National self advocacy gathering

 

 

 

With the help of the North West Regional Forum and NWTDT / Pathways team in February Self Advocacy groups from across the country got together.

This convention ran alongside the North West annual self-advocates conference

 

About 40 people came from as far away as Brighton and Sunderland (and in between) to Blackpool for 3 days working together, sharing ideas and building networks

 

We will share the reports and actions on this page and updates as we go along

Sunderland People First did a session on what difference advocacy makes. They asked us all to share self-advocacy groups’ work or self-advocates on a hashtag so people can start to see #SelfAdvocacyWorks – please join in if you can

Speak Up did a session on Citizen Advocacy

CHANGE did a session on peer support

 

Notes Reports & Presentations

 

Please click here to view notes on the Benefits of self-advocacy

Please click here to view the notes on the Barriers to self-advocacy

Jan Walmsley prepared a report for My Life My Choice and as part of her work sharing the self-advocacy tool kit with Alan that they developed in Wales. Please click here for Jan’s report

Gary Bourlet has written a short blog sharing his thoughts and impressions about the convention. Please click here to view

Sam Clark has written a short blog about the self advocacy convention in Blackpool in February. Please click here to view

Gary Bourlet presented a session on Falling through the gaps which people or groups we think are missing out on advocacy – you can see the notes and what people are doing or want to do to make it possible for everyone to get advocacy or get involved in self-advocacy.

 

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Conference Pop-ups

Oup Pop- up Sessions

Pop- Up Sessions 10.15 - 10.45
Our way of checking Quality
The Association of Quality Checkers (AQC) is a non-for-profit organisation dedicated to supporting the work of Quality Checkers with disabilities. We believe that people who have experience of services are in the best position to judge quality. Join the directors from The Quality Company and Choice Support to see how we check quality our way!

Click for session presentation
LB Toolkit
The session charts the story of Connor Sparrowhawk which inspired the toolkit. From its inception to the actual toolkit and how accessible information can enable people who have communication difficulties have their voice heard without having a professional advocate directly involved. The use of the toolkit enables people to take their time in developing their understanding of the complicated process of a social care assessment explaining issues within the Care Act and Mental Capacity Act. People can choose to do this themselves, with people they trust or with professionals.
The unique things about the toolkit is that not only does it give easy to understand information, it also prompts and offers space for people to express their feelings, wishes and needs with every booklet.

Our Justice for LB Toolkit was created from feedback from those who have benefited from our support, those with learning difficulties and those who have undergone care assessments.

Click for session presentation
The NHS Long Term Plan: building partnerships
The NHS Long Term Plan was published on 7 January. In this session, talk to member of the NHS England learning disability team about the Long Term Plan and how they can work with people to get the best results. Hear about the main things in the plan and share your ideas about who should be involved and how.

Click for session presentation

Please click for session notes
Great Communities
A partnership project between MacIntyre, Community Catalysts CIC and the people of Warrington. Finding ways to help and include people who don’t get the care and support they need…people who fall through the gaps.
We are:
• Identifying people who are falling through the gaps
• Engaging them and other local people and organisations - working in partnership
• Focussing on the good stuff - making the most of Warrington’s assets, especially its people
• Enabling people falling through the gap to live a good life, connected to and contributing to their community
• Seeing if the learning can be used elsewhere
Click for session presentation

Conference Pop-up Sessions

Pop- Up Sessions 10.15 - 10.45
Our way of checking Quality
The Association of Quality Checkers (AQC) is a non-for-profit organisation dedicated to supporting the work of Quality Checkers with disabilities. We believe that people who have experience of services are in the best position to judge quality. Join the directors from The Quality Company and Choice Support to see how we check quality our way!

Click for session presentation
LB Toolkit
The session charts the story of Connor Sparrowhawk which inspired the toolkit. From its inception to the actual toolkit and how accessible information can enable people who have communication difficulties have their voice heard without having a professional advocate directly involved. The use of the toolkit enables people to take their time in developing their understanding of the complicated process of a social care assessment explaining issues within the Care Act and Mental Capacity Act. People can choose to do this themselves, with people they trust or with professionals.
The unique things about the toolkit is that not only does it give easy to understand information, it also prompts and offers space for people to express their feelings, wishes and needs with every booklet.

Our Justice for LB Toolkit was created from feedback from those who have benefited from our support, those with learning difficulties and those who have undergone care assessments.

Click for session presentation
The NHS Long Term Plan: building partnerships
The NHS Long Term Plan was published on 7 January. In this session, talk to member of the NHS England learning disability team about the Long Term Plan and how they can work with people to get the best results. Hear about the main things in the plan and share your ideas about who should be involved and how.

