Miss Understood: ‘Starving’ People with Disability Cases

Miss Understood: ‘Starving’ People with Disability Cases

As pain sufferers we often deal with scrutiny, difficulty getting our pain medications, and finding the right doctor who really listens to us. And for those of us who are not able to work, we have to deal with filing for disability.

As if filling out all the paperwork isn’t tedious enough — which is understandable — the entire process sometimes ends up taking years.

I knew right away that I would be denied, because my doctor said they deny everyone the first time they apply. He already had a recommendation for a lawyer I should see once I got my first denial letter.

Caduceus Medical Symbol ChromeSo far the process has taken 1 year and 8 months, with the current status being “waiting trial date.” I’ve done my part. We’ve submitted everything they’ve asked for and then some, but it doesn’t make things move along any faster and I have a theory as to why.

A theory I came up with after talking to several people who went through the process and either got tired of waiting so they returned to work or had to go back to work because they couldn’t afford to keep waiting.

They want to starve you. They make you wait months and months, then a year goes by and maybe another and you lose all your savings because it’s what’s been getting you by. So you’re left with nothing and you can’t work because your doctor has ordered you to stop working. Maybe you have a spouse, but you can’t make it on one income or maybe you’re alone and no one else can help you.

You’ve been starved by the process of waiting for disability to approve your case. And because of it you’re going to close your case and go back to work because it’s easier.

How is it justifiable for a person with a lifelong illness — who has proof and doctors backing up their claim that they shouldn’t be working — is now back at work and a risk to themselves?

Some disability cases fall through the cracks, get approved right away and the person is perfectly fine. Why don’t the legit cases fall through the cracks? How are the frauds getting by? Should we call them to find out how it’s done so we can finally get the help we need?

It’s not just about the financial assistance; we would get medical coverage as well. That would help in so many ways; more care and prescriptions filled at little to no cost. The possibilities are endless. Some people only see dollar signs, but I see medical insurance at little to no cost and more services being fully covered instead of having to pay out of pocket.

The last time my lawyer checked, I was in the system awaiting a trial date. How hard is it to assign a trial date to a case? I know there have been cutbacks everywhere but people have been waiting long enough. Why not let the lawyers choose a date to take some of the work from the court system? Then they’d just have to worry about the people without lawyers and the list would get smaller.

I refuse to be starved from my case. I’m okay with living under a bridge for a few months until I can fight the appeal in court. Although I know our friends and family would never let that happen.

I’ve been fighting my diseases since age 22 and have done a darn good job for 7 years. But over the last few years my body has taken a beating and I’m not the same physically.

I want my day in court and I’m not going anywhere until I get it, and neither should the rest of my fighting brothers and sisters out there.

Arlene Grau

Arlene Grau

Arlene Grau lives in Southern California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

There are 17 comments for this article
  1. BL at 11:33 am

    rk, you’re suppose to put money back while you’re working. Assistance programs are for those who have the least. You spend the money you have on the basics, rent you can afford means you may have to move. No cable and landline or cellphone, not both. No eating out, no new clothes, etc. In my work I found that those who didn’t qualify for assistance based on income and resources are those who don’t want to adjust their life style. They want to continue living on income they don’t have.

  2. rk at 11:20 am

    Again what is someone supposed to do who has nobody cant live on 1200 a month w having a car oayment and all other bills. Id of loved,to keep my $21an hour government job or d9 what i went to school for n not have to worrt about money 24 7 but due to my disabikities i cant do it any longer, but i cant live in 1200 a konth either this is bs that ppl who need housing and food help cant get it but ppl who dont need it get it. I wish theyd make this system fair n take all criminals n addicts off disability amd take away their housing n food help ,it isnt fair or right

  3. BL at 10:49 am

    Christine Reyes, how long you’ve worked or how my jobs you’ve worked has nothing to do with being found disabled. Your Established Onset Date is the date that the medical and non medical evidence proves you were unable to perform SGA doing jobs in the national economy, if you’re under 50. If over 50, that you’re unable to perform SGA and have no transferable skills. How long you’ve been seeing a dr or when you were diagnoised has nothing to do with it. A diagnosis alone won’t win disability. You must prove inability to perform SGA. That is SSA Law.

