This is my 2nd update on my original story regarding additional PAS (personal attendant services) hours for my son who functions at the 40 month level at age 28 and spends 24/7 with me after trying 3 disastrous day service programs – you just have no idea how poor they are. We had the appointment and even though he had been approved by the state over 2 years ago for the additional hours, Sunflower has denied the additional hours because from what I gather from the email, they consider me to be “supervising” and I would need to take him out in the community, which would be very difficult for me to do by myself, in order to possibly be considered for additional hours. My son needs help with nearly everything and needs to be checked on if he leaves the room, is in the bathroom, is upstairs, if I hear anything drop or fall and because he is non-verbal after spending 6 months in a day center, it is constantly like a game of charades. I have to develop activities for him because unlike the day center, I am accountable for what I do or don’t do with him. I had no idea what KanCare would do.
In Kansas, people with DD were already shorted in every which way possible and who would have thought it would get worse but by golly, it has. As the companies struggle to make a profit, it will continue to go down hill. Our denial is going to the state for review and after the decision, I will post again. Also, today after finally navigating the phone system, I checked to see what the status was on our grievance filed 6 weeks ago. I was told that I was sent a letter and I am guessing that letter must be with the one that informed us of who the new case manager was with the MCO and I have yet to see either. I know they have the correct address because every time I call, I give them the address.
While we will survive this, I wonder what will happen to those that cannot advocate for themselves and have no one stepping up for them. Maybe Governor Brownback can watch my son for a few hours a week to pick up the slack! Well, I’m going to ask.