Category: Personal

Why I Can’t Support MAID till They Solve Poverty in Canada.

Disabled Couple

I hope you can take the time to read this. My English is far from perfect, but it’s a story I thought was important to share and why I think more people should be worried about MAID for people in Poverty with disabilities.

Summery of MAID

MAID stands for “Medical assistance in dying”. It was brought in 2021 into Canada and started out for people with Physical disabilities that they could not live with and made life unbearable. Someone who’s fire might feel on fire all the time or a big chunk of their life who have been to hell and back and can’t find relief and function and just don’t want to be here anymore and might not even be able to commit self harm due to how badly their medical condition is…

Now we take you to the Updated MAID in 2022 for people with Mental Health problems. The same example could exist above, but instead be all mental health issues that for example someone might not be able to focus, always depressed, can’t make friends, schizophrenia, you name it… They been to every Doctor and Therapist and they just can’t handle it anymore and they want it to end.

Why I’m Against it and an example of imagine being in the shoe’s of someone in Dire Poverty with a Disability.

So you might ask, why I’m against MAID at least till Poverty is Solved in Canada?
Well it’s quite simple and I’m using some personal examples as well as stories have told me over the years. As many of you know I’m an advocate for Disabilities especially trying to fix Poverty for people with Disabilities.

Imagine living in a Basement sharing a 3 bedroom Apartment. Your entrance is a set of steep stairs and you have not only a physical disability but also a mental disability. Your Physical Disability does not allow you proper freedom into the Basement apt and you either need someone to help you step by step down, or you might need to crawl on your hands and knee’s and due to how steep these stairs are you are more then likely forced to go down on your bum. This process could take 10-15 minutes depending on your issue. You in this story have severe chronic pain throughout your entire body that is like pin and needles and not the kind when your arm goes numb, but more like someone just cut off a limb and the pain receptors are on fire and you are not in shock….

Once you get inside you get attitude with one of your roommates who wanted to go outside and had to wait for you. You go to your room and cry and try to forget your day. Why did one interaction ruin your day? It did not… It was you at the Doctors office again because the ODSP wants to make sure your disability not magically healed and wasting not only your time, but the doctors time. You go through a battery of tests on your own no family they abandoned you. Your Doctor asks a lot of questions but half way through you just lose all attention and say whaaat?? It’s your Brain Fog kicking in.. The Mental Part of your disability that hits you hard and at random that is like a Train hitting you, but instead just the cold, background sound of a train passing on in the distance. You can’t focus anymore and the voices kind of scream at you when you hear them, but you can’t latch onto them as much as you want to and just want to close your eyes and go to sleep….

This is just one the many things people on ODSP have to go through when it comes to dealing with Doctors and the Government. Every mistake they make is your mistake, every extra cent they pay you more is your mistake, you are a burden to them and you are treated like a convict, but without all the amenities.

Moving on you get into your room and decide to go through some of your possession, but forgot you lost most of them recently due to the moisture damage of the basement. Your Kitchen Fan is not actually connected outside, you don’t have a bathroom fan and there is no AC, but rather just the cold damp basement that creates a lot of condensation in the basement. Remember it’s not just you but your other roommates as well. You don’t have the energy to deal with it right now and the smell is making you sick to your stomach so you end up going to bed and having a nap in your damp feeling sheets.

You wake up a little later and get a Phone call! Something you spent most of your extra money to keep in contact with doctors, ODSP, and your PSW… It’s your PSW giving you third degree and saying the door is locked. You tell her you can’t make it up the stairs and ask for help, but the roommates are either ignoring you or don’t care… You tell her sorry and she tells you she is going to report you again….

You decided you have to Pee really really bad… You are in a lot of pain so you can’t use your forearm crutches and can’t get an electric wheelchair or scooter because you don’t meet the requirements and instead just crawl to the Bathroom. Thankfully it’s carpeted floor. Sadly it smells bad and feels damp… Oh no someone is in the Bathroom and you knock saying if you can use it. The other girl tells you no and you say you will be quick and she just ignores you.. You hear humming and it sounds like she might be doing something in the mirror not even using the bathroom to it’s fullest. After a bit you hear her finally move like she is about to leave and then all the sudden you hear the shower running… It’s too late you have just wetted yourself because you could not hold it in.

