Definitions

Hi readers, Kerry and Emily here this week, talking about an online meeting I, Kerry, attended last week.

People with lived experience from 14 organisations across the UK met online. We’re all funded through the same programme and provide independent advocacy for people with a learning disability and autism.

The meeting focused on ongoing support/funding. Emily and I met online later that day. What’s stayed with us is how confusing it is when people with a learning disability and people with autism are increasingly often clumped together in the same group.

While some people have both, many don’t. Having one doesn’t mean you have the other. Importantly, support needs for someone with autism and someone with a learning disability aren’t the same. Even within our learning disability sector, support needs look very different.

For example, some people with a learning disability live independently, have jobs, drive; while others may be non-verbal, have complex health needs and a profound learning disability. Both have equally important needs, but support doesn’t look the same.

Our concern is, when services group sectors together, people get missed. It’s especially true for people less able to speak up for themselves, or don’t have support to do that.

This helps explain why systems like benefits often fail. If support doesn’t start with the person, it’s unlikely to work. We’re expected to fit into systems, rather than systems fit around us. Staff working in ‘systems’ (often badly paid) are also expected to understand and support a too broad a range of needs, stretching these staff unrealistically. So they leave, people like us aren’t supported, we deteriorate and need crisis support, and all the costs rise!

We will keep raising these issues locally and nationally. More on this next week. We aren’t done on this yet!

The writers of the Our View column are supported in their editing by People First Dorset - a charity led and run by people with learning disabilities with support from staff