To err is human, to live fully is divine
When young people move to adult services, they can be vulnerable to a sheltered lifestyle that remains that way for years, blighted by desires to make them ‘safe’ and ‘settled’. What about the right to make mistakes, take risks and adapt how you live as you change? asks Suzanne Gale
Transition is ‘the process of changing from one state or condition to another’, according to the Oxford English Dictionary.
As an adult, my life has been a steady stream of transitions, whether in employment, housing or relationships. Life has rarely stood still and I’m sure many readers can identify with this.
So why do you often only get one go at transition when you are an adult with a learning disability?
The Special Educational Needs and Disability (SEND) guidance acknowledges that there are a number of transitions during childhood, which are generally linked to education. It then notes that we should have ‘high aspirations and expectations’ for children to successfully transition into adulthood. But then what?
There are, of course, excellent examples of people with learning disabilities living full, varied lives. We can celebrate many success stories – actors, fashion designers, artists and musicians, as well as people with a learning disability getting married and successfully being parents (who’d have thought?).
However, the fact that these stories are newsworthy shows just how rare they are.
Once someone is settled, moving on is rarely discussed. The old ‘If it ain’t broke, don’t fix it’ mentality kicks in
Change avoided
I have seen countless examples of people living in the same place and being supported by the same organisation from the time they go to school until they are long into adulthood. It can be comforting for family members when things stay the same, and decisions to avoid change can be made with the best intentions.
However, this does not allow for freedom of decision and therefore limits options for transition. When you only know one thing, one place, how can you make an informed decision about whether you want to stay there for the rest of your life?
Local authorities have strategies that identify a move towards needs-led supported living but, in reality, people almost always move to the most cost-effective placement. Those with ‘challenging behaviour’ often live with the only provider organisation that will agree to take them. Once someone is settled, there is rarely any discussion in reviews about moving on. The old ‘If it ain’t broke, don’t fix it’ mentality kicks in.
However, if those people did not have a learning disability, they would be allowed to jump into any number of disastrous relationships and make as many foolish decisions as they liked.
And don’t even get me started on employment opportunities – if a person with a learning disability shows an interest in working in a coffee shop when they’re 15, there are no prizes for guessing where they’ll be working when they are 45. What happened to career change?
Safe life
Obviously, the issues are the time, energy and money that it takes to support people to transition through their life at their own pace. We know how badly it can go wrong when people are not properly supported; it is therefore often the case that a limited, safe life is preferable to a life with so much risk attached.
We just do not target resources to support everyone properly to make the changes they want to make when they want to make them. I cannot even begin to calculate how I would arrange, cost and gain agreement for funding to support someone who, after a relationship breakdown, wanted to move house, get a new job and start going to evening classes to meet new people. Yet this is what I would actively encourage someone to do if they did not have eligible support needs.
We must be able to find a middle ground as well as ways to empower people, to respect decisions they make about where they want to live, where they want to work and who they want to spend time with. We must be clear about the risks and what will happen if it does not work out. And then we need to let them have a go.
Yes, we need to ensure people are not abused and exploited because of their learning disability; we also need to allow people, if they have the capacity, to get hurt. If we do everything we can to stop them getting hurt, there is a chance we may also stop them being happy.
Suzanne Gale is a consultant who works on projects across the UK that improve housing, employment and lifestyle options for marginalised people