The wurster, the better

It seems that my wife has gotten to a point she was several years ago in our struggle to get appropriate education for our daughter. She is angry and emotional (more so than usual) over what our daughter is not getting. The way our daughter is being treated at school is not acceptable. This is primarily due to her behaviors and the fact that the school has no idea what to do. However, we now have some hope because the behavior plan is done with appropriate goals and objectives. I hope now her pain will ease.

But she will graduate next year as she will be 21 and then what? At this point we have no solutions but will continue the struggle and fight. And it is a fight or war as a friend put it.

Life is not easy. My wife does a lot and could make life a little easier for herself but can’t we all. I am trying to keep my own sanity in this insane situation so that I can keep my job and bring in the money we need. I appreciate what she does. I try to help out in the ways I can. I get criticized for not helping enough, but you can’t have two cooks in the kitchen.

And now, we have no TSS. We are back to where we were last year. It’s been suggested that we advertise ourselves and find someone who can be hired by our service provider. And the search has begun. We just need a little ad to distribute.

An interesting combination of terms, you may ask. Time marches on. There’s nothing we can do about it. We all get older day by day. We are presented with opportunities throughout the course of our lives and need to act upon them. They may only come once in a lifetime and so we need to be able to recognize this and make a rational decision at the time.

I’ve been reminded of responsibility lately, especially with the LiveEarth happenings recently. We, as human beings, are keepers of this planet. We are responsible for what happens to it. We cannot be selfish and only think about our short time here and consume and destroy as much resources as we can. We need to think about the future and our children and our children’s children.

So now maybe you see the connection between the two. We only get certain opportunities to do things and we need to be responsible in making these choices. We all make choices, some we regret. But regardless of the choices we make, we are responsible for them and need to take on that ownership.

I continually think about our daughter and the situation she is in. I should say that I think about both of my daughters and where they are in their lives and how their lives will be. I do worry about both of them, but they have different capacities for learning and living and making decisions themselves. My youngest daughter has disabilities and seems to not be able to make any decisions for herself. My oldest daughter is just the opposite. She is super intelligent and definitely has the ability to make her own decisions, as she has shown us since an early age. I worry that she lives in the moment too much and maybe doesn’t see the big picture soon enough.

But my real concern is with our youngest daughter and how she will spend the rest of her life. We have always wanted whats best for her and have tried to always have her meet these opportunities in the best way. However, we parents can only control so much. Other things are controlled outside our environment. We have struggled with this throughout her life, primarily in her education. You cannot assume that the system whatever one you may be in will be responsible for your child. You, as the parent, are responsible for them and their well-being. You are their advocate.

After struggling with our school district for several years, they finally realized that they could not provide the appropriate education for her. So, she was transferred to a special education school Elwyn. Things started off well, but transition is a hard thing for my daughter. So, it took a couple of months before she settled in to her new environment. But then something happened on a school field trip. She was traumatized. That was in December 2004 and she has not yet recovered. I am sick and tired of people not accepting responsibility for things that happen. We raise our children to be responsible. But when we get to be adults, morality seems to take a back seat in our decision-making. Basically, it’s not important it would seem. I need to say this now because it is eating away at me. Elwyn needs to step up to the plate and take the responsibility for what happened. It happened on their watch and they are responsible.

We have tried over the past 3 years to get the services that our daughter needs to come out of this PTSD (post traumatic stress disorder) and have met with blockades at several points. These problematic areas are the insurance companies, the behavioral health system in Pennsylvania, regulations and people who seem to be more intent on getting our child through a step in the process in order to meet requirements. All of this gets me extremely angry and upset. So I must vent.

Throughout the course of these years in our lives we have met many caring people. Unfortunately, they don’t have the power to make things right. They can just help and advise and make a difference. I am not a brainless person and saw a need to find out more about the system. I became involved in the CBHTF of DPW several years ago. The state saw that our system needed revamping and got people involved. We parents just want to see things happen faster because when time goes by, we loose needed services that should be given to our children. We can’t go back and say

“how about giving us double the services now since you missed the opportunity of helping our child before”.

For the past 18 months that we have been getting authorized behavioral health services for our daughter, we have actually only gotten 9 months worth of services provided. The rest of the time, our service provider was looking to hire staff to provide the authorized services and so were the other providers in Delaware county where we live. So, who is responsible here? Not our provider and all the other providers in our county. They were doing diligence in trying to hire staff. They all new about the needs of our daughter and other clients who were not getting the needed services. Just not enough people to meet the needs.

What about the MCO Magellan? They also new of this situation since they are the agency that authorizes services for our children. Did they do their best in managing this situation? They said they did and understood the situation and really didn’t have any solution to the problem. One thing I heard several times from our provider and Magellan was

“do you know anyone who wants a job?”.

So, they are not responsible.

What about DPW and the state? They are keepers of the rules and regulations that govern the mental health and behavioral health system in our state. But do they monitor the MCOs? Do they know that these situations exist? I wonder. On the one hand, they probably do monitor the MCOs and keep them accountable. But what does this mean to the children, their clients? It probably means that they make decisions to make them look good to the DPW, not necessarily meeting the needs of the children. What do I mean? Behavioral health services (wraparound) are meant to be transitional for only a short time. A need is seen and services are meant to help the parents cope with the situation. Over the course of time, the services are to be phased out. So, if the services are being phased out and being reduced over the course of time, the service provider looks good and so does the MCO. But is the decision to reduce the services actually meeting the needs of the client? I wonder.

