Learning Disability Week: the real issues we should be talking about

Learning Disability Week is a great opportunity to celebrate the positive contributions within the sector and the achievements of self-advocates. However, it is equally important to recognise the serious and sometimes life-threatening challenges faced by individuals with learning disabilities.

At this time, it feels like the government is doing widespread damage to the quality of life of disabled people as well as dismantling their current rights. This sector has always needed much more from the establishment, yet we are in a situation where we are receiving much less.

Furthermore, many of these challenges have continued for years, showing little sign of resolution despite repeated assurances and promises from those in power. Here are some of the main issues currently in the media.

Health inequality and premature deaths

It is well documented that people with a learning disability die much earlier than the rest of the population, and they are much more likely to suffer preventable deaths. This is why the LeDeR (Learning Disability Mortality Review) programme, led by NHS England, which looks at the lives and deaths of people with a learning disability, is so essential.

However, the latest report has been delayed, making it hard to ascertain where progress has been made and what still needs to be a major improvement focus.

The 2022 LeDeR (also late and finally published in November 2023) found that 42% of deaths were deemed “avoidable” for people with a learning disability. Although still frighteningly horrific, this was lower than the 50% figure in 2021.

These are beloved family members who could still be living meaningful lives today if some lessons had been learnt from previous reports. The delay of such a crucial report, which has a significant impact on the lives of people with a learning disability, is deeply worrying and unfair.

Annual health checks and learning disability

There have been recent rumours that the government is considering de-prioritising annual health checks for people with a learning disability.

The Mencap Big Survey last year found that over 40% of those surveyed have not had an annual health check in the past year, and of those who did, nearly 60% did not receive a health action plan.

According to NICE, people with learning disabilities may not recognise that they are unwell or may be unable to communicate how they feel. They may also develop conditions or face challenges that are associated with the learning disability. The annual health checks for people with a learning disability differ from NHS health checks and include a more specific and detailed examination of a person’s physical and mental health.

Carrying out these checks ensures that health issues are identified early, support can be provided promptly, and the person’s health action plan is up to date. As a preventive intervention, there is evidence to show that these checks can improve survival rates.

In addition, the Race Equality Foundation and Learning Disability England have recently established annual health checks as a critical tool in reducing the inequalities in health for Black, Asian and minoritised ethnic communities.

This is because the We deserve better: Ethnic minorities with a learning disability and access to healthcare report revealed people with a learning disability from Black, Asian, and minoritised ethnic backgrounds face an increased risk of earlier death, at an average age of 34 years compared to their White counterparts, who have a life expectancy of 62 years of age.

Welfare reform

In March, the government announced that it would significantly cut disability benefits. This was unveiled in the Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper.

The aim was to unlock economic growth by saving £5 billion by 2030 and opening up employment opportunities for future generations with £1 billion worth of employment support measures to help disabled and long-term sick people return to work.

This week, the government unveiled the new Universal Credit and Personal Independence Payment Bill, which was universally condemned as “catastrophic for disabled people”. It also led Labour MP Vicky Foxcroft to resign as a whip over the government’s plans to cut disability benefits.

Research produced by the food bank charity Trussell shows that if the UK government goes ahead with planned cuts to social security, 440,000 people in disabled households will be forced into severe hardship and at risk of needing a food bank in 2029/30.

Further rumours circulated this week, published in Disability News Service, that Labour ministers are considering whether to start means-testing personal independence payments. New information secured from the Department for Work and Pensions (DWP) has revealed that this will likely cut billions of pounds annually from benefits spending.

MPs are thought to have their first vote on the Bill on 3 July 2025.

Mental Health Bill and learning disability

Another essential piece of legislative change is the reform of the Mental Health Act 1983. The reforms aim to improve patient rights and address historical inequalities.

Under the Mental Health Act (MHA), autism and learning disabilities currently fall under the definition of “mental disorder”. This means that people with learning disabilities and autistic people can be detained for assessment under section 2 MHA and for treatment under section 3 MHA. A person with a learning disability can only be detained under section 3 where their learning disability is “associated with abnormally aggressive or seriously irresponsible conduct”.

