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?
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:
I wish I had more helpful advice to give you. Good luck! Please keep me updated.
Readers, what other advice would you give Seymour? What have I forgotten or misstated?