Don't qualify for Disability

[Jody]

I applied last year for 2 types of disablity. One was provincial, the Ontario Disability Support Program, the other was federal, Canada Pension Disability.

I sent in the paperwork and was told I didn't qualify. I had no medical documents to prove I was sick.

I also can't get Welfare because I have 2 daughters who live with me who are working, and the amount they make would come off the cheque. And my son and husband, who are also unable to work, but have no medical proof, would have to go out to work, for us to qualify.

None of which makes any sense to me.

So we go to the Food Bank in town, who don't question that we need the help (a relief after dealing with gov't agencies). We get a bit of help from family members, I have recently started doing a bit of copywriting work for pay. And I pray a lot.

 

[ree4tu]

I am sorry to hear you did not get disability. I just applied and live in the U.S. I have a lot of medical records stating I am very sick including ER and Hospital records, but I will probably get denied anyway as most people do the first time. Then I will have to appeal or get an attorney involved. Not a fun process when you are sick and need help.

 

[Cort]

You will get denied at first: look forward to it - accept it as if it's already happened. That's the sense I've gotten from reading around. The judge is the key - the human face - if you have good records I'll bet you have a good chance.

Be sure to check out Disinissues - I hear they have a pretty good chat group with lots of experience.

(And, of course, the new Disability section on Phoenix Rising)a

Good luck!

 

[Jody]

I am fortunate to be getting healthy because I know full well I will never qualify.

No medical tests to confirm anything.

They are suspicious of everyone, even the people who do have medical proof. To them I am just another lazy, stupid, lying con artist trying to find an "easy" way to live off the government.

My husband went through this after his work accidents (2 of them) years ago. He had all kinds of proof that he was injured and disabled and they eventually just dumped him.

I've had a bellyful of dealing with bureaucrats who don't give a damn about me and mine. I can put my energies into getting well or getting them to help me and the choice is clear for me.

For those who can receive gov't assistance, I think that is wonderful.

But it's off the list for me. Al and I will find ways to take care of ourselves and our kids. There's really no other option.

 

[kurt]

be persistent

I am sorry to hear you did not get disability. I just applied and live in the U.S. I have a lot of medical records stating I am very sick including ER and Hospital records, but I will probably get denied anyway as most people do the first time. Then I will have to appeal or get an attorney involved. Not a fun process when you are sick and need help.

Yes, you will almost certainly get denied the first time, I spent two years getting SSDI, and I was very well qualified but there was no way to prove that. I did NOT use a lawyer as I have a little business law background and had learned that lawyers can make things harder many times in poorly funded situations like applying for disability (they can't make much). But I would not recommend my route for everyone. Anyway, what worked for me was a lot of persistence, documenting the SSA legal requirements for disability for CFS and stating how I qualified (the Judges do not always stay current), presenting a large stack of medical records including an MD who clearly stated that there was evidence I was sick and disabled by CFS, and clearly documenting my inability to work, what I was and was not capable of. I also had to battle a crazy SSA doctor who said I was fine and could work after a 20 minute physical exam ('yup, he can move his arms and legs so he can work'), so I had to educate the judge about post-exertion malaise and energy windows (I sent a 10 page letter with references with my appeal to the judge). Also, I think prayer helped. Honestly, getting SSDI for CFS takes a small miracle, but it CAN happen. My family would be destitute and homeless had I not won my case, I worked with all my available time and energy on this for two years, studied every angle, etc. And ultimately it came down to my face to face meeting with the Administrative Judge. I had to recline in court, keep my feet up, etc., and needed breaks from all the talking a few times. Traveling to the courthouse was the longest trip I had taken in 5 years due to my weak condition. And my wife was crying in the courtroom because she knew what could happen, we were about to lose our house, could not make it, and had children in school, etc. We were on food stamps, getting help from charities, had tapped out family for all they were willing to give for a mystery disability, etc. The judge had mercy. It could have gone either way. Never give up because you don't know how it will end and things can sometimes go your way. And the real irony is that through all this I was trying continually to get well so I could go back to work, and I am still trying. And everyone I know with CFS is the same, I have never met a malingerer with CFS. But the social mind-set is so strong, this is just a battle we have to face down to get the disability we deserve. So expect a fight and don't quit trying. Good luck with your case!

