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Ehlers Danlos Syndrome and Disability Benefits from the Social Security Administration

Shoshana Pehowic, Esq. O’Connor Acciani & Levy Co., LPA Cincinnati, Ohio

Presented at the 2012 Learning Conference of the Ehlers Danlos National Foundation


Ehlers Danlos Syndrome and Disability Benefits

Shoshana Pehowic, Esq.

Introduction to the Social Security Administration’s Disability Programs I. Definition of Disability A. Adults: 1. SSA’s language: “The inability to engage in any substantial gainful activity (SGA) by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.” 2. Translation: You must be unable to perform any kind of competitive work on a sustained basis for at least 12 full months (or you are expected to die within 12 months). B. Children: 1. SSA’s language: “A child under age 18 will be considered disabled if he or she has a medically determinable physical or mental impairment or combination of impairments that causes marked and severe functional limitations, and that can be expected to cause death or that has lasted or can be expected to last for a continuous period of not less than 12 months.” 2. Translation: A child must have at least one condition which has been diagnosed and which is severe enough to interfere with the child’s ability to function at home, in school, and/or in public settings to a “marked” or “extreme” degree, and that limitation must exist for at least 12 months. II. Types of SSA disability benefits available to adults A. Title II benefits 1. Social Security Disability (SSD), also known as Disability Insurance Benefits (DIB) or Title II 2. Disabled Adult Child 3. Disabled Widow(er)’s Benefits B. Title XVI benefits = Supplemental Security Income (SSI) III. Types of SSA disability benefits available to children = SSI IV. What are the main differences between SSD and SSI benefits? A. SSD payments begin five months after your established date of disability, whereas SSI benefits begin in the first full month after your SSI application date or established date of disability (whichever is last). The stated reason for the SSD waiting period for benefits is to ensure that your disability is going to last, but since the definition of disability requires that the inability to work substantially lasts a full 12 months, it seems clear that the real reason for the waiting period is merely to save the government money. There is no way to avoid the waiting period. B. SSD benefits are associated with Medicare health insurance, which does not begin until 29 months after your established onset date of disability (your “first month of eligibility”

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Ehlers Danlos Syndrome and Disability Benefits

Shoshana Pehowic, Esq.

plus 2 years), whereas SSI benefits are associated with Medicaid health insurance, which is available from the time disability is found to have begun. Medicare is managed by the federal government, and pays only a portion of your health care costs, while Medicaid is managed by the individual states and covers almost all of your health care costs. *If you are awarded SSI benefits, you must apply separately for Medicaid through your state’s welfare office (often known as the “Department of Job & Family Services” or something similar). C. SSD is based on your earnings record, while SSI is based on financial need 1. To qualify for SSD, you have to have earned a certain number of work credits (toward your retirement benefits) within a certain time frame. Your eligibility for SSD benefits “expires” roughly five years after you stop working regularly and substantially. You must prove that you became “disabled” before that expiration date in order to qualify for SSD benefits. Your household income is irrelevant to your eligibility for SSD benefits. One exception: Bureau of Workers’ Compensation benefits, which may be offset if your combined BWC and SSD income is above a certain limit (calculated for each person based on earnings records). The amount of your monthly check depends upon your earnings when you were still working. The calculation is complicated, but generally speaking, the Social Security Administration looks at the prior 10 years of earnings, chooses the 5 years with the highest earnings, averages them, and modifies the amount to come up with the monthly amount (known as the “PIA,” or personal income amount). The PIA does increase with the cost of living. 2. To qualify for SSI, your household income must be below a certain level, and you must have no more than a certain amount of assets and resources ($2,000 for a single person or $3000 for a married couple). The house you live in and your first car do not count against you for asset purposes. Any account which you can access, even if you have to take a penalty (such as withdrawing money from a retirement account), will be counted against you, and you may have to spend those monies before you will financially qualify for SSI. The maximum amount possible for a monthly check is determined by federal law, and generally increases each year with the cost of living. However, this maximum can be reduced by any countable income deemed to the disabled person (this most often occurs when another person in the household brings in income above a certain limit, or if someone else pays for your room and board (thereby reducing your “need” in comparison to those who do not have that assistance). People who live in a nursing home or group home which is paid for by government funds (such as Medicaid or Medicare) will only receive $30 per month, with the remainder of their SSI check going to the organization which cares for them. V. Why should I apply for disability benefits? A. The obvious answer is to increase your household income, which has not only practical benefits, but also can increase one’s feelings of self-worth. Most people’s identities are tied closely to their jobs, and when they can no longer work, they do not know what to do with themselves. Even worse, they feel they are no longer contributing to the family (they are unable to see the non-monetary items they provide to the family), and depression starts or worsens. Obtaining a disability benefit allows people to feel that they are once

