Local authorities fail families in need of respite support

The BBC recently reported on the stories of four families who have children with complex additional needs in the UK.

Eoin is 16, Theo is 11, and Rudy is 15; Danny’s age isn’t provided but is likely to be somewhere in the same age range as the other boys.

All of them are Autistic and have what is described as ‘severe learning disability’ which can lead to upsetting and harmful behaviour towards themselves and others.

The report hears from each of their families as they describe times that their children become distressed and what then happens.

The report hears from 4 families as they describe times that their children become distressed and what then happens

As well as the challenges that these young people, and their families, experience, there is also reference to more positive experiences too, including when Eoin and his dad spend time in a hydrotherapy pool together, or where Theo’s dad comments that Theo is “…a gorgeous child. He is affectionate, he is warm. You can see he wants to belong everywhere.”

It is good that the report takes time to mention these positive moments too.

The report links to the BBC Spotlight programme where the boys mum’s share their experiences: it’s hard viewing, but shows how their struggle is real and how desperate they are for help.

What really caught my attention, however, was that none of these families are able to access essential respite support for their child.

In every case, local authorities have essentially left the families to cope on their own with no opportunities for a much needed chance to recharge their batteries.

The South Eastern Health Trust, who look after Danny and Rudy’s care, said it would not comment on their cases.

It said it understood the pressure on families but it could not offer respite because beds were being used by children who need long-term placement. It added that it hoped future funding would be made available.

Local authorities have essentially left the families to cope on their own with no opportunities for a much needed chance to recharge their batteries

The Belfast Health Trust, who are responsible for Eoin and Theo’s care, said it was very sorry that it was unable to offer overnight breaks, but that the Trust was exploring ways of reintroducing them.

This really resonates with me, as James has not been offered respite support for about seven years now. The stories of these boys is James’ story too.

We continue to seek respite support, but so far our local authority has not been able to find a provider that can meet James’ complex needs.

While we are desperate for a break, and for James to have access to different positive experiences, we won’t compromise on the need for James to be safe, well cared for, and happy in any provision offered.

We are currently at the starting point of discussions with a respite centre that might be the last option in our area. A meeting we had was encouraging, but we await the next steps.

Those next steps aren’t even available for Eoin, Theo, Rudy, and Danny… there is nothing available at all for them.

While new Health Minister Mike Nesbitt said the current situation was unsustainable, adding that he was determined to see “urgent improvements”, we need to see immediate action to back up those words.

In the meantime, families continue to struggle to cope on their own. If your family’s story is like Eoin’s, Theo’s, Rudy’s, Danny’s, or ours, then know that you are not forgotten, you are not alone, we see and hear you, and will do all we can to bring about meaningful change for the sake of all of our children.

Mark Arnold, Director of Additional Needs Ministry at Urban Saints. Arnold blogs at The Additional Needs Blogfather. This article was re-published with permission.