 

[Jody]

Hi Kurt

Welcome to the forums.

I am very glad you got your disability approved. I can picture what awaited you if it hadn't been.

I am in Canada so in a different system than yours but I think there are plenty of similarities between the two. Like for instance, the affront of how ill people are mistreated and pushed aside by the institutions that are supposed to be there for people who are vulnerable and ill.

For so many, not qualifying for Disability is disastrous. And there isn't a safety net for people who fall through that safety net. It is a truly shocking state of affairs, not just for those of us with cfs, but for all people legitimately in need.

 

[Angel]

Disability

The key in the USA is to keep appealing every time you are denied. That is the way the system works.

Some judges are very knowledgeable about FMS and Chronic Fatigue. They've been educated too, as the years go by, and some of them have family members that have it, so they know what you are dealing with.

Don't give up hope.

 

[Jody]

Cort told me to post my new articles here on the forums, so I am just doing what I am told.

Tonight I posted two new articles on Ncubator, one of them is called "No Disability for Jody"
http://www.ncubator.ca/No_Disability.html

There are so many of us in a similar situation, it needed to be written about.

That link takes you to the article, or you can find it at the bottom of my homepage (see my signature below).

 

[Zona]

getting disability and not

I applied last year for 2 types of disablity. One was provincial, the Ontario Disability Support Program, the other was federal, Canada Pension Disability.

I sent in the paperwork and was told I didn't qualify. I had no medical documents to prove I was sick.

My husband got ill in 1989 and should have gotten private disability at that time except for a boss who pulled a fast one (long story). After trying to go back to work several times he ended up having to get provincial help- they didn't call it disability back then it seems. Then for years it was "temporary disability" until the gover't reclassified everything and set up a new program which was about the time I came here. Then they made another one a few years later which he had to re qualify for.

I inquired and found out that he had been eligible for CPPd, however way back then a worker at CPP gave him incorrect info. She told him to go to the province for help. Due to that I found he could apply retroactively which we did. However I was informed by several advocacies that it would NEVER get approved. Two strikes against him, the length of time passed and his diagnoses - CFS and FM. (by the time he applied he also added MCS along with the other things like IBS).

I read all I could before filling out those forms. (we had to apply for both at the same time due to the province redoing their system at same time). Because it is too emotional of an ordeal to have to go back and rehash all those old memories he had me do it for him. I had a few old Dr.'s records to go by and add in. Thing is first Dr had died, the second left the country. Who knew what happened to the third? The fourth was a jerk and not very helpful, and he had just gotten the new Dr. Most records were missing.

I made a list of all the things that they look at as daily living activities then wrote it up using that list and illustrating how symptoms made them difficult to do etc. I did the same for the provincial form which is about 20 pages long. The one section is for the dr to fill out. I never figure the dr really understands what needs to go there. I know for SSDI/SSI they never did and would understate things. So I took each question under the drs section and typed out answers that fit each one. When we gave the form to the dr we included those saying it was just to help him remember things dh had told him etc. He dang near just copied what we wrote btw.

Of course they turned him down twice (for CPP) and he had to go to the tribunal. I submitted a bound detailed thing with appendexes of med records etc which they made a copy of for each tribunal member...ie they had them when we got there. We highlighted parts of dh's copy so when they asked him questions he'd be able to remember things. I had it all cross referenced. The provincial form we just sent in. My husband got CPPd in 2003 and got PWD status for provincial disability. He later dropped the provincial disability because I didn't have pwd status too (had to).

I also can't get Welfare because I have 2 daughters who live with me who are working, and the amount they make would come off the cheque. And my son and husband, who are also unable to work, but have no medical proof, would have to go out to work, for us to qualify.

None of which makes any sense to me.

That was similar to our problem too. They expected me to work since I didn't have PWD status (person with disability) and couldn't get it at the time (I was disabled mind you but). Then too I had a daughter who got child support which they wanted to take from her... and later she had a part time job. .... So dh couldn't get provincial disability either...

