Just a little rant and ramble

[JW77]

Have sent off my renewal for DLA..  Yes, as though they expect me to grow kidneys, become a top international footballer and suddenly not need dialysis. Not suffer from depression, agonising needle pain, and odd aches and pains that come and go for now apparent reason at random times during the day!

To fill in one of these forms, including cross referencing, compiling supportive data, filling in a draft copy, and including the bits in extra info that they've now left off of the new forms, takes weeks.

I think if I didn't have the support of my parents, I would probably be rotting in a council bedsit, with barely any money, and waiting on appeals and claims while the bills built up.

Of course I can't actually fill in a form, steal syndrome in my fistula, writing arm, gives me cramp after 2 or so pages, so my father does the form filling for me.  And oh joy, PIP will be rolled out, so it will the 'Invitation to apply in October' 2015.. Another form, another few weeks of stress and swearing.

Hope everyones enjoying the sunshine:)

 

[Angiepkd]

Filling out forms is the worst!  Add to that the survey I get in the mail after every Doctors appt or hospital visit.  Screwing up the billing for my insurance is also a huge pain.  Sorry you are dealing with this.  Hope it all goes through with no problems!

[kristina]

I had a look at one of these forms and it made me feel very inadequate ... and I thought I would need at least a PHD
if not a university-professorship in the "art of analyzing" to comprehend correctly what it could possibly mean ...
... it was all written in a "gobbledeegook-language" and I had no idea what it was all about...
... I congratulate anyone who is able to interpret correctly what it could possibly mean...
and I can't imagine what unwell people have to go through when they try to fill in such forms...
I wish you all the best and good luck, Kristina.

[Charlie B53]

Bearureaucratic paperwork is insane.  Almost like some politician attempting to justify his position by clouding the issue so well that everyone cannot make sense. 

but color me stupid, I haven't the slightest what DLA is.  Some sort of application?  I applied for Social Security in '08, long before I started PD in '13.  I was in the hospital for two weeks with a fat bright red leg and my kidneys had (temporarily) almost quit.  The Dr's told me I HAD TO quit work, stay home and OFF my feet.  I told them they better well document my chart cause SS wasn't in the habit of approving just anyone.  Dr must have spelled it out perfectly, as I was approved shortly after sending in the forms.  My kidney kept getting worse and here we are now.

I don't remember the paperwork being a nightmare, but I have a long work history of dealing with a LOT of paper.  My mind is a very strange place.

[justagirl2325]

Could not agree more, the paperwork is crzay - and I am an accountant by trade so I know paperwork.

Back in July when my husband had to quit work and start D (he worked construction right up until his kidneys failed) I applied for Canadian disability for him.  I had all the I's dotted and T's crossed.  Three months went by and they said no.  Pardon? Sorry, how about you work construction on dialysis.  They talked to family doc and kidney doc, social worker etc. Then two months later they said well maybe you could qualify medically but you haven't paid into the plan in 2014 so, no.  I tried to argue that yes he has paid into the plan except you won't be able to see that until he files his 2014 tax return so how about instead of saying no in Decemeber and making him appeal (which could add another year) you put his application aside until February 2015.  No.  At that point my husband lost it.  He called the adjudicator and asked where she lived.  She was a bit taken aback and said why do you want to know that?  He told her just wanted to know where he should go for New Years Eve dinner.  Considering he hadn't earned a dime in 6 months and she was the one that was impeding his ability to collect pension the least she could do was buy him dinner as he couldn't afford groceries.  Needless to say we got a new adjudicator.  She agreed to put the file aside to wait for tax return.  I filed the tax return and told him - there now they should have everything.  Guess what?  Now they want infor from his eye doc.  They could have spoken to him any time in the last 8 months.  Another delay.

[Riki]

Wow.  I didn't have that much trouble getting my disability pension.  I did have help getting everything together, though.  There is an organization here that helps people with disabilities file paperwork for pensions or grants, or help them find work.  All I really knew was that I needed to pay into Canada Pension for 6 years before I could qualify.  At that time, I'd only paid in for about 3 years.  So, I worked for 3 years while on dialysis.  It wasn't easy, and the pay was crap.  What sucks is that now, I don't get enough to actually live on, at least on my own, because of how little I paid in.  I have no choice but to live with my mom and I rely on her to pay most of the bills.

The organization here that helped me is called the Council of People With Disabilities.  I don't know what their equivalencies are across the country, but like I said, they were a great help.  They told me that most people are denied on the first try and I was ready to appeal, but I was approved.  I'd look to see if you can find a group like this in your area.

[JW77]

@Charlie B53

Disability Living Allowance is a UK  disability benefit. The form is about 60 pages long, and application only lasts a year in some cases.

We also have PIP, personal independence payment (which replaces DLA later this year)

I've also had another entitlement stopped as they deem me to have too many savings! (their error!)

[Michael Murphy]

I had a strange experience filing for disability.  Every one at my dialysis center told me they had been turned down and had to appeal.  I tried to get a apointment with the same social security center and all I could get was a phone appointment after several tries in which the social security worker blew me off I tried to apply online.  Figuring I would be turned down and could go right on to the appeal process.  In about three weeks I got a notice that I was approved.  Strange I assumed the online form was going to get me rejected.