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Advocacy Printer Friendly VersionThe M.E. Society of Edmonton (CFS) fields numerous inquiries each year from the general public, and medical, legal, and media professions about M.E. (Chronic Fatigue Syndrome) and related issues. Volunteer advocates also help members through the complicated process of applying for disability benefits from Canada Pension Plan, the Alberta Assured Income for the Severely Handicapped, private insurance companies, or in obtaining the Revenue Canada tax credit. The Society also provides free volunteer speakers to community groups or institutions interested in learning more about Myalgic Encephalomyelitis (Chronic Fatigue Syndrome). WHAT DO YOU NEED TO KNOW ABOUT DISABILITY BENEFITS? The fact that you have M.E./CFS (or any other chronic condition, for that matter) does not automatically mean that you will be able to get financial support to replace lost income. All disability insurance plans will include definitions of eligibility and suitability. These will vary from plan to plan: The eligibility requirements determine who is covered, in the event that they become disabled. Almost all plans limit coverage to those under 65 years of age. Private long-term disability insurance (LTDI) policies require the regular payment of premiums, by the employer, the individual, or both; the Canada Pension Plan (CPP) specifies that the applicant must have made minimum contributions to the Plan in four of the preceding six years prior to becoming disabled; the Alberta provincial disability plan (Assured Income for the Severely Handicapped, AISH) has both a residence requirement and an asset limit; and the Workers’ Compensation Board (WCB) requires that the illness or injury which causes the disability must be work-related. Suitability will depend on how disability is defined in the plan in question, usually (but not always) as an inability to work. A typical LTDI plan will cover anyone who is “unable to perform the regular duties of his/her position” for two years, after which the individual must be “unable to do any job for which he or she is qualified in terms of education and experience”. (The two-year point is referred to as the “change of definition date”.) CPP requires “a severe and prolonged mental or physical disability”, in which “severe” means the applicant is “incapable regularly of pursuing any substantially gainful occupation” and “prolonged” means that the condition is “long continued and of indefinite duration or is likely to result in death”. The AISH definition is “a permanent disability that severely impairs your ability to earn a livelihood”. What these definitions of disability have in common is that they estimate the limitations caused by a medical condition in terms of the individual’s ability to do something else which is not directly dependent on that condition. A person who is living alone will need to use much of their “residual capacity” to provide the necessities of feeding themselves and maintaining a residence, resulting in a reduced ability to be economically productive. An employer may (for example) allow a particularly valued employee to keep irregular work hours, which will result in greater productivity. These are factors which ought to be considered in determining whether an individual is “disabled” and are frequently ignored. Who decides if you are disabled? If there are going to be problems, this is where they are likely to start. The decision will probably be made by one of the plan’s administrative staff - someone with a qualification in one of the health professions (usually a nurse, rarely a physician) - who will conduct a paper review of the application and accompanying medical report, guided by the organization’s policies and procedures. These policies and procedures may be influenced by considerations which are not in the applicant’s best interests, for instance a private insurance company’s desire to maintain profitability or a government’s commitment to protect the taxpayers’ money. And they are usually heavily dependent on so-called “objective medical evidence” - laboratory tests, X-rays, CT and MRI scans, which are unambiguous and cannot be challenged. This presents a considerable challenge to the person with M.E./CFS, because the condition is diagnosed by exclusion and all the standard objective tests are likely to give negative (i.e., normal) results. The end result is that someone with - probably - limited qualifications and expertise, who is almost certainly influenced by factors which have nothing to do with you and who has likely never seen you or talked to you, is going to make a judgment call on whether or not you “fit” a particular definition of “disabled”. If “they” turn you down, you will of course disagree. The plan will include an appeal procedure outlining what you must do at each of several stages, with specified deadlines for each step of the process. It will also include a provision for additional assessments by a third party - the so-called “independent medical examination” (IME) or “functional capacity evaluation” (FCE). The final step will be a trial, either in the regular court system or before a legal or quasi-legal tribunal which will operate in much the same way as a court. Arguably, this is not the best way to do things. In an ideal world, everyone involved in the determination of disability should have the same goal: to find out if the individual applicant truly meets the plan’s definition of disability. The last thing an applicant needs is a stressful adversarial contest in which one side “wins” and the other “loses”. However, this is not an ideal world and the process is frequently not only adversarial but also confrontational and bitter. The side effects, in terms of lost homes and broken marriages, can be disastrous. It is not surprising that many individuals either give up the fight completely or accept a partial settlement rather than continue. HOW CAN YOU PREPARE? 1. Hope for the best but prepare for the worst. The introduction above may seem to be unnecessarily pessimistic. Hopefully, your application will simply sail through without a hitch - but don’t depend on it. 2. Be aware of the details of insurance plans, especially the relevant definition(s) of disability, your rights of appeal and time limits. It is best to get a complete copy of the plan rather than relying on the summary which most organizations provide. 3. Get help. If you are truly disabled, there is probably no way you can handle the process all by yourself (if you can, you are likely not as disabled as you think you are; remember - “A lawyer who represents himself has a fool for a client.”). Ideally, you should look for someone who is familiar with all the rules of whatever type of disability benefit you are seeking and is qualified to represent you at whatever tribunal is going to hear your final appeal. 4. Form a partnership with your family doctor. There is no substitute for a continuous and up-to-date medical history maintained by a single physician who is “on your side”. Your family doctor can validate your symptoms and treatment, refer you to appropriate specialists (either to confirm a diagnosis or to obtain a legitimate second opinion if he/she disagrees with the findings of an IME), prohibit activities which may compromise your condition (e.g., excessive physical exertion in a proposed rehabilitation program or FCE), and write reports on your behalf. Plan administrators frequently decide what is best for you and don’t adhere to the doctrine of informed consent. Your family doctor can protect you. 5. At the same time, try to minimize the demands you place on your family doctor. They tend to be overworked and (frequently) underpaid. Make a list of symptoms or other topics to be discussed before keeping any appointments. Try to cultivate friendships with the office staff, for help with keeping track of the paperwork. If you need a report from your doctor, first try to identify what it should include, then ask him/her to write it. 6. Be aware of, and use, the resources available to you. These can include family and friends, your union (if you are a member of a union; you have paid your union dues, and they owe you), support groups, your lawyer or advocate, and your Member of Parliament or Member of the Legislature (if you have difficulties with one of the public disability plans). 7. Use the Internet. This can give you information on: finding (or checking on) a doctor; medical conditions and terminology; medications and their side effects; legal decisions. You can also find support and discussion groups which can help with managing your condition and provide advice on dealing with insurance and other problems. Just remember: don’t believe everything you read - there’s a lot of snake oil on the Internet! 8. Keep a paper trail. If possible, try to keep copies of all application and appeal requests, and all the medical reports submitted. Keep a log of all phone conversations with the plan staff; if possible, send a letter to the person who talked to you after each occasion (“This is my understanding of what we discussed and what we agreed . . . .”) or, alternatively, ask them to send you a letter of confirmation. Some lawyers recommend keeping a daily journal, but many people in this position find it a depressing activity (who can blame them?). 9. Finally, don’t sign anything unless you understand it and can live with the consequences. Check with your lawyer or advocate first, if possible. © 2005 John Wodak Advocacy Help If you require assistance or advice in filling out forms for AISH, disability pensions, insurance, etc., please contact: John Wodak at: |