So we go to the Food Bank in town, who don't question that we need the help (a relief after dealing with gov't agencies). We get a bit of help from family members, I have recently started doing a bit of copywriting work for pay. And I pray a lot.

I have too many food allergies to benefit from a food bank. I've also heard that they will only let you go once a month here...

I had been trying to do some work from home with dh helping. Found that I just can't do enough to pay for necessary things like rent and utilities. So recently we had to go get some emergency help and I'm going to have to apply for PWD status myself.

Now here's the problem. I'm like you. While the drs here wouldn't really recognize CFS or MCS as real illnesses - dh's first dr was the only one who did and he died - they did at least know about FMS. They don't always get that FMS IS disabling though and not something that can be helped by a bit of exercise! He had 18 yrs of drs and records. Though I've been sick longer than he has I don't have any med records here. Heck I don't even have my own dr here as none are taking new patients. I have to go to walk in clinic. I don't go for any of these illnesses as I can't take meds (I react to them /allergic to some) and they can't do anything to help me with those anyway. I've only gone for things like to get dx'd with eczema when i got that the first time, twisted ankles and a bout of heart skipping that lasted for three straight days. My records say i have cfs, fm and mcs because I put them on the form you fill out at drs office, but who knows how much credence a dr here will give to that, even tho they actually are previous dx's by drs? Unless the dr will not only agree to put that in writing without tons of tests that won't show a thing AND do so in such a way to show I can't take care of my basic living needs myself (which is true) then I'm toast as far as getting anything. I don't know how the heck we will manage if he won't----

I'm finding that writing my own is much harder that it was to write his up. It's having to think about all those years of being ill in detail and how it changed my life. That is draining...

I don't cherish the idea of being in the system...

 

[Zona]

similarities USA & Canada

There's a lot of similarities in attitudes etc between getting US and Can disability assistance.

The ones you paid into: Canada Pension Disability ----- Social Security Dis.

those it doesn't matter how much you own or if you spouse works etc. Once you have it, you have it. They treat you better than if you have the other kind.

The ones you have to be under a certain income level to qualify for:

Provincial Disability (called diff names) ------ SSI (through the state)

Here people refer to this as "welfare disability" because they make you jump through the almost the same hoops as you do for welfare pretty much, with almost the same attitudes from others if they know you get it.

Although the reason you need these is because you are unable to earn a living they really aren't based on inability to work. To get them, SSDI, SSI, CPP, provincial, you have to show that you are unable to take care of your basic needs, ie walking, sitting, talking, cooking, shopping, paying bills, showering etc. That is ridiculous but that's how it is. I think that is the main reason so many claims with our type of illnesses get rejected. The dr's don't quite realize that and don't write up reports that way.

My son in the US applied for SSI based on CFS and FM. BTW Cort is right you rarely ever get approved until you go to the judge (turned down 2x first.) Same here but you go to a tribunal. He was a young guy in his twenties at the time and the judge told him that even though he saw from his records that he was ill SS didn't see FM as a disabling thing. Ya right! I knew other people in the same city who did get SSI for FM...but they were older women not young guys.

I know two people who got SSI the first try. But one is autistic and the other is a woman who is bi-polar and has CFS. She got it mainly on the bi-polar dx. I should say she had it until her husband made $10 over the limit and they bumped her off. She's applied again but this time they turned her down the first time. Oh and I knew another gal with CFS, FM and bi-polar who also got SSI but again mainly because of the mental dx.

Another big problem as I see it is that even if one can get SSI or provincial disability the amounts are so low one can't even pay for basic necessities with it. Rent and utilities alone add up to more than they give you. AND you're not supposed to have any other income. However here now you're supposably able to get up to $500 a month before they subtract it from your allotment though I know most people are afraid if they did get some regularly they would suddenly figure they aren't really that disabled and push them off to work full time <sigh>. With SSI they subtract child support from what you're entitled to get. So it might help but it doesn't solve our finacial problems and it certainly won't pay for the extra stuff we need like alternative health treatment, suppliments etc. Bottom line is that you are never really independent...

