Young people with SEN treated as 'price tag', says mum

Young people with Special Educational Needs (SEN) leaving school are treated as a "price tag", according to the mother of an autistic teenager.

Alma White appeared at Stormont's Education Committee with her son Caleb; she was one of a number of women who spoke to MLAs about the transition from school to adult care in Northern Ireland.

In a presentation, the mothers said that move for young people with SEN was "unclear" and "fractured".

Health Minister Mike Nesbitt has previously said that there was not time to change the law to offer statutory post-school support before the next assembly elections in May 2027.

Karen Ryan whose 17-year-old daughter, Emily, has profound needs, also spoke to MLAs.

Emily is non-verbal, tube-fed and is a wheelchair user who attends Parkview Special School in Lisburn.

"The opportunities available to neurotypical school leavers aged 18 are second to none in Northern Ireland," Ryan said.

"The opportunities to our SEN young people are none."

Alma and Caleb White have spoken a number of times about the need for a plan to help young people with SEN move into further education or training.

Caleb White read MLAs a poem about the "daily battle" he and other young people went through.

"Not because they lack a dream but because the world is not as fair as it seems," he said.

What concerns do Karen Ryan and Alma White have?

The mothers said that families were confronted with many difficulties when their child with SEN reached the age to leave school, including a lack of joined-up collaboration between health trusts, and between the education and health departments.

In England, an Education, Health and Care plan (EHCP) outlines a young person's special educational needs up to the age of 25 but in Northern Ireland, no such plan is in place.

White and a number of other parents have campaigned for a similar education plan to be in place in Northern Ireland, that would provide a statutory pathway for them to enter further education or training.

In answer to a question from the Sinn Féin MLA Pat Sheehan, White said she felt support "all comes down to money".

"I speak to parents all the time, we feel like our children are a price tag," she said.

She said that was "really difficult."

"I'm telling you now in three or four years you're going to triple that cost if you don't get a handle on this."

Why are IQ tests important?

Ryan said that distinction between disability and difficulty could be crucial to access support when a young person left school.

An IQ of more than 70 can mean that young people with SEN cannot access disability services as an adult.

Back in 2010, a report published by Autism NI with Ulster University highlighted that the IQ threshold of 70 remained "a barrier to services for many families".

Ryan said that meant that young people with a learning difficulty who already had a statement of SEN had to pass an IQ test to get access to adult disability services.

If their IQ is assessed to be more than 70 then they are not judged to have a learning disability.

Ryan told MLAs about the case of an autistic teenager with challenging behaviours and "significant social and emotional support needs".

"Although he has a high IQ, he requires daily adult support to manage anxiety, regulate behaviour and remain safe," she said.

She said that he was "not considered to have a learning disability because his IQ assessment scored just four points above the qualifying threshhold of 70."

"As a result he falls into a gap where he is considered too able for some services yet not independent enough to cope without substantial support."

White said that she had to prove that Caleb had a learning disability "having been in special school since he was three with complex needs".

"I can't emphasize enough how awful the process is to not know what's coming next," she said.

What happens when school ends?

"Why would all of this be put in place simply for it to be stopped at age 19?" she asked.

"Health and social care intervene for life, education needs to be in place until at least 25."