December- that time of year when we inevitably reflect on our achievements and make plans for the year to come.
Indeed, social care services for adults with learning disabilities and autistic people have had a pretty tumultuous year. The pandemic has shown the widening disparities in access to health care services for people with a learning disability and autistic people. The resulting staffing crisis in the social care sector has contributed to people not getting the right support across the board.
So, how can we use the past experiences of people with lived experience of disability to shape the future of social care services? Christmas Past:
From the Ely Hospital case in 1967, to Winterbourne View in 2011 and Oliver McGowan’s death in 2016, the history of learning disability support has been peppered with high profile cases of abuse and neglect. People with a learning disability and autistic people have been subject to prejudice and discrimination for decades, driven by lack of knowledge and awareness by the general public, healthcare and other professionals.
I have recently attended two events around learning disability and autism which really resonated. The Open University “Three Anniversaries in the History of Learning Disability” and the latest stakeholder forum of the Oliver McGowan Mandatory Training in Learning Disability and Autism were inspirational. Both events reflected on the extent to which progression of service development for adults with learning disabilities and autistic people has historically lagged significantly behind demand. The result is that people who use services have been consistently misunderstood, their needs sidelined by successive governments and primary care providers.
The overriding message of both events was that to widen mainstream understanding of the needs and wishes of people with a learning disability and autistic people, we need to listen to the voices of those with lived experience. Services offered should then be person-centred and responsive, demonstrating a holistic approach which promotes equality of access.
Christmas Present:
Individuals with lived experience and social care professionals alike, are in agreement that change has begun in the past 10 years and continues. Practice develops as a result of training and mentoring for staff working in the social care sector. However, awareness of learning disability and autism for those in other professions who interact professionally with people with disabilities seems to be lacking. This is where the Oliver McGowan training comes into its own. The training package adopts a tiered approach, being offered to all sectors which offer any service to people with a learning disability and autism. This includes hospital staff, the education sector and leisure and hospitality. The central message of the training “Ask, Listen, Do” enables individuals with a disability and their families to share opinions, be involved and respected and be active agents in effective partnership working. Having this as a thread running through interactions with all professional services should mean that voices will be heard and people with lived experience become active agents of meaningful change.
The Interim Evaluation of the Oliver McGowan training trials, overseen by the NDTi has been overwhelmingly positive; the training has been very well received. Feedback has pointed specifically to the involvement of Experts by Experience as being especially impactful to the delivery of the trial; bringing the training “to life” and relating concepts to actual individuals. This has left a seemingly emotional impact on trial participants, which further embeds learning and will hopefully translate into practice development.
Christmas Future:
Without significant reform and culture shift, the spectre of Christmases past and present will continue to loom heavily over the lived experience of people with a learning disability and autistic people.
We, as professionals, and wider communities, need to adopt Oliver McGowan’s mantra of “Ask, Listen, Do“ to help redefine our attitudes towards people with a learning disability and autistic people. This will afford more opportunities for integration, reshaping current perceptions of community participation for each of us as citizens. People with a learning disability and autistic people are already advocates for wider representation, increasingly achieving participation in social and political life at various levels.
Central to this activism is the call for a new learning disability policy for England. Valuing People Now (2009), itself an update of Valuing People 2001, remains the current policy for learning disability in England. This document has not been reviewed in 10+ years and, although practice has moved on, it remains referenced in the current competency framework for learning disability. However, people with a learning disability and autistic people agree that the policy needs review and that people with lived experience should be involved at all levels. The new policy should give a nod to the history of learning disabilities and autism, what history has taught us and how it can shape future practice. This policy then has the potential to be used as an educational tool to teach young people about learning disability and autism and how these conditions affect people and their experiences.
Looking back at Christmas Past, we can see that inclusive services have developed since Ely and Winterbourne View. But to ensure Oliver McGowan’s legacy impacts future Christmases for adults with a learning disability and autistic people, we need to continuously “Ask, Listen, Do” with reference to the lived experience of these individuals.
For more information on training in learning disability and autism, please check out montgomerysimpsoncaretraining.com or feel free to get in touch, nicola@montgomerysimpsoncaretraining.com for a no-obligation chat.
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