Planning for the Long Term: Taking Action Today

I was diagnosed with primary-progressive multiple sclerosis in 1997. "Progressive" means that the disease, well, progresses. I am now functionally quadriplegic, having only partial use of one arm. To write this I am using speech-to-text software on my iPad. I also use my iPad to control the lights, heat, music and door locks in my house. I have been a wheelchair user for 12 years. I am unable to perform any of the activities of daily living (for instance washing, dressing, toileting, eating, etc.) and am completely dependent on home aides to help me with everything. Yet I continue to live alone in my own house.
 
The home aide who arrives first thing in the morning gets me out of bed using the ceiling-mounted overhead lift. She (most but not all home aides are female) then showers me, dresses me, makes and feeds me breakfast. Other aides give me lunch and dinner, wash my clothes, do other errands for me and put me into bed at night. Without the daily help from my home aides, I would have to live in an institution.
 
I was fortunate that through my last employer I had the option to purchase long-term care (LTC) insurance, but like most LTC policies, mine has a lifetime dollar cap. Mine will run out in less than four years. I am 58 years old. Through Social Security Disability Insurance (SSDI) I have been on Medicare for some time – but Medicare does not pay for home aides. For over two years I've been trying to get onto Medicaid which has a very low income eligibility requirement, but covers many aspects of long-term care including home aides. I have now set up a Special Needs Trust (SNT) which is a way of sheltering assets and income for Medicaid purposes. There is not space to go into the details here, but essentially an SNT is a means of deferring bankruptcy until death instead of spending down first in order to receive Medicaid. But it's complicated and there are many restrictions and limitations.
 
It seems that many of the things we’re told to do to be responsible citizens work against us when trying to get Medicaid. In fact, the obstacles to living in one’s own home in the community, which is the stated aim of the Supreme Court decision Olmstead v. LC and most modern policies, are so great that it becomes financially impossible to live in a community – and a nursing home is the only remaining option. If I don’t qualify for Medicaid soon, I will use up all the remaining funds in my LTC policy. I will then have to use the remainder of my savings for long-term care, and then when I run out of money, I will qualify for Medicaid. This is the so-called “Medicaid spend down.” To qualify for Medicaid will make supporting my daughters (ages 16 and 13) very difficult; Medicaid will have a lien on my SNT, and if I am not bankrupt before I die, the lien must repay what was spent on me, leaving no estate for my daughters to inherit.
 
For people with progressive MS, long-term services and supports (LTSS) may be needed for decades after diagnosis. Even for those with the option and ability to afford private LTC insurance, there is no private insurance that I am aware of that would provide the necessary level of support.
The costs of LTSS are so high that very few people can afford it on their own. This leaves people like me with the following choices: bankruptcy, nursing home, or both. We as a country simply have to do better.
Though only an estimated one-fourth of people with MS will need LTSS, many people with primary-progressive MS like me will need it sooner – rather than later – and for a longer period of time. The need for more affordable, flexible LTSS options also impacts millions of other families living with chronic or disabling diseases, not to mention the fact we have an aging society that will require more and more LTSS. Raise your voice as an MS activist and sign this online petition to remind Congress to address LTSS and create more realistic long-term care options. I’m proud to say I’ve already signed.
Tags Activism & Advocacy, Healthcare, Insurance & Money Matters, Progressive MS      10 Appreciated
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Michael

Michael Ogg

A former professor and researcher in physics and software engineering at major U.S. and Canadian universities, employee at Bell Labs and Chief Technology Officer at a New Jersey start-up organization, Dr. Michael Ogg was diagnosed with multiple sclerosis in 1997. Since then, he’s become an MS activist for improved accessibility and ADA compliance, active volunteer support group leader, speaker at high-profile special events, and published author. His essay entitled “Running Out of Time, Money and Independence?” appeared in the journal Health Affairs in January of 2011 and received the 2011 Best of Award in Family Caregiving by the Family Caregiver Alliance; the essay described his life at home with a severe disability and was also covered by The New York Times. His “Hard Lessons from a Long Hospital Stay” essay – focused on issues affecting people with physical disabilities during hospitalization – was published in the April 2012 edition of the American Journal of Nursing.  

