The Challenging Behaviour Foundation

Ahead of the government’s plans to reform SEND, the Disabled Children’s Partnership is calling for a system that works for children, young people and families - not against them.

You can read more here:
www.theguardian.com/education/20...

@dcpcampaign.bsky.social #SEND #FightForOrdinary

If you have been affected by any of the issues raised in this report, you can call the Family Support Service on 0300 666 0126 or email us at support@thecbf.org.uk (Open: Mon -Thurs: 9am – 5pm | Friday: 9am – 3pm)

The Department of Health and Social Care and NHS England must take significant action to address these health inequalities, or people with learning disabilities will continue to die when they should not.

To stop people dying too soon we must see an urgent focus on improved care and coordination for people with learning disabilities – understand how to communicate with individuals and their families, listen to what they have to say, make reasonable adjustments, and make specialist support available.

1 in 4 deaths of people with severe or profound and multiple learning disabilities were treatable – meaning that, they could have been avoided through timely and effective healthcare interventions. This is a huge health inequality and failure of care.

The updated report shows that 40% of deaths of people with learning disabilities were avoidable, double that of the general population.

Following the delays to publication in the first place, this raises questions about how seriously DHSC and NHSE are taking the collection and analysis of data on the deaths of people with learning disabilities. The people who died and their families deserve better.

Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR) | King's College London The latest annual LeDeR report in collaboration with our academic partners on behalf of NHS England.

The updated version of the LeDeR report has been published this week. The original report, published in September, was withdrawn because information about the cause of more than 200 deaths was missing, meaning whether they were preventable could not be analysed. www.kcl.ac.uk/research/leder

We’re calling on Government to end the cliff edge, to ensure personalised support is available to families that allows them to focus on what's possible, not just what's available.

Too many families describe the transition to adulthood as something they had to navigate alone, isolated, unprepared and without adequate support for their young persons’ transition from child to adult services. It doesn’t have to be this way.

Take action: sign our open letter to government now Demanding change for young people with a learning disability, and their families, during their transition to adulthood.

Over 290 people have signed our open letter!
Your signature can help ensure that every young person with a severe learning disability navigates the transition to adulthood with confidence and proper support.
✍ Sign the open letter bit.ly/3J9oO8u
#EndTheCliffEdge #TheCBF #KIDS

(5/5)Action is needed now, including addressing the decline in learning disability nurse numbers, ensuring hospital passports are properly understood and used, and consistently putting reasonable adjustments in place.

www.learningdisabilitytoday.co.uk/news/leder-w...

(4/5)There continues to be too many avoidable deaths, including cases where, if better care and coordination were available, people with learning disabilities would not have died. While it is vital that the report is accurate, this must not delay any action taken by the NHS and other organisations.

(3/5)Steps must be taken to ensure data issues like this do not happen again. While it is vital that the report is accurate, this must not delay any action taken by the NHS and other organisations.

(2/5)The data in the LeDeR report represents lives that have been lost, in many cases due to poor care. Given the long delay in approving the publication of the original report, the Department of Health and Social Care and NHS England must ensure the revised version is published as soon as possible.

LeDeR withdraws its 2023 report due to newly discovered data issues - Learning Disability Today LeDeR is withdrawing its 2023 annual report and an updated version will be published in January 2026 due to a technical issue within the data supplied by the South Central and West Commissioning Suppo...

(1/5) The most recent ‘Learning from Lives and Deaths – people with a learning disability and autistic people’ (LeDeR) report has been withdrawn so that the LeDeR team can update their analysis after information around the cause of death of some people with a learning disability was missing.

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CBF Statement on DforE guidance on restrictive interventions On Thursday 18th December, the Department for Education published updated guidance for schools in England on ‘Restrictive interventions, including use of reasonable force, in schools: Guidance for…

The DfE has published revised guidance on the use of force and restrictive interventions in schools. Whilst the CBF welcomes the changes, we are still calling for the development of mandatory national training standards as a matter of urgency. www.challengingbehaviour.org.uk/news/cbf-sta...

Mental Health Bill becomes law – CBF statement Following years of campaigning by families, people with learning disabilities and autistic people, the Mental Health Bill has finally received Royal Assent. The law will change so that people with lea...

We pay testament to the determined campaigning of family carers, people with learning disabilities and autistic people which has led to this change. Now the Government must begin the urgent work to co-produce and deliver good community support to make this law a reality.

The law will change so that people with learning disabilities and autistic people cannot be detained in mental health hospitals unless they have a mental health condition that needs treatment.

Following years of campaigning by families, people with learning disabilities and autistic people, the Mental Health Bill has finally received Royal Assent.

Peer support at the CBF The CBF is offering free peer support for family carers from your own homes during the Coronavirus pandemic.

Our Peer Support Services are here for you. A safe, confidential space to talk, share, and connect with other family carers who truly understand.

Click the link below to find our more.
www.challengingbehaviour.org.uk/for-family-c...

For fathers, uncles, and brothers of someone with a severe learning disability, the emotional toll can be especially heavy. The love is deep, but so is the pressure. The quiet moments of worry. The feeling that you have to be the strong one — always. You don’t have to carry it alone.

🧠 November is Men’s Mental Health Month 🧠
Men are often offered less emotional support than women, and many feel they have to “just get on with it.” But mental health doesn’t discriminate — and neither should support.

Listening Ear – Be heard Book an appointment to chat or offload your worries with someone who understands.

The service is open to parents, carers, siblings or close relatives of children, young people and adults with severe learning disabilities who display behaviour that challenges. Because sometimes, talking to someone who truly gets it makes all the difference.

📞 Listening ear calls – Be heard 👂
Our Listening Ear service is a free, confidential active listening service, provided by trained family carers who understand what you’re going through. This is a safe, non-judgmental space for you to offload any stresses or worries.

Disabled people at risk from 'back door' law change, say charities The Supreme Court has been asked to revisit a previous ruling it made on what it means to be deprived of liberty.

(2/2) The hearing has now taken place in the Supreme Court over three days. You can find out more about the hearing in the BBC article below. We will update on the judgment of the case when it is published. www.bbc.co.uk/news/article...

A Reference by the Attorney General for Northern Ireland of a devolution issue under paragraph 34 of Schedule 10 to the Northern Ireland Act 1998 - UK Supreme Court Does the Minister of Health for Northern Ireland have the power to revise the Deprivation of Liberty Safeguards Code of Practice (“the Code”) so that persons aged 16 and over who lack capacity to make...

(1/2) Last week, we shared a post about an upcoming legal case concerning the rights of people who lack capacity to consent to their care arrangements. The hearing has now taken place in the Supreme Court over three days.
www.supremecourt.uk/cases/uksc-2...

Independent scrutiny of restrictions that are put in place as part of a care and support plan, such as the use of restraint, are vital in order to uphold the rights of people with severe learning disabilities
www.mencap.org.uk/press-releas...

It's vital that family carers have a route to challenge their relative’s care support if they don't feel that they're in their best interest/are too restrictive. Individuals with severe learning disabilities whose behaviours challenge are at greater risk of isolation, restrictive practices & abuse.