BPDFamily.com

Hi - I'm new to this group.  My 13 year old daughter likely has BPD as well as OCD, depression and ADHD.  She is currently on her 4th hospitalization in 2.5 months.  She also was released 2.5 weeks ago from a residential treatment center where she was for 42 days - and was hospitalized 2 weeks after release for self-harm/suicidal ideation.  She also is extremely reckless and impulsive and I don't trust her to ever be out of my sight when she's home.

I am struggling to figure out the best path forward for us.  She was rejected today from an unlocked RTC in California so it seems like our options now are locked facilities out of state.  It seems like there's just a lot of momentum going towards out of state RTCs with her case.  I am struggling with whether or not this is really the best option for her.  I've read horrible reviews for all of the locked RTCs and haven't seen any unbiased studies that show outcomes for these programs - except for just whatever the RTC itself is putting out.  Also, since she's been in the hospital/RTC for so long, I feel like we're just losing touch with her and she's just being sucked into the system.  I wonder if she'll come out of it even more broken or totally disconnected from us.  It's been almost impossible to communicate with her as all visitation is stopped because of COVID and phone usage is discouraged (they have one phone for 20 kids at the hospital she's at).  I rarely hear from the hospital about what's going on  so I just feel out of the loop, confused and disconnected. 

I wonder if we could keep her at home, have her go to a PHP and try to hire help at our house to help us.   I've read about "wrap around" services and am wondering if this could be an option though I'm not sure how we would even go about accessing help like this.  It just feels like the best place for a kid is at home with people who love them and want the best for them - not half way across the country with strangers being paid to watch them and other disturbed kids. 

I guess I'm just looking for other's experience/feelings on this? Thanks in advance.

sobe, welcome, glad you reached out.

13 is so young... my DH's youngest is 13. That's really hard. I get not wanting to send her to a locked facility. It must be beyond intense for RTCs to be on the table for you guys.

Quick brainstorming:

Any other diagnoses than the ones you listed, for example, an eating disorder? It's possible that a facility specializing in a different diagnosis could still provide "enough" support for BPD issues, and could be a better (more homey, more family inclusive) fit than the locked RTCs.

Is your school district willing & able to provide the intensive PHP/wraparound stuff you're thinking of? My stepdaughter (SD13) just got SPED assessed last year and it has been a ROUGH start having the district follow through and provide updates on her accommodations. Different districts may be better than others. I heard from a MH professional that our district does the bare minimum and won't, for example, do comprehensive screening in the initial assessment, rather they screen only for what is requested, and if you don't know to request more they won't do it (because then they are on the hook for providing more services).


Anyone in your area work as a SPED consultant who could walk you through your legal rights? I know your D isn't necessarily "special ed" in the traditional sense, but neither is SD13 (more learning disability not otherwise specified).

Any lawyers in your area specialize in SPED law/IEP law/504 plan law? If you go the route of putting together a home-based program you may need to be prepared to do intense advocacy for your child to get all legal accommodations. Working with a legal professional could be a net plus.

...

Was your daughter compliant with treatment, generally (I mean apart from struggling with SI/SH) -- did she seem to want to work, improve? Did she accept her diagnoses? Did she have a therapist/treatment team "at home" in your town? Still in touch with them at all? If so then if you did do the "home based PHP/wraparound" route, getting a MH professional to help you too would be another net plus.

...

There are a couple of links and comments in this recent thread:

https://bpdfamily.com/message_board/index.php?topic=351811.0

that you can check out. Take whatever helps your situation, I know it's not one size fits all.

...

In a way, it's good that she's only 13 -- I think it does get harder as they get older. It doesn't make it any easier on you, though.

Hope there's some helpful food for thought, and let us know how you're doing (whenever works for you)...

kells76

Hi- Thanks so much for the thoughtful response.  I'm just so sad and overwhelmed and confused. 

I am working with her school to get her an IEP but I really don't know what options are available through the school.  You're right that it might make sense to ask a lawyer to help.  I hate to pull the school into this as they're a small district and I don't want to end up costing them huge money for my daughter.  We recently moved her into this school (it's a small charter school that is it's own district) and she's really only attended 4 days since she enrolled in between hospitalizations/residential stays.    Question:  Do you know if we try to get services through the school if they are going to suffer financially or will the state step up and help them pay for an expensive special needs kid? 

I spoke with an advocate for our county and they have "wrap around" services including a rapid crisis response team but it's only available if you're on Medi-Cal.  So, I'm trying to cobble together my own wrap around service and spending hours a day calling people and organizations.  I would really like a rapid crisis response team so we don't have to call 911 every time she threatens to kill herself.  We do have a "local" therapist but she's in a different state and city (we live on a state border) so isn't familiar with resources in our community. 

