Special needs: 'It's soul-destroying to have to watch your daughter get worse’

Mary Riddell’s daughter Dakota, now nine, was born at 24 weeks and has been diagnosed with a number of conditions including cerebral palsy, epilepsy and learning delay.

“She’s a warrior,” says Riddell. “She’s fantastic. She just gets on with everything and takes it all on the chin.” But just as Dakota has had to battle for life, so her mother has battled to get the right educational support for her.

Dakota initially went to a mainstream primary school and had full-time one-to-one support. “That lady left,” says her mother, “ and she got part-time one-to-one. As she progressed through the school that one-to-one support disappeared, but her needs remained the same.”

Riddell found an alternative place at a specialist academy where Dakota is now thriving, but says she has had to fight every step of the way. “It took an awful lot of work and an awful lot of chasing to get her into the SEND [special educational needs and disabilities] school.”

Now she is having to chase her local authority in Birmingham to update Dakota’s education, health and care plan (EHCP) which guarantees the provision she needs, otherwise she may lose it.

Riddell is also facing delays of up to two years for an autism assessment and occupational therapy for Dakota. “There’s not enough bodies to keep up with demand,” she says. And in another setback, at the start of term Dakota lost her chaperone on the journey to school – the chaperone has since been reinstated, but not without strenuous lobbying from Riddell.

She has had to give up her job in hotel management and says looking after Dakota and her interests is a full-time role. “It’s very, very stressful. I feel like a personal assistant – you are chasing up that many professionals all the time.”

Over the past couple of years, Riddell has become so concerned about the crisis in SEND provision she has put her name to a legal action against the education secretary, Damian Hinds, and the chancellor of the exchequer, Philip Hammond, accusing them of failing to discharge their legal duties relating to the amount of funding allocated to SEND provision in England.

“There’s not enough funding coming down from the top,” she said. “I’m not very politically minded, but it’s soul-destroying to have to watch your daughter get worse, when there are people who can help but you can’t get appointments with them because they are so busy and they are stretched so thin.”

‘They failed him consistently for three years’

Cinzia Proctor’s son Leo is 11 and has autism, among other diagnoses. He began his education in mainstream school with additional support, but it soon became clear he needed a specialist school place.

Like most parents of children with SEND, his mother feels she has had to fight every inch of the way to secure the support her child is entitled to. She has appealed to the special needs tribunal on two occasions, costing her £20,000, and has had to complain to the local government and social care ombudsman three times about Leo’s support.

In her first complaint in 2016, the ombudsman found that delays in finalising Leo’s statement of special educational needs meant he had to be home educated for seven months and did not receive the support he needed for social development for two terms.

The following year the ombudsman upheld a complaint that Kirklees council in West Yorkshire failed to provide the occupational and speech and language therapy to which Leo was entitled. The family contacted the ombudsman for a third time this year to complain that some of Leo’s additional support was still not in place.

The ombudsman Michael King said of Leo’s case: “This continual and repeated failure by Kirklees council to provide this boy with support has had a significant, cumulative effect on his education.

“At no time since 2015 has the boy had all the support he needs, and this has led to the mother losing faith in the council and the support it will offer her son both now and in the future.”

“They failed him consistently for three years,” said Proctor. “It’s left me feeling scared that the people who are supposed to be looking out for children are not. It’s a national problem. It’s honestly getting to crisis levels. The funding is being cut constantly.

“It’s shameful that there are laws in place that are supposed to be protecting families, yet we have to legally challenge what’s essentially your legal right,” said Proctor. “It’s entirely finance based. It’s not taking into account the needs of any child.”

The ombudsman said the council had since agreed to review its procedures used to monitor and ensure the delivery of special educational provision.