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KosAbility is a community diary series posted at 5 PM ET every Sunday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
I spend most of my workdays dealing with applications for Social Security Administration (SSA) disability benefits. Many people become very disappointed when their disabling condition that keeps them from performing their prior occupation does not qualify them for SSA disability.

The simple answer for this is that we have 2 completely different types of disability in federal law. The first type of disability provides income replacement. Examples of disability for income replacement purposes includes SSA, the Veterans Affairs (VA) disability pension system, and Workers Compensation (WC). The second type of disability definition is used to protect rights in various contexts such as school and work. This definition, usually called section 504 disability, is the basis for rights under the Individuals with Disabilities Education Act (IDEA) and the American with Disabilities Act (ADA).

Follow me below the squiggly to learn how these conflicting definitions confuse us and set us up for disappointment when applying for SSA disability benefits:

Income Replacement Disability

The 3 major forms of income replacement for the disabled are administered by SSA, WC, and the VA.

The VA and WC systems pay for less than total disability

Briefly, both the VA and WC systems will provide income replacement benefits for individuals with as little as 10% (for the VA) or 5% (for some state WC programs) disability.

WC only pays if the resulting disability was related to a workplace injury. In contrast, the VA will pay for service-connected injuries and their natural consequences without regard to resources and will pay for other disabling conditions if the veteran has few resources. In addition, the VA considers all veterans with 100% disability in their system as "unemployable."  

How WC and the VA determine disability is a topic for another blog. Nevertheless, the method that WC and the VA use to determine disability is different than the process used by SSA. A VA determination of "unemployable," therefore, might or might not result in an SSA determination of "disabled."

SSA pays only if an individual is "disabled"

SSA uses a 5-step evaluation process to determine disability for adults. Childhood disability determinations require a different analysis that need postponed for another blog.

Step 1 examines whether the individual is working and if that work activity is substantial and gainful. "Substantial" is defined as earning more than an amount set by SSA every year. For 2013, that amount is $1,030 a month for non-blind applicants. "Gainful" means activity performed with the expectation of income. For example, passive income such investment income is not "gainful" unless the individual actively manages the portfolio and receives income from the management activity alone. Further, the activity is not "gainful" if the individual receives the income from accommodated work. Examples of accommodated work include special hours, more frequent breaks, specialized equipment, reduced productivity, or working due to family relationship or other altruistic reason.

Step 2 assesses whether the individual has any severe impairments. A severe impairment is a medically determinable condition that results in more than minimal limitation in the person's ability to perform work-related activities. In addition, the impairment must have lasted or must be expected to last at least 12 months. To establish a severe impairment requires objective medical findings by an acceptable medical source such as a medical doctor or psychologist. Subjective reports by the individual alone is not enough. For example, Mary Sue says that she is disabled due to depression but has no record of treatment or evaluation for the condition although she obtains medical care for other issues. Mary Sue will have more difficulty establishing the condition is severe than Billy Bob who regularly obtains specialized psychiatric care from a local clinic, provides clinic notes for that care, and the clinic notes show that he continues to have difficulty with memory despite complying with recommended treatment.

Step 3 considers whether any of the severe impairments meet or equal the listings published in the Blue Book, also known by its formal name as 20 CFR Part 404, Subpart P, Appendix 1. There are separate listings for adults and children. Each listing generally requires a fairly profound level of illness or dysfunction. For example, the listing at 1.02A, major dysfunction of a weight-bearing joint, requires the inability to ambulate effectively, which basically means that the upper extremities are occupied with the use of assistive devices when walking, such as the use of 2 crutches or use of a walker as well as depending on a wheelchair to move about. An individual whose condition meets or equals any listing is "disabled."

The next step, sometimes called "step 3-and-a-half," assesses the individual's residual functional capacity (RFC) given their severe impairments. In other words, it defines what work-related activities can the person perform. SSA uses the medical evidence submitted into the record as well as the individual's subjective reports to make this determination. A typical RFC addresses how much a person can lift and carry as well as how long they can sit stand or walk. Many also address postural limitations such as bending or kneeling, environmental restrictions such as work at unprotected heights, and mental limitations.

Step 4 addresses whether the individual's RFC permits or precludes the person from performing past relevant work, or occupations performed for sufficient period to learn them fully. SSA uses the Dept. of Labor's Dictionary of Occupational Titles (DOT) or the opinions of independent vocational experts in making this determination. The DOT provides the job requirements for various occupations including exertional level (i.e., sedentary or light), skill level (i.e., unskilled or semiskilled), and other job requirements (i.e., frequent or occasional kneeling). An individual who can perform any past relevant work is "not disabled."

Step 5 assesses if the claimant can perform other work. SSA uses the Medical-Vocational Rules (aka Appendix 2 to Subpart P of Part 404 or the "grid rules"), sometimes supplemented by the testimony or reports from an independent vocational expert, to make this determination. The grid rules consider the individual's age, education, work experience, and RFC. An individual is "disabled" if the grid rules direct a finding of disability, if the vocational expert reports or testifies that there are no occupations that a person with the same RFC can perform, or if other reason exists to find that the RFC substantially erodes the available occupational base sufficiently to warrant a finding of "disabled."

In sum, the standard for SSA disability for adults is either: profound limitations or illness of at least 12-months duration or likely to last at least 12 months that meets or equals the listings; or, inability to perform any past relevant work and inability to perform any other work.  

This is a very difficult barrier to overcome.  

About 33% of people applying for SSA disability obtain favorable determinations at the initial or reconsideration levels. State Agency medical and psychological reviewers make these determinations. On average, about 50% of those who request a hearing before an SSA Administrative Law Judge (ALJ) receive a favorable decision, usually because their condition worsened between reconsideration and the hearing. Only about 5% of those who appeal an unfavorable ALJ decision eventually receive a favorable determination.

