, she’s trying to draw on all her experience to support him and us. And we’re not physios and OTs and speech and language therapists.”

Emma, a primary school teacher, says she has seen similar problems at mainstream schools — children arriving in desperate need of additional supports, but schools are lacking the resources to provide them.

“In school, we have children we know have needs, but they’re not getting assessed, they’re not getting all the supports they need, and they’re pinning all their hopes on school.

Parents are being told the resources are there through the schools, but they’re not.

“If a child joins in September with Down syndrome or autism or undiagnosed, the resources will have already been allocated from the previous September, so there will be no additional teaching supports for these children in schools where resources are already very stretched.”

Special needs assistants can be applied for every year, but even when a child needs an SNA, it can be hard to secure adequate care, she says.

A child could have huge toileting needs, huge sensory needs, but they will not automatically get an SNA. 

"They could get access to one — half an hour scheduled in the morning and evening. But their sensory needs can’t be predicted. I can’t say that at 11am they’ll need toileting or to be changed or need a movement break.

“It all comes down to funding. Just because your report said that your child needs an SNA or learning support, it doesn’t mean you’re going to get it.

“Fionn is a super child. But he’s non-verbal — he has no voice. Your guilt as a parent is huge, relentless, that you’re not giving them what they need.

“And what happens to them when you die? You just have to park that to get through the day-to-day worries.”