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    10 Comments

  • Avatar
    THERESAF  Jun 14, 2013 12:11 PM
    GOOD!
    I HAVE SPMS AND USE A WHEELCHAIR
  • Avatar
    THERESAF  Jun 14, 2013 12:27 PM
    MY HUSBAND TELLS ME THAT HE IS ALL THE HELP I NEED. I DISAGREE. I HAVE SPMS AND NEED HELP WITH EVERYTHING!
  • Kathy   Jun 14, 2013 12:37 PM
    I think you are terrific.

    I was diagnosed with PPMS 5 yrs ago at 53 years old. I went from a can to walker ( which I can still use in my home) to an electric scotter when I am outside my home.

    I thought I came to terms with PPMS, but I think I just begun. How do you keep positive? I recent;y wen out on medical leave. I have worked at the company 31 years. It is a difficult transition.

    Typing ,etc is difficult with my right hand, I am right handed. Everyone says to use my left hand. Easier said than done. I am sure you get that.

    Stay well.
    .
  • Avatar
    THERESAF  Jun 28, 2013 7:28 AM
    I THOUGHT THAT IF I DON'T DO DRUGS - NOTHING BAD WOULD HAPPEN.
    I WAS WRONG 'CUZ I GOT MS!
  • Avatar
    THERESAF  Jun 28, 2013 7:28 AM
    I THOUGHT THAT IF I DON'T DO DRUGS - NOTHING BAD WOULD HAPPEN.
    I WAS WRONG 'CUZ I GOT MS!
  • Avatar
    THERESAF  Jun 28, 2013 8:15 AM
    IT'S SCAREY NOT TO BE ABLE TO BE STRESS-FREE!
    I NEED TO BE TAKEN CARE OF.
  • johan   Jul 3, 2013 6:28 AM
    I was diagnosed with secondary progressive relapsing remitting MS in 2012. I said to my Dr. I thought it was primary progressive MS. He put up his hands and said ”well, I guess we got nothing to talk about.” I haven’t seen him medically since. I was 43 when diagnosed. Trouble with walking began on 2011. I’ve been using a cane for about 6 months now. I wonder how fast the progression will go. I wonder how bad it will get. I wonder if I can stop it, or better yet eradicate it.

    What about the people with no money, no insurance, no family? Thank god for family. Reading your article, Mr. Ogg, I thought about a cosmic shift, a necessary transition, a revolution if you will, in this fine country the USA. I thought of other things too, god bless you by the way Mr. Ogg, your daughters too.
  • Darlene   Jul 8, 2013 10:10 PM
    Wow!!!! I really take my hat off to you!
    Being in a wheelchair and being totally dependent on others but still
    Live alone in your house is amazing!!!!

    My sister was dx with Primary progressive ms 5 years ago.
    She is still mobile - but only a little. She seems to be dragging her feet, the left more then the right. But unfortunately her mental state is that of a 10 year old (she is 32).

    Again - keep up being so positive!

    Regards
    Darlene
  • SARA McCLOSKEY   Jul 28, 2015 12:51 PM
    I WAS DX 2010 AFTER A SERVER INFECTION FROM SURGERY.I AM 60 YR.FEMALE MARRIED TO A WONDERFUL MAN WHO DOES EVERYTHING!! I NOW HAVE SPMS?I WAS A VERY HEALTHY WORKING STRONG ,OR,PACU TECH IN NY LI HOSPITAL,NOW I CAN'T WORK AND HAVE LOST MEDICAL OUR SAVINGS TO MEDICAL
    BILLS......
  • Karen   Mar 22, 2017 7:45 AM
    I have MS lost jobs , house, divorce. unable to get disability just cause I look fine. I cannot make a bad day happen.