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A few weeks ago I received this comment/question at one of my older blog posts. Rather than respond there, where very few people would see it, I thought I would respond here.
I was diagnosed with PPMS in NOV 2011. I am a public high school teacher and use a scooter all day. I use a wheelchair around town. Some days I can barely type enough to sign in to my computer to take attendance. Unfortunately, I am the only fully employed person in the house. I don’t feel like I can even consider disability because of the insurance issues. My husband takes me to work and the kids to school each day, goes to his part time job, then picks us all up and takes care of our evenings. Any suggestions for making our situation better?
Seymour
Dear Seymour,
I’m sorry to hear about your difficulties. Unfortunately, your situation is not all that uncommon for people with MS, and highlights the fact that the medical model in the United States is seriously flawed. I’m not sure if Obama Care is the optimum solution, but I know that we need to do something to decouple health care from employment. Every other developed nation in the world already has.
I assume you live in the United States, and I assume that you would receive disability income through Social Security or your school, or both, if you were to go on permanent disability. Now is the time for you to research and completely understand those potential benefits.
I understand that your full-time employment is the only current source of medical insurance for you, your husband, and your children. If you need to go on total disability at some point, due to progression of your MS, there are several issues of which you are already aware. First, how will you, your husband, and your children obtain health insurance after you stop working?
Depending on which state you live in, how much disability income you would receive, and how much income your husband would earn from his part-time work, you may qualify for Medicaid health insurance benefits or other similar state programs. However, many states are considering cutbacks in those plans. Again, now is the time to research and completely understand your potential benefits.
Your employer may be required to offer you COBRA insurance coverage if you go on disability, but those premiums can be prohibitively expensive given what will be a reduced income for you. You should also speak with your local teachers’ union or your state’s teachers’ association to find out what disability and medical coverage benefits they may offer.
If you have paid Social Security taxes, which many teachers haven’t, and qualify for Social Security Disability, you will be eligible for federal Medicare two years after you begin receiving Social Security Disability benefits, which is six months after you stop working. So in the short-term, your medical insurance situation would be no better than that of the rest of your family, but in the long term you would receive Medicare benefits for the rest of your life.
If you have very limited income and resources, and are disabled, no matter whether or not you have contributed to Social Security you may also qualify for Supplemental Security Income, which would provide you with income and Medicare benefits immediately. But neither Social Security program will provide medical benefits for your family.
I know of several families that are in your situation – the person with MS is the only one with medical insurance benefits for the entire family. Of course, the most practical solution for you is to have your husband find employment which includes family medical insurance benefits. I know, however, that in the current economic climate this is much easier said than done. But I suggest that you and your husband pour as much energy as possible into making it happen, if you haven’t already. Be creative. Broaden his job search into career areas that he might not have otherwise considered. If he can secure this type of employment, that will free you up to stop working when and if your health dictates it, rather than holding on longer than you should.
The other approach is for you to find ways keep working as long as possible. Don’t be shy about requesting reasonable accommodations from your employer. The National Multiple Sclerosis Association provides an excellent resource for people in your situation:
http://www.nationalmssociety.org/living-with-multiple-sclerosis/employment/index.aspx
I wish I had more helpful advice to give you. Good luck! Please keep me updated.
Mitch
Readers, what other advice would you give Seymour? What have I forgotten or misstated?
Great detailed info, Mitch–I can't add to that department at all. My comment would be to say that I encourage her to work as long as she can because it is good to feel productive, even if someone doesn't need the money or the benefits. I've got volunteer stuff I can do lined up in case I can't work any more. In addition to exploring all the options you mentioned–information we should all be gathering for ourselves–it's important to learn ways that conserve energy.
I use two methods for this express purpose: laughter and LDN. LDN relieved a large amount of my fatigue almost immediately and continues to do so after 8 years, and laughter is–well, it's just the most important healer I have.
I have lists of things that make me laugh and I make sure I get at least one hearty, from-the-gut laugh every day, not to mention plenty of chuckles. Even faking a belly laugh does something positive for the body, but of course, the real thing is pure magic.
I know this sounds like pie in the sky but I am absolutely serious.
Daphne,
I get what you're saying about laughter, and I don't think it is pie-in-the-sky. I've heard similar things myself.
I would add she needs to utilize her physical therapy benefits. She is probably sedentary since she is a teacher. They can show her exercises that can give her more energy, flexibility, energy saving as well as stimulate her brain to create new neural pathways so she can continue to remain active. Also if she has a church contact them they can help her and her family in many ways especially support so she doesn't feel so alone.
If you decide to explore going on disability, becaus it is a disability & healthcare, you have penalty free access to retirement plans such as 401Ks & IRAs if you have any.
This might help you or cover your COBRA premiums until your Medicare kicks in.
I'm not saying it is a viable option but one well worth exploring.
Myself, I was on disability years before getting the diagnosis & officially there still is no mention of MS in my medical records … A whole slew of other issues come when a medical record says MS (things like driver's licenses), so the neurologist says I'm already on disability, don't need the diagnosis for treatment, so for now it doesn't need to be "official".
Should have included, that access to 401Ks & IRAs is for both yours & your spouses.
The penalty free access is for healthcare expenses of the family not just the account holder or the disabled member.
Latchon,
Excellent points!
Anonymous,
Thanks for pointing that out. I took advantage of this fact when we purchased our new house. Now, however, I'm trying to resist the urge to dip further into my IRAs, because our current income seems to be covering our current expenses sufficiently, if we are frugal.
However, as you point out, this is an option for people like Seymour to consider if necessary.