2 As independent as possible?
Independence is a goal for many people with learning disabilities, and it is also a stated government policy. But what does ‘independence’ actually mean? And how do you balance independence with sensible and healthy choices?
Activity 1 Leah and Sheila: choice vs health
First read the account from Sheila, whose daughter, Leah, has mild learning difficulties. This is Sheila’s perspective. Then, based on what you have read, write down what you think Leah and her support worker’s perspectives on the situation would be. Write down one sentence for each.
LEAH: AS INDEPENDENT AS POSSIBLE?
My daughter Leah is as independent as possible.
She maintains (with paid support) her own tenancy in the town where she wants to live, has a long-term relationship with a partner, has a small but important group of friends who mean a lot to her. She volunteers at two places where her help is welcome. She maintains close links with her family and family friends. She can travel on her own on familiar journeys. These are markers of independence which many people who have a learning disability would love.
Much of this has been gained through her own efforts and personal qualities. Yet to maintain this level of independence Leah needs the efforts of her immediate family. Because she lives as independently as possible the contributions we make are almost invisible. The visible bits are her social work assessments and reviews, her social care support hours and her small Direct Payment. But the bits we, her family, add are the bits which add richness, depth and joy. These are the 'added value’ provided by her family.
I’ve watched with concern as my previously fit, healthy, slim daughter has gained several stone in weight, lost fitness, core body strength and suppleness at a young age. I know that Leah's diet is harming her health in the short and longer terms. I also know that raising this concern with the people who provide her support will be seen as interfering. They have a case. Leah has capacity, some understanding of the health concerns and it could be said that she is making an informed choice, in the knowledge of the risks, to eat unhealthily and take little exercise.
The support of family carers can be, and often is, seen as interference and over-protection. At reviews of Leah’s support, I mention my concerns about her diet and heads nod. That’s as far as it goes.
Independence of the sort which Leah has achieved comes with privileges and risks. Leah exercises the privilege of choice in relation to her diet and lifestyle. In doing so she runs the risk of compromising her health. For a parent carer this is a tension which has no clear resolution.
There are many different ways you could approach this. Here are two examples from each perspective.
Did these reflect what you wrote?
As discussed in Session 3, in relation to how Dora dresses, independence and choice are great, but the devil lies in the detail. Translating them into action can be hard. You will explore this further next – with diet again the focus.