Rainbow at shoreline

The Massachusetts ME/CFS & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome) or FM (Fibromyalgia), their families and loved ones. The Massachusetts ME/CFS & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

Disability Insurance Claims: General Information

By George Thompson, Attorney-at-law, specialist in Long-term Disability Insurance

In this article, Attorney Thompson answers eighteen questions concerning filing a disability claim under a private long-term disability insurance policy.

1. What is disability insurance?

Disability insurance is privately owned insurance that pays a monthly benefit to an insured who is either disabled by an injury or sickness in his/her "own occupation," "any occupation," or a modified definition of his/her occupation. 

The insurance can be acquired in the form of an individual policy where the policyholder usually pays the premium or group insurance offered by an employer which insures an individual usually in their capacity as an employee.

 "Own occupation" insurance insures an individual against his/her ability to perform the substantial and material duties of his/her occupation, i.e. a salesman, surgeon, accountant. An individual can be disabled in his/her own occupation and still collect benefits if s/he is capable of working in a different occupation.

"Any occupation" coverage, on the other hand, pays a disability benefit if the insured is unable to work in any occupation for which s/he is suited by  age, education, status in life, income and experience. The standard is similar to that utilized by the Social Security Administration and generally requires a greater degree of impairment.

A policy with "modified occupation" language generally pays a disability benefit if one is disabled in his/her own occupation and not engaged in another occupation.

Finally, some policies have a "Change in Definition" feature ("CID") which states that after a passage of time (12, 24, 36 or 48 months), the disability standard changes from "own occupation" to "any occupation." This is a typical feature of a Group Disability Insurance policy. 

The impact of the CID is to elevate the degree of disability if one is to remain disabled and eligible for benefits after the "own occupation" period passes. In short, benefits will only continue if the insured is disabled in the "any occupation" period that follows the "own occupation" period.

2. What is ERISA?

The Employee Retirement Income Security Act ("ERISA") is federal legislation enacted by Congress in 1974. The public policy concern underlying ERISA was a concern that too many employers were abusing their responsibilities for administering benefit plans for their employees. It was also believed that the passage of exclusive federal legislation regulating employee benefits would simplify and expand employee benefit offerings since employers would be accountable to the federal government  as opposed to 50 different state insurance departments.

ERISA reserves to the federal government the exclusive right to regulate the vast majority of employee benefit plans, which typically include either pension, life, health, or disability insurance or a combination of the four.

ERISA is a complicated statute that details when an employee benefit plan is or is not subject to ERISA, claim processes, claim review standards, claim administration timelines, and exclusive and limited litigation remedies available only in Federal Court.

Unfortunately when ERISA was enacted into law there were a number of substantive areas of the legislation where Congress provided little or no guidance. Consequently the Federal Courts, including the Supreme Court, had to weigh in to "fill in the blanks." Not surprisingly, there is a lack of uniformity among the various federal circuits on the significance of certain issues, many of which have yet to be addressed by the Supreme Court.

Given the legal and technical nature of ERISA and the variance of its application from federal circuit to federal circuit, it is critical that you give serious thought to consulting an attorney who has significant disability and ERISA significance.

3. What type of information should I bring to my first meeting with an advocate?

  • A copy of the insurance policy;
  • Any forms and letters you have received from the insurance company or your employer's HR Department;
  • The names and addresses of your healthcare providers treating you for your disability condition;
  • A timeline outlining the start of the disability and your treatment dates;
  • The name and address of your employer and your supervisor/manager; names of co-workers who can verify what your job was and perhaps corroborate your decline in performance because of your disability;
  • The names of any individuals you believe could provide information in support of your claim.

4. If I am receiving disability insurance due to a workplace injury, can I also get Social Security Disability and/or Workman's Compensation Insurance?

Yes, but depending upon the language of the disability policy, the benefit amount paid under the disability policy might be offset by the amount of benefit you receive from either Social Security or Workman's Compensation.

The offset feature is a typical feature of a Group Disability policy and not as typical with an Individual Disability policy. Even when allowing offsets, the policies generally guarantee a minimum amount of monthly benefit that cannot be offset. Workman's Compensation insurance, Social Security disability and private disability insurance are not mutually exclusive. They can be collected at the same time with or without offsets.

