Self-advocacy for people with profound and multiple learning disabilities
Guest blog from Jan Walmsley on encouraging people with profound and multiple learning disabilities to be more involved in self-advocacy.
NEW
UK Covid Research
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.
Members of Pathways Associates talk about getting good information.
What the research found from people with learning disabilities themselves.
And how this compared to their experiences.
NWTDT / Pathways also held a conference about the research findings last December.
It was called Leave No One Behind.
You can listen to voice recordings of the sessions here:
Leave No One Behind – research findings
Leave No One Behind – people who feel they have been forgotten
Leave No One Behind – people who are still ‘shielding’
Self advocates from Connect in the Northlooked at mental and emotional wellbeing.
And talked about the impact on people’s mental health.
Cohort 2 of the research looked at the experiences of people with higher level support needs.
Vicki and Christian share their thoughts about the impact on them and others with greater support needs.
Watch Vicki and Christian’s video here
And Sarah Walker talks about the impact on her brother and their family.
Members of the Gr8 Support Movement talked together about their experiences as support staff.
And the impact on health and health services.
Watch support workers in the Gr8 Support Movement talk about the research here
The members also talked about the recommendations in the briefing.
Watch the people from the Gr8 Support Movement talk about the recommendations here
Learning Disability England held a free members webinar about the research findings and the policy brief.
It was called UK Covid Research: What have we learnt?
Not yet a member?
Why not join today and get involved with other members working for change.
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.
CQC publish review of DNAR during Covid 19: ‘Protect, respect, connect’
Today the Care Quality Commission (CQC) have published their report about the review of ‘do not attempt cardiopulmonary resuscitation’ (DNAR)decisions during the COVID-19 pandemic.
Read more “CQC publish review of DNAR during Covid 19: ‘Protect, respect, connect’”The different types of members
Choosing the right membership category for you
We organise our membership to reflect three different experiences and voices:
– Self-advocates (including self-advocacy organisations)
– Families and friends (including family carer and support organisations)
– Paid supporters and partners (including individuals who work in social care, service providers, commissioners, universities, development agencies and others)
Individual members can be:
– a self advocate with a learning disability
– a family member or friend of someone with a learning disability
– someone who works with people with a learning disability
– an ally who wants to be part of our national movement
Do you want to join as an individual?
What are self advocacy and family carer groups:
– 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 self advocacy or family carer group?
What are paid supporter organisations?
– paid supporter organisations get most of their income from delivering services
– they are organisations or companies who provide, commission or in other ways aim to improve the lives of people and families.
– they can be very small organisations or very large ones. The different membership rates mean organisations pay what they can afford
Do you want to join as a paid supporter organisation?
What are partner organisations?
– We know there are organisations with a much wider brief who have told us that they are also keen to support Learning Disability England’s work
– Partner organisations might be law firms, accountants, academic institutions, government departments etc
Do you want to join as a partner organisation?
Want to find out more about the benefits of membership?
Or find out more about our aims and values?
Speaking out and having a learning disability
A conversation between Shaun Webster and Gary Bourlet
Last week saw the end of the Learning Disability England Virtual 2021 Conference.
It was amazing to hear from so many inspirational self-advocates .
CQC Strategy Consultation – Learning Disability England Response
In January of 2021, The Care Quality Commission (CQC) released a Strategy consultation
You can find the easy read version of that online here
Join as a partner organisation
Other organisations with a much wider brief have told us that they are also keen to support Learning Disability England’s work.
We have therefore created a new category called Partner Membership to enable these organisations to join our movement.
We have therefore created a new category called Partner Membership to enable these organisations to join our movement.
Partner membership is open to organisations with a much
wider brief.
Organisations such as such as legal firms, universities, policy centres or similar.
Join now as a partner organisation by clicking here.
Or by phoning us on 0300 111 0444.
Membership fees for partner organisations depend on the size and type of your organisation.
Partner membership for Statutory, NHS or national organisations or national companies, such as local authorities and CCGs, is £995 per year
Partner membership for other smaller companies is £100 per year
Join as an organisation
Joining as an organisational member of Learning Disability England
Learning Disability England is England’s only national movement where people with learning disabilities, families, friends and people in paid supporter roles come together on an equal basis.
That’s because we are stronger and louder together! Together we work towards people with learning disabilities having good lives with equal choices and opportunities as others.
Organisational membership is for any group, company, organisation, local authority, regional/national board or collection of people who wants to become part of the movement.
Self Advocacy and Friends and Family organisational membership bands are for groups where the majority of their income is about voice or representation only. These are groups that have a structure of their own, for example a constitution.
These leaflets tell you a bit more about why you might want to and what it means to join the membership as a support provider or a micro-provider.
How to choose your category
To join as an organisation/group, your membership cost depends on your size and turn over.
You can see the different categories below.
When you join the membership through this online form, you can add the code that best fits your organisation or group.
If you would like to discuss membership in more detail, please do contact the staff team by email at: info@LDEngland.org.uk or by phone on 0300 111 0444
Why join as an organisational member?
You will be joining England’s only organisation that brings everyone together: people with learning disabilities, families, and professionals.
You will get weekly information, news, new ideas, resources, and webinars, which will be useful to your colleagues and people you support.
You will be making a statement of support for a brave, national movement working with people with learning disabilities for change.
You can influence and inform campaigning work with partners, government and members.
You will gain an opportunity to join our network of spokespeople, raising the profile of issues you care about.
You will get access to a plethora of events, meetings and conferences that will be useful to people throughout your organisation or group.
You will have a say in what LDE does, being able to shape the movement for change.
You will get weekly information, news, ideas, resources and webinars which will be useful to your colleagues and people you support.
You can find solutions to problems and new ideas through facilitated co-production and quality and improvement tools and networks.
You will be helping your organisation’s mission by: supporting work or campaigns that you agree with, contributing to a wider benefit to your community of interest or beneficiaries, helping change and improve what you do.
You will be part of facilitated problem solving networks or debates on issues that face people and organisations including policy and practice changes e.g. Learning Disability England Members have worked together on challenging the misuse of DNAR notices and directly influenced the work on stopping them.
Choosing and finding where to live: A How to Guide – Can you help?
Learning Disability England and Housing LIN are working together to make 2 guides.
This project is supported by NHS England.