Current forms and checklists for disability

I'm probably asking for something that already exists in a thread somewhere but can't find what I'm looking for and I can't figure out the terms to search for it.

I'm trying to find current/recent forms and checklists for disability. I am in the process of filling out paperwork for some recognition of my disability status but the standard form uses specific questions that don't really apply, such as being unable to walk, eat, speak, etc. Which is kind of my case but, you know, not quite binary.

I know the ME/CFS clinician coalition out out material recently, including some for health care providers, but I can't seem to find something like this. Ideally it would have to be neutral, i.e. not specific to a country. Ideally available in French, but not a must-have.

Basically something that details the nature of the disability in a way that disability assessment can use and understand dealing with functional disability. As a form or checklist, and preferably authoritative, eminence and all that.

 

Is there a box where you can describe the nature of your disability? Can you attach a written letter describing it?

 

A lot depends on whether the system recognises that the negative effects of doing something can be so severe as to mean that you effectively can't do it.

In theory at least, the UK system does: e.g., I can't walk 20 metres repeatedly, reliably, and as often as I need to without triggering PEM and being at risk of injury from falls, so I'm treated as if I can't walk the distance.

Obviously, this is a really crucial point for ME patients.

 

There is, basically asking for additional information if relevant when the standard questions aren't applicable. It's a bit too small to include all that is relevant, so my GP suggested a form that she had in mind but couldn't remember which one she had used for another patient.

I'm just hoping to find one made explicitly for that recently, with the relevant questions and framing. There are information sheets for physicians available, including recently from the ME physicians coalitions, but forms with relevant issue to describe the disability and limitations, specifically for disability assessment, I only vaguely know some exist but don't remember any specific one.

I especially love that the severe brain fog and memory problems making me unable to work are also making me unable to find what I need to show it. Now that's living irony.

 

It's a hope for the best kind of thing. It's not as rigid here as what I heard from the DWP process in the UK. Worse case it would be described as best as possible but I'm sure someone has published something like that somewhere.

In other ironies, I programmed so many forms and data entry UIs. So, so many forms, it was a core specialty in my work. Now I can barely use one, let alone find the one I need.

 

here in the uk you can add some pages yourself explaining how your health affects your ability to function . just make sure each point is linked to the question number . and staple it to the form it is quite remarkable that the dwp manages to lose paperwork on a regular basis . in England everyone sends thier paperwork by recorded delivery but guess what even though i had the name of the person who signed for said paperwork they still managed to misplace it photo copies of doctors notes or other documents are a necessity .

 

I have gone through the process 6 or 7 times now since being sacked after three months away from teaching by my fell running newly appointed 32 year head teacher who preferred to start her post with her appointments. The DWP are quite clear that a diagnosis or symptoms are inadequate "how it affects you" is their mantra. For over twenty years I never had an injection for any dental work fearing a relapse. I acquired a tolerance for pain. Is this a good thing? My last 7 months I have endured the most vilest of pains in my ear,neck,head together with the sore throat etc. A&E state this is chronic pain therefore a GP has to deal with it. No GP has ever treated me for ME since 1987 after St Bartholomew's Hospital diagnosed the condition (Dr Kirby's Clinic) on the 6th Floor - no lift ....Shared with the HIV clinic so HUGE sound system playing loud music for that cohort, others had to cope.
What I'm trying to state is that despite being relatively un-phased by paperwork, pain and a facility to interact with reviewers, I truly struggle to explain adequately for DWP 'Decision Makers' how the condition fluctuates, insults and ruins life as it is lived. Most folk reading this KNOW how ME feels. DWP staff read the word 'fatigue' 'headache' 'malaise' and relate that (I might argue) to their Saturday morning after a heavy Friday night or Sunday after a run or a kick around in a sport the day before. Their comprehension is limited by their inexperience of poor health. Politicians regularly pull the stunt of living on welfare for a week. Sure they can arrive well nourished, cope with 5 days on rations knowing they can go home at the weekend. ME patients cannot get up on Saturday and walk away to the rest of their life. No one is congratulating us for saving the country money by not using the healthcare system. We have no choices and we need a language to convey this to everyone who judges our needs and capabilities. I end up, like here, using too many words. I suspect the submissions are not read, and 'gut feeling' kicks in "shirker" he can walk , he can't be bothered. And so our personal endeavours fail because we do not have a unified code to supply to reviewers which precisely delivers unassailable descriptors in a cogent way.

 

Basically, as others from.the UK have said, I add my own information.

I hope you find the form you're hunting for @rvallee. In the meantime if it's any help....

Here's the thing about forms in my opinion. They can both guide you to give the relevant information while at the same time restrict the information you can give by the way they word the question, the amount of space in boxes etc.

So, I answer the question as I would if I tried to be up and dressed and attempting to do the activity everyday. How would I feel? That's the box I tick. Then in the addition information box I put I suffer from a fluctuating condition amd I ticked this box because see page x of included notes.

I include page numbered notes with clear question headers and I put as much information as I like and what I feel is relevant, even if that means chucking in the kitchen sink and all.

So, for example, I cannot press numbers on as on a telephone style keypad because....

I include everything from clumsiness due to ME, pain caused by repetitive action, PEM, issues with being upright for any length of time, memory problems (I read a number but as soon as I look away I tend to forget it) etc.

It's a huge task but once it's typed in you can reuse it at the next review.

I treat every question as the it's a stand alone question, so there's an awful lot of repetition but it means they can't ignore any of the information and it ensures I get the max points I should for each question.

Edit spelling

 

Also, it's important to include 'permanently disabled'.

Yes, same in Canada.

 

I wish I could help, but all I can think of is this website. It's mostly about how to get social security in USA, but maybe something on this website will also be applicable to the process you have to go through in Canada.

https://howtogeton.wordpress.com/social-security-disability/
https://howtogeton.wordpress.com/how-to-collect-support-documentation-while-applying-for-disability/

Edit: I found this link that I had bookmarked which is also about the social security process in the USA.

https://www.frontiersin.org/articles/10.3389/fped.2019.00231/full

 

I think the HowToGetOn blog probably has what I'm looking for. Otherwise I can't find much.

Thanks! I had this one in mind vaguely but couldn't remember what I was trying to remember... amnesiaception.

 

Hi @rvallee

Don't know if you've already checked the ME & CFS Canada FB group? There are a number of docs on disability applications in the files section and lots of discussions & tips if you search the group.

Also several meeps in my family have experience applying to DTC and CPPD. If you'd like specific input into either of these just send me a message?

Hope your application goes well. We need all the help we can get.

 

Ah, I don't use Facebook. Mostly for the best but I do miss out on a bit of stuff like that.

This is for the DTC so I guess I'm in luck. I'll send you a DM. Thanks!