I have been reluctant to express my feelings these past months since last August because I felt if I started, I would continue on and on. But now, I just have to. And I will go back in time and construct posts from the many notes I’ve taken. My daughter was hospitalized last August for almost 4 months. She had a breakdown. The saga of what happened since that time is interesting and dumbfounded and perhaps of interest to others who have children with mental and behavioral issues.
So, let me start with something that happened last week. Our daughter gets wraparound services from a provider in the Delaware Valley. There was a discharge plan and they were supposed to meet our daughter’s needs. Since our daughter came home right before Thanksgiving, the service has not been consistent. This inconsistency has affected the transition of our daughter as was deemed critical by the hospital team and her discharge plan. But, as we knew before she was discharged and over the past months, what should have been was not. What we, as parents, thought was needed was not provided. And there is no accountability which is a serious problem as I see it.
Since our daughter was discharged to us at home, the criticality is not there as would have been if she were discharged to a facility of some sort. There, the services would have to be provided. In our home, if they are provided then great. If they are not, then that’s okay too. As the provider will just not be billed. Something doesn’t jive with what we parents want for our children and what the provider actually provides.
If someone is supposed to come to our house 4 hours each day, then we expect that. We would like to be contacted if that is not going to happen. We would also like something to be put into place to avoid such a situation. If they know in advance that someone can’t make it, then they should find someone to replace that person. This is just the way schools work when a teacher is going to be absent. You can’t have a teacher-less classroom. That won’t do. We can’t have a daughter without services. That won’t do.
Our daughter was supposed to get at least 30 hours of service each week since she was discharged. I would say that for at least a third of the time, she hasn’t received services. And once the week is over, you can’t go back and provide her more services the next week. Consistent services are required but the provider is not accountable. I will say again that if they can’t provide it, then they just don’t bill for those services. They are not truly thinking about their client and his or her needs.
In my strange way of thinking, we parents should bill the provider for services not provided. That would then give the provider an incentive to do what is right and supposed to be done.
So the week before last on a Thursday we had a team meeting about services with all parties involved. We all appeared to be on the same page. But I guess we weren’t. We didn’t have any TSS come to our house on last Saturday. And we got no call from anyone. Then on Monday, when the Monday/Wednesday/Friday TSS came, she told us that the Tuesday/Thursday/Saturday TSS was no longer on the case. She said that she would pick up Tuesday and Thursday for the next 2 weeks while a new TSS was found. This was the first we knew of the situation. We didn’t hear it from the case manager of the provider but rather from the TSS who was hired from a temp agency. This is not right!
We had to call the case manager at the provider to find out what was going on – again. So, that was Tuesday this past week. On Friday morning, I hadn’t heard anything and so contacted the TSS who comes on Sunday to see if she could come on Saturday (today). She said she could but that the provider case manager would have to authorize this. I spoke with the case manager and told her. She said she would pass this on to the staffing person. Did I believe that this would take care of the situation? No and I was right. There was no TSS on Saturday.
What is their problem? This same thing happened in the past. This can only bring me to the conclusion that they just don’t care about our daughter as we do. It is a small and simple thing to make a phone call. We will see the TSS today and find out what happened or should I say, what didn’t happen.