The wurster, the better

I’ve been in and out of having energy to do what needs to be done. And so I write. Things have been going smoothly for the last several weeks with wraparound services. That’s one less thing to worry about.

We had our youngest daughter’s last IEP meeting this past Wednesday. It went well. OMR needed some additional psych evaluation information and the school will be doing it. Other than that it went smoothly being the last one in Alicia’s education career.

One thing was mentioned by our daughter’s psychotherapist, that was very poignant but unfortunately can’t be done. She mentioned and echoed that our daughter was really learning now, and that it was ashamed that she lost a couple of years with no improvement/progress and now has no where to go from this point on to continue learning (her education). Everyone agreed that it was unfortunate but once in the adult system, education to this degree is not feasible. The only possible solution would be to sue the school district and get compensatory services which would allow her to stay in the children system for a while longer.

We won’t be doing that but it is ashamed that now that our daughter is in the correct environment and is learning, this will end in a few short months.

And on a related topic, we will be applying for an autism waiver for our daughter with the help of an advocate since it appears that more funding is available through autism. We hope to identify the steps we need to do when we meet with the advocate this week.

And our oldest daughter went to Italy with a friend yesterday for spring break. Ah, thos were the days way back in graduate school. I know she’ll have fun.

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.

We had Alicia’s TSS and BSC over today to work with Alicia. Unfortunately, the time could have been spent more productively if our daughter had been more focused. But she wasn’t. Why? She has gotten into a bad habit of holding herself in and not allowing herself to go to the bathroom. This takes her out of and away from whatever she is doing.

You may ask “how did this bad habit happen?” Well, we are not sure but we have some ideas. It didn’t start at how. It started at school. A lot of things have been the result of things that have happened while our daughter is at school. There, I said it. That’s how I feel. I am really tired of treading carefully when it comes to this. Someone needs to take the responsibility of what has happened. We parents and family have been suffering through the consequences of the school’s actions for over 3 years now. It has affected our family tremendously.

From a simple choice of not calling us parents during a certain situation, we are all suffering. Now, another situation has occurred whereby the school just doesn’t know what to do with our daughter. We have gotten the school district involved and they provided a behavioral specialist who performed a FBA and drew up a behavior plan that the school is supposed to be following. And the specialist is supposed to be monitoring the school’s performance. Is it working? Not 100%. But I guess it is moving forward.

I would hope that the school would be more supportive of our daughter’s differences. They shouldn’t ignore her need to go to the bathroom and they should take whatever time is necessary. I feel that their dealing with this situation or should I say not dealing with it, is the cause if the current situation. Can I prove it – no. But logically, that is what I conclude.

These are just my opinions.

Last week was Alicia’s week going to day camp. It sort of didn’t work out because the staff didn’t understand Alicia nor how to handle her (and sometimes we don’t either). It would have been a much better situation if she had gone to camp from the beginning. Maybe next year.

Maria has been working hard on visiting other schools for Alicia and working with our education consultant a lot. We’re trying to do what she has recommended. But don’t know if we have enough time to make it all happen for September.

The new TSS and BSC seem to be working out fine. However, with both of them being pregnant, consistency would seem to be hard to accomplish. But time will tell.

We have gotten a new advocate from UCP – PA Elks. She will help us in the transition to adult services with Alicia. This transition to adulthood and the services that may or may not be there scares the heck out of me. I don’t have a warm and fuzzy feeling about the future. I don’t even feel good about the present. And I certainly don’t feel good about the past.

The transition between service providers seems to have gone smoothly. However, the old NBC provider was supposed to get an ICM for us, which has not happened. The old NBC provider also wanted us to go to couples counseling or something, that is not clear. I don’t know where this stands. I think we need to run these items by our consultant.

We had a good pizza outing this past Sunday with the Chester County Support Group families. It was good to do this after having a summer off for 2 months.

This week we have two doctor’s appointments (her psychiatrist and neurologist). More to follow.

A line from one of Hannah Montana’s songs. Yes, I watch her show, along with many other Disney channel shows that my daughter and I watch every night.

We saw the High School Musical, the show, last Sunday. It was great. Alicia really enjoyed it. A friend from high school went with us. It was very nice. We hope to see her one more time before she goes away to Bloomsberg University.

We’ve been struggling the last few days with trying to move the process along in getting our daughter the correct services/education for her. We trust that with the guidance and help of our educational consultant, that we will prevail. We need to keep the faith.

We met our new BSC tonight. She is very nice and we look forward to a great experience with her and the new TSS and our new service provider Devereux.

I came across a couple of new resources for people with disabilities.

Disabilities Rights Network of Pennsylvania
www.drnpa.org
1-800-692-7443

Bureau if Autism Service of the Department of Public Welfare (in Pennsylvania)
www.autismpa.org