"My son Rob is 23 years old. He follows politics, enjoys sips of whiskey, and loves baseball. He also has a rare form of dystonia, a feeding tube, and a tracheostomy, among other pre-existing medical conditions. He uses a speech-generating computerized device to communicate with us. If the Affordable Care Act (ACA) were struck down by the Supreme Court after the addition of Judge Amy Coney Barrett, a mother of a disabled child herself, Rob would be uninsurable, like so many of his disabled peers" READ MORE
"My husband and I have been placed in a no-win situation by Maryland. Now, our financial future is pitted against our love for our son.
"The Disability Integration Act would compel states to fully integrate adults with disabilities into their communities. Now, conflicts among agencies often pit the strained finances of parents with disabled adult children against the legal might of states that prefer an easy default: keeping disabled people locked away."
8/21/18 Who Lives Like This: Jason, Elizabeth and Jeneva had a lively discussion about the labyrinthine path to diagnosis, the conflict of knowing or not knowing what's happened to your child and the randomness of rare genetic mutations that might be "discovered" but have no applicable treatments.
This video introduces my advocacy for my son Robert, who has a rare disease. Rob's diagnosis arrived over the course of 14 years of scientific advances in genomics. Rob & I don't quit. #healthcarevoter #dayinthelifedisability