One family member who pays for overnight ‘sleep­‐in’ support via a personal budget talks of their concerns and fears at being faced with an HMRC back­‐pay bill of £45,000.

This is money the families simply do not have.

Commenting on those concerns Mencap Chairman, Derek Lewis said:

“Although Government has recognised the seriousness of this issue, its failure to accept responsibility for earlier incorrect guidance on the payment to care workers for overnight ‘sleep-­‐in’ support, is causing uncertainty and anxiety for ordinary families as well as the care sector.

“Care providers who rely on Government funding to pay for the community based care of adults with serious learning disabilities are being asked to find £400 million from their own resources to fund back-­‐payments. While ordinary families, who pay for their own care are facing personal liabilities of up to £50K. All because the original Government interpretation of how care workers should be paid under the National Minimum Wage, was wrong.

“For a Government that spent £780.3 billion in the 2017 fiscal year, £400 million doesn’t seem like much to ask. It would help pay for the ‘sleep-­‐in’ support and care of 178,0002 people with a learning disability across the whole of the UK, and give them the chance to live an independent life in the community.

“At Mencap, we worry about the effect that this is having on our staff, families and the people we care for. Our care workers do a fantastic job and we want to pay them fairly. Since April we have been complying with new Government guidance and paying the National Living Wage but trying to fund 6 years back pay would cause us severe problems”.

Turning his attention to the people with a learning disability and their families, that Mencap and other providers support and help care for, Chairman Derek Lewis, said that he wanted to share two stories, one from Shirley and her son Lloyd. And the other from Wyn and his daughter Non.

A mother’s story, told by Shirley*

Image of Shirley and her son Lloyd:

My son Lloyd has a severe learning disability and he receives a personal budget (Direct Payment) from his Local Authority to pay for his 24/7 care needs. An essential part of that care involves staying overnight.

Lloyd and our family’s life has been transformed by 'sleep-­‐in' support. He gets to live in his own house, make his own choices and be as independent as possible. I heard back in January that my son’s staff should have been paid minimum wage for this work. As Lloyd is classed as the employer he could receive a personal demand of £45,000 back pay which is due to his staff.

The support workers who we pay to provide Lloyds care rightfully came to us earlier this year saying that guidance had changed and they should be paid at least the minimum wage for 'sleep-­‐in' shifts and that they are owed 6 years back-­‐pay. Lloyds care workers are amazing people -­‐ they make his new independent life possible. They deserve to be paid correctly and what they are entitled to.

Lloyd will require addition funds to his personal budget to cover these new costs. I have contacted the Local Authority with back pay details. They did not respond.

After a number of months and a variety of different approaches I've still not received any response from them. I am very disappointed that they haven't responded.

Lloyds staff have informed me that they have taken legal advice. As Lloyd is classed as the employer he will be expected to pay this back pay and his personal budget does not cover these costs. I am most concerned. The Government and the Local Authority need to sort this out. I and Lloyd should not have been placed in this position.

A Father’s story, told by Wyn Williams

Images of Wyn and his daughter Non:

My daughter Non is 30 years old, she is quadriplegic, has a learning disability and is registered partially sighted. Non needs 24­‐hour care and a significant component of that care is sleep­‐in support.

For the first 25 years, Non lived at home with my wife and I. When my wife passed away five years ago, I cared for her for the year afterwards. It was always our dream for Non to

live independently, so when our local authority built a suitable place very close to where I live, it was perfect. That was opened 4 years ago and she lives there with three other people who need the same level of care.

Non is really, really happy at the moment, she’s developing as an individual. I visit her weekly, she comes to me for tea or supper, or we go on the occasional outing. She is blossoming -­‐ it’s just fantastic to see. She loves it there; the care is quite outstanding. What the carers have created there is a real home. They have become a part of the extended family.

At 30 years of age Non is very vibrant and sociable. But, she can only do all this because she’s safe and secure. It is extremely unsettling to know that this could be at risk.

We know, the learning disability sector has a heavy cloud hanging over it – the Government recently changed its guidance around the payment that carers who provide ‘sleep-­‐in’ care. This means the sector could face a £400m back pay bill, something which Mencap is warning will push the sector to the point of collapse.
If this happens, and the Government doesn’t step in, Non would no longer have the 24-­‐hour care she so completely relies on.

As her father, not only does sleep-­‐in care provide me with peace of mind both now and in the future, but knowing that she is safe and secure at all times gives that critical reassurance that any parent with a disabled child needs. Having someone there, on hand, should Non need care, provides a safety net for her and our family to know that she is protected and secure.