Rights Qualifying Disability

The definition of "disability" to qualify for rights under federal law uses a lower standard than SSA.

Section 504 of the Rehabilitation Act (RA) of 1973, the earliest of the rights-qualifying disability laws, states that "no qualified individual with a disability in the United States shall be excluded from, denied the benefits of, or be subjected to discrimination under" any program or activity that either receives Federal financial assistance or is conducted by any Executive agency or the United States Postal Service. Each Federal agency developed its own section 504 regulations that include reasonable accommodation for employees with disabilities, program accessibility, effective communication with people who have hearing or vision disabilities, and accessible new construction and alterations.

Under section 504, individuals with disabilities are "persons with a physical or mental impairment which substantially limits one or more major life activities" where
"major life activities include caring for one's self, walking, seeing, hearing, speaking, breathing, working, performing manual tasks, and learning."  

Examples of disability under section 504 include the following:

     * arthritis of the fingers that reduces typing or keyboarding speed
     * depression that reduces the ability to remember or concentrate
     * a learning disorder resulting in the ability to perform only single-digit addition.

     Note: these might or might not be "severe impairments" for SSA

Accommodations under section 504 could include:
     * a keyboard designed to reduce carpal tunnel syndrome pain
     * a chair that supports an individual weighing 400 pounds
     * allowing a sit or stand option when collecting movie tickets

     Note: these might or might not meet the SSA definition of accommodated work

Enacted in 1975, the IDEA requires public schools to make available to all eligible children with disabilities a free appropriate public education in the least restrictive environment appropriate to their individual needs. Schools must identify children with section 504 disabilities and develop an Individual Educational Plan for accommodations, if appropriate.

The ADA later modified the definition of disability to include any individual who "has a physical or mental impairment, a record of an impairment, or is regarded as having an impairment." In addition, the ADA extended discrimination protection and accommodations to most individuals who work in the private sector, work for state or local government, use public transportation, or use public accommodations.

Many people with a disabling condition are disabled under section 504 and "not disabled" per SSA

Joe Doe (not his real name) is a 35 year old pharmacist with severe arthritis of the right knee and a recently healed left ankle fracture. He clearly qualifies as eligible for section 504 accommodations at work because his injuries prevent him from standing or walking for a full shift, which most pharmacists must be able to do. His employer, a major drug store chain, could not accomodate his inability to stand and walk for a full shift. Joe exhausted his short-term and long-term disability leave. He is now unemployed.  

He applies for SSA benefits. Using the 5-step sequential evaluation process, the agency finds that he is not working at above substantial gainful activity (step 1) and has serious impairments of osteoarthritis of the right knee and history of fractured left ankle (step 2). Joe acknowledges that he can stand and walk without the use of a cane or crutches and can walk at a decent pace over uneven ground, so his impairments do not meet the listing at 1.02A, major disfunction of a weight-bearing joint, or 1.03, major reconstruction of a major weight-bearing joint (the left ankle) (step 3). SSA concludes that he is able to lift and carry 20 pounds occasionally and 10 pounds frequently because he acknowledged in his application that he helps with laundry and vacuuming around the house and sometimes carries the trash to the curb. As for his ability to sit, stand, and walk, SSA finds that he can sit for 6 hours and stand or walk for 4 hours in an 8-hour workday with occasional balancing, crouching, stooping, and climbing ramps or stairs but no kneeling, squatting, or climbing ladders (concluding step 3-and-a-half). A vocational expert affirms that Joe's abilities and limitations prevent him from returning to his job as a pharmacist (step 4) but states that a person with those same abilities and limitations could perform at least 3 unskilled light occupations. Joe is "not disabled" according to SSA (step 5).  

Hence our collective confusion and the source of disappointment

Like Joe, I am both "disabled" using the section 504 definition but not so according to SSA. The psychic effort needed to accept my limitations caused by rheumatoid arthritis was difficult. I cannot stand for more than about 30 minutes without pain. I type with 4 fingers because the others no longer go up and down in a regular enough pattern to rely on them. I rely on public transportation and comute almost 2 hours each way because driving the 1-hour to to work and the 1-hour trip back causes exhaustion so severe that I drift off to sleep at the wheel on the way home. I look unstable when walking due to balance problems and an intermittent limp.

Nevertheless, I work. Full time. With minimal section 504 accommodations of a split keyboard, bar mouse, ergonomic chair, and speech recognition software. My employer holds me to the same attendance, quality, and production standards as all others with my job description. My work activity, therefore, probably does not meet SSA's definition of "accommodated work."

It is tough to realize that SSA would likely not find me "disabled" because I accept my disease and resulting limitations as a component of my self-identity.

But I don't need income replacement. I earn income despite the disability.

So, disabled, but also "not disabled."

What's your story?

Originally posted to KosAbility on Sun Jun 23, 2013 at 02:00 PM PDT.

Also republished by Community Spotlight.

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Comment Preferences

  •  Upcoming Schedule: (10+ / 0-)

    postmodernista is the moderator of KosAbility’s diaries and maintains the schedule. If you’d like to sign up for an open Sunday, post a comment or send her a private kosmail.
    The content of the KosAbility diaries is important to many folk who depend on the exchange of information and ideas about their struggles with real life-changing conditions. The moderators of these diaries will not tolerate rude, disruptive, off topic, and/or threadjacking behavior. If in doubt, read our mission statement in the diary.

    Upcoming Schedule:

    June 23 - cloisterwood: SSD information
    June 30 - chicating

    All other dates are open at this time.

