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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

here are many ways in which laws death of a person with no family, despite
can disadvantage people with them having many friends and contacts
Tlearning disabilities. who could have been a comfort.
I will start with a relatively minor When data protection law is combined
example. In the past, some people with with the Mental Capacity Act, it can result
learning disabilities were able to pass the in a paid advocate, who does not know
driving test (Duffen, 2003). Then, in 1996, the person, being brought in to help with
a theory test was introduced, which made decisions instead of close friends and
driving an intellectual as well as a practical carers who know the person well.
activity, largely preventing anyone with Following the Care Standards Act
learning disabilities from gaining this Stop now: the driving theory test has prevented (2000), stringent minimum standards for
life-enhancing ability. people with learning disabilities from driving buildings were introduced, which made it
The Mental Capacity Act (2005) was nearly impossible to accommodate people
based on the principle that people should assessments, incurring vast expense and with learning disabilities in normal
be assumed to have capacity to make diverting social workers from proper housing. This is no longer the case and the
choices and decisions unless there was social work. emphasis has shifted to record keeping.
clear evidence to the contrary. Introducing criminal record checks for The Care Quality Commission, which is
In practice, the capacity of a much greater staff working closely with children or charged with overseeing standards arising
number of people has been questioned in vulnerable adults was sensible. But, as from the act, is hugely expensive to run
far more contexts than previously. Almost with DoLS, they were quickly extended to and has a record of failing to identify bad
any important decision faced by a person a vast, expensive level. practice (as at Winterbourne view) while
with learning disabilities is met with a One in four adults – 11 million people giving excessive attention to services
demand for a capacity assessment. – is now subject to a police check in their acknowledged to be good.
Capacity judgments are supposed to be role. There are four million new checks The recent debacle over sleep-in
specific to particular decisions but in, every year, involving huge manpower and payments threatened to bankrupt a
practice are often blanket conclusions, great expense. The requirement for a number of care providers, including
they cannot understand the process of “ learning disabilities. In this case, a judge
especially when finance is involved. For
voluntary organisations for people with
example, a decision that someone lacks
One in four adults – 11
ruled that a person who slept in so they
capacity to manage their day-to-day
could provide support during the night if
expenses should not lead to an assumption
million people – is subject
making a will, but it usually does. to a police check. This has needed was at work, so must be paid the
minimum wage, backdated for six years.
The ruling has been overturned, but a
Disproportionate limits led to a large reduction in further appeal is pending (Mencap, 2018).
volunteering
The Deprivation of Liberty Safeguards, All these examples of how laws are
(DoLS) (update on pages 8 and 9) police check has led to a large reduction ” applied show how people with learning
originated from a 1990s legal case about a disabilities can be harmed when this
person detained in an institution against creates damaging restrictions, disrupts
the wishes of his long-term carers. in volunteering, for example a 35% drop in relationships, makes community care
The outcome was that such deprivation parents and others offering to help in extremely expensive and diverts vast
of liberty was only permissible with full primary schools (Daily Telegraph, 2013). armies of people to non-caring tasks such
documentation of the reasons and access as assessment and inspection. n
to review. Data control disruption
This was a sensible conclusion but The Data Protection Act has led to a sharp Paul Williams is a retired lecturer who
subsequent legal cases extended the decrease in sharing information that worked with people with learning
definition of “deprivation of liberty” to previously would have been shared with a disabilities for more than 40 years
include practically any restriction on a person’s friends.
person, however necessary. As a result, in In one case, a care service decided it Sarah Duffen (2003) How I learned to drive.
2016-17, there were 217,000 applications was not allowed to tell non-family Down Syndrome News and Update; 3: 23
for DoLS assessments, at least 10% of members about a change of address, NHS Digital (2017) Mental Capacity Act
Deprivation of Liberty Safeguards 2016/17.
Christy Lawrance disability services (NHS Digital, 2017). a close friend of many years. Paton G (2013) Parents treated like felons by
resulting in the person losing contact with
them – more than 21,000 – in learning
schools CRB checks. Daily Telegraph; 24 February
Every local authority now has a team of at
In another case, no one was told about
Mencap (2018) #Stopsleepincrisis.www.mencap.
a deterioration in health and the eventual
least six people who solely carry out DoLS
org.uk/advice-and-support/stopsleepincrisis
www.cl-initiatives.co.uk Community Living Vol 32 No 3 | Spring 2019 23