Son with complex needs being failed by 'broken' system

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

Eoin Ward, 19, has diagnoses of Down's syndrome, autism and ADHD (attention deficit hyperactivity disorder) - and requires 24-hour care.

He has been offered a day place by the Western Trust in a setting his mother believes is primarily designed for elderly people.

The Western Trust said it could not comment on individual cases, but it was 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.

Ms Ward, a former Emergency Department nurse, told BBC News NI that Eoin can at times present with challenging behaviours.

But she said her son, who can be lively and full of fun, had always made progress in environments that were "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 had been able to avail of some care, but she did not think it was enough.

Ms Ward said she thinks her son has "regressed".

Suzy Ward says her son Eoin can be lively and full of fun

'Really difficult'

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."

Since leaving school in June, Eoin's mum thinks he has "regressed"

Ms Ward feels the day place offered to Eoin by the Western Trust is not suitable.

Having worked as a specialist nurse for the Western Trust for 30 years, she said she was 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.

Eoin requires 24-hour care due to his complex needs

Ms Ward said her son had always benefitted in places where he has been kept busy and where he had 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."

'System needs to change'

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."