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Ataxia Support Network

Do Not Delay

#1

I’ve learned over the previous weeks that, one must plan ahead in terms of planning for the future. Many organizations (government or other) experience some sort of delay in processing requests. It takes time to ensure all our needs are met throughly and professionally.
I recently met with a care coordinator. It was determined that I required, or could in the future require certain services such as a PSW (personal support worker). I was added to a waiting list.
An OT (occupational therapist) came to visit, she determined I would be best to use a power-chair vs a manual wheelchair among other items to make my life easier. I have to wait for an ADP Authorizer (an arm of the provincial government) to apply for financial assistance.
I discussed with the care coordinator the possibility of having to enter a care facility, there is a 6 month wait list to get a room.
It was discussed that I might benefit from PT (physiotherapy), I was placed on a waiting list.
Years ago I was referred by my family physician to a movement disorder clinic, there was a wait list. Now it is two years long.
So you get the idea. If you think you might now or in the future require some form of healthcare service private or otherwise, please do not hesitate to at least get the ball rolling. Often times there may be a waiting list for service.

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#2

I hope you move quickly up the lists :slightly_smiling_face: Last year I had treatment for a pre cancerous mole, as soon as I detected another one I was put on a list. Lists, and queues, they’re sent to test us :smirk: xB

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#3

I hope so too! It is only recently that I have become impatient with my condition. Normally I would not wish for such speedy treatments.
This is one moment where I most desire my condition to move along or end period. Now I realize where the term “patient” comes from or why a person is called “a patient”! One must be patient! :joy: :thinking:
Waiting has also put into perspective, the severity scale of my symptoms.Or a lack of severity. I’ve found that I either recognize and acknowledge my symptoms and ramp them up to be worse than they are. Or I don’t realize them at all and neglect them.

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#4

Hutchy, a very wise post. Yes, planning ahead and opening up a line of communication with the health authority (or your insurance or whatever “cogs” make up your health care machine) before you are desperate is really important. Wait lists are a fact of busy systems, and your best bet is to get to know about how it all works before you are desperate.

And your comment about having to be “a patient patient” is so true in almost every health care context!

Seenie

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#5

Well I have attained the services of a PSW (personal support worker) two days/wk to help me with showers/baths. Maybe I don’t necessarily require her today, but maybe in the near future. Maybe I’m just stubborn! I know I have to start at some point.
I must admit, having someone bath me is slightly humiliating, but I will overcome this and I know this is needed. My PSW seems very professional.
Less invasive, I have had a visit from a physiotherapist. She has completed her initial assessment on me and will return next week with a plan and start some therapy.
An authorizer from the government will come to my home next week to assess my financial needs for a power wheelchair.
All this seems to me unnecessary at this moment, but I know sometimes these services can be a while to get started.
I’m maybe worse off than I think occasionally (probably more often than not… maybe) But I can’t stress enough, do not delay getting help. Admitting you need it is half the battle. Often times we leave it too long when it comes to acquiring assistance.

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#6

I had another visit from an occupational therapist yesterday. The main purpose of her visit was to assess my need for a power chair. After her assessment she did determine my need for a power chair.
She will send a representative to my home to test a machine.
In the meantime, she is taking a holiday, she will apply to the ADP (Assistive Devices Program) when she returns near the end of the month. The ADP is an arm of the provincial government. They issue funding for disability assistive devises.
ADP takes about 8 wks to make a decision and typically covers up to 75% of the total cost.
This process is proof that we should not delay getting help.
I think I should have started the application process at birth, maybe it would be processed by now!LOL
We will also determine later (if winter ever ends) if my home needs further modifications to accommodate my disability needs. She really doesn’t like the wheel chair ramp at the front of my home. She claims she was present when it was built. She didn’t care for it 25 years ago when it was installed. It most definitely does not meet the current building code of today.
Regardless of the type of services required today, we may need other services tomorrow and therefore, best not delay as some things take time.

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#7

:roll_eyes: Codes of practice change constantly. Just recently (not to be morbid) I had funeral arrangements to make, and was staggered by the costs. An existing, pristine, granite headstone needed ‘refurbishment’ to bring it in line with current codes of practice. Apparently dowels now have to be inserted to prevent falls, I could do with some myself…

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#8

For the disabled dead?:joy:

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#9

Update.
I filed an application this week for government funding (ADP) for a power chair. It takes 8 weeks to determine eligibility.
In the province of Ontario, Canada if you are purchasing a power chair through ADP you must use a specific vendor. A chair is selected from a pool of refurbished chairs (provided it meets your needs).
I tested the Premobile Corpus M3. Once ADP has been approved and one is going to make a purchase, it takes a further 3 weeks to get a chair from the vendor. “Hurry up and wait”! where the OT’s exact words.
So in conclusion don’t be in a rush if you’re in need of funding.
And the process for fitting a device although, may seem like a simple task, it is quite complex. They measure, adjust, hymn and haw to determine the optimum device just for you.

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#10

“Hurry up and wait” is the military’s credo.

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#11

Ha ha!, yes sir, my GF cooks breakfast at our local military training facility.
She has made reference to the military’s use of that line on several occasions.

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