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WEC calls on Government to investigate why eligible people are not on the learning disability register

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.

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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.

Conclusions and Recommendations

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 comment

Chair of the Women and Equalities Committee, Rt Hon Caroline Nokes 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.” 

Further information

Channel website: http://www.parliament.uk/

Original article link: https://committees.parliament.uk/committee/328/women-and-equalities-committee/news/201620/wec-calls-on-government-to-investigate-why-eligible-people-are-not-on-the-learning-disability-register/

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