Helen Hale · @helen_hale

31st Jan 2012 from Twitlonger

A stressed out Mum's thoughts on the #wrb... just walked into the kitchen after a long working day. Danny, my 21 year old learning disabled son has not long arrived home in his taxi and headed straight to the kitchen. I look across to the window and see I am already too late, the venetian blind and wall around the window is completely covered in yoghurt. I go and fetch a ladder and a cloth and start to clean up, quickly realising that the blind will have to come down. Dan appears back in the kitchen, sees what I am doing and quickly retreats with his hands over his ears. He knows he’s done wrong but he can’t help it, he is compelled to open and shake everything he can get his hands on... milk, yoghurts, sauce, paint, shampoo... the list goes on and on. Apart having the major clean-up operation to deal with each time, the cost of replacing these items is beyond funny. Then there is all the furniture he breaks from bouncing on it... the clothing he rips... Imagine having a toddler who is into everything and then imagine if that toddler was suddenly the size of an adult 5’ 11’’ tall and could get into any cupboard, even if you locked it. Today I've been reading about the proposed cut to benefits to families with disabled children, the latest particularly cruel punishment arising from the welfare reform bill debated in the House of Lords. I can't even begin imagine how we'd have coped without additional income from benefits when Dan was younger. Apparently Lord Freud thinks a drop in income of £1,500 isn’t a significant amount and losing it will incentivise parents to go out to work – what planet is this man on? Does he have any grasp on disabled children’s real life situations at all? Dan’s Dad and I both work full time... we’re both self employed childminders. I think about how much money Danny has cost us since he was born, and how much he will go on costing us until we become too old to care for him ourselves. Our situation is not uncommon. Up and down the country there are working and non-working families just like ours, with disabled children and young adults, just about managing to get by. Dan’s Dad and I earned below £15,000 between us last year. Dan’s Dad also gets carers allowance. We don’t qualify for working tax credits because our total income of around £18,000 including the carers allowance means our income is too high. We’re lucky that we have a low mortgage, we’ve been in the same house for 25 years, but it’s too small for us now. Danny’s bedroom is 5’ by 10’, his older brother (who left home but couldn’t afford his rent and moved back) doesn’t even have a bedroom, he sleeps on a bed settee in the dining room. We tried to move a few yars ago but were refused a mortgage, and we can’t affort to rent a larger house. Danny is in the support group for ESA and has an indefinite award of HRC and HRM DLA. The benefits give him an independent income and help us to meet his living costs. He doesn’t qualify for help with housing costs because he lives with us. Danny is one of the statistics that ministers and the press keep demonising when they refer to the workshy scroungers that society can no longer afford to support. Anyone who has ever met Danny is under no illusion that he will ever work... he has severe autism and learning difficulties with no speech. He is unable to read, write his name, or communicate in any way shape or form. He cannot clean his teeth, shave himself, wash his own hair, or even wipe his own bottom. He cannot make a sandwich, use a microwave, toaster, or kettle (although he’s quite good at putting metal cutlery in the microwave and setting fire to tea towels in the toaster). He has challenging behaviour, has punched his escort in the back of the head and flung the car door open when it was moving for no apparent reason amongst other things, but he is not malicious, he just doesn't understand why we don't understand... Danny has quite a good package of local authority care, he attends specialised ‘meaningful day-time activities’ with one to one support, jointly funded by health. Don’t get me started on how hard we had to fight for this, par for the course the same as our fight for appropriate education was when he was younger, but without this support in place we would be unable to work. I wonder how Lord Freud thinks the parents whose benefit he wants to cut are going to organise support for their children while they are at work. Now while all this goes on we are also being told that all local authorities have to tighten their belts. The new personalisation agenda means that support is being cut, disabled people are being told that they have to stay within budget... mustn’t exceed their share of the pot under the resource allocation system. But what if the budget doesn’t cover the cost of the services you need? ?? I worry a great deal about what will happen to Danny when we are gone, who will look after him, advocate for him. I worry about a society that sees its sick, disabled and vulnerable as a burden. I worry about a Government hell bent on making savings with no respect at all for its most vulnerable citizens. In short I’m exhausted, and I worry...

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