‘We’re going to become prisoners in our own home’ - Derry mother's fear over lack of post-19 SEN support
A Derry mother whose son has complex disabilities has spoken of how she feels they are both about to become ‘prisoners’ in their own home due to the absence of post-19 support for families in their situation in Northern Ireland.
Suzy Ward said that it breaks her heart that her son Eoin - who has Down’s syndrome, Autism and Attention deficit hyperactivity disorder (ADHD) and is non-verbal – and thousands of other young adults were being treated differently because their complex needs.
Suzy is among the many local families backing a growing campaign to secure post-19 special educational needs legislation and provision. Caleb’s Cause was initiated by Alma White after she learned that there is currently no legislation providing legal protection for young people like her son Caleb with Special Educational Needs who have disabilities in Northern Ireland beyond the age of 19, in contrast to England and Wales.
This has meant that thousands of children and young adults with complex special needs who need additional support to enable them to partake in social, educational and many other aspects of life are at risk of, and in numerous cases have already experienced, tailored statutory supports ending abruptly. For many of them it has meant they are confined to home as they enter adulthood. And this is now the reality facing Eoin and his mother when he finishes school at Knockavoe, Strabane and turns 19 in two months’ time.
Suzy, who gave up her career as an Accident & Emergency nurse at Derry's Altnagelvin Hospital to look after her son at their Culmore home, said: “They start the transition process at the age of 15 so it is not that they didn’t know Eoin wasn’t going to be coming through the system. And there is no plan for him, no placement for him. I have been trying with everybody to get some support because what is going to happen is Eoin and myself are going to become prisoners in this house.
"It’s so frustrating, so soul destroying to think that they think Eoin’s life does not matter as much. He deserves to have a fulfilled life, to have opportunities, to be with his peers. Eoin is a very busy wee man, he loves the craic, he loves to be out and about, he loves walking and swimming. Because of his condition his brain never stops. If he gets bored, the challenging behaviour kicks in. Eoin can be aggressive, sometimes very aggressive when there are triggers. He sleeps only a few hours and I can see me becoming exhausted and not able to do those things with him if I am up with him all day and all night and there is no respite.”
Suzy said there are a lot of different places in Derry for young people with disabilities, but unless a young person has a certain level of independence, they are off limits as carers there cannot help with personal care, meal times, toileting.
"Eoin needs assistance with all his activities. The only ones he can access are ones run by the Western Trust and they are at a full capacity and we are on waiting lists. It’s nearly like he is being discriminated against because his needs are more complex. All these other young people have services they can use but if your needs are complex it is like, ‘sorry we can’t meet those needs’.
"It’s as if his life isn’t as important as a person who can do a little bit more of him. I just feel Eoin is being so let down by the system. When I see all the other kids who are higher functioning and I see them all out and about the town and carers, and they seem so happy, I think, ‘Oh my God, why can’t my son access that?’ Because his needs are more complex. And that just makes me very sad.”
Suzy also worries about the impact the lack of provision will have on not just Eoin’s mental and physical wellbeing health but also her own, and the impact it will have on her other son, who is 22 and has autism, and her daughter.
"I’m absolutely petrified about what is going to happen. When I do the two months in the summer time when Eoin is off school, I am burnt out by September and I am ready for him to go back to school in September. Now it’s as if I am going to have a lifetime of summer holidays with Eoin and we are going to become prisoners in this house.”
"And Eoin doesn’t want to be with me all day every day. he needs to have a centre, a base where he can go, where he has an individual plan and activities and things to do. And there’s just nothing.”
The one support offered to families is direct payments via the Western Trust. But like other families, Suzy said this then results in the relatives having to become employers and trainers with no guarantee the person employed to deliver 1-1 support will stay with their loved one, something she has already experienced.
“I then become an employer. I have to employ the staff, train them, which I have done before for three or four months and they last a week. I need to be mammy, carer, not an employer. It might work for some families but it needs to be assessed on an individual basis.”
There has also been talk of using agency staff to come for a few hours a day. “To me,” Suzy said however, “that is not safe. Eoin has challenging behaviour and can be aggressive. If somebody different is coming to the house to take him out, it is going to take them a good year to get used to his needs and the way things are done, so sending agency staff won’t work.”
Suzy praised Alma White and said Caleb’s Cause was "so, so important”, reiterating that there needs to be some legislation in place to ensure services are there for young adults with complex needs when they leave school.
“There are so many families in this situation and more coming through the system.”
"At the moment”, Suzy adds, “I feel like we are just sitting on a cliff edge and it is just scary.”
People can support the campaign by joining Caleb’s Cause NI Facebook page and by signing the petition at: https://chng.it/P4j6CgN7nH