social welfare and dialysis

[beep]

i know in your country it is different than ours , but do you qualify for social welfare being on dialysis?

[Michael Murphy]

In the US we are declared disabled if we want to be and we collect the social security check based on our past earnings.  Two years ago I stopped working and went on disability, I also get a disability payment from the last company along with a pension from a company.

[Riki]

I get a disability pension through Canada Pensions Plan.. it's all I really qualify for.  Dialysis is considered a disability in Canada, but I'm not sure about anywhere else

[Michael Murphy]

In the US by law dialysis is a disability.  But talking to several patients at my clinic the local social Security office turned them down. They had to get a lawyer and sue. They eventually got it, but it cost them money.  So when I decided it was time to go on disability I decided to file online, rather quick, I was pleased by the process since the sooner the rejection occurred the sooner I could appeal.  Much to my shock I was immediately accepted.  I was puzzled until I realized that most dialysis patients minimize the impact of the treatments when I asked each said they did that.  Point is say as little as possible. Don't minimize your illness when applying for disability.






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[beep]

Been on HD past 3 yrs now. when first started nurse in hospital said u can go on welfare now DSP.   Filled  the forms out but they sent me in a spin so put them in a drawer..  also i was hoping to go back to work..since i been there 27 yrs thought company would show some compassion...yeah like hell.
now 3yrs later keep getting told to apply for DSP. Can't apply for age pension still 12 mths away
have found now everything's changed gotta fill out new forms gotta see a gov.approved dr  to assess my illness  my 3drs  diabetic kidney cardio...all say i should apply  tho i spoke yo oud welfare people some say i may get it n some say i may not ...i do have enough savings to get me thru next 12 mths but after working n paying taxes all my life 45 yrs surely they can look after me now that im chronically ill







sp mod Cas

[smartcookie]

If you are in the US, you automatically qualify for Social Security Disability (SSDI) due to end stage renal disease.  All you have to do is make an appointment with your local Social Security office and they will help you fill out the forms for disability and Medicare.  Medicare should retro back to the date you first started dialysis.  Your social worker should know if you qualify for Medicaid, since Medicaid is different in every state.  Also ask your social worker if you qualify for LIS, a low income subsidy.  this allows your state's Medicaid to pay your Medicare Part B premium and allows you to get your Part D prescriptions at Medicaid cost.  No donut hole!  Hope this helps!!!

[Simon Dog]

I am in the midst of applying for SS disability.    They just sent me forms to fill out answering the same questions on my original application.

What is a pain is that they ask many questions about capability (what can I lift; can I follow instructions; etc.) even though dialysis is a statutory qualifier.   It would be much easier if they just said "If you are on dialysis, skip the next 50 or so questions".

[LorinnPKD]

Simon Dog, out of curiosity, did you submit your original online or hand it in at the SSA office?

I had such a hassle at the actual office (long lines, given wrong forms, scoffed at!) so I gave up and submitted online.  It was quickly approved, done and done.  So easy. Had I handed in a paper application, I would have had to do an interview(!) and waited months for an interview slot to become available.

Yay for online applications...

[Michael Murphy]

Smart cookie be careful about sending people to Social security most of the guys in the clinic I go to were turned and had to hire a lawyer they all won but the lawyers took a big chunk out of their retroactive payment.  Here this I figured I would apply on line and when I was turned down I would hire a lawyer.  Much to every ones amazement  I was accepted with out any problems.  What I think happens is  most dialysis patients hate pity and so when asked they tend to minimize the impact ESRD has on our lives.  People need to be open with the SSA  staff about the difficulties they face.

[LorinnPKD]

Exactly!

I've mentioned to a friend who works with an advocacy group for disabled people that they should just send everyone online. After receiving the application, the SSA will ask the listed doctors to send the appropriate medical evidence and then make the decision based primarily on that.

