Disabled child to lose her own room under 'bedroom tax'

Shanice and Stephanie reading together in their home. Credit: Family

Tony, Diann and their two daughters live in 3 bed house in Hull. Shanice is three years old. But their 15 year old daughter Stephanie is disabled.

She has 1p36 deletion syndrome, a genetic disorder that causes severe intellectual disability. So she has problems with mobility, speech and language. She has a mental age of a four or five year old.

At the moment, all three bedrooms are accounted for: One for mum and dad, one for Shanice and one for Stephanie.

From April, as social tenants, they will face a cut in their benefits to pay the government's so called 'bedroom tax'. Under new rules, the two girls will have to share a bedroom, because they're both under 16 and both of the same gender.

Therefore, the family will be deemed as having a spare bedroom.

So they have a choice: Take a 14% cut in benefits or downsize to a smaller place.

They say there is no way the girls can share a bedroom: Stephanie wakes up about five or six times a night and lashes out and can be violent. She has to be cajoled back to bed.

At times, like last Friday night, Tony told me she woke up at a quarter past two in the morning, and finally went to bed at a quarter to seven.

He says, Shanice just would not be safe, she would be harmed if they shared a bedroom.

They cannot downsize. The house has been adapted for Stephanie's needs. If they moved to a two bed, they would need a carer (at taxpayer's expense) to keep Shanice safe at night and the carer would need a room. So they would be moved to a three bed, but then they would not need a carer as Stephanie would have her own room but then they would face the 'bedroom tax.'

Taking a hit on their benefits, means £50 less a month and also means mum and dad skipping meals and cutting down on heating and electricity.

Both are Stephanie's full-time carers, she needs 24 hour vigilance as she has no sense of danger. Although Tony is Stephanie's primary carer, mum, Diann looks after all of the teenager's personal care.

They would be entitled to a discretionary housing payment, a hardship fund of £30 million has been set up by the government.

More: Government insists so called 'bedroom tax' will help millions.

But it will be up to the local authority to decide who gets the money. Also, it is not ring fenced and even if they do get the financial assistance, it will only be for a limited time. When the cash runs out of the pot, it will not be topped up.

The Prime Minister, David Cameron said this week, 'this is not a tax, this is a benefit.'

He insisted it is fair and said claimants living in private rented housing did not get benefits for unoccupied rooms.

Read more: Families hit by 'bedroom tax' tell of finance fears.