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Ehlers Danlos Syndrome and Disability Benefits

Shoshana Pehowic, Esq.

again contributing, and that they are not a “burden” to their families. B. It also provides people with health insurance, which for many people is even more important to them than the monthly amount they will obtain from disability benefits. 1. SSD benefits provide a person with Medicare Health Insurance, which is what the elderly obtain at age 65. Unfortunately, Medicare does not start until twenty-nine months after the established date of disability onset (i.e., two years after the first month of entitlement, when the person is first due a disability check). 2. SSI benefits allow a person to be eligible for Medicaid Health Insurance, which is a needs-based program paid for by the federal government, but it is managed by each state, so the rules for eligibility for Medicaid vary from state to state. If you are found disabled under SSI, you usually have to file a separate application with your county’s welfare office (known, for example, as the “Department of Job and Family Services” in Ohio and the “Cabinet of Job and Family Services” in Kentucky). C. Being considered “disabled” by the Social Security Administration allows a person to more easily qualify for disability benefits in other government programs. For example, there is a program for having one’s federal student loans forgiven for those who are permanently disabled. It is sometimes also easier to prove disability to the Veterans’ Administration after a person has shown that he or she meets the qualifications of disability as defined by the Social Security Administration. VI. What might be some drawbacks to applying for disability benefits? A. Social stigma B. Limitations on earnings for part-time work C. The very long wait for being determined disabled: the vast majority of people are turned down at the initial level of application (~75% nationwide), and even more are turned down at the reconsideration level of application (over 90% nationwide), yet approximately 70% of the people denied at those levels ultimately obtain their disability benefits from an administrative law judge (ALJ) at the hearing stage.1 It still takes, on average, 4-6 months at the initial level, another 2-6 months at the reconsideration level, and an additional 10-18 months to get a hearing. Most ALJs make their decisions within several months after a hearing, but if the ALJ wants more information or if an expert needs to be consulted, there may be second and even third hearings before the ALJ issues a decision. Most people cannot afford to survive without significant income during the long period of time it takes for a final decision to be made on their cases. Unfortunately, some people lose their homes, and others even enter into divorce, while waiting for a favorable decision. The long waiting time is also quite demoralizing and discouraging, which puts added strain on a person’s already fragile mental health.

1

See SSA’s “Annual Statistical Report on the Social Security Disability Insurance Program, 1999-2009,” found at http://www.ssa.gov/policy/docs/statcomps/di_asr/2010/sect04.html. Page 3


Ehlers Danlos Syndrome and Disability Benefits VII.

Shoshana Pehowic, Esq.

What can be done to make the process easier and more likely to be successful?

