As an ex-head of a large joint health and social care learning disability partnership, with a budget of more than £50 million and a workforce of over 1,000, I used to take my life in my hands when I stood up and said: ‘There is nothing special about learning disability’.
Who would get to me first? My own staff? The families who I knew had been let down time after time by the system that I represented? The consultant psychiatrist?
Let’s be really clear.
Families of people with learning disabilities have my utmost respect. The most hardworking committed, loving and strong people I have met have been parents and siblings of people with learning disabilities who have had to fight their way through insufficient support systems in health and social care
People with learning disabilities have been dreadfully let down by an inadequate health system that has ignored their basic rights to access health care, a social care system that has participated in their marginalisation and a society that has at best turned a blind eye. How many times are we going to hear a call for the closure of NHS campuses – while in reality nothing happens? Enough is enough.
People who work with people with learning disabilities, in my opinion, are often the most hard working, committed, ego free and principled people – in it for the long term, a true vocation.
But, despite these truths, I cannot ignore the fact that the ‘learning disability system’ – those specialist health and social care systems created to support people – teeter dangerously on the edge of contributing to the marginalisation of people and their families; not least, because of their specialism. The agenda they sometimes pursue is to promote the idea that it is only they who can protect the interests of the people they are working with – and in doing so they suck them into the margins if they are not careful.
People (you, me, older people, people with learning disabilities, all people) need somewhere decent to live, preferably with other people they have chosen to live with. They need something to do during the day that makes them want to get out of bed in the morning and the ability to feel safe when they go out of their front door. They need a network of relatives and friends who want to be with them because of who they are – not because they are getting paid – and access to healthcare when they need it to support their wellbeing.
The reality is that many people with learning disabilities don’t get many or all of these things, and I’m not sure the people paid to support them are organised in a way to make it happen.
Take integrated teams, for example. In my view it seems that specialist health and social care teams are not built to create access to health and social care opportunities. The integration is with the wrong bits of the system. For instance, the health element doesn’t include the most important part of the health system – primary care, GP support, and access to secondary care when you need it. The health element is often a marginalised, specialised element of the health system that somehow excuses the rest of the health system from taking the needs of people with learning disabilities seriously.
Social care support systems are often geared to somehow soften the impact of people with learning disabilities on the rest of society. Day centres, day opportunities, respite facilities all hide people away so that we don’t have to face the awkward truth that we are uncomfortable in the presence of people who are different.
There is some hope though – but we do have to change our mindset regarding how to support people with learning disabilities to lead the very best life they can. Here are two examples – and my learning from one conversation with a committed mum.
Changing the conversation
- A day centre on the outskirts of a one-horse town in a large shire authority moved out of its three-storey home (yes three storeys, no lift) and moved into the centre of the town, sharing a premises with the table tennis club. Glamorous it wasn’t. The workers took a week off from their normal work and intensively researched what was going on in the town – they found 130 pockets of activity and they plotted them on a large map on the wall. They then had new conversations with the people they had been working with for many years and who thought they knew, not based on a menu of activity and services – walking, computers, art etc – but based on what people were really interested in – connected to the map on the wall. They discovered that they didn’t actually know people all that well. The job of the workers stopped being about ‘doing stuff’ with people to keep them occupied and became ‘warm introducers’ or ‘connectors’ to some of those 130 things that were going on. Sometimes the connection worked, sometimes it didn’t and people tried something else. One guy chose to buy his sister a present for his new niece – who by now was 4 years old. Another guy chose to buy his lunch – for the first time. He was 25. Another guy they thought they knew really well – and knew he loved computers because that was what he always chose to do in the day centre. Turns out he didn’t like computers much at all – it was just the only access he had to his love of art. He now joined a local art group and after a few times didn’t need anyone to be with him other than the people who lived locally and liked art. The workers had to swallow some humility – reading back their own ‘assessments’ and reviews of people. They had to own them because they recognised their own writing. But they were ashamed at how little they knew the people they had been working with for years – until they changed the conversation.
- Another joint learning disability team has consciously stepped out of the shadows and made a determined effort to be effective ‘inclusion’ activists – becoming part of an overall system of community based support rather than a specialised element of it. They have stopped doing an ‘intake assessments’ – to protect their specialism – otherwise known as the mechanism that tries to prove someone’s IQ is more than 70 – in order to keep the maximum number of people out. They have stopped arguing with their mental health colleagues about whether someone’s mental health or learning disability is their key feature. Just not doing these two things has saved them a lot of time. Their learning includes the following:
- Think differently. The conversation is about the person, not about our processes or the services we provide.
- Remember we don’t know best. We have expertise in learning disability. We’re not experts on individual people, their experiences, their family.
- Remember that everything we think we know about the person could be wrong. Or, they could have changed. Or, we could be preventing change because we think we know them and have created a structure around them that doesn’t allow progress.
- Think about whether we really know that person’s life beyond the services. There could be a wealth of information about things they access that we can add to our knowledge of the community.
- Remember that people’s lives tend to be better when they are in control. Look for strengths. Listen for what that person is telling us is important, and think about how to support that, rather than assuming we understand what the problem is.
- Move from a mindset of keeping people out to welcoming them in. Listen to what the person is telling you without trying to fit them into an MH or LD or OP box.
- Try to find a solution at the first possible point of contact. Passing people on has an impact on how they feel about the service they receive, and every pass is more work and more opportunity for information to be mangled.
- Talk about strengths and resources, and where you learn something new about a coping strategy or a community service, make a note of it – it might be useful for somebody else.
- If possible, provide a chance for people to interact with you face to face. Coming along to a drop-in can be a more effective way of getting an understanding of somebody’s needs than a telephone conversation, and can allow for tasks to be supported (forms filled in, information shared) on the spot and without the need for anyone else to be involved.
- And the Mum? I bumped into a senior social worker in a session where we were talking these things through. She talked, she said, for the first time at work, about the fact that she had a son with autism, and how she had determinedly kept him out of the care system that she worked in all his life. I asked her what would have helped her, given she didn’t believe that what was on offer would help her. She talked about 2 or 3 times in his life when he had faced a really big challenge that she wasn’t the best placed person to help him with and she found someone she really trusted and gave them some money to act as his mentor and coach in helping him navigate that particular life challenge.
Perhaps there is a lesson in this for all of us.