    Also, if you've written a previous diary in the distant past, please consider republishing it- our membership has grown, and there have been many helpful, informative diaries that our current members may be interested in, but have never had the opportunity to read.

    Anyone who scoffs at happiness needs to take their soul back to the factory and demand a better one. -driftglass

    by postmodernista on Sun Jun 23, 2013 at 02:04:08 PM PDT

  •  I have no obvious disabilities, (14+ / 0-)

    and in fact have some exceptional abilities. I lost significant amounts of weight and overcame hip bursitis.

    But I have significant allergies, from environmental (pet hair, grass pollen, house dust) to contact (latex, some perfumes, maybe other things) to food (only soy safe of the top 8, plus grapes, tomatoes, etc.). I have no doubt that I don't qualify under the SSA as disabled, though I would qualify for accommodations in some settings (e.g. if I were unlucky enough to be part of a jury that was fully sequestered).

    I take Zyrtec liqui-gels every day, because they're literally the only safe allergy medication I can find. Even with those, sometimes I cannot breathe without trouble. We've been having a very wet spring, so doing photoshoots like these sometimes requires a backup dose of liquid anti-histamine.

    Rachel and the Birch Grove 28 by *Windthin on deviantART

    I'm glad I can do this well. I do wish we had a better, more functional society so that I could get extra medical support, like a prescription allergy medication that would probably do more to help me. And actual regulations on pharmacy pricing. And living wage laws.

    But I get by pretty well, all else considered.

    Rachel and the Birch Grove 25a by *Windthin on deviantART

  •  mine is bipolar I and PTSD (8+ / 0-)

    years of extreme stress, plus family history, created the situation; the current medications seem to have mostly stabilized the most major swings, but it would be unrealistic to think that an employer would ever want me. There have been some definite cognitive losses, and while most of the time, I've pretty even, the bad days are really bad and unpredictable.

    I might technically qualify on both of the 'disabled' fronts, but as my last two employers paid into Teacher Retirement Systems, I have virtually nothing paid into SS, and every attorney firm I spoke to basically said it wouldn't be worth the trouble of trying, and I know I'm not capable of navigating that process on my own.

    Oy- it's a good thing that my family is willing to feed and house me.

    Anyone who scoffs at happiness needs to take their soul back to the factory and demand a better one. -driftglass

    by postmodernista on Sun Jun 23, 2013 at 02:34:28 PM PDT

    •  Some government employees qualify for (11+ / 0-)

      Medicare only disability.  

      This means that the disability determination by SSA does not result in income replacement but instead, allows the individual to obtain Medicare coverage beginning a statutorily prescribed amount of time after the date SSA determines that the disability began.

      There are several logical reasons why your attorney might have been reluctant to pursue your claim.  Attorneys and non-attorney representatives receive compensation from SSA cases on the basis of the lesser of 25% or $6,000 from payments covering the period from the alleged onset date through the determination date.  Because Medicare only cases generate no back payments, some attorneys will not help.  I suspect that might have contributed to the attorney's recommendation.  On the other hand, many attorneys and non-attorney representatives are not aware of the Medicare-only option for government employees.

      The future possibility of Medicare coverage, I believe, is very much worth the effort.  

  •  There's one other element of disability (7+ / 0-)

    that is very well worth discussing. As noted above, the ADA and Rehabilitation Act also prohibit discrimination against someone who has a "record of" an impairment or who is "regarded as having" an impairment.

    What that means is that employers, educational institutions, and places of public accommodation cannot discriminate against someone on the basis of that person having had a disability in the past, or on the belief that someone has a disability. You don't actually have to have any substantial impairment in the present to be protected by the ADA. This actually makes sense, because it's the discriminating person's mindset that matters more than the nature of the disability.

    People who have a record of an impairment or are regarded as having an impairment are not entitled to accommodations, but that's OK because the purpose of including them in the ADA's protected class is to prevent discrimination.

    It's also the way I would claim civil rights protections as someone with a well-controlled mental illness. My impairments, while significant in the past, have not required any accommodation in the last 2 or 3 years. Nevertheless, if I were fired because an employer believed that I had a significant impairment, or because I had a significant impairment in the past, I would have a valid ADA claim.

    This is also one way people with mental illnesses and other invisible or highly stigmatized disabilities can enforce their rights while keeping their privacy. If you're not asking for accommodations, then you don't have to disclose the existence of an actual disability if you can prove that you were discriminated against on the belief that you have the disability.

    •  I agree, the ADA and related laws works well (6+ / 0-)

      to prevent discrimination both at the workplace and in schools.  

      Some employers and educational institutions pay attention to the needs of those covered by section 504 because they do not want to undergo the costs of litigation.

      Many, however, are truly dedicated to provide their employees the best chance to thrive and help the business  succeed and, therefore, readily implement policies to prevent discrimination against those who might, in the future, require accommodations.  

      My employer is one of them.  

      And I am thankful.

      •  That's interesting, because (5+ / 0-)

        I've actually seen disability discrimination in every educational institution I've ever attended since high school. And that's several: high school, undergrad, medical school, and now law school. I've actually had some involvement in litigation, as either plaintiff or plaintiff's witness, in all except law school.

        •  Can you be more specific? (2+ / 0-)
          Recommended by:
          WakeUpNeo, weck
          •  Well... (2+ / 0-)
            Recommended by:
            FloridaSNMOM, weck

            I paid all my law school expenses out of a substantial settlement I received from my medical school. I had been expelled from medical school for having a diagnosed mental illness literally the day after the Virginia Tech shootings.

            I'm not going to elaborate on the law school incident that I'm aware of, which happened about a month ago, because there is a possibility of litigation.

