A Northern Ireland mum is continuing to shine a light on the lack of provision for post-19 special educational needs legislation. Currently, there is no legislation providing specialist care for adults with SEN after they turn 19.
Alma White (45) from Lisburn is on a mission to secure changes to the system through her campaign, Caleb's Cause NI. On March 12 at Stormont, a free Shine a Light music event will take place to raise awareness of the issue.
In England and Wales, provision for post-19 SEN legislation has been in place for years. Speaking about the issue, Alma said: “The truth is that when my son hits 19, he, and many young adults like him, will be forgotten by the system.
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"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. 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 services and support."
When Caleb reached the age of 17 recently, Alma started to think more about his future and decided to investigate what provisions were in place. She added: "My sister lives in London and her son (22), who is autistic, receives specialist care so I foolishly assumed we would have the same kind of support in place in Northern Ireland.
"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."
Alma is facing a stark reality that will not only affect her son, but also her husband Alistair (45) and their two daughters aged 18 and 14. She said: "Caleb needs constant supervision in every aspect of daily life and he is very vulnerable outside of our home. 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.”
Reflecting on the future of their family and what that means for Caleb's care, Alma continued: "My husband and I shouldn’t be wondering whether or not one of our deaths will create an untenable situation for the one left behind, or indeed for Caleb’s sisters. We want to know that laws will be put into place for him and so many others that deserve an equitable future.
“Young people with disabilities have dreams, hopes and aspirations. They have gifts and talents that they should be allowed to explore.”
Alma continues to raise awareness around Post-19 SEN including her campaign called Caleb's Cause NI. The group is seeking new legislation for post-19 SEN Northern Ireland including new care packages for young SEN adults over 19 years of age.
The group are holding an event on March 12 at Stormont to raise further awareness. Alma said: “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.
“On March 12, at Stormont Buildings, the first Shine a Light free music event will take place. We’re delighted to be assisted by Drake Music NI who will help us showcase the talents of our young people. Drake Music NI is a charity that provides access to independent music making for children and adults with complex disabilities.
“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.
“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”, concluded Alma.
The Shine a Light event takes place at Stormont on March 12th at 6pm and free tickets are available here Shine A Light Tickets, Wed, Mar 12, 2025 at 6:30 PM | Eventbrite. Show your support to Caleb online via #CalebsCauseNI. You can also sign the petition for CalebsCauseNI here https://chng.it/P4j6CgN7nH.
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