Trigger Warning: This blog mentions suicidal ideation and related feelings.
We are at a point in our lives when we are at the financial mercy of others. We are on disability for what insurers term “disabilities of the mind,” which limits most private insurance coverage (work and individual disability insurance) to 24 months. Physical disabilities have no such limitation on coverage–you are covered as long as you are disabled–ostensibly because physical disabilities are easier to identify, measure, and track–which is to say that insurers believe physical disabilities are harder to fake than are disabilities of the mind.
Yes, some people will fake or embellish a disability–consciously or otherwise–so that we can understand that insurers are vigilant in ensuring they are paying only legitimate claims. Still, we are disadvantageously served by having our support limited to 24 months. What if we aren’t better within 24 months (which is fewer than 7 months from today)? There is not parity in the treatment of disorders of the body as opposed to the mind. Perhaps we need better neuroscience.
We have been treated as suspected cheaters by one of our two disability insurance companies, while the other has admittedly deprived us of our contractually agreed upon monthly payment because legally it can.
Since you were a child, have you been dependent on someone for your financial viability: to pay for your housing, food, clothing, utilities, a book from Amazon? Maybe you lived with your parents after college or during a spell of unemployment. Perhaps you stayed home to raise children while a spouse provided income. How did it feel to be reliant upon another for your financial sustainability?
If you chose to be reliant and/or trusted the providing party, maybe you felt secure. For us, after providing the bulk of our family’s income for 17 years, it has been humbling, shame inducing, and frustrating to the point of suicidality to be reliant upon insurance companies and now the federal government (under the guise of Social Security Disability Insurance, SSDI).
Our goals in this blog post are to encourage you to obtain disability insurance coverage (or supplement your existing coverage), to warn you of the pitfalls of the disability insurance system so that you do not feel abused the ways in which we feel abused by insurance companies, and to convince ourselves and you that we are not our financial status any more than we are our diagnoses or other uni-dimensional criterion.
Think you don’t need disability insurance? The Social Security Administration claims that 1 in 4 of 20-year-olds with disability insurance will become disabled before retirement age. That’s a lot of people. If you were told there was a 1 in 4 chance that you would be in a plane crash if you chose to fly (a made up statistic to prove our point), would you ever get on a plane again? By the same token, if you were told there was a 1 in 4 chance you would win the Powerball (actual odds: 1 in 292 million), how many hundreds or thousands of tickets would you buy? How many are you buying at the present odds?
Social Security wants you to get insured because the money they provide you if you become disabled is unlikely to be enough to live on. Trust us on that one.
HOW TO BUY DISABILITY INSURANCE
Where do you buy disability insurance? If you work, ask your employer. If you work for a large company, ask Human Resources or Benefits. If you work for a small employer, ask whoever gives you your paycheck/pay stub or manages your health insurance or days off.
If your employer offers you long-term disability insurance (LTD), often you have to accept it when you first start working. If you are given the choice, pay the premiums out of your own money. Do not have your employer pay for it. Why would you turn down a free benefit? While you should check with a tax professional, in most cases if your employer pays for your disability premiums, then your disability benefit payments are taxable if you become disabled, whereas your benefits are tax-free if you paid the premiums yourself. When you’re not pulling in very much money, keeping every penny becomes a priority.
Whether or not you can get disability insurance from your employer–or if you’re self-employed–please consider obtaining supplemental disability insurance from a private company on your own up to the maximum for which you can be covered (primarily depends on your occupation and may vary by insurance company). This is important because (1) your group disability policy may cover very little of your income (50% or less) and (2) your group disability benefits will likely be reduced if/when you qualify for Social Security Disability Insurance (SSDI), whereas you can buy an individual disability insurance policy that is not reducible by SSDI. It may cost more, and if you’re the 1 in 4, you will be glad you paid for it! We are.
The best way to find a disability insurance agent is to work with an independent representative, such as a fee-only financial adviser who does not work directly for any one insurance company and can instead recommend products that best suit your situation. Often the best insurance policies are from companies you have never heard of (because they don’t advertise) and won’t hear about unless you work with an independent professional.
Look for a professional who has at least one of these designations: CFP (Certified Financial Planner) or ChFC (Chartered Financial Consultant), which prove the financial adviser is properly trained. Ask potential advisers if they are experienced in disability insurance and what they will charge you find a policy. If you have a disability policy through work, your adviser will need to see a copy to know how much coverage you need.
