I am responding to the proposed changes to a program that was working perfect the way it was. It made a very positive impact on my daughter's life as well as my own. Having local personnel in the area where my daughter enjoys community experiences is very important to me. The two facilitators that we have had the pleasure of working with actually have seen us out shopping, in restaurants and at local softball games to mention a few. They witness the engagement that my daughter has in her community. They have been extremely helpful in making decisions in my daughter's care, answering my questions, helping navigate paperwork and helping me add apps to my phone. My experience with contacting CDCN for vital information has not always been a smooth experience. So please do not change the local personal touch.
I am making my thoughts known for the new sign-in and out app. I find it very stressful and that is not what I need to help me care for my daughter. I am a single parent of a precious young female adult with Down Syndrome with some lower extremity paralysis. My care is 24/7 without holidays off so entering my time is a snippet of my time commitment. I do not have problem with that but for me to have alarms going off to remind me to sign in and out is a true hardship. The alarm has gone off while frying eggs, bathroom for myself and my daughter, driving, while talking to my son on the phone who lives in a two-hour time zone difference, and my favorite taking off her many braces, so I stop to sign out then continue my job. The app does not reflect getting up at 2:00am because of a nightmare or 3:45am for a lightning storm or getting up at 5:30am then again at 6:25am for diarrhea. So why would I need I to be exact about the time if I am only giving the time that I am allowed. I would invite the people responsible for this new idea to try it for a week. I would strongly believe that the people responsible for making these changes have never cared for an individual 24/7 and experienced not having their own life. I always make sure she goes to the bathroom so there are no accidents. For example, going out to eat and making sure she always goes to the restroom, and you better have supplies to clean her and yourself up if there is an accident. I find that having my phone on me at all times to make sure I do not miss the alarms is frustrating. The other evening, I got up to take a shower and realized that I had 10 minutes before signing out so I had to wait 10 minutes before I could enjoy my shower. Again, it is a 24/7 commitment, and l am saving the state a lot of money by being my daughter's caregiver. Please make my job easier!