The Down Syndrome Act 2022 is a law that means the government has to write clear guidance for public services like health, social care, and education on how to meet the specific needs of people with Down syndrome in England. 

The Down Syndrome Association estimates there are 40,000 people with Down syndrome in the UK. 

The government has now launched a draft of this statutory guidance and a public consultation to get feedback.  

You can read the draft guidance here.

The LeDeR report for 2023, published just yesterday, shows that people with learning disabilities and autistic people are still dying far too young – on average 20 years earlier than other people.

Other key findings from the report: 

• 4 in 10 deaths were avoidable – double the rate of people without a learning disability. 

• 1 in 3 people did not get the usual treatment for their condition or symptoms. 

• 2 in 5 people waited too long for tests. 

• People with learning disabilities often develop diabetes earlier and are more likely to get bowel cancer younger. 

• Having a learning disability nurse in hospital made a real difference, with people receiving better care and reasonable adjustments. 

Learning Disability England representative body members have responded to findings of the report: 

Gary Bourlet and Rachael Hall from Learning Disability England, attended Festibility last month, ‘Kent’s best accessible Music Festival’, to spread the Good Lives word and encourage others to join the movement. They share how it went in this latest blog…

FestAbility is more than just a music festival – it’s a celebration of joy, inclusion and community.

Held in Kent and set up by two incredible family members, Debs and Vanessa, FestAbility is designed to be fully accessible and welcoming for disabled people of all ages.

Kumudu and Amanda went to the Social History of Learning Disability Conference 2025 to learn from others and share the Good Lives framework.

We were so pleased to be part of such a brilliant programme which opened our minds to the many different ways that people with Learning Disabilities are reclaiming and retelling their histories.

You can find out more about the conference here.

This year was the 30th Anniversary of the Social History of Learning Disability (SHLD) Conference Programme, held on 9-10th July 2025.

The conference is about the importance of the stories, memories and histories of people with learning disabilities.

It’s a powerful place where people with Learning Disabilities record their own experiences and take up space in the archives and history books!

The Government have published their plans for how the NHS will work in the future.

It is called Fit for the Future: The 10 Year Health Plan for England

It has big ideas in it for making the NHS work better but also to help people live healthier lives.

You can read it here:

Fit for the Future: The 10 Year Health Plan for England    

Easy-read version   

Learning Disability England members were part of the consultations that led to this plan – you can read about that here.

Lots of things Learning Disability England members said are important are part of the plan.