Click for session presentation

Please click for session notes
Great Communities
A partnership project between MacIntyre, Community Catalysts CIC and the people of Warrington. Finding ways to help and include people who don’t get the care and support they need…people who fall through the gaps.
We are:
• Identifying people who are falling through the gaps
• Engaging them and other local people and organisations - working in partnership
• Focussing on the good stuff - making the most of Warrington’s assets, especially its people
• Enabling people falling through the gap to live a good life, connected to and contributing to their community
• Seeing if the learning can be used elsewhere
Click for session presentation

Conference Workshops

Banner advert for the 2020 LDE Conference

Our Workshops

1st Session Workshops 
Making a profound difference together

How people often labelled as having profound and multiple learning disabilities can shape their own support, and be actively involved in their local communities
Frankie Dunn and Samir El-Ziftawy,
Campaign 4 Change working with Achieving Together

Frankie Dunn and Samir El-Ziftawy, from Brighton work for Campaign 4 Change, a self-advocacy group. Both are passionate about promoting the rights and inclusion of people with profound and multiple learning disabilities. They will be supported by their families and other Campaign 4 Change colleagues
Relationships for all - Rights, Choices and support

Everyone has the right to a relationship and a sexual life but we know that this can be difficult for some people.
Supported Loving is a national network of organisations who want to help everyone to have this right. In our workshop we will look at the progress that has been made so far, what still gets in the way and how we can all work together to make it better for everyone.

Supported Loving Network members

Stephen Haywood, Charlotte Johnson Sue Sharples, and Claire Bates

Charlotte Johnson

My name is Charlotte Louise Johnson. I’m 29 soon to be 30 in early 2020. I Identify as trans and I’m currently on the Leeds GIC waiting list. I am confident with my identity but can struggle with my confidence socially which can lead to anxiety my supporters understand me really well and support and encourage me to be me. I’m an active member of Supported Loving and in 2018 set up 2buWakefield and attend network, group meetings and other events locally and nationally.

Stephen Haywood

Stephen is a member of the Lancashire Partnership Board and co-chair of the Friends and Relationships sub group. He is a proud campaigner for the rights of people with a learning disability to have safe, intimate relationships. He believes that everyone who has a learning disability and support staff should have access to sex and relationships training. His longstanding efforts were acknowledged by his inclusion in the 2019 Learning Disability Leaders List.

Sue Sharples

Sue has a background in Social Work and provider management. Since retiring she has been dedicated to enhancing opportunities for people with a learning disability to develop relationships, including setting up a dating and friendship agency with Stephen Haywood and providing training for staff, family members and self-advocates. In 2019 she received a Winston Churchill Memorial Trust Fellowship, enabling her to travel to North America to explore approaches to preventing sexual harm against adults with a learning disability.

Claire Bates

Claire Bates has worked with people with learning disabilities at Choice Support since 2002. She is the founder of Supported Loving, a human
rights-based campaign with an associated national network.
Your future support, Your future workforce.
This workshop will explore
• What are the jobs that people do that affect people’s lives?
• What do you want to happen to make things better?
• Information about the “Learning Disability and autism Mandatory Training” How should people be involved in this work?
• What training are you involved in within your local area?
Marie Lovell from Skills for Care
Mindfulness: bringing benefits to us all.

Mindfulness for Life is a programme designed to bring mindfulness to people with learning disability and or autism.

This programme has been developed by Skills for People in partnership with people who have living experience of learning disability and/or autism and experts in mindfulness.
Suzie and Kathy will share how they developed the programme and what they have learnt.



Suzie Fothergill and Kathy Steele
Skills for People

Suzie has worked with Skills for People for many years. She is a lead member of the Skills for People Quality Checkers team and helped to create the Mindfulness for Life course and groups. She got the Learning Disability and Autism Leaders awards Lifetime achievement award in 2019.

Kathy works for Skills for People. She was involved in developing Quality Checkers. She currently leading our Mindfulness for Life project, helping people with Learning Disabilities learn how to use Mindfulness to improve their wellbeing.
Learning together – work to learn and change from Mendip House

In May 2016, people were bullied and abused at Mendip House which was run by the NAS. The home was closed in November 2016, and this presentation describes what we learnt about what went wrong, and what we have done to stop this happening again. We hope that sharing what we’ve learnt will help other organisations to stop it happening elsewhere.