            All the litigation I've had any involvement in has related to mental illnesses. All cases settled early, and I was never deposed, but I was twice interviewed by plaintiffs' attorneys and named as a witness because I could say with certainty that educational institutions' stated reasons for taking disciplinary action against students with mental illness were noticeably false (and therefore, as I know now, pretext for discrimination).

    •  Trying to figure out how this applies to my case (1+ / 0-)
      Recommended by:
      Cassandra Waites

      I have been diagnosed with Asperger's (now under the broad category of Autism Spectrum Disorder) and currently work two part-time jobs. With one, a teaching job one day a week, I receive accommodation and have for the past six years. The other is a contract position I've had for a little over a year. There, I disclosed my ASD and requested accommodation, which I was promised. However, I never received the accommodation, and without it I have not been able to perform up to the company's expectations. I expect my contract to be cancelled by the end of this year due to poor performance.

      I'm pretty sure I don't have a discrimination case because I'm classified as an independent contractor rather than an employee. And I've thought about applying for SSD because I've had a tough time getting and keeping jobs, but I don't want to think of myself as unemployable. Besides, I'd be bored sitting around with nothing to do.

      •  You may want to look into (0+ / 0-)

        the legal definition of "employee." Federal law looks into the actual circumstances of the job, not the piece of paper that says you're an independent contractor. In recent years, the IRS has begun aggressively going after employers that misclassify employees as independent contractors because the employers are liable for employment taxes. There's no set formula, but in general, if the employer controls or has the right to control how you do your job, you're an employee, not a contractor. See the list of factors at page 7 of this document. It's an IRS publication, but it lists the same factors that are used to determine whether someone is an employee for the purposes of labor standards and civil rights laws. If the nature of the job actually makes you an employee, then your employer must offer reasonable accommodation, and you may have a discrimination case for failure to do so.

        What I mentioned earlier doesn't really apply to your case, though. It's mostly useful in cases where an employer decides that an employee is "crazy" or "dangerous" after hearing about a mental illness and fires the employee. It seems like there's a spate of those cases after every mass shooting.

  •  Multiple medical issues (9+ / 0-)

    Which should add up to a disability. COPD with allergies and environmental triggers (cleaning products, perfumes, strong scented shampoos and deodorants, hair spray), fibromyalgia, some undiagnosed and untreated issue with my neck/shoulders, arthritis in several joints... I'm crossing my fingers it will actually go through, either way they make it impossible to work. Many days they make it impossible for me to do more than walk to the bathroom (and often that leaves me out of breath). But will SSA see that? I don't know.

    "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

    by FloridaSNMOM on Sun Jun 23, 2013 at 02:56:50 PM PDT

  •  This is an excellent post (12+ / 0-)

    I was originally on WC. The doctors were a joke. They didn't dare look into anything beyond orthopedics when it comes to work injuries and thus could not understand why I would end up on SSD.

    I was in that system for almost ten years and just kept getting worse. Part way through I applied for SSD and after a couple visits to SSD doctors I was granted it. Thank goodness.

    I say that because they looked at the whole me. They saw the other medical problems I have. They also must have looked at the blood tests and realized I have inflammatory arthritis. Something the WC doctors refused to diagnose.

    Earlier this year I finally went to a doctor outside of WC to see if I could get a cortisone shot in my shoulder since I was tired of pain and losing use of my arm. I put up with a lot of pain btw. One of the first things out of his mouth was I probably have RA.

    When I got home I looked at the paperwork for two blood tests. I then researched a bit on line and realize that if I had been properly diagnosed years ago by the WC doctors I could have started treatment for RA and might feel better now and actually have gone back to work. Now it is probably too late for me since the pain and inflammation are substantially greater and even with treatment the damage to my joints can't be undone.

    Your post does a great job explaining how SS looks at disability. It's too bad the different systems can not work together. I think it would help a lot of people who are getting left on the wayside and probably save money also. Sadly Worker Comp at least in Calif. has a rather punitive approach to injured workers and has for a very long time.

    So thank you for helping people out who need it.

    •  WC only looks at the work-related injury . . . (7+ / 0-)

      and related problems.

      SSA considers the combined effects of all the medical conditions that result in "more than minimal" limitations.

      This is a huge difference.  

      And it has the potential to change someone's life, just as it has yours.

      So glad that you obtained the benefits that you needed and deserved.

      •  I use to work for SCIF (5+ / 0-)

        the so called non-government government WC for SCIF. They are suppose to deal with any contributing problems that occur with a worker comp injury. Such as when a person has diabetes they may end up having to treat problems that arise through maybe surgery or other issues. Or when a person might end up having liver problems because they were taking pain meds prescribed by the WC doctor. But over the years the Republicans in  Calif. kept blaming workers for the costs and so they striped WC to only doctors who work for SCIF and the other few companies left doing WC.

        By law at least in Calif they were suppose to do more than just the minimum, they were suppose to deal with related problems. But that meant that if they told a patient they had a more serious medical issue they would have to deal with treating that. So it was not unheard of them lying.

        Sadly SS never gave out what they used to make their determination to me. I think if they also were more forthcoming with information it would have helped me.

        My life has not been changed by SS or WC. Sorry I do not agree with you. While at least with SSD I don't have to deal with trying to do work that would cause me great pain, I could have been helped a lot more if someone told me what the results of the blood tests meant. I would have less pain today and be able to do a lot more.

      •  anyone applying (2+ / 0-)
        Recommended by:
        blukat, Cassandra Waites

        for either Social Security disability (SSDI) or SSI disability should put down all their medical conditions. Improves the likelihood of approval at an earlier stage of the process.

        "I belong to no organized party. I am a Democrat."--Will Rogers

        by vgranucci on Mon Jun 24, 2013 at 02:48:44 PM PDT

        [ Parent ]

  •  I have a good chance of getting SSI (7+ / 0-)

    (or so I'm told.)

