What choices do I have? Seeking Advice.

[HopeFilledMama]

Please help.

My son is in a Residential Placement. He has layers of issues, and it was difficult to even find a place that would take him. He was admitted May 11th. He has been combative and uncooperative until 2 weeks ago. He is now (FINALLY) taking things seriously and beginning to inch forward with a little progress. He has deep sexual trauma issues (and is sexually reactive, addicted to porn, has tried to have sex on several occasions with out cat, and harms himself to enhance sexual feelings.) These things along with high functioning autism, and auto immune disorders makes caring for him more than difficult. Plus he has assaulted me several times. I love my son, but I do not want him home, not yet.

Heard on Friday (via email) that the insurance company is requesting a discharge date. They have given us 3 weeks. A month ago they did a psyco/sexual evaluation that says he is a danger to the community, targeting 0 - 5 year old males and 14 - 18 year old females. Feels forced sex is acceptable (rape) and he needs 24/7 monitoring.

What is the best way to keep him where he is at? He NEEDS to be safe. He NEEDS to continue intense therapy. He NEEDS to make changes in his thoughts and behaviors. All this is going to take time. My guess is 9 months to a year before he makes some permanent changes.

Any advice on how to deal with the insurance company?

 

[BusynMember]

How old is he? Do you have other kids?

I would refuse to bring him home. I adopted a kid who sexually acted out. I don't know if he ever got better. Nine months is unfortunately not going to happen if he has unusual sexual urges he acts upon or thinks that rape is ok. Even our kid knew that what he was doing was not ok. This is way serious and will not be fixed fast if it ever can be.

You need to be safe and so do others in the community.

 

[runawaybunny]

Hello @HopeFilledMama

You are in a very tough parenting situation but it seems like you are realistic and hoping for improvement in the future. "He NEEDS to be safe" is a very powerful statement, and in my opinion a healthy one.

I don't have any helpful advice but I did want you to know that I respect your opinion about your son. You are doing the best you can in an impossible situation. Hang in there.

 

[slsh]

Hi Mama. I think your best bet at this point would be to start raising the alarm with your school district (which is required to fund educational services for your son), with your state mental health agency, with DCFS, and if necessary with your Dept of Juvenile Justice (and this is the order I would take them on). This really doesn't seem to fall under an "insurance" issue anymore - you need long term funding.

You have a medical report that has, in essence, identified him as a predator (right now). Additionally, they are recommending supervision 24/7 - no family can do that, and I guarantee no school will keep him supervised to that degree while he's on their property either. How will the school provide education in your home community while ensuring the safety of other students? Huge liability I would think. If they cannot educate him in his community, they have to pay not only educational portion of Residential Treatment Center (RTC) but also the residential part.

State Dept of mental health - what funding options are available for sexually aggressive children? There should be options, even in this day of lousy state budgets. Ditto DCFS - ditto Department of Juvenile Justice.

Any conversation you have with anyone in authority, I would confirm that conversation in writing, via certified letter. "Dear Ms. Dept of Mental Health, this is to confirm our conversation on July 1, 2016. I advised you of my son's needs of X, Y, and Z, and the recommendations of evaluation by (whomever) citing safety issues and need for 24/7 supervision. You advised me that in spite of the potential danger my son currently presents to our community, no funding was available." Or whatever. Share the wealth, so to speak, and create a paper trail.

Additionally - and this may have changed in the last 15 years, but it's definitely worth checking - when my son left for Residential Treatment Center (RTC), he was considered "independent" in terms of social security, meaning SSA no longer considered our income (he was 9 at the time). He started receiving disability payments, and by extension was eligible for Medicaid - which may or may not fund RTCs. I live in IL and at the time, we had a grant program for severely mentally ill kiddos so Medicaid was a moot issue for us. My understanding is that the grant is next to impossible to get anymore, but.... your son is not the first child with severe issues, and there is funding out there, somewhere.

Check with Special Education advocacy groups in your area - you can just ask about funding resources for Residential Treatment Center (RTC) if you don't want to get into specifics with everyone you come in contact with. Check with local federally mandated agency that handles child and adult special needs advocacy issues (the one in IL is Equip for Equality - their website may have links to other states' agencies). Even though I usually cringe when I have to deal with any state agency, IL has a Guardianship and Advocacy Commission that was exceptionally helpful when I've had to deal with issues for either of my 2 kiddos with disabilities - I'm thinking there's a similar dept in your state.

Basically you're going to have to get creative, determined, and even alarmist and a bit hysterical if it's called for - the goal is to find funding so that your son is able to continue treatment in an environment that is safe for him *and* for those living with him, and so that he is able to return to a less restrictive environment, *safely*, in the future.

Good luck, and don't give up. It can be incredibly frustrating, but.... someone, somewhere has the answer you need.

