Dennis,

I think this points out the lack of knowledge that people have about PD.  I
think their criteria were reasonable except for those of us with PD.  It sounds
like their hearts were in the right place, but their knowledge about PD was
lacking.  When they got the information they needed,  they were happy to
cooperate and change their rules to accommodate to PWP.  It certainly is strange
that we can be ok one minute and literally 30 seconds later be immobile.
Someone who didn't know PD would almost certainly be puzzled and think we were
"faking it".

Congrats on getting by this hurdle that was put in the way of PWP.  And congrats
to the agency for being reasonable and backing down when they were proven
wrong.  I wonder how many agencies in the States would have backed down from a
position so quickly when they were shown to be wrong?

Charlie

Dennis Greene wrote:

> F.Y.I.
>
> The sometimes contentious subject of parking for the disabled recently came
> under the spotlight here in Western Australia when some PWP found that their
> applications for parking permits were being refused.  In addition PWP who
> already held permits found that on applying to have their permits renewed
> they were required to undergo reassessment,  after which they too were being
> refused.  The people this was happening to were all those who experienced
> the 'on/off' syndrome, and they were being refused on the grounds that they
> did not meet the criteria for a permit "at all times".
>
> The Parkinson's Association of Western Australia (PAWA) queried this with
> ACROD, the organisation responsible for administering the issuing of
> permits.  Acrod advised the Association that they had received complaints
> that many people who had permits, but did not appear to be disabled,
> were using the Disabled Parking Bays.  In response to this perceived abuse
> they had decided to review all applications for renewal (the permits are
> issued for 2 years at a time) and to apply their existing criteria
> vigourously.  The criteria were that:
>
> 1.    The applicant experience difficulty walking distances in excess of 50
> metres.
>
> 2.    the applicant needed to open the vehicle door to its fullest extent in
> order to enter or leave the vehicle.  (They indicated that to meet this
> criterium the applicant would probably need to be using some form of walking
> aid).
>
> 3.    the applicant must meet either of the above criteria at all times.
>
> PAWA protested this saying that the criteria were too narrow and excluded a
> number of PWP who:
>
> 1.    can walk further than 50 meters but only extremly slowly, and
> hazardously
>
> 2.    because of their tendency to 'freeze' in confined spaces could not
> exit from car doors unless they were wide open.
>
> 3.    experience the rapid daily fluctuations of the 'on/off' syndrome.
>
> Acrod welcomed PAWA's query and invited the Association to make a formal
> submission to their criteria review committee which, serendipitously, was
> holding a meeting two weeks latter specifically, to discuss the subject of
> 'episodic functional limitation'.
>
> As a result of that submission,  PAWA was invited to contribute to the
> working party which devised the new criteria and protocols for assessing
> those of us whose degree of disability fluctuates. The working party made
> several recommendations which were then trialed and, a few weeks ago,
> finally approved and instituted.
>
> Acrod now accepts that PWP who have difficulty walking still qualify even if
> they can walk further than 50 meters.  They also accept that PWP who need to
> open the vehicle door to its widest in order to exit can qualify under the
> 2nd criterium. Finally the following criteria have been agreed for those
> with the "on/off" syndrome:
>
> 1.    The PWP must be able to qualify under one of the usual criteria during
> their 'off' periods.
>
> 2.    The PWP must experience multiple daily fluctuations.  (i.e. at least
> two).
>
> The Acrod application form has been redesigned and now specifically mentions
> the PD 'on/off' syndrome, and  PWP with the 'on/off' syndrome are now
> automatically referred to PAWA's Parkinson's Nurse Specialist for
> assessment.  The system appears to be working and permits are once more
> being issued to those who need them.
>
> If anyone is experiencing similar difficulties with other permit authorities
> I would be happy to forward to them the wording of the actual submission.
>
> Dennis.
>
> +++++++++++++++++++++++++++
> Dennis Greene 49/dx 37/ onset 32
> There's nothing wrong with me that a cure for PD won't fix!
> [log in to unmask]
> http://members.networx.net.au/~dennisg/
> +++++++++++++++++++++++++++

--
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Charles T. Meyer,  M.D.
Middleton (Madison), Wisconsin
[log in to unmask]
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