Parents of children with ALN share 'soul-destroying' reality of their fight for support

• Video report by ITV Cymru Wales reporter Kate Lewis. Words by ITV Wales producer Katie Sands.

Exhausting, isolating and soul-destroying: that is how parents of children with additional learning needs describe the daily battle they face to try and ensure their families can thrive.

Families have told ITV Cymru Wales there are significant gaps in education and childcare provision for their children, while a damning report on the sector in Wales has exposed major shortcomings.

Meanwhile, an exclusive poll of parents of children with ALN found that half of respondents in Wales said their child had had to take time out of school because their needs could not be met. Of those, 17% said their child had been out of school for between a month and a year. 

These figures come off the back of the publication of a damning Senedd report which found that:

• A significant number of children and young people’s right to an education is being denied throughout Wales, while inclusive childcare is not accessible to all.

• Families are often "on their knees" having to fight for basic rights which others take for granted.

• Those seeking to access Welsh-language provision and those living in rural areas face additional challenges.

• For some families, these struggles mean that parents and carers cannot work.

For many, this is the everyday reality of fighting to try and ensure their child has the best possible start to life.

• 'My daughter's not valued like other children'

Rebecca Davies is a teacher, but has been forced to take the difficult decision to give up work to care for her three-year-old daughter with ALN because there's no room for her in their local special school.

Rebecca Davies, mum to Maggie and Millie, has paused her 10-year teaching career indefinitely because of what she says is a lack of support for parents of children with ALN.

Daughter Millie, who turns four this year, is autistic and has global developmental delay and severe learning difficulties.

"She's lush, she's gorgeous," her mum says. "She's the most loving little girl. She's cheeky. She loves a thrill. She's absolutely brilliant."

Millie technically has a place at Ysgol Heol Goffa, a school in Llanelli for children with complex needs, but has no start date because the school has no more room.

Rebecca says the process of trying to get the appropriate education provision for her daughter has been "horrendous" and "heartbreaking".

• Rebecca Davies has had to give up her job as a teacher because there is no room at the local special school for her four-year-old autistic daughter, Millie.

"I've had to finish my career, a 10-year teaching career, because there is no support," Rebecca told ITV Cymru Wales.

"Until you're in the situation it's impossible to understand. My children come before everything, but it's been horrendous.

"I feel Millie's not valued like other children and that's heartbreaking as a parent. I've got one neurotypical child who's thriving in a Welsh mainstream school, and I've got Millie who is waiting.

"It feels like a full-time job for me. Since finishing teaching, I'm working harder now advocating for her, supporting her and trying to get what she deserves, which is the bare minimum.

"It's children's right to have an education. Why shouldn't she have what every other child has?"

Carmarthenshire Council said in a statement that a review of the current ALN specialist provision in Llanelli will begin in the autumn.

Read Rebecca's full story here.

• 'Just because our son has got ALN, we shouldn't have to fight'

Almost 40 miles away, Chloe and Craig Boulton tell a similar story.

Their son Gabriel, who turns five in September, missed out on his first year of school because of what his parents viewed as a lack of inclusive options to best suit him.

The couple from Aberdare refused to put their son, who is autistic, into mainstream school as they felt a lack of specialised provision could have caused him to regress.

Instead, they paid for him to attend two private creches for a year while his place at a special school was finalised after his Individual Development Plan (IDP) was completed, a process the family claim was "too long-winded".

Every child who is identified as having ALN by a Welsh local authority must have a statutory IDP which should include additional learning provision (ALP) agreed by health services, social services and other services, including education.

Mum Chloe told ITV Cymru Wales: "It was probably one of the most challenging times of our lives. It was so distressing, we felt in the dark, felt like you were fighting for something that should have be a given right to your child: the right to an education.

"Just because he's got additional learning needs, he shouldn't have to fight.

"They said we needed to put his name down for a mainstream education provision, but as his carers we felt that wouldn't be meeting his needs and he would actually regress.

"So we decided to pay privately for our own education provision in two creche settings, and kept him out (of school) for a year.

"For that year, he should have been in a provision. Because of his additional needs, we had to wait.

"He couldn't go into that mainstream setting. It would have set him back. It would have been dangerous, actually. It's not fair on him or the class teacher."

Gabriel started school in September 2023 when he was aged four.

"He's where he needs to be now but that hasn't come without probably the worst two years of my life," Chloe said.

Read Craig and Chloe's full story here.

• 'People are so unaware of the struggles'

• Betsan Gower Gallagher's seven-year-old twins Brielle and Bowann are both autistic, but their mum says the struggles in securing the appropriate childcare provision for them is "exhausting".

