Recent events involving a dear friend of mine and her lovely family have left me reeling. I feel the kind of frustration and anger that I’ve not felt for a long time (if ever!) …and it doesn’t come close to what they are going through.
http://mydaftlife.wordpress.com/2013/10/22/when-is-an-advocate-not-an-advocate/
This post was to be a positive post about working with families and the need for equal partnerships but recent revelations through my friend’s blog have made me think again about the reality for some families so I’m starting afresh.
My friends experience, before and after her son’s tragic and avoidable death highlight to me everything that was wrong (and is wrong) in some parent/professional relationships. It demonstrates, all too clearly, what happens when one side hold all the power and control and families are rendered powerless. When the choice and control agenda and the Mental Capacity Act are used (wrongly) to exclude families rather than see them as partners and experts on their own child. When they are viewed as difficult, obstructive or interfering and … (and this angers me the most)…when they are deemed not to have their child’s best interest at heart!
And yeah, yeah…I know there will be some people reading this who will say “well some don’t”, and I know that there are rare occasions with unscrupulous people, but these really are the rare exception, rather than the rule!
I’ve worked for years promoting partnership as a way to “level the playing field” but, I wonder… how can the playing field ever be level if as a parent you’re not actually allowed on the playing field (or indeed into the park!)? How can there be a balance of power if those with the power don’t share it and change the rules to suit their own agenda? How can there be partnership if there is no transparency and honesty? How can you work with us if you judge us and don’t understand our journey… and how can we trust you to do what you need to do to support our loved ones if you don’t trust us and you exclude us.
The majority of these issues are the result of our children growing up and moving into adulthood. It almost feels as though, for some, it’s a chance to get us (those difficult parents) out of the picture. The reasonable part of me likes to think that its because those who need to understand, don’t appear to understand what it’s taken and what we’ve been through to get to this stage.
Here’s a very brief snapshot!….
By the time our child reaches adulthood we’ve already invested years of love and caring to keep them safe, happy and healthy. We’ve spent countless hours with numerous professionals and therapists (every kind of therapist) helping them to do things that most children do naturally and spent sleepless nights sitting by their bedside when they’ve been unwell (or just sleepless nights because they don’t need to sleep). We’ve had our child assessed (hundreds of times for lot of different things…and usually to get the things that other kids take for granted), denied services and support, waited on waiting lists for basic needs like a break for us or a wheelchair, or equipment, or housing adaptations for them, dealt with mountains of bureaucracy … I could go on but perhaps you get the picture!
Then when they become an adult it sometimes feels as though we are viewed as no longer relevant, no longer necessary…a kind of “don’t worry now dear we’ll take it from here” approach.
How do you think that feels?
How would you feel if that was your son or daughter?
As parents of disabled children/adults we can be really good allies! But being good allies depends on those with the power letting us be… and there in lies the problem…some people still hold onto the power in spite of personalisation and personal budgets.
The cynical me thinks this is because actually some professionals like it that way! it keeps families in their place, makes their job easier and helps them retain the “expert” role. The hopeful me wants us to work together with our child at the centre of everything we all do and hopes they do too.
My personal experience tells me this is possible with the right approach and right attitude to working with families.
I’m lucky (well I say lucky but it was bloody hard work and it took years!) that I am no longer a disempowered parent. I no longer battle. I like to think that I now negotiate strongly from a position of power, due in part to the fact that I’ve gained a fair bit of knowledge along the way… I work with people who respect this and value my input, from the professionals I work with to the senior staff and the support team from the fab organisation who support G…But, the system shouldn’t just work for people like me, it needs to work for everyone…the parent who can’t get to meetings because of their circumstances or because they are exhausted…the parent who can’t express themselves or doesn’t understand the jargon!
So as professionals, what can you do?
Work with us and see that we only want the best for our child.
LISTEN TO US and learn from our experiences. .. we have a lot of experiences and are happy to share them….and learn from you in return
Relinquish the power... embrace personalisation and work in a person centred way (because this is the only way and promotes partnership with families) and keeps our kids at the centre of everything about them! …it quite frankly is the only way to work and the only thing that makes sense!
And….
Stop treating Families like “THE ENEMY”.
A Bit Missing 