A. Obtain regular treatment for each medical impairment, preferably by a specialist in the relevant field.2 For example, a person with a psychological impairment should treat with a mental health professional (e.g., a counselor/therapist, psychologist, or psychiatrist), and a person with joint problems should consult with an orthopedist. The SSA assumes that a person will seek out all possible treatments for an impairment which is severe enough to be disabling. Thus, SSA also assumes that a person who is merely managing his or her conditions with visits to a family doctor, and who is not seeing a specialist, likely does not have problems which are severe enough to be disabling. If there is truly no possibility of treating with a specialist for a particular condition, the family doctor should at least document in his or her progress notes the fact that treatment by a specialist is needed, and that attempts to obtain that treatment have been unsuccessful for reasons beyond the control of the patient. B. Keep a diary or log of any conditions which cause episodic problems (e.g., seizures, severe headaches, asthma attacks, gout attacks, etc.). Information to record includes the date of the incident, the type of incident, how long it lasted, and (if appropriate) how long it took to be able to baseline functional ability. For example, a person may have a convulsive seizure which lasts three minutes, followed by a recovery period of one hour, and resulting muscle pain and fatigue which prevents return to baseline function for another twelve hours. A person with attacks of gout might record the date the attack began, the joint affected by the attack, any new functional limitations (e.g., “had to use crutches while right ankle was affected by an attack”), and the date it stopped. Bring the log to each appointment with the relevant physician, so that the log can be incorporated into the treatment plan. When submitting medical records, submit to SSA a copy of the log, and periodically submit updates from the log to SSA. That way, there will be a “contemporaneous record” of the frequency of the attacks. C. Break any “bad habits” you may have: 1. The Social Security Administration has a strong policy against awarding disability benefits to people who abuse drugs or alcohol. The exception is for those people who would remain disabled even if they stopped all use of drugs or alcohol. For example, a person who is paralyzed below the neck and who suffers from alcoholism will be given disability benefits because he is disabled solely because of his paralysis: even if he never drank alcohol again for the rest of his life, he would not regain the ability to work. In those situations, the SSA will insist that he have a “representative payee” who will control his benefits for him. On the other hand, if a person has a disability which is made worse by the use of drugs or alcohol, and if the SSA finds that the person only meets the medical definition of disability while the effects of the drugs or alcohol are part of the equation, then the SSA will not award benefits. 2. Therefore, you should not use any illegal drugs (even marijuana) and should not drink alcohol to excess. You should also be careful to follow the directions for your prescription medications, and take only the amount recommended. The SSA will 2

See the other enclosed documents for ideas about obtaining more intensive treatment and/or medications even without health insurance. Page 4


Ehlers Danlos Syndrome and Disability Benefits

Shoshana Pehowic, Esq.

consider it a red flag if you tend to run out of your medications early or if you try to get controlled medications from multiple medical providers at the same time (it is considered “drug-seeking” behavior, which can be a sign of prescription drug abuse). 3. Likewise, you should quit smoking, especially if you are alleging disability from a breathing impairment or if you are alleging that you cannot afford to visit doctors or buy your medications. In quite a few of my cases, administrative law judges have pointed out that the claimant was spending a considerable amount of money on cigarettes, which could have been used to pay for an office visit co-pay or for a medication refill. The administrative law judges assume that your breathing impairment will improve if you stop smoking. D. Do not be afraid to ask for help! Social Security Regulations are very complex, and the average person is not able to successfully represent her own case. Attorneys and nonattorney representatives who are knowledgeable about Social Security law are available to help, and it is at no out-of-pocket cost to the client. 1. Instead, attorneys and representatives use “contingent fee contracts,” whereby the attorney or representative is entitled to 25% of any back pay3 a claimant may win (but no more than $6,000). If disability is not awarded, or if there is no back pay, the attorney or representative does not receive a fee. 2. An attorney or representative is entitled to ask for reimbursement of any costs (such as paying for medical records or a doctor’s opinion), and a few attorneys or representatives will also ask to be repaid for the cost of copies and postage. Most of the time, these costs are small, and as a general rule, the attorney will not ask for reimbursement until the case is over. 3. It is very important to find an attorney or representative who is experienced in Social Security disability cases, and a local attorney will be more familiar with the medical providers and administrative law judges in your area. The National Organization of Social Security Claimants’ Representatives (NOSSCR) has an attorney referral service with information on attorneys and representatives across the country. For more information about the referral service, visit their website at www.nosscr.org or call 800-431-2804.

