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  Know Your RightsThe following are selected questions, with a summary of the answers found in the Know Your Rights Handbook.
Question: I have asked my doctor for a copy of my records and he refuses to give it to me. What are my rights?Answer: Each state has a slightly different law instructing individuals how to get their medical records. The Handbook's state-by-state review of those laws is found in Appendix A, and Appendix B provides a sample request for medical records. In general, a patient is entitled to inspect and copy your records. However, doctors are allowed to charge a per-page copying fee, and, in some states, a fee for pulling the file and postage. Generally, your request for records must be in writing. If you have an attorney or other representative gathering records on your behalf, they will need a signed release from you allowing them to access your medical records. What to do if your doctor refuses to provide you with your records, even if you follow your state's law to the letter, is discussed more fully in Section III.
Question: I have lost my job. How do I keep my health insurance for as long as possible?
Answer: Federal law requires that you be offered continuation coverage, called COBRA, for 18 months or longer. Not every employer is required to offer this coverage; for example, small employers are not obligated to offer continuation coverage. The key, though, is ensuring that you do whatever it takes to avoid a pre-existing condition limitation when you obtain new insurance so that medical interventions relating to your IBD are covered at all times. That means that you must obtain new employment-based group health insurance within 63 days of a loss of coverage. Section V.A discusses COBRA, pre-existing conditions limitations, and other avenues to obtain health insurance for people with IBD.
Question: My doctor has prescribed a drug that my insurer says is not on the "formulary" for my insurance plan. What does this mean, and what do I do?
Answer: A formulary is a list of medications that are covered by your insurance plan. The first thing to do if you receive a notice that a medication you are taking is not covered by your insurance, is to call your insurer and ask if there is a medical alternative that is on the formulary. If so, then go back to your doctor with this information and get him or her to write you a prescription for the alternative, medically equivalent drug. If your insurer is unable to identify a medically equivalent alternative, or your physician believes that the drug the insurance company covers is not a true medical equivalent, you and your doctor should appeal the denial of coverage for the prescribed drug. Section V.B discusses appeals processes, and Appendix C contains sample appeal letters, including appeals involving formulary issues.
Question: My disability insurance carrier has sent me a letter saying that my benefits are being discontinued because I no longer am disabled, but both I and my doctor disagree. What can I do?
Answer: You can appeal. The letter notifying you that your benefits were terminating should have contained instructions on how to appeal. The appeals process is discussed in detail in Section VI.C, below. By gathering your medical records, obtaining written support from your physician, and keeping a diary of your daily symptoms, you will have all the materials you need to launch an appeal. In addition, your insurer may require, or you may request, an Independent Medical Examination, which is discussed in Section VI.D, below. A sample disability insurance appeal can be found in Appendix C, along with a sample disability retirement appeal.
Question: I know I had a right to appeal my insurance company's decision, but I was too sick to do so in the time frame the insurer allowed. Do I still have recourse?
Answer: If you take anything away from this handbook, let it be that you must meet deadlines. It is nearly impossible to resurrect an appeal if you have allowed the appeal time period to lapse. See Section IV, below. If you are too ill to provide a detailed appeal letter, then send a letter within the prescribed time frame indicating that you are appealing on whatever bases you feel are appropriate, and indicate that you are too ill to provide a detailed appeal at that time, but that you will do so as soon as you are able. Ask that they note that your appeal is timely, but that they hold the appeal in abeyance until you are able to compile a more detailed appeal.
Question: My doctor wants to help me obtain insurance coverage for what she is prescribing, but she doesn't know what she needs to say. Can you help us?
Answer: The discussion of the various elements that should be addressed in each type of appeal should help physicians to know what issues to address. However, patients must also be mindful of the fact that doctors don't get paid for the time they spend writing letters to insurance companies. There is much a patient can do to minimize the burden on physicians, enabling them to help their patients to get what they need. In addition to using the appropriate area of the Handbook to determine what issues a doctor should address, see Section IX on how patients and doctors can work together to ensure the best possible results.
