On 12th March 2019, ExChange Wales held its first conference of the year; ‘Time for Change: Improving Care & Support for People with Learning Disabilities’, at Llancaiach Fawr Manor in Caerphilly County Borough.

Landscape featuring infographic

The day was chaired by Sian Davies, Head of Strategic Programmes at Mencap Cymru. The morning began with the introduction of our first speaker, Dr Sara Ryan, a researcher from the University of Oxford.

Presentation: Current challenges and dilemmas within learning disability research and activism

Dr Sara Ryan

In her presentation, Dr Sara Ryan discussed her journey from academia to activism after the premature death of her son Connor whilst he was in the care of the state. She spoke passionately about the lessons that should be learnt from the mistakes that were made and how fighting for justice takes its toll on families that have lost a loved one.

Workshop Participants

“When your child dies in the care of the state you are forced to endure reliving it repeatedly during the inquest process”

Workshop Image

The findings from the Independent Review into deaths of people with a learning disability 2011-2015 were also outlined in Dr Ryan’s presentation; those with learning disabilities being found on average to die 16-18 years before their peers. After highlighting the fact that in 2010 only 2% of articles published in ‘Disabilities and Studies’ journals featured those with learning disabilities, Dr Ryan concluded her talk by emphasising the need for those with learning disabilities to be included in research by stating ‘making sure research samples are diverse is important. Do not exclude anyone from your samples’.

Presentation: Physical & mental health of families who live with an adult relative with learning disabilities

“In the UK over 35% of adults with a learning disability live with family or friends”

The next speaker of the day was Dr Jillian Grey from CASCADE at Cardiff University. Dr Grey discussed how families who care for adults with learning disabilities often have poorer health than non-care giving peers. It was highlighted in her research that 56.6% of carers suffer with depression or anxiety and how important it is those carer families have enough resources and support for their health in order to adopt a problem solving coping strategies.

Before the first break, our delegates watched a ‘Moving on well’ video provided by Vale People First.

Take a look at the Vale People First videos here

Discussions continued in earnest during the coffee break.

The break was followed by our workshop sessions:

Workshop 1: ‘Caring and coping’ resources

Workshop 2: ‘My right to a love life’

Workshop 3: ‘Learning disabilities and mutual care in relationships’ resources

The lunch break took place after the workshops.

Presentation: Supported employment & vocational training for people with learning disabilities

After lunch, Andrea Meek from Cardiff School of Medicine spoke on supported work and training for people with learning disabilities.

“People with learning disabilities can work and have the right to work!”

Speaker Andrea Meek

Andrea discussed the many barriers to employment for those who have learning disabilities including obtaining support, access to the labour market and travel.  The value of real work settings with real inclusivity and real money was also highlighted.

Andrea then went on to summarise the Engage to Change project which aims to create and support long term youth employment opportunities by engaging young people with and employers. 460 people have been referred into the project over the past 2.5 years with 82% of employers stating they would employ a person with learning disabilities in the future with the right support offered.

“I am not a soldier for our country but I am a soldier for people with learning disabilities”

Presentations: Stories from experience: our journeys

The following hour, we heard ‘stories from experience’ from members of Vale People First and Hijinx Theatre.

We were introduced to Sam and Alex who are getting married this year.  They discussed their lives, finding love and working for Vale People First. Sam has experienced lots of challenges in her life, and once she involved Vale People First, she was able to meet people who cared for her and took her concerns seriously. Sam and Alex shared their top tips for working with those who have learning disabilities, such as ensuring documents are ‘easy read’. 

“Build up trust, be patient, inclusive and accessible and let them speak for themselves”

Next, we met Amy and Amanda, two parents with learning disabilities who set up a parent group to provide peer support.

Amy and Amanda wrote up guidance for professionals who work with parents with learning disabilities. View Amy and Amanda’s presentation and guidance for professionals.  Their key message was

“Don’t pre-judge parents with learning disabilities”

Finally, members of Hijinx Theatre presented. Richard and Tom shared how acting has shaped their lives. The need for integration rather than ‘labels’ was the main message, with Richard concluding,

“Put the person before the label, not the label before the person”

Presentation: People with learning disabilities, inclusion and research

Our final speaker of the day was Professor Ruth Northway from the University of South Wales. Professor Northway discussed people with learning disabilities, inclusion and research, outlining how those with learning disabilities have often been excluded from research.  Barriers for inclusion were identified as prejudice & stereotypes, use of language and the traditional ways of doing research.

“The views and experiences of those who are learning disabled are not reflected in research”

It was concluded that analysing research data with co-researchers with learning disabilities allowed for greater understanding of the findings but making the process accessible and building to an individual’s strengths was crucial.

ExChange Wales would like to thank our chairperson, all presenters and delegates for taking the time to attend and contribute to this conference.

All resources can be found on our website by clicking on the links above and for more information from the day, please view #TimeForChange on Twitter.