Immoral bedroom tax penalises my disabled son, says Derby mum

LOOKING at the spare room in Hayley Sims’ Mickleover home, you could easily mistake it for a hospital storage cupboard.

Shelves of nappies, medicines, paper towels, swabs, ventilator parts and special liquid food – all of it vital for the care of her son, Reuben.

The five-year-old has a serious medical condition which means he needs 24-hour care and is in one of the home’s four bedrooms which looks like a small medical ward. He has little use of his muscles, heart trouble and communicates by moving his eyes and through slight movements of his right hand.

There is nothing wrong with him mentally but his life-limiting condition means that, as he watches television, he is breathing using a ventilator. It’s not a time when you would think his mother, Reuben’s full-time carer, who also lives with her partner and seven-year-old daughter, should have to worry about anything other than her family.

But Miss Sims, 39, is currently fighting two battles linked to the Government’s under-occupancy charge, dubbed the bedroom tax by opponents. She says she is losing £18.40 a week from her housing benefit because of the “spare room” containing the medical supplies.   Miss Sims says she has the money to pay off arrears building up as a result but says she will not in protest and has branded the charge “immoral”.

She said: “David Cameron had a disabled child but his situation is far removed from the struggles of ordinary people in the same situation. If you have that much money, people tend to engage a private nursing agency. He probably did not have to pull the night shifts. MPs may well listen but they have no understanding.  I feel like I’m being penalised for having a disabled son.”

The charge is designed to encourage people in social housing to downsize and so free up empty bedrooms and reduce the nation’s benefits bills.

People lose 14% of their housing benefit per week for under-occupying by one room and 25% for having two or more spare bedrooms.

To begin with it looked as if Miss Sims would be hit for 25% but, on appeal, it was agreed that a rule which usually means children under 10 have to share a bedroom, no matter what their sex, would not apply to her. That left her with Reuben’s bedroom – also used by carers when they come to look after him at night – a bedroom for her and her part-time librarian partner, one for her daughter, Remy, and the “spare” storage room.

Her argument against being penalised for the storage room is two-fold.

First it simply would not be possible to fit that number of supplies anywhere else in the house and second she could not downsize even if she wanted to. Derwent Living, the housing association that owns the property, agrees with her that it is very unlikely any other suitable property could be found for her. And Councillor Baggy Shanker, city council cabinet member for housing and advice, says the authority would “find it very difficult to rehouse the family to a three-bedroom home”.

The house has been fitted with more than £25,000 of adaptations to make it possible to care for Reuben, who has a condition called Pompe disease, crrct a metabolic disorder which damages muscle and nerve cells. These include a commercial lift used to move him and a carer upstairs, a wet room where he can be showered, and two ceiling hoists to move him, which need reinforced ceilings.

Miss Sims said: “At the end of the day there’s nowhere else for us to go. Moving is not an option so we are trapped with this tax.” She added: “The Government are saying they are trying to free up properties but I think this is just about revenue and the amount of cash they think they can generate.”

Now Miss Sims is, with the help of Derby City Council, taking the Government’s Department for Work and Pensions (DWP) to a tribunal to appeal against the decision to reduce her housing benefit by 14%.

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