About my husband's ALS Association team
Rob is supported by the staff at the ALS Association in Oregon/SW Washington in his journey with ALS/Lou Gehrig's disease.
Patient Services: Our local ALS Association serves nearly 300 people and families living with ALS, including our own. The ALS Association has helped my husband to obtain equipment, navigate complex social security and medicare issues, and connect with others affected by ALS.
Life Support in-home care: in later stages, living with ALS requires someone to do everything for you. Living on a ventilator for breathing support and a feeding tube for nutrition requires 24/7 specialized in home care at a cost of around $100,000 a year in our state. The ALS Association in our state needs additional funding to pilot an in-home care project to begin to fill the total lack of paid in-home care available to most people with ALS.
The ALS Association makes public policy changes happen. The ALS Association was key in bringing about fundamental changes to the way Medicare Benefits are delivered to those with ALS. If Rob had been diagnosed with ALS just a few years ago, he would have had to wait at least two years before receiving Medicare coverage.
In 2000, the President signed into law The ALS Treatment and Assistance Act (HR 353), legislation waiving the two-year Medicare waiting period for SSDI-eligible individuals with ALS.