DISABILITY PROCESS MADE EASIER
(Ed. Note: The following article by Monica Archer is very well-written and very instructive for anyone applying for disability. Monica did it without legal advice but not everyone may be able to do that so we leave you with the following advice:
You may want to simply hire an experienced disability attorney at the very beginning of your claim. Quite often attorneys are willing to do the initial paperwork and assist you in gathering all of the information which the Social Security Administration requests. An experienced attorney will have insights to the process which maximizes your chances of obtaining benefits at the initial application level but also begins to lay the foundation for a strong record of disability in the event your claim proceeds through a hearing. The cost of the representation must be balanced against the long term benefit. Although the attorney fee is typically 25% of your retroactive benefits, your retroactive benefits only represent a small portion of the benefits you are likely to collect over a long period of time, often 10, 15 or 20 years. Thus, an attorney fee of several thousand dollars must be viewed in the context of a future stream of disability benefits often exceeding $100,000. It is important to hire an attorney who is experienced in handling disability claims. Most attorneys who devote a substantial portion of their practice to Social Security disability claims are members of an organization known as the National Association of Claimants Representatives. They have a toll free referral line, 1-800-431-2804.)
The Social Security Disability process can be overwhelming and stressful. The more information you have ahead of time, the better prepared you will be.
Before applying for Social Security Disability (SSD), obtain the Disability Kit available from ST/Dystonia. Then concentrate on obtaining as many of your doctor's records as you can. Once you get all your doctor’s reports, make sure they are correct about your condition(s). This is very important to substantiate your disability claims. Ask for a business card from each doctor, therapist, chiropractor, etc., as you’ll need their addresses and phone numbers & perhaps their fax numbers, once you begin the disability process. Also get the correct addresses and phone numbers for any hospitals that treated you, and any copies of their records.
Make several copies of the doctor and hospital reports for yourself & keep 3 identical notebooks: one for yourself, one for SSD, & one for a possible lawyer in the future. Three-ring binders work great. When you get copies of doctor’s records, if you tell them it's for FURTHER TREATMENT, most of the time you'll get the copies for nothing. Otherwise, they'll charge you approximately 50 cents per page to Xerox. It’s extremely important to gather as much info as you can from all doctors involved with your health care, even if they go back 10-20 years ago or more.
Other possible things to add to the notebooks are: Brochure from ST/Dystonia describing what Spasmodic Torticollis is, photographs of your X-rays & MRI's; photos of
you with your ST Contortions. (Make 3 copies of the photos- 1 set for each notebook). Writing a report describing A Day On Your Job With ST and A Day With ST will also strengthen your case when you include them in your notebook. Bear in mind, that you want to emphasize YOUR WORST DAYS WITH ST.
Keep a daily journal that describes your ability or inability to get through the day. Have your spouse keep a journal on how he/she sees you day to day. Keep a daily Pain Chart that lists your pain on a scale of 1-10 (ten being highest level of pain), medications you took that day & how they affected your pain scale, and anything else that might’ve worsened or helped your ST symptoms. Include the Pain Charts & Journals in your notebooks.
Make copies of all medications you take & their side effects highlighted with a marker, to be included in the notebooks. Don't forget to include Botox, if you receive it for your ST. Medication descriptions and side effects can be obtained through your pharmacy. Sometimes they will attach these with your prescription, so get in the habit of keeping them. The Internet is also helpful in getting this information. SSD will need to know the name of medicine, name of doctor that prescribed it, the reason you’re taking it, as well as side effects.
Other things to help strengthen your disability case are letters of support from friends & relatives who see you daily & can write about how ST has affected you & what your family members have witnessed. Also letters of support from past and present co-workers are helpful especially if your ST symptoms were noticeable on the job, and maybe even a letter from your ST Support Group leader. Perhaps include a VHS video of you with your ST at its worst. My husband made a short video showing how ST affects the neck, head & shoulder muscles with explanations about what ST is & used photos and videos of me with contortions.
Try to look at the process of filing as an opportunity to educate SSD & the person who will take on your case, since Spasmodic Torticollis is a disorder that is not commonly known. Since the SSD process can be overwhelming be sure you have all your ducks in a row, so to speak, before you make that initial call to SSD.
If you have a good relationship with your boss, try to get a letter from him/her on how ST has affected your job performance. If you are still employed, DO NOT quit your job. This will complicate the disability process. If your ST is debilitating and affecting your ability to work you could possibly get a letter from your doctor giving you an indefinite medical leave from your job due to the treatment & symptoms of Spasmodic Torticollis. If you decide to do this be prepared for no money coming in for at least 6-8 months and possibly going without any insurance coverage. If you’re married and your spouse works and has medical insurance that is a plus, as you’ll need help with food, rent, mortgage, electric, etc. You have to be on disability for 2 + years before being eligible for Medicare.
