Looking at residential- others' experiences?

[landslide]

My daughter is 16 y/o and has had a terrible year, with worsening externalizing behaviors, including running away, stealing, drug abuse and sexual acting out.  We had been trying to stabilize her at home with in-home and outpatient services (she had already been terminated from DBT for refusing to do any work), and things did not improve.  After the last time she ran, which was for 5 days, her biological dad caught her at her cousin's house, showed up with police and took her to his house, which is far enough away that she has no great ways] to run.  We are now working with our in-home crisis stabilization therapist to get residential treatment.  My daughter has no idea this is the plan, because we are sure she will run if she finds out.  She thinks she is going to create a brand new life at her dad's house and wants to pretend she has no problems.  We are working with our insurance to find RTC options, and I don't know how many choices we will have.  I would love to hear from anyone who has had their child go through residential treatment, as this is whole new world for me.  To be honest, I am feeling pretty hopeless about my daughter in general.  I want to believe more intensive care will help her, but I truly feel like I don't even know her anymore.  Her illness has gotten so bad, she has completely detached from us, and she truly believes all her problems are our fault. 

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[bpdmom1]

Very stressful!

My daughter is currently in a theraputic boarding school.  She just turned 18 and has been there since August.  We were desperate and hired an educational consultant to find a good fit.  Since she has a physical disability they couldn't put her through wilderness first like the do for a lot of the kids.  She was first assessed at then placed at a theraputic boarding school, which we've been happy with.  We have weekly calls with her, her therapist and life coach, regular visits, family sessions.  She does yoga, track and did swimming and theatre among other regular high school classes.  They do community service.  They provide workshops for the girls and the parents.  They don't just focus on the girls, but the entire family.  After they get to phase 3 they come home for visits and start interacting with some friends.  By the time they are on phase 4 they have limited use of cell phones and more freedom intergrating into the real world.  My BPD daughter is on phase 2, mostly because she has been stuck on the guardianship/checking out (had to get guardianship as she had decided she was checking out when she turned 18).  After the first 3 months or so she had a great attitude and stated she was glad she was there and would be angry if we checked her out.  I wish I could say that she continued with that attitude, but hasn't. 

It was really hard for us trying to figure out how to get her to the center.  We worked with the educational consultant, who talked with her and she surprisingly agreed.  I think she knew her life was falling apart and felt the educational consultant was on her side.

Hope all goes well.  Keep us posted.

[lbjnltx]

Hello landslide,

I'm sorry to hear that her current treatment plan is not working.  Trying to keep our kids safe from themselves in the outside world is near impossible. 

I think you are wise to consider inpatient care for her while you still have the authority to make that choice.  Giving our kids every opportunity for healing is our parental responsibility and it comes with a dose of hopefulness.

If you would like to read about my d's 10 month RTC stay you can start here:

https://bpdfamily.com/message_board/index.php?topic=120563

There are links to months 2-10 at the end of page 1.

Like your d my daughter didn't invest herself in DBT so we took a different approach in searching for RTCs.  It was the right choice for my daughter as she fully invested in the flexible program she was in.

lbjnltx

[Bright Day Mom]

BEST decision we ever made. We didn't go thru a consultant as our State/County provided us with a CMO worker to navigate the RTC waters and we couldn't be happier!

It has only been 3 months of a 9 month program and the difference is AMAZING! Our D has even said it SAVED HER LIFE.

Lots of well wishes to you and your family.

[looking_for_answers]

I will echo Bright Day Mom and say it was the best decision I ever made.  My daughter spent 12 months at a RTC in Utah (we live on the east coast).  She was almost 16 when she arrived there.  I felt like we had exhausted all other options and could see that if there weren't big changes before she turned 18 that things would be really bad and I would no longer have any control over the situation.  I followed the advice that lbjnltx has often posted here, worry less about location and more about finding the right fit for your child.  My DD has now been home for 7.5 months.  She continues with outpatient therapy.  She certainly still has some struggles but is now equipped with the skills she needs to cope.  She will finish high school next week and is excited to go to college in the fall.  Two years ago I wouldn't have thought this was possible.

Good luck and please take some time to take care of yourself too.

