17/03/2013 18:35 GMT | Updated 17/05/2013 06:12 BST

Carers Often Can't Spare Their 'Spare' Bedroom

How many of us take for granted a sound night's sleep? And how many wouldn't be able to get through the day without it?

Tracey's husband's serious health conditions mean he needs to sleep on a hospital bed surrounded by noisy medical equipment that fills their bedroom. Dave's wife has cerebral palsy and spasms uncontrollably throughout the night, waking him constantly. Karen cares for her partner, a former serviceman, who has post-traumatic stress disorder and suffers night terrors.

These carers all need an extra room to sleep in because of the effects of ill-health or disability. Yet government changes to the 'size criteria' for Housing Benefit for people in social housing - the so-called 'bedroom tax' - means that 420,000 disabled people, their families and carers will have their housing benefit cut because they are considered to have a 'spare' room.

Government needs to understand that for families like this, these rooms are not 'spare' - they are essential.

Carers who care full-time for ill or disabled family members, or who juggle work and care - may need to sleep in another room just to get a few hours of sleep. This enables them to carry on caring or continue to work alongside looking after loved ones.

Disabled people may be unable to share a room with their husband, wife or partner, simply because their disability causes pain and discomfort which means neither of them can sleep properly. They might be unable to share a room if assistive equipment disrupts sleep.

Yet hundreds of thousands of families who need this extra space are facing cuts to their Housing Benefit - on average losing £13 a week.

For people already coping with the costs of ill-health and disability and many having given up work to care, this extra financial pressure could push them over the edge. Many will be unable to cover the shortfall and face falling into arrears, financial hardship and debt

The government's advice is for people who are affected to move or 'work a few more hours'. These options are not open to carers.

If you are caring round the clock for a severely disabled loved one, paid work may simply be impossible. Government has said clearly it does not want to force carers to stop caring and into work. It would be a terrible situation to put families in and would cost far more in the long term as local councils could have to step in to provide costly residential or homecare.

Yet moving into a smaller home is also often not an option. So many of these families' homes have been heavily adapted for the older, ill or disabled person's needs - often from the local authority purse. Where is the sense in forcing these people to move into properties which are too small for them and where alterations will simply need to be paid for again? Moving might also split carers and disabled people from support networks of neighbours, friends and families. Not to mention the risks of moving to the often fragile health of the disabled or ill person.

Yes, government has included an exemption for disabled people who needed a spare room for someone to stay overnight to look after them - but this this does not apply to carers who live with the people they care for. They need and deserve the same consideration.

Government figures show that, of the 660,000 people affected by the 'bedroom tax' 420,000, disabled people, their families and carers will be hit. Some extra funds have been made available to help those affected but our analysis shows that these 'discretionary payments' would help less than 40,000 (less than 10%) of the disabled people affected. Hundreds of thousands face crisis when these changes come into force in April.

The government has a chance with the forthcoming Budget to protect carers and their families from this cut. In a letter to the Chancellor and the Secretary of State for Work and Pensions, Carers UK along with MS Society, Mencap, Macmillan Cancer Support, Disability Rights UK, Carers Trust and Contact a Family - urge them to take it.