Finally, private disability insurers may require you to sign a reimbursement agreement if your policy has an offset feature that would allow for them to collect retroactively a percentage of benefits paid to you in the past and present that may be subject to a future retroactive offset such as a delayed Social Security Disability Award.

5. Can private Disability Insurance drop my coverage after I receive Social Security Disability?

It depends upon the language in the insurance policy or insurance plan. This is not a typical feature of private insurance policies regulated by the state and sold to the general public.

It might be a provision in a self-insured plan. The "dropping of coverage" differs from the offsetting of a disability benefit because of the receipt of Social Security benefits, discussed in #3 above.

6. Can I receive disability insurance benefits when I am unemployed?

It is possible to receive benefits under an individual disability policy if one becomes disabled while unemployed. These claims are complicated given the general rule that a disability must be measured against an occupation one is engaged in at the start of disability.

There are times, however, when an individual may be laid off and job hunting or perhaps left the workforce temporarily to care for a sick loved one. In these situations, the disability insurer should look for evidence as to whether the policyholder intended to return to the occupation or had they abandoned the occupation (i.e. retired).

If the circumstances reveal that the insured intended to return to the occupation, the insurer will likely measure the disability against that occupation.

Please note that some individual disability policies may have a termination of coverage feature that provides that after a certain age, such as 65, the coverage ends if the insured is not working a specified number of hours per week.

Finally, the issue of unemployment will likely have a more dramatic effect in the context of group disability coverage, since generally group disability insurance for employees ends once they are no longer employed by the employer who provides the group coverage. This may not be applicable, however, if the group disability coverage offers a conversion benefit allowing the departing employee to convert the group coverage into individual coverage.

7. How long will private disability insurance pay if I am disabled for life?

The policy language will state whether the benefit term is for a fixed duration, i.e. 48 months or to age 65, or whether it is lifetime benefits.

If you qualify for lifetime benefits, you will be paid for the remainder of your life whether that is 34 days, 34 weeks, 34 months or 34 years.

Individual disability policies sometimes have a death or survivor benefit as well, which can be paid to your spouse or estate if you die while on claim.

8. Would I need a lawyer or advocate to handle my claim?

That is a personal decision unique to each person seeking disability benefits.

The advantage of a lawyer/advocate at the outset of the claim process is that s/he can minimize your time interacting with the insurer and obtaining all the relevant information needed to assess your claim for benefits. If s/he is well versed in insurance law, the lawyer can help you better understand your rights under the policy.

An example would be the lawyer's familiarity with ERISA and expertise in knowing that you are timely submitting a complete packet of information in support of your claim.

The downside to a lawyer/advocate at the claim stage is that you will have to pay the lawyer/advocate.

9. What public benefits may I be eligible for?

Depending upon the significance of your disability and your residence, you may qualify for Social Security disability benefits and Medicare Health coverage from the Federal government.

Some states, such as California, have a state disability insurance program as well.

10. Can I sue the insurer when I receive a denial, or must I exhaust the administration remedies offered by the plan or insurance policy?

Generally you must exhaust the administrative remedies under a Group Insurance claim unless it is apparent that an appeal would be futile given the content of the denial letter.

11. What type of information should I expect in a Denial Letter?

A thorough and balanced explanation of the relevant insurance policy provisions and applicable evidence in the claim file that led to the denial conclusion.

If the claim was denied because there was certain information that should have been submitted with the initial claim submissions, the insurer should describe the type of information that would be helpful in perfecting the claim that would allow for its payment.

If it is a group disability insurance claim, there must be ERISA Appeal rights and time-frames contained in the language.

Some state insurer departments, such as California and New Hampshire, require the insured, who is a resident of that state, to receive language advising of his/her rights to contact his/her state insurer department if s/he believes s/he has been mistreated.

Generally there is no mandated legislative right to a claim denial appeal for individual disability policies, although individual disability insurance carriers often offer an appeal.

12. What are my rights during the Administration Appeal process?

This question addresses the rights of an insured under an ERISA-governed group disability insurance policy or plan.

Generally, you have the right to receive all pertinent documents or the complete administrative record (claim file) if you ask before you submit your appeal.

You have the right to a full and fair review by a different claim examiner.

13. What initial steps should I take if I receive a Denial of Benefits?

Make sure to read and understand the letter.

