Petition updateTell ALS Association: Improve home care for ALS patients immediatelyWould more ALS patients have a tracheotomy if Medicare provided adequate home care?
Catherine ScottMurrieta, CA, United States
Jul 8, 2016
It's time for us to advocate again. Medicare must increase its home health services benefits ASAP to equal those provided by Medicaid. This is the second part of our petition and, most likely, the most difficult and time consuming to accomplish. ALS tracheotomy patients require 24/7 care, and those in the middle class find themselves in impossibly difficult situations when attempting to secure enough care to remain at home. They have too many resources to qualify for Medicaid but not enough to pay the exorbitant home care costs out of their own pockets. What happens to them when Medicare doesn't provide the coverage necessary? How about if they're not millionaires or don't have an army of family and friends to step in? What then? It basically comes down to two choices: 1) Die before they're ready to, or 2) Take drastic measures to qualify for government programs, including Medicaid, by declaring bankruptcy, getting a divorce, etc... In the state of California, Medicaid approved TWO eight-hour shifts of skilled nursing PER DAY for my mom before she passed. That's 112 hours per week. In contrast, Medicare pays for a maximum of 35 hours of home care combined. That's a difference of at least 77 hours. 77 hours!!! Not to mention how difficult it is to navigate through the Medicare approval process... I'm asking for everyone's help and support to get this done. I'm also asking for the ALS Association and Center for Medicare Advocacy to lead this effort. Increased Medicare home health services benefits can and must be accomplished. ALS patients' lives are on the line...
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