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 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 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 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 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 lives in West Yorkshire. She has a daughter with learning disabilities who lives with them but is looking for her own place. She also has a brother who lives nearby. Her brother has a direct payment for 24/7 support and Liz employs and manages the team for him.
Liz believes all people with learning disabilities are all different. She says she encourages her daughter to speak up for herself. But her brother doesn’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 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’.
Ivan’s family name comes from a Flemish refugee, originally evacuated to Kent as a wounded Belgian soldier in WW1.
Ivan spent his early years growing up in a post-WW2 prefab in Kent, in the 70’s, raised on free school meals and taught in the “remedial group” in primary school.
His upbringing was punctuated by his late mother’s frequent bouts of mental illness and visits to a long-stay psychiatric hospital.
Ivan is a family carer for a relative with Phelan-McDermid Syndrome (PMS).
Ivan has worked as a postman, a soldier, a manager of children’s services, and now works for a national health and social care charity that provides services to people with Learning Disabilities, Mental Health and complex needs.
Ivan also attends the All Party Parliamentary Group on Complex Needs and Dual Diagnosis and has academic research interests in a number of areas, especially health inequalities.
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.
Scott was the Co-Chair of the Learning Disability Partnership Board on the Isle of Wight and he chaired the Partnership Board for six years.
Scott took on a national role within the Department of Health in May 2009 as the Co-National Director for Learning Disabilities until June 2011.
Scott has worked for Mencap as a National Learning Disability Consultant. He joined SeeAbility eye2eye Ambassador and is now their Head of Engagement, leading a programme of work around the people they support having a bigger voice.
Scott is also Co-Chair of the Transforming Care Assurance Board to help reduce the number of people with learning disabilities staying in hospital and to go back in the community; and is a visiting Lecturer at the University of Hertfordshire working with the learning disability nurses.
Scott won the ‘Making a Difference’ award at the National Learning Disabilities Awards in July 2017. Scott was awarded the British Empire Medal (BEM) on the New Year’s Honours List 30th December 2017.
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 now works for Community Catalysts, helping people think about the way people are supported.
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 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 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.