At learning Disability England, we want to work with all our members to get their voices heard and to tell people what is important to them.
This page tells you about being a spokesperson. You can sign up at the bottom.
What is a spokesperson?
A spokesperson is someone who speaks out about different issues. They do this to help make changes happen. We want self-advocates, families and staff from organisational members to be spokespeople for LDE. We know our members have lots of skills, knowledge and experience. We want to make sure you can have your voices heard on topics you are passionate about.
What kind of things will I be asked to do?
There will be different ways to speak up. Some people will want to speak out in lots of places. Some people will want to just speak out in one way. We need people who can tell us what they think for our news updates. We need people who can go to meetings. We need people who want to talk to journalists. You can tell us the types of things you would like to do and the things you don’t want to do.
Do people have to know people my name?
A spokesperson is someone who speaks out about different issues. They do this to help make changes happen. We want self-advocates, families and staff from organisational members to be spokespeople for LDE. We know our members have lots of skills, knowledge and experience. We want to make sure you can have your voices heard on topics you are passionate about.
What kinds of things can I talk about?
We want to know what our members know. Please tell us what you know about. This might be things like;
Funding
Housing
Health Care
Assessment and Treatment Units (ATUs)
How will it work?
When we need a spokesperson, we will look at our list and see who’s interests match the work. We will contact you to ask if you are interested in taking part. You don’t have to be involved in everything, only the things you want to or when you have time.
Your personal information will only be shared outside of Learning Disability England with your permission.
I might need some support?
We would be happy to support you be a spokesperson. We might support you to plan and write what you think. We might help you to claim expenses for attending meetings.
You can tell us what kind of support you would like when you sign up.
How do I sign up?
A spokesperson is someone who speaks out about different issues. They do this If you are interested, click here to sign up.
The Chair of the United Nations Committee on the Rights of Persons with Disabilities also issued a joint statement on persons with disabilities and Covid-19.
The template can be changed to add your personal details.
We carried out a ‘snapshot’ survey at the end of April to find out the experiences of our members and DNAR during the pandemic. Read the Full Report and Easy Read here
Read the Case Studies some of our members gave us as part of the survey.
88 organisations filled in a snap shot survey in late April. They told us about Do Not Attempt Resuscitation (DNAR) decisions during coronavirus for the people they support.
The survey found that approximately two thirds of the organisations replying did not report an increase in DNARs in 2020 for the people they support.
But some organisations said DNAR decisions had been made either on groups of people or on individuals without consultation with them, their loved ones or the people who support them. This was not in accordance with guidance and best practice, and in some cases could be illegal.
Some DNAR decisions had been made without a person or their supporters being involved.
8 organisations had seen DNARs placed in people’s records without consultation in March, and despite the publicity and clear guidance, 10 reported this happening in April.
The Representative Body Co Chairs Wendy, Scott and Jordan said
“Decisions on people’s treatment being made based on them having a learning disability are never OK – even one is too many. We are pleased to hear there are examples of people and their supporters being positively involved but we want to see all lives valued and people not fearful of others writing them off”
Organisations had been able to help people get bad DNAR decisions changed.
We are clear that DNAR decisions can be the right thing for some people or situations. We do not want people to be afraid of thinking and talking about advance care planning and DNAR, or of making the choice that is right for them.
Learning Disability England is now working with some members on additional resources that can support people to challenge poor processes or unlawful use of DNARs.
During 2020 and 2021, researchers from 12 universities joined together to do a study on how the coronavirus pandemic has changed the lives of people with learning disabilities in the UK.
There have been lots of studies done on the pandemic.
But not many that people with learning disabilities can easily be involved in.
This research heard from people with learning disabilities about their own experiences.
And the research team was helped by an Advisory Group of people with learning disabilities.
The research findings have given some really important information about how people with learning disabilities have been affected by the pandemic.
The plan was always that the information that the researchers found out would then be shared with people who can help to make positive changes.
So the research team has worked with people with lived experience to create a Policy Brief for England about the findings.
The Policy Brief highlights the findings people with learning disabilities and family members in England have said are the most important for policy and practice.
People with learning disabilities have also worked with family members, self advocacy groups, paid supporters and partners to make a series of videos with their thoughts about the policy briefs and what they have told us.
You can watch the videos here:
Members from Speak Up explain what the research was about.
And talk about some of the things the research told us about employment and family carers.
If you have any questions about the research, please contact the Learning Disability England staff team by email on info@LDEngland.org.uk.
Or phone 0300 111 0444.
How we work
Learning Disability England wants to be led by its members, so that we do what matters to people with learning disabilities
Learning Disability England is made up of:
Members – people with learning disabilities, family members, professionals, allies, organisations of any kind that share our aims
The Representative Body – these are 12 people elected by the members. They work in partnership with the Trustees and lead on some decisions. These include deciding on who can be members, choosing the Trustees, making sure LDEs work is based on what is important to members and its values.
The Board – the Trustees are a group of 8 – 10 people who have the job of making sure LDE is following the law and legal responsibilities. They work in partnership with the Representative Body and lead on some decisions. They make sure LDE has enough money, operates lawfully, employs staff, and keeps everyone involved safe.
If you want to read more about the governance arrangements of Learning Disability England you can read an easy version of our Articles of Association.
– your organisation is led by self-advocates and/or family members
– if your self-advocacy or family run organisation gets most of its income from delivering services rather than doing self advocacy and/or family voice support, then you will be part of the paid supporter category.
Do you want to join as a paid supporter organisation?
Learning Disability England has been working with self advocates and the British Institute of Human Rights to ask the Ministry of Justice to make accessible versions of the consultation.
