[Perfect7]

Our son was denied by medicaid for residential treatment. The core provider said it was because he had a previous diagnosis of autism, and that's how they submitted it to medicaid. I asked them didn't they tell us they believed he had RAD, PTSD, and childhood onset schizophrenia? They said yes, but their facility (even with the psychiatrists there who saw our son) weren't able to do psychological diagnosis. They were only allowed to recommend treatment (RTF).
So I called the residential facility that agreed to accept him. They said yes, the felt he had RAD, PTSD and childhood onset schizophrenia but they couldn't give him that diagnosis until the day he was admitted. I told them he couldn't be admitted without it.
So....I called the core provider back and asked what we were supposed to do? She said medicate him further and "maintain". Are they for real? She said she would recommend going to their another psychologist for another evaluataion to get the diagnosis and then we could possibly reapply again. So I called the psychologist. No appointments until january.
Told the core provider this. She said she was sorry, but the State just wouldn't cover autism so until that diagnosis was gone, we were out of luck. I told her he was the State's child until 3 months ago.
Well, we found a psychiatrist 3.5 hours away who is willing to see us tomorrow so I'll be treking across the State and then MAYBE we can apply again.
They are submitting an appeal to Medicaid for being denied, but she said it will also be denied.
This is insanity at it's finest.

[crick]

I'm thinking you need self medication this evening....oh boy!

This is all so frustrating! I hope the diagnosis correction gets done and you can get the services needed for your son!!

[mommytoEli]

it is frustrating that the system says they want these children to have homes, but once they are out of the system it is so much harder to get the care they need. sometimes i think to myself dd would have gotten SO much more help if she had remained my foster daughter and i had not adopted her. i think that is a sad state of affairs when families have to think before they adopt if they want permenancy for the child OR help for the child. it is frustrating because whether they are adopted or not, it is the SAME child with the SAME problems who need the SAME care.

i am sorry. i hope you get a miracle next week. there is nothing worse than living with a child that clearly needs help, that as a parent, you can't get them. btdt.

[Perfect7]

Thank you guys. I just needed to vent and this is the only place where I know other btdt parents. He began with all of the issues about a month before we finalized and we were told to "hang in there" because he'd have more available services after we finalized. I feel like a fool and it is extremely frustrating. I think I'll write a book one day about this....

[mommytoEli]

MORE available services. i can't believe they said that. shame on them. did you call them and ask where these "more available services" are now?

[Linny]

...there is nothing worse than living with a child that clearly needs help, that as a parent, you can't get them. btdt.

Absolutely! I know the feelings as well. I hope things turn around for you.....if you have to wait too long or continue to be unsuccessful, have you considered talking to a state senator or someone simliar?

Sincerely,

Linny

[Linny]

Well....here's what our caseworker told US when we said to her (post-adoption)....'There's something VERY wrong here.......we think he needs to be hospitalized or in residential?' (The child had tried to harm other children many times...and that's the sanitized version, folks.)

This caseworker said to me: "(Linny)....you know you're the matriarch of this family and *I* KNOW you could never sleep with yourself knowing you'd placed that child (somewhere else)!!!!!'

Now I ask you: WHAT kind of response is THAT? Found out later the agency/CPS had NOT disclosed all of the problems he had from toddlerhood...after we discovered the documents----post adoption, of course.

What happened to trying to HELP these kids, rather than hurt ALL of us? (That's a vent, sorry...)

Sincerely,

Linny

[athikers]

What is their justification for not treating him if he has an autism diagnosis. Autism is considered Axis 1 now, as in TREATABLE! I could see not admitting him when it was considered Axis 2, but that was 15 YEARS ago.

As for stupidity of professionals... I cannot access my son's health records from before his adoption, his sending state will not give me copies?!?! Why? because I was not his guardian at that time (you don't say). How nice for continuity of care of his brain injury... we will have no MRIs or CTs from his whole first two years?!?!?!?! Which is what they use to help discern if he is stable.

Lovely.

[Perfect7]

What a long day. We just got back from the doctor (neuropsychiatrist) who reviewed everything...including our son's MRI and CT of the head and two EEG's, plus all psychologicals, our report, and report from the school and therapist, and the other psychiatrists. In a nutshell: schizophrenia, not autism. He said they should have picked up on the fact that he was normal until 3 and then had a rapid decline in executive function, motivation, and speech, and the hallucinations were the kicker. The average age of onset of psychosis with childhood schizophrenia is 10.3 years old (our son was 10.5 months when psychosis started this summer).
No psychiatrist has ever dx him with autism, it was always psychologists who had seen him once and used the little checklist to say "autistic traits".
I think I'm the only woman in history who has said "Thank God!" that my son has schizophrenia just because he can now access much-needed services, even though it scares me all the same. The core provider is going to reapply for RTF.
Linny, can't believe your cw tried to place guilt on you for trying to help a child with issues you didn't cause. I probably would have told her to take him to her house for a week and let me know if she felt the same way! LOL.
Athikers, can you circumvent the "State" and send a notarized release of records to the hospital where the MRI was done by sending a certified copy of your adoption decree? I get client's medical records in FL all the time just by having them sign a notarized release. I don't know how legally they can keep from giving it to you unless it also contains the bio mom's info somewhere. Even then, they could didact that portion.

[Perfect7]

PS, the MRI also showed our son had a small portion of brain damage to the right frontal lobe in the white matter. The doc said the most likely cause was an "ischemic event" caused by oxygen being cut off from the brain. Maybe that explains why he sometimes tries to choke us?????

[Nevada Jen]

Actually, that probably is why he is trying to choke you. Frontal lobe damage often causes uncontrollable violence and agression. My DD had a stroke that blew out both sides of her frontal lobe and we were very worried that this woudl happen. Luckily with her it did not but it certainly destroyed her intelligence.

Read up on frontal lobe damage to get an idea of what you might be dealing with.

[Perfect7]

Thank you, Nevada Jen. I will do that! It's a 3 mm area, so not really so big but it could be triggering a lot of what we're seeing. We saw the psychologist today who did his eval in Feb and she said he was having obvious psychosis...he was talking to his shadow and fighting with it, looking like he wanted to hurt someone. She asked if we could give him Risperdal NOW. She said he was an emergency case and would get everything together ASAP for the medicaid appeal. Day by day!

[athikers]

Originally Posted by Nevada Jen

Actually, that probably is why he is trying to choke you. Frontal lobe damage often causes uncontrollable violence and agression. My DD had a stroke that blew out both sides of her frontal lobe and we were very worried that this woudl happen. Luckily with her it did not but it certainly destroyed her intelligence.

Read up on frontal lobe damage to get an idea of what you might be dealing with.

I know after nearly a year of dealing with the realities of my son's brain injury, these things should not get to me... but, alas, when I think about all that we are likely facing with my son's brain injury I get sad and angry and and and... but, in spite of it all I still have hope that my little sweetheart will stay a little sweetheart... with a very loud, shrill, glass-shattering "angry" yell