Joining as an individual 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 as equal people.
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.
Individual membership is for any individual person who has a learning disability, is a family member, a friend, in a Circle of Support or is a professional working in this area.
Joining LDE means you can give your opinions and get your voice heard. We are involved in many consultations, debates and policy work where your voice is important and people will listen to you.
These leaflets tell you a bit more about why you might want to and what it means to join the membership as a self-advocate or family member.
Why should I join?
You will be joining a group of people who also want people with learning disabilities to live good lives.
It is a way of telling people that you support a national movement working with people with learning disabilities for change to happen.
You can influence and be part of campaigning work with partners, government and members.
You will get good information, solutions to problems and new ideas from different meetings, conferences, webinars and resources.
You will be able to join our group of spokespeople, talking about the important things you care about.
How do I join?
Individual Membership (that’s Membership for 1 person) is only £12 a year.
If you don’t want to join online, you can download a Membership form and return it to us by post.
If you are an organisation or group run by self – advocates or family carers you can join as an organisation.
If you would like to talk this through with us, you can call on 0300 111 0444 or email us at: info@LDEngland.org.uk.
Our Spokespeople
We have spokespeople with learning disabilities, families and other experts who are ready to speak at events and to the media.
At Learning Disability England we believe society’s attitudes towards people with learning disabilities will not be changed until we see people speaking up for themselves, especially in the media and in politics.
All our spokespeople are members of Learning Disability England.
They have personal, lived experience either as a self advocate with a learning disability, as a family member or as a paid supporter.
We also use professionals when covering technical issues.
We have spokespeople because Learning Disability England staff do not speak for people with learning disabilities.
We believe people with learning disabilities and family members speaking for themselves will change the way society sees them.
If you would like a comment or an interview with one of our spokespeople, please contact Sam Clark, Chief Executive, on info@LDEngland.org.uk or 0300 111 0444.
If you would like to find out more about becoming a Spokesperson for Learning Disability England, please contact us on info@LDEngland.org.uk or 0300 111 0444.
Watch the video to listen to Gary Bourlet, now one of the Membership and Engagement Leads, talk about how he helped to set up Learning Disability England.
Learning Disability England was founded in 2016.
It is a registered charity.
For a long time people with learning disabilities have not been seen or treated as equals in society.
Self-advocate Gary Bourlet tried to change this by setting up a national self-advocacy organisation called People First England.
He was supported by Housing & Support Alliance, a charity promoting good support and housing for people with learning disabilities.
But both People First England and Housing & Support Alliance wanted to do more.
They wanted to do something new.
They could see change wasn’t happening fast enough because the learning disability sector was fragmented.
People weren’t working together.
Gary and the Housing and Support Alliance brought some like minded people together to create a movement for change.
These self-advocates, families and organisations worked with Gary and the Housing and Support Alliance to build Learning Disability England.
They made this new organisation a membership organisation where people signed up to the values.
Every member would be equal, whether it was a big support provider or a self advocate, with one vote each for decisions and elections.
The Founding Members are the organisations that helped build Learning Disability England.
We are very grateful for all their support, time and funding.
Learning Disability England’s Founding Members are:
Advance Aldingbourne Trust Avenues Trust BILD Brampton Brandon Trust Bromford Centre for Welfare Reform Certitude CHANGE Choice Support CMG Connect In The North Dimensions Essex County Council Essex Family Carers Network Foundation for People with Learning Disabilities Hft Inclusion North Kent County Council KeyRing MacIntyre mcch NDTi Paradigm Progress Housing Reside Housing Respond Swanton Care Three Cs United Response
Everyone was so pleased to hear last week that all people with a learning disability who are on a GP register can now receive the Covid-19 vaccine under priority group 6. Read more on that here.
Learning Disability England is bringing people and organisations together to create a movement for change where people with learning disabilities, families, friends and paid supporters come together on an equal basis.
As a membership organisation, members work together to build a world where people with learning disabilities have good lives with equal choices and opportunities as others.
We can’t name you all, but you are all very important.
The Vision for Change
The Vision for Change says the difference Learning Disability England wants to make.
All work at Learning Disability England is moving towards this vision.
Learning Disability England is working in partnership with Good Things Foundation and AbilityNet, VODG and other disability and digital inclusion organisations and community partners, to help people with learning disabilities get online.
This Digital Lifeline project is looking for organisations operating in England that support people with learning disabilities, including self-advocacy groups, community-based organisations to apply to help deliver the project.
The Representative Body represents Learning Disability England members and acts on their behalf, making important decisions about Learning Disability England says and does.
