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.