When our son Ben was born and diagnosed with Spinal Muscular Atrophy, a neurological condition that causes weakness to the muscles, our lives were turned upside down.
Ben’s condition means he has complicated health needs which require personal one to one support most of the time, and when he is unwell is very demanding of time. Ben is now 15, and has a 12 year-old sister Emily, and his care needs today are just as complex as when he was born.
The need for a break
Like so many other families who look after children who need constant care, it’s fair to say we have relied on short break support over the years. Short breaks are a lifeline to all of the family. For Ben, it’s a much needed opportunity to be with his peers and have fun and independence, and we know he’s in a safe environment and will get all the specialist care and one-to-one support he needs.
And for all of us, it’s a much needed break, the chance to recharge our batteries and catch up with daily life – just doing the shopping, housework and all those jobs that mount up. Or to just have a moment of calm together – getting a chance to spend time with Emily is difficult, and short breaks allow us to give her some of the attention she needs.
The attention Ben needs everyday precludes us doing anything beyond caring for him. It’s relentless and exhausting; the stress and tiredness creeps up and you realise that you just need a break – without this we really couldn’t function. And our experience is typical for families who are caring for a child with a life-shortening condition and providing round the clock care – in fact in many cases relationships can suffer badly; research has shown a breakdown of the family occurs in up to a third of cases.
Short breaks make all the difference – it’s hard work caring for Ben, but it shouldn’t be soul destroying.
Unfortunately, the funding of short breaks faces an uncertain future, and we just don’t know if they will soon be a thing of the past.
In December 2010 the government committed £800 million in funding for short breaks to make sure local authorities could meet their legal duties under The Regulations for Breaks for Carers of Disabled Children 2011 over the course of the Parliament.
However, the Every Disabled Child Matters (EDCM) partnership found that 58% of local authorities who responded to their freedom of information requests had cut their short breaks spending by an average of 15% in this period.
These cuts in funding are having a direct impact on families – the same survey found that only 9% of parent carers agreed or strongly agreed that families with disabled children can access the short breaks they need.
Time to act
Together for Short Lives wants the UK government to hold local authorities to account to increase funding for short breaks for disabled children. This not only provides vital respite and support that helps families like mine cope and survive, but in the long term it saves us all money by reducing the number of hospital visits and burden on the NHS.
I don’t know if the government will act on short breaks in this week’s budget, but what I do know is that Ben’s needs and the level of short breaks we all need don’t change. And I know there are thousands of families like ours who would buckle and break without this lifeline support. The Chancellor has it in his gift to make a lasting difference to families, to increase short break funding and give families the vital support they need. A small investment in this week’s budget, could make a lifetime of difference to families like ours.
Doug is father of Ben (15) and Emily (12). Alongside his partner Sandra he is a primary carer for Ben, who’s Spinal Muscular Atrophy means he needs 24 hour care. Doug is also a parent Trustee for Together for Short Lives.
You can support parents like Doug by spending five minutes right now to contact your local councillor to raise the issue of short breaks with your local authority. Just click here and follow the instructions on screen.
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