Support system ‘struggling to deliver’ for people with learning disabilities, report says

Two hands reaching out to each other

The support system in Scotland is not doing enough to enable people with learning disabilities to ‘live safe, secure and fulfilling lives’, according to a new report.

The analysis, by researchers at the Fraser of Allander Institute at the University of Strathclyde, says that despite many improvements over the past 30 years, too many people have been cut adrift, especially over the past ten years when financial pressures have restricted the support on offer.

As of 2019, there were 23,584 adults with a learning disability known to local authorities across Scotland. However, the true figure is likely to be  much higher.

The researchers examined evidence from a range of reports and data in the public domain. To reach their conclusions they combined this with a series of in-depth interviews with health and social care professionals and people with learning disabilities and their families.

More needed

Report author Emma Congreve, Knowledge Exchange Fellow, said: “The last thirty years have seen enormous changes in how people with learning disabilities are supported in society, with a shift from people living in long stay hospitals to community-based support.

“There have been new initiatives to improve people’s choice of care, a move to align their health and social care support, and an ambitious plan articulated by the Scottish Government that recognised that more needed to be done to help people realise their human rights.

“Yet at the same time, our study finds that financial pressures have restricted the support that is on offer and there is often a lack of certainty over whether people will get the care they need.

For those with mild to moderate support needs, support that enables them to live a fulfilling and independent life, has been taken away or charged for.

“Our study finds that the response to the coronavirus pandemic has accelerated many of these issues that have been rising up over the past ten years, and it is feared that much of the support that has been lost will not return or will be significantly scaled back.”

The key findings from this research are:

  • Since the financial crisis, there has been a loss in some of the non-statutory support available to people, particularly with mild to moderate learning disabilities, to live their lives independently. This means the ambitions set out in the Scottish Government’s strategy The Keys to Life have had little chance of being realised.
  • It is crucial that there is a system in place that allows people to access the support that they need. Self-directed support should have helped achieve this, but the complexity of the system has arguably made it harder for people with learning disabilities to access what they need. This highlights the issue with assuming that all social care users will benefit in the same way from innovations in how support is delivered.
  • The Covid-19 pandemic has been detrimental to the support relied upon by people with learning disabilities. Some of this has been the result of restrictions on face to face contact, and given the heightened risks that people with learning disabilities face, in many cases this was unavoidable.

Human rights

The report is published in the same week as the Scottish Government’s Review of Adult Social Care, and the publication of new statistics that show people with learning and intellectual disabilities are three times more likely to die from Covid-19 than those in the general population.

Graeme Roy, Director of the Fraser of Allander Institute added: “Our research echoes many of the sentiments expressed in the independent Review of Adult Social Care in Scotland led by Derek Feeley, but whilst there may be common issues across the whole of the social care sector, the experience of people with a learning disability are very different from others and no two people with learning disabilities are the same.

“Our research has emphasised that a person-centred social care system that can flex to different situations is crucial if people are to be able to realise their potential.

“Our research has shown that the last ten years have been challenging and that there is much that could be done to ensure that the right support structures are in place so everyone in Scotland can, at the very least, realise their basic human rights and have the best chance of fulfilling their potential.”

The report is the second in a series of publications that the Institute is releasing over the coming year as part of a major new study into the outcomes for working age people with learning disabilities and their families in Scotland.