Call the author of the letter if any part of it is confusing or incorrect.

Calculate your ERISA deadlines.

Request in writing that you wish to appeal the denial and you would like the insurer to send you all pertinent documents.

14. What are common reasons given for denials?

They really do vary depending on the circumstances of the claim, but ultimately the insurer has concluded that the claimant is no longer eligible for benefits.

15. What should I send with my appeal?

All the information that you believe will assist in getting the decision reversed.

16. What should I do if my disability insurer offers me a lump sum settlement?

It would be wise to consult an attorney experienced in these matters.

A lump sum settlement is not a contractual benefit. From time to time, however, an insurer may offer a lump sum to pay you to give up your claim (but keep your policy), or to give up your claim and policy.

Here are some of the possible issues, by no means exclusive, that you should address when considering a lump sum:

  • The "upside" of a lump sum settlement is that you can collect a greater amount of money now as opposed to collecting a benefit monthly for a specified period of time. You can generally return to any form of work, assuming your health permits it and there is a satisfying job awaiting you, without the need to continue to complete monthly claim forms for the insurer.


  • The "downside" is that you may be forfeiting significant contractual rights to continue your current claim or a future claim. Once you surrender your policy, you no longer have a policy to protect you in the event you are disabled again. Similarly, once you have submitted a claim and collected disability benefits with Insurance Company AA and later take a lump sum settlement from Insurance Company AA, you may not be able to satisfy the underwriting requirements to get a new disability policy with Insurance Company BB, or you might be at risk for having a future claim of the same nature denied by a different insurer if it is deemed to be a pre-existing condition.


  • You should ask the insurer how they calculated the lump sum. Is it based on an expectation that you'll recover your health in short order? Do they expect to deny the claim in the near future? Ask them what is their calculation of the Present Day Value of future benefits? What interest rate did they use? Did they discount the Present Day Value? What type of discount did they use? What is the amount of the disability claim reserve they are holding on the claim? If you have been collecting disability benefits because of a cognitive or psychological impairment associated with a brain injury, ask the insurer if they'll agree to pay a fixed sum (perhaps $2000) towards your retention of counsel to review the proposal.

Accepting a lump sum settlement is a very significant decision and must be carefully evaluated in light of your current and expected future health, your future employability, your future insurability, and the fairness of the lump sum amount.

17. What should I do if my insurer asks me if I am interested in a rehabilitation program?

Insurers view the successful participation of those they insure in a rehabilitation program as a "win-win" for both the insured and the insurer.

It's a "win" for the insured to the extent the details of the rehabilitation agreement and program allow an insured to return to a productive and satisfying career.

It's a "win" for the insurer if the insured's return to work helps the insurer to reduce or eliminate the cost of paying a claim.

The ultimate decision that you make, however, will be unique to your particular circumstances. You may want to consult with an attorney or advocate experienced in disability claims.

Here are some of the issues you should consider:

a. Does your policy provide an optional rehabilitation benefit? Confirm this with your insurer. Ask them why they are approaching you "now" with an invitation to participate in a rehabilitation program.

b. What consideration is the Insurer Company offering you to participate in the program? For example, will they continue to pay your disability benefits if you successfully complete the program? Will they pay an amount of money that helps you transition into a new career upon completing the program? In other words, would they be willing to pay you a lump sum upon successful completion, assuming you needed some "seed" money to pursue a new occupation or career?

c. Ask your insurer if there will be any negative consequence to the handling of your claim if you simply decline the invitation. Ask your insurer if they will be responsible for any injury or further exacerbation of your disability in the event you are injured during the program.

d. If you are genuinely interested, speak with your attending physician or the medical specialist treating you for your disability to see if there is any medical risk to your participation.

e. Rehabilitation programs are only limited by one's imagination, if both the insurer and insured are both motivated to make it work. Aside from traditional work-hardening programs or specific vocational/career counseling, the insured may be able to negotiate for assistance in pursuing a college or graduate degree that would redirect their career currently stymied by a disability.

18. What should I send with my appeal?

Assuming your initial denial involved an ERISA-governed disability policy, it is absolutely critical that you use the opportunity to appeal to submit a complete record (any and all documentation) supporting your claim.