Now you are crawling to the kitchen to get supplies to clean up your mess. Your roommate finally comes out and starts screaming at you and yelling at you and calling you a sick person. You apologies as you never let your mood go sour and always take the higher ground. After you clean up best you can, you clean yourself up as much as you can and head back to the room after using the bathroom.

Sadly Shower day would of been Today, but the PSW was not able to make it inside and now you have to wait till next week. Sadly last week you were too much pain to have a shower due to a really bad flare-up and looking forward to it this week and means you will be without a shower for 3 weeks by the time the PSW is back next week.

As much as you are a happy person you have no working Laptop, Your Phone is very old and basic. Mostly just to make calls sometimes emails work, but you have a lot of “technical” issues with the device. You have nothing to do, you don’t own a TV you can’t afford one. You can’t read because you lost that ability once your mental health problems started with the Physical pain. Your immature eye was bad but now you always get migraines when trying to read more then a paragraph.

You think you better get to bed soon because tomorrow is payday and you need to head to the bank, buy what little you have left after all the costs and make it to the Food Bank and see if you can get someone to actually deliver this month as they forgot last Month. You have to wake up at 7am to book your Handy Bus at 8am, but you have to hope to get through as many other people will be as well and they only have enough seats / people they can handle per day.. Tomorrow is going to be a another rough day…

After all this and with all your problems that you deal with your positive super nice cheerfulness fades away. Over the Months, and Years you slowly break and now you don’t just have your main physical / mental health issues you develop new ones. You gain new Physical ones due to the way you move around without proper equipment. Your mental health goes really bad into depression and other aliments… Things are not looking great…..

If you got this far in this “story” you might thinking that MAID service might sound amazing right now. But think about this. Almost everything above could of been solved by putting their person at the Poverty Line. Not even Over it like most people suggest when dealing with Basic Income and people with Disabilities getting extra, but just at or slightly below the Poverty Line.

Now Imagine having Money to put you at or near the Poverty Line!

An Apartment without stairs, No roommates and your own bathroom! You have a bit of extra money so you have entertainment like a TV or a working computer or maybe even both if you are decent with your money. You can get some basic automation, get a automated lock on the door, a Camera to help you see if someone shows up to know who you let in or don’t let in. Because you now have your own place and you have a bit of money you start to go out to the occasional movie or even eat how at a very unexpensive restaurant. You start meeting people and making friends.

Things are not only great but even better. Because of living at a place with an elevator and no stairs you are qualified for a Scooter! Normally you can only get one if you can use it from your bed to inside your home and out. But because the stairs in the other version you could not… The Scooter alone changed your life. You still use the Handy Bus, but now you have more energy, your able to store things. You even visit more then one store to browse around and meet people and earn a new confidence you never had before.

As time goes on you are so confident and feel less of a burden to yourself and others you able to even partake doing part time work. Not a ton and not enough to make a living from, but something to allow you to contribute a bit to society to help turn you more human and engage with other people… This overtime turns into a love story and you fall in love and get married and have wonderful kids and a loving partner the END!

Consulion?

Fix Poverty before bring Suicide Booths into our Country. The Booths are a slight humor even crude humor… The point is if we can’t even feed, shelter and clothe are most vulnerable people, then why we offering them a death a free pass to death? Everything I said above would qualify for MAID and one simple thing changed the persons life for the better… Yet we rather let them kill themselves as it’s cheaper for society? Where is the sense in that? Humans are meant to adapt, and grow and better the human race… Why we only bettering a few lives?

I’m tired and now worn-out.. I might start going on too much and I’m sure I already have. I really hope you can spread this story as an example of why we need to do better for our people with disabilities in Canada and the World!

Could the Life Glider walking aid be as helpful as it is intriguing?

Disabled Couple

Hopefully given time we will be able to test one out. I am fearful of falling every day. It is a constant part of my life for almost but not quite 5 yeas now and it can be exhausting.

