The constant, stressful fight for special needs help

Sammi from Kidderminster said she has had to fight for her two children

Sammi describes herself as a "fighter".

In recent months, her evenings and weekends have been consumed by emails and phone calls.

All this to ensure her two sons, aged five and 12, get the special educational needs services that will help them thrive at school and home.

The family from Kidderminster is among hundreds digesting a joint Ofsted and Care Quality Commission report - published last week - which found widespread failings in provision for pupils with special educational needs and disabilities (SEND) in Worcestershire.

The authorities, including the local NHS, county council and Worcestershire Children First, say they are committed to reducing waiting times and providing better support for children and young people before they are formally assessed.

Sammi’s five-year-old Zach is autistic and has global developmental delay.

He has a place at a special school but Sammi says despite support from a number of health professionals, she has had a battle to get occupational therapy for him.

"Once they sent me the criteria, I spent several days cross-referencing and evidencing my son’s needs... chasing a service he undoubtedly needs.

"Once he was accepted... they came back and said he's on the list but there's a two-year wait.

"It's stressful, it affects my heath because it's constant stress having to fight for things for both children and obviously it impacts on quality family time."

Sammi said the situation had been made worse waiting for her 12-year-old son's Education, Health and Care Plan (EHCP).

Having applied on 14 February, the family said they finally had a response on 17 July, two weeks later than the legal limit.

Nor was it the conclusion they had been waiting for.

'It's like I'm the villain'

"It's something as a parent that you don't ever expect to have to chase," Sammi said.

"If your child needs a service, you expect it to be available to them. They haven't chosen to have additional needs.

"When I'm pushing back sometimes, it's almost like I'm being criticised or seen as the villain for a bit."

Sammi says she is not angry at those in Worcestershire delivering services but rather the national framework they are working in.

Arguably, Sammi's experience could be anywhere in the country - such are the pressures on a complex system relying on experts from health, education and social care backgrounds with swelling caseloads.

Zach's family said they were told there was a two-year wait for occupational therapy

In March, the previous government said it had committed £2.6bn to improve SEND services between 2022 and 2025.

Parent groups say it is not enough.

"There's a massive problem with diagnosis and assessment waiting times across the country - resources are very limited. There has not been enough money pumped in over the past decade and more," said Bernadette Louise, co-chair of Worcestershire Parent Carer Forum.

"We really need the government to understand that social care isn't just about safeguarding for one, it's actually an integral part of a child with a disability or a special educational need's make up. It's about social settings, relationships... it’s not about one size fits all."

The new government intends to brings forward a Children’s Wellbeing Bill in this Parliament.

It said it would "put children and their wellbeing at the centre of the education and children's social care systems, and make changes to ensure children are safe, healthy, happy and treated fairly".

There would be a requirement for schools to cooperate more with local authorities over places in particular.

Bernadette Louise said there were massive waiting time issues in the county

In Birmingham, the national pressures have been exacerbated by local ones with the very real risk of funding cuts to SEND services as a result of the city council’s financial predicament and its bid to make more than £300m of savings.

Here another "fighter" is stepping forward.

Laurence Turner says he was fortunate to have had good access to SEND services as he was growing up which allowed him to flourish.

A few weeks ago, he was elected as the new Labour MP for Birmingham Northfield.

'Harder to fight your corner'

"I was a SEND child, 25 years ago or more," he told the BBC.

"What I worry about is that far too many kids and families going through the system don't have access to that and it's a lot harder to fight your corner in a system than it used to be.

"Fixing each part of the chain is going to be [a] really tough task. We know there are real shortages in speech and language therapists... it can be very hard for a family to obtain a diagnosis."

Laurence Turner said solving the issues would be difficult

The MP points to official figures which show that between 2019 and 2022, 97% of tribunal appeals against decisions made about EHCPs in Birmingham were upheld.

"I think it's a problem of the system that local councils have legal responsibility for SEND, but there aren't enough duties on all schools in an area including academies to cooperate and work in good faith," he said.

The Local Government Association said it supported plans to "require all schools to cooperate with local authorities on SEND inclusion" but they added that "nothing short of fundamental reform is urgently needed".

Ten years on from the Children and Families Act, which promised reform of the system for disabled children and young people, there are calls once again for a fresh approach.

An effective and safe system is exactly what Sammi and other SEND families are seeking. They’re at a loss to understand how the system has become so complicated, and prone to delays.

"They need to see these children as important and at the moment they fall way down on their priority list," the mother-of-two said.