Living with disability

[Kimmio Laughterlove]

Kay. You ask a really good question - whether we "owe" anyone a decently paid job. I too, know many people with disabilities who are well employed. I do wonder if people with disabilities (and other minorities to be fair) are more vulnerable to specific trends in the workforce - such as contract employment without benefits. For example, as an able-bodied woman in good health I have few needs for extended health benefits beyond dental and eyeglasses. However, once I became Matthew's mother our need for health benefits exploded. Without medical benefits many families, or people with disabilities, cannot afford to be off government supported benefits simply because they become responsible for very high costs the "typical" family or individual does not need to manage. Many have argued that a better approach might be to allow people who meet a certain threshold of medical need to be employed but retain specific government supported benefits. This would allow people with disabilities access to meaningful work where they make a contribution to our society, including paying taxes, but retain the specific government funding they might need to keep them on more equal financial footing. In short, their disability does play a disadvantage in their ability to accept specific types of employment, and maintaining benefits would be a strategy to address the inequality.

Just to give you a sense of the costs (bearing in mind ours are high because Matthew is so high needs). Matthew's wheelchair cost OVER $32,000. His drugs and g-tube formula exceed $40,000 a year. His feeding tube hardware (syringes, tubing, feed bags) costs are about $2500 annually. His diaper/incontinence costs probably run closer to about $4000 annually. His nursing costs easily exceed $100,000 annually. While nursing and support worker costs are often covered by government benefits, and wheelchairs are funded up to %75, huge chunks of the other costs are only covered via health care benefits - and wipe many people out financially. Many people with disabilities remain on ODSP who could work simply because they bear huge medical costs not typical for people without disabilities and by going off ODSP they lose other benefits.

That's a lot of money Daisy Jane!

I have my prescriptions still covered. It used to be indefinate prescription coverage if you qualified as PWD status and then went to work and didn't receive any income assistance. But they changed it to automatic year to year assessment so maybe I'll be cut off. I don't get a lot of prescriptions normally. What I really need access to is transportation subsidies. But I don't qualify.

 

[Kimmio Laughterlove]

But maybe you'd turn into a whiner too if you 'd had a lot of discrimination to always put up with - even the subtle stuff. It gets felt and often internalized. I can empathize.

I didn't mean that to come off as harsh as I realize it did just now. Sorry. Just saying I get the frustration bit!

 

[DaisyJane]

I actually can agree with the "turning in to a whiner" statement to a point, though I am unsure how to phrase it gracefully! I think I am someone who tries to see constructive solutions and tries hard to unpack issues. That said, I know there have been times that I have been totally and utterly overwhelmed by my journey of special needs parenting. I am aware that during those times my anger, frustration, disillusionment, or grief may have seeped through my very pores. I know there are times that I have not responded as constructively and graciously as I ought to have.

So, in the end, I do see where Kimmio might be coming from - that one can only live in a crucible for so long before, no matter how hard they might try, their stress becomes evident in subtle, and not so subtle ways and that this behaviour is carried out to the wider world. I do believe people may develop a defensive "skin" if they feel always under attack.

I don't think it is confined to living with disability, though. I am sure we can think of lots of situations where our circumstances led us to behave in ways we were less than proud of, but in the heat of the moment, seemed unable to influence.

Or maybe it is just me.

 

[DaisyJane]

That's a lot of money Daisy Jane!

I have my prescriptions still covered. It used to be indefinate prescription coverage if you qualified as PWD status and then went to work and didn't receive any income assistance. But they changed it to automatic year to year assessment so maybe I'll be cut off. I don't get a lot of prescriptions normally. What I really need access to is transportation subsidies. But I don't qualify.

It is indeed. We have been very fortunate to have good benefits and financial supports that make this life manageable. I am also very fortunate that my husband has an excellent job and is a very good provider. This has allowed me to leave work and manage Matthew's care without living with unbearable financial decisions. I try to constantly remind myself that, in many ways, I am an anomaly and I am very, very fortunate . Most parents of kids with needs as high as my son's live a very different life and I know many, many families who struggle to make ends meet and live with unbearable financial stress.

I think it important to articulate that, while we live in a country with socialized medicine. there are many ways that people with chronic and serious disabilities bear costs that the public, broadly speaking, is unaware of.

 

[Kimmio Laughterlove]

I used to keep my chin up about it @DaisyJane. Not sure exactly when I got to the point of saying "This is bullish*t!" it was all my experiences, personal, and with seeing what clients were putting up with all rolled in to one. Plus grumpy to be barely middle aged with CP ( mild compared to Matthew I realize) and feel like a senior already. Wasn't ready for that to happen. And the whiner stuff is part of the depression I'm experiencing, too.