  4. Christine Reyes at 8:05 pm

    i waited 5 yrs. my judge gave “little weight” to any doctors and reports. She said the bottom line was she stated, it did not matter that anyone else said I was disabled only if and when she said I was and after living on food stamps and $30 a month, food banks, etc… for 5 years and one month after first applying and a strong work history this judge awarded me only 1yr and 6 months of a backpay. I thought judges were obligated to keep up on current laws. This judge showed not only that she has no regard for what I have gone through but ignored that my doctor was my doctor since two years before I was diagnosed, by him as having fibro, she ignored that my counselour sessions, which discussed my reactions and handling of my diagnosis. She ignored that a rhumetologist, sweveral other doctors, including SSI’s own doctor evaluations. Only agreeing with reports from doctors Ib saw maybe once or twice. Is this my reward for working sometimes two or three jobs at a time for the last 25 years? This ALJ only awa\rded les than 25% of an award , my attorney denied pay. maybe 1 less attorney willing 2 help

  5. BL at 7:11 am

    JW, most attorneys don’t look at the medical records until right a few minutes before the hearing. Claimants think that an attoeny wouldn’t take their case if they didn’t have a strong one and this is not true. Attorneys gain experience when they go before an ALJ, it doesn’t matter if the claimant wins or loses. Local attorneys that specialize in Social Security Law are better. They know the ALJ’s and often socialize with them. Their practices are smaller and they can give the claimants case more attention.

    Asking specifics like, if you have a question will you be dealing with the attorney or their assistant, is always a good idea. If you email the attorney, does the attorney answer the email or does their assistant ? Claimants pay the attorney to argue their case before an ALJ, it is impoartant to remember that. An attorney isn’t going to read all of your medical records and tell you what you need to winfrom your drs that is missing.

  6. JW at 3:38 am

    ALLSUP is the worst!!! They hand your case off over and over to people that are basically secretaries. They will take any case that is brought to them. The same goes for all those television lawyers and disability specialists. Get yourself a local lawyer that specializes in disability. At least you will have a person that you talk to before your hearing.

  7. Rainey at 10:26 am

    I am well aware that the criteria for getting disability benefits are not the same for every public agency/ private disability insurance policy. Getting state disability would not guarantee that Arlene could get SSDI. If she met the criteria, it could help pay the bills for a little while.

    A lot of people in CA go from state to federal. In order to qualify for state disability, an expert must first look over the records and determine that the applicant is incapacitated. That expert’s opinion could be used as favorable evidence in an SSDI proceeding.

    I’ve been told that getting through the application period was easier before 1995. If they ran out of assets, applicants could qualify for Welfare.

  8. BL at 12:27 pm

    LarryK, you had a On The Record Decision (OTR) When there is enough medical in the file to make a decision an OTR is usually made. If there is not enough evidence, the case proceeds to the hearing. Cases are routinely looked at to determine if an OTR can be made. A claimant or their attorney can also submit an OTR request. Most cases proceed to the hearing due to lack of evidence. Few claimants are aware of what in required regarding medical evidence in determining disability. Few claimants get their medical records and read them to be sure certain info is there and that there are no errors. Few claimants know what the SSA Laws state regarding what is required to determine someone is disabled. It is a complicated process.

    Rainey, the criteria other goverment agencies or private companies use is not the same criteria that SSA uses. Someone being approved for disability by another goverment agency or a private company does not mean that they will be approved for SSA Disability.

