policy in practice
Paved with good intentions
A raft of recent laws and regulations to protect people have turned out to be harmful to those with learning disabilities, isolating them from friends and communities, creating restrictions and incurring vast expense in community care, says Paul Williams
There are many ways in which laws can disadvantage people with learning disabilities.
I will start with a relatively minor example. In the past, some people with learning disabilities were able to pass the driving test (Duffen, 2003). Then, in 1996, a theory test was introduced, which made driving an intellectual as well as a practical activity, largely preventing anyone with learning disabilities from gaining this life-enhancing ability.
The Mental Capacity Act (2005) was based on the principle that people should be assumed to have capacity to make choices and decisions unless there was clear evidence to the contrary.
In practice, the capacity of a much greater number of people has been questioned in far more contexts than previously. Almost any important decision faced by a person with learning disabilities is met with a demand for a capacity assessment.
Capacity judgments are supposed to be specific to particular decisions but in, practice are often blanket conclusions, especially when finance is involved. For example, a decision that someone lacks capacity to manage their day-to-day expenses should not lead to an assumption they cannot understand the process of making a will, but it usually does.
Disproportionate limits
The Deprivation of Liberty Safeguards, (DoLS) (update on pages 8 and 9) originated from a 1990s legal case about a person detained in an institution against the wishes of his long-term carers.
The outcome was that such deprivation of liberty was only permissible with full documentation of the reasons and access to review.
This was a sensible conclusion but subsequent legal cases extended the definition of ‘deprivation of liberty’ to include practically any restriction on a person, however necessary. As a result, in 2016-17, there were 217,000 applications for DoLS assessments, at least 10% of them – more than 21,000 – in learning disability services (NHS Digital, 2017). Every local authority now has a team of at least six people who solely carry out DoLS assessments, incurring vast expense and diverting social workers from proper social work.
Introducing criminal record checks for staff working closely with children or vulnerable adults was sensible. But, as with DoLS, they were quickly extended to a vast, expensive level.
“One in four adults – 11 million people – is subject to a police check. This has led to a large reduction in volunteering”
One in four adults – 11 million people – is now subject to a police check in their role. There are four million new checks every year, involving huge manpower and great expense. The requirement for a police check has led to a large reduction in volunteering, for example a 35% drop in parents and others offering to help in primary schools (Daily Telegraph, 2013).
Data control disruption
The Data Protection Act has led to a sharp decrease in sharing information that previously would have been shared with a person’s friends.
In one case, a care service decided it was not allowed to tell non-family members about a change of address, resulting in the person losing contact with a close friend of many years.
In another case, no one was told about a deterioration in health and the eventual death of a person with no family, despite them having many friends and contacts who could have been a comfort.
When data protection law is combined with the Mental Capacity Act, it can result in a paid advocate, who does not know the person, being brought in to help with decisions instead of close friends and carers who know the person well.
Following the Care Standards Act (2000), stringent minimum standards for buildings were introduced, which made it nearly impossible to accommodate people with learning disabilities in normal housing. This is no longer the case and the emphasis has shifted to record keeping.
The Care Quality Commission, which is charged with overseeing standards arising from the act, is hugely expensive to run and has a record of failing to identify bad practice (as at Winterbourne View) while giving excessive attention to services acknowledged to be good.
The recent debacle over sleep-in payments threatened to bankrupt a number of care providers, including voluntary organisations for people with learning disabilities. In this case, a judge ruled that a person who slept in so they could provide support during the night if needed was at work, so must be paid the minimum wage, backdated for six years. The ruling has been overturned, but a further appeal is pending (Mencap, 2018).
All these examples of how laws are applied show how people with learning disabilities can be harmed when this creates damaging restrictions, disrupts relationships, makes community care extremely expensive and diverts vast armies of people to non-caring tasks such as assessment and inspection.
Paul Williams is a retired lecturer who worked with people with learning disabilities for more than 40 years
Sarah Duffen (2003) How I learned to drive. Down Syndrome News and Update; 3: 23
NHS Digital (2017) Mental Capacity Act Deprivation of Liberty Safeguards 2016/17.
Paton G (2013) Parents treated like felons by schools CRB checks. Daily Telegraph; 24 February
Mencap (2018) #Stopsleepincrisis.www.mencap.org.uk/advice-and-support/stopsleepincrisis
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