The wurster, the better

I get so overwhelmed by pretty much everything that I don’t really accomplish what needs to be done. I seem to work on things that I like and want to do but these don’t necessariyl help out in our daily lives. But that’s human nature. I need to think more about what needs to be done and what I can control. I can’t make anyone else do what needs to be done, only do the right thing and hope the system will work.

June is rapidly approaching and with it my daughter’s 21st birthday and the beginning of new things for her and us as a family. We are trying our best to be prepared for what the future holds but seem to be blocked at places by the system. We’ve been trying to get a special needs trust set up for our daughter since August 2008, but it still isn’t complete. It is still in the hands of the DPW counsel in Philadelphia. We were told by our lawyer that an update would be coming this week – I hope a good update. This step needs to completed so that we can move her assets into the trust. And then we can apply for a waiver from OMR and also apply for SSI. Then, once funding is available, services can be gotten for her after her 21st birthday.

But there is no funding now from OMR through the end of this fiscal year and there is no funding available for the next fiscal year beginning in July (at this time). It all depends upon the state budget. And so, we have gotten in line for an autism waiver, but that is not guaranteed and is on a waiting list / random pick basis.

My wife has looked at Melmark as a place to provide services for our daughter. But that requires funding or payment of about $2000 per day. Another avenue for services is also being looked at Devereux. That requires funding, too. So, we are stuck, as you can see.

We are also in the process of getting legal guardianship but that takes times, too.

On top of this, I hurt my left knee and tore both meniscus in it requiring surgery on May 5th. I’ really not looking forward to any pain or need for therapy, but that’s part of the process and part of life as I get older.

And we also got a new OMR supports coordinator on April 1st and will meet him this week for the first time.

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.

There are many systemic problems with government, education, and the health systems. I am mostly concerned (at this point) with the mental and behavioral health system specifically in Pennsylvania.

I sent the following email last year to a bunch of people I knew of or had contacted in the state and / or mental health systems from working on a DPW Children’s Behavioral Task Force a couple of years ago. I felt I had nothing to loose and may even get some surprising results. However, I was wrong.

Sent: Tuesday, August 22, 2006 8:45 AM
Subject: state of the behavioral health system

> Since I had this all-inclusive email list, I thought I would use it to send a suggestion (and complaint) to all of the parties who would appear to be involved in making the children’s behavioral health system work better. If I am out of line, then I am sorry. But being a parent, I must be my daughter’s advocate and try and make things better. That’s why I participated in the task force.
>
> My suggestion is that the tracking and reporting system used to monitor the service providers and organizations like Magellan, need one minor update which should help our children get the services they need (providing they are available which is my other concern). So, let me give you a real example of what I am talking about. Magellan authorizes services for my daughter. They are supposed to monitor our current service provider and how well (or not) he is doing. They have authorized 12 hours a week TSS services but we haven’t received these services since February. I know that it’s the parents right to make a complaint to Magellan, but we chose to work with our provider (the better alternative). Unfortunately, a lot of time has passed. If Magellan or DPW had a way of seeing that these hours had been authorized but not been billed for, then a flag should have been raised to indicate a problem. A system mod will help.
>
> That’s the first part of the problem. The second part is basically that there are not enough qualified support people in the behavioral/mental health industry. So, even if a flag was raised and waved frantically, there wouldn’t be anyone to provide the services to our daughter.
>
> I just want to help make the system better and ensure that our children get the services they need.
>
> Thank you for listening.
> jim wurster

So, being in the same situation again this year, I sent out another email.

Hi everybody,

It’s been almost a year since I sent out the email below complaining about the state of our mental health system in Pennsylvania. I apologize again, but since I am a parent, I need to be my daughter’s advocate.

We are now in the same situation as we were last year. It’s been 4 months since my daughter has had TSS services. This is ridiculous. Apparently this is a pervasive problem in Delaware County. I just spoke with our BSC and their company and from her perspective, all providers in Delaware County are looking to hire BSCs and TSSs. This is not the case in Chester County. All of their clients are being serviced there.

Why is that?

I was also told (and this is not our case) that in the last month or so, she has gotten 12 denials of services for her clients when she never had this happen before.

Why is that?

Where does the funding go if it is not used?

Why can’t this money go with the client to be used to best service the client, especially if there is no staff to provide the services?

Is there a problem with Magellan?

I would really appreciate someone following up on this. My home number is 610-328-3824.

Thank you,
jim wurster

I sent this last Thursday and did get a call from someone in Child Welfare who had my email forwarded to him. After explaining the letter, he assured me that he was going to contact the appropriate people in the state. He said he would follow-up with me this week.

Today I got a call from the case manager at Magellan giving me an update. The provider is doing his best to find someone and so are they. His suggestion was to contact OMR to see if there was some waiver funds available for support. It sounded like there was no short-term solution to the lack of wraparound support in Delaware County. So, he called our case manager at OMR and left a message.

Could we hire someone to provide the services? No, they have to be hired by one of the providers and meet the DPW requirements.

Is there any way of using the state funds in some other way by us? No.

But he did say if we knew anybody who wanted a job, to contact our service provider or Magellan.

At this point I just want to scream. This is just so stupid.