    The major issue is that no one has been assigned to my reconsideration. I've called my senator and hopefully that will work. I've been waiting over 3 months for that!

    Being completely w/o income is not fun.

    Get 10% off with KATALOGUE2013 at my shop, or go to the Kos Katalogue!

    by LoreleiHI on Sun Jun 23, 2013 at 05:05:43 PM PDT

    •  This can take up to a yr or more (10+ / 0-)

      so don't give up. It used to be that you would be paid back to the time you first applied. Congress changed that to cap it at a yr of back payments. Once Congress did this the making of decisions moved much faster because of the cost. Now days they seem to drag things out much longer.
        While I don't recommend lying, I never recommend downplaying the extent of your disability. ALWAYS use words such as "severe" and "extreme pain" when discussing your issues. In the Medical world the word Severe is as bad as it gets unless "Fatal" is to be the outcome.

       I have been off and on SSD and SSI about half of my life with periods of work in between. The last time I went back to work I refused any job that did not pay into Social Security. The first half or more of my life was paid in cash and/or under the table. While this made sense to my young mind, thinking I would bring home more money, if fact it hurt me when I got hurt because I had nothing on the record to fall back on. This caused me to receive much smaller checks and help. About 25 yrs ago I was declared permanently disabled meaning I didn't have to be reviewed every 3 yrs. I ended up returning to work in a similar field for close to 10 yrs until I could no longer even do this job. When I re-applied it still took over a yr to be granted coverage after jumping thru the hoops of Medical  and Mental exams . I was lucky enough to have reapplied before Congress changed the laws on retroactive payments so I was able to get a very nice check because of their foot dragging. If you are refused the first time, which is almost automatic, unless your disability is very obvious do get a Lawyer that will take the case and get paid only on if you win. We once had to roll a friend into court in a hospital bed with both a IV and oxygen and a nurse to attend to her needs. The Judge had a fit that she had been refused to begin with but sometimes the dramatic is needed to make a point.

      "the government's role should be to uplift, enlighten, educate and ennoble the citizen, not oppress them with taxation and intrusive laws," Gatewood Galbraith, Historic Marijuana Advocate, aka "The Last Free Man In America," RIP 1-3-12

      by SmileySam on Mon Jun 24, 2013 at 07:39:54 AM PDT

      [ Parent ]

    •  SSI (6+ / 0-)

      The SSI process can be a long and confusing one. I found out the hard way(it took years) that you really need a professional representative. It doesn't have to be a lawyer. I ended up with a woman listed in the yellow pages who used to work for SSA in the disability department. I had been waiting years for a hearing, and two days after she filed representation for me I got a hearing date. I found out that SSA had done nothing with my last appeal for at least a year before I got representation. SSA kept telling me that a lawyer wasn't necessary, but my case went nowhere without one. Then it went fast. One thing about the long wait was I got a lot of back-pay.

      In the judge I finally got someone who'd read my records. It was obvious by the questions he asked. before the hearing I seriously doubt anyone had even opened the cover. I'm not good with legalese, so I could have used someone to explain what they were telling me in their written communications.

      The whole process may have been a hassle, but IT WAS SO WORTH IT!!

      I wish everyone involved in the process good news, and Godspeed.

    •  I agree, representation helps (4+ / 0-)

      Attorney or non-attorney representatives know the system and will help you collect the relevant medical records in advance of a hearing or other administrative procedure.  They can help with the appeals process and keep you from missing a deadline.  They can question you at an ALJ hearing so that your side of the story is heard.  This assistance often makes the critical difference in obtaining SSA benefits or not.  

    •  I have a lawyer (0+ / 0-)

      The problem is that there's an institutional delay of over 2 months (as I just found out from the senator's office).

      And I'd be lost without my lawyer! I have memory issues, and get confused much more easily now. She's been wonderful.

      Get 10% off with KATALOGUE2013 at my shop, or go to the Kos Katalogue!

      by LoreleiHI on Mon Jun 24, 2013 at 07:09:52 PM PDT

      [ Parent ]

  •  I just completed my mental eval for SSDI (14+ / 0-)

    last week - and I have no idea what to expect.  I am diagnosed autistic with paranoid schizophrenia and have a long history of depression, "not fitting in at work" and have been on FMLA in the past. I have memory and concentration issues and some of the side effects of the meds accentuate those - but they make the voices and delusions more manageable.  Not gone, but less my whole experience of life.  

    My physical body is mostly ok - it's my brain that isn't.  I had my physical evaluation last month - and I have lost 20% lung function and have some balance issues - but I don't believe these will qualify me on their own.  I've lost the ability to care for myself without medication - I can do the basics as long as I'm medicated - wash, eat, clean my surroundings - but without it - not so much.

    But now I have no idea what happens next, or what to do if I am rejected as not qualified.  Without SSI and Medicaid, I can't live on my own or get the help I need to continue to be at least semi functional.  I'm scared stiff.

    And we sail and we sail and we never see land, just the rum in the bottle and a pipe in my hand...

    by Mortifyd on Sun Jun 23, 2013 at 06:15:45 PM PDT

  •  Try having a progressive inherited hearing loss (8+ / 0-)

    and asthma. I tried to get SSI and was turned down, even though I have a profound loss and diminished lung capacity. I need to get a look at the criteria and appeal..

