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Self-advocacy can help give a voice to people in care

This week’s Learning Disability Week celebrations are clouded by the recently televised scenes of abuse in Whorlton Hall. It’s hard to celebrate when we don’t know who else is living in fear.

If most people with learning disabilities and/or autism face exclusion and poor physical and mental health, those in prison and secure hospitals are among the most unseen, unheard and unhealthy. That explains the passion of our Kent social enterprise bemix for people to be seen, be heard and belong, and why we’re part of Nesta’s social movements for health.

To understand why people were abused, think about the power of the care provider. Present day and night, Whorlton Hall staff had total ‘parental’ power over vulnerable people’s lives, especially when no relatives visited. Whether handled with compassion or cruelty, no organisation should have such control over a person.

Most people with learning disabilities have had decisions about their lives made by others. Families and professionals mostly make caring choices for people, and some people lack capacity to decide for themselves. But a person’s life is still their own. An advocate - someone who finds out what you want and speaks for you - helps people take control. But wherever possible, people should be self-advocates - speaking up for themselves.

Some advocacy is required by law when big decisions are made. But Whorlton Hall shows much more is needed:

  • Imagine independent advocates funded and authorised to visit secure hospitals and care homes regularly, even weekly. We would send advocates in pairs: one with past experience of living in such places; the other skilled in the complexity of the health and social care system.
  • Picture them training people to know their rights, ask the right questions, identify signs of abuse and neglect, and how and who to ask for help.
  • See them looking for signs that people are at risk, asking about plans for people to move on, raising safeguarding concerns, even starting tribunal proceedings when care decisions are against people’s wishes and interests.
  • Hear them in conversation about life after hospital: socialising, staying up late, paid work, involvement in the community.

Strong advocacy with self-advocacy training could have given people in Whorlton Hall the power to resist abuse and seek help. Even where care is good, it would support people to be healthy, safe and move on.

Right now, it doesn’t happen. In fact, self-advocacy has taken a battering under the austerity policies of recent governments. Yet look at the abuse and neglect people are still exposed to. Self-advocacy needs to rise up again. High time for a new social movement.

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This blog was co-written by Steve Chapman and Matt Clifton from bemix in Kent and Medway. Steve is a self-advocate company Director and Matt is Chief Executive.

Author

Steve Chapman

Self-advocate company Director at bemix in Kent and Medway

Matt Clifton

Matt Clifton is Chief Executive of bemix in Kent and Medway.