Does saying that your child doesn’t need as many TSS hours as were authorized before mean they are getting better or transitioning to the next level better? Or does it mean that since you are approaching the end of the availability of these services for your child, we need to reduce the hours needed so that we (the provider) look good to the MCO in doing our job? If the TSS services had actually been provided to our daughter, I could see that there would be a way of evaluating success of the services. However, no TSS services have been provided during the previous cycle and so, in my mind, there is no validation in reducing the hours. In my evaluation of the situation, there would be a need to increase the hours to eliminate the regression our daughter has gone through.

The reduced hours in TSS would then be applied to an ICM to help us transition out of the children’s behavioral health system into the adult system. I certainly agree that this is important but not at the expense of TSS hours. Family counseling is also being recommended, as it was before. Sometimes I get the feeling that we parents are being blamed for the condition that our daughter is in. This upsets me a lot. So many things affect our lives. We try to do as much as possible to make things right. As parents, we are not perfect and accept that responsibility. We will go through whatever counseling is needed to help our children and each other. But maybe there could be a better way for service providers to work with parents under these situations. Sometimes, I don’t think the professionals really understand what a family goes through who has a child with a disability. Each family is different than another family. Applying techniques that one learns in school or through practice needs to be flexible and adjusted to meet the needs of each family situation.

I’m not trying to blame anyone. I just want us to be responsible and take ownership.

And now, insanity. We were just told that at our current service provider’s psych evaluation meeting next week, at which we either accept the evaluation or not, the new service provider will have a couple of TSSs for us to meet and select one. So, it looks promising that we will get the authorized services now for our daughter. However, my wife does not want us to question the evaluation but just accept it. And this is what we will do and deal with it later.

This, if I remember correctly, was kind of what happened last year. I was about ready to right a letter of complaint (to someone) when a TSS was hired and we were then fat dumb and happy that all was well in candyland. Then we forgot about our anger with the system and didn’t do anything. Now, the same situation is at hand and my wife wants us to accept what is presented. She fears that something is better than nothing, if we complain and then everything stops while someone arbitrates.

So, I will bite my tongue and be quite as a church mouse.

We had a nice holiday although the rainy weather stopped some things. It stopped my wife and daughter from going to the pool to get their free $400 water-ice. It was not pleasant driving home from my Mom’s house (I don’t like driving in heavy downpours). It made the people in Philadelphia unhappy when they were told to go home by the police and then the fireworks display went off after 11:30.

The saga with wraparound services not being provided for our daughter continues. Magellan contacted me after I told them that Elwyn could provide the needed services. According to them (since they had contacted Elwyn), Elwyn could not provide the services. They would continue to look for our daughter. The PIN advocate said she would also continue to look, especially since I had contacted them.

I asked PIN what was my next course of action. I asked if I should write someone. They suggested a letter to the Director of Magellan was appropriate. I wrote a draft letter and am waiting for a call back from PIN. I’ll also copy the Secretary of the DPW in Pennsylvania on this letter. We need to rattle the cages so to speak.

It was funny that our service provider did their evaluation of our daughter and us last night in order to apply for the needed services for our daughter which has to be done on a quarterly basis.

If somebody was going to give you $10,000 and all you had to do was walk around the block once or read a book, wouldn’t you? I certainly would. If you have been authorized to get 100 hours of occupational therapy (free), wouldn’t you take advantage of that? Certainly, as it could only help you in your medical situation. So, now I come to a similar situation with therapeutic services being authorized for my daughter, but there is no one to provide them for her.

We had this same situation happen last year at the beginning of the year. My daughter missed about 5 months of therapy because there was no one available to provide them for her. Now, we are in the same situation. It has only been 2 months that she has been without services. However, there is no indication of anyone being able to provide these services. Our provider is trying to hire people, but there is no one.

So, I will investigate further. I will contact the state agency (Magellan) who manages these service providers for more information. And then, who knows. It is all well and good for our provider to say they are doing all they can (which they are), but that doesn’t help my daughter. There has to be an answer, a solution, to this dilemma. I must try to find one and be persistent.

I heard this old Rolling Stones tune on the way home from our daughter’s riding lesson today. It seemed appropriate after a discussion my wife and I had. Our daughter has a lot of needs. As hard as my wife and I try, we can’t get what she needs. Why?

We have been without a TSS for 6 months. This is ludicrous or crazy (new Gnarls Barkley tune)! These are services that Magellan has authorized and that we are not getting. Why? Because the Network for Behavior Change doesn’t have anyone to assign to our daughter. It’s not our problem that there are not enough qualified support people in the industry. We have a right to complain to Magellan about this. But we haven’t because I’ve left things in my wife’s hands.

The BSC who was assigned to us was just replaced by NBC. Why? Because, I guess, they believed she wasn’t doing her job. I really don’t know. But now we have a new one. And now we are finding out that the services the previous BSC was supposed to have taken care of by applying for, were not done. So, it looks like our daughter will not be going to the Easter Seals camp in August. So, maybe she wasn’t doing her job.

Another thing, while I’m complaining, is that we really should have sued our daughter’s current school after the traumatic experience in November 2004. What is going to happen to our daughter? Will she be able to get the services and care she will need for the rest of her life? Do I feel that the school was to blame? Yes, I do. It was an unfortunate situation, but it wasn’t handled properly. People need to take responsibility for their actions. It cannot be as our children are sometimes apt to say when asked “who did that?” and reply “nobody“.

If I can’t do anything else, then I will complain here. And I really don’t care if NBC or anyone else takes offense to this. This is just the situation as I see it and I am allowed to my opinion.

Addendum:
I didn’t really expect anything to come from my rant, but it did. I got a call from the president of NBC. He wanted to see how he could help. We chatted for a while and I got a better understanding of what had happened. He also got a better sense of where I was coming from. Communications is the key. We have a plan and hopefully it will yield results. He wanted me to know that he is available at any time to work on the support our daughter is receiving. I appreciate that very much.