Help is NOT on the way

[Quama]

I can't seem to get anyone to help us.  My child is 15, has been hospitalized once for threatening suicide, RTC once for 45 days and dropped out of DBT IOP after RTC because of oppositional/defiant behavior.  No school, no friends, isolates, dissociates, threatens suicide though I am relieved there is no longer a real plan around it.  I explain to insurance and a new RTC, one that is in network, that my child is unable to socialize, unable to attend school, paranoid, has an eating disorder, feels persecuted, dissociates, splits, wild mood swings... .we all know the list.  They are telling me that unless the child is currently threatening to hurt themselves or someone else, they probably do not qualify.  That it will take 2-3 weeks for insurance to decide. And even if my child does get in, insurance reviews every 3 days so they would probably only get to stay up to 2 weeks.  That's useless.  How can this adolescent make any progress in 2 weeks?  My child understands that they need help.  They want to go, want to get better.  What about the kids who are trying but can't get there alone?  It seems they have to attempt suicide to be considered ill enough to deserve treatment.  I'm a single mom, have to go to work, can't be the therapist, can't afford private pay RTC.  It's such a struggle to get my child to therapy, their anxiety and depression make leaving the house impossible most days.  So what options do we have?  I feel like the healthcare system pretends we don't exist. The longer my child stays out of school and stranded in this nowhere land, the more likely they will never leave it, or decline back to self-harm and planning suicide.  I am so fearful that this will never improve to the point my child has a life.  I'm responsible for that now, and I feel absolutely alone, helpless and beaten. 

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

[lbjnltx]

Hi Quama,

I've been where you are except that I was able to take charge of my child's therapy and attend with her.  What helped ME the most was having skills and knowing how to handle her, I learned that here.

What helped HER the most was going into longterm RTC at Falcon Ridge... .and yes, we had to self pay.

Have you worked with the school district to get an IEP that accommodates your daughter's needs?  Reading this info may give you a new avenue to explore:

Lesson 5

Educational Accommodations for Students with BPD

Objective: To gain working knowledge of available programs that can improve our children's educational experience and help them succeed in school.

When our children's emotional instability, difficulties with interpersonal peer relationships and comorbid disorders negatively affect their ability to attend school regularly and participate academically we worry about their future. Having  voluntary or federal/state educational accommodations can help our children succeed academically and socially in their school environment.

Directions: Read the following articles and parent discussions. Participate in the discussions and ask any questions you may have.

What is an IEP?

An Individualized Education Program is a federal and state mandated education plan for a student with disabilities. An IEP allows the student to participate in the "normal" school culture while providing specialized assistance where it is needed. An IEP is available for any child who meets the requirements for special education up to High School graduation or prior to their 22nd. birthday.

https://bpdfamily.com/message_board/index.php?topic=273076.0

Video: www.youtube.com/watch?v=q2XlAWcMAUkCached

How to obtain an IEP

In order to obtain an IEP the school must determine through a full evaluation if the child's disability has an adverse effect on the child's educational progress. An IEP team includes parents, teachers, a school representative and a psychologist or other person who can interpret the evaluation results.  Parents may also bring professionals to help advocate for their child's needs. The IDEA-Individuals with Disabilities Education Act requires the IEP to be developed based on the child's needs rather than preexisting programs or services.

https://bpdfamily.com/message_board/index.php?topic=273076.01

Video: https://www.youtube.com/watch?v=YllpxhW5CUM

Parents discuss the IEP process:

https://bpdfamily.com/message_board/index.php?topic=125391


Implementing an IEP

Services under an IEP may include: Specially designed instruction, Related services, Program modifications, Classroom accommodations, Supplementary aid and services, and the Resource room.  The Specially designed instruction includes methods of delivery, performance methods and criteria which can determine how the IEP is put into action.  Classroom accommodations, specialized transportation, and other related services are part of the Individualized Education Program.

https://bpdfamily.com/message_board/index.php?topic=273076.02

Parents Discuss Independent Education Plans

https://bpdfamily.com/message_board/index.php?topic=168656

What is a 504 Plan?

If your child is struggling in school, you may be looking for ways to improve the educational experience.  If your child doesn’t qualify for an Individualized Education Program (IEP), a 504 plan may be a good alternative.

A 504 plan can give you peace of mind. This is especially true if your child already gets informal accommodations at school and you want to make sure they continue. But first, you need to know what a 504 plan can provide, what your rights are, how to pursue a 504 plan and what makes a child eligible. The more you know, the better you can advocate for your child.

https://bpdfamily.com/message_board/index.php?topic=273149.0

Video: https://www.youtube.com/watch?v=MW5NlZvPj_I

Parents discuss Educational Accommodations 504 and IEP

https://bpdfamily.com/message_board/index.php?topic=198796

What is the difference between an IEP and a 504 Plan?