Carol Povey

Carol is the Director of the Centre for Autism at the National Autistic Society
With a little help from my friends

This session has been co-created by KeyRing and L’Arche. We will explore the importance of friendship, building inclusive communities, creating a sense of belonging and community organising (how to make a wider change in our communities).
The workshop will include some short videos, mindfulness practice and a practical exercise exploring how hard it is to listen. We’ll also give examples of what we have done and what it’s taught us.







Frank Steeples has worked for KeyRing for many years, he is always keen to help people find ways to improve their own lives.

Anthony Fletcher was a KeyRing Member but now volunteers for KeyRing as a hub organiser and is heavily involved in his community.

Chris Speed is a KeyRing Member who is passionate about improving his community and loves to share his experiences.
Loren Treisman is CEO/National Leader of L’Arche. She’s worked in many charities both in the UK and overseas and is mother of twin boys. She’s passionate about inclusion, well-being and social justice.
Richard Keagan-Bull is a long-term member of L’Arche London, a public speaker and advocate for people with learning disabilities.
Lunchtime workshops

NIHR’s themed review: health & care services for people with learning disability – Louise Wallace Come and hear what recent research is saying about health and care services for people with learning disabilities and tell us what you think
My campaigning life

Simon Cramp has been an advocate and activist for more than 30 years. He will talk about his work as captured in his book ‘Don’t Cramp my style’
Simon Cramp – self advocate campaigner
2nd Session Workshops

We are running the organisation: leadership by people with a lived experience of a learning disability

Forty percent of paid director posts in the Thera group of companies are held by people with a lived experience of a learning disability. Thera puts at the heart of its leadership people with a learning disability and enables those it supports to control the Thera companies. Come along to this workshop to explore what this inspirational leadership structure looks like in practice – the highs, the lows and even the legal bits.
Matthew Smith and Jenny Garrigan are joint Directors of Quality and Involvement in Thera Trust, a charitable group of companies that support people with a learning disability. They work within an equal executive team of four, ensuring Thera Group is led by a person with a lived experience of learning disability.
Matthew brings both his lived experience and his professional advocacy background to his role in Thera. He is passionate about ensuring people have their voice heard. One of the ways he achieves this is to chair the Membership committee.
Jenny has professional experience in both health and social care and throughout her career, has worked to ensure that people with a learning disability can move-on from institutional environments and have more opportunities, designing and having control of the support they receive.
Edwina Turner is a senior lawyer in Anthony Collins Solicitors’ Charities & Social Business Team. She has extensive experience of working with national and international charities advising on restructures, mergers and internal governance.
Employment making it work for everyone

Inclusion North employs people with a learning disability and autism and family carers – we try and make recruitment as easy and accessible as possible and have learnt a lot about increasing diversity in the workplace.
SeeAbility employs Eye Care Champions who have learning disabilities and autism. Eye Care Champions Rebecca and Joanne talk about what it was like looking for work and their experience of having a job.
The session also covers how SeeAbility is supporting Rebecca and Joanne in their roles.
Sandy Marshall and Denise Bowles
Rebecca Lunness and Joanne Kennedy, Eye Care Champions, SeeAbility.
Laura Christie, Head of Eye Care and Vision, SeeAbility.


Sandy is a disabled person so understands some of the barriers, Sandy has used Access to Work and Direct Payments in the past.
Rebecca and Joanne have learning disabilities and work as Eye Care Champions in the North West. Laura Christie leads on SeeAbility’s national work around eye care and vision. Inclusion North and SeeAbility
Pass it on – Good mental health for all

The Pass-it-on Project is a training project about mental health for people with learning disabilities.
People with learning disabilities take the lead in training others all about mental health and giving them the skills and confidence to pass on what they have learnt through peer support groups. Come along and get a flavour of what we teach

Pat Charlesworth and David Mahon from Foundation for people with learning Disabilities

Pat Charlesworth is an expert by experience and a valued member of the team at the Foundation for People with Learning Disabilities. Pat is the Chair of the Foundation’s Reference Group and the Chair of its Pass-it-on Steering group. Pat is an advocate, campaigner, researcher and trainer, and contributes to many projects and programmes and to both policy and guidance work. Pat works on the Palliative Care advisory group and developing guidance with NICE on growing older with a learning disability.

