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 £400 million 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 minuscule compared to some other spending made by Government.
Find out more
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.
Share your story
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 email@example.com so we can help you get your voice heard.
Sign the petition
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.Sign now!