Down Syndrome Bill: A Statement from the Members’ Representative Body

We are sharing this statement after consulting with members about the Down Syndrome Bill.

We have looked carefully at what members have told us.

We have then gone back to members to check the position we are taking.

After listening to members, we will only support the Bill if it includes all people with a learning disability.

What we think is important now 

Learning Disability England believes in a good life for all people with learning disabilities.

We would not wish to stand in the way of positive changes for anybody.  

We want to see the laws, policies and guidance we already have used properly. 

People with learning disabilities’ rights should be respected and people get the help they need. 

The bill will not change the laws we have now.  

It will offer guidance to local authorities.  

The people writing the guidance will have a lot of power.  

Learning Disability England wants any guidance to be co-produced with people with all types of learning disabilities and their families.

Most members have said they were not aware of the Bill or had not been involved in it. 

Members have said it is important that people with lived experience are at the heart of developing any guidance. 

We want the government to commit to making the guidance in an open and inclusive way.   

It should be based on the views of people with learning disabilities. 

The government has just published its White Paper called ‘People at the Heart of Care: Adult Social Care Reform’. It says: 

  • People have choice, control, and support to live independent lives.
  • People can access outstanding quality and tailored care and support.
  • People find adult social care fair and accessible.

If the government’s vision is delivered it would mean children and their families get good person centred support and education. 

And adults with learning disabilities of all ages get the right support and enough money to live good lives in their own homes in the community. 

We want the government to make sure Councils and the NHS have enough money to support all people with learning disabilities. 

A lot of members said they want to know about the Down Syndrome Bill or get involved. 

The National Down Syndrome Policy Group have put a call out on Twitter for more people with Down Syndrome to join in their work.  

You can read that here 

We will ask the group and Dr Liam Fox MP if they can help members get involved or learn more. 

We will write to the National Strategy Group and Liam Fox again and tell them about the members feedback. 

From the Learning Disability England Representative Body

Click here to find out more about the Representative Body