The National Autistic Society has launched a new campaign, ‘Forgotten Voices’, which is calling on government leaders in Northern Ireland to provide immediate access to short breaks and residential care for families in crisis.
The calls come following a new BBC Spotlight programme, ‘I Am Not Okay’, which showcases how some families of children who are autistic and/or have a learning disability are struggling with violent outbursts which often leave them injured. Despite this, these families are all struggling to access support, with little to no respite care provided by their local trust.
Some of the families have turned to residential care, but each were told there were no placements available in Northern Ireland and were asked to consider placements in other parts of the UK or the Republic of Ireland. This comes at a huge cost to the public purse (up to £20,000 per week) and makes it very difficult for these families to visit their loved one.
Tara Mills follows four mothers, Julie, Carly, Laura and Claire, over a period of months to see how this challenging behaviour is affecting their lives.
The programme first features Danny who was diagnosed with autism when he was three years old. Danny can become anxious and frustrated, and when he is really distressed, he can hurt his mother Claire. During the programme, we see one of Danny’s outbursts in which he attacks his mother, pulling her hair and smashing household objects.
“He pulls me by the hair to the floor and literally drags me about like a ragdoll… He pulls out clumps of my hair… It’s just getting harder to manage,” Claire said.
Julie’s son Theo is also prone to violent outbursts. Theo was diagnosed with autism when he was four, and Julie says his behaviour is “unpredictable”. He has thrown household objects through windows, turned on all the gas burners in the middle of the night and he has flooded the house on multiple occasions. Julie and her family try to keep Theo calm and provide him with reassurance, but when he is really distressed, she says he can “really hurt you.”
Theo is entitled to two nights of respite care from his local NHS trust every month, but this is rarely provided. When it was once offered, Julie received a call on the second day in saying the staff could not cope with him. The trust responsible for Theo’s care said it is very sorry that it is unable to offer overnight breaks, but that the trust is currently exploring ways of reintroducing them.
Theo’s respite has now permanently broken down and Julie is seeking residential care for her son. “This is something I’ve never wanted to do… but I’ve always been very fearful that’s how things would end up. We’re always in crisis, but being in such a state of crisis that I’ve just given up… that’s a horrible place for a mother to be,” she said.
Laura, Carly and Rita also spoke about their children’s challenging behaviour, but these families are also struggling to access respite care and support from their local NHS trust. Rita Orr got to the point where she was so desperate for help, she dropped her son Callum off at school one day and did not return to pick him up. He was taken into emergency care, but the trust recently told Rita her son may be transferred to an out of area placement.
The trust which is responsible for Callum’s care says it cannot comment on the case.
Shirelle Stewart, Director of the National Autistic Society Northern Ireland, says autistic children and young people with high support needs are being “failed” by Northern Ireland’s health and social care system, with many families being pushed to “crisis point”.
“As highlighted by the BBC’s Spotlight programme ‘I Am Not Okay’, those impacted include autistic children and young people many of whom do not use speech and need round-the-clock support. Without it, they might become incredibly distressed, leading to harm to themselves or others.
“Families can be pushed to the brink, trying to fill in the gaps of support and are being denied access to short breaks because no places are available. The health and social care system should support any autistic child when they need it. But there is a comprehensive failure of the system to give these children and their families support,” she said.
“We believe the Department of Health and the Health and Social Care Trusts are failing in their duty of care to these children, young people and their families. They have failed to plan and commission appropriate services and the most vulnerable in our society are forgotten,” she added.
The National Autistic Society NI is now working alongside families affected by violent outbursts, and the charity has launched a petition to run alongside the campaign which calls for improved support services. In addition, the charity is campaigning for resources to commission services which support autistic people with high support needs and their families, such as short breaks and residential placements.
These services are vital for families, as Carly, who features in the programme explains: “Respite is irreplaceable, it’s priceless – the ability to do family things such as going out for meals… the chance to recharge batteries, the gift of being able to have a sound night’s sleep… the simple things that people take for granted.
“As a family, we have been emotionally, mentally and physically damaged for almost ten years by a litany of failings by the system. The system that has a duty of care to our family to provide adequate support and respite services.”
Health Minister Mike Nesbitt told BBC Spotlight the current situation was “unsustainable”, adding he was determined to see “urgent improvements”.
‘Spotlight: I Am Not Okay’ is available on BBC iPlayer and is on BBC One NI on Tuesday 24th September at 22:40 BST.