The new draft Mental Health Bill removes learning disabilities and autism as conditions for which people can be detained for treatment in some circumstances.

NHS England 2024 data shows that 2,050 people with learning disabilities and/or autism were inpatients in mental health hospitals. In addition, many are placed miles away from family and friends and in settings that are totally unsuitable to their needs. In the past decade, there have also been increasing reports of abuse, overmedication, seclusion, and the use of unnecessary restraint in these units.

Proposals do not go far enough

In May, the Joint Committee on Human Rights (JCHR) raised concerns that new proposals in the Mental Health Bill do not go far enough to prevent autistic people or people with learning disabilities from being detained for these conditions alone.

Following legislative scrutiny of the Bill, the Committee said that unjustified detention could still occur due to inadequate community support.

The report added that it is widely recognised that learning disabilities and autism are lifelong conditions, not mental illnesses that can be removed through treatment. As a result, there is an inherent lack of justification for detaining a person for treatment based only on their learning disability or autism, making such detention vulnerable to challenge under Article 5 of the European Convention on Human Rights.

Assisted Dying Bill

MPs are currently debating the final stage of the Terminally Ill Adults (End of Life) Bill, which could legalise assisted dying in England and Wales. The vote will take place later today.

The Bill would allow terminally ill adults with six months or less to live to get medical assistance to end their own lives.

In February, the National Down Syndrome Policy Group (NDSPGO) and over 61 organisations representing the interests of disabled people across the UK wrote an open letter raising concerns about the potential impact of legalising assisted dying.

Last week, the Royal College of Psychiatrists (RCPsych) called on MPs to consider serious concerns about the Terminally Ill Adults (End of Life) Bill for England and Wales, ahead of the pivotal Commons Report stage debate and Third Reading.  

With too many unanswered questions about the safeguarding of people with mental illness, the College has concluded that it cannot support the Bill in its current form.

It said that the Mental Capacity Act does not provide a framework for assessing decisions about ending one’s own life. It added that people with intellectual disabilities (learning disabilities) are more vulnerable to coercion and can find it difficult to fully understand the concept of death.

Separating physical and mental health conditions for this population requires considerable expertise, skills and time. Any assessment in this context would need to be carried out by those trained in this field, but we do not currently have enough consultant psychiatrists to do this.

Social care is still neglected

The government has been accused of kicking much-needed social care reform into the long grass after announcing this year that an independent commission would start work on addressing the inherited challenges.

The commission, headed by Baroness Louise Casey, will set out a vision for adult social care, with recommended measures and a roadmap for delivery. The aim will be to create a National Care Service underpinned by national standards, delivering consistent care nationwide.

A cross-party group of MPs, however, recently said that social care will fail unless it measures the actual human and financial cost of inaction on social care instead of just emphasising the cost of reforming it.

The Health and Social Care Committee Inquiry looked to understand the cost of successive governments presenting reform ideas for adult social care and not implementing them.

It found that taxpayers are currently paying £32 billion a year for a broken system, and the government needs a robust financial case for reforms to prevent users from continuing to suffer under the current unsustainable system.

SEND reform

Last, but not least, children with learning disabilities are likely to be negatively impacted by the Department of Education’s planned special educational needs and disabilities (SEND) reform.

The Treasury confirmed in the Spending Review that the details will be set out in a Schools White Paper in the autumn.

For months, rumours have circulated that ministers in England are considering changes to education, health, and care plans (EHCPs) that could limit their use to children in special schools.

This would mean that hundreds of thousands of children with SEND would miss out on the legal document detailing the special educational provision a local authority must provide.

Obtaining an EHCP grants legal entitlements and protections, which can be enforced through an appeal to the SEND tribunal, judicial review or other means. An EHCP also provides parents or young people with a conditional right to choose their preferred school or college. Schools have no legal duty to meet a child’s specific needs without one.

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This is just a snapshot of the current issues affecting people with learning disabilities. To find out more, please visit our debate section.