As for getting through the months before the benefits are approved usually the state welfare program (Social Services) can be obtained to get through that time period. But be advised that the cash portion of the welfare benefits will have to be repaid when the back paycheck from Social Security comes in. (The food stamps do not have to be repaid.) Being on welfare also provides some health care benefits through Medicaid although it can be difficult to find a doctor who accepts Medicaid cases. Whatever happens, don't skimp on the money needed to verify the disability case. Even if you have to use a credit card or borrow money from family or close friends, be sure to get all the testing and diagnosis you are likely to need for your disability case and get it from doctors who are knowledgeable and sympathetic to your disease/disorder. If you don't, Social Security will send you to one of THEIR doctors, who will find that you are able to work. Don't fall for the gimmick that you can save money by using their doctors instead of yours. Their doctors may be free but the reports that they file will usually do more harm than good to your claim.
Sometimes the disability insurance policies through your employer can be obtained faster than SSDI can. Even if those policies are only good for a limited period of time (some can be good for a few years), it can help get you through until the SSDI benefits arrive. Of course, not everybody GETS disability benefits through their employer. If your previous employer had health insurance, it may be worthwhile to pay to maintain that insurance for a few months after leaving the company, at least until the most expensive of the diagnostic testing has been completed.
The best protection against suffering through a lengthy hardship before the benefits come through is to try to prepare an airtight case in the first place. Once you have all doctor and hospital reports, and any of the above suggestions, you’ll need to obtain a Disability Report Adult Form SSA-3368-BK. You can get this from your local Social Security Office or on-line at: HYPERLINK "http://www.socialsecurity.gov" www.socialsecurity.gov. Fill out this form as completely as possible before your SSD interview.
The key to dealing with SS disability reps is to find out specifically what they want, and then get it for them. For example, if they call and say that they are scheduling you, the patient, to visit one of their doctors, instead of panicking, politely ask them whether there is some particular piece of information that is missing from the paperwork that you and your doctors have submitted. Then offer to supply that information through one of your own doctors. Have your authorized relative or friend make it clear that you aren't trying to distort the case; you just want the patient to be examined by a doctor who is well informed on this disease/disorder, and/or well-informed on this patient's background.
Most of the disability determination representatives at the Social Security office are not ogres, but they have certain hoops to jump through, and if any of those hoops are missing, the application gets denied and has to go through the longwinded second stage. You will start receiving routine notices from your disability determination rep. As soon as you have a name and number for the rep, your authorized relative or friend could call the SSD rep to politely ask whether they needed any more information and whether the doctors were returning their reports as they had been instructed to do. Most SSD reps actually seem to appreciate these calls, and use them to inform you that you should lean on certain doctors to get their reports turned in. Be polite and keep the rep informed as to the applicant’s schedule of doctor visits and tests.
Some of the questions on the application are not well geared for disorders such as ours, so you have to word your answers to fill in the gap. For example, if the question is: "Can you stand and walk?" the answer might be, "Yes, but only for a few minutes at a time, and profound unsteadiness with dizziness and disorientation from head tremors and neck muscle pulling is likely to result."
Other answers might involve mentioning that some activities can be performed occasionally, but not at predictable or regularly scheduled times, and only as your condition allows. Prolonged recovery times may also need to be mentioned. For example, with ST, you can do your grocery shopping, but not on a predictable day or time of the week, and the recovery time may be as long as a few days. (You should then point out that these prolonged recovery times is part of the medical description of this particular disease/disorder.) Sometimes we don't think of these details until a friend or relative takes the time to sit down and really think about the answers. In real life, we focus on what we CAN do. On the application, it takes some work to remember all the things we CAN'T do.
Even more important than our own answers are the ones that come in from the doctors, so it's important to get a diagnosis from more than one doctor if possible, and make sure that they are doctors who really know how to fill out disability paperwork. (Amazingly, many of them don't.) It's also important to put your symptoms in writing for your doctor, including how these symptoms make you unable to work on a sustained basis. Make sure that the doctor's records are complete, and that they do not contain anything which would detract from the case. And, finally, it's important to make sure that the doctor gets the paperwork turned in to SS in a timely matter. Sometimes, office staff gets overloaded with other duties and misplaces the forms or forgets where to send them back to.
You will need to make sure that both you and your doctors fill out everything in detail, carefully outlining your worst days and the duration of your activities.
Make Xerox copies of the questionnaires to fill out & make changes on them before putting final answers to their actual forms. Also, keep your answers CONSISTENT. Refer to prior questionnaires & answer with the same dates, facts, etc. Most importantly, keep copies of ALL correspondence to SSD.
Monica Archer
7091 14th St.
Spring Lake, MI 49456
e-mail – archerdavmon@yahoo.com
