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Disability Income Preparation Guide

This article is for anyone who currently earns a living, but has no clue how your bills would be paid if you became disabled, whether you are a Migraineur or not. Most of us are oblivious to the basic disability protection laws, the intricacies of private disability insurance and the grueling process of applying for Social Security Disability. The problem is that we don’t think about it until it’s too late. Whether you have episodic or Chronic Migraines, or if you are perfectly healthy, preparing for a potential disability now can mean the difference between being able to focus on your health or being forced to work because you don’t have income.

The choices I made in the critical early months of Chronic Migraines, have given me income when I needed to leave work. I hope that sharing my financial journey can help you to think about preparations you should consider.

Family Medical Leave Act (FMLA)

When the Migraines turned from episodic to chronic, I became familiar with the Family Medical Leave Act (FMLA), which applies to businesses with 50 or more employees. This law protects your job.

  • FMLA allows you to take 12-weeks of unpaid medical leave during a 12-month period. The 12-weeks allotted under FMLA do not have to be taken consecutively.
  • FMLA requires that your group health insurance coverage be maintained during your absence.
  • FMLA allows you to return to the same job or an equivalent job upon your return.
  • FMLA does NOT provide income. Your employer may require you to use any available sick, personal or vacation time during your absence, but if you exceed your numbers of days off, you will not be paid under FMLA. This is why you need a short-term disability policy so that you can have income during an extended absence.

For more information on FMLA: http://www.dol.gov/whd/fmla/fmla-faqs.htm

Short-Term Disability

As part of your benefits package, many companies offer short-term (90 days) and/ or long-term disability benefits. My company did not offer its employees short-term disability, but partnered with an insurance company that provided a range of short-term policies at a discount. When my Migraines suddenly became chronic, I was concerned that I may need to take an extended period of time off of work. My Human Resources manager encouraged me to talk with an insurance representative to discuss my income options.  Eventually, my doctor did recommend that I take 90 days off work to try new treatments and I was thankful that I had put a short-term policy in place.

  • The short-term disability policy PAID me $100 a day for a maximum of 90 days.  You can chose a policy with a different payout award and the cost will vary based on the coverage you chose. It can be very affordable. I think I paid $10 a month for mine and it was worth the extra cost when I needed the income.
  • Typically the funds you receive from short-term disability can be used at your discretion for bills, groceries, medications, etc.
  • Many policies have a waiting period. Mine would not pay out benefits for pre-existing conditions until after a 12-month waiting period. Therefore it can be very important to have a policy in place BEFORE you actually need it.

Long-Term Disability (LTD)

Long-term disability insurance kicks in after 90 days, when a short-term disability policy has stopped paying. Again, this is a benefit that many employers offer at little or no cost to you, so talk to HR about your options.

I had every intention of going back to work after my 3-months on short-term disability had ended. But my condition hadn’t improved and new medical issues arose. My doctor decided it was not time for me to return to work yet. Luckily, my employer DID offer LTD. I was able to file a claim under LTD when my short-term policy ran out.

  • My policy pays me 60% of the salary I was making at the time I left my job on medical leave. Most policies cover between 50-70% of your salary.
  • As long as I provide my case worker with medical records, updates and continue to see my doctor, this benefit will be paid to me indefinitely if my condition does not improve.

Social Security Disability Income (SSDI)

The short-term and long-term disability policies I mentioned above are often offered through your employer or are available for you to purchase as an individual. On the other hand, Social Security Disability Income (SSDI) is a form of disability income offered by the Federal Government. Additionally, there are five states (CA, NY, NJ, RI, HI) that offer state funded disability insurance.

My LTD carrier required that I apply for SSDI in addition to receiving income from them. I started the process in February with the help of a consulting group that guides patients through the complicated SSDI maze. I’ve heard that doing it on your own can be very difficult and their help has eased a big burden. Also, they don’t get paid unless I am awarded benefits. They will also help me through the appeals process, which unfortunately is quite common.

Even though I have a private long-term disability policy, there are advantages to having SSDI:

  • Typically a SSDI recipient is eligible for Medicare.
  • At retirement age, your earnings from SSDI will count towards your lifetime earnings in regards to Social Security retirement income. Therefore the retirement income you receive will be greater than if you had just stopped working at a younger age and ceased paying into Social Security.

