A Coleraine mother, who says her disabled daughter ‘no longer has a voice’ since she left school, has been lending her support to a campaign at Stormont.

Tracey Henry and her 22-year-old daughter Ellie attended the Stormont gathering on March 14 with other parents, pupils with Special Educational Needs (SEN) and school principals. Education Minister Paul Givan was also in attendance.

Tracey said that Ellie’s quality of life had deteriorated since leaving her special school. In England, a plan is made for the educational, health and care welfare of a person with SEN until the age of 25, however, no such provision exists in Northern Ireland.

Speaking to BBC Northern Ireland, Tracey said: "As soon as Ellie left school, there's no opportunity to do anything else, unless we do the things for her.

22-year-old Ellie Henry who joined her mother Tracey at Stormont to lobby for continued services for adults with SEN post-school years. Credit Tracey Henry

placeholder image — 22-year-old Ellie Henry who joined her mother Tracey at Stormont to lobby for continued services for adults with SEN post-school years. Credit Tracey Henry

"We had one day in a day centre, we now have three days in a day centre, but there's a big difference between what she did in school where she was active, she was happy, she did lots and lots of different activities," she said.

"They need to bring in legislation similar to what they have in the UK to allow children like Ellie the right to do activities, the right to have their own life.

"She doesn’t have a voice any more.”

Coleraine woman Tracey is also campaigning for legislation to authorise and facilitate appropriate training for home carers in directed nursing tasks.

Coleraine woman Tracey Henry with her daughter Ellie. CREDIT UTV

In 2024, Tracey said that her family was ‘at breaking point’ after health trust changes meant that Ellie’s care assistant was no longer allowed to carry out nursing tasks.

Ellie has to be fed and receive medication through a tube (peg) almost every hour of the day.

Speaking last year, Tracey said: "So every 90 minutes to two hours a day, I have to be here 24/7 to do this as there’s no nursing staff available,” said Tracey, who also has another daughter.

"I'm on the verge of another nervous breakdown as I can't cope. I only try to do my best for the girls and put them above my needs always.”

In August last year, Tracey also started a petition calling for a change in the law to allow carers to carry out essential treatment.

The petition says: “In the interest of maintaining the highest quality of care for our loved ones, we demand that all Health Service Trusts within Northern Ireland amend their Direct Payment/Self Directed Care legislation and in turn the 2002 legislation.

"They must require home carers to be suitably trained by the trust to perform specified nursing tasks within their current roles, ensuring that health and social care needs are fully met within the Direct Payment budget.

"Enforcing this legislation would not only improve health outcomes for those who depend on home care but would also alleviate the immense pressure on families who currently bear the brunt of this system's shortcomings. It will also cost much less than employing a nurse whose services are in high demand nationally.”

The petition, which has gained almost 20,000 signatures, also says: “By signing this petition, you support the call for legislative action to authorize and facilitate appropriate training for home carers in directed nursing tasks, ensuring every individual in need receives the comprehensive, skilled care they deserve.

"And giving families and individuals the right to chose who they have care for them, the time that the care takes place and the freedom to travel and have days out with their own care staff.”

Tracey said she will continue to gather signatures and lobby politicians to push for legislative action.