Greetings!  

I am the LRI for my minor daughter who has the ccc+ waiver. When my daughter was first approved for the waiver and we found out that I could be a paid attendant, we rejoiced. Given my daughter's extensive needs and my husband's demanding work schedule, it is nearly impossible for me to hold a job outside of the home.

As a LRI, I am alert on 24/7. I log 40 hours per week, but that does not account for the countless hours of services I provide that go well above and beyond the care provided by a parent for a neurotypical child. I am happy to provide this care and I love my daughter with all that I am.  The benefit of being a paid attendant makes an enormous difference for our family. I am able to provide support to my daughter so she can participate in the world around her. Whether this is making sure she uses the bathroom before having an accident, having acceptable hygiene, doesn't choke when eating or doesn't go into respiratory failure.  I also provide a level of supervision that other parents of 9 year olds would never dream of. I have to be by her side during all activities so that I know she won't run off and acts safely. She does not understand danger.  

We have never been successful in finding another person who can provide appropriate care for my medically fragile, intellectually disabled, eloper who has limited communication. I encourage those who make decisions regarding waiver services to visit people who are caring for their children. It is intensely demanding. Please quit trying to make our lives more difficult.  Logging in and out of the EVV app every day is unnecessarily cumbersome. I started logging into EVV in September to get ready. While I do find it easier, the constant penalties for adjustments is frustrating. My main priority is my child!  Sometimes we are so busy I forget for a few hours. At that point I have already provided multiple services. I am not opposed to the app, but we need to be able to make changes without penalty. 

Most of the other proposed changes do not affect our family right now. But I beg you to consider the unnecessary burdens you place on families who are doing the best we can with the hand we've been dealt. 

Thank you for your time and consideration.