3

Back pay is the money paid to a claimant as reimbursement for the benefits owed for prior years. For example, if a person applied for disability benefits in 2010, but SSA did not make a favorable decision until 2012, and if SSA found that his disability began in 2009, then the person would be entitled to back pay for benefits owed from 2009 through 2011 and into 2012. Page 5


Ehlers Danlos Syndrome and Disability Benefits

Shoshana Pehowic, Esq.

Theories for Proving Disability to the Social Security Administration There are two main ways to prove medical disability: 1) by proving that a person’s impairments “meet” or “equal” the criteria of a “Listing of Impairments,” or 2) by proving that a person is unable to sustain full-time competitive work at any level of exertion (residual functional capacity, or RFC). I. Listings of Impairments: A list of diagnoses, with certain criteria for severity for each diagnosis. These are organized under body system (e.g., Section 1.00 relates to orthopedic impairments, Section 3.00 relates to pulmonary impairments, and Section 11.00 relates to neurological impairments). A. THERE IS NO LISTING OF IMPAIRMENTS SPECIFICALLY FOR EHLERS DANLOS SYNDROME. B. While Section 14.00 mentions “connective tissue” diseases, it is referring to autoimmune connective tissue diseases, such as rheumatoid arthritis, lupus, or other forms of inflammatory arthritis. Ehlers Danlos Syndrome (EDS) does affect a person’s connective tissue, but does so at a cellular level, and is congenital (a person is born with the condition), rather than acquired (the condition develops later in life). This is true even though EDS is a progressive condition, and even though a person may not be disabled by EDS until later in life. C. Instead of focusing on Section 14.00, you should consider the Listings which correspond to whichever of your body systems are most affected by EDS. For some people, that may be the orthopedic Listings in Section 1.00. For others, it might be the cardiac Listings in Section 4.00, or the neurologic Listings in Section 11.00. Even less obvious ones may apply, such as the one pertaining to the digestive system (Section 5.00), as, for example, in a person who has gastroparesis. II. Residual Functional Capacity (RFC): When considering how each impairment limits a person, one looks at what the person can still do, despite those impairments. If a person can do any type of “substantial gainful activity” (SGA), i.e., earn more than $1,010 per month in 2012 before any taxes are taken out, then the person is not “disabled.” It does not matter whether the job is something that the person has never done before, or that it does not pay enough; as long as the person is medically capable of performing the job, the person is not disabled. A. Obviously, the hardest part is to prove that you cannot even do a sit-down job on a fulltime basis. The Social Security Administration says that there are a number of “unskilled” sit-down jobs which can be performed even while alternating sitting and standing (such as for people who cannot sit long without pain and have to stand briefly to stretch). As a person grows older, (ages 50 and above), the standard for disability relaxes slightly (this is based on something known as the “Grids”). B. The ideal documentation of a person’s RFC is an opinion statement from the person’s treating physician, but only when that opinion statement is well-supported by objective medical findings and test results. The SSA is not bound by the opinion of a treating physician, and can disregard that opinion when it believes that the opinion is not wellsupported by evidence or if it is inconsistent with the treatment notes of that physician or

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Ehlers Danlos Syndrome and Disability Benefits

Shoshana Pehowic, Esq.

of others. The SSA can also disregard the doctor’s statements if it believes there are inconsistencies between the physician’s opinion and the person’s statements of activities of daily living or other functional abilities.

