Sound Therapy

We all agree and know that we really do want the very best in terms of quality of life for people with learning disabilities and especially those with complex needs. Decoda grew out of my experiences in a local home and day centre and the firm belief that there had to be an alternative to someone sitting all day with an Argos catalogue, as happened with one young man there.

The big question is what that better life will look like or how it will come about. One over-riding point that emerged from the consultation event I attended yesterday is that any solutions have to be firmly focussed on the individual. The term learning disabilities covers such a huge spectrum of conditions that what may be the perfect solution for someone with mild learning disabilities, desperate for a proper job or progressive education isn’t appropriate for someone with very high individual needs.

If we truly focus on the individual then we don’t have to be so concerned about structures. In other words the day centre where the young man flipped through the Argos catalogue failed to take any account of his interests or ways to engage him. The answer isn’t necessarily to close down the day centre, simply to take the time to find ways to communicate with him and to find things he’d enjoy doing. We have the tool already in person-centred planning. Also, as was suggested yesterday, we need more flexibility in the way day centres are used, or rather under-used as they’re a resource that other groups could hire.

In the same way, the size of home doesn’t automatically mean a good, or bad, experience. There are small homes I know where the residents rarely get out. Equally there are large residential homes where the residents are firmly part of the local community and are recognised, and treated, as individuals. Alas, these places are no longer fashionable so with one in Hastings we’re facing the irony of elderly people being moved out of the only home they’ve ever known in the name of giving them a better life.

What we find time and again is that it isn’t the structure that’s important - it’s the staff. Apparently that’s true in all fields. Research shows that good staff can make a poor system work well, but the best system will fail miserably if staffed by the wrong people. We see that with individual staff members and the difference they make to the experience of the person they bring to the Music Gym. We see that in the homes and centres where we work, the staff are the crucial element.

Finally, a mother in my group raised a point about the barriers to taking someone with profound disabilities out into the community. How can you do that, she asked, if the facilities don’t exist to change them easily? This reflects a much broader concern - everyone wants people with special needs to be absorbed into the community but the way that happens shouldn’t leave them vulnerable, exposed and, in the worst cases, bullied.

Sometimes yesterday, listening to the results of what people with learning disabilities, their staff and families wanted I wondered where I’d heard this before. I realised it was in the Needs Analysis carried out in 2003. So, the needs and aspirations don’t change and why would they? People with learning disabilities want the same things we all want - meaningful work, education opportunities, good friends etc. The question is - do we need huge sweeping solutions or the gradual change that will come about if we think more flexibly and above all we focus on the individual.

It’s so easy with a blog to slip into being negative and cynical - especially around something that involves dreaded consultants. What I found inspiring at the event were the examples people gave of where something’s being done well. Someone mentioned that public transport is much more accessible than it was a few years ago. A manager of several homes spoke of pooling their resources - one home has an art room, another has access to a beach hut - the residents of all the homes now enjoy these.

If anyone would like to send other examples of where people are getting it right I’d be happy to publish them here.