 

[Kimmio Laughterlove]

@DaisyJane employment statistics supports that people with disabilities are more vulnerable to employment trends, but are often discriminted against in hiring at all times. But especially when the job market is "an employers market". When they are trying to fill labour market gaps a big push gets on to promote hiring PWDs. But when there are no jobs PWDs are among those least hired.

 

[Seeler]

It is indeed. We have been very fortunate to have good benefits and financial supports that make this life manageable. I am also very fortunate that my husband has an excellent job and is a very good provider. This has allowed me to leave work and manage Matthew's care without living with unbearable financial decisions. I try to constantly remind myself that, in many ways, I am an anomaly and I am very, very fortunate . Most parents of kids with needs as high as my son's live a very different life and I know many, many families who struggle to make ends meet and live with unbearable financial stress.

I think it important to articulate that, while we live in a country with socialized medicine. there are many ways that people with chronic and serious disabilities bear costs that the public, broadly speaking, is unaware of.

DaisyJane - I remember that you have two other boys and I'm glad that despite providing for Matthew's needs you have also been in a position to care for their needs. Sometimes the other children in a family get forgotten when one child's needs are so overwhelming.

 

[KayTheCurler]

Kimmio -I doubt any of us know what would make us become a whiner. I certainly wasn't saying that you, personally, were under attack when I wrote my words. It still seems to me that supports are necessary, but we just don't have a handle on the best way to provide them. People fall through the cracks. People take advantage. I don't know how to fix this.

DaisyJane - I appreciate your honesty about the costs of raising Matthew. The figures are mind boggling. It certainly makes me wonder who 'should' pay for all his care (again, we don't have a good system to handle these costs).

 

[Kimmio Laughterlove]

Kimmio -I doubt any of us know what would make us become a whiner. I certainly wasn't saying that you, personally, were under attack when I wrote my words. It still seems to me that supports are necessary, but we just don't have a handle on the best way to provide them. People fall through the cracks. People take advantage. I don't know how to fix this.

DaisyJane - I appreciate your honesty about the costs of raising Matthew. The figures are mind boggling. It certainly makes me wonder who 'should' pay for all his care (again, we don't have a good system to handle these costs).

Well, legally (as per human rights law people with disabilities own voice need to be part of the process) the government is supposed to have consultations with PWDs themselves about concerns gaps in the system - what works what doesn't, that they feel they need. I came across one recently - a transcript of one I think I posted somewhere - the needs are wide and varied but a common thread was respect and acceptance and not treated second class. I really don't think the majority of PWDs take advantage. I think if anything actually put up with 'second class' ill treatment in society compared to the level of 'hand-outs' and there are still gaps in need. Which would be my bias of course. Housing is another gap. The average 1 bedroom apt costs about $1100 or more per month. Disability cheques are about $900 now - so, rooming house is all that pays for. Jobs are not so easy to get, especially for PWDs. So to live with dignity is a need and a human right - I empathize that it's hard and not their fault.

 

[DaisyJane]

Kimmio -I doubt any of us know what would make us become a whiner. I certainly wasn't saying that you, personally, were under attack when I wrote my words. It still seems to me that supports are necessary, but we just don't have a handle on the best way to provide them. People fall through the cracks. People take advantage. I don't know how to fix this.

DaisyJane - I appreciate your honesty about the costs of raising Matthew. The figures are mind boggling. It certainly makes me wonder who 'should' pay for all his care (again, we don't have a good system to handle these costs).

The issue of who should pay for costs associated with raising profoundly disabled kids is a good question. Most parents are very comfortable with the idea that they are responsible for raising their kids. But, most parents with severely disabled children simply cannot bear the associated costs alone and need help. Add to that the fact that we know that in most situations with very complex kids one parent is forced to leave the work force, or radically re-structure how they work, and you've got radically elevated costs and reduced income. The research is very clear about the challenges of raising complicated kids and financial stressors loom large. Kimmio's point that these financial stressors can then cloud other experiences is a fair point in my opinion. So, for example, we know that financial stress can, at times, exacerbate marital stress. Throw in exhaustion, isolation, and burnout and you've got a toxic mix for parents with potential problems for the entire family if things don't go well.

Often funding available to parents comes from multiple funding silos and requires significant organization and hoop jumping. At times the process can be dehumanizing and even humiliating. Parents are required to lay bare their finances and can be reviewed with impunity. I find the process takes a lot of effort and organization and I am a parent comfortable with the health care system, who is well-educated, fairly affluent, and who is fluent in English. Think of the experience of perhaps a new Canadian who may not speak English well, or of say, a poor, teenaged mom.