  9. krissy at 11:10 am

    Someone mentioned if you can work you shouldntbget ssdi,well how is anyone supposed to live on 1300 a month??when they have a cr payment and no help make too much tobqualigy for foodstamps,make too much for Medicare help,make too kuch for housing help .tent is averagr 750 where i live my rent now is 680 so tell me what other choices are there otger then to work no i am not supposed to ve working at all,but i cannot live on that little money ,i cannot believe working 15 years longer then some people on disability have worked and i only get 200 more a month that isnt right at all. Im forced to work due to this country only helping those who dont truly need it. I know many ppl on disability get practically free NICEhousing and break allthe rules regarding that have got in trouble w the law in jail etc i believe those who get any kind of legal trouble should NOT qualify and have their benefits taken away immediately,and then give help to those like myself who have nobody and cant live without working.

  10. LarryK at 9:54 am

    I thought this exact thing when I started the process for SSDI. I then heard that from doctors, lawyers and many more. All together, it took me 2 years to finish the process. I was denied multiple times on my own. Then I hired a lawyer. That took another year. I was stuck in trial limbo for some time. Then, the lawyer came back and told me they wanted to settle. Social Security had posed my case to an in house specialist as a theoretical case. He flat out told them I wouldn’t be able to find meaningful employment. Why not do this in the first place? I think the answer to that is exactly as you stated. It’s sad, but true. My entire process from onset to SSDI cost me a lot. A career in the Air Force was lost. Our home was lost and we had to file chapter 7. This isn’t the way our society should work. This isn’t the way human being should treat one another.

  11. Coonhound at 7:10 am

    It is a hard road no doubt. You are right, most people get turned down the 1st AND 2nd decisions (made by SSA) and only are approved at their hearing w/ the ALJ.(independent). I have some of the same problems you have (MCTD or ‘lupus overlap’ also systemic sarcoidosis).
    It took me 2yrs 4 mos. After first rejection I called ALLSUP, They are not lawyers but representatives/advocacy organization. They wont take your case unless they feel they can ‘win’ and have >90% success rate.’

    While you wait for your hearing you could ask your attorney to file a ‘BRIEF’. It is simply a summary of your illness, functionality, etc condensed from all the records submitted. This can get you approved before your hearing. Doesn’t hurt to try.

    Generally I agree w/ BL. If someone can go back to work they don’t need and shouldn’t quality for SSDI. By filing, you aren’t saying your doctor said you SHOULDNT work, you are stating that you CANNOT work and they DO mean ANY job in the national economy .
    The most important paperwork is your Physical Capacities Evaluation paperwork. Get the doctor you trust the most and ask them if they would go over it with you prior to, or better yet WHILE they are filling it out. (thank you Dr.G!!). Many doctors don’t want the ‘hassle’ and honestly couldn’t fill them out w/out alot of guessing due to the nature of some questions and how your symptoms affect your abilities to perform certain tasks (often asking for periods of time or percentages). It also wouldn’t hurt to write your Congressman as well.

    Also you should PERSONALLY read ALL of your records that are submitted. They are yours and your request cannot be denied, except in certain instances regarding psychiatric records.
    There were so many mistakes in mine I thought sometimes I was reading some other patient’s files. Some of these may need to be amended. You will have to make corrections and they will be added to your records.

    I think the process, while inhumane, DOES weed out alot of people who are looking for a free handout.(Also may be a contributing factor to some deaths due to lack of regular medical care and medication), On the other hand it DOES put you through the wringer. Then when/IF you are approved you get a lump sum which basically makes you ineligible to qualify for subsidies/assistance. My meds, doctor bills, and premiums make up a very LARGE percentage of my SSDI income which is basically right at the Federal Poverty Level. I could never have made it alive w/out insurance and help from girlfriend and family, even now WITH SSDI/MEDICARE.
    Since you are applying so young like I did 5yrs ago (@36) your benefits will be minuscule. We didn’t work long enough to put much into the system.
    Of course It is frustrating now to see the govt approve massive relief efforts, foreign aid (Egypt 1 billion, Israel 2 billion), and station troops in every other country around the globe (65,000 still in EUROPE!!), then money for space flights, etc, etc while we worry about ending up on the street and are a burden on our families (if we are lucky enough to have a supportive one).
    BUT, that IS the game and how it is played. So being persecuted by the DEA doesn’t come as much of a surprise after going through the disability experience. The Federal government of this country is NOT your friend and does not represent your interests. The USA is turning into a fascist empire. Yes, fascist. The politicians and entrenched bureaucracies favor corporations and their ‘contributions’ over the needs/desires of the people who they are supposed to represent. I don’t think the avg American wants to see their jobs shipped overseas or corporate welfare then get criticized for applying for assistance because they feel ‘entitled’. Corporatism and an increased police state are the two main indications of a move towards fascism. See flagrant violations of the Constitution by the NSA/DEA/ATF/State and local LE/for profit prisons/etc.