I think one problem is that the SSA people may become cynical because they're so bombarded with humanity day in and day out.  In my case, when I went to the office, the first guy I talked to actually laughed at me.  I am soft-spoken and polite, and when I asked about SSDI and medicare, he LAUGHED.  And then he squinted at me and said HOW OLD ARE YOU?  It was horrible!  I was 40 at the time, and in some kinds of lighting it's hard to guess my age, but he seemed doubtful that kidney failure could even happen to people under 65.  Took me ten minutes to convince him that yes, I had a genetic issue that tanked my kidneys and my own doctor told me to march myself to SSA for help.  Mind you, this was just the guy who was supposed to hand out application forms and set up interviews.  It was maddening and a total waste of time.

When I chatted with the SSA people who actually make the assessments, they were knowledgeable and direct.  So I think letting them make the assessments based on medical evidence, where it's crystal clear that we're on dialysis and dealing with that, is really the way to go.

[smartcookie]

Thanks for the information!  I try to write down exactly what my patients need to ask for (I work with a generally uneducated and rural population).  I make sure to tell them that they do not need a lawyer and that they automatically qualify.  Some of them have done the forms over the phone with an agent. 

Lorinn, that is awful!  I would have reported him to his supervisor for unprofessionalism.  Completely uncalled for.  Why do people think they can treat other people like crap?  Why do they always assume people are lying about diseases and health?  At that point it is not about ignorance anymore.  Everyone knows someone who has a health condition of some sort and is young.  He was just being hateful and arrogant. 

[Riki]

I applied to CPP with the help of the local disability advocacy group.  They told me that everybody is declined the first time, but usually are accepted on appeal.  I was accepted right away.  I don't remember the process at all

[beep]

I applied to CPP with the help of the local disability advocacy group.  They told me that everybody is declined the first time, but usually are accepted on appeal.  I was accepted right away.  I don't remember the process at all

If i may ask Rikki  where are you  n may i ask your age( yeah i know not sposed to ask ...but hey we are all anonemouse here:)

[Charlie B53]

I started SSD years before I started Dialysis.  My legs were swelling already so bad, leaking every day, getting infected way too often.  One time so badly I ended up in the Hospital again.  The Dr's told me that I HAD TO stop working, go on SSD, stay at home with my feet up to reduce the swelling.  12 days in the Hospital that time.  My long hai got so nsty snarled laying in that bed, even with detangler it wouldn't brush out.  I ended up letting 4 y.o. Grandson cut all my hair off.  My head has been cold ever since.

I told the Dr's that I had applied once before when I broke my back.  Denied.  That if they wanted me to quit working they had better Document, Document, DOCUMENT in my medical record, to spell it out very clearly the what's and why's as SS would not approve me unless it was very clearly a medical necessity.

I was surprised at how much paper came in the mail, the stupidity of some of the questions. But I filed it all out, and was surprised to be approved.  That was in '08, by '13 my kidneys were still only down to 20%. I have yet to have 'kidney sickness'.  I was soo tired of the leg swelling and infections my Dr let me start PD early.  Within a week my legs were near normal size.  They will never look 'normal' as the skin damage from the years of swelling have scarred and discolored them.  I still Believe Dialysis have save my life, I could easily have died from some of the infections I've had starting in my legs.

[GA_DAWG]

One thing to keep in mind is it is 5 months before you begin to receive SSDI. So, apply as soon as possible.

[Michael Murphy]

I think the SSDI waiting period is not based on when you start dialysis but when you become unemployed.  If you want to go go SSDI make sure you either have disability insurance or 6 months of savings to bridge when you retire till you begin disability. Retirement or pensions are like disability insurance they don't count against the waiting period.

[LorinnPKD]

^^ That's exactly it.  You have to be in Stage 5 AND unemployed for five months.

In my case, I left work in February, was diagnosed Stage 5 at the end of April, started dialysis in July, and began getting SSDI in October.

[Simon Dog]

One thing to keep in mind is it is 5 months before you begin to receive SSDI. So, apply as soon as possible.

SS will apply a retroactive start dates (not sure how far they will look back though).   By applying early, you will get payments as soon as you are eligible.

I applied on-line and it took 2 months and 1 day for my application to be processed.