BPDFamily.com

Hi everyone,

I hope you are all doing well today! 

I am in need of some guidance regarding Social Security Disability benefits that my 15d may be entitled to.  At the moment she is hospitalized at a wonderful facility in NC.  This is the first facility where I actually feel that they know how to help her.  As we all know, our loved ones could have the best opportunities offered and available to them but if they refuse to apply the therapeutic coping skills they are being taught then there is really nothing that will change.

I was wondering if SSD would enable me to seek out additional long term facilities that are not available with her present insurance which is medicaid.  Medicaid is actually required in order for any patient to be admitted to a treatment facility, at least thats the case in NC.  Since she is not showing any consistent progress, and she is presently in a state of crisis, I fear that by August 1st (her estimated date of discharge) she will have to be transferred to another facility for continued treatment.  This would require us to broaden our search to include out of state placement which medicaid no longer covers under any circumstance.

SSD was suggested by her case manager.  He said that if she was able to be approved for that then she would have a better chance of finding a reputable out of state treatment facility.

If anyone has any experience and is able to explain the differences between medicaid and the benefits that go along with SSD, I would be forever grateful!

Hope you all have a great day!

Googie

Hi Googie,

I don't have any experience with this, just wanted to send you a   and a  |iiii.

Seems like you are on a track to discovery of new possibilities of help for your dd.

All the best!

We have private insurance as well as supplemental medicaid, or Badger Care, (we live in Wisconsin) for our 15 yr. old D.  We received medicaid through the Katie-Beckett Program.  We have received lots of support thru our county health and human services.  We also are in the process of getting a "waiver" thru the county.  They are offering art therapy (in our home) and a mentor for our D.  The longest our D has been hospitalized was 3 weeks and that was in a state hospital.  Over this past year, the county provided us with free intensive in-home therapy with an agency that contracts thru the county (St. Charles Youth &  Family Services).  Their theory was to try and keep our D "out" of residential treatment and help us keep her in the home.  They came into our home 3 times a week for one year and it helped us a great deal.  We learned a lot this past year.  Best wishes and good luck!

Googie

I'm not an expert but... .  my ds is on SSD and Medicare (not Medicaid).  He has been in many treatment facilities that we paid for before he had SSD. 

Now he is in one in New York State that is non profit... .  they take his SSD and he gets residential treatment and everything is covered.

My best advice is that wherever your dd is eligible for go and visit the place a few times.  Talk to the residents, the staff, get referrals and go with your gut.

My ds has been in some very expensive places and the no frills place he is in now is better than any place he has ever been in. 

Thank you guys for responding. 

I just now realized that I did not explain why I was asking about SSD and I should have for it all to make sense. 

My daughter is in a wonderful facility since February 1st.  There were a few glitches that needed to be worked out in the beginning but everything is as it should be now.  This is her 6th hospitalization, second long term.

We recently had a scare with her medicaid.  I was surprised to learn a lot about the cuts that have impacted mental health services.  Apparently, NC just had another round of cuts, the first occurred on the first of this year.  This recent one was directly targeting psychiatric treatment residential facilities.  The cuts will affect the amount of time a patient is allowed to remain in the facility, even if they do not meet eligibility requirements for discharge. 

I was seeking info about SSD and Medicare just to see if that would be the better route to go, or if there was even any benefit at all.

My d is not doing well.  In fact, they are having a special staffing meeting tomorrow to try and tweek her treatment and ensure that they are utilizing every possible resource available to help support her treatment goals.  If she continues to regress at this point we will be in a very difficult dilemma.  They are projecting a discharge date of August 1st, which would be typical since that is exactly 6 months from her date of admittance.  With the new changes (that even the medicaid workers are not familiar with nor have had any extensive training or explanation of allowance changes) they do not have to approve an extension because they can terminate payment on the date listed on the paperwork that is filled out and submitted on the day of admittance. 

I figured that maybe SSD/Medicare may be more accommodating since the people who receive those particular benefits are disabled and have medical/psychological needs.

I am continuing to try to find out how these changes will affect her stay, and also find out what would happen if she was a risk to herself or others... .    would they deny her and refer her to community based support services since multiple hospitalizations have not helped her?  I'm not understanding what their point is and how the changes could potentially put her and many other kids and adults that are in need of residential programs.  If my daughter wasn't in a residential facility during these last few months and was at home with the intensive in home services we had prior to this hospitalization, she absolutely would have either ended up in a juvenile detention center, or God forbid, succeed with her intention to exit this world.

Unless they are hoping for the juvenile justice system to pick up the slack, which has happened in the past already (deinstitutionalization), than from the information that I was given these cuts are completely against the ADA Act.

Well, now I know why I did not go into detail in my original post, lol.  It makes me angry.

It's mindfulness time.

Googie

Hi Googie,

SO sorry that you are having to go through this!  Frustrating!

I don't have any experience w/SSI or Medicare/Medicaid.

Is going through the school system for placement under an IEP an option at this point?

The Parity Act was supposed to provide better care on one hand and then they take it away with the other hand

Have you considered talking to an attorney?

 

lbj

That will be my next step.  They called a special staffing for this morning to re-evaluate everything from her dx to every tiny detail you can think of.  Her therapist is amazing and is extremely passionate about putting 100% into every one of those kids.  I swear he has a sixth sense when it comes to BPD and he is a wonderful DBT instructor/guide.  I finally have people that I trust and truly believe will help my daughter if she would only allow them to.  I have NEVER EVER said that about any other facility before.  I have had great therapists through Easter Seals for Intensive in home, but its a completely different ball game when it comes to a residential program.

:)

Goo

Googie , can I ask where in NC. I am in NC also. I was told UNC Chapel Hill has a good in patient program. I am looking for one for the next crisis.

Thanks.

  The program that is in Chapel Hill is very good, at least thats what I have heard.  They never have beds so she has always been transferred to whatever facility has the first opening that I approve of.  The problem with denying a referral is that they will pressure for discharge after they feel they can no longer justify keeping her so the circle continues until we luck out.

The facility that she is at right now is very good and I am very impressed with her therapist and her first case manager.  Her new case manager has very little experience and I am starting to become agitated by the limited amount of knowledge he has.  He's in training but my daughters case is extremely complicated which is obviously causing him some confusion.  

First go ahead and fill the paperwork for ssd.

be prepared to get rejected by them. If you are in luck then you may get approved right away.

Otherwise you need to hire a very good disability lawyer.

Hope this  helps.

peaceandhope