Edited to Add: Of course, the very FIRST people to talk to would be the folks at his current Residential Treatment Center (RTC). They may have a feel for what funding is out there. They may have more up-to-date information re: social security disability for him and/or Medicaid. They should know this stuff - but should and do are sometimes very far apart. Good luck.

 

[RN0441]

This is totally out of my league but (if you are financially able) what about hiring an attorney to help you sort this out?

The only reason I even mention this is that neighbors of mine did this for their daughter who was having varying issues. Don't know any details but if it were me I'd want an expert of sorts to help me muddle through to make sure I wasn't missing any opportunity.

Hugs and prayers to you on this very difficult journey.

 

[Copabanana]

your school district (which is required to fund educational services for your son), with your state mental health agency, with DCFS, and if necessary with your Dept of Juvenile Justice

This really doesn't seem to fall under an "insurance" issue anymore - you need long term funding.

I agree with every word Sish writes. Every.single.word. She has written a battle plan for you and your son.

I will go one step further, should you need to go there. There are many many parents who to ensure their children get the treatment they need, either for mental or other health issues, surrender custody to the state. In this way the child, if all other measures do not work, is eligible to receive the medical care they require paid for by the state. Sometimes this is the step that loving and devoted parents decide they must take to ensure their child receives what they need.

I would never, every accept responsibility to receive my child back into my home into my community with these kinds of unmet needs and the risks that this entails, to him and to others. If something were to happen, he would likely be tried as an adult and go to state prison, and you could be held liable too, as knowingly permitting his return.

You will be pressured to sign discharge papers by the facility. Do not. Tell them you require their help to identify and implement a responsible discharge plan if and when he is treated sufficiently to not be a danger to himself or to others. Which by their own statements, he is not.. Make them responsible, and the agencies SISH cites.The facility has social workers and attorneys to protect them. You have to protect your family, child and yourself.

 

[BusynMember]

Top notch post, Copa. Been there and bringing this kid home is a nightmare and lawsuit waiting to happen.

As you know, we did not bring our child back home for the sake of my two youngest, my pets, and the damage he could do in our neighborhood. I hope he got better, but he did act out in treatment...

It is sad but true that sometimes children are too sick and dangerous to live in the community. And if they are underage, the parents canbe made responsible.

The county did charge ours with sexual assault, but as a juvenile and we were not charged. We were lucky. This child was on the Sex Offender list. It could be said that it is also in this child's best interests for him to stay in a self-contained environment. The county will have no qualms about pressing serious charges. Sex crimes are never taken lightly. Our boy was thirteen.

 

[susiestar]

Follow what slsh has said. In addition, get an attorney to help you because this can be a legal maze with little help and confusing and circular rules. If the hospital insists on discharging him before you can find funding, you NEED an attorney to help you. I would refuse to pick him up, and this can lead to the state pressing charges against you for neglect or abandonment. in my humble opinion the charges are absurd, because you are not attempting to neglect or abandon him, you are attempting to get him treatment and keep the rest of the family and community safe.

One thing that might help is if you can get child protective services to see that evaluation and say it is dangerous to bring him home. Then they are FORCED to help you. It can be hard but insist they put it in writing if they say this. Or send a letter per slsh guidelines backing up the conversation.

I found funding shortly before we decided to let my son go to my parents, and to let that funding be used to help another boy. I got it by calling with a short synopsis of the problem to everyone who I thought MIGHT know of a program or placement that could help. In the hours my kids were at school over 2 days, I filled a legal pad with people I spoke to. I not only asked them if they knew of a program/placement, I asked them if they knew of anyone who MIGHT know of a program/placement. I got an acquaintance who knew my son and his potential, if he got the help he needed, to speak to a friend who ran a very highly regarded boys home about an hour away. He arranged scholarship and other funding sources due to this, and to his belief that a mom who did all that work, made all those calls and who could still cry because she felt her son slipping away deserved help. I started with the Reverend of a local church where my children attended and took ANY lead anyone could give me. If I got an answering machine, I left a message AND called back in 2 hours or so. I also spoke to the Resource Officer at the local jr high. He sort of got into trouble for helping me because he gave me a list of programs and phone numbers that he had in his files. No one told him not to give it out to people, parents or otherwise. A higher ranking officer called and demanded it back, so I gave it, but I already had not only scanned it into my hard drive but printed multiple copies and given them to our therapist (who was shocked at the list - she had not heard of most of them and she was by far NOT new to her practice or the area), a pastor of a different church who had been helping me, and a friend who worked at the local youth shelter. I never did tell the officer that I handed the list out - which probably saved the Resource Officer's position.

