Not everyone who has Marfan Syndrome winds up disabled, either temporarily or permanently. However, many people who have Marfan Syndrome do find themselves filing for disability income at some point in their lives.
There are two general sources of disability income:
- private insurance plans (disability insurance that you purchase through an employer or on your own)
- public disability programs (Social Security Disability Income (SSDI), Supplemental Security Income (SSI))
There are two general kinds of disability income:
- short-term disability (for injuries/illnesses lasting up to 90 days; claim is typically filed through a private insurance plan)
- long-term disability (for injuries/illnesses lasting longer than 90 days; after 365 days, you can file for SSDI).
When applying for short-term disability income, you typically must demonstrate that you are medically unable to perform your own job. When applying for long-term disability income (from either a private plan or public program), you generally have to demonstrate that you are unable to perform any job. It's essentially an all-or-nothing situation.
Because there is high demand for disability income, and fraudsters trying to receive payment for fake injuries/illnesses, the disability system (public and private disability plans) is really rigged against you. It's very much a "guilty until proven innocent" mind-set.
To get approved for disability income from either a private or public program, you need to think, act, and take notes like a lawyer. You need to make a winning case that you are unable to work because of medical issues. You need to amass a sea of supporting documentation that explains what is wrong with you, how long it's been wrong, what you've done to treat it, and how it is negatively impacting your life (not just your ability to work). And you need to pay scrupulous attention to any paperwork involved, completing it fullly and accurately (dot every "i" and cross every "t").
Some tips:
- Get to know the details of any private disability insurance plans that you hold. See Guide to Disability Income Insurance from America's Health Insurance Plans. When do benefits kick in? At what level? It helps to figure this out before you are sick or injured. Be prepared!
- Keep meticulous medical records, or ensure that your doctors' offices do. You may want to order a copy of your medical chart once a year or make sure that all docs send you copies of key test results. At various points in the disability application process, you will need to provide medical records supporting your claim. It helps to know ahead of time if these records are accurate, complete, etc.
Related Resource:
Your Rights To Your Medical Records Under HIPAA, from About.com
- See your doctor regularly. This may seem like obvious advice, but being really sick can make you want to stick your head in the sand and go weeks or months without seeing any doctor. Fight the urge, and try to see your doctor at least once a month (more often if appropriate). Going to the doctor means your symptoms and complaints will be documented by a medically credible professional.
- Keep a medical appointment calendar. Who did you see, for what problem, on what date? Keep a running list, including full contact information for the doctors involved. You never know when you might need to reconstruct this information at a later date.
- Keep a daily symptom diary. What hurts or doesn't work today? What side effects are you experiencing from medications? What activities are you unable to do because of your health? Reviewers typically want to know about industry-standard Activities of Daily Living (essential to caring for yourself at home) and Instrumental Activities of Daily Living (essential to caring for yourself in the world). ADLs and IADLs include bathing, grooming, shopping, driving, etc. Anecdotal evidence suggests that reviewers are also moved when they hear about how a medical issue keeps someone from doing the hobby they love, playing with their grandchildren, etc.
Sample Symptom Diaries:
These are not Marfan-specific, but should give you some ideas to help you start developing your own personal symptom diary.
Diet/Wellness Symptom Log from MemoryMinder Journals
Fibromyalgia symptom log
- Take yourself out of the middle. When you are asked to provide records/supporting documentation, consider whether you should get it from doctor yourself. It may be easier to have the doctor send the information directly to the person who has requested the documentation. For whatever reason, doctors' offices are more likely to send a complete copy of your medical file to the requestor than to you. You can and should request that when they send the documentation to the requestor, they photocopy everything and mail it to you.
- Consider hiring a disability lawyer to represent you, especially if you are filing for SSDI. A majority of applicants for SSDI are denied on their first attempt. Most disability lawyers work on a contingency basis, charging no fee up front and taking a percentage of any money you are awarded from SSDI/SSI (typically, 30 to 40 percent).
Related Resource:
Social Security Attorneys - what you should know, from disabilityblogger.blogspot.com.
Web site of Jon Rodis, who has helped many people with Marfan successfully apply for disability income. Site includes a disability checklist with key tips for getting through the process successfully.