Don't know what to do

Discussion in 'General Parenting' started by dcmckay, May 15, 2009.

  1. dcmckay

    dcmckay New Member

    I have a 14 year old daughter who we are trying desperately to get some help for before she winds up dead. She has schizoaffective disorder, seizures, frontal and temporal lobe insufficiency, mild autism and mild mental retardation. She has been in the local psychiatric hospital 13 or 14 times, as well as 2 hospitals in Oklahoma and 2 different residential treatment centers in Texas. Short-term hospitalizations do not really benefit her and she continues to deteriorate. She can become very violent when upset, as well as self-abusive and suicidal. She has been seen by every physician in our area and we now drive 4 1/2 hours monthly for her to see a doctor in Oklahoma. Her physician has recommended a long-term state hospital placement, in order to hopefully get her medications regulated. Because he is in OK, he cannot admit to a Texas state facility. We tried for several weeks to get the local MHMR to make a referral to the State hospital. They refuse, stating that she needs to be placed in a group home for the mentally retarded. We visited the closest home that would take her and we were horrified! It is a nursing home with no other residents under age 25. They are all severely impaired. Most can't walk or talk. On top of that, it is not a locked facility and they do not have the intensive psychiatric care that my daughter needs. It would NOT be an appropriate place for her. The local MHMR continues to refuse to refer to the State hospital and aside from a court order, that is the only way to get her there. In the last 2 weeks, she has ran down a interstate, with cars swerving and honking. She has tried to wreck our car by grabbing the steering wheel while I was driving. She has tied a scarf tightly around her neck until she became blue and almost passed out. She has ran off several times and we have had to call the police. She has refused to go to school several times and it has taken 3 adults to get her out of the car. She has torn the doors off our built-in double oven in the kitchen (completely off the hinges!) Her physician told us to have her involuntarily admitted to the local hospital, so she would have to go before a judge for a "show cause" hearing, which we did. The hearing was held yesterday. We were not allowed in the room or allowed to speak to the judge. We provided 2 letters from her physician in OK stating that she needed to go to the state hospital, yet they still refused to listen and instead, discharged her to home! The case manager at the hospital stated that the reason they did not send her to the state hospital is that she has proven neurological damage and they don't feel like the state hospital is an appropriate place for her. Ok, I get that, but what are we supposed to do with her? If the state facilities are not appropriate, can they not pay for her to go somewhere that is?? If she needs a neuropsychologist unit, and there is not a state facility with one, then why can't they assist us in getting her to one?? We have her on private insurance AND Texas Medicaid, yet no one wants to help us! Is it going to take her killing herself or someone else for people to listen?? She is very dangerous. Yes, it is neurological, but people with brain tumors kill people! Doesn't mean they are any less dangerous if it is neurological! What is it going to take. We are desperate, scared and frustrated and don't know where to turn!
  2. DaisyFace

    DaisyFace Love me...Love me not

    O that sounds terrible! My heart goes out to you....

    I wish I had some answers for you, my this is outside of my experience. So instead I will send ((((hugs)))) and support and keep your family in my prayers.

  3. smallworld

    smallworld Moderator

    Have you asked for help from:
    You state representative
    Your local chapter of NAMI
    Your local chapter of the National Federation of Families for Children's Mental Health
    Your Medicaid caseworker
  4. susiestar

    susiestar Roll With It

    I am so sorry that it is such an uphill battle on a slippery slope to get the appropriate treatment for your daughter. It just seems worse than criminal to have to fight this hard to get appropriate help.

    Is there any possible way you could get a home in OK and then get her admitted via her doctor here in OK? (I am in OK, and have found it much more helpful than what friends have gone through in TX. Even with the children's medicaid!)

    Maybe if you or husband got a cheap apartment near the doctor you could then get her admitted? I do have to say I am not at ALL surprised that you got no help from the courts in TX. When my husband was job hunting after grad school we refused to move to TX because we knew our oldest would need a lot of services and it seems far more difficult to get them in TX than in OK.

    Chances are there are programs that are very VERY well hidden that might help. We found a huge list of placements through the resource officer at the local middle school. Even our well connected therapist hadn't heard of MOST of them. You might ask the school resource officer if he knows of any programs or placements for kids with behavior problems. You also might look into the Lions' Club. They seem to have some well funded options in some states.

    You also may want to look into hiring an educational placement specialist to help you find the RIGHT placement for your child. It can make a huge difference.

    In the meantime, I strongly suggest key locks on every door (though you cannot lock her in her bedroom you CAN lock her OUT of other areas of the home), always having 2 adults in the car to transport her or calling an ambulance if she has to go somewhere, and every other safety measure you can think of. A domestic violence shelter may provide advice and help (it is still DV if your child is the violent one) as well as free counselling for all of you.

    If there are any younger siblings they MUST be protected from her at all costs.

    I also know that the National Institute of Health (NIH) has some trials and resources you might qualify for. it is a shot in the dark but it can't hurt to check it out on their website and with a phone call or 7.

    Sending gentle hugs to you!

    ps. My health permitting I might be able to meet you for lunch depending on where your appts are. I have health issues, but would be willing to drive if I am up to it.
  5. dcmckay

    dcmckay New Member

    Thank you, daisey, susiestar and smallworld. Yes, we have appealed to NAMI, several government officials, Medicade caseworker, MHMR, school, etc. Texas Medicaid doesn't cover Residential Treatment Center (RTC), like some states do. Also, because of her MR/autism, most mental health programs/facilities won't take her. Places for MR/autism won't take her because of her history of suicide attempts and psychotic behavior. It's like she is just falling through the cracks of everything. difficult child appts and psychiatrist are in Oklahoma City. My mother in law lives there and we have asked if she would be willing to take difficult child for a while to get her on OK Medicaid, as I here that they cover Residential Treatment Center (RTC) placement. She won't do it. I don't think we could afford an apt there, but I will check on it. Thanks for all the advice.