On Tuesday 24 September, VODG in partnership with Reside with Progress and co-sponsored by Autism Together, Brandon Trust, Certitude, Choice Support, Dimensions, Hft, Look Ahead, MacIntyre, Options, PSS, Turning Point, United Response and VoiceAbility held a fringe meeting in the PLMR Hub at Labour Party Conference.
The event saw speakers The Rt Hon Sir Stephen Timms MP, Minister for Social Secuirty and Disability; Jen Craft MP; Les Warren, Managing Director of Reside with Progress; and Dr Rhidian Hughes, Chief Executive of VODG, voice their opposition to the detention of autistic people and people with a learning disability in Assessment and Treatment Units, outline some of the changes needed to end this scandal; and the impact and difference third sector community-support can make to people's lives.
The meeting began, and ended, with people's lived experience, through videos from VoiceAbility, featuring Bethany and her father Jeremy, in videos from their 'Use Your Power' campaign.
We also heard from Dom and about Aaron's journey from hospital, in a video from More Than a Provider.
Dr Rhidian Hughes, opened the event by referring to the 2000 autistic people and people with a learning disability detained in locked settings, against their will. Often because of archaic legislation and a lack of community provision. Rhidian challenged the CQC to play their part in ensuring regulation did not reward hospitals who do not move people on quickly enough, and called on the government to revise the way resources are invested.
Les Warren extolled the benefits of supported living and the opportunities available in the community to support people in a way that prevents escalation of need, prevents detention in Assessment and Treatment Units and provides support for those able to move from hospital back into the community.
Jen Craft MP spoke passionately and personally about the importance of getting the right support in the right place for autistic people and people with a learning disability and agreed this is a national scandal saying 'the way disabled people are being treated is Victorian’. Jen spoke about the ongoing traumatic impact on the ability of individuals and families to interact with services they need. and called on the Government to act - Ministers have known about it for a while but it continues. 'The sccandal needs to end'.
Sir Stephen Timms joined the meeting and said this was a new issue for him, but was ‘here to listen and learn’ and take away actions. He reiterated the Government’s commitment to put the views of disabled people at the heart of decision making. He referred to the forthcoming Mental Health Bill, which will limit the scope to detain autistic people and people with a learning disability and only when strictly necessary and there’s therapeutic benefit of hospital.
The Minister read a statement from the Department of Health and Social Care that said through their proposed reforms to the Mental Health Act the Department want to ensure people get support in the community, so reducing the unacceptable number of people being detained. The DHSC accepted more needed to be done and committed to ‘fix’ the issue.
Sir Stephen committed to meet with Jen Craft MP to discuss the issues being raised to make progress and to then bring in other Ministers
As part of other contributions and discussion, the importance of supported living was strongly made. This is not an issue of more money but reprioritising spend in the community. Jen Craft MP emphasised the value of carers and their return to the Treasury. The Minister referred to the expected fair pay agreement and investment in the workforce so they can develop the skills needed and feel valued.
In closing, Rhidian called on the government to be clear in its commitment to ending this scandal and report annually on progress.
Lucy Johnston, Health and Social Affairs Editor at the Sunday Express chaired the event and has written about the discussion, joining our calls to government to end this scandal by making the legislative and policy changes needed and moving investment away from hospitals, and into third sector community-support.
You can find out more about our asks in our Building the Right Support Position Paper.
Resources from members invovled with the fringe can be found on our Building the Rights Support Hub.