ALMA White from Belfast is a mum on a mission since discovering that her teenage son Caleb, who has special educational needs, is facing an uncertain future once he turns 19.
Northern Ireland currently has no legislation providing specialist care for adults with special educational needs (SEN) after the age of 19.
In England and Wales, support continues until the age of 25.
“The truth is that when my son hits 19, he, and many young adults like him, will be forgotten by the system,” explains Alma (45), who also has two teenage daughters.
“Bewildered parents will be left to try and find solutions for their children with no real hope of getting governmental support. Let that sink in.
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“No parent who has a child with additional needs should have to face the loneliness and fear of that reality.
“In England and Wales, Post-19 SEN legislation has been in place for many years. I would like to know why Northern Ireland is not offering the same rights to its young adults.
“There are a huge number of young people with disabilities leaving school each year and we want our government to create legislation that will give them rights to serves and support.”
When Caleb reached the age of 17, Alma started to think more about his future and decided to investigate what provisions were in place.
“My sister lives in London and her son, who is 22 and autistic, receives specialist care - so I foolishly assumed we would have the same kind of support in place in Northern Ireland.
My sister lives in London and her son, who is 22 and autistic, receives specialist care - so I foolishly assumed we would have the same kind of support in place in Northern Ireland
— Alma White
“It was jolting to discover that there is very little in the way of specialist care available. We found out that when a statement of special educational needs ends, there is nothing to replace it.
“We’re lucky to have some wonderful charities who try and bridge the gap and we are thankful to them but it’s not their job, they’re already stretched.”
The revelation led Alma to launch the Caleb’s Cause NI campaign to highlight that the north urgently needs to achieve parity of Post-19 SEN legislation with Britain.
“Caleb’s Cause NI is a Facebook page where families can support our campaign, find out about events and help push our government to implement change for all young people with disabilities."
Thank you @niexecutive for your support and attending our event. This is a HUGE moment for our campaign. We will continue to fight until legislation is in place 🙂@EqualityCommNI #CalebsCauseNI #Hope 💙@moneillsf @little_pengelly https://t.co/0slLcgiT1O
— CalebsCauseNI (Alma White) (@CalebsCauseNI) November 19, 2024
Alma is facing a stark reality that will not only affect her son, but also her husband Alistair and their two daughters.
“Caleb needs constant supervision in every aspect of daily life and he is very vulnerable outside of our home,” she explains.
“This impacts everything about our lives including having a job. What employer would let you come and go when needed?
“It’s genuinely terrifying for us and for thousands of families like us in Northern Ireland.
“Caleb is somewhat lucky as my husband and I are relatively young, but the uncertainty of the future is always on our minds.
“Some young people with disabilities have parents with significant health conditions coupled with the ever-present stress of not being able to access appropriate services for their young people.
“It’s heartbreaking and soul destroying when you start looking for help only to discover that it doesn’t exist.”
For those who would like to show their support for the Caleb’s Cause campaign, a special event has been organised for next month at Stormont.
“On March 12 at Stormont the first Shine a Light free music event will take place,” explains Alma.
“We’re delighted to be assisted by Drake Music NI, a charity that provides access to independent music making for children and adults with complex disabilities, who will help us showcase the talents of our young people.
“The Shine a Light event includes performances from special schools and will be a night of celebration which demonstrates that when the right support is in place, a lot can be achieved.”
Alma adds: “My son and so many others matter. When Caleb was born I promised I would always protect him, that I would be his voice.
“He and so many others across Northern Ireland deserve more and that’s why I, and thousands like me, will never give up fighting for what’s right.”
Shine a Light takes place at Stormont on March 12 at 6pm. Free tickets are available here. Show your support to Caleb online via #CalebsCauseNI. You can also sign the petition for CalebsCauseNI here.
