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COMMENT: Mayhem looms as learning disabilities sector stares into £400m blackhole

Wages for carers giving ‘sleep-in’ support to people with learning disabilities have risen – but that has left charities and providers with a huge bill to pay, writes Mencap chief executive Jan Tregelles

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Most providers of care for people with learning disabilities are charities or family-run businesses

Did you know that there are over 129,000 adults and children with a learning disability, across the West Midlands?

Many are living independent lives in the community as a result of the specialist support offered by local care providers, many of whom are charities or family-run businesses.

But these organisations are facing a £400 million bill that could cause mayhem in the learning disability care sector, turning the clock back on 20 years of gradual improvement for people with a learning disability.

The crisis now threatening to engulf the care sector is the worst in Mencap’s 70-year history and at the heart of the problem is the Government’s failure to address the core issue of funding for overnight ‘sleep-in’ care.

Sleep-in support is not simply a comfort for people with a learning disability and their families – it creates a window to the outside world and is often the vital difference between ‘living a life’ or spending the rest of their life in a hospital setting.

When the national minimum wage was introduced in 1999, Government guidance said time spent asleep by care workers providing ‘sleep-in’ support in the homes of people with a learning disability did not count as ‘work-time’.

Instead care workers were paid a flat rate ‘on-call’ allowance.

But in October last year, the Government issued new guidance, following a couple of Employment Tribunals, which said that overnight ‘sleep-in’ time did qualify for national minimum wage payments.

This was followed by HMRC enforcement action demanding that care providers be paid six years of back pay – an estimated £400m across the sector.

Providers were simply following Government guidance and this is money they simply do not have.

Local Authorities assess, commission and fund this essential care as part of their statutory duty.

Charities and other providers don’t have the financial resources to subsidise statutory care. Sadly, many organisations will become insolvent and cease to operate if this liability is enforced.

Mencap like other providers wants to pay its staff the money they are owed, indeed we have been paying the new rates since April this year, even though half of local authorities are still not paying increased rates to us.

But no-one has the resources to fund six years of back-pay. Enforced payment will simply result in providers going to the wall, resulting in job losses across the West Midlands and the rest of the country.

With large numbers of people with a learning disability forced to move homes, most likely to elderly care settings that may not be adapted to their needs.

Mencap estimates its back-pay liability to be up to £20m.

If the Government fails to fund this, we will be forced to deplete our financial reserves, donated by generous supporters, as well as slashing investment, selling assets and stopping support programmes.

Inevitably a number of our care services will also close. Sadly, thousands of people with a learning disability could be left without the care they rely on and would be faced with the prospect of living in hospitals, adding even greater strain on an already stretched NHS.

Last year Mencap sadly said goodbye to former actor, campaigner and Mencap president Lord Brian Rix. When Brian and his wife Elspet had a daughter born with Down’s syndrome they were told to ‘put her away and forget about her’.

Throughout his life, Lord Rix fought tirelessly for people with a learning disability to be able to live with dignity, independently in their communities.

The driving force behind this was to eliminate the myth that people with a learning disability are second class citizens.

This sleep-in crisis could bring into question these core values that Lord Rix fought for, with local authorities left to find the cheapest and quickest replacement care should providers go insolvent.

The investment in personalised care that can support people to be integrated in to society may begin to be viewed as a luxury rather than a guiding principle of care.

The need to campaign is greater now than ever for the learning disability community. Lord Rix would be mortified that all his hard-won progress is under threat.

He left a legacy that is still inspiring people today to protect the improvements he helped secure, by encouraging people to leave gifts in wills so charities like Mencap can continue campaigning alongside people with a learning disability, as we have proudly done for decades across the West Midlands and beyond.