Northern Ireland Mothers Tell Stormont Committee SEN Young People Treated as "Price Tag"

Young people with Special Educational Needs (SEN) leaving school are viewed as a "price tag," according to Alma White, mother of an autistic teenager. Appearing before Stormont's Education Committee with her son Caleb, Ms White was among several mothers who addressed MLAs on the challenging transition from school to adult care in Northern Ireland.

During their presentation, the mothers described this move for SEN young people as "unclear" and "fractured." Health Minister Mike Nesbitt has previously stated that there is insufficient time to amend legislation for statutory post-school support before the May 2027 assembly elections.

Karen Ryan, whose 17-year-old daughter, Emily, has profound needs, also spoke. Emily, who is non-verbal, tube-fed, and a wheelchair user, attends Parkview Special School in Lisburn. Ms Ryan observed, "The opportunities available to neurotypical school leavers aged 18 are second to none in Northern Ireland. The opportunities to our SEN young people are none."

Both Alma and Caleb White have repeatedly advocated for a structured plan to assist SEN young people in accessing further education or training. Caleb White read a poem to MLAs, detailing the "daily battle" he and his peers face, asserting, "Not because they lack a dream but because the world is not as fair as it seems."

Systemic Failings and IQ Threshold Barriers

The mothers highlighted numerous difficulties families encounter when their SEN child leaves school, including a notable absence of collaboration between health trusts and across education and health departments. Unlike England, where an Education, Health and Care Plan (EHCP) outlines a young person's special educational needs up to the age of 25, no equivalent statutory plan exists in Northern Ireland.

Responding to Sinn Féin MLA Pat Sheehan, Ms White stated that support "all comes down to money." She explained, "I speak to parents all the time, we feel like our children are a price tag," adding that failing to address this issue would see costs "triple" within "three or four years."

Ms Ryan underscored the critical distinction between disability and difficulty for accessing post-school support. An IQ exceeding 70 can prevent young people with SEN from accessing adult disability services. A 2010 report by Autism NI and Ulster University previously identified this IQ threshold as "a barrier to services for many families."

This means young people with a learning difficulty, who already possess a statement of SEN, must pass an IQ test to qualify for adult disability services. If their IQ is assessed above 70, they are not deemed to have a learning disability.

Ms Ryan cited the case of an autistic teenager with challenging behaviours and significant support needs. Despite a high IQ, he requires daily adult assistance for anxiety management, behaviour regulation, and safety, yet is "not considered to have a learning disability because his IQ assessment scored just four points above the qualifying threshold of 70." Consequently, he is "too able for some services yet not independent enough to cope without substantial support."

Ms White recounted having to prove Caleb had a learning disability "having been in special school since he was three with complex needs." She stressed the "incredibly anxiety-inducing" nature of the process for parents, arguing, "This would not happen to grammar school pupils. It's a lack of equity that has existed for decades."

Ms Ryan detailed the comprehensive support and opportunities Emily receives at her special school, much of it funded by parental fundraising, including various therapies and dedicated facilities. She questioned, "Why would all of this be put in place simply for it to be stopped at age 19? Health and social care intervene for life, education needs to be in place until at least 25."