[landslide]

Well, bad news is she ran away again. I am really scared as I'm not sure we're going to get her back.  I am so frustrated with mental health systems right now.  While waiting, we have our daughter slide right through our fingers.

[lbjnltx]

Oh dear.

If this is typical for her she is most likely where she has been in the past.

Have you made any decisions on RTC yet?  Getting a plan in place does take time and careful consideration.  How can we help?

lbj

[landslide]

Well, the good news is she came back.  The bad news is my insurance denied residential care.  The reviewer's rationale was that my daughter is not willing to engage in treatment.  Also the fact that being 16 is considered age of consent for mental health care.  Evidently, her high risk behaviors have not resulted in enough damage or cost to our insurance to make it worth their while to cover care 3 professionals and parents are recommending.  We will do the appeal process, but I am beyond jaded at this point.  I am a clinical social worker and therapist by training so I've always known about holes in the system from a professional standpoint.  Watching my daughter fall right through them is another matter.  I'm going to try to call the state mental health ombudsman's office tomorrow for additional counsel.  I really am at the mercy of my insurance as we have no other funding available.   

[lbjnltx]

Good to know that she is safely back home landslide.

Navigating the insurance industry for inpatient mental health care is a disgusting experience.     You have the support of the professionals providing  her care and that can be your ace in the hole to get coverage.

Other options for funding that others have had some success with:

Funding through the school system for the educational portion of inpatient care

Using educational savings accounts if you have one for her

Low interest health care loans (there are companies who specialize in funding RTC)

Second mortgage

I hope that you don't have to explore the above options and that the insurance company relents through the appeal process.

Have you decided on a facility and contacted them about helping you get funding?  Most are well versed on how to navigate the insurance industry and can be a valuable advocate for you.

lbj

[landslide]

I have not decided on a facility although I have some recommendations from her care providers.  I unfortunately don't have the financial picture to allow incurring significant debt for treatment, in part because I have a 9 year old with autism and need to provide for him, too.  Fortunately, right now he has everthing he needs and is progressing beautifully, and it breaks my heart that BPD is such a stigmatized, less supported condition. I will have to keep pushing to get the available systems to serve my daughter.  It frustrates me that the same treatment options are not available to everyone nationwide, but that is our healthcare system in a nutshell.

[Bright Day Mom]

I am glad she has come back; that must be beyond scary and I cannot imagine.

I hope you made some headway with your state. Our insurance does not cover residential treatment either, but our state does. It has not costed us a dime and the placement seems to be working well for ALL of us.

Lots of well wishes

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[bpdmom1]

We are working with a non-profit to help to get our insurance to cover her treatment.  So far we haven't been successful.

[landslide]

Thank you to everyone for all the support.  I heard back from our local ombudsman for mental health, and she sent me a ton of tips and ideas for the insurance appeal.  Hopefully between me and her caregivers, we can still fight it.  As a back-up plan, a 9-month long intensive outpatient program that specializes in girls with BPD issues is reviewing her info.  The only (and huge) problem is we can't count on her to stop running away.  She is back home after her biological dad and stepmom could only handle her for about a week, and I don't know how long she will stay put.  Her therapist put together a letter for the police asking them to take her to the hospital if she runs again, but my fear is that she will just disappear- get trafficked or hitch out of state.  It is so ridiculous that I can't protect my own child from herself because of the systems involved.  When I went to pick her up at her dad's she cried and raged all the way home, including saying some really insightful things about knowing that she can't trust people so she uses and manipulates them because she doesn't feel like she can handle being hurt anymore.  She talked about how she "used to be a good person" and can't stop hurting people so doesn't know if life is worthwhile.  I did my best to validate what she was saying and reassure her that she still is a good person but suffering terribly and not sure how to get what she needs in healthy ways.  A minute later, she would go on a tirade that everything was basically all our fault and ask if she could hang out with her drug friends.  I wanted to record the conversation and send it to my insurance company and ask if she sounded like someone who was competent to decide "not to engage with treatment" and whether they were willing to give up on someone who is in so much pain and feeling so hopeless.   

[jellibeans]

dear landslide

I just wanted to reach out to you and give you some support. You are in a difficult time right now and I know all too well how the insurance companies make getting the right help very difficult.