Potential Theories of Disability in EDS Patients I have included this list so that you will have a starting point for organizing your own “theory of disability” and so that you will perhaps recognize other theories of disability which you may not have realized could apply to you. I. Orthopedic A. Generalized arthritis B. Recurrent dislocations and subluxations leading to “inability to ambulate effectively”4 and/or “inability to sustain effective fine and gross manipulation”5 with the upper extremities C. Chronic Pain II. Pulmonary A. Asthma/Reactive-Airway Disease B. Collapse (even only intermittent) of the Small Airways III. Gastro-Intestinal A. GERD (gastro-esophageal reflux disease) B. Constipation and/or Diarrhea, often lumped under the title of “Irritable Bowel Syndrome,” but often the result of too much stretching of the bowel or stomach due to EDS C. Gastroparesis and other motility disorders D. TMJ and other jaw-related problems, which affect not only eating, but also speech IV. Cardiac and Neurologic (particularly the effects of Autonomic Nervous System Dysfunction) A. Palpitations and other arrhythmias B. POTS, Orthostatic Hypotension, Neurocardiogenic Syncope, etc. C. Generalized Fatigue D. Intolerance to Temperature Changes or Increased Activity Levels V. Blood Vessel and Tissue Fragility (even in those EDS patients who do not have the vascular form of the disease) A. Frequent bruising and easy scarring, which can at times be limiting in and of itself B. DVTs caused by blood pooling in stretched vessels and/or concomitant blood-clotting disorders C. Very poor intravenous (IV) access, which can lead to complications in the hospital and surgical settings D. Recurrent abdominal hernias, often requiring multiple, or failed, surgical procedures E. Pelvic Floor Prolapse, causing chronic pelvic pain, incontinence, and other issues which make it difficult to sit, stand, or walk for extended periods of time 4 5

This is a specific legal term found in the Listings of Impairments. This is another specific legal term found in the Listings of Impairments. Page 7


Ehlers Danlos Syndrome and Disability Benefits

Shoshana Pehowic, Esq.

VI. Neurological and Psychological A. Depression and/or Anxiety resulting from chronic illness B. ADD/ADHD and other impairments of executive function (which may result from functional Chiari malformation or other hidden disorders) C. “Clumsiness” and Tremors D. Neuropathies from Pinched Nerves E. Cranio-Cervical Instability and/or Atlanto-Axial Instability, leading to varying types of vague neurological symptoms which may come and go

Ways to Convince the SSA of Your Disability I. Ask your physicians to help you document your disability: A. Make a list of each of the problems you are currently dealing with (e.g., headaches, right knee pain, heart palpitations) and have the doctor’s staff copy that to your file for each office visit. The doctor need not address each of the problems at every visit (and most likely will refuse to do so), but it is important to document when a condition first shows up and that it continues to persist over time. B. Ask your doctor to do a brief physical examination at each doctor’s appointment and document all positive findings, even if they are findings that you have had for many years. Also be sure to ask your doctor to avoid using default language in the medical records regarding physical examinations: it is common these days for electronic medical records to include default “normal” physical examinations, and those are included in a medical record unless the doctor takes action to remove them. These “false negative” examination results have been the downfall of numerous disability claims. Explain the importance of ensuring that your records are accurate every time. II. Thoroughly describe how your impairments interfere with your activities of daily living: A. First consider each of your impairments, and then describe how you are functionally limited by each of them. For example, shoulder pain obviously limits your ability to raise your arm in certain directions, but it may also limit your ability to brush and wash your hair, put on certain types of clothing, cook, or carry groceries. B. The questionnaires sent to you by the SSA to describe your functional limitations and your symptoms are worded very simply, and do not ask for sufficient detail. Completing these questionnaires in a detailed but focused manner is extremely important in explaining how EDS affects you and creates disability in you. C. The questionnaires will ask whether you have any problems with things such as bathing, dressing, feeding yourself, shaving, toileting, etc. Most people simply answer “no” without thinking about how they have to change the ways in which they do things, or how their energy level limits them. For example, many people with EDS have problems with their autonomic nervous systems such as POTS or orthostatic hypotension, which makes something as simple as taking a shower exhausting. Therefore, under the question about bathing and showering, it would be helpful to write something like “I become very tired during a shower and need to rest in a chair or bed for at least 20-30 minutes

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Ehlers Danlos Syndrome and Disability Benefits

Shoshana Pehowic, Esq.

