Health & Social Care Select Committee Inquiry: Evidence from people with lived experience
Guest blog by Ivan Olbrechts, Representative Body family and friends member
NEW
A bit of history
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
COVID-19 and the Rights of Disabled People: Open statement from Disabled People’s Organisations and Allies
Today Learning Disability England has joined with 22 other organisations to send a Joint Statement to Matt Hancock (Secretary of State for Health and Social Care) Nadhim Zahawi (Under Secretary of State for Vaccine Rollout) and Simon Stevens (NHS CEO).
Our Aims and Key Documents
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
All work at Learning Disability England is moving towards this vision…
Membership is in 3 categories that Learning Disability England calls ‘voices’:
Self advocates with a learning disability, including self advocacy organisations
Family and friends, including family / carer support organisations
Paid supporters, including support provider organisations
Membership starts from just £12 for individual members.
What’s in a day – does Covid offer a once in a generation chance to rethink day support?
Guest Blog from Angela Catley, Director of Development at Community Catalysts
This blog contributes to the #SocialCareFuture debate.
Representative body
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
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
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’.
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.
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
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 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’.
Family and Friends Rep
Ivan Olbrecht
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.
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.
Paid Supporter Rep
Scott Watkin
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 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 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 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’.
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.
It is chosen by the Representative Body.
The Board Members are:
Debbie Neill is Director of Operations at Vibrance. Debbie has over 20 years experience working in health and social care, firstly in commissioning roles with Huntingdonshire PCT and Cambridgeshire County Council before moving into the private sector in 2003. Debbie’s area of interest and experience was the commissioning and delivery of community based services for adults and children with disabilities. She has been a trustee of Crossroads and a voluntary non-executive director for a not for profit organisation which provides social care support for adults with learning difficulties. Debbie has always held a strong interest in ensuring people are able to access community services regardless of their ability.
As Managing Director of Careforce, Debbie played an instrumental role in the successful floatation of the company on the Alternative Investment Market (AIM) of the London Stock Exchange. Debbie then led the growth and development of the business taking it from 24 to 52 branches through acquisition, successful tender bids and organic growth. She has held 2 other director roles in large support organisations.
Jan Walmsley is a self employed academic. Her particular interests are inclusive research, self advocacy, and the history of learning disabilities. In 1994 she co-founded the Social History of Learning Disability Research Group at the Open University which pioneered inclusive approaches to recording and sharing the history of learning disability – the Group celebrates its 25th Anniversary in 2019. Jan also coordinated the LDE Academics.
Jodie Williams is the Vice 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 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. Liz also works part time as a senior lecturer in social care at the University of Wolverhampton. She also set up and is a trustee and volunteer with the charity Jigsaw Events which provides people with social and leisure opportunities.
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 has been MD with Future Directions since it was founded. Previously worked as Director of Operations, Deputy Chief Executive and Director of Nursing in the NHS. Paula is passionate about ensuring Future Directions is a values led organisation and these values are lived out at every level of the organisation. Paula believes that living out the values will make a real positive difference to peoples lives. Worked as a Nurse Therapist and Nurse Consultant in medium and low secure care for a number of years. Moved to Pennine Care as Deputy Director of Nursing and was appointed as Service Director, Specialist Services in rehabilitation and high support, CAMHS and drug and alcohol services in 2007.
Chair of Trustees
Sarah is Learning Disability England’s Chairperson.
Sarah is also Chief Executive at Choice Support. Choice Support supports nearly 2,500 people with learning disabilities and other social care support needs. Sarah has worked with people with learning disabilities for almost 30 years. Her work began supporting people to move out of long stay institutions in the 1980’s. Sarah has been a training manager, an Operations Director and the Director of Quality and Safeguarding for Choice Support. Sarah is part of the steering committee for the Driving up Quality Alliance and a founder Board member of the Association of Quality Checkers.
Staff
We are a small staff team because we want to work alongside our members and bring people together, rather than trying to do everything ourselves.
Meet our team:
Bridget is a mum of 3 and works as our Office Manager 4 half days a week.
Bridget leads on our administrative and finance support and tries to organise us.
Gary has been a self-advocate for over 30 years and is a Co-Founder of Learning Disability England. Before this, he founded People First England.
Gary has a vast amount of experience in working with the media and has appeared on Channel 4 and in the Guardian. He is a civil rights campaigner and brought the People First movement to England.
Gary is a Membership and Engagement lead with extra focus as self advocate spokesperson.
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Kirstie is acting as Personal Assistant to Gary Bourlet whilst Anna is on leave.
Kirstie has a BSc degree in sociology, a Post Graduate Certificate of Education and a master’s degree in HR Management. She has previously enjoyed careers in both teaching and HR.
Kirstie is currently studying for a master’s degree in Autism Studies and tries to live by her core values of kindness, respect and fairness. She lives with her husband and their 4 teenagers, 1 dog, 3 cats and an ever-changing variety of goldfish.
Anna is currently on leave and is due to return in Autumn 2024.
Lesley is the Admin Assistant. She is the first point of contact for information and queries.
Lesley has two grown up children. She is a qualified teacher and as well as working for Learning Disability England, she works as a musician and piano teacher.
Tara is the Communications Officer. She leads on anything to do with communications and social media.
Tara has a background in running social media accounts for charities and organisations. She is also a trainee counsellor.
Tara has three children with learning disabilities. She is passionate about inclusion, diversity, and empowering people with learning disabilities to tell their stories, in their words.
Jess is the Operations Manager.
Jess joins us having worked within advice services since 2007 having worked in both local Citizens Advice services and national services as well as Leeds University Union advice centre.
She is passionate about working for people living better lives.
She lives in Bristol with her husband and two daughters
Dave is the Valuing People Alliance Co-ordinator for the Health and Wellbeing Alliance.
Dave has a background in project and programme management covering areas including learning disabilities, complex needs, and speech, language and communication.
Dave believes that we should all have access to the opportunities in life that can help us to be our best selves.
When the day’s work is done Dave likes to do his ‘daft’ illustrations.
Rachael is one of the Membership and Engagement leads at Learning Disability England, and has a joint role with JMS Trust as a Carers engagement worker with them.
Rachael has a master’s degree in Disability Studies from the University of Leeds. She has previously worked as a Personal Assistant and with disabled children within afterschool and holiday club settings.
Rachael is a family carer and is passionate about disabled people being included, accessing their rights and living independently.
Sam is the Chief Executive. She supports the members Representative Body and Trustees to lead Learning Disability England
Sam believes everyone has a contribution to make and is always looking for opportunities to collaborate and learn from other people. On her best days she goes swimming
About Us
Census 2021
In March, everybody in England and Wales will be asked to take part in Census 2021.
The census is run by the Office for National Statistics (ONS).
Everyone will get a letter inviting them to take part in early March.