From the moment I wake up, it feels as if I am trying to balance on top of an exercise ball. I am not always sure which way my balance will be thrown when it goes off-course. When it does, it could be an uneven floor, wind, or exhaustion that gets me. I usually end up against a wall, on the floor or playing a painful game of twister with my crutches.

Crutches and an occasional pushed wheelchair however, have been my saviors in the mess. Unfortunately, regular walkers with wheels fall out from under me while those without are too difficult to move. Canes on the other hand have not enough of a handle on them for me to rest against.

The Life Glider might not work for me, or it might be the best thing that I ever encounter. If I never try, we will never know. But I would love the opportunity to at least see either way.

Besides helping reduce the fears associated with falling and the wrenched elbows that come with falling while you are using forearm crutches, the Life Glider can help reduce walking-associated fatigue which occurs to people like me.

So hopefully in the future we can try it out, I am quite excited by the idea.

  • More information on the Life Glider can be found at Mylifeglider.com
  • I suggest that you watch the videos of patients/customers while you are there.

The Life Glider can help:

  • ‘permit upright, hands-free mobility’
  • ‘reduce the fear of falling’
  • ‘reduce the fatigue sometimes associated with struggling to walk’

Chronic Pain Management Program (Pain Clinic) This fall

Disabled Couple

We had our first visit to a Pain Clinic in Thunder Bay last week. Well it’s my first visit to one and Juliet had visited one in Ottawa without being able to finish the program due to her Chronic Vomiting at the time.

The experience was great. This was sort of an assessment / intake before the Pain Clinic Course that we will be attending in the fall.

Juliet was really happy because he was able to do all the different tests on her like the sensory tests that the past Clinic was unable to finish because of her pain, even though she told them to keep going they pretty much refused.

At the end of the day she was beyond worn out and even a few days later she is still having a lot of fatigue issues and pain from the vibration tool he had placed around her ears / skull. But she is in very good mood and high spirits.

The biggest conclusion that we found was her nervous system is completely out of sync. One side of her body was hotter and more painful where the other side was colder and less painful. This was a big important discovery for a doctor to see and understand it.

The biggest solution that he offered for therapy was swimming. Sadly with us living so far north in Ontario, we don’t have an Indoor swimming pool to be able to really accommodate her. His second suggestion was pretending to swim. We sadly are still unsure outside of mentally pretending how one actually swims out of water.

From what we understood from the swimming besides the benefits of exercise portion of things, the body would help provide micro massages all over her body and help stimulate the nervous system. The big thing also was that it be like almost floating in space as she could last longer through the therapy.

Just a note that Juliet has never been able to survive through hands on massage / physical touching therapy and normally causes way to much pain and then vomiting.

The great news and also not so great news is starting in Late September Juliet will be attending 10 sessions at the pain clinic once a Month on Mondays for 3 hours in the afternoon.

The bad news is we have to drive 800 KM’s round trip and as much as I don’t mind driving that long and in fact would drive her to the other side of the planet, It’s a bit hard on her body quite a bit. In fact it’s so hard on her we actually drive there and let her rest for the night. We go to the appointment the next day and then we leave the following morning. Meaning we are kind of stuck 2 nights at a hotel and 3 days in total.

With all this being said and done it only gives Juliet 4 days to recover till we are back on the road again and it’s been 5 days since we were in Thunder Bay for a 30 minute appointment to give you an idea and she is totally worn down.

Our biggest concern of course as well is mental fatigue and the classes themselves. From my understanding they are there to learn and do mental and physical activities. We asked if I can partake being her spouse and caregiver and they seem fine with it, but there could be some complications with it. Sadly there might be someone uncomfortable to having an Able Body person attend. Sadly if this happens it means Juliet is on her own and we both know that will lose a lot of valuable education and information that could be used to make her life better.

Either way, we have not been told yet, but we were warned that is might happen sadly and I don’t really blame that person. Maybe if possible they will let us talk to the person if they were uncomfortable about it and I can insure them if they were willing.

We still look forward to fall Pain Clinic and I hope I can partake in it even if it’s from the sidelines. The classes are going to have 30 people in them so it might be a bit overwhelming but will see how it goes.

