I know the exhausting struggle of looking after a disabled child – we MUST do more for our brave, neglected carers

MY son John is like many 12-year-old boys – obsessed with his iPad, loves trains and laughs at funny noises, especially if they sound rude!

Unlike most young boys, though, John can’t walk or talk properly, he is severely disabled. John has a brain condition that even the world-beating NHS doctors at Great Ormond Street Children’s Hospital can’t put a name to.

We don’t know what caused his condition. We don’t know what the future holds for him.

But like thousands of parents in a similar situation, my wife Emily and I just try to do everything we can to help John be happy and the best he can be.

One of John’s great pleasures is pushing a shopping trolley, but without help, he’d fall over. We were so proud when he learnt to ride a special tricycle – to us, that was the equivalent of an Olympic gold medal.

He loves it when I jog beside him. His favourite exercise is splashing in a toddler’s pool with a buoyancy aid. Seeing him sit upright on a horse at riding-for-the-disabled can make me feel pretty emotional.

On a good day John can put together a short sentence. But until a few years ago, we thought he would never say more than a few words.

He was nine when he said “Daddy” for the first time. I smiled for a week.

'Lockdown has been especially challenging'

Life with a disabled child is hard though.

My wife does a lot more than I do, and we are lucky to get some help. But it is relentless. And exhausting.

John needs 24/7 care. He has to be washed, dressed, fed and needs help to go anywhere.

He can shout and get cross. When he pinches you hard, he’s mostly telling you he loves you. But sometimes he’s getting his frustrations out. And it hurts.

Lockdown has been tough for millions of people – but for disabled children and their families, I can tell you, it’s been especially challenging.

My family are more fortunate than many, but I really worry about families with disabled children who are struggling financially. Whose housing is inadequate. Where the parents desperately need a break from caring. And maybe, where the disabled child needs a break too.

'I will fight for disabled children and their families'

The Sun is doing magnificent work with the Disabled Children’s Partnership, fighting for children and their families with the Give It Back campaign.

Ministers must listen to this call and must return the £434 million-a-year for respite care, support and equipment, that’s been taken from social care budgets for disabled children.

Give it back

Why we demand the Government helps families with disabled kids:

Disabled children and their families are desperately struggling because of a lack of support.

We want the Government to reinstate the £434m of funding it has cut from early intervention services – such as respite care and vital equipment.

It is time for the Government to Give It Back.

The number of disabled children in the UK has risen to nearly 1 million over the past 10 years – up by a third.

But funding and support has been cut.

Families with some of the most vulnerable children in the country are struggling to cope.

That’s why we’re working with the Disabled Children’s Partnership to help them.

Together we can make a real difference and hugely improve the lives of disabled children and their families.

We want you to share your stories, email us on [email protected]

Please sign Ollie’s letter to put pressure on the Government to act now.

And from Day One when I became the Leader of the Liberal Democrats, I made my commitment to Carers clear: I will fight for more money to support Carers and more recognition for the important role they play in society.

I will fight for disabled children and their families and for the people they love.

One reason I am going into bat for them is because I know that being a Carer is a continual fight. Fighting for special needs. Fighting for some therapy. Fighting for a break.

Parents of disabled children tell me that’s their experience too. Struggling for the basics for their kids is the most exhausting part of it all. From the paperwork, to the bureaucracy, to just getting someone to listen and understand.

So, my fight will be partly about changing the law so that carers and disabled children get more support. I’m involved with a charity called the Disability Law Service, and we’ve already got a draft law, to make it easier for people to manage working and caring.

'Time and again, carers – and the people they love – are overlooked'

But we also have to think about Carers who can’t work because they care full time.

They deserve more financial support than £67.20 a week Carers’ Allowance, which is the lowest benefit of its kind.

Without the work of unpaid carers and people on carers’ allowance, the bill for taxpayers would be hundreds of billions of pounds more than it is today.

So today, on Carers Rights Day, Liberal Democrats are calling on the Government to do what they did for Universal Credit, and put up Carers Allowance by £20 a week.

I am also fighting for disabled young people to have access to money that is rightfully theirs.

Where to get help

Contact A Family Support And Advice, 0808 808 3555

Independent Provider of Special Education Advice (IPSEA) – for specialist legal advice

Newlife – a charity that provides help with equipment

GOV.UK – to understand your child's entitlements

National Autistic Society
youngSibs – great advice for brothers and sisters of a disabled child

Family fund – provide grants for those raising disabled or seriously ill children

Bureaucratic laws are preventing around 150,000 disabled children from accessing their Child Trust Fund, the savings scheme set up for every child by the Government back in 2003.

Other children are enjoying their own savings, why should disabled children once again miss out?

Time and again, carers – and the people they love – are overlooked. We need to keep up the pressure so that the Government treats Carers and their families with the respect and dignity they deserve.

There's an emerging pattern of neglect when it comes to protecting Carers’ interest that is terribly unfair.

As an MP, as the leader of the Liberal Democrats and most importantly as John’s father, that’s something I refuse to accept.

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