It's not just education provision which is lacking: it's also childcare.

Local authorities have a duty to, as far is reasonably practical, secure provision of childcare that is sufficient to meet the needs of families in their area so they can work or take up education and training. They are expected to assess the local childcare market to develop a "realistic and robust" picture of parents' current and future needs for childcare, according to the Senedd committee's report, and are expected to identify what can be done to address gaps in provision.

Betsan Gower Gallagher's seven-year-old twins Brielle and Bowann are both autistic.

"They're like fireworks," she said. "They are full of joy and full of excitement and sheer delight.

"But also there's a big bang. They're amazing, but they do have complex needs and needs which need to be met."

Betsan, from the Swansea Valley, is relieved her children are at the "perfect" school for them, but says childcare is a major issue, with inclusive one-to-one private childcare for her twins forecast to cost around £1,000 per week.

"I can't send my children to any nursery," she said. "There are no childcare settings that will accept them. And there needs to be something because the school that my children go to, there's 120 children there who could all do with childcare.

"People are so unaware of the struggles - it's exhausting and hard work, the paperwork is ridiculous, the phone calls back and forth, it's absolutely soul-destroying

"There just needs to be more support. I feel so angry and emotional about it."

Neath Port Talbot Council said it understands Betsan's concerns, it endeavours to ensure the needs of children with complex needs are met within a specialist provision, and it is committed to working with families to mitigate against challenges they face.

Read Betsan's full story here.

• Is there equal access to school and childcare?

No: that was the finding from the Senedd's Children, Young People and Education Committee who released their report on 16 July after a year-long probe.

It deemed that access to school was not consistently equal across Wales, with examples of good practice patchy. The report said: "Too often, it is too dependent on individual staff or families working hard. There is no way of making sure it happens across Wales."

Schools and local authorities not having enough money or staff and a lack of understanding of certain conditions are among the reasons cited.

The committee also found there was not equal access to childcare at the moment, with long-distance travel often required, and not enough being done to fill the gaps in inclusive childcare.

Committee chair Buffy Williams MS told ITV Cymru Wales that two of the biggest issues were funding and staff training.

"It's almost like we're failing the most vulnerable children in our society by not ensuring that they have an equal playing field where education is concerned," she said.

"It does feel like that we have a significant amount of children in Wales that are being failed and forgotten about.

"It is definitely a postcode lottery. We need to be doing more and we need to be doing better."

• 'This shouldn't be happening in this day and age in Wales'

Children's Commissioner for Wales Rocío Cifuentes told ITV Cymru Wales: "Children have a basic, fundamental right to education regardless of their needs and this government really needs to step up to the plate and deliver.

"In this day and age in Wales, this shouldn't be happening.

"There isn't the support, there isn't the provision, it can be a postcode lottery, and it just shouldn't be such a struggle for something as basic as education.

"We want these children to learn and flourish and be independent, successful adults, and that is much better for all of our futures."

• What does the Welsh Government say?

A Welsh Government spokesperson said: "Our national mission commits to breaking down barriers for all learners. Since 2020, we have invested more than £107million to support the implementation of our ALN reforms.

"The Flying Start childcare expansion has increased the numbers of two-year-olds who can access funded quality childcare, and created opportunities for children to be supported with ALN before they start early years education at three years old."

Welsh Conservative shadow minister for education Tom Giffard MS said: "The Labour Welsh Government is creating a lost generation of young people through their damaging cuts to education.

"School budgets have been slashed by Labour, not just in real terms, but in cash terms too, which has a knock-on effect on adequate ALN provision.

"The Welsh Conservatives would scrap Labour and Plaid’s plans for more politicians in the Senedd, because we’d rather see taxpayers’ money spent on more teachers in our classrooms instead."

Plaid Cymru’s education spokesperson Cefin Campbell MS said too many children are being excluded or marginalised through no fault of their own, and is calling for more ALN training plus the recruitment and financial support for schools to do so.

"With long waits for diagnosis, we must support schools to take a pupil-centred approach from the off," he said.

"There are currently too many children and young people who are not in school currently because schools are not able to meet their needs. This is having a long-term effect on the child but also it's having a huge strain on parents.

"There is also currently a lack of resources in the Welsh language, and there have been many cases highlighted to Plaid Cymru where the language of the home has been changed to adapt to the education of the child. This should not have to be the case.

"We must ensure that all children receive the support and the best possible start in life through our education system, but currently there is inconsistency throughout Wales. We cannot allow for this postcode lottery to continue, we must support every child and young person in a way that understands their needs."

The Welsh Local Government Association (WLGA) declined to comment.