    "Whenever the people are well-informed, they can be trusted with their own government" T. Jefferson

    by azureblue on Sun Jun 23, 2013 at 08:46:02 PM PDT

    •  I am profoundly deaf and received SSDI. (3+ / 0-)
      Recommended by:
      weck, Deejay Lyn, Cassandra Waites

      I first applied in 1987 and was rejected.  I then became a member of ALDA (Association of Late-Deafened Adults).
      They referred me to another organization, which supports
      and represents deaf or deafened people who apply for SSDI.
      I was approved and collected from 1993 until I reached 65 and then was transferred over to regular SS.
      You really need either a disability lawyer or an organization to help you.  The first time I applied, I went  on my own and it was brutal.  I had all the medical documentation and the judge, or whatever, accused me of faking it.  I grew up hearing and became gradually deaf, due to a genetic loss, sensori-neural, which is so deep, modern devices cannot measure the depth of the loss.

      If you don't stand for something, you will fall for anything - unknown

      by incognita on Mon Jun 24, 2013 at 10:47:53 AM PDT

      [ Parent ]

    •  Don't wait. (4+ / 0-)

      The time period for filing an appeal is limited. If an appeal isn't filed in time you will have to start the application process all over again. I found out the hard way.

    •  The listings for adult respiratory disorders (0+ / 0-)

      Are here

      I hope this helps.

  •  it took me 4 years to gain SSDI (8+ / 0-)

    and cost $6K in legal fees.  The problem?  Though I left teaching in 1993 and returned to full time farming from 1993-2007, when I applied for SSDI, the SSDI reps and the ALJ all claimed I was able to return to teaching though my certificates had expired in 1995 and it would take a good bit of re-education for me to be recertified.

    However they all contended that I had a duty to attempt to return to teaching and in the end, it was my gait impairment along with substantial documentation that teaching requires a good bit of ambulation as a part of expected secondary duties such as lunch patrol or bus monitoring, among others.  Even then, the ALJ seemed fixated on the issue of if I could perform the duties from a wheelchair though I am unable to sit for more than a few hours at a stretch due to multiple issues ranging from nerve damage to gout to arthritis to Chronic Pain Syndrome.

    Bottom line is even if you meet all the criteria on paper, there is still a subjective element to the assessment which must be overcome in order receive SSDI.

    On ADA, years ago during a hearing regarding public access to town meeting minutes, I was flabbergasted when the town's attorney showed up with a brochure on municipal policies regarding employment issues to substantiate the town's refusal to honor my FOIA request because I could not meet their physical requirements to receive public information

  •  I keep trying to point out to my mother that (10+ / 0-)

    no one is going to hire someone full-time who cannot work around florescent lights and certain colors and sounds, who cannot stand for more than ten minutes without severe pain or sit for more than fifteen without pain, and who has to have a week off a month for menstrual issues and who has to have a two hour nap every afternoon and go to bed on time at night and eat on a rigid schedule.

    Now, I can work a lot of life in around these restrictions, and I do. But I couldn't do a job unless it was the ONLY thing I did; if I came home and had someone lay out casual clothes for me, place food in front of me, and not ask me to do housework beyond making sure my dirty clothes hit the hamper.

    Do the housework, including cooking everything from scratch due to allergies, AND hold a job? Nope. I don't have the stamina for that.

    When you come to find how essential the comfort of a well-kept home is to the bodily strength and good conditions, to a sound mind and spirit, and useful days, you will reverence the good housekeeper as I do above artist or poet, beauty or genius.

    by Alexandra Lynch on Sun Jun 23, 2013 at 09:48:31 PM PDT

    •  Environmental limitations are difficult (1+ / 0-)
      Recommended by:
      Alexandra Lynch

      to substantiate.

      Many people cannot tolerate fluorescent lighting, perfumes, chemicals, fumes, or temperature extremes.  Conditions that become exacerbated by these factors include migraines and seizures or, like you, individuals with unique pain disorders.

      The problem is documenting the degrees of limitation in objective form.  SSA prefers documentation in medical treatment notes.  Sometimes, SSA accepts third-party statements from family or former employers.  

  •  I have an invisible disability. (10+ / 0-)

    Called Trigeminal Neuralgia. Extreme pain at the the drop of a hat. A list of triggers as long as my arm. I keep myself locked in my room. Its the only place I feel safe. The only place I can control my environment.

    But if you came to my house we could play cards and you would never know. It doesn't show. There are no visual clues.

    I would very much like to write a diary about trying to live with an incapacitating disability that no one can see.

    And the general nature of Trigeminal Neuralgia.


  •  Going through this now. (9+ / 0-)

    Have to go in to Social Security today to provide paperwork. I've heard horror stories about people with my condition taking years to get disability. On the other hand, the state agencies in MA sent me to the same medical company that does the evaluations for Social Security and that appointment lasted about ten minutes before he marked me down as disabled.

    I haven't been able to find work, or learn new skills to pursue opportunities that open up. I can't even get light unskilled labor positions as the companies can't or won't accommodate me. I hope this disability thing goes through, because I'm running out of options.

  •  It would be nice if the SSA would take actual (7+ / 0-)

    reality into consideration. The likelihood that someone is going to hire a partially disabled pharmacist for "light unskilled labor" is minimal. He will make numerous applications for jobs and be considered "overqualified" for all of them. Anybody moving from a highly skilled occupation to unskilled labor is regarded with suspicion. He will have to share with any future employer that he has a disability and this will scare the employers off although they will certainly not say it was because of his disability he was not hired. I've seen too many people enter this cycle including my brother who had so many health issues - arthritis, heart problems, then diabetes and finally depression - and was hospitalized 2-3 times a year for the last decade but was still found "able to work" a few weeks before he died. I will always believe that the stress of trying to find work he could reasonably do with his health so badly impaired contributed to his decline and death.

