Independent Living programs

Hi there,

In November, I had a flicker of hope for hiring intervenors for myself.  And in February it was rudely snuffed out.

An intervenor is a professional who provides visual and auditory information to those who have both a vision and hearing loss.  They also guide and support the consumer with vital information.

The intervenor is very Important, especially since a Deaf-Blind person has a limited world.   Limited due to, well, obviously, vision and hearing.  Missing things and signals, missing conversations and having to deign to writing or using technology to converse.

That being the case, you would think that Deaf-Blind would qualify for Independent Living funding?   Think again!

The program I found in November provides funding to individuals who are disabled who have difficulties showering and other hygienic daily activities, getting dressed, taking medicine, cooking and probably driving to appointments etc.  Two of my ataxia friends use this funding!  I figured, because I am ataxic, I can apply, but my goal would be to hire intervenors, not Personal Support Workers.  Who, generally, do not have ASL skills at all.

I was told twice that I do not qualify for Independent Living funds because I can do all those things listed above independently.  Heck, I get my children dressed and out the door to school.

I feel that this independent living funding is limited to those with physical disabilities.  I am thinking that policy need to be changed!  It should be open to people with Deaf-Blindness as well.

This is my thinking:

A person with severe disability, let’s call her Kate, who has Multiple Sclerosis, would need assistance with hygienic activities, getting dressed and eating.  But they could hear, and communicate fairly well.  Right?  (Of course I am not an expert on MS, but do know that their speech does deteriorate).  Kate can go to the doctor herself, leaving her worker in the wait room, because Kate can converse and hear the doctor.  Further, Kate can go shopping solo, and if need help, can ask a store worker for help.  Her voice is loud and clear, and she can hear the mumblings of a  testosterone-charged teenaged shelf-stocker.  Kate could also go to the bank and privately have a serious conversation about RDSPs.

In essence, her disability is not limiting to communication, listening, speaking, and finding things on shelves, or reading small print.

Now, on the flip side, the Deaf-Blind person, me, does need help communicating with almost everyone who cannot sign.  At stores I usually grapple with finding the right things, reading small print, finding prices, and speaking with that teenaged shelf-stocker.  I typically avoid trying to converse, unless I am pressed for time.  I can, then again, can’t really, go into a bank a start a conversation on RDSP.  I would need a lot of paper, and a patient teller.  I can go see a doctor, but again, would need the paper and sharpie.

With an intervenor, I could go to all these places and communicate with ease.  I would also be able to find things quicker, and prices quicker, with an intervenor (see next article).

So, which is more important, having a worker help Kate get dressed and cooking a healthy lunch, or helping me communicate with that mumbling teenager?  Oh THERE is NO Difference!  There is no “More Important”!  Both are needed, both are essential!  All disabilities have their challenges and there are solutions available, but only to some!

Yet, the current view is that people with physical disabilities who need help with showering, getting dressed and so forth need funding to hire a support worker.  But, why can’t that same funding be applied to those who require intervenors?

I am pretty sure that Intervenors is not included in this policy, not because of its low incidence rate for Deaf-Blind, but because the government already funds intervenors, for children!  And for those with intellect delays.  I covered this in a previous blog!

A full policy review is needed!

Next: Shopping with a Deaf-Blind consumer

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