The Representative Body is an even split of 4 self-advocate Reps, 4 families and friends Reps, and 4 organisational Reps.
The members of the Representative Body make sure that Learning Disability England stays true to its values and is always working towards its goals.
Any member can put themselves forward to be on the Representative Body, and all members can vote.
The Representative Body is made up of these 12 elected representatives:
Kumudu Perera Self Advocate Rep
Kumudu Perera
Kumudu is a disability advocate for My Life My Choice and also works as a health ambassador.
He is also a phone buddy and represents people with disabilities.
Kumudu believes Learning Disability England is important because people with lived experience and knowledge about it are included as equals.
He wants to see a society where people with all kinds of disabilities work together with families and paid supporters to improve things ‘because if you’re trying to do things on your own nothing will change’.
Phil Hughes Self Advocate Rep
Phil Hughes
Phil says he has gone through most of his life with people judging him by the way he looks and how his body works. And had people talk to him like a child.
After too many years spent in a day centre, he got involved with Sunderland People First. Phil has helped get a changing place in the Royal Hospital. He looks into why disabled people die a lot younger, with the Stop People Dying Too Young group.
And he has made a video about dysphagia and the right to take his own risks. This is now used in hospital training for new SALT assessors.
Phil strongly believes in everyone having a voice. And has found people ‘who have a disability like me’ are often left out and are not given the opportunity to have a voice or support to voice their opinions and rights.
It’s because of this he decided to stand for the Rep Body ‘so that people with similar needs to me get listened to more’.
Jack Marshall Self Advocate Rep
Jack Marshall
Jack has Moebius Syndrome which impacts his life with a number of physical and learning disabilities.
From an early age Jack has spoken up for himself & others with regards to disability. He has raised tens of thousands of pounds for charity and challenges himself to seemingly impossible tasks.
Having attended special schools and been written off as non academic due to his learning disabilities, Jack fought for the right to go to mainstream college. He worked his way from a Foundation programme with some great support, and now Jack is at Stafford University studying Law.
Jack was awarded a British Empire Medal (BEM) in the New Year’s Honours List 2019 for his campaigning and fundraising.
Mary Woodhall Self Advocate Rep
Mary Woodall
Mary is a self advocate from south London. Mary is a campaigner with the group Campaign 4 Change, and also works part time as a receptionist for Premier Inn.
Mary is interested in politics and enjoys campaigning on different topics that matter to people with learning disabilities, such as the recent Campaign 4 Change lockdown campaign. Mary says teamwork is very important to her. She stood for election because she is passionate about making a difference, speaking up at a local and national level and listening to other people’s views.
Mary also enjoys knitting, arts and crafts and spending time with family.
Liz Wilson Family and Friends Rep
Liz Wilson
Liz lives in West Yorkshire. She has a daughter with learning disabilities who recently moved into her own Supported Living flat. She also had a brother who lived nearby until his death in 2022. Liz has managed direct payments for her daughter and brother.
Liz believes all people with learning disabilities are all different. She says she encourages her daughter to speak up for herself. But her brother didn’t use words to communicate so she says he and many like him need family to speak up for him and interpret his unique communication to those who don’t know him so well. Liz would like to find more and better ways for people who have lots of support needs to get involved and be heard.
Liz has had people with learning disabilities in her family for her whole life and has seen many policy changes. She says ’the thing that has never changed is the love and commitment of families who work so hard to make sure our loved ones have a good life’.
Liz has also spent most of her adult life working alongside people with learning disabilities and autism and their families. She recently retired and says ’I can confidently say I don’t just bring my own views to this role, I have many voices behind me’.
Kate Chate Family and Friends Rep
Kate Chate
Kate is a registered Makaton Tutor and a Family Consultant for Dimensions UK (a support provider). Kate sits on the Suffolk Learning Disability Partnership Board (Suffolk is where she lives) and she was a Parent Carer Representative for Suffolk’s parent carer forum for about 10 years. Kate is also a trustee for Ace Anglia.
Kate says she stood for election to the Rep Body because she has been inspired by so many amazing family carers to help make change for people with learning disabilities and their families. Including for her son.
Kate believes passionately in ensuring everyone’s right to a good ordinary life. She says she will ‘find Learning Disability England’s way of listening to families, and then bring as many new voices to that as possible. To make as much positive change as we can’.
