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My daughter continues to be the pawn in mental healthcare war in the State of Arizona.  How those in charge fail to see that a for-profit company is going to anything and everything to make a profit, even at the expense of those they purport to serve is beyond me.

The Clinical Director has agreed since September that for "custodial reasons" she would support removing my daughter from the current placement - but, earlier she could not for "clinical reasons".  Gotcha, be a yes woman to Magellan to ensure you get your bonus, but pat me on the head and "support me" as I file complaint after complaint because my daughter is provably being medically neglected and emotionally abused by the provider I have complained about for 11 months and you have refused to change the placement every month.  My daughter's psych eval has been expired since May.  The psych has not checked labs ever.  The psych took her vitals in April 2009 but continues to use the exact same vitals for each med check report.  The Clinical Director has provably violated HIPPA - the emails don't lie.

The provider has taught my daughter how to commit retail fraud.  She has allowed my daughter and the 12 year old roomie to take provacative pictures and cannot assure us they are not on the internet.  She has taught my daughter to lie and withhold information from me, her therapist and the POA.  Most recently when she was asked to remind my daughter to bring her theraputic journals (part of the treatment plan)  to her therapist (I was not in the State so I would not have seen them), the provider balked at the case manager but said she would tell her.  My daughter arrived telling an amazing tale of having burned her journals in their bonfire the friday before.  Hmmmm, provider did not remember that yesterday when talking to the case mananger????  Therapist called and "confirmed" the bonfire story with provider who indicated she "processed" with Tierney  the burning of the journals.  Hello?!?  Service plan indicates supposed to review with other therapist every week - which Tierney tells us has NEVER happened and she has not written in a journal in three months.  Hmmm - had several incidents that per treatment plan should have been journaled and discussed with other therapist and now not only have you not done that but you allowed her to burn the journals.  I do not believe she burned them, but it certainly makes me wonder what she wrote that was so damning that she had to hide it from a therapist.

The provider unilaterally discontinued my daughter's thyroid medication last December and refuses to transport her to her endocrinologist for treatment/follow up. Magellan does not care.  A complaint has been made to child protective services - let's see if they care.  If I did it, I would be in jail.

The provider refuses to transport at all.  So the State is paying Comtrans to drive Tierney all over under authorization codes indicating "medical necessity" - I hope the tax payers think taking my daughter to have fun at the mall is medically necessary and want to pay a couple hundred dollars per trip for transportation while also paying this provider to sit on her butt while her contract says she will transport Tierney.  What a perfect scam.

My daughter is being discharged from this level of care based on select criteria from her treatment plan.  She never did meet the90 days without aggression clearly stated on several pages, so Magellan chooses to ignore that criteria.  The behavioral school indicates that every single day there is verbal aggression at a minimum.  Magellan says she is "safe" in the community because she has less than two aggressive incidents per week - hmmm, again is she supposed to waive her service plan at police when she assaults someone for the first time in a week and say they cannot arrest her.

It is a travesty that the State of Arizona will allow Magellan to dump profoundly mentally ill children out of service after being abused by a placement for over a year knowing her behavior will immediately result in her ending up in the juvenile justice system which anyone with a brain knows will only cause her more harm.  But don't worry, Magellan will make their profit and the Clinical Manager will get her bonus.
 
I saw today's show about the family with the 18 year old ADULT child diagnosed with bipolar disorder.  I sent a post to their message board.  It is heartbreaking, the total lack of support and resources for the mentally ill and the families that love them.  I get that no one promised us perfect spouses, parents, siblings, etc. but the toll mental illness takes on the entire family unit needs to be addressed every bit as much as the medications needed to help them.  These issues also come with gifts, I truly believe that  Look at the number of extremely talented famous people suffering from bipolar or something similar.  While it certainly disregulates some part of the brain, it must positively activate others.  We have a very long, intensive family session next weekend - the therapist will be staying with us not only for our protection but to gather clinical data.   As an aside, I just heard about a book called Shut Up About Your Perfect Kid, supposedly written by sisters each with a special needs child, one has aspergers and the other bipolar.  I intend to check it out.  Goodness knows, we should all be writing a book.  I am regularly told our life is the makings of a Hallmark Special.  I would seriously love nothing more than to spearhead yet another investigation into the medicare fraud in the state system for mental health care.  These are for profit agencies denying children what they need to succeed in life and allowing their providers to not honor their contracts and still pay them incredible salaries while our kids suffer.  HUGS! 
 
My youngest has cerebral palsy, autism and hydrocephaly.  He is outgrowing his push chair (like a large stroller) I am trying to avoid the appearance of a wheelchair as long as possible, if not forever.  He keeps getting stronger with more endurance.  However, he really needs a new push chair.  I have tried ebay and amazon but no used larger chairs.  New runs about 1,300.00 and that is NOT going to happen.  Someone suggested Shriners, but the only links I can find for them are for kids needing hospital services and thank God, he does not.  I have the ability to travel as a job perk so I can go anywhere you may suggest.  I know I am preaching to the choir, but somedays it is hard enough just having kids with issues, it seems like insult to injury that meeting their needs costs triple what a typical child would need. 

I need to become the next JK Rowling or whoever is popular now.

Thanks for your suggestions.

Kristi
 
I love Parent Warrior's spirit.  Right now I am truly lacking spunk, totally not like me.  I have spent so much time focusing on Tierney since just before the taping (early May), the situation is really eating at me.  Add another newbie and I am just ready to throw my hands up with continuing the course we are on.  For them it is a job, for me it is my daughter's and family's entire future.