Most parents feel that the system requires restructuring and admit they need more help.

 

[Lastpointe]

I agree that it is so difficult for people who dont have a great grasp of english.

As a side note, one of my nieces is a special ed teacher in brampton. Over the past 20 or so years brampton has grown amazingly and is now more than half east asian i believe. She is a team leader for her school and they have many chdren of immigrants.

Limited english, limited finances. She was devasted one year when the family decided her teaching of their son with autism was not going well because she just wasnt strict. They sent him home to india to live with his grandparents and learn "better". She just couldn't convince them, that he had special issues and needed help, not a whip

Other families she spends time with helping them access the system.

There is no question that like speaking english or french is a big help

I can only imagine the hoops you jump through to access government services. No matter how much any government tinkers with systems . They seem impossible to understand. I find government web sites so odd to use


And i know from friends and family with a child with downs syndrome , another issue is legacy. Who takes charge, where does the money come from for continued support after the death of parents. For our family it is a big worry though they have managed their wills to ensure ongoing support

 

[Justme]

I had a committee meeting with CMHA today. One of the gentlemen there turns 65 in April. He is well spoken and helps facilitate groups at CMHA but cannot figure out the 25 pages that he must complete to get CPP in April and his disability benefits will be cut in April because he turns 65 - no area for compassion (i.e. when you get your CPP you can pay us back or whatever). He is so panicked. Thankfully a worker who was at our meeting heard him and is going to meet with him later this week to fill it out.

My best friend's step son is in his early 20s. He is cognitively delayed and has serious mental health issues - he gets little support. He was violent at home but all they could be told was that he was at the top of the list from the time he was 16 (he is 23 now). He still was not placed but a private place opened nearby and he's gone there but the responsibilities for his care still fall to my friend and her husband like getting his medications and filling out really cumbersome paperwork each month to show what he has earned (he has a small part-time job and the disability people keep losing his pay stubs when they are submitted so they have to submit them in duplicate with an explanation with every page marked with excruciating details).

Really the only option is to have the public trustee to take over but that is a miserable option from what I have seen. The system needs help but it is working so hard to just get people to survive it doesn't really have the energy to fight for changes. And there is no political will for a massive review and overhaul.

 

[Kimmio Laughterlove]

In our house two of us have disabilities but my husbands epilepsy is not visible-it is serious. It can be a stressor and lead to missed work time too - most recently indirectly led to serious aspiration pneumonia that he needed to be hospitalized for. but he was told in the past he does not qualify for any help of any kind and he is a little proud to ask for help anyway. Our future worries me so I try not worry too far ahead. So you never know what everyone is dealing with.

 

[Luce NDs]

Kimmio, you mentioned a man, perhaps friend, i have forgotten, who wants to teach but cant get work after a year with an emplyment agency.

Sadly, he will join the tens of thousands of underemployed or unemployed teachers. People need to stop going to teachers colleges until they figure out the need and how to get retired teachers to stop teaching and open up the jobs to young grads. I doubt he will find work as a teacher any time soon. I know many kids trying to get jobs.

Getting a professional job is hard now. My, wi a masters, did free internships for two years while he worked with a job search team trying to find employed work. It is not easy. He kept reading reports how the boomers were starting to retire and there wasgoing to be the big opportunity. His response. " so retire already..."

I was laid off at 55 while some of the well to do upper management worked on into their 80's an almost cryptic, sentience, being some of these ancients couldn't deal with institutional solutions to problems that hadn't worked for 50 years.

Thus my philosophy: if you can't continue with the irrational ... just act a bit ridiculous ... village idi OEm?

 

[Beloved]

I don't have the stats, but from my own observances I can imagine some of the problems people face when living with disability.

Many of them seem to live in poverty - a large percentage of the people who come to the church where I volunteer have health problems severe enough that they are unable to work.
At the same time their expenses may be higher

I agree seeler . . . my daughter receives assistance from the government as a person who is living with a disability, and she works part time at our public library. While (with both incomes) she makes enough to sustain her daily living (even with the losses she incurs because of her working income compared to her disability entitlement). But that is it. We are in a position where we are able to help her financially. For example - her glasses (because of her vision issues) are way more expensive than a regular pair of glasses, and the amount she is allotted through Family Services comes no where near the cost. Another example - she has to go to the city for medical appointments at least once a year - we are able to take her and pay the costs. And we travel cheap. But the amount that is reimbursed by the northern patient transport program does not even cover 1/4 of the overall cost.