Non sleeps mostly at night but sometimes she wakes and can’t turn herself over. She needs 2 people to turn her over so carers are there to help her. It means that should she have to go to hospital, someone needs to be with her 24 hours a day. That is just how it has to be for Non.

If there wasn’t 24-­‐hour care, I really don’t know what would happen. I don’t know what the consequences would be – I don’t like to think about it. My daughter is extremely vulnerable, if she was deprived of the security of knowing that essential support was available when needed, her health would be at risk of being significantly compromised.

But Non is not unique. There are thousands of people like Non in the country. I dread to think what would happen to these people if this care no longer exists.

My wife and I often thought about what the long term would be for Non, especially once we had gone. This was our ideal setting and we have been fortunate that it’s turned out like that. If sleep-­‐in care ceased to exist, it would be nothing less than devastating.

That a person who provides sleep-­‐in care should get the same amount as someone who is awake, is excellent. But it must be funded. It’s no good the Government making decisions without providing the resources to fund it.

It’s a mark of a civilised society how we treat the most vulnerable. It’s great that people should have the right pay for their work and people should recognise that sleep-­‐in care is just as important as waking care. But it’s imperative that the Government steps up. We all know the difficulties of the current climate but the Government has to grasp how critical the consequences are for people like Non. It may seem like a lot of money but it’s miniscule compared to some other spending made by Government.

Mencap Chairman Derek Lewis concluded:

“The learning disability sector is under threat as never before. For Mencap, it is the worst crisis that the charity has faced in its 70 year history.

“178,000 people across the UK have a serious learning disability and depend on the care that charities like Mencap provide. We are also very concerned about the effect that the Government’s failure to pay the ‘sleep-­‐ins’ back-­‐pay bill is having on the 100,000 ordinary families like Shirley and Lloyd, many of whom have personal budgets and could be facing back-­‐pay demands of up to £50K. They are frightened, have no-­‐one to turn to and do not have a voice.

“We are urging Government to take responsibility for the £400 million ‘sleep-­‐ins’ back-­‐pay bill and allow those being cared for, their families and their carers some peace of mind. In the 21st century, those with serious learning disabilities deserve the opportunity to live independent lives”.


For further information or to arrange interviews, please contact the Mencap press office on 020 7696 5414 or or for out of hours 07770 656 659.

Notes to editors

*Shirley has requested for surnames and location to remain anonymous.

  1. Cordis Bright research on sleep-­ins found back­‐pay claims could range between £160 million and over £400 million

  2. 178,000 people with a learning disability in the UK who are known to statutory services:

Please see these previous Mencap press releases for background to the #StopSleepinCrisis campaign:

Kit Harington stands behind Mencap's campaign to save learning disability care -­

Game of Thrones, and Mencap ambassador Kit Harington lent his support to Mencap's campaign on Wednesday 2 August 2017:

Mencap reacts to Government announcement on sleep­‐ins. On Wednesday 26 July, the Government announced it would to temporarily suspend HMRC enforcement action and waive historical penalties:

Jo Whiley helps launch national petition to save her disabled sister's support and thousands of others. Mencap ambassador Jo Whiley shared her sister’s story, who benefits from sleep‐in care, and helped launched Mencap’s online petition on Wednesday 26 July 2017:

Royal Mencap Society chair disappointed that Government not even able to indicate when a decision on sleep in funding would be made. After a ministerial meeting Mencap issued a news release on Friday 21 July 2017:

Royal Mencap Society Chief urges Government to avert crisis in the learning disability sector. Royal Mencap Society issued a news release on Wednesday 19 July 2017:

About Mencap

There are 1.4 million people with a learning disability in the UK. Mencap works to support people with a learning disability, their families and carers by fighting to change laws, improve services and access to education, employment and leisure facilities. Mencap supports thousands of people with a learning disability to live their lives the way they want.

For advice and information about learning disability and Mencap services in your area, contact Mencap Direct on 0808 808 1111 (9am­‐5pm, Monday­‐Friday) or email

What is a learning disability?

A learning disability is a reduced intellectual ability which can cause problems with everyday tasks – for example shopping and cooking, or travelling to new places – which affects someone for their whole life.

People with a learning disability can take longer to learn new things and may need support to develop new skills, understand difficult information and engage with other people. The level of support someone needs is different with every individual. For example,

someone with a severe learning disability might need much more support with daily tasks than someone with a mild learning disability.

Learning disability is not a mental illness or a learning difficulty. Very often the term ‘learning difficulty’ is wrongly used interchangeably with ‘learning disability’.

Download an official copy of the press release in PDF format here.