The reason it is especially important to "get it right" is that under ERISA, if your denial is upheld on appeal and you still disagree with the decision, the administrative record/claim file is "closed" and you are not allowed to submit new information except in rare circumstances. Consequently, any Court that reviews the claim decision will typically be limited only to the claim file in front of the appeals examiner.

ERISA does not allow for witnesses to testify at trial and generally, new information is not allowed to be added to the claim file after an appeal has been upheld.

What you actually submit will in part be determined by the reasons provided to you as part of your denial, and the information in your claim file.

This is why it is critical that upon learning of your denial you ask the insurer for a copy of your claim file and all pertinent documents as discussed earlier. After you review the denial letter, you may want to consider calling the claim examiner and asking him or her "What type of information was missing from my claim that would allow you to approve benefits?"

Assuming your claim was denied under a policy not governed by ERISA, I'd still suggest asking the insurer for the same information.

Because of the seriousness of getting the record right on appeal, you may want to seriously consider consulting an attorney or advocate experienced with disability matters.


Social Security Disability Benefits, Fibromyalgia and CFIDS: What you don't know could be fatal to your claim!

by Scott E. Davis

Scott E. Davis, ESQ. is a Social Security and Long-term Disability Insurance attorney in Scottsdale, Arizona. The majority of his disability practice is devoted to representing individuals with FM and/or ME/CFS. Scott has extensive experience in handling FM/ME/CFS cases and does represent individuals throughout the United States. In most cases he charges a fee only if his client obtains benefits.

The following article focuses on obtaining disability status from Social Security with a diagnosis of fibromyalgia, but the advice (although from 2009) is relevant to those with a diagnosis of ME/CFS.

The American College of Rheumatology (ACR) changed the diagnosis requirements for fibromyalgia in 2010. See Diagnosis of Fibromyalgia for the new requirements. As a result, the Social Security Administration modified its requirements for the documentation of fibromyalgia as a medical impairment in 2012. See [insert link] for an update on the new ruling. 

In the article on obtaining disability with Myalgic Encephalomyelitis/Chronic Fatigue Sundrome (ME/CFS), I analogized obtaining Social Security Disability benefits based on any disease or ailment to the epic battle between David and Goliath. 

Unfortunately, obtaining disability benefits based on fibromyalgia (FM) and/or ME/CFS sometimes can be similar to David versus Godzilla. Why?. . in part due to a lack of education at the Social Security Administration (SSA) and human bias against claimants who appear to be "healthy" compared to those afflicted with a more understood and obviously disabling diagnosis. Indeed, I must confess that three years ago I had never heard of fibromyalgia.

However, the good news is FM and ME/CFS claimants can and do obtain benefits with  proper preparation of their case coupled with an understanding of how the system may view them.

Take a deep breath and relax!!! Before you call SSA to give up, please read on, as this article will give you important (maybe critical) information to use in your pursuit of disability benefits.

As a disability attorney who concentrates on representing those with FM and/or ME/CFS, I find two things interesting about my clients. Most are very educated about their disease(s) while others have never heard of a tender point. Second, almost all have great difficulty explaining to family, friends and other people (that they could care less about!) that even though they appear "healthy," in fact, the diseases have left them debilitated. Many feel as if their disease and the resulting limitations are often not taken seriously. Undoubtedly, every client has experienced the look of disbelief and a raised eyebrow from another person when trying to tell him or her the diseases have literally ruined his/her life.

Thus, similar to the real world, it is not surprising that at the SSA the problems of education and bias can be alive and well. This reality is of paramount importance.  Why? Because it should dictate how one proves he/she is disabled. Please understand I am not saying SSA discriminates, intentional or otherwise, against FM and/or ME/CFS claimants; but rather that your claim (especially if you are under 50 years old) may be viewed by SSA or an administrative law judge (ALJ) with a raised eyebrow.

FM and/or ME/CFS are no strangers to SSA and ALJs who decide whether you are disabled; however, that doesn't mean they understand or appreciate the diseases.

In what may be considered the landmark FM disability case, Preston v. Secretary of Health and Human Services, 854 F.2d 815 (6th Cir. 1988), a Federal Court of Appeal unknowingly provided a framework within which SSA and ALJs should evaluate FM (and logically ME/CFS) disability claims.

