Totally agree with the points made. My husband just passed away after 11.5 years of ALS. Medicare should allow services based on a PALS needs, ALS does not fit a typical/normal disease progression. Medicare should also cover more home care to prevent CALS from getting totally exhausted and having health issues. I was a critical care nurse for 21 years and worked with an insurance company for six as a Medical Review Analysis, CPC and Fraud Investigation. I was blessed to have the ability to care for my husband and navigate insurance issues. I would gladly speak out to CMS if given the chance.