Ministers need to investigate why eligible people are not on the
learning disability register and take urgent action to increase
registration, including through an awareness raising campaign,
the Women and Equalities Committee (WEC) has warned.
MPs on the cross-party committee cautioned people with a learning
disability and autistic people face significant health
inequalities, including an “unacceptable level of premature and
avoidable deaths”.
In its new report entitled ‘Inequalities in healthcare and
employment for people with a learning disability and autistic
people', WEC concluded “overall care and outcomes too often still
fall below acceptable standards”.
WEC's report, the third and final one based on its findings
during an inquiry into the National Disability Strategy (NDS),
laid bare the challenges faced by those with a learning
disability in getting the healthcare support they needed.
People with a learning disability can ask to go on the learning
disability register, which entitles them to receive reasonable
adjustments, such as support with making decisions and, vitally,
access to an annual health check. Yet around 75% of people with a
learning disability are not registered, and many struggle to
convince their GP and practice staff to add them to the register.
WEC called on the Department for Health and Social Care and NHS
England to work with national and local learning disability
organisations and charities and the Royal College of General
Practitioners to investigate why eligible people are not on the
learning disability register and take appropriate action to
increase registration.
The report recommended the work should include an assessment of
the reasons why eligible people who have applied to be on the
register have been denied access to it and a review of the
existing guidance for GPs to ensure it captures all those who are
eligible for registration.
The report urged the Government to “radically increase the
funding allocated to reducing waiting times for an autism
assessment” warning: “It is clear that current efforts to
address the waiting list backlog are inadequate and that the
additional funding that has been allocated is far short of what
is required.”
WEC called on the DHSC to develop and trial an initiative aimed
at improving public understanding of autism in women and girls by
the end of 2024, adding the Government should set out what steps
it is taking to improve the autism diagnosis process for women
and girls.
MPs on the Committee recommended Ministers explain why the number
of autistic people detained in mental health hospitals has
increased and how it plans to reduce that number, and by when.
Ministers, it added, should set out the measures it will take to
improve access to and availability of community-based
alternatives to inpatient settings, including the additional
resources it plans to allocate to support this.
The Government, WEC said, should reestablish a national board
with a focus on improving health inequalities for people with a
learning disability and autistic people across all health and
social care services.
That board should include, and be led by, people with a learning
disability and autistic people, people with parental and caring
experience and health and social care professionals. Ministers
should grant the board the responsibility and accountability
necessary to drive change in health outcomes.
The report also warned people with a learning disability and
autistic people “face the widest employment gap of all people
with disabilities and find it difficult to get their foot in the
door”.
It called on the Government to publish a new disability
employment goal based on relative measures and set out how it
plans to achieve it; ensure that work to improve Disability
Confident and Access to Work includes reviewing the extent to
which those policies are helping employers to recruit and support
people with a learning disability and autistic people.
WEC recommended ministers exempt people with a learning
disability and autistic people who do not have an Education,
Health and Care Plan (EHCP) from the Maths and English skills
requirement for apprenticeships and roll out the autism
accreditation scheme in all Jobcentres.
Chair of the Women and Equalities Committee, Rt Hon
MP said:
“It is deeply concerning to see that health inequalities continue
to be significant among people with learning disabilities and
autism, including an unacceptable level of premature and
avoidable deaths compared to the general population.
“The Committee heard from people who struggled to convince
their GP to put them on the learning disability register and only
achieved success once the media and politicians were involved.
They should not have to reach that point, and not everyone will
feel empowered to argue their case or have access to such
advocacy to assist them. The system has to work better to
ensure all people with a learning disability have access to good
healthcare.
“The Government has fallen short on its commitment to halve
the number of people with a learning disability and autistic
people inappropriately detained in mental health hospitals.
It must learn from previous failings and increase support for
community-based alternatives to detention and do more to stop
people reaching crisis in the first instance.”
“On work opportunities, it is vital the Government acts to
close the unacceptably wide employment gap for people
with a learning disability and autistic people and sets out plans
on how to achieve this, with specific targets to measure
progress.”
