This proposal is clearly created by people who don't understand the daily hardships of caring for someone disabled. My severely autistic and non-verbal son is 16 years old. Taking care of him spans far beyond ordinary household tasks of cleaning and cooking. With his being in his teen years, his behavioral problems are worsened, and 24/7 supervision is needed to maintain his safety. Not only is he extremely mentally unstable, but also he is now much taller and stronger than I am. Taking care of my son is a demanding responsibility that requires all of my strength and time. Even in his sleep, I need to be there to stop him from shredding and eating his pull-ups, wetting the bed, or undressing. The cap of 40 hours per week is absurdly disproportionate to the amount of work I do to raise him. 40 hours per week for just me does not even remotely cover the many hours of supervision my other child and spouse have to contribute to keep my disabled son safe, from himself as well as others. Instead, the number of hours should be determined by the disabled child's need on a case by case basis. 

Regarding the EOR, it is incredibly unnecessary and inconvenient for someone out of the family to approve the hours. Why rope an unrelated individual into the care of my child when my spouse is perfectly capable of approving the hours? We know best the amount of work we do and the number of hours we put in. 

In all, my family and I appreciate the mission of this program to aid parents in supporting their disabled child. But capping the hours and requiring an unrelated person for the EOR are only more barriers stopping families from giving the best care for their children. I hope that Medicaid refocuses on their efforts on easing the struggles of families like us in caring for our disabled children and NOT on obstructing proper care like they are doing now.