They may need aids for mobility, for reaching, for personal care (a friend with Parkinsons has support bars installed all around his home so he can reach from one to another to get from the bed to the bathroom, livingroom, kitchen)
They may need a personal attendant for a few hours or full time
Buildings that should be accessible are not always so - ramps are poorly designed or placed, or not cleaned off after storms. Doors are hard to open. Elevators are not always available. Not enough bathrooms have hand rails to assist with support. (I ran into this problem at our newly built Y when a woman in a wheelchair reprimanded me for using the only handicapped shower stall.)
They may need a three-wheeled bicycle for recreation or transportation

Our daughter's biggest challenge is mobility - and when sidewalks and roads are in poort shape, or steps without railings into building, or doors that are too heavy to open, etc. etc. - this limits places she can go without assistance.

Her apartment (she is very blessed with what she does have) is in the basement of the building with 3 steps to access that. She would do better if she was on the second floor, but because there is no elevator, that is impossible for her.

There are probably ways that other people can be sensitive to their needs, comfort, and happiness - like talking to them directly rather than to their companion (this happens with old people too); or sitting down to talk to a person in a wheelchair so that she doesn't have to look up all the time. Being patient when they require a little extra time. Holding doors. Including them in conversations, inviting them to events, offering transportation, carrying a bowl of soup (a big help to me at church luncheons). Asking their opinion. Asking for their help. (A blind man has recently taken over one of the positions on our church council.)

There have been people who ignore her, or will wait until someone else is available (at work). There are people who talk loud to her, because they think she cannot understand. (She will quite often ask after - "do they think I am deaf"?) But the blessing is that because of her personality, those that get to know her love her, and there are some at the library who go right to her, because they know how hard working and helpful she is.

This is a thread for people to share what it is like to live with disability and how others can help - including advocacy. (My church is pushing for better public transportation in this city - perhaps because one person living with a disability keeps bringing it to our attention.)

We have been advocates for out daughter since her neurological disability presented itself when she was about 3 and 1/2 - all through school, within the medical system, within society and the programs available, and in her work place. Most of our experiences have been good, but there have been some that have been very challenging. And we have been blessed to be able to help her throughout her life to improve her quality of life and her care. Our greatest concern is for when the time comes that we are not able to do these for her and to relinquish this responsiblity to others.

 

[Lastpointe]

I think that is a fear for all parents. Who will take on the fight when we are not here

 

[Seeler]

Beloved, thanks for the detailed explaanation from 'one who's been there'.

 

[Justme]

The speaking loudly thing is an interesting situation - my Mother's family are all very hard of hearing (my Mom has about 15% of her hearing when she has her hearing aid in and all of her first cousins (almost 40 of them) wear hearing aids) so I always assumed that older people were hard of hearing so I always raised my voice. My Uncle's mother in law was blind and elderly so I spoke loudly to her - she was also very cranky. I was helping her out of a vehicle once and she said to me - I am blind not deaf!

My brother's in-laws speak no English and my Father spoke no French or Portugese. My Father when we would have dinners together would speak super loudly to the Father - we kept saying to him - he's not deaf, he doesn't speak English.

A friend who is my age lost her hearing suddenly in her second year of university. She said that if people saw her hearing aid they would speak louder and would ennunciate with vigour and often gesture wildly. I knew this. One day her hearing aid broke and apparently I started to do exactly that even though I knew that it wasn't necessary and she didn't like it - it was an unconscious response.

I try very hard not to over compensate for this but it's a really interesting phenomenon in my opinion. I'm still not really understanding what I "learned" in my disability training about not offering assistance to someone but waiting until they ask. I would never speak to the companion instead of the person but it just feels rude to me not to offer to get something for someone in a wheelchair.

I'm glad your daughter has such a great job and that she enjoys it!

 

[Pinga]

A gentleman got into the van last night. He was the 3rd person to arrive. The first person took the middle row, I took the front row, leaving the back row open. I know the back row is tough to get into and would offer to move if I saw a senior, or a person with a baby . He was walking with a cane with some mobility issues. I said "would you like this row, I can move back". He said "I'm probably last off, so it is fine". Easily asked, easily answered.

 

[Beloved]

I think asking is a very wise approach in many situations . . . sometimes we can assume things, and sometimes when we assume, we assume wrong .

Yes, Justme, my daugher is so blessed (in so many ways) but especially in her work situation. The people she works with are so good to her. It is a safe environment for her. Given enough training she can learn to do so many tasks. She loves people, and most people love her. She is so lucky.