I am desperate to bring her home and try things my way.  I know that cannot work without a comprehensive package ready and waiting, but I am feeling like we are wasting so much time with so little time left.  The cognitive therapies are not working.  I feel like attacking this the way we did Spencer's autism - a lot more hands on.  I am curious as to the effect of music therapy and possibly sensory deprivation both of which were miraculous with Spence.  Every minute of every day was therapy for him.
Anyone try that or something else not on the usual treatment plan?

I had another post go missing, so I am going to end this now and post another right away. Different subject but need everyone's expertise on that, too.

HUGS -

Kristi
 
"Sometimes you just have to laugh at the whole darn thing."
 
"Sometimes you just have to laugh at the whole darn thing."
 
New goal
 
"History is the best predictor of the future - paraphrasing Dr. Phil. Historically no real help for Tierney. So far, no new help for Tierney."
 
I have to believe something can be done.  We can raise awareness, support each other and, hopefully, find a path to true diagnoses and meaningful treatment for these amazing kids.  We must stop the isolation of parents/families who have given all they have and then some.  No one would blame you if chemotherapy did not work for your child, we must not feel guilty or ashamed when the treatments for our children do not succeed either.

For those of you in the been there, done that category - please share.  Give the good, the bad and the ugly.

I would also like people to provide info for the battles they have won to get insurance to cover various treatments, etc. 

This can be a place of new hope

Kristi
 
There are so many other things to consider when you are the parent of a child who is so profoundly mentally ill.

Starting with the obvious, I have to protect Tierney AND my other children.  I am aware that my daughter has been both the victim and perpetrator of sexual violence.  I am aware that my daughter has a tendency to assault, striking at random.  Further, I am aware that my daughter tells grandiose lies and has a liking for taking things that catch her eye.  (Yes, in the real world that will be classified as stealing.)

Then there comes the less obvious problems, most notably the attention-getting behaviors.  When my daughter was younger, she took a medication called Depakote in an effort to stabilize her moods.  One of the side effects of the medication was nose bleeds.  No problem, we could easily wash her, her clothing and her bedding. She quickly figured out that a bleeding kid got a lot of adult attention.  Enter a play therapist who literally had graduated less than a year before.  She meets my daughter at school, notices dried blood in her nostrils, does her own questioning of my daughter, called my daughter's therapist who advised against calling CPS, but then does so anyway.  Yes, I am annoyed to have to put up with CPS coming to my door, but, of course the investigation was closed on the spot.  And, my daughter learned a new trick she has used many times to feed her need for attention and to get back at us when she is unhappy with a parenting choice.

I learned to really despise the words "mandatory reporter," until it was pointed out to me that I am a mandatory reporter as well.  It got to the point that I met with teachers and advised them that if they could not demonstrate common sense, I would not either, as my daughter came home and told terrible tales of being abused at school when it was clear she had common playground type injuries.  It got to the point we had to install surveillance cameras in her room to document the self-mutilating behaviors.  Eventually, her beautiful room became merely a mattress on the floor and a small plastic set of drawers that could not support her weight. 

My daughter at one point had been in out of home treatment for a very long time, when she was upset with us for not delivering new clothing quickly enough to suit her (these facilities were hours away by car and some did not let us bring her siblings, therapists were not available on weekends, etc. so timing was difficult), she clearly took a story relayed by a child in group therapy the week before who was in treatment for having been pimped out by her parents, changed the names and told it to her therapist (who was also the group therapist) as if it had happened to her.  The therapist citing her mandatory reporter status called CPS.  The game begins again.

Clearly, I cannot be expected to build a relationship with and trust a therapist that my 7-year-old can manipulate.  Especially given that this therapist had the advantage of years of records documenting my daughter's pathological lies, manipulative behaviors, playing staff and peers against each other, etc.  Later during her placement, she told another borrowed story of having been handcuffed to her bed for a month while living at home.  Due to my daughter's special education needs, a simple review of her educational records (which the placement had as their school was on-site) would have clearly demonstrated she had never missed a month (or even a couple of weeks) of school even during the summer as she was on a year-round school program.  Seriously, school was how I got a break from her behaviors, she did not miss any more school than was absolutely necessary.  If, the therapist had taken the time to call her in-home therapist of many years, she could have easily described Tierney's room as having a mattress on the floor and nothing to which the handcuffs could be attached.  Once again, proving Tierney is a very bright child who can manipulate most professionals and cause significant disruption within the teams that are supposed to be treating her in an effort to be able to have her return home.  Along the way, there have been a few notable exceptions who saw through my daughter's lies and manipulations, but sadly those seem to be few and far between.

Suffice it to say, despite our clean record, Child Protective Services knows our names. Tierney has committed unspeakable offenses against her siblings.   Please understand that due to her brother's hydrocephaly and earlier brain injuries resulting for prematurity, if she were to knock him unconscious, as she has a therapeutic foster mom, there is a significant probability she would kill or permanently injury him.  Additionally, he has mild cerebral palsy and is less than half her size, he could not possibly defend himself.

CPS has fired their warning shot across the bow.  They have advised that IF Tierney hurts the other children in the home, they will remove the other children from the home.  You read that correctly.  They will take the other kids, not Tierney.  The charge would be failure to protect the other children from a known threat.  I find that to be a bit ironic.  I am one person and I will be prosecuted if I cannot protect my other children.  Yet, in her placements, she has committed multiple sexual offenses, assaulted teachers, trained staff and peers. They have chosen to call the police on my daughter when they could not handle her behaviors.  There is no consequence to the facilities for failing to protect their teachers, staff and the other peers, but I risk losing custody of my other children.  These round-the-clock facilities with teams of staff that come in shifts have proven they cannot keep everyone safe.  Despite multiple requests, CPS refuses to send a representative to our Child and Family Team meetings to discuss what can be done to protect everyone and return Tierney to the home. I think this may be the ultimate rock and hard place.
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