In May 1997, nine years after working at bureaucratic breakneck speed, a Regional Chief Judge issued a memorandum to other ALJs which provided a framework to follow at a disability hearing before a diagnosis of FM is accepted. Although the following will focus on FM, I believe it can also apply to ME/CFS. Ignoring these factors could be fatal to your claim.

1. Was the diagnosis made by a rheumatologist or other specialist familiar with FM?

I am always surprised (and skeptical) when a person calls or comes to meet with me and says s/he has FM and/or ME/CFS, but it was not a rheumatologist or other specialist who made the diagnosis. Other medical doctors can and do make the diagnosis of FM, but many use the terms FM/CFS generically and more as a description of a patients' symptoms rather than making the diagnosis following the American College of Rheumatology's (ACR) 1990 Criteria for Fibromyalgia [which has now changed as of 2010—Ed] or using the CFS1994 Centers for Disease Control (CDC) criteria.

If you learn one piece of information from this article, let it be this: It is critical your diagnosis is either made or confirmed by a rheumatologist or specialist.

If not, you risk having SSA and/or an ALJ rejecting the diagnosis altogether, which could be fatal to your claim. Whether or not you (or your diagnosing doctor) agree with SSA's position, it is senseless to try to fight the system. Addressing this issue is always my first priority in representing a FM/CFIDS client.

Second, if a rheumatologist has not made the diagnosis, find one (a.s.a.p.!) who is board-certified and sympathetic to your diagnosis and disability claim.

Eventually, you or your attorney will need to obtain opinions from him/her regarding how the diagnosis was made along with your inability to work. An unsupportive and/or uncooperative rheumatologist (or any treating physician for that matter!) can create real and sometimes insurmountable obstacles to winning your case. Why? Because you can bet SSA will  have its own doctor who will tell the ALJ you are able to work. 

How do you find a supportive doctor? FM/CFIDS support groups are a good place to find a referral.

2. Has the claimant's physician(s) systematically attempted to eliminate other diseases before making the diagnosis of FM?

A frequently heard comment made by non-FM specialists, SSA case workers and even federal courts is that "FM is a diagnosis made by exclusion of other diseases." Of course, the implication is that doctors really don't know how to diagnose FM and that somehow invalidates the fact the disease exists. Such a belief shows unfamiliarity with the ACR 1990 [now ACR 2010—Ed.] criteria for diagnosis.

However, it reinforces why a specialist should make the diagnosis after a physical exam (finding and documenting tender points) and blood work excludes other rheumatic diseases which may share symptoms with or mimic FM/CFIDS. That process provides validity to the diagnosis.

3. Are the patient's complaints are typical for the disease?

This question is usually answered by reviewing the patient's medical records and comparing them to the ACR criteria. Hopefully, the medical records provide detail regarding the patient's symptoms or complaints. FM/CFIDS specialists almost always document the defining symptoms. 

For FM patients it is also critical that a physical examination was performed confirming the existence and location of the classic tender points [and now the Widespread Pain Index and the Severity Scale of Symptom scores—Ed.]. Without documentation, the diagnosis may be subject to attack.

4. Has the claimant been referred to physical therapy or a pain clinic for treatment? Has pain medication been prescribed for mild or severe pain and has the  claimant received pain relief through injections into focal tender points?

This is the "exhaustion of remedies requirement." 

I always counsel clients to undergo and at least try any treatment the specialist prescribes, including non-traditional treatment.  Why? Because you do not want to be at a hearing before an ALJ who is wondering whether your condition would be as severe if you had followed your own doctors' instructions.

Moreover, the SSA's doctor will usually tell the ALJ that your symptoms would improve (of course, allowing you to work) if you would undergo some type of treatment. Don't give the ALJ an open door to deny your claim.

Exhausting each type of prescribed treatment is good for your health and your disability case. After doing so, your testimony will be more credible because nothing exists (including an injection!) to alleviate the severity of your symptoms. Moreover, the severity of your condition will be supported by the fact that you have tried everything to find relief.

Trying to stay within the framework provided by the Preston case should increase your odds of winning and avoid any unfortunate surprises.