 

[Lisa]

Hello Folks

I have very little notion of how the medical system is run up there in Canada so this may not help, but I wanted to share a bit of my SSI story in case it did.

Jeremy and I both had to go to the Judge stage to receive it after having been through the usual denials. We had a specialized social security disability attorney whom we hired when the next stage would be the court. He was very good and very caring. He was also the only one in the phone book who would accept cases with CFS/MCS.

He charged based on if he won and took a percent of our back payment. It was very worthwhile. Every couple weeks we seemed to get copies from him of the letters he was sending around to our various doctors and asking them for the exact type of information that was needed. I highly suspect the doctors listened to his attorney letterhead more than they would have listened to us.

It also allowed us to relax as much a possible about the process and focus instead on finding the couple of doctors who would be of use - as opposed to the often useless ones unless you had a sniffle.

We had a huge amount of trouble with all doctors who were not specialists, largely due to the interference of our DSHS (dept of social and health services) case worker. Seems she would call every non-specialist doctor or phycologist who was to do an eval for our state disability benefits through DSHS and she would tell them that all our previous doctors said we were malingering. Then she would also lie in our official DSHS records saying that the doctors had called her to say we were malingering.

We even had proof of her lies, they were that prevalent and obvious. But none of our proof would matter for DSHS because they back up their own kind. So all these various regular doctors and psycologists we had to see for evaluations with DSHS were killing any chance we had at SSI/SSD simply because through her lies and manipulations we were getting it in records that we were malingering even though at the time we were being evaluated they doctors would tell us they believed us. blah.

What saved us was a handful of evaluations from specialists that we sometimes paid for from our own pockets instead of who DSHS wanted us to see and would pay for. Each and every specialist we have seen have all said that we have either CFS, MCS, or PTSD based on where their specialty lies.

Without these few reports from actually well trained doctors, our attourney who was able to solicit exactly the right information from them for reports to social security and keep all the paperwork filled our right for us, and some amazing luck that DSHS had forgetton to file with social security some of their most damning evaluations (thank goodness) - we would never have gotten approved.

I don't know how things go up there north of the border, but perhaps if you could locate a compassionate attorney to help with the process and get to see some specialists maybe the luck factor will help bring things about.

This also seems like a good place to add that Jeremy and I would be married years ago but one kind case worker we had briefly at DSHS told us never to get married unless we were well. Otherwise too much money is deducted from what you might be eligible for from SSD/SSI and state disability. It makes a difference of several hundred dollars for us and is pretty much how we afford our supplements and some extra vegies each month. Course, this doesn't help most here already married, but maybe someone going for disability payments will read this and have someone they want to marry and find out the sad, but useful way of increasing your income.

I would love to marry this man but instead have to use that impetus as another reason to become well.

Lisa

 

[Jody]

There's a lot of similarities in attitudes etc between getting US and Can disability assistance ... it might help but it doesn't solve our finacial problems and it certainly won't pay for the extra stuff we need like alternative health treatment, suppliments etc. Bottom line is that you are never really independent...

Zona,

Your post summed things up really well.

IF I'd qualified for the provincial program ODSP, my husband and son would have had to go to work (unless all three of us could prove disability -- the triple whammy), and everything our daughters earned would have been deducted from our monthly cheque. That includes their OSAP loans for school. (That's giving kids incentive to better themselves, isn't it.)

I don't know what the amount would have been for us on ODSP, supposedly higher than it would have been on Welfare (which we didn't qualify for for the same reasons as ODSP). On Welfare for a family of 5, the maximum is $1100 a month. And you can't earn anything over that, they deduct it and your benefits from them could end up in jeoparday without warning.

For those in a different economy, $1100 a month would pay our utilities and bills, but not buy food or any health treatments and supplements. Or it would take care of the food and health stuff but not cover bills. So people routinely end up having to do stuff under the table and lie, to survive.

A charming setup.

I have managed better these last 20 years praying for what I need. That is what I have chosen to continue doing. Not really much of a choice in my opinion but I have done better depending on the Unseen than on the government.