    Another thing that leads to patients suffering, and you mention it, is the lack of timely (or any) medical visits and medication. Check and see if your state has an assignment system and apply for pharmaceutical assistance (I presently get free Symbicort). This was the only way I could get insurance after my COBRA ran out due to pre-existing conditions. That might have changed w/ the ACA(Obama Care) but I’m not sure.

    I wish you the best with your health and your case. One thing I’d like to mention, and this goes for anyone reading this as well, is this, don’t give up on REMISSION. I was diagnosed in 2000 and was in very poor health (had to take FMLA from work) and drop out of college as well. Then around 2003 I just got better, no rhyme or reason as I was not on any meds at that point in time..
    I felt like my old self again. I finished my degree, got a job in county school system, had a steady relationship, many positive things happened. While my illness came back in 2008 (10x worse ), it still gives me hope that it CAN happen again
    Hang in there and thanks for sharing your experience w/ us.

    *Those of us w/ connective tissue diseases face so many symptoms and systems involved in addition to pain. I feel funny describing myself as a ‘pain patient’ as my whole body is falling apart at this point. I take close to 20 meds and have a ‘team’ of doctors (Endocrine, Pulmonary, PCP, Rheumatologist, ENT, GI,Neurologist, and others like Orthopedic & Dermatologist when needed) in ADDITION to having a pain management doctor. I would be homeless (or dead) w/out help and support.

    Thank you for helping to bring attention to disabled citizens and how they are being treated in this once fine country of ours. Hopefully the public will come to see this. With their support and that of a few more doctors and pharmacists w/ any GUTS (see /Dr Ibsen/Hurwitz/Sarlerian), we can apply pressure to the entrenched powers that block our barriers to optimal treatment and then things will change.

    Coonhound

  12. Krissy at 1:18 pm

    You forget to mention when you finally dO get approved, ITS NOWHERE NEAR close enough to live on and i STILL have to work part time which has made me have no quality of LIFE and im only 40. With what these ahole dr and pharmacists denying medications and this im surprised im still alive. I worked from 15 -37 also and most of it was decent money,and i dont get close enough to live on its a joke.

  13. Rainey at 8:33 pm

    Arlene,

    Have you considered applying for California disability? If you qualify for state disability, you could get up to a year of benefits. Can you get MediCal? It won’t help with a lot of day-to-day medications, but it could really bail you out if you have a hospitalization. Receiving CA disability may also help your SSDI application because the judge will see that somebody has already determined you are disabled. SSDI is a game changer. You have a steady income and manageable medical bills. I hope you win your case.

  14. BL at 2:34 pm

    Veronica Clark, your SSDI monthly benefits are approximately half of what you made when you were working.

  15. Veronica Clark at 1:39 pm

    Miss Understood: It seems to me that some of what you say is true, but due to your young age, you have it wrong. They wait, and wait, for years….so that when your day in court finally does come, and the judge agrees with your lawyer, they look back only so many years and base your disability on your income, which is NOTHING – because they make us wait for years!! I have fibromyalgia, severe migraines almost daily, sjogrens, degenerative disc disease, a heart defect, and am retaining water and they do not know why. I’m talking over 25 lbs. of fluids. I can’t walk many days because my feet hurt too much and are so swollen with fluids, that I want to cry. I’ve had most of these for 20 years or more. I didn’t fight for disability…I fought the pain so I could work. Until I couldn’t….. Being on disability isn’t all it’s cracked up to be, trust me.