How zealously are disability insurance providers looking for fraudulent claims? Consider our experience:
Our disability insurance providers require a list of all health care providers we have seen for any reason in the past X months, to be updated quarterly. Both our work insurer and private insurer regularly obtain our medical records–hundreds if not thousands of pages of case notes. The private insurer apparently found what they consider signs of fraud, because we quickly found ourself filling out monthly paperwork that required us to justify our disability. The same questions about our limitations and symptoms over and over month after month. It felt frustrating, humiliating, judgmental, and redundant.
During this time, a representative of our private insurer contacted us to say we were required by contract to submit to a person-to-person meeting with her. Keep in mind that after we became disabled, we rarely left the house or had contact with anyone outside our family or health care team. The thought of meeting with a stranger (even in our own home) added to our trauma and feelings of being unsafe and resulted in suicidal thoughts and a subsequent two-week in-patient hospitalization (during which we worked on our condition very beneficially).
We do not wish to portray us simply as a victim of the insurer; we were victims of prior trauma, which left us vulnerable and easily intimidated. You can judge the insurer’s actions for yourself, with the understanding that you are receiving only our version of events.
One of our therapists contacted the disability insurance company (with our prior written consent) and told them they were contributing to our suicidality and asking why they insisted upon meeting with us. It turns out that the notes from a visit to our primary care physician erroneously attributed a shoulder injury of ours to playing baseball. The insurance company told our therapist that if we were well enough to be on a baseball team, we were well enough to be working–and too healthy to be receiving disability benefits.
Long story short: the injury was sustained in February and treated in March. Where in Minnesota can one play on a baseball team in the middle of thick of winter? We did not get hurt playing baseball. We were not on a baseball team. We have trouble even going to a grocery store! Our shoulder injury was attributed to a fluke of the aging process and many months of physical therapy (mostly at home, thankfully) were prescribed.
We aren’t mad at the doctor for an error in transcription; we are furious with the insurer for ignoring thousands of pages of case notes from our three therapists, including one they required us to see (by contract we were required to see someone with a PhD). Instead, they followed a dubious “lead” to look for fraud. We are grateful to our therapist, who also told them she would be thrilled if we would join a baseball team to build up our social tolerance and that such an activity would not suddenly render us trauma- and dissociation-free. (Note: we have not joined any athletic teams.)
We followed up with a rant to the insurer about their witch hunt, and the monthly requests for justification of our disability ceased, and we were assigned a new claim representative who has since left us alone to focus on treating our disorders of the mind.
There are other instances of harsh treatment by the disability insurer from our work policy, but hopefully you get the point. We needed to vent, so hopefully that rant will help you understand just how intently disability insurers can scrutinize even legitimate claims.
WE ARE NOT OUR DIAGNOSES OR STATUS
We have been told this since Day 1 of our disability: you are not your diagnoses. Many people in the world define themselves by their primary vocation: parent, worker, volunteer, etc. That seems natural. You define yourself by what you do for most of your time.
You might not realize this is the case until you are primarily a patient, a survivor. At this point, it is challenging for us not to define us as a trauma victim, someone with multiple personalities (Dissociative Identity Disorder is so misunderstood that this diagnosis has become a bigger secret and mark of shame for us than the original trauma), someone with extreme Obsessive Compulsive Disorder (OCD), someone with a primary immune deficiency (not life-threatening and no joy to live with as it causes vulnerability to illness, excessive mucous production, and multiple food sensitivities).
In our culture, productivity and financial status are promoted and prized. We fall short on these metrics. Does that make us less worthy? We’re not going to lie: it sure feels like it. We used to have passion for our work (education). Now, we do not have passion. Not even for healing. Life is hard, mostly stressful and joyless. Pity parties rarely help, and we still host some. Anger gets us nowhere, and we feel it frequently.
What will we become? That is the wrong question because we have to live now. We can’t wait to exist or matter until we have arrived at some future benchmark.
There is no future. The future is a fantasy. A dream that we are having right now.
Read that last line again.
Only right now exists. The past is a version of our memory, and it can be recalled only in the now. The past is not happening now, not even when we recall it. Those with PTSD and dissociation have trouble living these truths.
If we could feel these truths, if we could experience being present on a regular basis, we could know that past traumas are over and future danger is a fiction. In this moment, as we write this, we are safe.
May we dwell in the now without judgment, expectation, or comparison. We are trying.