On a good day, parenting will test the integrity of your character. On a bad day, parenting will test your will to live. Parenting children with trauma histories will cause you to test the integrity of everything and everyone you thought you knew, for the rest of your life.
~J. Skrobisz

Monday, June 13, 2011

Loop Holes, DD & the Paradox of MH: Education Part Two

Yesterday I spelled it out. For Mental Health (MH) there isn't much we can do. Are there any loop holes?

Loop Holes:
My psychiatrist said a year ago that Sissy needed long term care. Her first IFI team supervisor was talking about finding a group home. Her CBAY supervisor was researching the laws on ungovernable minors. In other words, if the professionals managing your child's case have concluded and documented that the child is best served in an out-of-home placement, it's like a backdoor legal loop hole that prevents child abandonment charges for the parents.

If I call up my county's child protective service office and say, "i can't deal, come get her" it goes bad. VERY bad.

So why not pursue this loop hole?

Ah, yes. The million dollar question.

a. DBHDD in an uncouth manner informed me at the audit several weeks ago that "private psychiatrists like to say all the time that a patient needs long term care but that's not how mental health is run anymore." Translation: therapists trump medical professional opinion. In fact, in our state, part of some of the new MH initiatives (see yesterday's discussion) pdoc's are no longer credentialed to put a child in acute or long term care. Only a "core provider" recommendation, using a CAFAS score (see acronym dictionary) is acknowledged by APS review boards.

b. No therapist is going to risk their job by telling the state that their recommendation is that their client be put in a long term facility. The supervisors heads will roll and the state will strip that facility of the credentials to bill medicaid for services. Ultimately, threat of termination and being black-balled by medicaid will prevent therapy services like IFI teams from putting such a recommendation on paper. They might write, "the parents are unwilling to continue MH services and are requesting long term placement" but as you can clearly read, that statement is a reflection of the parents being unwilling to use services, not the child.

c. Ungovernable minor laws: ah yes. Proving to the state that your child will not be parented. First question: does your child have a history of criminal activity or truancy? If I say no (i'll come to that in a minute) then I have no case.

And why do I say no to that question? Because up to this point, I have provided such a structured environment for Sissy with staunchly supervised time and limited access to any opportunity that might bring her harm (including an alarm that goes off if she exits her room at night and do like other RAD kids do: raid my fridge or go online and chat with sexual predators) that she hasn't done anything criminal. Truant? Let me start with, I don't want to go to jail. In our state, six tardies without a doctor's note sends the truant officers to my door. Who's liable? Sissy? Oh no. Not Sissy. ME. What about running away? I always call her bluff. She never does it (give it time, she's only 11). Access to people that do drugs or drink? Pbft. No one is friends with Sissy. She's never invited over. Bottom line, for now, I've created an environment that prevents criminal and truant behaviors. Ungovernable therefore, doesn't apply.

Developmental Delay (DD):
Typically considered at IQs of 70 or below (that is the mental retardation level), it also includes ASDs and genetic disorders. Sissy's charts have jumped around for more than a year with PDD-NOS, which is considered an ASD. She has a few facial markings that suggest a genetic or developmental component. Her IQ composite is just under 100 (average) but there is a 16 point differential between her verbal and nonverbal scores putting her nonverbal just one derivation above MR. The explanation for this disparity? Her psychologist was unable to give a definitive answer.

Sissy has had EEG's, a CT scan and some neurocore work. Those tests have not shown brain damage. However, we've never done an MRI to rule out FASD, an enlarged limbic system or a truncated hypothalamus.

My plan is to continue with IFI and CBAY for now while doing the ground work with her psychologist and psychiatrist to rule out or prove a possible DD issue. Then I'll apply for the DD waiver.

Are there more resources for DD kids? Yes and No. Our state has bankrupted two of the waivers for DD kids but there is still one that Sissy might qualify for. Is hospitalization and/or long term care more available with a DD Dx? Sometimes.

