Fighting for Send children 'an emotional disaster'

Nikki Graham says having to fight for her two autistic children's education comes with constant anxiety

A mother who has two autistic children said the "nightmare" fight to secure them the correct educational support has proved a "disaster emotionally".

Nikki Graham spoke out after a survey found more than half of the 255 parents or carers of children with special educational needs and disabilities (Send) in Suffolk who took part said their own mental health had declined.

The 39-year-old, who lives near Bury St Edmunds, said her two children were now "in a good place" but annual assessments meant support could be withdrawn at any time.

"The children start to be treated as numbers or as cattle and it's a disaster emotionally - it all feels hopeless," she said.

The annual survey, carried out by the Suffolk Parent Carer Forum, strives to capture the experiences families have with education, health and mental health services.

This year's questionnaire featured new questions around wellbeing, asking parents and carers about their mental health.

Nikki Graham says fighting for the correct support for her children can feel 'hopeless'

Ms Graham's son Dillon, seven, and daughter Annie, four, were given placements at Pushforward, which is an "alternative setting" for students with special educational needs.

But, before that, the mother-of-three had been at loggerheads with the county council as she tried to explain that traditional schools were not suitable.

She said that, while her mental health had "stabilised" in the last 12 months after a three-year battle, it was "terrible" when she was trying to get them help.

"It's really hard when you're desperately trying to advocate for your children and so I had to be referred to mental health services.

"Do I keep my child at home with no education or do I send them to a school that cannot keep them safe? That's never going to be good for a parent's mental health.

"I don't trust Suffolk County Council not to do something stupid, so you're always living with that anxiety.

"But that would break our hearts because it would mean going back into the carnage and trying to force the council to fund [that support] again."

Claire Smith says it is 'upsetting' to see parents struggling with their mental health

'There have been big changes'

Claire Smith, chair of the forum, said the responses were "upsetting", with 142 participants - about 56% - saying their mental health had declined.

"That's a lot of people who are struggling, but a lot of things in the Send world seem to be a fight, and that really takes a lot out of a parent or carer," she told the BBC.

"When you are giving that level of care, it is very easy to self-neglect because you're putting all your energy into the person you are caring for."

Elsewhere in the survey 71 parents said they felt their children's needs were being met, while 75 said they were not.

They were also asked if they had seen any improvement in the education services their child accesses - 106 said no and 62 said they felt there had been a decline, but 76 said there had been an improvement.

Before the survey was conducted, Sarah-Jane Smedmor was named the new executive director for children and young people services at the council.

The appointment followed a report in early 2024 which was highly critical of the authority's special educational needs and disabilities services.

"There have been big changes and the right people are in post now," added Mrs Smith.

"But unfortunately those improvements are not being felt by families. We need that to happen really soon and see the benefits of those changes."

A spokesperson from the Local Area Send Partnership said: "We are working hard to ensure that all children and young people with additional needs receive the best and most timely support. This includes working with families to ensure they are kept informed.

"This support is provided by a range of agencies including health colleagues, schools and Suffolk County Council."

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