Austerity power wheelchair assessment

On Friday I had what was called a 'seating assessment'.  I was assured by the OT manager this was not a wheelchair assessment. I still don't know the difference.  The history of this assessment is that Wicklow HSE refuses (to date) to give my twin a decent safe power wheelchair, and mine is not suitable either.

With a new OT manager on board she offers a 'seating assessment'. But it was not a SEATING assessment.  Everything about me was assessed, my eye sight, my movement, my spine, my 'seat' (bum) and ability to move arms and legs. asking questions about concentration, memory and focus were in fact quasi-psychological testing.

I became profoundly distressed in being asked to do movements I can no longer do and burst into tears.  My twin became distressed over the eyesight tests, as it became more apparent this was NOT a 'seating' assessment but a full assessment of our ability to use power wheelchairs. Furthermore it was a MEDICAL assessment done by an OT.

Now this WOULD be good in the normal scheme of events, but Ann and I were fully OT wheelchair assessed in 2012. We were fully assessed medically in London in February. We have been driving powered wheelchairs for two years.  crap HSE second hand ones. But there has  been no 'fault' on our part in driving or using these power wheelchairs. 

The faults are with the power chairs given where wheelchair tyres split, wheels fall off, steering arms fall off etc. dangerous machines, yet the manager said 'health and safety' was paramount (hence the assessment).  But as Ann points out 'health & Safety' is not being addressed by leaving Ann with a wheelchair where wheels fall off, needs new break pads, and has defective motors.

This assessment was NOT about our NEEDS, no, it was about "how can I make sure we don't give the Kennedy twins power wheelchairs"?

When all tests were completed she had to agree we needed them.  But then went on a 'speech' to tell us that the HSE could not provide 'high end' wheelchairs for us, such as wheelchairs with tilt facilities and headrest, etc.  Well excuse me, we have muscle myopathy and sitting bolt upright with no-where to put head is very difficult indeed in various situations such as waiting in outpatients (anything from half an hour to 3 hours) , travelling on long train journeys. Weak muscles and profound fatigue from a disease that causes the energy making organelle - mitochondria- to die is surely an important aspect of our condition?

Then she mentioned that as we 'could walk' this was another barrier to provision.  This is a completely ignorant comment.

wheelchairs are not just for those who cannot physically walk...they are used by people with a range of diseases from Cystic Fibrosis, Lung diseases, heart diseases, muscle weakness, extreme fatigue due to disease processes. Those who , essentially, cannot walk far...We fit that criteria due to five separate processes a) parkinsonism b) mitochondrial disease c) dystonia d) auto-immune diseases e) muscle myopathy.

Coming away from the assessment I was both angry and upset.  Upset by having to 'prove' I was not trying to 'filch' the system, having to 'prove' I was sick and disabled, having to do tests I could not do, and basically being made to feel that in asking for decent, good, safe, stable power wheelchairs designed for our needs constituted asking the HSE for 'high end' wheelchairs.  Even if we were, if it fits our needs so be it!

this was an 'austerity' assessment, a manager trying to see whether we needed power wheelchairs...whether she could deny our needs.

The whole conversation afterwards proved it! I have no doubts about it, Wicklow County Council do NOT want to give disabled /sick people DECENT wheelchairs!

Second hand, reconstituted wheelchairs of 11 years old is a disgrace and a perversion of 'care'. Its time we disabled people told the HSE that wheelchairs are not a luxury item.  'High end' is what is needed for MOST sick and disabled people.  Not crocks with bits flying off!

We will continue to fight....

But why should we have to?