I worked for 22 years after developing multiple sclerosis (MS), but work kept getting harder. I’m a nurse, and hospital nursing means a lot of running to patient rooms, lifting and turning patients. Skilled nursing also involves a lot of hand coordination to do things like start IVs, mix meds, and change dressings. It’s tiring even without MS.
After a big relapse in 1989, I found I could no longer keep up with the demands of patient care. Fortunately, Kaiser Permanente, my employer, had a system of advice nurses who help patients and families over the phone. They transferred me to one of those positions, and I loved it. The physical demands were mostly talking, typing, and using a computer, which I could still handle easily.
Then MS fatigue got in the way. After a few hours, I would start to lose concentration. I couldn’t always make out what people were saying. I sometimes felt I wasn’t thinking straight, and fuzzy thinking is really dangerous for an advice nurse. I could have killed a patient if I told them to use home remedies when they actually needed to come to the ER.
I solved the fatigue problem by working shorter shifts, like 4 hours instead of 8. This change considerably reduced my take home pay, of course, but I stuck with it until Kaiser closed the advice center where I worked. Now, keeping the job would mean an 80-minute drive to and from work, and I was already finding driving quite difficult.
So I had to quit. I found a couple of other advice jobs with for-profit companies, but they demanded 8-hour shifts and the learning of new computer equipment and programs. They were less supportive and less willing to accommodate my needs for breaks, and more restrictive in what I could say to patients. I actually got fired from one job, which came as a shock since I thought I was doing great.
I realized I might have to stop working regular jobs, but how to pay rent? How to feed my family? I am so grateful our country has a program to support people who can no longer work for health reasons. But this program called Social Security Disability Insurance (SSDI) is not easy to qualify for with MS.
The Social Security Administration (SSA) has created an obstacle course to ensure that only “deserving” people receive SSDI. They have detailed rules for what qualifies as a disability and how those disabilities are evaluated. They demand a lot of testing and documentation. The process wound up taking over a year, and I needed some help to manage the obstacle course.
What Qualifies Someone for SSDI
According to SSA, SSDI is only for long-term, near-total disability, not for partial or short-term disability. Most states have short-term disability insurance people can access for a few months, but you only qualify for SSDI if all of the following are true:
- You cannot work or engage in substantial gainful activity (SGA) because of your medical condition.
- You cannot do work you did previously or adjust to other work because of your medical condition.
- Your condition has lasted or is expected to last for at least 1 year or to result in death.
You need a work history to qualify for SSDI. In general, you must have paid into the Social Security system (FICA taxes) for 10 years in order to receive SSDI, although younger workers may qualify in less time. The more taxes you have paid, the higher the SSDI payment will be, up to a maximum of about $3,300 per month, according to SSA.
I never got nearly that much, but I’ve gotten enough. If one hasn’t paid enough taxes and is low enough in income, one might qualify for Supplemental Security Income (SSI), which pays a lot less than SSDI.
To be classed as disabled with MS, SSA says we must have either:
- Loss of motor function in two extremities resulting in an extreme limitation in the ability to stand up, to balance while standing or walking, or to use your arms.
- Marked limitation in physical functioning AND in one of the following areas:
- Understanding, remembering, or applying information
- Interacting with others
- Concentrating, persisting, or maintaining pace
- Adapting or managing oneself
These criteria are kind of judgment calls, and Social Security tries to be strict in their judgments. To qualify, one needs detailed reports from one or more doctors, with good accounting of one's actual limitations, and probably physical and neuropsychiatric exams to give quantifiable proof of disability.
Keeping good records of what we can and can’t do helps. Share them with your doctors so they appear in medical records, and have a copy to give the Social Security examiners.
I didn’t do most of that preparation. I just filled out the application forms and sent them to Social Security. As a result, I was denied the first time I applied. This typically happens, and applicants are allowed two appeals of a negative decision.
For my appeal, I did what I should have done at the beginning and hired a disability advocate to help fill out the forms and coach me in what to tell examiners. Disability advocates typically charge you a percentage of your first disability payment when it is received. They don’t get paid anything unless you win.
After my second application, SSA mandated a physical exam by their own doctor and a neuropsychiatric exam. That was kind of fun, a long series of puzzles and games that I enjoyed, until fatigue kicked in after about 20 minutes. Then I could no longer solve anything, and the examining psychiatrist approved my claim on the grounds of cognitive disability.
Living on SSDI
I miss work, but living on disability has been much better than dragging through a job I couldn’t do. I have been able to have a second career as a writer, working maybe 2 or 3 hours a day, not making much money, but enjoying what I do and feeling that I am contributing. SSDI + retirement savings from work + my wife’s income + some help from family has kept a roof over our heads.
One good thing about disability insurance: You are allowed to work a certain amount. When a recipient’s earned income rises over about $700/month, we might get investigated to see if we’re still disabled, but we’re allowed up to $1,300/month or so before risking loss of benefits.
I have worked as a tutor at local colleges. It doesn’t pay much, but I really enjoy helping young people learn to express themselves in writing. Staying home on disability can feel lonely, and I have been able to use the money earned from tutoring. SSA also sent me to vocational rehabilitation programs to try to find a job I could do, but nothing ever worked out.
Budgets are tight on SSDI. Had I known what was coming, I would have bought long-term disability insurance from a private company. Because I thought it could never happen to me, I actually passed on an opportunity to buy insurance a few months before my MS diagnosis. If you haven’t been diagnosed, you might want to buy some long-term (and maybe also short-term) disability insurance.
Unfortunately, once we’re diagnosed with MS, it’s doubtful anyone would sell us disability insurance. Usually, to actually get paid by a disability insurer, we have to go through a process like the one for SSDI, perhaps the exact same process. If SSA says we’re disabled, that will be good enough to get benefits we have paid for.
The other great thing about SSDI is that it qualifies you for Medicare after you’ve been on it for 2 years. In my opinion, Medicare is excellent insurance and I love it, but we have to know how to make it work for us. I’ll write about Medicare in my next blog.
To connect with other people living with multiple sclerosis join our MS Facebook Support Group.
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