    Where are we going and what am I doing in this handbasket?

    by gelfling545 on Mon Jun 24, 2013 at 06:07:14 AM PDT

    •  Law prohibits it. (2+ / 0-)
      Recommended by:
      weck, Cassandra Waites
      It would be nice if the SSA would take actual reality into consideration. The likelihood that someone is going to hire...
      Legally irrelevant. This is not considered--not because SSA employees are assholes, but because the law does not allow them to consider it. If you want that law changed, lobby your member of Congress, but best of luck--the current political conventional wisdom is that Social Security disability is "too easy to get," so is being awarded to "too many" people.

      "The true strength of our nation comes not from the might of our arms or the scale of our wealth, but from the enduring power of our ideals." - Barack Obama

      by HeyMikey on Mon Jun 24, 2013 at 02:38:36 PM PDT

      [ Parent ]

  •  I can testify that SSI Disability is a huge hurdle (13+ / 0-)

    My wife got Fibromyalgia and a host of other too-strong-autoimmune things (allergy, thyroid, celiac) when she hit 30 years old.  At the time she was a highly skilled and energetic system administrator.

    She spent the next two years working off-and-on because her job was very patient with her (star performer at the time, by the end was barely able to field a few phone calls to train her replacement).   The cognitive function loss caused by the fatigue and pain made it impossible to know when she'd have energy or when she could think clearly (think of it like jet lag, all the time, plus random pain flairups forcing you to go lie down)

    Oh...and stress of any kind makes all of her symptoms worse.

    After state disability ran out and it clearly wasn't getting better, we started the SSI process.   Had I not been there to help, she would have been incapable of filling out the first application.  Not to mention all of the associated medical records and testimonials from work and doctors.

    I do my own taxes, and we have rental income, investment income, lots of different kinds of deductions, weird income from old settlements of companies we used to own stock in, etc etc.  SSI was MUCH harder than doing taxes.  It is probably more like being audited when you had not prepared for it.

    Then, after endless reviews, followups, interviews with doctors, psychiatric evaluations etc, where every single person she encountered could tell she was disabled (one person measuring cognitive ability watched her IQ literally drop over the course of an hour, while she curled up in pain trying to fill out the test), she encountered a judge that didn't believe her condition existed.  (Fibro is a cluster of symptoms, not something that has a testable marker, at least not yet.  They might have just found one)

    So he chose to believe a medical report that showed she had full range of motion (a doctor who spent 15 minutes with her...yeah, she has full range of motion until she gets tired or has random pain flare ups.  She also can't SIT IN A CHAIR fro more than a couple of hours.  But you can't get that in a 15 min test)

    He brought in his pet occupational specialist as witness, a man who ALSO doesn't believe in Fibro, ignored all the other evidence and rejected.   By this time we had a SSI lawyer (who was fantastic. It is all he does, and he knew everyone involved, had a pretty good idea that if we got that judge, this would happen)

    We appealed.  The appeal came back with the most snarky opinion from the appeals judge I've ever seen, pretty much lambasting the judge for ignoring all the other evidence.

    Then what happens, which is just brilliant logic...the SAME JUDGE gets to re-judge the case.

    So we asked him to recuse himself.  To do this my wife had to explain why in writing, why we thought he was not objective on this topic.   Took her about a week to write the request, working in 15 minute blocks, part of which was explaining that yes, she's educated and articulate if she spends days writing a two page written document, but that doesn't mean she can do any job in modern society.

    Thankfully the judge recused himself, a more rational judge saw the case and we got disability and about 6 years of back pay (the lawyer got his cut and earned every penny.  He was working for free unless we won).  

    We still have to prove she's in treatment every couple of years, which is more damn forms that...if I wasn't doing most of the work...she couldn't fill out.

    Seriously how does anybody who is either cognitively disabled get through this process without somebody able doing most of the work?   I think most people like that just lose their jobs, become homeless and die.

    Our system is heavily oriented around defeating fraud and not at all oriented on providing care for people who had bad luck...accidents or illness they had no control over.  My wife became disabled literally overnight.  She thought she had a flu.

    Nearly 15 years later....she never got better.

    •  Compelling & educational comment, greblos. This (7+ / 0-)


      Seriously how does anybody who is either cognitively disabled get through this process without somebody able doing most of the work?  I think most people like that just lose their jobs, become homeless and die.
      I've been the parent, for 16 years, of a child who was born with disability.  A genetic disability that has a long known check list of  physical, cognitive, emotional/mental and medical conditions that can manifest at any time during the life span.  

      Lifelong monitoring & interventions with varied specialists are necessary.

      Yet every single year for 16 years reams of paperwork have had to be filled out by myself & doctors showing that my child still medically qualified for The Katie Beckett Deeming Waiver (the only health insurance available to my child).  I so wanted to just scrawl on the forms-"nope, did not miraculously wake up cured"...

      My child just turned 18 & we are now in a new rabbit hole:  SSI.

      My child's current meds alone cost nearly $700 a month, has specialists every couple of months with labs, MRIs PRN etc, etc.  Medicaid is a necessity for my child's lifetime.

      Child cannot hear, speak intelligibly & IQ maxes out at 36 months.

      Folks at local SSI want my child to sign the documents.

      The very same documents used by anyone applying for SSI disability.

      Documents with the majority of questions that are not and will never be applicable to my child.

      Documents that my child cannot read or comprehend if read aloud.

      And it is my understanding if SSI is granted, that like you, I or another representative will have to prove need-forever.  Or lose SSI.

      And annually provide documentation on what the funds were used for.  Or lose them.

      I started the process years ago by attempting to learn as much as possible to avoid any problems.  Began the "process" 6 months prior to my child's 18th birth date only to be told to wait until closer to 18th birth date.  

      Have gone to local office, had 2 phone interviews & now wait in no mans land since the Deeming Waiver (medicaid) ends a age 18......