My dd18 has been to several places and we did at one time hire an educational advisor. I will tell the aducational advisor was a complete waste. We did get a refund of 50% but they made the process more painful and delayed our dd getting the help she needed. You might have a different experience so I don't want to discourage you but the company we used we felt were getting kick backs from the RTC. They tended to recommend the same places to all their clients reguardless of their issues.

Any place to take her to will not be covered 100% by insurance. It is going to cost you and cost you dearly. We spent well over $100,000 last year alone. some of it was worth it and I will say some did more damage. It is important that you do the research and visit if possible. There was a link to questions you should ask a RTC somewhere on this site I thought so try and find that.

One thing I think really helped us is when we learned our dd was a drug addict... .it was easier getting services for her... .it seems more difficult when mental illness was the main issue. so it might help if you sought treatment for that first.

My dd was also a runner so I feel for you... .there are many RTC that are equip to deal with that and hopefully they are far enough away she won't be able to run far.

Can I ask you what state you are in and what insurrance you have? I have never heard of "not to engage with treatment" my dd really never wanted the help... .addicts rarely do so this seems like a really odd thing your insurance company is telling you.

I do think it is better to do something now when she is under 18 than later. I know things seem bad right now for you but believe they will get better... hang on to hope.

[landslide]

Thanks Jellibeans, what you wrote was very helpful to me.  We are in Minnesota and have Medica, which makes this all the weirder because we supposedly have great care here.  I have been so exhausted I haven't made any progress on the appeal.  She has been home while we are waiting to figure things out, so everything just feels very day-to-day.  The small positives are: no running since she came back to our house, no drugs, less eating disorder behavior.  But that is all with no engagement with the "real world" as she is not back in school yet.  Hopefully we get intensive treatment in place before the next big down slide.  I feel so sad and anxious about her situation and terribly let down by the systems that keep failing her.     

[Bright Day Mom]

I know how stressful it can be while in limbo, trying to keep our kids safe while arranging for the next step in treatment.

I know you have been battling with your insurance company and are trying to go thru the grueling appeals process. Have you been assigned a  case manager from your county / state?  I'm not sure how your state works, mine has been surprisingly helpful. Our D entered an RTC back in Feb and the cost to us is ZERO. 

Have you been in touch with NAMI?  If not, it may very well be worth the call.

Please know you are not alone in this as there are many that have walked similar paths and can offer a good sounding board/true experiences.  Though it may not seem it now, things do get better.  In the 3 months my D has been RTC our family has improved; the family sessions and our own education (reading as much as I can) in learning to communicate more effectively is allowing for a more relaxed conversation and not battle every time a family member open their mouths.

Good luck in the process and keep posting.

[jellibeans]

landslide

I am in the process right now of trying to get my dd into Hazelden in MN Plymonth... .she just relapsed again this week pretty hard. If you can seek treatment there they can help. Don't give up... .I know it is over whelming but just try and take things one problam at a time. Do the most important first then go down the list. It is worth a call to hazelden to see if they can help you.

[landslide]

Thank you again for all the suggestions.  Where we are, our county wasn't willing to work with her because at 16, they expect them to take an active role (like that is going to happen).  If we can get our insurance to authorize residential, they actually cover at 100%, which is assuredly part of the reason they are denying.  Jellibeans, my daughter has used drugs intermittently but hasn't yet developed enough of a habit to even have a substance use disorder so CD treatment hasn't be in the cards yet, although I have no doubt she is capable of getting there, and I agree with you, it seems like the system is far better at acknowledging the need to address CD.  I have contacted our local ombudsman for mental health, and there is the still the first level of appeal through insurance and then going to the state commissioner.  It can't come fast enough.  We are sitting here tonight with her gone again, was supposedly going on a walk for an hour and it's 3 hours later, another call the police- the second we try to increase her freedom even slightly, she abuses it and leaves us feeling scared and frustrated, all over again.  It is helpful to hear that others were able to get there and that some kids do get better with a higher level of care. 

[Bright Day Mom]

I hope by this time she has come home... .I know this is so hard for your entire family. 

I pray she has come home and you are able to win the insurance appeal (in the meantime keeping her out of harms way and safe).