Friday, October 24, 2008

Red Tape: Always Starting Over

I am so sick and tried of red-tape. Actually, I expect there to be a certain amount of paper work and a few hoops to jump now and than. I also respect the fact that in some cases people are required to go through a lot of red-tape to accomplish some things. I didn't have one tiny bit of trouble going through the Adoption Home Study red tape. And I think anything that is funded with tax dollars needs to have a little bit of paperwork and some questions answered.

The problem seems to be however, that every time our family needs to access services we have to start our "case" or "file" from day one--and appear to be the only ones responsible for record keeping. HIPPA hasn't made anything easy for dealing with an ongoing "Life Long" disability. I have signed release after release of information for Makala's doctor--Not one time has he been asked to actually provide any information.

When she was placed in Residential Treatment the doctor who has treated her and provided therapy at least once a month for years wasn't even contacted. No one called him to ask about her medication plan--no one sent for records and there was no communication during the whole 3-months she was placed in residential treatment.

I had made it clear on her admissions that the "medication" management was one her doctor and I worked closely to monitor and we OFTEN made changes. Her doctor had advised me that it may be a long road of "trial and error" before we figured out what medications and combinations would help Makala most... Not only was it important to find the medications that worked, but to also find the delivery methods and times.

When we left her at that Residential Treatment facility the importance of her medications and the fact that we had not found the correct medication combination, delivery method and timing--was CLEAR. So to, was the fact that as her caregiver I was responsible to educate myself about the side-effects and look for anything that might cause concern. It was clear that meds were really not effective yet in helping Makala... and that I had been in nearly daily contact with her doctor for years...

The residential treatment center just wrote down her "current" medication plan... Ordered medication to fill this plan and for three months stuck with the medication plan I had made clear was still on "trial and error." Her doctor was never contacted and he never received my signed releases for his records. He was just left completely out of the loop for three months and the treatment center left me to be the one to catch him up to date three months later when she was released.

I guess, I wouldn't have minded as much had anyone actually taken responsibility for the simple fact her medications had not been firmly established. I suppose I was ignorant to assume that the initial meeting with the treatment center Psychiatrist meant he would assume the role of the psychiatrist I had provided when I was her primary caregiver.

Instead, during the three-month stay at residential treatment she was given the medication combination, amount, delivery method and times she was on when she was admitted. The staff simply robotic-ally stuck to her admission medications and even with the fact I made it clear we had not found the right medications No one seemed to care. No one took notes about what kinds of medication side effects they may have been seeing. No one even considered if her meds were working or if there might be different things that needed to be tried. She was just treated for three months with the Trial and error plan she had when she got there.

I might not really care if it hadn't lead to actually damaging her more!

No one noticed that in the course of 90 days she gained 20 pounds! You see, when I checked her in I made it clear that her medications might cause metabolism issues and we needed to be very careful about sugar and carbs. It was important at home that we be careful--her doctor had given me several recipes to try... I also knew to look for certain physical signs and what to do if I saw these signs. I understood what to look for in case she was having Low Blood Pressure and I knew that I needed to let her have "Chips and Soda" if it appeared she needed it. As her caregiver it was my job to balance the sugar thing with the low blood pressure issue and make a judgement call.

She gained 20 pounds because at the center if someone didn't Like Dinner they could have a Peanut Butter and Jelly Sandwich instead. Sugar and Carbs. And even though I also made it clear at admission she had eating issues from the fact that she had gone without food for long periods of time from birth to the age of 4 years old. She had hoarding issues which we had seen great progress in helping her overcome. No one at residential treatment seemed to notice she has a trick.

When the plate with dinner is set she will take a bite and let it be known she doesn't like it. Because it isn't okay to not feed a child the fact she doesn't like what she was given means the caregiver must find something. When she is offered something else she will eat for dinner by the time it is prepared and given to her she will have eaten the original food served. If the caregiver notices that she has eaten what she said she didn't like she will say she got hungry waiting for the replacement food and still wants it.

The food was made--she wants it and because her early life taught her to eat as much as she could when there was "the chance" to eat she learned to eat as much as possible whenever there was food to eat. I am sure my little girl doesn't even know why she needs to eat as much as possible or where these tricks she has came from. I consider knowing this about her part of my job to understand and to help her understand as well.

When it comes to her medication issues while at residential treatment for 3-months the weight gain was actually the least of my concerns. Especially when we finally got her out of there... and noticed one of the MOST ALARMING Known side effects of one of her medication. Abilify. Apparently, during over 90-days in the care of the "professionals" no one paid attention to the fact that she was drooling all over herself--and had developed a tick! A clear twitch of her head to her shoulder with drool poring out of her mouth! No one noticed? No one looked at her admission paperwork to see that the medication was new--had side effects and that she was so clearly twitching and drooling it couldn't be missed!

No one saw that she was showing side effects of a new medication--and no one researched the fact that these side effects were so important to notice because if the medication continued these effect could become Permanent. Forever twitching.

...the services are fine but the truth is someone needs to ACTUALLY care... Instead I only see the fact that no one cares enough to realize that in our Home her File is Always OPEN and we don't get to start all over every time a new service is needed. For HER everyday is an open day and every day is a chance that someone might care enough to help US--OUR FAMILY--help her live her life with the forever damage to her brain and HEART from loss and trauma.

Here we stand again in limbo and next week I have a meeting to OPEN her request for volentary services with our DHS office. I opened the request when we brought her out of residential treatment a year and a half ago... Not sure when or why the request was closed and no one ever called or wrote to me and told me the case was being closed.

The new case manager would like me to bring the information about her history... I will bring all the Boxes of papers and He will not look at any of them. Instead he will ask questions and write down what I say at that moment. If I forget one or two things in the past nearly 6 years it will FALL off her record. If I emphisise one issue more then another--It will be the ONLY need written down... I have to emphasis each and every issue equally next week and make sure the Complex detials about Her, her life and everything that has ever happened is included... Otherwise the NEW Case will be incomplete and when I attempt to get it added later I will be told that I didn't mention that at Intake.... It must not be a real issue.... otherwise I would have mentioned it...

...idiots---ITS A CYCEL of Behaviors so--what is an issue now may be something else in an hour....

It is HARD to be where we are today. We love our little girl so much and we seem to be the only ones who keep her file open. If anyone really cared they would not insult our wisdom about her risks and needs. If anyone really cared they would understand as well as we do. We wouldn't even need to spell it out if we actually had the kind of "back-up" and so called "wrap around" services we were promised 6 years ago as we waited for the chance to go to committee....beliveing someone had cared about our little girl enough when they found her and saved her to actully notice her pain then...

We understand that our Story is one of the Rare stories. But, for those living the rare story it is real.


  1. Anonymous3:30 PM

    sad, because it is not all the rare at all...

    same crap here.


  2. At least there is a way for some of us to find each other. One glimpse out of isolation...

    When we have a moment to breath in faith our children will be okay for a week or two I think You and I should meet in Hawaii.

    Lets make it a date 2018 my husband has agreed to pay for it!


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