Additional tips to keep in mind

Involve your treating physician! Tell your doctor as soon as possible you have filed a disability claim. If s/he is lukewarm to the idea, try to find another doctor. Unfortunately, there are many doctors who could care less about a patient's legal issues. Do not get stuck with one! As an attorney, nothing is more frustrating than a doctor with no backbone or worse, s/he refuses to be involved at all.

Medical records can be your best or worst friend! It is your job to be a very detailed historian with your doctor regarding the severity, frequency and nature of your pain, fatigue and other symptoms.

I tell clients to convey information regarding pain, fatigue, sleeplessness, flare ups, days spent in bed, inability to do simple daily activities and brain fog problems. Tell the doctor you want the information in your records.

Hire an attorney who has experience handling FM/CFIDS cases!

During initial meetings with FM/CFIDS clients I sometimes say to myself  "If I didn't know better, I'd say this 40 year old woman looks perfectly capable of working!." It is only through an understanding of the diseases and talking to clients that I realize they will pay for the trip to my office for the next couple of days! Through understanding comes compassion and the ability to convey the effect the diseases have on a client's life to SSA or a judge. 

Your attorney should at least be familiar with the 1990 ACR [2010 ACR—Ed.] and/or 1994 CDC criteria and be able to talk intelligently with your doctor.

Remember: people obtain disability benefits every day based on FM/CFIDS. Do not quit! Keep fighting! Use this article as the cornerstone to preparing and hopefully winning your case.


See the article " Obtaining Disability with CFS." 

Obtaining Social Security Disability with CFS

by Scott E. Davis

Scott E. Davis, ESQ. is a Social Security and Long-term Disability insurance attorney in Scottsdale, Arizona. The majority of his disability practice is devoted to representing individuals with fibromyalgia (FM) and/or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Scott has extensive experience in handling FM/CFIDS cases and does represent individuals throughout the United States. In most cases he charges a fee only if his client obtains benefits.

In this 2009 article, Attorney Davis refers to ME/CFS as the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). The article mentions the 1999 Social Security Ruling SSR 99-2, which was superceded in 2014 by SSR 14-1p “Titles II and XVI: Social Security Rulings: Evaluating Claims Involving Chronic Fatigue Syndrome.” While the advice in this article is still germane, you should also read Ken Casanova's detailed article "Major 2014 Social Security Ruling Establishes New Standards for Documenting ME/CFS Social Security Disability Claims/Reviews." 

Battling the Social Security Administration

Anyone who has gone to battle with the Social Security Administration in an attempt to obtain disability benefits knows how frustrating that exercise can be. Those individuals with a primary diagnosis of Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), have been especially exasperated due to the arbitrary nature and lack of uniformity of decision making by the Administration. Take heart, help has arrived!

Like the cavalry charging over the hill, Social Security Ruling SSR 99-2p can help save the day. Or, if the claim was not prepared for battle from its inception, can seal its fate.

On April 30, 1999, the Social Security Administration published Social Security Ruling 99-2p: Title II and XVI: Evaluating Cases Involving Chronic Fatigue Syndrome. This ruling "ensures that all adjudicators will use the same policies and procedures in evaluating disability claims involving CFS, and provides a consolidated statement of these policies and procedures."

The Ruling has removed the discretionary and capricious decision making that had been the modus operandi of the Administration when dealing with the Chronic Fatigue Syndrome. The Ruling details several examples of medical signs and laboratory findings which, for purposes of Social Security Disability, establish the existence of a medically determinable impairment "for individuals with CFS."

The same guidelines that can be used to help win a claim provides a blueprint for the Administration to deny a claim as well. Properly documenting your case, always the hallmark of winning a Social Security Disability case, has become that much more important

Obtaining Disability Benefits. . .David versus Goliath?

Remember the epic battle between David and Goliath? On paper, David clearly had no chance to win. Fortunately his heart and soul did not know it—and with determination, persistence and divine intervention he prevailed! Ever wonder what might have happened if he was aware of his predicament? Would he have fought or run the other way?

Every day at the Social Security Administration (SSA), seemingly epic battles between disability claimants and SSA  are fought. The bounty?  Disability  benefits.

The battle unfolds like this: you become unable to work due to a physical and/or mental illness and apply  for disability benefits. After all, you've paid into the system all these years for this exact situation. Heck, even your doctor says you can't work. You figure it is simply a matter of completing paperwork and time until you begin receiving benefits. . .but for now you are starting to experience financial problems.

