SSI

[cfh]

Forgetmeno

I also take Xanax sometimes for that exact same feeling.  It's like a physical feeling of panic in your chest.  Sometimes I think other people can hear my heart pounding.

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

[kellygirl601]

One thing I do recommend is to get a therapist for YOU.  This has helped me tremendously,  although when daughter is feeling ugly she yells at me saying I'm as F 'd up as she is because I see some one too... .

[mikmik]

Kellygirl,

Current Pdoc saw dd18 today.  DD drove herself, and was quite low.  Pdoc had not seen her like this before.  She is switching her from 200 mg Zoloft to 150 Effexor, gradually lowering one, while increasing the other.  Still wants her to use xanax for anxiety, tho it does not seem to work and even our pharmacy says it has addictive aspects. 

T called pdoc and said she STRONGLY believes dd needs something to stabalize moods.  Don't know if Effxor does both, depression and mood.  Know lamictal helps with mood, and you say your dd is on that, but my dd did not respond well a few years ago.  But Pdoc gave her nothing but the Effexor.  sigh.

Wish me luck.  Always in search for the next best drug!

I just keep hoping that more and more of us will have the success that lbj had with her dd.  Maybe there will be a time when we turn the corner with our dd's.

Good luck with your SSI process.  It is a valuable thread and I appreciate the honesty of this journey that you are sharing with all of us.

mikmik

[kellygirl601]

I always have such high hopes when she starts a new drug!  I know meds are not THE answer but they sure can make a difference!  I hope this is the one that helps your daughter.  Is Pdoc the psychiatrist?  I'm not sure of all the lingo here.  One thing that has really helped us is that now her T, my T, and her psychiatrist are all in the same group, same location and near our house!  My daughter signed releases and they all communicate and are on same page.  My T helps me to understand why my daughter behaves as she does and how to best work with her-this is huge for me as I am always feeling like I'm doing the wrong thing.  She also helped not to listen to EVERYONE.  I know some wonderful people, some even in the mental health field.  But, they are not my T and they don't know my daughter.  This also is huge because I had a hard time following everyone's advice no matter how well intentioned.  Tomorrow I will go with dtr and open the SSI bank account.  If you don't mind, I will let you know how it goes.  One thing that shocked my dtr is that she thought she would just be handed a check each month with no strings.  This will be an interesting journey, hopefully a good one!  Thank you all for letting me share,

Better outcomes to all-

Kelly

[Forgetmenot]

Hehe, my daughter thought that if she moved out that both her dad and I would have to pay child support directly to her.  Are you kidding?  She would spend it on Uggs and a few really expensive bras in about 5 minutes.

I am always amazed on how she can plan and manipulate, but can't function well enough to fill out a job application.

[kellygirl601]

Forgetmenot-

I can totally understand.   I know when some family and friends find out about SSI, they will laugh and/or make jokes but let them live my life with her and they would realize she does not think right.  They have told her to "straighten up" and "toughen up with the real world".  Really?  If they think a spank on the butt and a good lesson learned would be the end of it-BE MY GUEST!

[mikmik]

Kellygirl,

The Pdoc (Psychiatrist) is supposed to be on the same team with the T and with me (calling in to report what dd is doing, how she is behaving, as dd will not call psychiatrist)  Pdoc only wants to hear from dd (I am on release), so have appt with new Pdoc that the T likes.  Don't see her till first week in August. 

It is all about the right T, the right Pdoc, the right med, the right team, and someone driving the bus.  It is hard getting everyone on the bus, right now, waiting to get dd's current Internal Med doc on the bus too. 

We all need the good luck vibe in our lives, don't we?

mik

[kellygirl601]

Update-Went to the bank to set up the SSI account so that the monies can be released. I'm really having issues over the stigma of someone giving her money. The account is unusual in that it is for her but I am the only one that can access it.  The person helping me had never heard of such an account which made me feel so alone :'(  Don't get me wrong,  I dont want anyone going through this.  I also took her to get a replacement temporary drivers permit-she failed her road test horribly and had such s meltdown in the car screaming and throwing things that she lost the permit. I am very worried about her driving... .I'm not sure if she should be behind the wheel... .

[Forgetmenot]

My daugher drives very well.  But when she starts to ramp up you can see her driving a bit erratically.  It is dangerous.  If she gets her license it won't be because I signed off on it.  I hope her dad doesn't sign off.  I'll be teaching her to take a bus real soon.