Juliet was asked to focus on one major area first. Juliet has decided to work on her facial pain as this causes her the most problems to the point a bit of air hitting her face in a movement can be very debilitating at times. She is hoping if she can get her facial pain under control, that she could get better sleep and have improved mental functionality as well as more stamina to be able to do more in her days.

So this is a really exciting event for us and I look forward to talking more about the experience once we have finished a class or two.

Rejected by ADP & our OT for a Powered Scooter

Disabled Couple

We just had our Occupational Therapist (OT) visit us the other day. Juliet was quite nervous the day before because it was a male OT and she was worried that he would not take her seriously. Thankfully he was a very decent OT, but sadly our main concerns were not able to be dealt with.

Invacare Comet Scooter

We have wanted to get Juliet a Powered Scooter for many years now. We needed to see an OT for this, but sadly it was taking a long time due to a computer error the Doctor made and not realizing it till about 14 months later from the request.

Long story short Juliet has extremely limited movement around the home and outside. Juliet uses Forearm crutches that she can use some days less then 15 seconds before slamming her body against the wall and other days where she can use it for 10 minutes before fatigue or pain takes her out. On the really bad days Juliet ends up crawling on the floor to get to the bathroom, kitchen, etc.

Because of Juliet’s Pain and Fatigue that is caused while walking, it ends up killing off any and all adventures outside our home. To give you an idea since we moved, Juliet has never left the home in 16 months on her own and this means even into our backyard because of the fall risk. You can understand the reason in needing a Scooter now when you really start putting that into perspective.

Royale 4 Scooter

So our hope is that we can get a Powered Scooter to allow Juliet to be able to be more independent and give her the dignity she deserves and let her be able to leave the house and explore our backyard or even go on further adventures.

Before we go on, I just want to state when I say she is a fall risk that she ends up falling against the wall’s about a dozen times a day on her 4-5 trips a day out of her bedroom. Without walls she would be down for the count and even that does not always help her from taking a dive into the hard floor. So as you can see going outside in the wild without someone with her at all times to catch her is impossible and beyond dangerous.

After a very long pleasant chat with the OT, we ended up learning that we can’t be accepted for a Powered Scooter or a Powered Wheelchair because Juliet can use Forearm Crutches for 15 seconds and her disability seems to be discriminated against because of her pain tolerance.

Predator AT Scooter

Can you Imagine being a women in your 20’s who enjoys shopping, but instead bound at home or in the car because simply don’t have the energy and pain tolerance to be able to crutch around in the store?
That is what Juliet suffers from each and every day. I can push her in a cheap wheelchair but then we can’t actually buy anything as I can push her and a shopping cart at once… We know, we tried it more then once.

Now keep in mind the OT rejection is based on the criteria of Assistive Devices Program (ADP). So I decided I needed to learn what the criteria is and sadly it was quite a short requirement and pretty much said you needed to use it within the home itself daily.

Basic Mobility Requirements:
Funding is restricted to those Devices that meet the Applicant’s basic mobility requirements as defined by the ADP for funding purposes: The Device must be used on an ongoing daily basis. The required and intended use of the Device must be to provide mobility on an ongoing daily basis within the Applicant’s place of residence and to gain entry/exit from the Applicant’s place of residence. An Applicant’s place of residence may be a home, apartment building, longterm care home, chronic care facility etc.

Right off that bat Juliet has enough energy to normally be able to get around the home besides going into our basement. So instantly she is disqualified. Even if we lied and we are not those kind of people, so it’s not going to happen. We simply just don’t have the room / layout for a Powered Wheelchair let alone a Powered Scooter.

Non Eligible Mobility Requirements:
The Program does not provide funding for equipment used intermittently or as an alternative means of transportation (e.g. substitution for car, taxi or bus).
Funding is not provided for mobility devices, including components, used solely for:

  • Pain management
  • Travelling to and from destinations in the community
  • Recreation and social activities
  • Post-operative needs
  • Training, exercise or therapeutic purposes
  • Work
  • School
  • Sports
  • Feeding, sleeping and other non-mobility related activities.
    Source: health.gov.on.ca

So ignoring the fact this list pretty much removes every single usage known to person… Lets go ahead and take it one step at a time piece by piece and see what we can come up with.