As the months go by without an answer, you reassure yourself this must be a simple case and the delay is "due to government bureaucracy." After several more months your frustration grows, you call SSA and get no answers, or worse, the ones you get are all different! The bureaucrats you spoke with were rude and put off  by your phone call. You remind yourself SSA is on your side. Its job is to help people like yourself by  paying disability benefits, right?  But. . .you begin to feel like David.

The Big Day. . .

You finally receive an envelope from SSA, tear it open to find a benefit check and instead read: "We have Denied your claim for disability benefits as our trained staff and medical doctors have determined you are not disabled under our laws."

You're angered, frustrated, scared, intimidated and now overwhelmed by the thought of fighting Goliath. . .the Federal Government.

Pages into the decision it mentions appeal rights, but the decision seemed so final and left you with no hope. You do not know the law, the system and even if it is worth it or how to fight. Your alone and defeated. . .exactly how SSA wants you to feel!

As a disability attorney I meet with clients everyday who tell me this same story. Fortunately, those clients took the bold step of appealing the denial and fighting for benefits.

What should you do? Persevere!

75% of all disability applicants initially will be denied benefits! Half of those denied will give up and not appeal the denial! However, 53% of the applicants who persevere to a hearing before an Administrative Law Judge (ALJ) obtain benefits!

Now you understand how the system works—it is designed to deny benefits to as many people as  possible. SSA denies initial applications because it knows 50% of the people will give up and not appeal! But for those who persevere and appeal the denials, the majority is eventually granted benefits.

Understanding the system

1.  Initial application—Every claim for disability benefits begins with the initial application. 75% of all applicants are denied at this step. SSA looks for a reason to deny benefits. The decision is based on forms you completed and medical records—you won't meet with anyone involved in making the decision. It is surprising when anyone wins at this step. Don't quit—you must appeal a denial within 60 days.

2.  Reconsideration—The second step in the system, but the results are worse.  82% of all applicants are denied at this level. SSA reviews your file again and issues a denial. Unfortunately it may take months to receive. At this step, only 50% of the original applicants are still in the system, the rest gave up. Appeal the denial immediately.

Up to this point in the system you have been a Social Security number and a file.

3.  Request for Hearing before Administrative Law Judge—Congratulations! You have persevered in the system and now have a good chance to win benefits. 53% of all claimants win at this stage!

Why? Primarily because your claim is entitled to a de novo or new review by a Judge who knows the law and does not work for SSA. Also, you get to testify before the Judge about your inability to work and s/he assesses your credibility. Finally, hopefully you have obtained opinions from your doctors about your inability to work.

You must win your case at the hearing stage; if you do not, you can appeal but your claim will be tied up perhaps for years with the likelihood of success dramatically reduced.

Increase your odds of winning

Now that you have an understanding of how the system works, here are some tips on how you can  maximize your chance for success.

1.  Appeal every Denial—It bears repeating, DO NOT QUIT after receiving a denial. Now you understand you must get to a hearing. Up to that point SSA and the odds are overwhelmingly against you—receiving a denial may be cause to celebrate because you're a step closer to a hearing.

2.  Retain a Disability Attorney—Retaining an attorney who specializes in disability law should substantially increase your odds of winning. Most claimants have no idea what they need to prove to win their case. Practically all disability attorneys work on a contingency fee—you only pay a fee if you win your case. Also, Federal law sets the maximum amount the fee can be in your case. An attorney will develop your case by obtaining the necessary medical and vocational records and opinions from your doctors that are critical in proving disability.

3.  Completing Social Security Forms—You will complete a dizzying array of forms requesting all sorts of information. Be honest and very brief when completing forms. You won't win your case with the information you give on the forms but you could lose it.

4.  Involve your Treating Physician—Your treating physician is critical to success. Judges give a treating physician's opinion regarding a patient's disability tremendous weight. If your physician is not sympathetic to your claim you may want to make a change to one who is.

The purpose of this article is to convey hope that you can win your case and obtain benefits with perseverance and knowledge of the system. Please do not give up. . . appeal and keep fighting!

See the article "Social Security Disability Benefits, Fibromyalgia and CFIDS: What you don't know could be fatal to your claim!

Notice about names

The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS. 

Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.