Or, why I need to have a fundraiser for my care*
The very next thing on my financial advisor’s list for me in autumn 2017 was long-term care insurance. However, I got my ALS diagnosis before I started the process, and my financial advisor said, “Now you can’t get it anywhere at any price.”
The irony of out living my prognosis and the standard ALS statistics (2.5-5 years from diagnosis) is there is no agency to fund my care. Medicare doesn’t, nor does my supplemental medical insurance. The ALS Association doesn’t fund home care, and neither does the Steve Gleason Foundation. I could spend down my assets to no more than $$2,000 and go on Medicaid, which does fund home care at a terribly low hourly rate. But given the look back period (5 years in Washington state), I would likely die before I finally qualified.
I have exhausted all sources of funding available to me over five years of paying for caregivers. These sources have included savings and taking the maximum possible accelerated death benefit from my life insurance policy.
What really must happen in this country is for Medicare to cover home health care. That would allow people to stay in their homes without having to impoverish themselves. However, it won’t happen until Democrats control both houses of Congress and the White House. Until then, I urge you all to purchase long-term care insurance.
Blessings
*A huge thank you to all who have contributed to my GoFundMe campaign. This truly is a public service announcement — not a sales pitch.
Jennifer Love
Dear Jess,
Thank you for drawing my attention to this post, and thank you for writing it. I’m sorry that there is no agency to fund longterm in-home care for ALS. The situation clearly needs to change. In the meantime, I appreciate all that Sephrah and you are doing to keep your friends and family members updated on the need for funding for your care.
Much love and warm hugs,
Jenny