Friday, March 1, 2013

When disability, cutbacks and bureaucracy collide


THIS is what happens.  And please don't look away.  Disability may not be relevant to you today, but that can change in a heartbeat.   Tomorrow you or someone you love could be facing the challenges that are faced daily by my special girl with bravery and usually with a smile on her face.  But not in this picture.

Smiley's shower chair that no longer supports her at all
She can hold herself up for a while but by the end of her shower
she's too tired.  She's 8 stone so it's hard to keep her upright.
This image is based on a photo taken at Christmas to show her service provider how serious
the situation is, and some supports have now been added to this chair.
But not enough to make her comfortable, or keep her upright.
This was not the post that I intended to publish today, but then her foot got caught yet again on the hoist, when I glanced away for a second, and we were both hurt in different ways.

Most of the equipment that I have to help her with daily living was prescribed at least 5 years ago, when she was much smaller than she is today.  Perhaps I should pay for it with all the cutbacks?  Yes, perhaps I should, but getting the right equipment is not as simple as it sounds.  You see I can't just pop down to my local disability shop - have you ever seen one? - because my daughter's needs are so specific that I need specialist help to find the right equipment.

It need to be comfortable and safe for her, and functional, and easy to use and clean for me.   Today there was another home visit by her new occupational therapist, and yet another supplier went away without an order.  The equipment he brought just wasn't going to work, for lots of reasons:

...The bathroom is too small
...Her legs are too short
...Her body is too bendy
...The equipment is very expensive

Smiley is special, even among teenagers with special needs.  She just doesn't fit standard special needs equipment.  Yet any time I imagine something that might work, it doesn't exist.  A shower trolley that folds up for ease of storage, like a sun lounger.  Nope, no-one makes them.  A fully supportive shower chair that reclines and tilts in space so that I can clean Smiley thoroughly.  Can't find anything like that either.  A suitable vest sling that I don't have to keep taking off and then wrestling with her to put it back on every time I need to move her?  Ah, now that might be possible....  Funny that even google can't provide images though.

But how long will it take to get?  How long will my special girl have to suffer the indignity of almost falling out of equipment that just doesn't work any more?  Or will she be just another victim of the cutbacks?


19 comments:

  1. so sad. That must be so hard for you guys. I hope you're able to get some of the supplies you need, cutbacks and all.

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    1. Just fed up for her: was so hopeful that Friday's visit would provide a solution ..

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  2. what a nightmare for you. Hope you manage to find something, and the funding for it.

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  3. it's so difficult when all you want - and it's a simple request - is for you and smiley to be safe and comfortable. usually no single piece of equipment meets all your needs - so multiple unsuitable pieces are delivered. add special needs on to a piece of equipment and the price sky-rockets. I don't have any answers, but I hope you get some answers soon and don't do yourselves any damage in the meantime.

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  4. I am so sorry that Smiley has to suffer in this way. I sincerely hope that you both manage to get the assistance that is needed.

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  5. it's just not right. What you are asking for is just basic human needs for Smiley, not something that should be impossible, like a bit of the moon or something. I really wish I could manufacture this type of stuff myself, just to help you and others :(

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    1. In fact I'm even looking at that myself, but then it's likely the the occupational therapists won't sign off on it !

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  6. I am so sorry that she is suffering. Makes me feel less annoyed at waiting for a weighted lap pad for my son. Hope she gets the equipment she needs soon.

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    1. Hope we all get the equipment that our children need x

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  7. I have no wise words C but I wanted to let you know I did not look away and I pray you are able to find the equipment you need so your special girl can keep her dignity and smile on her face. Mich x

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  8. That is shocking, poor you and smiley!

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  9. Thanks for all your comments, I've also received some messages with good advice on equipment after writing this, so hopefully that will help too xx

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  10. This is so awful for you both. I do hope the advice received helps you AND some supplier somewhere come up with a solution. There are some things that cutbacks should NOT affect no matter how bad the economy.

    xx Jazzy

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    1. Thanks Jazzy - everything is really tricky now - my babysitter couldn't believe how unsuitable everything is when she managed Smiley for the day on Saturday xx

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