Category Archives: Behavior

Another busy week

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.

Awake and thinking

Here I am awake when I should be sleeping. Ever since the start of daylight savings time, my dog’s sleeping schedule has been altered and so has mine. Now, I am thinking, thinking of a lot of things. I think of work and how things are not going smoothly on a current project. I think of CategoryGroups add-on for which I see how to get it to work and then get it out to my testers. And I think of Alicia and how things have not gone smoothly over the last 2 days at camp. She has refused or said no to requests by camp personnel. Yesterday I had to go over and help out although she is not always cooperative with use her parents. There is no magic keyword or prompt to get her back on track. I worry and so does Maria. She even called the therapist to find out what to do. Hopefully, she’ll share that with me today.

Today, I’ll go to biofeedback with my laptop to see if it is set up correctly. I’ll find out what I should do next to help me learn the process.

Don’t let anyone tell you you’re not strong enough!

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

Bureau if Autism Service of the Department of Public Welfare (in Pennsylvania)


Depress or press the key or button. But sometimes you feel like you are the button that is being pressed. The letter I sent to Magellan complaining about our daughter’s situation was sent back to us saying that we couldn’t send a complaint letter on her behalf because she was 19 and an adult. So, we need to get a form filled out to do this. We are now reminded that we need to get guardianship for our daughter very soon, if not yesterday.

We had a meeting the other day for approving the re-evaluation that was done by our behavioral health service provider. The meeting was actually a turnover to a new service provider who has staff to provide the needed services. The meeting lasted about 2 and a half hours. A rep from Magellan was there and so it turned into a more complicated meeting (CASSP and ITM). That was fine with us as we really needed to go over the history again. The new service provider had representatives there, as well. And we had our psychotherapist there representing our daughter. Alicia was there when she got home from school.

All in all, it went well. The paperwork was signed, sealed and delivered. The new TSS is supposed to start next week. Yeah!

Then, yesterday, we participated in a study about parents and their older children or adults who are disabled. It had to do with what we planned for the future and how we dealt with that. This was a good experience and made me, at least, bring things into focus. I learned that I am very angry with the system and with us. I am concerned that there are no services for our daughter when she turns 21, even though the representative from Magellan kept on telling us that she had heard there were more services available. That concerns me that the MCO doesn’t have people who are in touch with what is going on. That decreases the confidence that I had with Magellan.

So, we have things to do (and should have had done months ago). We will be meeting with an educational consultant today to go over ensuring that the last 2 years at Elwyn are productive and meet Alicia’s needs.

Clocks and Responsibility

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.