A year in the life of... Learning Disability Wales April 2015 to March 2016
Contents A message from Amy Barrett, our Co-Chair
A message from Jim Crowe, our Director
Our mission and goals
Informing and engaging
Making information easy to read
Events and training
Challenging and representing
Innovating through projects
Our trustees, staff and members
How we spent our money
Keep in touch
â€˜Meet Fredâ€™ - Hijinx Theatre. Photo by Tom Beardshaw
“We learnt the great news that the Welsh Government has given us a grant for three more years for our project Valued Lives” A message from Amy Barrett, our Co-Chair
“Myself and Kevin Sibbons shared the role of Co-Chair.
to Change employment project in June 2016.
We worked really well together. Unfortunately, at the end of the year Kevin had to retire because of ill health. Kevin worked very hard, especially to make sure the voice of family carers was heard. We send him our best wishes and thanks.
There are lots of changes happening in Wales for people with a learning disability. Some of them are very exciting. But we need to make sure there is enough money as well.
I continued as Co-Chair. I was supported by Phil Madden, who was Vice Chair.
The trustees and the staff will carry on working hard together so Learning Disability Wales can do all it can to help people lead the lives they want.”
It will always be very important that Amy Learning Disability Wales involves people with a learning disability in everything it does. This includes having a person with learning disability as Co-Chair whenever we can. The staff have been very good at helping me do my job. We learnt the great news that the Welsh Government has given us a grant for three more years for our project ‘Valued Lives’. It is also very exciting that we started the Engage 3
“I look forward to seeing how our hard work in such an uncertain year will benefit people with a learning disability and their families in the years to come” A message from Jim Crowe, our Director
“As I reflect on the year 2015/16, the word that can best be used to describe it is ‘transition’.
I offer my special thanks for the professional way in which our staff team coped with these uncertainties and for the great support and leadership given by our Management Committee.
This was both in terms of what we do and how we pay for it. The end of core funding from Welsh Government for third sector organisations meant We have all worked extremely hard that we had to think differently. this year. I look forward to seeing how our hard work in such an Thankfully we were successful in uncertain year will benefit people making a strong case for Welsh with a learning disability and their Government funding for our families in the years to come.” project Valued Lives, which will assist in ensuring the successful Jim implementation of the Social Services and Well-being (Wales) Act. Valued Lives started in April 2016 and allows us to develop and improve our information and training activity and engagement with members. The news about our funding was extremely important, but needed to be matched by success with other funders. Thankfully we were also successful with these other bids and you can read more about them later in this report. 4
Our mission and goals
Our mission is to: Create a Wales that values and includes every child, young person and adult with a learning disability
Our goals this year were to: ▪▪ Strengthen the voice, rights and status of children, young people and adults with a learning disability ▪▪ Strengthen parents and family carers’ ability to make a positive contribution ▪▪ Promote person centred services
Sam Jenkins, Learning Disability Wales
“Communication leads to community, that is, to understanding, intimacy and mutual valuing” - Rollo May Informing and engaging
Good, clear and accessible information is crucial to our understanding of issues and events. During the year we monitored, selected, edited, wrote, uploaded, shared and circulated a huge amount of information that affects children, young people, and adults with a learning disability.
However, it is important to remember that some people in our sector, especially many people with a learning disability, can have problems with accessing and understanding the latest digital technologies.
So, while we need to adapt to new technologies - such as improving our website so it can be used properly Our audience and their needs is on smart phones and tablets, and extremely important to us. In an making our digital information increasingly digital world we need accessible for disabled people – it is to ensure our communications can vital that we continue to use more be found in all the main hubs of traditional and accessible ways of information. This means dedicating informing and engaging. This includes time to Facebook, Twitter, our website printed easy read information and and email news bulletins, while consultation events – especially when keeping track of new technology and we are engaging specifically with ideas. people with a learning disability.
Our year in numbers 4 Llais magazines + 30 articles
4 e-Llais Updates
1 In the Spotlight e-bulletin, highlighting our recent work 1,100 Facebook likes - an increase of 400 3,380 Twitter followers - an increase of 500 23,000 users, 82,000 page views + 87 news stories on ldw.org.uk 6
“People with a learning disability have a right to information they can understand so they can make informed choices and have a say” Making information easy to read
Easy Read Wales People with a learning disability have a right to information they can understand so they can make informed choices and have a say. We help make this possible by producing high quality accessible information for a wide range of organisations. To promote our service we created a new twitter account @EasyReadWales, produced a flyer, added our recent work to the Easy Read Wales section of our website, and marketed our handbook ‘Clear and Easy: A handbook for making information easy to read and understand for people with learning disabilities.’ This year our Easy Read service worked with 14 clients, producing 25 documents including policy and consultation documents, information leaflets, posters, surveys, letters and reports. Most of our documents are in both easy read English and easy read Welsh. You can see all our work at www.ldw.org.uk/easy-read-wales.aspx
“Heart and Soul looked at how we can work to improve the well-being of people with a learning disability” Events and training
Heart and Soul annual conference With lots of talk about well-being we wanted to explore what it actually means. Our annual conference took up this challenge and with a mix of accessible and interactive workshops, drama and presentations we looked at all the things that different people think about when we say well-being and how we can work to improve the well-being of people with a learning disability. Heart and Soul was another sold out Learning Disability Wales annual conference, with 283 delegates joining us for two days of lively and engaging discussion.
