The learning disability care sector: hanging by a thread

Please note that views expressed in guest blogs on our website are the authors' own and do not necessarily reflect the views of the Nuffield Trust.

The first week in November saw fireworks of a different kind for the learning disability sector. After a year of indecision, the Government failed to find a solution to the question of whether or not it would pick up the bill for past statutory ‘sleep-in’ care, and instead introduced a ‘voluntary’ new social care compliance scheme, which has been met by care providers with deep concern.

It may sound dramatic, but the learning disability sector is hanging by a thread. It is the worst crisis in Mencap’s proud 70-year history, and the threat of multiple insolvencies, job losses and thousands of people with learning disabilities losing their homes in the community is sadly very real.

So, what has brought us to this? A retrospective HMRC bill caused by a government change in the rules over how the national minimum wage should apply to ‘sleep-in’ overnight care, used widely across our sector.

When the national minimum wage was introduced in 1999, government interpretation and guidance said time spent asleep did not count as ‘work time’. Instead care workers were paid a flat rate ‘on-call’ allowance, which became the norm across the sector. Local authorities with the statutory duty to assess, and commission essential care, funded this care accordingly. Care workers would only be paid their full wage if woken during the night.

This was the case for around 16 years until two employment tribunal cases challenged that interpretation. Then in October last year, new guidance was issued stating that time spent asleep during a ‘sleep-in’ shift did in fact qualify for the national minimum wage payment. This volte-face triggered HMRC enforcement action demanding six years’ worth of back pay for staff, at an estimated cost of £400 million.

Money that charities do not have

This is money that providers, many of whom are charities like Mencap, simply do not have. This retrospective financial demand was imposed without consultation and without impact assessment to establish the consequences of such a change – raising questions about how the Government would ensure the welfare of some of the most vulnerable members of our society and how the jobs of some of the lowest paid can be protected.

The threat of back-pay demands is also hanging over many of the 100,000 individuals who hold personal budgets and pay for the care of a loved one. This major change in the rules means that ordinary families, often on low incomes, could be facing bills of up to £50,000 and the possibility of personal bankruptcy. Some disabled individuals have had warning of solicitors’ letters on behalf of care workers detailing how much back pay they owe, as they are deemed to be the legal provider.

The uncertainty and stress pervading the sector is stifling innovation and freezing investment and training. And in addition to the threat of HMRC enforcement action, over half of local authorities are refusing to make funding available to cover the increased national minimum wage rate for sleep-ins. Charities like Mencap are now forced to cover the cost. Little wonder that paralysis is spreading across the country as providers turn their backs on new unviable local authority care contracts.

A response is needed

Mencap’s public campaign and increased awareness is resulting in greater political debate, but the Government is still yet to respond in a meaningful way that can prevent the sector from collapse and protect the support of almost 200,000 people with a learning disability.

The latest HMRC wheeze encourages providers to work with HMRC to assess the size of their back-pay liability for a period of 12 months, and then be presented with a bill that could wipe out their reserves with no offer of financial support. Without even an agreement in principle, it places the hard-won improvements secured over the past 30 years for people with a learning disability and their place in society in a precarious position.

Abuse scandals shocked successive governments into pursuing a new narrative of care for those with severe and complex learning disabilities. The nightmare at Winterbourne View spawned a series of welcome commitments and programmes to end the days of institutionalised, isolated ‘out of sight, out of mind’ care.

To support and deliver this, statutory care obligations were outsourced to charities and other not-for-profit organisations, as well as private providers to help create and nurture community-based care options. Today, with local authorities struggling to fulfil their care responsibilities and in the absence of a commitment from the Government for realistic funding, we are knocking back on the door of large-scale institutionalised care. What worries me most is the increased risk of abuse and neglect that must not be ignored.

Further delay is cruel

We need public figures from all walks of life and politicians of all colours to raise this issue and call on the Government to reach an equitable solution. One that takes care workers out of this revolving door, trapped in the uncertainty of whether or not they will receive back payments. For low paid workers a substantial lump sum, which could be as much as £50,000, is as good as a winning lottery ticket. These are hard-working, skilled and dedicated people and further delay is just cruel. Mencap, like other providers, really wants to be able to pay its staff what they are owed.

Delaying this critical decision for another year leaves the sector facing an impossible quandary. Surely the Government must reassess its priorities and recognise the urgent needs of some of the most vulnerable people in this country.

Jan Tregelles is Chief Executive of Royal Mencap Society.

Please note that views expressed in guest blogs on our website are the authors' own and do not necessarily reflect the views of the Nuffield Trust.