Saturday, September 13, 2014

My Wheelchair, My Life-My Right

It's pretty basic...if you are sick and disabled and cannot walk a WHEELCHAIR is going to be life-enhancing, exciting, enriching, glorious mobility, glorious INTEGRATION, PARTICIPATION...Pretty simple, pretty basic. but pretty MARVELLOUS!

But needless to say, you cannot just throw any wheelchair in stock at a person who needs one. Bodies are different, like shoes. You would not wear second hand shoes because shoes mould to the person who wears them. Thus second-hand does not work and is actually damaging to feet. The same applies to wheelchairs.

But now here in Ireland the HSE (Health Service executive) community primary care teams are doing just this. Giving second hand rubbish to clients. They break down regularly, need repairs, endless phone calls, technician call-outs...endless waiting for mobility to resume!

But even giving a NEW wheelchair does not work, because there is new and new!  The wheelchair must be assessed according to your condition. The wheelchair must be 'condition appropriate' , not just anything on wheels.

The HSE services now believe 'anything goes'.  We've given you a wheelchair, why are you still complaining.  Why...because it's killing me!  That's why. 

It's causing profound pain, distress, unbearable suffering...that's why.

And why has this happened?  Because senior OT's argued to be 'specialists in wheelchair assessments' are NOT!

myself & twin had a wheelchair/seating assessment called a "skilled professional assessment" done by a senior OT in a room that only had a bench.

  •  No wheelchairs in sight (ours HSE wheelchairs were in our Van-were not requested to be brought in to room)
  • There were no other wheelchairs in this room with only a bench
  • There were no cushions, wedges, backrests, equipment whatsoever to determine how a suitable wheelchair could be comfortable or suitable
  • there was nothing - only a bench.
how can you do a wheelchair assessment with no wheelchairs available?

how is rolling up a scarf and shoving it under a buttock to straighten the disabled/ill person (my twin) who is sitting on this bench...constitute "a skilled professional assessment?" 

how can a wheelchair whose wheel flies off in use because they were put on with the wrong bolts be considered "a skilled fitting of wheelchairs"?

How can a wheelchair which steering arm falls off into the road when crossing be considered safe or usable?

How can a wheelchair with no suspension coils for outdoor use be called suitable for elderly disabled people with degenerative spinal disc disease ?

how can a wheelchair supplied with dodgy motors causing dangerous 'fishtailing' (a phenomenon where you cannot steer straight on a cambered footpath) be called 'suitable'. I had reported this over a year ago but it was ignored and only this week did a technician come out to see why my wheelchair was not 'holding' its charge. He informed me the motors were defective, one being 'stronger' than the other which had little function.  On speaking to my OT she nonchalantly remarked "that would be why it was 'fishtailing'" - but I told her this nearly a year ago and nothing was done.  I was left with a dangerous wheelchair.

and so it goes on and on...

On asking for a private independent wheelchair assessment from the only skilled wheelchair assessment provision this side of Dublin I was told they couldn't do this because "they work for the HSE"  but they are NOT the HSE!  So I guess they didn't want to lose their contract by assessing the Kennedy Twins and having to critique the HSE wheelchair provision.

I was told by a senior HSE official 'private independent assessments would not be 'accepted' by the HSE. so you have no leg to stand on!  a private company won't assess you for fear of losing contracts with the HSE, a private independent assessment would not, in any case, be 'allowed' by the HSE. You are scuppered by an evil regime, dead set against clients, service users. Oh yes...evil is the only word to use.

I am demonstrating - my twin is demonstrating on the 17th September outside the Dail at 11am to protest our wheelchair provision and ALL cuts to disability services.  Can't wait!