‘What wellbeing means to me...’ Mirus and Learning Disability Wales stand
Ask your question, the Senedd, Cardiff Bay
Ask your question We teamed up with Dimensions to run Ask Your Question events in Cardiff, Swansea and Newport. These inclusive events gave people with a learning disability and autism the opportunity to ask a panel of experts questions about issues that matter to them. AMs, MPs, and campaigners sat on the panel answering questions from an audience of people with a learning disability.
Where are we now? This conference took stock of developments in the law and practice in Wales concerning the rights of disabled people and their families, with particular focus on social care, health, carers, special education rights and how to remedy failures by public bodies. The conference brought together many leading disability law and policy practitioners and commentators, whose work has shaped the law and practice in this field. 11
Training courses We ran a programme of 52 courses for 520 delegates, and an in-house training service across Wales, developing the skills, knowledge and values of the workforce. We provided training on Person Centred Planning, Making Information Easy to Read and Understand, Effective Communication, Autism Spectrum Conditions and many more.
“Very knowledgeable trainer with an engaging delivery. Learnt a lot.” “Great course, answered many questions for me.”
Person Centred Planning networks We support 2 networks of PCP practitioners and those that use PCP in their lives. People come together from all over Wales to share and develop their practice. 12
“We worked with Welsh Government and other partners and organisations to represent the rights of people with a learning disability” Challenging and representing
Working in partnership for change We worked with Welsh Government and other partners and organisations to represent the rights of people with a learning disability. We took part in several important Welsh Government committees. These included the Disability Equality Forum, the National Partnership Forum of Older People, the ASD Strategic Action Plan refresh group and the Mental Capacity Act/Deprivation of Liberties Leadership Group. Issues that we worked on included: ▪▪ The benefits that can flow from the co-production of services - through a presentation at an EASPD (European Association of Service Providers for people with Disabilities) sponsored conference in the European Parliament. ▪▪ Legal advice to families - as part of the steering committee of the Cerebra/Cardiff Law School Legal Entitlements Project. ▪▪ The benefits of person centred technology - through participating in the Wales Telecare/Telehealth Learning and Information Network and the EASPD interest group on person centred technology. ▪▪ Combatting hate crime – through participating in the Disability Hate Crime Action Group Cymru. ▪▪ Carers rights – through the Wales Carers Alliance. ▪▪ The standards and training of social care workers – through the Care Council Qualification and Standards Committee. ▪▪ Supported living – through the Cymorth Cymru learning provider’s forum. 14
Additional Learning Needs Reform Through the Third Sector Additional Needs Alliance (TSANA) we campaigned and responded to the draft bill and the draft code of practice. As we write, the Bill is due to be re-presented to the National Assembly in December 2016 with the Code of Practice following shortly after. We will continue working independently and as part of the TSANA to provide guidance to officials to promote a person centred planning ethos in the bill so as to best support young people.
Benefits and cuts to services We continued to monitor the impact of welfare reform and cuts to services upon people with a learning disability by: ▪▪ Working in partnership with a post graduate student on small scale research into the impact of welfare reform and cuts on families in North Wales. A Llais article was published. ▪▪ Being part of the DWP advisory group on Personal Independence Payments (PIP) and Welsh third sector group organised by the PIP contractor Capita. ▪▪ Bringing together a group of trustees to help us in our lobbying and information work. ▪▪ Publishing regular information through our communication channels.
â€œOur projects in Wales and Europe demonstrate and share innovative practice and give children, young people and adults with a learning disability new opportunitiesâ€? Innovating through projects
Advising the Minister - Learning Disability Advisory Group This group continues to advise the Minister on learning disability issues. 4 meetings took place. Sub-groups also met to look at support for parents with a learning disability and how to make services better for people with challenging behaviour by avoiding inappropriate out of county placements. We continued to host the LDAG Information Officer. In this role Samantha Williams assisted the Macmillan Learning Disability Project and contributed to discussions around data collection, Continuing Healthcare (CHC) funding, and commissioning services for people with a learning disability in Wales. Information was sent out through the website www.ldag.info, newsletters, other social media and at information stands at a number of events. We have continued to support the work of two Communities of Practice, one looking at Challenging Behaviour and the other at Profound and Multiple Learning Disabilities, through attending meetings and providing updates both online and in LDAG news articles.
Working together with parents with a learning disability Our work aims to combat the significant discrimination and disadvantage that parents with a learning disability face in starting a family and keeping their child. Through our Working Together with Parents project, with the Norah Fry Research Centre in Bristol and the Scottish Consortium for Learning Disabilities , we supported regular network meetings for parents. We urged the Welsh Government to deliver on their stated intention to provide guidance to statutory agencies on supporting parents with a learning disability. We were pleased to hear in summer 2016 that we were successful with our funding bid to the Esmee Fairbairn Trust to extend the project for a further three years.