afterward before I can dress and go on with my day.” The questionnaires will also ask about a person’s ability to perform various chores: do you wash dishes, do you mow the lawn, etc., or will ask you to describe what you do in an average day. Most people simply list the various things they might do in an average day, without clarifying that not all of those things are done on each day. D. Consider the difference between: “I eat breakfast, wash dishes, walk kids to school, watch TV, make lunch, …”

“Some mornings I feel well enough to eat breakfast. A few days per week I might put some dishes in the dishwasher. I stand at the door and watch my children walk to the bus stop at the corner. I may watch TV after that, but I often fall asleep in front of the TV and have trouble focusing on what I’m watching. I may make a sandwich for lunch when I’m having a good day. …”

III. Be compliant with doctors’ orders and with medications as much as possible! There are ways to continue to receive treatment even if you do not have health insurance: A. If you are having trouble affording a medication or a doctor’s co-pay, make sure you explain that to the doctor, by telephone if necessary, and ask the doctor to document this in your chart. That way, even if you cannot obtain the medication, the chart shows that you did not simply refuse to take the medication, but that you tried and were unable to obtain it. 1. Many large grocery stores/pharmacy chains (e.g., Wal-Mart, Target, Kroger) have a list of generic medications which cost very little money, usually $3 or $4 per month. Ask your doctor whether it is possible to switch to medications on those lists. Check each of the lists for the stores available in your area, since some stores have medications the others may not. 2. Other pharmacies may have discount card programs for medications - ask a pharmacist for information about any available programs. 3. The pharmaceutical companies which make some of the more popular, newer medications have programs by which a person can obtain the medications for free, if the medication is not covered under the person’s existing health insurance coverage (if any) and if the person’s income is low enough. Try www.NeedyMeds.org and other similar websites for information on such programs. B. If your household income is low enough, you may qualify for Medicaid, which is government health insurance managed by the states. Children have the greatest ability to obtain Medicaid, even at higher levels of income, and adults who have minor children in the household may also be able to obtain Medicaid simply due to having the children in the household. However, nearly all states have a disability program for Medicaid, separate from the Aid to Needy Children programs already discussed, and you may need to explain to the welfare officer taking the application that you want to be considered under that standard. Most states will make their own investigation and determination about whether you meet the criteria for disability, and may even send you to one of their Page 9


Ehlers Danlos Syndrome and Disability Benefits

Shoshana Pehowic, Esq.

doctors for an examination. However, other states (such as Kentucky) do not even allow an application to be made for disability Medicaid until after SSA has determined that the person meets the medical definition of “disabled.” If you are denied Medicaid benefits, you should appeal the decision and/or reapply periodically as necessary, until you obtain Medicaid. New sources of funding might be found for your county which relaxes the standards, or you may have a new medical record which now includes the proof they needed to make the determination in your favor. C. Larger cities with teaching hospitals often have outpatient clinics directly associated with the hospitals, and people without health insurance can qualify for services in such clinics at no cost or low cost, depending upon their financial need. Any hospital which receives federal funding (which is nearly every hospital) must not turn a patient away until the patient is stabilized, regardless of the ability to pay for medical care. For that reason, an uninsured person must be treated by an emergency room, at least to the point that the person is medically stabilized and is able to be released. If you cannot afford your emergency room bill, contact the financial counselors at the hospital. They can walk you through the application process for this waiver of hospital bills. If you qualify for waiver of the emergency room bills, you will likely also qualify for services in the outpatient clinics discussed above. Please note that the private companies which work with an emergency room (radiology, laboratory, ER physicians’ groups) do not have to reduce their bills under this program, and those groups may continue to try to collect on those medical bills even after the hospital bill is waived. D. If all else fails, there may be free clinics in your area. While some free clinics are quite good, others provide only the most basic of care, and often are on a first-come, firstserved basis with long lines, and with services only a few days per month. Free clinics, however, are more likely to have medication samples.