[qcarolr]

UPDATE: This thread started in June 2012 with BPDDD27's 3rd application for SSI.  Her 2nd application was on it's final appeal in federal court. The judge there could not find enough evidence of a legal error, so it was denied. He included one short paragraph stating he could not evaluate the evidence on this appeal, only the legal aspects. If he could evaluate the evidence, he may have come to a different conclusion. (very unusual)

Yet, hope is here again!  DD had her appeal hearing on this final application on Oct 28, 2013 with the ALJ (administrative law judge).  He had come out of retirement to help with high case load. DD did a good job in her replies - she has been in a vulnerable, open place since her crash in June this year. Dh sat in hearing, i was excluded until called to testify. She is able to speak to her problems coping with life instead of being inconsistently in denial.

The judge has now called for a second hearing (very rare) to call in a medical expert to testify on DD's medical history record starting August 1992! She was six years old and an inpatient at psych hospital for several weeks in August 1992. Perhaps all the hours I spent filing this application online, and copying all the eval. reports over the years is paying off.

DD really really needs the support now of this SSI, She was released from 7 weeks in jail on Oct 24th after probation violations for harassment, no-contact and DWAI charges. She was in jail on harassment/dv in June and August this year. Sentenced to probatoin 9/5/13, then had exbf at our house on 9/10 - 9/11. The beginning of the 'big floods' in colorado.

So much fell through the cracks from that sentence 9/5. The judge personally pursued her acceptance into the dual-dx probation program - on the phone for 3 days prior to her hearing and sentencing. We are paying for her lodging in a monthly motel so she is not homeless. She cannot be in our home - too much trauma this year for gd8. Dd has invited me to bring her eval reports to her T in this program. To meet with her probation officer so she gets the accomadations that DD needs to be successful. She needs a coach to show up each day. Once she is there, she will participate. It is getting there. A one mile walk to the nearest bustop, having old bf staying with her at motel (has been lots of meth use in past with him)... .

The case coordinator and probation officer have asked me to stay out of her way as much as possible. Dh and I are willing to contribute to her housing, food when her food stamps run out each month, and unconditional love when I see her or talk to her on phone. I am seeing two T's for myself. I realize I cannot do this on my own. The validation, understanding my core values and the boundaries to protect those, protect gd, and protect the safety and peace for my home.

This letting go and radical acceptance that I am not the most powerful influence in DD's life is still a struggle daily. Old patterns so hard to replace with healthier patterns. I am so very grateful for all the knowledge and support from the awesome, caring parents on this board. Grateful for the support I have found in my community of faith - so many that accept what I share without judgement and encourage me on this hard journey. And realizing that DD finally has a community available for her needs - if she can continue to reach out to them asking for what she needs.

I started this when she was in jail this fall. Not visiting. Limiting her calls to once a day. Sending her care packages of high protein foods/snacks. And telling her ask for what she needs, ask for what she needs, ask for what she needs. I cannot help her - the no one will talk to me at the jail or in the court or her lawyer (I filed the complaint that sent her to jail this last time). And she did - she wrote her needs to the jail staff daily. Until they asked her to stop writing. She was assessed and supported by many - probation, PACE (dual-dx program), women transistion volunteers, taking classes (parenting, living skills, tried the GED but could not do the math part)... .She is trying hard to make probation work.

She says thank you to me every time she sees me or texts or talks to me. She is so grateful for a place to live and understands what we have gone through to finance this for her. And she understands that this is time limited. The program is searching for an apartment for her before the seasonal rates start at her motel in April.

So this is about more than just the SSI in some ways. The point here for me -- she can only succeed with her SSI application when she has become able to admit to her limitations and the accommodations that are needed. She has overcome much of her denial. At least for now, when it is so important.

Your prayers for success with her SSI and her continued participation in her PACE program are appreciated. So may prayers are being answered for everyone in my family.

qcr

[pessim-optimist]

Praying for that miracle to happen.  

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

[Rapt Reader]

Yet, hope is here again!  DD had her appeal hearing on this final application on Oct 28, 2013 with the ALJ (administrative law judge).  He had come out of retirement to help with high case load. DD did a good job in her replies - she has been in a vulnerable, open place since her crash in June this year. Dh sat in hearing, i was excluded until called to testify. She is able to speak to her problems coping with life instead of being inconsistently in denial.

The judge has now called for a second hearing (very rare) to call in a medical expert to testify on DD's medical history record starting August 1992! She was six years old and an inpatient at psych hospital for several weeks in August 1992. Perhaps all the hours I spent filing this application online, and copying all the eval. reports over the years is paying off.

qcarolr: This sounds so promising! It does seem like all your hard work--regarding your daughter and yourself!--is paying off at last. I do know how difficult it is to acquire SSI, even when the petitioner is deserving of it. You persevered, you dealt with the paperwork, phone calls, stress, etc. I'm so impressed! The signs look good at last... .Does she have a lawyer working on this as well? Just curious... .I know sometimes that is what it takes (but I don't know how much they charge, and I'm sure that there's nothing in the public arena to give one for free--right?).

