Education secretary talks about fighting to support nephew with Down syndrome | Special educational needs

Education Secretary Gillian Keegan described her family’s struggle to get adequate support for her nephew, who has Down’s syndrome, as the government prepares to publish its Special Educational Needs and Disability (SEND) improvement plan in England.

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

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

“Any family in the country that has someone with special educational needs will sometimes feel like they’re fighting the system,” Keegan said. “I’ve seen it with my own family as well. I have a nephew with Down syndrome and from the moment a child with special educational needs is born you know you need support.”

It is widely recognized that the sending system in England is in crisis due to increasing demand, chronic underfunding and service gaps. The number of complaints from parents has increased by three-quarters in the last four years, according to figures from the local government ombudsman, and councils have run up huge deficits in their sending budgets. Many children are out of school and regularly struggle to get the support they need.

The government has committed to ending the Send Postcode lottery and providing quality early support across the country. Ministers say investment in Send and alternative reserves will increase by more than 50% from 2019 to over £10bn by 2023-24.

Keegan said her nephew had a mixed experience with the system – there was an incident when he was in nursery where he broke his arm and no one noticed – but he also experienced many of the benefits of the Send system and secured places at good schools.

She also described her parents’ constant worry. “You’re worried about your health. What are the options for nursery places? What are the learning opportunities at school? What are you doing as a secondary? What do you do when you’re older, when you go to college and stuff like that? What are the options to ensure that your loved one, your young person, receives the absolute maximum support to do the most in their life?”

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

“He wasn’t having so much fun in nursery because he broke his arm and they didn’t notice. I think he has a pretty high pain threshold because he wasn’t really screaming in pain. It wasn’t such a great experience. Then he went to a wonderful public elementary school.

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

“But he got the place. So it takes place in a school that lasts until age 25, so that also includes college, so it’s in a good place. But what you notice all the time, you fight for it, you fight for support.”

Then there are all the other parental worries, she said. “You’re worried that he’s going to have a lot of friends and that he’s going to be able to hang out with friends, that he’s going to be able to learn life skills. What job options will he have? He wants to be a waiter or have something to do with a coffee shop, but how do you get these options and how do you make sure he is supported?

The Send improvement plan is expected to include supported apprenticeships for young people from Send and ‘adaptation passports’ to support them as they navigate the world of work. It is also expected to allay parents’ concerns about the proposals – previously set out in the Green Paper – to standardize the system across the country.

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