Son with complex needs being failed by system, says mum | UK News

The mother of a young Londonderry adult with complex needs has said the care system is failing him and many others his age.

Eoin Ward, 19, has a diagnosis of Down’s syndrome, autism, and ADHD (attention deficit hyperactivity disorder).

His mother Suzy, a former specialist and Emergency Department nurse, said he requires 24-hour care due to his complex needs and can at times present with challenging behaviours.

But she said her son, who can be lively and full of fun, has always made progress in environments that are “structured, age-appropriate, and where he is surrounded by peers”.

Eoin finished school at Knockavoe in Strabane in June and since then his mother explained he has been able to avail of some care, but she does not think it is enough.

Ms Ward told News NI that she thinks her son has “regressed”.

The Western Trust said that it cannot comment on individual cases, but it is aware of the family’s concerns.

The trust added that individual care plans are put in place to best suit the needs of the individual within the current services and funding available.

Eoin only sleeps for two hours a night and his mother said it is draining her during the day when she is caring for him.

“It’s very tough, it’s definitely tough. I feel exhausted. It’s really difficult,” she explained.

“When he was at school at least you had a couple of hours break.

“Maybe you could have met a friend for coffee. Now I can’t do that.

“Eoin is with me, by my side, all day, all night. So it’s definitely taken a toll on my mental health.”

Eoin was offered a day place by the Western Trust in a setting Suzy believes is primarily designed for elderly people, many of who are vulnerable.

She felt it was not suitable.

Having worked as a specialist nurse for the Western Trust for 30 years, Ms Ward said she is very familiar with carrying out risk assessments.

When she carried out one in the setting that was offered, she felt it was not safe for Eoin as many of the activities, in her view, were high risk of him choking.

She also felt the age of the other clients meant they would never be safe around Eoin when he became challenging.

Ms Ward said her son has always benefitted in places where he has been kept busy and where he has fun with his own age group.

When he was in school, Eoin had someone look after him on a one-to-one basis. Sometimes two due to his challenging behaviour, his mother said.

“Then all of a sudden they turn 19 and leave school and they don’t have the support anymore and they are just expected to go out into these places without support, which Eoin couldn’t cope with,” she said.

“I am doing everything I can as his parent to protect his wellbeing, and I cannot agree to a placement that I believe would put him or others at risk, or where he would regress.”

Ms Ward has called on politicians to enshrine a post-19 system in law where the requirements of young adults with complex needs are met.

“I think the system is broken and I think the system needs to change,” she said.

“They need to put more funding and more resources into the system for young people with learning disabilities. I really do feel we need post-19 legislation like they have in other parts of the UK.”

In England, by law, there has to be an education plan for young people with special needs after they leave school until the age of 25.

There is no such law in Northern Ireland.

The Western Health and Social Care Trust said it recognised the significant challenges for young people with learning disabilities and their families as they transition into adult services.

It said careful consideration is given to each individual service user by the multi-disciplinary team, highlighting the need for early, coordinated, and family-involved planning.

The trust added that following assessment by the team, individual care plans are put in place to best suit the needs of the individual service user within the current services and funding available within the trust.

“Due to patient confidentiality we are unable to comment on individuals. However we are aware of the concerns raised by the family and continue to engage with them.”