Easy Read Health Wales Welsh Government continued to fund our work to manage and develop this accessible website that gives people with a learning disability and their families access to a wealth of easy read information about health and well-being. We have promoted the website to family carers, professionals and people with a learning disability through events, leaflets and cards, links in newsletters and on other websites and through using social media. www.easyreadhealthwales.org.uk
Helping young people get involved in global issues TIDE â€“ Towards Inclusive Development Education April 2013 to March 2016. European project This was our final year leading a project to promote inclusive development education in the European Union. We worked with 7 organisations in 5 European countries. The project engaged a total of 250 young adults with a learning disability in workshops that looked at the Millennium Development Goals. These were goals agreed by the United Nations and world leaders to reduce extreme poverty and other challenges like reducing child deaths, combatting diseases and promoting gender equality. Find out more at www.tideproject.eu. Young people from each country went to Salzburg to present the project findings at a European inclusive education conference, run by EASPD. We also produced a practical guide raising awareness of development issues.
Inclusive living and learning across Europe COMBALL, August 2013 â€“ July 2015. European project The partnership project COMBALL examined ideas to help people with a learning disability be part of their community, both living and learning. Our Welsh partners, Innovate Trust and Menter Fachwen, went to a final study visit in Austria where ideas were shared. 20
Funding bids for new projects Friendships and relationships We led the preparation of a funding bid with six European partners to create a training course on personal relationships and sexuality. In August 2016 we were delighted to hear that we were successful in the funding of the Lovelife project.
Gig Buddies We were successful in applying for a license from the charity Stay Up Late to develop new Gig Buddies projects in Wales, where opportunities are created for people with a learning disability to go to gigs and ‘stay up late’. Work to develop the project has already started.
Employment opportunities for young people We worked in partnership with Agoriad Cyf, All Wales People First, Cardiff University, Elite and Project SEARCH to develop a funding bid for employment opportunities for young people with a learning disability and/or autism. We received the great news in February 2016 that we were successful in the Big Lottery grant of £10m for our 5 year Engage to Change project. The project began on 1 June 2016. Find out more on Facebook at www.facebook.com/ engagetochangewales. An expert group was also formed to assist with looking at policy that enhances employment opportunities for young people with a learning disability. The first task was to look at how apprenticeships can be made more accessible to a wider group of young people. 21
Our trustees Community of Interest
Steve Cox Treasurer
Full Member reps Adult Providers Self Advocacy
2 vacant seats
Parents & Carers
1 vacant seat
Independent / Citizen Advocacy
Your Voice Advocacy
Family Support Providers
Cardiff and Vale Parents Federation
Open Seats Interested individuals
Phil Madden - Vice Chair (then Acting Co-Chair) Amy Barrett - Co-Chair Alan Sutherns Dilys Price Maureen Cook
Advisors: Jonathan Day & Sian Owen
Ian Cullimore Finance Officer
Karen Warner Information Services Manager
James Crowe Director
Jenna Trakins Gerraint Griffiths Megan Evans Engage to Change, June 2016 -
Kai Jones Laura Davies Sam Williams Information Information Officer Accessible Information Officer - LDAG* & Accessible Officer Information Officer
Zoe Richards Young Person & Carers Manager
Jennie Brereton Assistant Finance Officer
Lynda Morgan Business Development & Finance Manager
(includes Easy Read Health Wales website)
Disability * Learning Advisory Group (LDAG)
Inacia Rodrigues Training Administrator
Simon Rose Training & Events Manager
Cheryl White Sam Jenkins Harriett Johnson Events & Cleaner Administrator Sponsorship Co-ordinator
Joanne Moore HR & Governance Manager
How we spent our money Money we received this year Welsh Government Core Grant UK Projects
£310,080 (56.9%) £25,031 (4.6%)
Training & Events
Consultancy, networks and hosted services
Membership and publications Donations
Gifts in kind
Money we spent this year
End of year result: - £54,742 The shortfall was met by money we have in reserves. 24
Staff and travel costs
Grants to TIDE partners
Courses and conferences
Looking after our building Project events
£34,785 (5.8%) £13,617 (2.3%)
Running the office
Llais and Llais Update
Keep in touch Learning Disability Wales 41 Lambourne Crescent Cardiff Business Park Llanishen Cardiff CF14 5GG Phone: 029 2068 1160
Fax: 029 2075 2149
Find all our annual reports on our website at www.ldw.org.uk/who-we-are/annual-report.aspx Company limited by guarantee: 02326324 Registered Charity: 1062858 VAT Registered Number: 762 4559 11 25
Creating a Wales that values and includes every child, young person and adult with a learning disability
Hijinx Theatre and Punchdrunk Enrichment, â€˜Beneath the Streetsâ€™ Photo by Simon Gough
Learning Disability Wales annual report April 2015 to March 2016