I talked to my daughter today and she told me they were planning on discharging her from the hospital on Monday or Tuesday - and they haven't even told me this (it's Saturday today).   She just told me if she comes home she'll be back in the hospital within 2 days.  It's been almost impossible for me to talk to anyone in charge there.  I haven't talked to her doctor in six days despite daily calls and her social worker just told me it was up to me to decide what to do with her.  The advocate with our insurance is equally useless - her only help was giving me a long list of out of state locked RTCs - some of which have been shut down due to abuse. 

If I can ever talk to her doctor I want to ask him what he thinks the real risk is with her coming home.  I am also thinking of trying to find another RTC in California that will take her.  I think it's going to be hard given her extensive recent hospitalization and other behaviors. 

I know my situation is pretty much impossible but thank you for giving me a place to vent.

Hey sobe, good to hear from you again! Hugs as you're going through this  :hug:


We are also super new to this, and it's also complicated for us because I'm just the stepmom, so please know I am NOT an expert in IEPs/SPED stuff. But I will share as many ideas as I can!

You can often do what's called an "initial consultation" with as many lawyers as you want. This is a first call or meeting, often shorter (~30-60 min), but it can be free or low cost, because you aren't "retaining" them, just seeing if they are a good fit. But in initial consultations, you can share your situation and goals, and they can tell you how things usually go in your area. So, for example, you might describe your D's situation and needs, and your goal to get extensive (likely "above and beyond") support from the school district, and a L specializing in education and/or family law can tell you something like "OK, in this county, you would need to do XYZ to get that goal. Doing ABC rarely works".

You don't have to decide right away if you want to retain the L. Meet with a few and then if you get most of your questions answered, great, and if not, then you can compare prices, personalities, and abilities of the ones you met, and pick one that best meets your needs.


On the one hand, no, I don't know for sure. You could try looking through links and articles on the Wrightslaw (SPED law & advocacy) web site to see if they answer that question:

https://www.wrightslaw.com

This site also addresses funding questions;

https://www.understandingspecialeducation.com/special-education-funding.html

On the other hand, as "selfish" as it sounds, consider going in to any of these meetings feeling like "hey, not my money!" I know it sounds "bad" but it's your child, and you are allowed to advocate strongly for any and all of her needs. It's not your problem figuring out how the school will pay for it. Harsh but maybe a more helpful mindset.


That's hard having to reinvent the wheel. So frustrating that the rapid response team is only for Medi-Cal. You may have already thought of this, but in our area, there is a non-emergency "911" line (not 911, obviously  lol ) that sends a mobile team. It's not rapid response but it is available to everyone. So, you could consider calling the police or fire non-emergency phone #, and asking what they provide, and if it's for everyone.

Has your D's therapist been in touch with the hospital where your D is at?


Geez. I really feel for you. It's so frustrating when it seems like the professionals put their responsibility back on the parents, without working together with parents.

Same question as above -- I'm wondering if maybe the hospital would respond "better" (ugh, but true) to another professional, so if your D's therapist bugged them, could that help?

When your D says "she'll be back at the hospital in 2 days" if discharged, do you think that is coming from a place where your D recognizes that she needs more help? I.e. she recognizes that her behaviors aren't managed yet?

In addition to the calls, can you document in an email to the Dr and hospital what your D said to you? Get a paper trail of your disagreement with her discharge: "On Friday at 5pm my D said in our 20 minute phone call X, Y, and Z. I do not agree with any assessment that she is ready for discharge and do not consent to it. If I don't have written confirmation of your agreement (that she is not ready to discharge) by 5pm on ABC day, then I will do PQR"

That is sounding like lawyer territory, perhaps? Quick thought, if you decide to do some initial consultations with L's, in addition to looking for ones with family or educational law background, perhaps one with medical/hospital law background?

It just seems crazy that a hospital could say "sure, your minor child is ready for discharge" if you have documented to them that your child talks about continuing the exact behaviors that brought her there.


It makes sense to want to look in state, both because it's closer to home and because of legal/insurance hassles.

That reminds me, does your D still have a "normal" doctor/pediatrician in your town? Same as above again, would that doctor be willing to call the hospital to get info? It sucks that the center isn't responsive to you, so maybe enlisting MH/med professionals "on your team" to contact them will light a fire under them.

And I know you've probably thought of a lot of this already, so my apologies if it's redundant.

Keep posting whenever works for you, and if anyone else is reading this thread and has some SPED/IEP/504/wraparound experience, please chime in -- I know there's so much depth out there.

Hang in there;

kells76