David Mahon is the Project Manager for the Pass-it-on Project at the Foundation for People with Learning Disabilities. David has a background in developing projects and programmes across a range of different areas including the development and delivery of speech language and communication needs training across the youth justice and education sectors and peer support and co-production for people with multiple and complex needs.
Help make Learning Disability England a stronger voice together

There will be elections for 6 places on Learning Disability England’s Representative Body in 2020
Come and find out how the Representative Body works and the role of being a rep
Representative Body members – Wendy, David & Vicky being asked by Lisa & Gary

Gary Bourlet and Lisa Watchorn from the Learning Disability England team


How can organisations change the way they work to include more people?

Damian Hebron and Sophie Kendall will talk about how small changes in the way organisations work and communicate can be introduced and can help more people become involved in making decisions. And they will try to get people to help them with more ideas about changes they can make.
Damian Hebron and Sophie Kendall from the Nesta People Powered health team

‘Your voice, your contribution, your leadership’

“Our session is about the leadership of “self-advocates” and how people shouldn’t be “passive recipients” of their lives. People with lived experiences will be sharing tools and examples of how people can put into motion their talents, contribution and/or skills to make the change that needs to happen.






Daniel Watkins, Dimensions Council member has goals of following in the same footsteps of Dr Mark Brookes MBE.

Ciaran Bradley used his love for films, and desire to help people to launch a film club at a local community centre and a 2019 Leader on the Learning Disabilities and Autism Leaders List.

They will be sharing their journey’s and providing top tips on how to believe in yourself, follow your passion and provide leadership.

Adele Carter from Dimensions and Angela Catley from Community Catalysts will join them in the workshop



Conference Speakers & Agenda

Banner advert for the 2020 LDE Conference Thursday 13 February 2020 | Manchester

10.00am
Registration
10.15am
Pop ups Sessions – mini workshops open to anyone arriving before the conference

The history of people with learning disabilities and my journey - Andrew Bright, Head of Development Thera Trust

How the case management and planning system works for providers - iplanit by Aspirico

“Including everyone: What’s next for person centred service design and care management
In the iplanit presentation we outline how innovation can ensure that the voice of people we support is heard and understood. We will discuss how software can underpin a change in behaviour in service design and delivery that builds on rights, demonstrates provider value, supports co-production and real collaborative working. Terry Langton will discuss a range of leading UK provider examples where providers are meeting the above goals. Terry has over 20 years experience as a disability/social care consultant and will use a mix of video examples and demonstration material to illustrate these important messages in an engaging presentation”.

More than my label – Claire – May Minett
11.00am
Opening Session – Welcome from the Conference Co-Chairs


Scott Watkin - LDE Representative Body Member
Scott is one of the Co-Chairs of Learning Disability England’s representative body. He is am organisational rep


Jordan Smith - LDE Representative Body Member
Jordan is one of the Co-Chairs of Learning Disability England’s representative body. He is a self-advocate rep

11.15am

Essex County Council
and Nesta
Making Co Production real for us all

How local people, Council staff and other organisations worked together with help from Nesta to create community support and new ways of working

11.40am

Dame Julia Unwin CBE
Inclusion and Civil Society
How we can build on the learning from the Independent Inquiry into the Future of Civil Society to create community and voluntary organisations and action that include everyone.

Julia was the Chief Executive of the Joseph Rowntree Foundation from 2007 until the end of 2016. She has been a Charity Commissioner, Chair of the Refugee Council and Deputy Chair of the Food Standards Agency. She has written extensively on issues relating to philanthropy, governance, the voluntary sector and its relationship with government. Her most recent publication, “Why Fight Poverty?” was published in November 2013. She chaired the Independent Inquiry into the Future of Civil Society, had a Fellowship with Carnegie UK Trust, and is a trustee of the Dartington Hall Trust. In 2018 she was appointed to the Council of Economic Advisers by the First Minister of Scotland. In 2010 Julia was awarded the Outstanding Leadership Award in the Charity Awards and has received honorary doctorates from three universities.
12.10pm
Tea & Coffee Break

12.30pm


Workshops - Find out more here

Making a profound difference together – Campaign for Change
Being active in your community – members of KeyRing networks and L ’Arche communities
Rights, choices & role of support - Supported Loving network members
Mindfulness: bringing benefits to us all – The Skills for People team
Training to understand? How can the new mandatory training work best? – Skills for Care

1.30pm
Lunch

We are sharing members’ campaign films in a workshop room over lunch time

Or do join the extra research workshop
14.00-14.30pm
NIHR’s themed review: health & care services for people with learning disability – Louise Wallace


Hear what recent research is saying about health and care services for people with learning disabilities and tell us what you think