 

[Jody]

One thing I will grant to the Canadian government.

We had what used to be called a Baby Bonus which was money everyone with kids got every month just for having had kids, more money depending on how many children, till the child turned 18.

Now it's the Child Tax Benefit, basically the same arrangement, only it would be a higher amount for low-income parents. They worked this out just from tax returns so there was no application necessary to get it.

At its highest we were getting about $800 a month for a number of years when the kids were small and it basically saved our necks for many years. Then the little blighters started turning 18 on us, and the amount started dropping, until a year ago when Jesse turned 18 and it disappeared entirely.

I think there's also a new one that's been added to the CTB, but it started the month before Jesse turned 18, so we only got it once.

Another thing that has helped a bit is the GST, a quarterly cheque sent out to I guess everyone, it was also higher for low income families, and higher for people with kids under 19. Ours has of course again shrunk as our kids grew up but it's still an extra $120 every 3 months and that helps.

So, thank you Canada for these things at least. Because your safety net (ODSP and Welfare) sucks.

 

[Jody]

Lisa,

I am so glad that the benefits thing worked out for you two.

You have enough else to contend with without having to worry where every penny will come from.

And as to being married or not married to Jeremy, if you two are happy with your relationship and this is the best way to handle the present financial situation you are dealing with, then fantastic.

I don't care if you ever get married. I am just glad you have each other to lean on and to help each other through.

 

[MEKoan]

Jody,

I am on ODSP for ME. Given that it's a diagnosis of exclusion, no supporting tests are possible. Also, the Canadian Case Definintion makes the potentially disabling nature of ME clear. It is essential that your doc be aware of the definition and list the symptoms you have which are included on the definition in your application. Perhaps your doc. did not understand the diagnostic criteria.

A couple of years after being accepted, I recieved a letter saying my disability was considered permanent. I felt a strange mix of relief and despair.

I receive 454.00 for shelter (it's actually $700 before util.s) and 566.00 for basic needs. If you are able to do a little work, 50% of the amount you make is witheld from your cheque until you reach a point where you are on your own. If you do not pay rent, you do not recieve that portion.

I'm pretty sure (not certain) you could pay your mtg. with the shelter part but, if you do not pay rent/mtg., you do not receive this part of the benefit.

It's complicated for you now as you're recovering. (Fingers crossed for that!) Let's all just recover and leave all of this behind us!

All the best to you,
Koan

 

[Jody]

Koan,

Thanks for thinking of me.

I would not get that portion for rent or mortgage as my dad holds my mortgage and has not gotten any payments from us for 10 yrs or so but understands the situation and can afford to wait ... indefinitely.

Another complication I'd run into is that not living alone, any money made by my daughter would be deducted from the monthly cheque. And so would her OSAP loan for school.

And also not re: not living alone my husband has FM and my son has CFS. None of us have corobborating evidence of these conditions and I can't imagine them finding in favour of all 3 of us. They would be required to go to work which is impossible.

All these things would also be in the way of qualifying for welfare by the way.

If ODSP also deducts half of what I earn, it would not leave much money a month.

I think my best bet, since I am recovering and am beginning to find some income, is to steer clear of that frustration of dealing with the govt and just try to build a life.

I am glad for you though that you are receiving benefits. You need to be able to concentrate on healing, and not on scratching out enough to keep a roof over your head. Your benefits are not alot of money but if they will pay for your nest and some food you are ahead of the game for now.

Pace and rest ... pace and rest ... pace and rest ...

 

[MEKoan]

Yes, Jody, it did seem complicated in your case.

I'm also a big believer in doing what feels right in your innards. I get the feeling that you know what you're about and that you are doing exactly what is right for you and yours.

You are on your way and it could feel like a step into defeat if it's not what you need. It's good for me right now.

Holding a good thought for you on this leg of your journey!

 

[Jody]

Thank you Koan, for the vote of confidence.

Sometimes I feel sure of myself and sometimes, not so much. So those words are nice to hear.

I am hoping for your eventual healing and for safety, comfort and peace in the meantime.