Wednesday, 14 January 2015

choice and control ~ a letter to the People Directorate

I read it in the minutes of meetings, in letters, on the council website.  I hear it tossed casually into conversations with little thought as to the meaning - not just what it means right now, but what it ought to mean, what it has the potential to mean - one day.  Choice and control.  They're buzz words, a convenient shorthand for 'those in the know', and oft referenced as aims of the Personal Budget (PB) system.  You know what they mean today, to you, but how often do you give any thought to what they mean to parent carers?  
We have a child who is, and may well always be, different. Not better than other children, not worse, but different.  By extension, our family is different too.  This child and their differences become a defining feature for all of us, a reference point to the outside world.  "Who's Claire?" "You know, the one with the weird sister".  Maybe since a diagnosis, maybe since a meeting, maybe since birth, maybe even before the phrase 'choice and control' had been significant, some families have been different.  Most parents get so accustomed to arranging their lives around (and including) the needs of their children that we simply cannot comprehend any other way, and this principle still applies when your child has a disability - choice and control seem like lovely ideas, but not really related to everyday life.

Every ordinary thing that you do as a family is impacted when there is a child or young person with additional needs in the mix.  Going shopping, going on holiday, enjoying a meal, watching a film at the cinema, going swimming, arranging a birthday party - very little can be done on the spur of the moment, everything has to be considered in relation to those needs, researched and discussed and researched a bit more.  Take the example of choosing a new car - is the boot big enough for the wheelchair?  Is it big enough for the next wheelchair he'll get in a few years when he's grown?  If the chair is in the boot, does that mean you can't fit any shopping bags in?  Sliding doors? How high does he have to step up to get in?  Are the back windows electric?  Can you operate them from the front?  Can you prevent them from bring operated from the back?  It might sound like an unimportant detail, but not if you have a child who can't be relied upon to follow instructions about having windows open or closed, or if you have to regularly pull over, get out of the car, walk around, open the door, and wind the window.  You don't clock the restrictions necessarily, they're just there, factored into everything, and you work around them - you don't have any other option.  You can't imagine any other way. 

Generally speaking parent carers recognise and respect the fact that for the professionals involved with our children, this is your job,  but sometimes it can feel as though that only goes one way.  We don't get to walk away, we don't get days off, this is our life.  Daytime, nighttime, weekends, holidays - constantly on shift.  Even if our child is elsewhere - at school for example - there can be a phone call at any moment and we have to drop everything, no matter how important what we're doing is, no matter how many weeks ago it was planned,  no matter how inconvenient it is for other people, we have to go.  Whether we want to or not.  This is our reality.

Parent carers will have had to come to terms with the loss of those ordinary expectations of choice and control over various aspects of their lives as a family, as well as specifically in relation to that child's daily experience.  Education for example, involves numerous decisions which are relatively straightforward when being made in relation to mainstream children (by which I mean children without additional needs, not those that attend a mainstream as opposed to special school) - which school, which after school clubs, packed lunch or school dinners.  The hugely reduced options available when a child is not ordinary mean instead you might have to chose between a school you think they'd hate, or another which is an hours drive away.  It's not a case of which afterschool clubs you think they'd enjoy or benefit from, instead you have to hope that there are some.   As an example, my second child has a choice of two or three clubs, every lunchtime and after school every day.   He's in an ordinary secondary school.   My youngest child is still at junior school,  but has a choice of twelve different clubs held during the week.   My eldest, who attends a special school, at secondary level, where three clubs run from November to the end of the school year.  They don't run the first or last week of each (six week) term, two run on the same day of the week, and as places are limited, names are picked out of a hat to get a place.  This isn't intended as a dig at school - I understand the issues with staffing levels and so on, but that doesn't change the fact that the concept of choice and control differs wildly in relation to these differing children.

The medical world is another arena where as a parent you can be very quickly out of your depth - many parents have been in situations where they have a choice regarding the treatment of their child - but is it really a choice, if all you're able to do is make an uneducated guess at which will be the least bad outcome?  Is it simply a case of selecting the lesser of two evils? Is that the same thing?  And can that really be seen as having a genuine choice, or any real level of control?
The systems - by which I mean the structures,  procedures,  guidelines and restrictions - that have been in place for so many years are starting to change. The vast majority of difficulties that my family have encountered over the years have been not because of the individual OT or social worker or manager, they've been because of the inflexibility of the system, or the lack of common sense that could be applied to a situation to ensure the best logical outcome.  The importance of best value as opposed to cheapest minimal solution cannot be underestimated, and while everyone is very aware that there's no extra money available, that is exactly why working in partnership with parents and other professionals is essential.  PBs are a way of re-jigging what there is so that it goes further, so flexibility and thinking outside of the box need to be respected.  Consider the example of a changing table that folds down over the bath.  Yes, it ticks all of the essential boxes. But what about when this then prevents the rest of the family from being able to comfortably use the shower?  What about when siblings then repeatedly knock their heads on it when they're messing about in the bath?  Yes, you can work around it - but then the children can no longer share a bath,  impacting on their relationship.  Showering for the adults becomes an awkward exercise in leaning and balancing, instead of ten minutes of (desperately needed) blissed out peace standing under cascading hot water.  The flexibility of PBs mean that (eventually, in theory!) parent carers will be able to take all these other aspects into account when looking at equipment and services, so being able to chose something that will actually work for their child, in their family, in the real world.  This should mean less expensive equipment sitting around unused, which benefits everyone.
Having some measure of influence, some level of authority in the lives of our children  - it shouldn't be too much to ask for, surely?  With so many options removed from families by a stroke of fate, it seems only right that chances to make the most of the opportunities that are still available are promoted.  I've been in rooms where I've been desperately clinging to the last tiny shreds of the illusion of control, wanting to fall to the ground and plead against the inherent injustice of this child's life, defined by their limits, their needs, their complexity.  PBs have the potential to reestablish the core component of the role of a parent carer - the opportunity to be a parent - with the ability to make decisions and ensure a peaceful as possible family life, instead of feeling your primary function is to act as chief medical, educational and social care officer for this young person to whom you happen to be related.  Used confidently, creatively and effectively they have the potential to reintegrate the family - it's that simple.  


  1. Great points, but I just want to add that my worry is that there will not be enough hours in the day to educate myself as a parent to be able to make good choices x

  2. Absolutely - accurate, reliable information needs to be made available to parents and young people so that they can make the choices that are right for them. I think it is up to the council to start thinking outside the box and seeking providers, looking into what is out there - it's unrealistic to ask parents to start from nothing, because we (or I at least!) don't know what is out there to go looking for it! Hopefully this might be the start of big changes, but mainly a change to do with being respected as knowledgeable people essential to our children's daily lIves, with the right to influence what goes on for them in the same way as if they were ordinary mainstream children/young people.
    Thank you for pointing that out!