For more information on Social Security Disability Income:  http://www.ssa.gov/disability/

Paperwork

What I failed to mention above was the astounding amount of paperwork needed in every single step of this process. Once you file a claim, the insurance company or Social Security has to approve that your illness warrants a benefit payout. Approvals do not happen overnight and there can be gaps of time when you are waiting for a decision and not receiving any income. Planning ahead and having savings to cover at least two to three months of expenses is a widely used rule of thumb, but I know that it not always easy.

Keeping up with the paperwork is a full-time job. Staying organized and keeping detailed records is vital in this process.  But when you have a chronic illness there are days when you can’t make dinner, let alone stay on top of all the forms and deadlines. Consider using a patient advocate. These trained consultants can work on your behalf to file SSDI paperwork, to collect medical records, to talk to your disability case worker and help manage your financial future. The Patient Advocate Foundation can help you find an advocate to work with you: http://www.patientadvocate.org/index.php.

You Never Think You Need It…Until It Happens To You

I hope that nobody reading this will ever need to know about these disability income options. For many readers, their lives have already been changed drastically by a disability they didn’t plan for. Whether you’re healthy or you’re a full-time Migraineur, I encourage you to know what your options are and to plan for a day that we hope never happens to you.

Here are some other articles that may help you in your research:

https://migraine.com/blog/social-security-disability-insurance-benefits-the-basics/

https://migraine.com/blog/the-family-medical-leave-act-migraine-patients/

https://migraine.com/blog/10-things-you-should-know-about-chronic-migraines-and-applying-for-social-security-disability/

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • StanleyDenman
    7 months ago

    Very thorough and informative article. Would be of great help to the “working wounded” (those still working but wondering about the future).  Many would do well to read this article.

  • Vicky
    3 years ago

    I have FMLA for migraines, but there is a hitch. If I use FMLA, my manager will not let me make up my time. If I were to call in as an unexcused absence, then I can make up the time. Her reasoning is that we don’t get penalized for FMLA days. I double checked with our HR and was told that this is okay. Needless to say, I have very little benefit time. I feel like I’m discriminated against because of my illness.

  • Nicci
    4 years ago

    Ladies,

    As I consider my options as a self-employed person who has been struggling in a downward spiral for 4 years, this thread is incredibly helpful. Tomorrow I must make calls about private disability insurance. I should have had it LONG before now. 🙁 I’ve depleted a lot of savings. It’s not critical yet, but it could sure get that way. Thank you for all the links, Katie!

    And Sara… I have the EXACT same situation as you (but no husband or support, you lucky gal!). I have ‘silent’ migraines most of the time. I almost always have symptoms — actual pain I can kill, usually, but NOTHING gets rid of the sensitivities or fatigue or irritability — sometimes even rage if it’s menstrual (and perimenopausal!) Migraine. PM me if you need a battle buddy.

  • Sara
    5 years ago

    I have to say reading this is depressing. It doesn’t help that I’m not in a good place emotionally. Today is a PERFECT example of what I’m facing in my life right now that is making functioning so difficult. As I write this, I’m fighting back tears because I’m in an overly-uncontrollable emotional state. Yesterday, I went into an episode of rage because I knocked something off a shelf in the pantry while trying to feed my cat. My dear husband stepped in, took over, and told me to go lay down and rest my head. The rescue meds can relieve the head pain, but not the other side-effects of the migraine. Why does no one else seem to address this. I can deal with the head pain. Not the emotional out-bursts, the SEVERE fatigue, the light sensitivity, and the lack of cognitive function. All the pain-killers, Triptins, and Preventatives do not seems to alleviate these side effects.
    So, to my point. I’ve missed 3 days of work this week alone. I’ve missed 6 days of work this month. I am in a constant state of expiring FMLA and having to resubmit my FMLA paperwork because I’ve exceeded by 12 weeks for the 12 month rolling period. Part of the problem is work required mandatory 8 hours of overtime per week for April and May which really screwed me over.
    My current FMLA allows for 3 episodes per month lasting 1-2 days per episode. Every time I ask for it, while I get it, I feel like I feel like a druggy asking for a narcotic pain prescription. Every time I miss work, my husband’s first question is, “do you have time left”. Every morning I wake up with head pain, and have to figure out if this is head pain that may fade or worse with movement, assuming I can even wake up. This morning I couldn’t even wake myself up to call in until nearly 10 am. That’s the type of fatigue I’m dealing with.
    Sorry, I just really needed to vent this. I’m only 35 and I don’t want to go on disability. I’m already pretty sure my current career is ruined because of the FMLA. I was receiving promotions and on a path to moving up in the company 2 years ago before I went out on FMLA the first time. I just graduated with my bachelors in May, but cannot seem to get promoted at work now, and I am FIRMLY convinced (but have no physical proof) that it’s due to my FMLA.