So if you can, speak to everyone you know. You may not find help in your state. Often help for this is very specialized and you have to travel to find the best placement for your child, not just the closest one. If NOTHING else comes to mind, you might try that place in Dallas that Dr. Phil speaks so highly of, the neuroplasticity place. I am sure you can find some link to it on his website. Treating sexual issues in a young man, esp one with autism and other issues, can be very difficult. So be sure to go for the best option you can find.

If nothing else, and you are too frazzled to research who to call and how to find them, send me a PM and include where you live and I will try to do some research to find who to call in your area to find the funding, based on the things that slsh recommended. I can honestly say that she is one of the BEST at finding funding and forcing it out of the various organizations who are there to take care of these problems. I have long been in total awe of the way she was able to find funding for her son to get help. She NEVER took "sorry, we cannot help you" from them, she found ways to use the law to FORCE them to help her. So her guidelines/roadmap/suggestions for this are the absolute gold standard in my opinion.

 

[HopeFilledMama]

Hi Mama.
. Good luck.

Thank you so much for this very wise "battle plan". It feels overwhelming, I am not versed in legal things. But I will begin working on each step. I do have connections to a legal firm in Nashville that was going to help me with a violation against my son due to a refusal of placement due to his diabetes (they led us on for 3 months, then denied the day before admissions). But we found Hillside, out of state, but a better program and I dropped it. I think they will help in this case. I just wrote something yesterday about being a fighter. Guess I need to get my boxing gloves on! Thanks again. I will keep you posted. I'd actually like to hire you!

 

[HopeFilledMama]

I wanted to update you all on phone conversations I had yesterday. I found out that the insurance company is not forcing discharge. They only ask (in every conversation) as part of their required questions.

It all boils down to Jonathan's therapist is not fighting for him to stay. While he is a nice, amiable, charming (speaks with an Australian accent) man. He is lazy. He has not given me monthly summaries of Jonathan's care (I found out yesterday it is his responsibility - I've been asking him and he says he'll call someone who is supposed to do it). He won't implement basic visual supports (my son learns/retains way more with visuals); He uses a "script" for counseling that I think he uses for every child. He doesn't read charts, and I often surprise him with "things that have happened" that he has no clue about. No one...not the insurance company or the person dealing with the insurance company, had a clue about the results of the psycho/sexual. Once I made them aware yesterday, they completely backed off on any thoughts of discharge.

Maybe the counselor is burned out. But this is my boy. And for him it is life or death. He has multiple levels of needs...Autism, Type 1 Diabetes (and other auto-immune issues as well) Sexual trauma, PTSD, ODD, ADHD. The Type 1 Diabetes alone keeps him from many residential placements due to liability. So he needs to stay where he is. He is now (finally) making progress.

I can get to work on long term funding options, realizing that insurance is not going to pay forever. But for now he's not going anyplace soon.

 

[slsh]

Some resources in your state (most, if not all, will be at no cost to you, at least in my experience):

For Special Education advocacy - These types of organizations have been, in my experience, always the *very* best: http://www.tnstep.org/about/story.aspx

Another children's advocacy agency - geared toward children with mental illness: http://www.tnvoices.org/programs/

This is the federally funded (I think) protection and advocacy group in TN - check out the resources tab: http://www.disabilityrightstn.org/

Also good old ARC - https://www.thearctn.org/Resources.php

Protection and advocacy group that is state funded - https://www.semel.ucla.edu/nadc/support-resource/tennessee-protection-advocacy-project

It is daunting, and can be frustrating, but take good notes and call everyone you are referred to. You don't have to be an attorney. Just be the warrior mom you've been all along When necessary, don your rhino skin (thick enough to survive the dimmest of bureaucrats/most out of control raging challenging kid, LOL) and keep on going.

You've already done an excellent job - especially in keeping on top of the most current information and disseminating it to the folks who need to know. Unfortunately, it sounds like you are going to have to stay on top of his therapist (not uncommon in Residential Treatment Center (RTC) settings), but... you are doing a great job.

 

[slsh]

TN dept of mental health - their TDMHSAS helpline might be a resource - http://www.tennessee.gov/behavioral-health/topic/programs-services

TCCY (https://www.tn.gov/tccy/topic/ccmh-home ) might also be a resource, though I have to admit I'm leery of any agency that produces "reports", lol. IL has been reported to death but doesn't actually DO much of anything these days.

And of course NAMI - http://www.namitn.org/nami_tn_home0.aspx

 

[Copabanana]

Maybe the counselor is burned out.

You have the right to insist upon a change of therapist. I would tell the program manager/director that your sense is that the current therapist is not the right match and the reasons why. I would not back down, no matter what he says. Where I have worked the patient always had the right to change therapists. Even in prison. I would request to have an interview with 2 other therapists and the right to pick one of them. I would ask them about how they will approach treatment and what they believe to be your son's potential for change. If they are not hopeful, I would never consider them. You know he can change. You do not need anybody near him who will not believe in him.