Question: I don't have disability insurance and can no longer work. What can I do?
Answer: You may apply for Social Security Disability Insurance (SSDI). First, you must determine what your disabilities are. The criteria for digestive disorders are found in Appendix D. However, if, in addition to IBD, you suffer from fibromyalgia, depression, or any other conditions that contribute to your inability to work, you should find the criteria for each of your disabilities on the Social Security Administration's website, http://www.ssa.gov/, which includes what is called the Blue Book – the listing of criteria for all disabilities. Once you have all of the relevant criteria, you should make every effort to explain your symptoms in the context of those criteria. There is more to obtaining SSDI than just showing that you are ill. SSDI is given only if there are no jobs in the economy that you could perform. You have to make it clear that, not only can you no longer do the job you had when you became too ill to work, you also cannot perform any other job that is available in the economy. These criteria are explained in more detail in Sections VII.B and C, and a sample SSDI application is contained in Appendix F.
Question: My employer is making new and unreasonable demands on me, and I believe that the intent is to find an excuse to fire me because I am sick. Does the law protect me?
Answer: To be protected by the Americans With Disabilities Act (ADA), assuming your employer is covered, you must be disabled according to the Act's definition of disability, i.e., you have a physical or mental impairment that substantially limits one or more major life activity. Major life activities include seeing, hearing, speaking, walking, breathing and, for those of us with IBD, eating and disposing of bodily waste. In addition, you must be able to perform the essential functions of the job, i.e., the fundamental duties of the position you are in, either without any accommodation, or with a reasonable accommodation, which is an accommodation that would not create an undue hardship on an employer.
For example, if you are an editor at a publishing company, reading and editing would be essential, whereas photocopying and mailing your edited work to an author may not be, as long as the employer is sufficiently large that transferring these functions to another employee does not create an undue hardship. Further, if the vast majority of your work as an editor can be performed at home, allowing you to work at home at least some of the time may be a reasonable accommodation, as long as you are not needed at the workplace to meet with authors, attend staff meetings, and the like. In other words, the answer to your question requires a case-by-case analysis of your medical condition, the nature of your job, and the ability of the employer to make accommodations without creating an undue hardship. Each step in the analysis of an ADA claim is discussed in detail in Section VIII.A.i of the Handbook.
Question: My 8 year old daughter has Crohn's disease and I need to be able to take time off when she is particularly ill, as well as to accompany her to doctor appointments, diagnostic tests, and treatments. My employer has said that, if I do not improve my attendance, I will lose my job. What can I do?
Answer: The Family and Medical Leave Act (FMLA) provides that employers with more than 50 employees grant 12 weeks of unpaid leave to care for oneself or an immediate family member, including a child. As a general rule, if you have been working for this employer for at least 12 months, you are entitled to FMLA leave. Although FMLA leave is unpaid, an employer may require or permit an employee to use all accrued vacation, sick, or other paid leave time during an FMLA leave. You must give your employer as much notice as possible of your FMLA absences, and your employer can require a medical certification (although you are not required to provide medical records to an employer to justify an FMLA leave). See Section VIII.B for a fuller discussion of the FMLA.
Question: I went to my doctor's office and the person at the front desk would not allow me to use the bathroom until I had filled out all the necessary forms and provided my insurance card. I told her I had IBD, and she still would not let me use the bathroom. What can I do?
Answer: There is much advocacy to be done outside the legal context. Every time we teach a person about IBD, we make the world a more accepting place for all IBD patients. See Section XI for ideas on advocacy outside the legal context.
These and other questions are answered in greater detail in the Handbook, available in our online store to members for $31.50 and to non-members for $35, plus shipping and handling. For phone orders, please call 800-932-2423, ext. 212 or 254. Please allow up to three weeks for delivery. |
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