‘Supported living – a service or a life?’ Learning Disability England’s first conference 2016

Learning Disability England (LDE)’s first conference since they joined up with H&SA showed the resilience of its members in its determination to continue to speak out on behalf of people with learning disabilities. Rosemary Trustam was invited to report.

The new organisation is offering membership at £12 a year for individuals and £25 for self-advocacy groups in its drive to swell its learning disability voice which is much needed given the planned withdrawal of funding for the National Forums and threatened loss of funding of local self advocacy groups.

Gary Bourlet  leading the English self-advocacy movement and Alicia Wood, who brought the strength of H&SA into LDE, opened the conference identifying the increasing ‘servicisation’ of what should be people’s own secure homes.

Suzy Fothergill, chair of the Association of Quality Checkers (AQC) said, “People’s homes are not always like my home”. People often don’t have things that tell their story, like pets or dirty laundry baskets. People should be getting out and about more rather than tidying up. “Good support is like good cake”, she said. “Only the person who tastes it can tell you if it’s right for them.”

Sammy Butcher, expert by experience and ‘ freedom fighter’, described her journey from home, with her mum nervous about her moving out, via a service where she was expected to fit round staff rotas and routines, with staff not respecting her home. With the help of her sister Hazel and friends and a facilitated community circle, she recruited her support to her own job description and guide. She now shares a privately rented spacious flat with friend Barry. Sammy urged others not to give up and keep speaking out. “Tell your family you love them but you want to fly. If you know your rights you can push through a barrier.”

Sally Warren Paradigm, co-author of REACH standards support for living said, “It’s about having control over how you live; with whom you live; where you live; who supports you and how you’re supported.

Rachel Mason, a mum with two sons with learning disability and autism, told how person-centred planning changed their lives.  Shaun’s school, 20 miles away, meant his world was just school and home. They swapped a respite unit for Direct Payments using a PA to help with more relevant things for school and his developing adulthood. Instead of the social worker’s offer of a three years £1700/week residential placement miles away, he now lives in his own purchased home locally (through www.my safehome.info) with a 24 hour support service designed, costed and recruited by them. With the family’s involvement in their community, Shaun is visible, feels welcomed, has relationships and can join in activities he likes. He contributes to the local community who help keep him safe. The question for care providers was, “How can you ‘be a Rachel’ and help staff to do it’”?

In the panel discussion, Rob Grieg of NDTi, referring to what he called Rochdale’s “wrong and illegal” proposal to end supported living contracts and effectively force people into residential care, drew attention to the policies and laws underpinning people’s rights to remain in their own homes, such as Valuing People and Valuing People Now, the Care Act and Equalities legislation giving disabled people the right to live independently. Residential accommodation removes important rights, including control over where you live. Savings can only be made by reducing quality, cutting staff and providing less personalised services yet people who challenge are best supported with a service designed around their needs.

Public law solicitor Kate Whittaker reminded people of their rights under the law, including the power of the ‘wellbeing principle’ in the Care Act.  She emphasised that local authorities have a duty to promote the individual’s wellbeing, including providing suitable living accommodation.

With decreasing funds over the next five years, Deborah Holland from the Care Quality Commission asked how their inspections can better know what’s really happening and ensure the most vulnerable people’s consent to visits and observation.  (Deb.holland@cqc.org.uk)

David Brindle chairing the panel warned that the proposed changes in supported housing funding and local authority cuts risk  pushing services towards more institutional models. Their challenge was not to allow such a take-over and to help people demand their rights, and to spend money differently.

Finally, Sarah MacGuire Driving up Quality (DUQ) announced the winners of the four categories from the LDE steering group and AQC’s shortlisted organisations, signatories to the (DUQ) code: Innovation –MCCH ; Openness and transparency – Future Directions;  Making a difference to people – Affinity Trust; Making a difference to the culture of the organisation – Thera East  (DUQ). It reminded us that LDE is also about improving quality.

For the shortlisted organisations under the four categories and the day’ presentations – see



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