Parents in Northern Ireland with children who have special educational needs are “beyond crisis point” and face an “endless fight” to secure necessary support, a campaigning mother has told MLAs.
Alma White from Lisburn spoke of her concerns for her 16-year-old son Caleb when he reaches 19 and no longer has a legal right to access educational support, training or employment.
Ms White and other parents in similar situations are campaigning for legislation that would put in place education, health and care plans for children beyond the age of 19.
Alma White giving evidence to the Economy Committee (NI Assembly/PA)
In England, there are provisions for such plans up to the age of 25.
Stormont Economy Minister Conor Murphy has set up a task force within his department to examine ways to improve SEN (special educational needs) provision for young adults.
Ms White gave evidence to the Assembly Economy Committee on Wednesday to highlight her campaign, Caleb’s Cause NI, and told committee members about what life was like for children and young people with SEN and their families.
Ms White said: “It’s a journey of pain, sacrifice and guilt, but also a journey with the strongest forces of love, laughter, joy and protection for the ones that we love.”
“That’s what drives us. We are forced to arm ourselves with knowledge to try and fight a system that is set up to fail us. We have no pathway, no road map, no guidance.
“We fight for assessments we don’t want to face. We fight for school placements that are too few. We fight for services that are too stretched. We fight for transition plans that don’t exist.
“And I’m here with you today, fighting, once again, for something that should already be in place.
“Northern Ireland is beyond crisis point for families who have a child or young person with special educational needs. We are in a constant state of waiting, hoping, more waiting, more hoping.
“Our children and young people always seem to be at the back of the queue, we despair often and are led to push doors open that just lead to new doors with no answers.
“My son, Caleb, is 16 and I can honestly say the fight is endless. I didn’t intend to start a campaign, but Caleb’s Cause NI was born from sheer desperation for not only my son’s future but the future of thousands of families across Northern Ireland.
“I never imagined putting my life on screen, or my son or my family, but I have no choice. That is the theme of today. We have no choice.”
Ms White said children who have statements of SEN for schools become “invisible” when they reach 19 and their entitlements to that added support fall away.
“Their needs grow as they enter adulthood and yet their support is drastically reduced,” she said.
“Education and health and care plans would provide an umbrella for a number of areas, such as further education, training, apprenticeships, health and social care benefits – the list goes on.”
She added: “The transition from child to adult services and all the steps that I need to take as a parent for his future remain a minefield.
“This journey is endless. The worry is endless. The options are few. There are charities that try to fill the gap but my son doesn’t always fit the box of what’s offered and that terrifies me.
“We have very little say and so we spend a lifetime fighting for the needs of our precious children and young people.”
Ms White said legislation was important because the first services to suffer in times of change and cutbacks are the ones that are not underpinned by law.
“We are desperate and I am sitting here today not asking but pleading with you to do the right thing as an executive,” she said.
“As a committee, I ask you to apply pressure to the minister. As much as I appreciate his desire to help, we want to know are our children and young people a priority in the eyes of the law?
“I also sit here as a messenger for many families and their precious loved ones – you have the opportunity to create a legacy to change the course of the future of young people with disabilities.
“No more excuses, no more strategies or consultations.”