Objective Test Results and Specialists’ Evaluations I. Objective test results include reports of x-rays, CT scans, MRIs, and ultrasounds, along with laboratory results and reports of procedural tests such as EGDs, colonoscopies, EEGs, sleep studies, pulmonary function tests, etc. Some of these results are more “objective” than others. Blood test results will most likely be the same even if two different people run the tests, and the results will most likely be interpreted in the same manner. Imaging studies, on the other hand, are not as “objective” as one would hope. For example, a damaged spinal disc can be described as “bulging,” “protruding,” or “herniated,” among other words. The radiologist will often use words such as “mild,” “moderate,” and “severe” when describing how much damage the disc is causing, and will rarely give precise measurements (e.g., saying that there is “mild disc protrusion“ rather than specifying that “the L4-5 disc protrudes 1-2 mm into the neural foramina”). The words used to try to clarify things can add to the confusion: “the herniation ‘gently abuts’ the nerve root” versus “the disc material has a mass effect upon the nerve root.” This is why specialists prefer to see the actual images when determining whether they can help a patient. Unfortunately, the ALJs and other adjudicatory personnel at the SSA are not trained in reading medical imaging, and are forced to rely on the radiologist’s report. The way the report is worded can definitely affect the ALJ’s decision in a case. Page 10


Ehlers Danlos Syndrome and Disability Benefits

Shoshana Pehowic, Esq.

II. In a similar fashion, the way that examination findings are described can affect a person’s disability claim. The ideal report would include accurate measurements of the reduction in a person’s range of motion, such as those done by most physical therapists during initial appointments (e.g., “left knee flexion was reduced to 150 degrees out of a normal 180 degrees“). Most often, though, the clinician estimates the range of motion, or merely refers to it as “reduced” without specifying the severity. III. Specialists are very important for people with EDS. Often, the family physician will find the EDS patient to be too complex and will begin the process of referring the patient to relevant specialists. Since EDS can affect all body systems, EDS patients can have at least five or more specialists at one time. This has its risks (a systemic problem being overlooked due to too much focus on the individual issues by different specialists), but also its benefits. According to SSA’s Regulations, a specialist’s opinion, if supported by the evidence and if consistent with the record, is supposed to outweigh the opinion of a general medical doctor, or of a specialist whose specialty is not relevant to the issue. Therefore, if you are able to obtain a favorable opinion about disability from a specialist who is treating you for the impairment in question, that opinion will have even more clout before the SSA. Furthermore, specialists are better able to explain the rare conditions and complications which can occur in a patient with EDS. “Routine” surgeries may not be so routine for a patient with EDS. A treatment may be less likely to be effective in a patient with EDS. A well-worded explanation of these issues by a treating specialist can make all the difference.

Conclusion Ehlers Danlos Syndrome can cause disability in many different ways, so you should consider which of your body systems are affected by EDS, and reflect upon how your ability to perform activities of daily living and/or work duties is impaired. You will want to clearly explain these changes to your doctors, explain it in the questionnaires that are sent to you by SSA, and explain it in your testimony at the hearing. It is also important to obtain opinions from your treating physicians, and to ask that your doctors support those opinions with citations to clinical findings and objective test results. Compliance with medication and doctor appointments is very important, and you should avoid “bad habits” such as smoking, drinking alcohol, or using illicit drugs. You will have a much greater chance of winning your disability claim if you seek the assistance of a local attorney or non-attorney representative who is experienced in representing disability claimants before the Social Security Administration. If you are adequately able to document your impairments and functional limitations, you will be much more likely to win your Social Security disability claim.

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EDS and Disability Benefits from the SSA (Handout)  

Written materials from Shoshana Pehowic's presentation at the 2013 EDNF Learning Conference in Cincinnati, Ohio.

EDS and Disability Benefits from the SSA (Handout)  

Written materials from Shoshana Pehowic's presentation at the 2013 EDNF Learning Conference in Cincinnati, Ohio.

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