Heart pounding. Hands are shaking. Sweat rolling down my back. I can do this. It is not like the topic is foreign to me. I am preparing to speak for approximately 20 minutes to a Human Services Committee in our State Capitol. The lady next to me, someone I know, has offered to help me hand out speaking notes to the legislators. I have prepared myself as much as I can, my display is hidden and ready. I walk to the podium. Seems surreal. As I grasp the sides of the lectern to prevent an obvious display of my nerves, I began to speak. Rather than opening with my notes, I open with a heartfelt thank you. A thank you to the Family Voices organization in my state, a thank you to our Care Coordinator, a thank you to the facility, so many people and agencies to acknowledge. I hope
I make no secret. I love to communicate with people. When it comes to David, I like to receive as much as I can via email, as it lets me have a documented record of what facilities and I see to each other. However. If my son has done something that necessitates intervention by the on-call nurse, I don’t care if you have to drill a hole to the center of the earth. I want you to call me and tell me about it. Seriously. Something like that is not what a parent should be hearing about via email. The facility is taking corrective measures to ensure it doesn’t happen again. Yes, I was upset. But he is okay. And frankly his safety and well-being is all that matters. Communicate people. I would rather have you tell me that you have no idea what to do next, than be kept
David is on a track to potential discharge in March of 2016. I won’t go in to the ins and outs of his program. I don’t necessarily agree with discharge at this point. David has been having difficulties the last two days. And a couple of times over the last month. If his care and issues aren’t properly documented, my fear is that he will not get the care that he needs. His behaviors are escalating. Please, don’t do him any favors by not documenting his care. If he does something, please document it. It is the only way to ensure that he is getting the care he needs. We saw this in his last placement where things weren’t documented in the lodge/cottage/residence. He ended up being discharged against doctors orders because Medicaid said he needed to go home since he wasn’t making any progress and was not regressing either.