Paula Strike Family and Friends Rep
Paula Strike
Paula has worked with children and adults with disabilities for 20years, as a teaching assistant and SENDco support. Now working across Essex with family carers, making sure they have the information and resources they need to advocate for their family member with a learning disability, Paula is able to share her knowledge and experience with others. This job also includes working with local authorities, health and social care to coproduce with families wherever possible; and challenge services who do not. Lived experience is the most valuable resource services can access, and Paula makes it her mission to remind them. She is particularly concerned with making sure everybody’s voices are heard by being creative with communication and sharing information
James O’Rourke Family and Friends Rep
James O’Rourke
James is older brother to Tony who was diagnosed at the age of 5 years with learning disabilities (although they didn’t call it that back then in the 1960’s!).
As you would imagine James’ life has been influenced by his brother’s learning disability.
Since leaving school James has had a wide-ranging career from residential/community social work to sales and marketing; politician to advisory roles for NHSE.
James’ passion is to ensure those with learning disabilities like his brother who have difficulties communicating are heard.
Nathaniel Lawford Paid Supporter Rep
Nathaniel Lawford
Nathaniel says he is a fan of people, stories and learning. Throughout his education including a masters in Globalization and fascination with philosophy, to his work from easy read trainer to inclusion director, to his volunteering as an academic speaker and activist researcher- he explains “I have in all things loved learning from, being with and living with the wonder that is humanity. For all lives matter and all wisdom should be cherished.”
Angela Catley Paid Supporter Rep
Angela Catley
Angela trained as a nurse for people with a learning disability in the 1980s, aged 18, doing most of her training in a big hospital where more than 500 people with a learning disability lived. Angela said ‘It was awful. It taught me what happens when we stop seeing people as equal citizens. This lesson has stayed with me my whole life’.
Since then, Angela has worked for lots of different organisations. Most of them were charities or social enterprises. A lot of her work has been with or for people with a learning disability and autistic people. Angela used to work for Community Catalysts, helping people think about the way people are supported. She still does that now working with others independantly
Angela believes people should be able to live life their way, following their dreams and getting their voice heard. She also has an understanding of all sorts of organisations and services and the challenges they face when they try to make this happen.
Angela says ‘I have good connections with lots of local authorities and with many smaller organisations too. I hope this might bring something extra to my role’.
Marianne Selby- Boothroyd Paid Supporter Rep
Marianne Selby-Boothroyd
Marianne is the Development Director at Certitude, which supports more than 1800 ‘awesome’ people across London. Marianne says that at Certitude she listens to the views and ideas of people they support, their families as well as colleagues, and works with them to influence how Certitude works and improves as an organisation.
Marianne says Certitude belongs to different networks and has good relationships with other support providers across the country. Marianne is also a Partners in Policymaking graduate and links in with lots of people nationally who have great experience and lots of knowledge and skills to share. She will use these networks and relationships to connect with members to identify shared issues, progress ideas and action as well as feedback what is happening.
Away from work, Marianne is mum to 3 boys who have additional support needs, and is the trustee for a parent led charity called Sparkles which provides speech and language therapy to children who have Down Syndrome.
Marianne says ‘through the networks of both Certitude and my own personal experience, I will seek to connect with and expand Learning Disability England membership’.
Tim Keilty Paid Supporter Rep
Tim Keilty
Tim has worked with people with a learning disability for 30 years, as a support worker in a village community, as a supporter to a People First group, an advocate, as a Person Centred Planning Co-ordinator and now as a Special Projects Manager. As the years go by the job titles get more cumbersome but the focus of work remains the same!
Tim has also worked on building sites, as a pub manager and as a cleaner – jobs which are as valuable to his experience as jobs in social care.
Tim works for New Prospects Association in North Tyneside, because he wanted to find out whether it was harder to actually make things happen than tell people how to do it. It is.
Tim is a qualified social worker, but puts more store in the fact that he was once described by Jack Pearpoint (admittedly in an off the cuff comment) as ‘a remarkably gifted leader’.
Tim writes a blog http://talesfromserviceland.blogspot.co.uk, has written a book with a colleague, is a Fellow of the Centre for Welfare Reform and always likes to share ideas and work together.
Board of trustees
The Learning Disability England board is made up of trustees/directors. The Board makes sure Learning Disability England does a good job and is chosen by the Representative Body.
The Board Members are:
Parmi Dheensa
Parmi Dheensa, is an award-winning social innovator and humanitarian, disability human rights activist and neurodiverse , sharing lived disability experiences with her youngest son, a disabled and adventurous changemaker.
Parmi is the founder and Executive Director of ‘Include Me TOO’ charity, working with disabled children, young people and their families from racialised and marginalised communities. She has overseen and developed a range of services, resources, training at local, national and international levels covering areas of intersectionality, participatory approaches, inclusive practice, policies, and safeguarding, for disabled children, young people and their families promoting a disability human rights-based ethos.
