Welcome to my new blog. I’m going to be writing on a range of issues, some positive, some discussions on what could improve in the sector, some thoughts on what it is to be a small charity in 2016.
But the subject of my first blog is something of a rant!
Us in a Bus works with people with profound learning disabilities and often, complex needs, such as sensory issues and autism. For many of the people we work with, their home is a place of security and comfort, and a place where they spend many hours of the day, and often live for many years. Whilst the nature of the care industry is such that the staff often come and go, some staff are a constant presence in their lives. Home is just as important to a person with learning disabilities (LD) as it is to us – if not more.
Us in a Bus endeavours to ensure that things are done with a person with LD, and not at them – whether its communication, music or eating a strawberry yogurt. Everything we do tries to put the person with LD at the centre of what we do – to say that they are able to appreciate the same rights to decision making as you and I. Which is why I’m going to have a rant about the way that some people with LD and complex needs (but by no means all) are shunted around homes with very little preparation or notice. In the last year, we’ve seen two homes close with very little notice or planning and people moved to other homes. Imagine what it is like to live in a place with your friend Gary for 20 years, only to find that you’ve moved home suddenly to a strange place, with new key workers, and no Gary? How disorienting must that be? One person we’re working with at the moment is very anxious about her planned move. We asked a family member if she’d moved before and if it had been a problem. The answer was that it triggered anxiety so bad, it resulted in her having a severe mental health breakdown! No wonder she is anxious about moving if that’s her only experience by which to judge it.
I’m not for a moment saying that people don’t have to move, or that it can’t be done suddenly. If, for example, asbestos is discovered in the home, or some other environmental aspect is found that necessitates a swift move, then of course it must be done. But it must be done with the person who has LD or complex needs front and centre of the decision making process. The planning, preparation and support must be ALL about that person’s needs. How will their new surroundings meet their needs? What continuity will be maintained? This could be very simple things: does it smell the same/ is it the same furniture/ do they know my favourite foods? Are any staff transferring? How long for? One move we’ve observed saw a person taken to the new home for an overnight stay to familiarise her – which is excellent. But it went so well, her things were brought across straight away and she never got to say goodbye to her home of many years or the staff or friends.
Would we accept that as an optimum moving process? I doubt that this would pass a “Is it good enough for my Granny?” test. We’re certain that all providers start with a best plan and a great deal of goodwill and care at an individual level. But the very best of intentions are often left at the wayside, trampled under time pressures, lack of line responsibility and challenges of a speedy move. As a sector, this is something we need to do better, and I’m holding Us in a Bus’s hand up to say we want to try and help to make this work for people with LD and complex needs.
I’m sorry to start a blogging life with a rant. I promise to write something less rant-y next time! I’d love to hear your views – agreeing or otherwise – and start a conversation.