What do I think? I think that after four years of only MH services with Sissy's behaviors getting worse, not better and menses hasn't even begun yet, we'd be fools to continue on this track blindly without being certain that she does not have a DD issue. I think she does. I've been saying so for years.

The Paradox of MH:
If a child has cancer, indigent or not, the child is provided with the appropriate medical care to help that child heal or at least make the child comfortable for the rest of his/her time. People, family, friends, communities, agencies, supports, hospice, churches, organizations, corporations, and more support these diseases and the families that go through such tough ordeals.

If a child has a mental health issue there are only chirping crickets. From everyone. Think about it? How many 5K runs have you heard about to raise dollars for bipolar research? What corporations have made charitable contributions to support mental health facilities? What organizations are out there educating the public at large about mental health? How many commercials have you seen that list hotline numbers to call if you or someone you love is suffering from a mental illness? How many lawyer commercials filing lawsuits against doctors or hospitals or agencies for neglect or malpractice have you seen? None.

Like leper colonies in the Bible, persons with mental illness and their families are exiled and left to die. Extreme words from a mother with an ill child that is frustrated with the system? Or truth? Both.

I've said it many, many times. Prayed for it even. If Sissy had DD issues, if she had a visible disease, if she required convalescent care, if she suffered from a rare genetic issue our story would be incredibly different. AB? I can parent him and ten others like him. Sissy? I've got no words ... and neither, as it seems, do the mental health professionals.


GB's Mom said...

I know! {{{Hugs}}}

Lisa said...

Absolutely true!!

I have kept my two very RAD, very mentally ill kids out of the juvenile justice system by structuring every waking moment of their lives. My son WILL steal at every opportunity - he just will. There has never been a consequence that's affected him. It is a compulsion and it isn't a matter of "sink or swim" for him - HE WILL DO IT given the opportunity every.stinkin'.time. Will he get caught as soon as he turns 18 and takes off? Absolutely - I just pray that he gets caught by the police and not by an angry store owner with a gun or a bat. His world has been very small up to now and he is still always getting caught. Now, isn't that really just nuts? This is not a competent person here and yet - no services available until he's living in jail. It is pathetic that I pray for jail for him after he's 18. Jail before 18 just penalizes our entire family because we'll be held liable for EVERYTHING and he won't care at all. He's run away, made accusations, refused to get out of the police car and come in the house when the police bring him home, etc. and they still force him back into our house. One day it just occurred to me that NO ONE wants to be responsible for this kid. Nobody who's spent 10 minutes with him wants to "save him", they just want to dump him back at my house and take off. It's only the people who are supposed to be providing services who try to convince me he's fine and I'm the one with the problem. Everyone else who spends any amount of time with him KNOWS very quickly - how sad is that? He doesn't try to run anymore because we always tell him he's free to go - we'll be calling the police before he's off the porch though - that's what good parents do, let the police know their children are out there and need to come home. He hates it and doesn't even bother to run anymore. He had such incredible power the first few times he did it tho, he knew we were terrified for him and he loved that.

Who would be the poster child for mental illness? Any takers?

Lucy said...

Just wondering... do you have an "Advocates" organization there? I'm not certain, but I think there is supposed to be a service for parents that provides trained advocates in the needs of children and families. Just a thought, I used them in the past and they were very supportive and helpful.

kisekileia said...

You might already be aware of this, but people on the autism spectrum are disproportionately likely to have a wide differential between verbal and nonverbal IQ scores in either direction. With Asperger's, if I recall correctly from Tony Attwood's Complete Guide to Asperger's Syndrome, verbal is significantly higher in about 50% of cases and nonverbal in 20%. (I haven't had a formal IQ test since age 5, but I'm pretty certain my verbal score is significantly above my nonverbal score.) So the IQ differential is an indicator in favour of Sissy having an ASD.

Also, would Sissy's abuse of Daisy or any physical attacks she's made on family members qualify as criminal?