Both Individualized Education Programs (IEPs) and 504 plans can offer formal help for K–12 students with learning and attention issues. They’re similar in some ways but quite different in others. It is important to understand which laws apply to each plan. Here is a comparison of the aspects of each and how they differ.

https://bpdfamily.com/message_board/index.php?topic=273149.0


Here are some general threads that may be of interest while we develop new workshops and articles... .

Boarding schools/educational consultants?

https://bpdfamily.com/message_board/index.php?topic=182836


SS Disability

https://bpdfamily.com/message_board/index.php?topic=178545.0;all

https://bpdfamily.com/message_board/index.php?topic=199881

There were many girls at Falcon Ridge that were there under an IEP, some had both IEP and Insurance coverage.

lbj

[Quama]

Thank you.   

My child has 504 but does not have an IEP.  We tried just over a year ago but at that time were denied.  The school said test scores were good, the ability was there but my child just had to "buckle down and get to school."  We didn't have BPD diagnosis at that time.  We moved from East Coast to West Coast since then.  That's when things went downhill very fast.

I'll do some research.  I don't know if I can get IEP if they are not attending school.  Child has severe anxiety when I even talk about going.  The RTC in my area actually runs a therapeutic day school in my town, which is why I was so hopeful to get in.  You cannot attend the day school without a referral though and child isn't capable of going right now anyway.  It was a path to get there.

The other option I'm considering is Lava Heights Academy - a sister school to Falcon Ridge.  But we decided to try for local RTC and shorter duration first due to child's fear of being so far from home.  But child has agreed, if local option is not successful, then Lava Heights is next step.  I'm not sure how to pay for Lava Heights, but I'm sure if it's the best/only option, I'll find a way!

I can't tell you how much this site has helped me.  It's why I am reaching out with my despair today.  Sorry to vent but you are the only group of people that understand what I'm going through.  I have watched many of the videos and working my way through papers and books.  I'm finding the book "Loving Someone with Borderline Personality Disorder" by Shari Manning to be very helpful.  These resources are one of the reasons I think my communication is a bit better and child is now willing to go back to therapy.  They surprised me this week by going to bookstore and getting several books on managing anxiety, eating disorders and guide to DBT.  That is a new level of openness that I hope I can capitalize upon soon. So to all of you - and especially you lbj - THANK YOU!   

I will continue to fight to get my child the care they need and deserve.  Just need a booster shot once in a while.

On a similar note, I signed up for a class through NEA called "Family Connections" and asked to receive training to become a group leader upon completion.  Classes in my area are full so I'm on a waiting list, but I am really looking forward to that. 

I'm expecting RTC to call back later today, I'm hoping for greater cooperation and some good news.

Thanks for being here! Q

[lbjnltx]

Good luck to you Quama.  A determined and well educated parent cannot be squashed or silenced. 

There are companies that make loans for treatment facilities and treatments that insurance won't cover.

Let us know how to help you further.



lbj

[DisneyMom]

Even after 3 hospitalizations and the hospital saying my DD was too dysregulated for their day treatment and recommending RTC, our insurance only covered the first 3 weeks of her 5 month stay. We lost 4 appeals, and it sucked. So I feel your pain. What I did was call our county mental health youth case management system. I was first told I could not be helped because we already had private insurance. Well we had professionals recommending RTC for her safety and no insurance coverage for that. I called NAMI and they told me to call right back and to not take no for an answer and to ask for the person's manager who told her my DD would not qualify. This time she agreed to help us. And we were able to enroll in state aid that covered a huge portion of her treatment. The state paid everything up front to the treatment center, and after we took her out, we got a bill for a portion based on our income. Basically, we paid about 6,000, whereas if we paid out of pocket, it would have been about 80,000. Plus I paid about 1,500 for a lag week after insurance stopped and before the state aid kicked in. Go seek out state programs. There is help out there and your child certainly is in need, and is certainly deserving care for her illnesses. Insurance sucks! I am sending you strength.

[Quama]

Hi - thanks for the encouragement and advice.  After checking out the options that insurance would partially cover (WOW! NO) I chose Lava Heights Academy in Utah.  My child loves the arts and I think this will be a great way of allowing them to express the pain inside and begin to clear up some identity issues they are having.  It was considerably less than other RTCs I found at $5500 per month.  Not saying that will be easy but it's not the $850 per day that the "awful place" would start charging the day the insurance stopped covering.  Which was about 5 days.  Not useful!  Now I control what happens, not them.  It has been another struggle to get my child to become comfortable with the idea of going to therapeutic boarding school for 9 months.  Many tantrums, suicide threats, NC threats, etc.  But with the tools I am learning on this site and the help of a great therapist I found, it's much better.  My child will begin October 16.  There is not enough time or space to express all of the emotions that I am feeling.  But the one I hold onto is HOPE. 

Oh yes, and thankfulness for those who do their best to understand and support us on this journey. 

More to come... .

[lbjnltx]

Great news Quama!

My daughter, sitting next to me is applauding you!

Please keep us posted on the progression of your journey.  I know it will be difficult at times because you will miss her as I missed my daughter... .AND all those emotions will be overridden by the HOPE you feel and believe in.



lbj