You sound good. Your daughter's progress sounds good. The fact that they are allowing testimony about her mental health issues going way back to 1992 sounds good. The fact that she is finally admitting that she has a problem and needs help is VERY good! Maybe she's jumping that cognizant hurdle that will allow her to finally get to that better place... .Yes, qcarolr: my heartfelt and hearty prayers are with you and your family. I so hope that she gets the help she needs so much 

[qcarolr]

Update on hearing.

Judge questioned medical expert via phone. Judge asked questions, then Dd's lawyer asked questions. Truly, there would be no way to do this appeal without the good lawyer. They were all speaking a foreign language from the Social Security Regulations and case law.

They totally set aside DD's cognitive issues and non-verbal learning disability impacts on her ability to work. Not enough in the written record to document MEDICALLY those impacts. All the expert seemed to consider was the IQ testing done over time. He was evaluating if DD would meet standard as "retarded". What an out-dated way of looking at this area. Hmmm - regulations need to be updated!  The feel good of this is that DD feels redeemed that she is intelligent, though a slow processor. Maybe undoes some of the damage from being called stupid or retarded in her life by others, and taking this in as a belief about herself.

The two areas that the expert deemed as 'markedly' impacting her ability to work: attentional issues and social/emotional issues. Social/emotional is her marked inability to be in relationship with supervisors, co-workers or the public. This indeed shows a disabling condition to me and the lawyer. He traced the labels applied to DD from age 6 to the dx of BPD at age 22 as all leading up to the BPD as a young adult. He stated the signs of this were there as a child, though a personality dx would be inappropriate to apply at that early age. He included depression, anxiety, panic disorder, mood disorder. He also stated all the times she had been put on psych hold - sent to ER - released to home. He was looking for hospitalization to meet the regulatory requirements to show DD fits automatic approval under a statute. The ER's visits came up short on this. The lawyer tried to draw a conclusion from the vocational assessment DD did two years ago - but medical expert said he never even reads that section of record - out of his area of expertise.

Lawyer asked for approval under two different regulations. Focus in on DD's inability to do sustained employment based on the attentional issues. This is defined as a 40 hours a week job held over time. The other is the inability to be in relationship with anyone sustained over time.

We had coffee with lawyer after the hearing and she is caustiously hopeful. We have heard this before from the previous lawyer on DD's prior case. If the judge denies, she already has figured out her appeal. Or he may call yet another supplemental hearing to hear testimony from a vocational expert. The lawyer has seen this happen with this judge in other cases. Another comment she made was that our region does not hospitalize psych patients, and when they do it is for very short term acute stabalization care. The SSA standard looks for 3 hospitalization of at least 2 weeks duration  to fit that statutory qualification for approval. She said other parts of the country still do use inpatient treatment more tied to BFA? (baseline functional ability?) of 50 or less. DD almost always is at 50 or less even in just psych office visit notes. There are just not funds or beds to accomplish this inpatient treatment in our state. Community care is our local standared - whether is is working or not.

Don't they get the impact of all these delays on a real person's life? Lawyer commented they have to follow the formula in the law to make the decision. At least he seems to be thorough in his evaluation of DD's case file.

So another 30 day wait.  I will do a seperate thread on where DD is at in her daily life right now.

qcr

PS.  I am feeling very very angry both yesterday evening and today. Struggling to figure this out since DD is doing OK, and hearing went OK according to lawyer. Maybe I am feeling angst about the legal language that has limited DD's access to SSI for so many years. She just barely does not meet some statuatory definition to get qualified without delay because we did not put her into inpatient treatment after the 5 weeks at age 6. No money for private care. Not confident in what I heard about the publically funded residential facitlities. And some level of awareness of attachment issues for DD after the age 6 hospitalization that I did not want to make worse. Based on all the current research on attachment issues being important to later mental health disorders, maybe I was guided in an unseen way away from inpatient treatment. Cannot relive the past -- only live in today and hope for tomorrow.

[pessim-optimist]

Thank you for the update qcr,

I understand your angst - there has been hope, and also regulations that your dd did not fit into, and so far, there have been disappointing results in the past. This time, it can go well, but also, there can be a glitch in the system yet again excluding your dd - that's what you are probably worried about. I'd be worried too. That's normal. 

On the other hand, the decision hasn't happened yet. I would be also cautiously hopeful. This time it seems there are multiple people invested in your dd's case. They might drive it to a positive result... .