  • Katie M. Golden moderator author
    5 years ago

    Sara,
    I know how you feel, I was in the same place over a year ago. Nothing was working. I was killing myself to go to work everyday, which only made things worse. Luckily my company was extremely helpful in my situation, but after a while I felt guilty about all the time I had to take off.

    The definition of madness is doing the same thing over and over again and expecting a different result. I had to stop the cycle. I chose to go on short-term disability (90 days) to see if I could make some progress during that time. I wanted to come back to work feeling refreshed and more in control of my Migraines. It was the best thing I ever could have done for myself. In my case, I was not able to return to work. I never thought I would be 33 and on disability. But I sincerely hope and work towards being a more functional human being and don’t see this as the rest of my life.

    I guess I’m saying that going on disability is a very personal decision and can be hard financially. But even just a small break from work could be helpful in managing the headaches and it could benefit not only you, but your family too.

    Think about it, prepare for it, and I wish you the best!
    -Katie

  • Lifetime_Migraine_Sufferer
    5 years ago

    Katie – thank you so much for the article. I’m on LTD through my employer and the LTD benefit plan actually excludes headache after a certain point. I can’t see where a “headache” is anything similar to the daily chronic migraines I suffer from and I do have some underlying diagnoses that can show physical evidence of my excruciating pain. What advice might you have for me in this situation where I’m facing a limitation on the number of months I can receive LTD due to “headache”? Is this anything you’ve ever encountered? Thank you in advance for your help!

  • Katie M. Golden moderator author
    5 years ago

    Lifetime Migraine Sufferer,
    I’ve never worked with Liberty Mutual, so I don’t know how they are to work with. Sorry you’re having trouble with them. Can you look into other private disability carriers? It may be hard to get a policy for a pre-existing condition, but it might be worth looking into.

    And I encountered the same boredom problem when I went out on disability. I felt pretty useless. So I focused on trying new treatments, especially alternative ones like yoga and meditation. And then I tried my hand at writing and found it was a perfect fit for me. I’m sure you’ll be able to find a hobby you’re interested in and can do it on your good days. If I hadn’t found these things, I would be driving myself up the wall with boredom and depression. Be adventurous- this is your time to redefine who you are!

  • Lifetime_Migraine_Sufferer
    5 years ago

    Katie – thank you for your reply. My employer’s LTD benefit plan excludes depression or mental health issues AND “headache”. I did apply for SSD in January b/c my employer requires it, but I haven’t heard anything yet. The benefit limitation for the diagnoses listed above is 2 years only, then payments stop.

    Liberty Mutual is the administrator for my employer benefit and they are horrible to deal with; not sure if anyone else has had them and feels this way too?

    Also, I am bored to death now that I’m on disability; I used to have a very high paced job, and now I find it difficult to get out of bed – so of course I’m depressed from my daily, chronic migraines as well.

    I wonder if anyone has suggestions about how to beat this boredom? I have constant pain so I’m limited in what I can do physically. Thx.

  • Katie M. Golden moderator author
    5 years ago

    I’ve never encountered a policy that had limits on the type of disability. Have you had anyone explain this provision to you? I’m wondering if your headaches are classified as Chronic, if that changes things. If not, I would find out what the appeal process is and start gathering data and doctor’s notes to plea your case.

    If you haven’t already done so, this may be the time to apply for social security benefits. It’s a long process, but this way you’ll be further along when your LTD runs out.

    Appeals and applications is time consuming, especially when you have a limited number of hours every day to get things done. I encourage you to seek out a lawyer or advocacy group that could help you through the process. Many times, they don’t get paid unless you are awarded benefits.
    -Katie

  • Katie M. Golden moderator author
    5 years ago

    Jamie,
    You bring up a good point about Life Insurance. I was lucky enough to have a policy through my employer. Once I became disabled, the monthly premiums were waived. So now I still have coverage and I don’t have to pay for it anymore. I have to certify every year that I still meet their disability qualifications. My policy doesn’t have a cash out feature like yours.

