Hello! I am writing on behalf of a good friend who is currently on FMLA leave taking care of her mom with ALS.
In her words, her mom “is a real spitfire and an inspiration. She is still lobbying for ALS/ADA rights. There are a LOT of laws that actively work against the needs of our most vulnerable citizens. My mom is slated to go to Albany and DC this year to talk with our lawmakers about what they can do to make this journey easier on people. (My mom has an entire handout devoted to the waiting period between applying for and receiving disability social security. Do you know it's 5 months? People who have catastrophic illnesses could be dead or homeless before then. It's an awful, cruel law.)
It's hard to have a rare, complicated disease and many of you have asked what you can do for me. I finally have something! A recent bill has been introduced in the congress: the Rural Access to Hospice Act. (My mother is currently eligible for hospice care, but we have opted out because, depending on your location, there may only be one hospice option. We are 70 miles North of NYC and we only have one company available. It's bleak. They won't provide some of the necesary equipment for her care and choosing hospice would be a cruel, slow death for her.) One of the rules of hospice is that you cannot keep your doctor: you must use the hospice doctor. For many rural people, this means hours in a car, as there is only one hospice option "near" them and paying out of pocket to see their old doctor is not an option, because many illnesses drain your financial resources. This act would allow people to see their doctor while under hospice. It's one teeny tiny step towards correcting the laws in our country that govern healthcare, but it is a step. It's bipartisan sponsored and low budget. Please, please please call your congress person and ask them to cosponsor the Rural Access to Healthcare Act. Have your friends and family call. End of life care shouldn't be a punishment for people who have suffered enough. I hope this is the beginning of some real change.”
I would like my reps to consider this bill.