The Secret Life of Us

10 August 2017

In this guest blog, Amanda Batten, Chief Executive Officer at Contact a Family, discusses the challenges disabled children unfairly face every day, the importance of solidarity and why their Secret Life of Us campaign is needed now more than ever.

Nascot Lawn is a respite centre for disabled children with (very) complex needs in Hertfordshire. Nascot Lawn is set to close in November. No alternative support has been arranged for the children and families concerned.

 
 

"As CEO of a charity for families of disabled children, and as a human being, I am both saddened and extremely cross about the planned closure. This is not a unique situation; we know that over half of local areas have cut funding for short break services in recent years. With continued pressure on health and social care budgets, the kinds of services that support families with disabled children to do ordinary things that the rest of us take for granted, are under increasing threat.

In my experience, what children and families want is usually pretty modest, but the consequences of withdrawing support can be extreme.

One Mum, whose daughter is non-verbal, non-mobile with complex health and learning needs, observed that without the centre, “no-one else [other than me] is available or able to take care of my child – this is scary.” So what happens if Mum is ill, there’s another family emergency, or heaven forbid she wants to go to work? There is no back up plan for her daughter.

That’s why it’s more important than ever for local communities to take control, which is something People’s Health Trust do. People’s Health Trust believes in supporting local communities to take greater control over what happens in their neighbourhood, it believes in co-production. For me, Nascot Lawn demonstrates why something as self-evident as this still needs to be championed. There was no consultation on the CCG’s decision to withdraw funding, and as such it reflects a decision made in isolation from the community.

It is cases like this that led to the formation of the Disabled Children’s Partnership. The Partnership is a growing group of over 50 organisations who have joined forces, working closely in partnership with parents, to campaign for improved health and social care services for disabled children and their families. I recognise that battles like Nascot Lawn are fought locally. So why set up a national partnership?

Local decisions like those at Nascot Lawn aren’t made in a vacuum; they reflect financial pressures and confused accountability. The role for the Partnership is to pose the difficult policy questions, so not just does the NHS have a responsibility to these children, but should it? And if so what should it be? Ultimately, we believe that we need to re-shape the framework within which these decisions are made. That requires political will, and we only stand a chance of securing this if we act together.

This is why we’ve launched the Secret Life of Us campaign. The campaign brings to life the realities of the challenges disabled children and their families face, challenges that most people simply do not see. Because in order for disabled children to be a higher political priority, we need to remove the barriers to people being able to relate to their lives, creating greater understanding, affinity and empathy for them and their families. We want to provide a platform for stories like those at Nascot Lawn to be heard.

So, when it comes to DCP’s role, and more widely, the role of national charities in relation to local communities and families; in my view it comes down to one word. An old fashioned very political word, but one I think the third sector should reclaim because it is actually what we’ve always been about. Solidarity.

Our role is to act in solidarity with the families at Nascot Lawn, with families of disabled children up and down the country, and to collaborate to drive change.

There is strength in shared endeavour. Join the campaign here."

 

Amanda Batten

Amanda Batten is Chief Executive Officer at Contact a Family.

 

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