Parmi’s work has been dedicated to addressing discrimination through the lens of intersectionality and many years as a anti-racism consultant and advocate. Her work focuses on enabling others, increasing their access to spaces to share their experiences to challenge systematic and structural barriers and hierarchy to reduce inequalities and end discriminative practices.
Kristiina Cooper
Kristiina is a journalist at the BBC, a volunteer for the advocacy charity, VoiceAbility and mother to George, 16, who has Down’s Syndrome. She’s committed to ensuring people with learning disabilities lead fulfilling lives and believes the best way to overcome challenges is to join forces with like-minded people.
She works at BBC Westminster where she’s been reporting on politics for over 30 years. She’s an experienced editor, writer and broadcaster with a specialist knowledge of Parliament, public policy and the law-making process. She’s gained a great deal from her voluntary work at VoiceAbility where she’s supporting adults with learning disabilities to become self-advocates.
When Kristiina isn’t spending time with family she’s catching up on her reading, walking in the Hampshire countryside or trying to learn Finnish.
Jordan Smith
Jordan has many lived experiences and is a self-advocate who lives in Colchester in Essex. He is a former self advocate representative body member and former co-chair of the representative body of learning disability England.
He currently is a quality consultant at Dimensions UK and chair of Dimensions council.
Jordan is passionate about people with learning disabilities having good lives working alongside their families, friends and their supporters. He also wants to see people who don’t use words and use other ways to communicate and have complex needs to have the right to a good life too. In Jordans spare time he coaches and plays football with other people who have a learning disability or are autistic. He loves cake
Chris Maxsted
Chris has a background in the Civil Service and consulting and joined us as a Trustee in 2025. Chris thinks that the work that LDE does is so important for people across the country. Chris’s personal experience has led him to follow a professional path that is linked to learning disabilities. Currently a Director at a company (IMPOWER) that supports councils to deliver better outcomes and previously a civil servant. As an individual, Chris has experience supporting and working with people with learning disabilities throughout his life. His older brother has Down’s Syndrome and he has also volunteered with a number of charities that help people with learning disabilities including MENCAP and Keen.
Jodie Williams (Co Chair of Trustees)
Jodie lives in Sunderland which is in the North East of the country. Jodie says: People say that I am hardworking and very reliable, I do great job of supporting other people, brilliant at using different ways of communicating with people, am kind and generous and have a great sense of humour.
I am a Director of a company called Sunderland People First which is a self-advocacy company. The work I do there is to support others to have a voice, to make sure that people with a learning disability have good lives. I have lots of experience of working with organisations that deliver services and support people with learning disabilities, for example other community/ self-advocacy companies and groups, NHS England, Local councils, and local CCGs and Health trusts. I am really involved in Transforming Care work locally, regionally and nationally and have been an expert by experience advisor at Care and Treatment reviews since the Transforming Care Programme began in the North East back in 2014.
Other work I do, extra to my work at Sunderland People First, am an expert advisor on the NHS Learning Disability and Autism advisory group and a Director for Inclusion North.
I am delighted to be a trustee with Learning disability England as I want to make sure that lives of people with a learning disability are improved and people are heard and that the government listens.
Lisa Hopkins(Co Chair of Trustees)
Lisa is Chief Executive at SeeAbility. SeeAbility is a charity which supports people with learning disabilities, autism, and sight loss. Lisa began her career in Canada as a Support Worker and subsequently became a Behaviour Consultant working alongside people whose behaviour was described as challenging. Prior to taking up her role at SeeAbility, Lisa was Managing Director at Dimensions UK, where she worked for 9 years.
Liz Tilly
Liz is strongly committed to the full inclusion of people with learning disabilities in all aspects of life, and has had regular professional and social contact with people with learning disabilities for over 40 years. Liz is the founder and director of Building Bridges Training, a social enterprise of people with a learning disability which provides training and does research focused on making a difference to people with a learning disability.
Previously she founded and for twenty years was Chief Executive of a voluntary organisation in the West Midlands which provided a wide range of services and opportunities for people with learning disabilities. Prior to this, her career was in special education.
Paula Braynion
Paula became a trustee of Learning Disability England as she believes in our mission and values and wants to ensure that people with learning disabilities voices are hard and not only heard but listen to so can make it a better world. When not being a trustee of LDE Paula is Managing Director of Future Directions CIC and believes passionately that key to success in any organisation is to ensure that it is values driven. That these values are more than words but lived out at every level. Paula absolutely loves being a trustee and MD of Future Directions CIC however it can be stressful at times so to deal with stress Paula teamed up with couple of work colleagues to form a band The Leaping Frogs who enjoy playing music that is upbeat and connects people.