      I cannot begin to convey my appreciation & gratitude that SSDI or SSI exists.  However, with my newest educational tour into the system, I feel like punching out anyone who dares say that people do not need it and/or are gaming the system.  (And I am a tiny pacifist)

      •  worldlotus (3+ / 0-)
        Recommended by:
        worldlotus, weck, Cassandra Waites

        I'm so sorry for your frustration and pain. You need to see a lawyer specializing in guardianships and trusts for the disabled. Heaven forbid if something happened to you, where would that leave your child? I don't want to be the bearer of bad tidings, but the sooner you prepare what documents you need will relieve a lot of stress.

        I used to take care of children such as your child, and you have to have more patience than Job. God bless.

        As for the bureaucracy of SSA, I understand the need to SCREAM!! So do they. Why else do you think they have armed guards in the offices? That armed guard is also the reason they feel they can get away with treating people in such a callous manner.

        •  alice kleeman, thank you for your kind thoughts & (1+ / 0-)
          Recommended by:

          information sharing.  Attorney to create special needs trust is next on the itinerary (delayed due to surgery & recoup).

          As you know, many parents of those with disability do not know to do this-I knew only as a result of past work & lifetime of advocacy work.  Even so, it is still a daunting & emotional process.

          The maze of bureaucracy was foremost in my mind as I waited amongst people of diverse nationalities at the local SS office.  I was impressed that the office was equipped with interpreters but compassion & alarmed concern filled my heart after seeing the paperwork involved.

          I prepared self (or so I thought) for years prior to this event.  I cannot begin to imagine how difficult the process is for those who do not have the same avenues available or who have less endurance.

      •  What I find crazy making is (2+ / 0-)
        Recommended by:
        worldlotus, Deejay Lyn

        that the overall percentages are pretty good, but individual ALJs have favorable determination rates ranging from 9% to 70% or so.  Different judges in the same hearing office might find similar conditions, severity, and persistence of symptoms as either "disabled" or "not disabled" according tho their independent judgement.

        The result, no one can predict the outcome for any particular set of facts about an individual.  

        I like life more orderly than that, or at least reasonable about why the variation.

        So to me, the lack of predicability between ALJs or hearing offices can become frustrating.

      •  On proving need (2+ / 0-)
        Recommended by:
        Deejay Lyn, worldlotus

        It isn't every year, but every few years we get another request for information where you have to show that she's getting treatment from various doctors.   You aren't allowed to just give up.

        I can see how the regulations got that way, but it is a massive pain and I don't see how people who have been declared to have a disability serious enough to prevent work are expected to do the process on their own when it is the kind of thing you have to be able to do work to complete.

        It's more of the same.  If you get better, they want you off the system.  So you have to keep trying to get better, or they cut you off.

        Even if there isn't any medically recognized treatment, you still have to be trying something to get better.

    •  greblos (2+ / 0-)
      Recommended by:
      peptabysmal, weck

      You got it! That's the system in a nutshell.

  •  Thank you, Cloisterwood, (5+ / 0-)

    for the excellent explanation of both the two different disability policies and why we might be eligible for one but not the other.  I have epilepsy from a hereditary, genetic disease that has caused organic abnormalities in my brain and, since both the disorder and the resulting epilepsy are permanent, I'm on seizure medication for the rest of my life.  

    Nevertheless, since -- as greblos pointed out in his story -- the system is more focused on defeating fraud than on providing care and assistance, I wasn't sure if I would qualify for disability. I'm ok today, but that could change in an instant tomorrow, or 5 minutes from now, with just one seizure severe enough to break through the medication and cause me permanent brain damage.  (Ironically, having a seizure in the shower and hitting my head might be less problematic, since in that case, living alone, I would likely just die.)

    Trying to decipher all the bureaucratic, legalistic, legislative blather on disability just makes a dicey situation worse, as it does for most people in any number of situations. So thanks very much for explaining and clarifying this information in such user-friendly language.

  •  This is great information (1+ / 0-)
    Recommended by:

    Like you, I am functionally disabled but able to work full-time. This is very useful information for those of us who are just beginning to navigate this world, either as people with disabilities or as caregivers, friends and allies. Thank you very much!

    I wonder if your employer would consider letting you work from home? Even one or two days a week would probably make a difference in your energy level and accomplishment.

  •  Someone wanted to share their story . . . (0+ / 0-)

    but felt to "exposed" to use their own name. This is an important option for obtaining assistance with disability claims:

    When my disabilities . . . . . . made it impossible to continue employment, I first went through my private disability insurer -- essentially because it paid more and the only test was whether "I could continue working in my profession."

    I was fortunate (to the extent that anyone is fortunate to have a greedy insurance company) but my disability insurance company basically carried me through the process.  Their incentive, like most private disability insurers, is that any income I receive from SSDI, is deducted from my private insurance company's monthly disability check.  My disability insurer therefore filed all the paperwork for me and moved me through the process.

    This was critical for me because, and I fear other people have this same problem (and I have great empathy for them), I was too ill to manage my disability application on my own. The Insurance Co.'s SSDI specialist, assigned to my case, assembled all the relevant medical records, physician statements, filled out the forms for me to sign after extensive interviews, and my SSDI application was approved upon its initial submission.  

    It is a tough process and despite my educational background and my (extensive) experience dealing with government agencies, I don't know how well I could have handled the situation. Having something as seemingly straight-forward as an SSDI application become so difficult to manage myself was a painful reminder of how far my level of functioning had  deteriorated in the 4-6 years leading up to my inability to continue employment in my profession.

    •  This took courage . . . (0+ / 0-)

      . . . to initiate the process, complete the process, and share your pain.

      Someone will certainly use their knowledge to have an easier path that they would have otherwise.

      Thank you.

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