  16. BL at 12:32 pm

    When someone is not able to work because of their disabilities, they are not able to work period. If they are able to go back to work because they can’t afford to wait for their hearing any longer, then they are able to work. SSDI & SSI is for those who cannot work period. Those under the age of 50 must prove by medical and non medical evidence that their impairments so severely restrict their ability to function that they can’t do any jobs in the national economy make at least SGA, which in 2015 is at least $1090 a month. They may have to take a job that they know nothing about and be paid much less than they were in their previous job. The jon may or may not have benefits.

    Very few claimants have gotten their medical records and read them. They think drs are also mind readers. They also think their drs write down everything they say and everything their dr tells them, which is not true. The restrictions and limitations that their dr has given them needs to be written in their medical records. The treatments that they have tried and their outcome as needs to be their along with all meds. A patient thinks if they tell their dr that they have experiencing severe side effects of a new med and tells the dr exactly what those side effects are that the dr writes it down. Even if the dr does write it down the first time, if the patient continues to have the side effects, they need to tell the dr again at each visit and get a copy of their records from that day to be sure the info in written down. A patient needs to tell their dr the activities of daily living that they need help with and the ones that others must do for them at each visit and be sure it is writen down. Drs have no idea what is needed to be approved for disability. They may have patients on disability but that does not mean they know what is required. A dr writting a letter saying you’re diabled means nothing because the criteria a dr uses and the criteria SSA uses is no the same.

    Once a medically determined impairment has been diagnoised by an M.D. the focus shifts to the claimants ability to function. Being diagnoised with a medically determined impairment means nothing, if your ability to function isn’t so severely restricted that it prevent you from performing SGA doing jobs in the national economy. Medical and no medical evidence is used to prove the claimants ability to function, it must be consistent. SSA sends you forms to fill out when you first apply. If you put on your application and the form that your pain is so severe that you can’t walk or stand for more than 15 mins, but you also say you go to the grocery store and shop, that is inconsistent. If you must use a motorized cart at the store, that is more aloyng the lines of not being able to walk or stand for more than 15 mins. But, the only way SSA will know is if you tell your dr and be sure it is written in your medical records and if you but the details on the form and your application. If you say you can’t sit for more than 20 mins, but you go out to lunch with friends and/or you go to church, that is inconsistent. Activities being difficult does not mean you’re disabled by SSA laws. If your pain is so severe that you can’t concentrate, but you play computer games, that is inconsistent. Claimants don’t realize that the same activity required to work are also required to do countless other every day things.

    When ODAR calls your attorney to schedule a hearing, it is your attorney who decides the date based on his schedule. If the first date given is one when your attoeny is not free and the next date is much later, but your attorney is free, then your hearing is scheduled for the later date. ODAR has all the other hearings, the ALJ’s schedules, etc.

    Some attorney don’t look at the claimant medical records until right before walking into a hearing. Claimants think is an attorney takes their case that they have a good chance of winning. An attorney taking a claimanst case means that the attorney is going to handle your case when in comes to the hearing. If the case is lost, the attorney loses a little time. They can’t and aren’t going to invest 25% or max $6,000 of their time into every case. Don’t expect your attorney to tell you if their is something your dr needs to say or do. Any forms or letters your dr does must be backed up by your medical and on medical evidence. Call the ALJ’s office to be sure they have received the medical records for the time between when you were last denied and when your hearing is. If the ALJ keeps your case open to receive additional medical records after the hearing, call when it is close to that time being up to be sure they have received the medical records. If you mail something, call and verify it has been received. Assume Nothing.