    But getting a life insurance policy once you are disabled and have a chronic illness can be extremely hard and really expensive. I’m glad your policy has been helpful to you. Having a life insurance policy could really help a patient’s family if there are huge medical bills.

  • kimberlyflick
    5 years ago

    After the last couple of months struggles, I’ve been considering my options with disability. What I’m understanding from these comments is that maybe I shouldn’t? I have such a hard time going to work once a migraine starts. But there are times when I have no problem and I cherish those days. I’ve never asked about short or long-term disability from my employer but it’s a small, independent business and I seriously doubt they have any coverage of this type. I don’t understand much about buying my own policy but I do know it would be hard for me to afford.

  • Katie M. Golden moderator author
    5 years ago

    Kimberly,
    Don’t let some of these comments discourage you from looking into your options. I didn’t want to go on disability either, but after years of struggling at work, I knew I had to make a change if I was going to get any better.

    Before I made the decision to leave work, I did some serious research on what my income options would be and I had to make some choices to ensure that I could live comfortably when I left. You should definitely check with your employer first. If they don’t offer short or long term disability, you should consider buying your own policy. The one policy I bought was under $15 a month. I know it can be hard to spend any extra money on something like this, but in the long run it could mean the difference between choosing your health and staying at work.

    Aflac and Guardian offer these policies if you want to look into it. There are others, but I’ve personally worked with these 2 companies and had great experiences. Having these policies can help bridge the gap if you decide to apply for Social Security since it can take quite a long time to process.

    If I hadn’t looked into these options when I did, I wouldn’t have any income now as I wait for the SSDI decision. Financial security is so important while you’re trying to get better. You have enough to worry about in managing the headaches!
    -Katie

  • Adamsgran726
    5 years ago

    I have coverage under FMLA, so I can keep my job. Last year, however, I made $4,000 less due to days that I had to take without pay. Hopefully, this year will be better. Because of my chronic migraines, I can’t get Long Term Disability thru the insurance offered by my employer (state of Georgia). I do have coverage for Short Term Disability. I’ve often wondered how much longer I can work & what will happen when I can’t. From other people’s experiences, I would probably lose my house, car & possessions before any money (SSDI or SSI) starts coming in.

  • Katie M. Golden moderator author
    5 years ago

    Adamsgran726- you should look into a long term disability policy through a private insurance company since your employer doesn’t offer one. You may not be able to make a claim right away since you have a pre-existing condition, but usually you can use it within a year of opening your policy.

    If you do apply for Social Security benefits, know that it can be a long process. My application has been pending since February. I want to make sure you understand that if you apply for SSDI (and not SSI), there are no income or asset restrictions. These benefits are tied to the money you put in to the system while working. SSI is different because it is available to those who have limited resources and therefore they monitor your assets. I just want you to know that you have options to protect your assets and not go bankrupt through this process.

    Good luck to you!
    -Katie

  • Katie M. Golden moderator author
    5 years ago

    Jamie,
    I am so sorry to hear about your struggles. You sound like one tough cookie! It’s also refreshing to hear how positive you are about the future.

    It sounds like you are on SSI and not SSDI? There is a difference, especially in how you qualify and how you get paid. I’m sure you already know this, but I thought I would share some info and links so that others can understand.

    SSDI is funded through Social Security taxes paid by workers, while SSI is funded through general revenue of the Treasury Department. Both programs are available for disabled persons, but SSI will only be granted to individuals who have limited income and assets. This is why SSI only allows someone to have $2000 in assets (excluding a house and car). SSDI does not have income and asset rules because award is based on a person’s work record.

    Here is a great article from AARP outlining the differences.

    http://www.aarp.org/work/social-security/info-06-2012/social-security-disability-insurance-supplemental-security-income.html

    You can apply for SSDI benefits even if you are receiving SSI benefits. It’s called concurrent benefits. However, if you’ve not worked in a job long enough or paid much into Social Security through wage earnings, you may not qualiify for SSDI benefits. Here’s a link that discusses this issue:
    http://www.disabilitysecrets.com/page5-43.html

    Jamie- this info may not be helpful to you, but I’m glad you brought it up since there is such a difference. Thanks for sharing your story. I wish you the best!
    -Katie

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