When I first read that care workers had been paid £29 for a 9 hour night shift, I was shocked.

My son James is disabled and for many years my husband Andrew and I were his sole night carers. James is 18 now and lives in a Home, but when he lived with us, nights were utterly terrible. He rarely slept through, often waking at 3am. He has epilepsy, cerebral palsy and autism and is doubly incontinent. He would regularly cover himself and the room in faeces. Or would have a seizure and turn blue.

The idea that a carer dealing with that could be worth only £3 per hour struck me as indefensible. But then I realised that there are two different types of night cover; waking and sleeping.

James needs someone looking after him who is awake all night, like a nurse on a hospital ward. The £29 flat rate shift I had read about was for carers who slept in the homes of people with milder disabilities. The carers had their own bedrooms and most of the time they were undisturbed. This is known as a "sleep-in" shift.

Some carers successfully challenged this at tribunal, claiming an hourly rate for the whole night at minimum wage. As a former lawyer I was interested in the case and I thought it was good news. I didn’t see why carers should sleep in someone else’s house and potentially be woken at any time by a person who needed specialist care, for so little money.

However, I then read something which made me go cold. HMRC had decided that carers on sleep-in shifts could claim for lost pay, going back 6 years!

Although we had always looked after James at night ourselves, we had had carers living with us during the school holidays when he was a child. They had only done day shifts, but they had slept in our house. We had been given direct payments by the council to cover the cost. Could the carers possibly claim back pay for their nights?

I did a rough calculation which showed that we might face a bill of £2,000. Other parents were faced with much bigger bills of up to £50, 000, and the total cost for the organisations which employed carers was £400 million! It seemed there was a real fear that many of them would go out of business, or cease providing sleeping night cover at all.

There are over 178,000 people who rely on sleep-in cover, and the potentially devastating effect on them is all too obvious to me.

Firstly, disabled people might lose the carers they know. Caring for a disabled person over a long time places you in a particularly intimate relationship. Washing someone else’s body, preparing their food, learning what makes them smile and what frightens them, is what also enables you to help them live fully. Taking that away is like losing a family member, often for both of you. Sometimes I don’t just sit with James and read books, or take him out for a walk in his wheelchair. I shave him or change his pad even when there is a carer there, just to maintain that bond.

Secondly, disabled people might also lose the homes that they knew. Without sleep-in carers, the local authority would be in breach of its duty to keep people safe if they were unattended, so the only alternative may be institutions, taking us back 50 years. The concepts of ‘care in the community’ and ‘independent living’ could become empty phrases.

Mencap has launched a petition asking for urgent reassurance from central government that it will foot the £400 million bill; reassurance which is so far not forthcoming. Meanwhile disabled people and their families don’t know what is going to happen to them. They must be terrified by the current uncertainty. So must the thousands of carers who may lose their jobs.

The injustice of this situation is that it was caused by central government. Government guidance for years was that the minimum wage only applied if a sleep-in carer was woken. Following the carer tribunal cases the government issued new guidance last autumn saying the opposite, which led to the thunderbolt HMRC decision. Local authorities have no contractual obligation to pay the bill and no money, so there seems to be a perfect storm of government unaccountability.

My family is all too familiar with trying to get resources from different government departments. Before James lived in a Home we had no help at all and it nearly destroyed us. I used to dream of drowning myself in our local reservoir, just so I could escape. We had to fight our own tribunal case to get him what he needed.

We are lucky that James has just qualified for continuing healthcare, so he is funded by the NHS and he is out of this particular storm. For the moment, anyway.

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Jane Raca is a former lawyer and author of Standing Up for James.

The Government's bill to the care sector for six years back pay is a threat to the vital support for thousands of disabled people. 

Please sign our petition to #StopSleepInCrisis by urging the Government to fix this problem, which they have created.

The future care of the most vulnerable people in our society must be protected.

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Do you or a loved one pay for care out of a personal budget or by direct payments?

If you're worried about being personally liable for 6 years back pay and want to talk publicly about your concerns, please contact our media team on reallifestories@mencap.org.uk so we can help you get your voice heard. 

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The care sector has been landed with a £400 million bill, and many providers now face bankruptcy.

The Government has caused this problem and only they can fix it.

Sign our petition now to #StopSleepInCrisis and help keep vulnerable people safe.

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