Pain management:
This one has to be the biggest joke for those with Chronic Pain like Juliet. She has pain that is so bad that she can blackout if she does not fall and smash her head in first. I don’t like using words like discrimination but I feel this sadly fits this for those who suffer from Chronic Pain and who need devices to get around.

Travelling to and from destinations in the community:
So you can’t use it to go to your mailbox if it’s outside your home, like at a community mailbox. You can’t go to a local community event down the street and you also can’t use it to visit your neighbors right next door as it’s a destination in the community…

Recreation and social activities
I’m almost 100% sure the person who made this list up has never met a disabled person before or has some sort of grudge against them.
So let me get this right, someone with life time disability should not be attempting to get a Scooter / Wheelchair to engage in recreation and social activities?

Post-operative needs:
This one makes some sense but I do hope there is a temporary program that is offered to allow them to be more comfortable while recovering.

Training, exercise or therapeutic purposes
Training & Exercise I sort of understand as it falls back into sort of the Post OP temporary needs again.
The thing that concerns me is the therapeutic purposes… I assume a Lawyer did not write this nor a doctor… Lawyer knows how to use a dictionary and a Doctor knows that therapeutic also means a treatment and a therapy.
We are contacting an Occupational Therapist to be given a treatment to help Juliet to not crack her head on on the pavement.

Work, School, Sports
I can sort of understand the Work part as if you can work you can also save up and buy a Scooter honestly. You could use another form of transportation temporary like a City Buss, etc till you can buy yourself as Powered Scooter.
That being said School, and Sports seems a bit silly. Just think about Juliet’s conditions and then having to navigate a school all day. She can’t under her own power move a manual wheelchair either, so now someone in the school has to push her around? How much is this costing the tax payers for 12 years of education?

Feeding, sleeping and other non-mobility related activities.
I can understand this. Buying a Scooter or Wheelchair just to eat in and that is it would make a lot of sense of not being very cost practical for such a device.

What Juliet could be using the Scooter for, outside of the list above:

  • Getting around outside the home. Visiting me in the backyard garage or visiting me and taking part of activities around the yard.
  • Using the Scooter inside large buildings and Stores. Outside of her using it to travel to a store, she can be use it in the store to be able to interdependently buy things and actually pick up items and move them around. Right now she can’t hold items with her forearm crutches and she can’t push a shopping cart around either. Right now Juliet can’t partake in shopping at all besides walking beside me and even then she runs out of energy before we make it through the store and has to go sit in the car like an animal.
  • Mental Health. Not being able to leave the home and not having the dignity and independence takes a big toll on the human mind.
  • Doctors Office. Our doctor’s office is really big in size as it’s a mixed Hospital as well as the Clinic. Last time we went it took Juliet over 15 minutes to get from point a to point b where it took me about 30 seconds because of how much fatigue and pain she was suffering. She wanted to be independent so while I filled out paper work for her blood work she went to the office where it’s done and I found her almost at the office doors about 15 minutes later.

In the end the OT suggest to pretty much beg on social media for a used Powered Scooter. He did not say the word beg, but he said ask for a free one in your town social media like Facebook. He told us that the Batteries would be more likely dead and the costs would go up. The last thing we are going to do is beg for help in fact this only motivating me to spread awareness to the issues and concerns and share this with others and hopefully help fix the system in the long run.

The OT also suggested using charities, but they would only cover part the cost and we would have to pay for the rest. Downside is we are poor we just don’t have said money to cover the fraction of the cost right now, but it’s an option down the road if we must go that route. You also have to apply many many times to said charities to even be considered.

We thank you for taking the time to hear our story and thoughts on the situation. Honestly it’s quite heartbreaking to have such a modern society in 2019 reject someone the chance to be able to leave their home and be part of society more. Hopefully we can all do something about it in the long run and give people the dignity and independence they deserve and require.