I’ve had two family carers contact me in the last month about difficulties they are having with their relatives support. Both young people have been in supported living for just over a year (with different support providers). Both have put on an excessive amount of weight in that time – one 4.5 stone and the other 5 stone… IN A YEAR!
Both parents are being viewed as interfering and controlling and not letting their son or daughter ‘grow up’, with similar excuses being used – ‘he’s an adult, we can’t tell him what to do, it’s her choice we can’t stop her eating what she wants’ … oh, and then there’s a bit of ‘mother blaming’ and ‘difficult parent’ labels being chucked in for good measure when the parents raise concerns.
I wish I had been shocked by this but it’s sadly an all too familiar tale! IT DOES MAKE ME CROSS THOUGH!
Why does this keep happening?
In some cases I think its just lazy support and there may of course be an element of that involved. It’s more likely however to be that the balance of what’s important to people and what’s important for people has tipped too far in the wrong direction. When choice and control becomes all choice and no responsibility then people’s health inevitably suffers.
Years ago of course people with learning disabilities had their lives restricted. They were infantilised and deemed incapable of making their own decisions. No one wants to go back to those days. Somehow though, we’ve tipped too far the other way and we are not doing them any favours, in fact we are doing them great harm.
I also think that the rules that apply to the rest us seem to have gone out of the window in these cases and common sense seems to have gone with it!
Living alone I often don’t feel like cooking, especially after a long day. The idea of a takeaway is very appealing and easy to arrange. I click on an app on my iPad and a man appears at my door with my dinner. Now I know that’s not good for me so I often make myself to go the shop or defrost something from the freezer. I know the consequences of having takeaways too often. I know isn’t good for me. I’m already heavier than I’d like to be. But, as a treat I have one every now and then and not just when I feel like it.
The argument that ‘we can’t tell people with learning disabilities what to do because they are adults’ simply doesn’t wash with me. It’s a cop out! There are ways of encouraging and helping without taking away choice and control. It just needs a bit more work and thought. After all, none of us have complete freedom to do what we like, when we like. We all have to take responsibility for our health and too much of a good thing is bad for all of us. We all have restrictions in our lives and to a degree are dictated to. I have to get out of bed in the morning, go to work, pay my bills etc. etc. So, why do we suddenly think as adults that people with learning disabilities should always have their own way. If we are truly treating people as adults them we should be helping them to understand this.
Simply saying it’s a person’s choice because he/she has the capacity to make decisions is not acceptable when those decisions are threatening their health and well-being. And, yes I know the Mental Capacity Act states that people, all people have the right to make unwise decisions but people with learning disabilities should also have the right to be supported to make better ones and to understand the consequences of their decisions.
Good support should be encouraging people to take responsibility for their own health and helping them to do this in a way they understand. Support staff need to be supported too and trained in person centred approaches, especially Important to and important for and supported decision making.
One mum I worked with was told by her son’s Care Manager that they couldn’t do anything because her son was happy where he was. Well I doubt he’d be happy if he had a heart attack or a stroke, got Diabetes or other obesity related health issues. So, where does the duty of care sit in all this?
As far as I’m concerned, putting on this amount of weight in such a short time should be a safeguarding issue. I’ve already raised it with the Quality team at OCC but I’d really be interested to know what others think, especially support staff or supported living managers. I think I can guess what fellow parents will say but your comments are very welcome too. .. it would be interesting to see the scale of this and whether it’s as common as I believe it is.
At OxFSN we are offering training to Providers on working with families. This is something I did when I worked for Dimensions and we address issues like this within the workshop as well as exploring the parent blaming and difficult parent labelling. If you work for a learning disability provider and would like us to run this workshop, get in touch to discuss. Info@oxfsn.org.uk.
A Bit Missing 
Supporting a family friend last week at a crisis meeting I was astounded when we raised concern about eating habits /diet/engagement /excessive weight gain (possibly partly due to meds)in a residential home for youngsters supported with very high level need, The service provider is known to be failing him and other residents on many levels and because of this (In my view) he was at risk of being sent to an ATU. I have met some staff and observed them in their workplace over a year ago when the place opened with a new provider,l with a great track record! I was alarmed then , I met pleasant staff but lack of evident training motivation and ability to engage was worrying not to mention one falling asleep while I was there. His mother has had to continually raise concerns to improve care and safeguarding and was recently told she was the cause of stress in staff because of her involvement.
This immediately eang bells with mw. Similar problem in different setting. “She’s an adult, she can make her own choices” even if that choice is unhealthy! We’ve arranged a mental capacity assessment and ageeed a “best interest decision”. Fingers crossed.
Sadly, despite the supposedly high level of care provided for my son, these points ring very true with me: “it just needs a bit more work and support” and “common sense has gone out of the window”. This is SO familiar, although in the case of Sebastian he LOST a huge amount of weight within a couple of months and was hospitalised with malnutrition 😦 It beggars belief that the care with which we have raised our children to adulthood is shunned in the name of an “independent life.” The duty of care to a learning disabled person is surely for the carers to MITIGATE for the learning disability as far as possible, and certainly not to allow for any potentially detrimental consequences to be exacerbated.
Will keep saying, once you are dead you have no choices at all…