The education secretary, Gillian Keegan, has described her family’s battle to get the right support for her nephew, who has Down’s syndrome, as the government prepares to publish its improvement plan for special educational needs and disabilities (Send) in England.

In an exclusive interview with the Guardian, Keegan said the experiences of her 16-year-old nephew Joseph and his family had shown her first-hand how parents of children with Send have to fight every step of the way for the support they need.

The government’s long-awaited Send improvement plan is expected to be unveiled on Thursday, almost a year after the review was first published as part of a green paper consultation. It has since attracted thousands of responses, including from families struggling to negotiate the system.

“Every family in the country with anyone with special educational needs will have felt at times like they’re battling the system,” Keegan said. “I’ve seen that myself for my own family as well. I have a nephew with Down’s syndrome and from the very moment that you have a baby with special educational needs, you know that you need support.”

The Send system in England is generally recognised to be in crisis, due to rising demand, chronic underfunding and gaps in provision. The number of complaints from parents has risen by three-quarters in the past four years, according to figures from the local government ombudsman, and councils have built up huge deficits in their Send budgets. Many children are out of school and regularly struggle to get the support they need.

The government has pledged to end the Send postcode lottery, and provide high-quality, early support across the country. Ministers say investment in Send and alternative provision will increase by more than 50% compared with 2019 to over £10bn by 2023-24.

Keegan said her nephew had mixed experiences of the system – there was an incident when he was at nursery when he broke his arm and no one noticed – but he has also experienced some of the best the Send system has to offer and has secured places in good schools.

She also described the constant worry for parents. “You’re concerned about health. What are the options for nursery places? What are the options for schooling? What do you do for secondary? What do you do when you’re older, when you get into college and those kinds of things? What are the opportunities to make sure that your loved one, your young person, gets the absolute maximum support to do as much as they can in their life?”

Speaking during a visit to a special school for children and young people with autism and/or severe learning difficulties in Islington, north London, Keegan said she thought her nephew’s early experiences in nursery might have been improved by some of the proposals in the government’s Send plan.

“He did not have such a great time at nursery because he broke his arm and they didn’t notice. I think he has quite a high pain threshold because he wasn’t actually screaming in pain. That wasn’t such a great experience. Then he went to a wonderful mainstream primary school.

“But as he got a bit older, it was clear that potentially mainstream secondary school might not be the best place for him. So then my brother and sister-in-law had to battle the system, and it’s very worrying, because what are the alternatives if you don’t get the place?

“But he did get the place. So he has a place at a school that actually goes up to the age of 25, so it also includes a college, so he’s in a good spot. But what you notice all the time, you’re fighting for it, fighting for support.”

Then there are all the other parental worries, she said. “You worry about him having lots of friends and being able to see friends, being able to get life skills. What job options is he going to have? He wants to be a waiter, or something to do with a cafe, but how do you get those options and how do you make sure he’s supported?”

The Send improvement plan is expected to include provision for supported apprenticeships for young people with Send and “adjustment passports” to support them as they move into the world of work. It is also expected to address parental concerns about proposals – outlined earlier in the green paper – to standardise the system across the country.

The headline of this article was amended on 1 March 2023 to remove an incorrect reference to Gillian Keegan as the “UK” education secretary.


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