My campaigning life

Simon Cramp has been an advocate and activist for more than 30 years. He will talk about his work as captured in his book ‘Don’t Cramp my style’
14.30-15:15pm
Working together to achieve change - bulding shared understanding and action
Kevin Caufield and Faisal Yusuf of the Hammersmith and Fulham Disabled People Coalition
Isabelle Garnett who leads the Homes not Hospitals campaign
Anne Webster NHS England
Disabled people, family and self-advocate activists or campaign groups share how they have built shared understanding

15.15pmWorkshops
We are running the organisation: leadership by people with a lived experience of a learning disability – Thera Trust and Anthony Collins Solicitors
Pass it on – Good mental health for all – Foundation for people with learning Disabilities
Employment making it work for everyone – Inclusion North and SeeAbility
Help make Learning Disability England stronger – Representative Body members
Leaders in making inclusion real – Community Catalysts and Dimensions Council

16.15pm
Tea & Coffee break
16.25pm
Building a shared understanding – actions for change. No more reports or review
Learning Disability England team
16.45pm
A self-advocacy Social movement – are you in?
17.00pmEnd of conference
Thank yous and goodbye

LDE Annual Conference 2020 – Presentations and Blogs

Banner advert for the 2020 LDE Conference Thursday 13 February 2020 | Manchester
Including Everyone – What next?

How do we build on what is working now?

Our 2020 conference on 13th February 2020 focused on the progress we have, as a community made to inclusion.

Our members and partners shared examples of how people and organisations are working in inclusive ways so people with learning disabilities are

  • Making decisions that affect their and their peers’ lives in organisations, policy development or wider community
  • Living in the community with the same choices as others
  • Active members of their community in paid and unpaid roles
  • Getting the same opportunities to live a good life as everyone else

                   

 

View the Conference Photo Album HERE!

 

About the conference

We were back in Manchester, at the Friends’ Meeting House. We returned to this venue as the feedback from the 2019 conference was so positive and we felt confident it is accessible and would provide the services and rooms we need to make it work for everyone.

We are very grateful for our conference sponsors. You can find out more about them here.

The conference newspaper can be accessed HERE

Below are the presentations where permission has been given, and other information from the day.

 

Our Speakers 

 

The day was co chaired by Scott Watkin BEM and Jordan Smith, Learning Disability England Representative Body organisation and self advocate reps.

Essex County Council and Nesta: Making Co Production real for us all

How local people, Council staff and other organisations worked together with help from Nesta to create community support and new ways of working

Julia Unwin CBE: Inclusion and Civil Society

How we can build on the learning from the Independent Inquiry into the Future of Civil Society to create community and voluntary organisations and action that include everyone.

Kevin Caufield and Faisal Yusuf of the Hammersmith and Fulham Disabled People Coalition: Working together to achieve change – building shared understanding and action with Isabelle Garnett who leads the Homes not Hospitals campaign and Anne Webster NHS England.  Read the report and find out more:

Disabled Peoples Commission Report

Accessible Summary of Disabled Peoples Commission Report

More about the Commission

Building a shared understanding – actions for change. No more reports or review: Learning Disability England team  – Find out about our Good Lives 2020 work HERE

A self-advocacy Social Movement – are you in?

 

Workshops – morning

 

Making a profound difference together:  Campaign for Change

Being active in your community: Members of KeyRing networks and L ’Arche communities

Rights, choices & role of support: Supported Loving network members

 Mindfulness for Life: Skills for People

Training to understand? How can the new mandatory training work best?: Skills for Care – You can also view the session notes and feedback HERE

 

Workshops – Afternoon

 

 

We are running the organisation – leadership by people with a lived experience of a learning disability: Thera Trust and Anthony Collins Solicitors

Pass it on – Good mental health for all: Foundation for People with learning Disabilities

Learning together – work to learn and change from Mendip House: Carol Povey, National Autistic Society (presentation not available)

Employment making it work for everyone: Inclusion North and SeeAbility

Help make Learning Disability England stronger: LDE Team and Representative Body members

Leaders in making inclusion real: Community Catalysts and Dimensions Council

 

Pop Up and Lunchtime Sessions

 

The history of people with learning disabilities and my journey: Andrew Bright, Head of Development Thera Trust

How the case management and planning system works for providers: iplanit by Aspirico  

More than my label:  Claire – May Minett

NIHR’s themed review – health & care services for people with learning disability: Louise Wallace

My campaigning life:  Simon Cramp (presentation not available)

The full conference agenda is available HERE

 

Read some blogs about the day!

 

Blog from Jyrki from Inclusion Europe HERE

Blog from Julia Unwin HERE

Blog from Aspirico HERE