HI,

My name is Shari and my daughter is having difficulty with her SSI. We were told to file an appeal, which we did. But now I am wondering if there is anyone out there who has had a similar situation and if they had or know of anyone who is an Advocate for KLS to help represent us in the process. If she loses her medical coverage she can not afford to get her medication. If she doesn’t have her medication she is more likely to have more severe and more frequent episodes. We would like to prevent this from happening. If there is an Advocate for KLS out there please let us know.

Thanks and have a great day,
Shari

I was told I will have to apply for SSI.  I worry I will have trouble.  Any tips or advice to help me will be appreciated.

Im currently applying for ssi myself for KLS and other medical issues…i would highly recomend getting a lawyer,there is no charge upfront…they get paid only if u win your case!!goodluck and you can hit me up anytime if u have any questions!! :)

My problem being is how much for the lawyers?  I barely have enough money as it is.  Luckily to my benefit, we know the attorney general in CT pretty well and he is awesome…he gets the job done.  But my mom was telling me I won’t be making enough money for rent, and medical benefits are terrible with SSI…is this true???  My mom can sometimes exaggerate so I wanna hear the truth from those who have been there or are going through what I am.

I don’t understand SSI. You need a doc’s diagnosis of KLS to even begin to think about it, right? You can’t just say “these are my symptoms… You can see I have been out of work for a few years and have had numerous doctors/medications/tests…?” Also, as I understand it from the .gov site, to qualify for SSI you need to have worked a certain amount of years, no? Either that or be a dependant (IRS-wise) to someone who has worked enough “quarters” to qualify and if you do qualify for the latter, it doesn’t take away any $ from the person you’re dependent on…

Right now my dad is paying for my insurance (thank G-d!!!!) but he’s real anxious for me to get on whatever the SSI/disability insurance is but I’ve heard it’s awful. Something like 6 primary care visits a year and meds are mostly out of pocket… If you can wait I guess you’re better off applying for the newish gov’t insurance. It’s called Adult-somehing (I forget) but it’s free if you have low/no income and seems pretty decent but there’s a waiting list of at least 2 yrs….

BTW, in my former life - before KLS - I worked at a non-profit community mental health center and heard the docs and social workers (advocates) bemoaning the mental health disability SSI program (I can only assume the physical disability SSI system is just as bad if not worse). What I remember: it’s unheard of to get accepted the first time around. Everyone got rejected (attorneys prob make a diff if theyre good but i donthave that kind of $ so I don’t really kno) the first time regardless of how many professionals wrote to SSI/sent evals/etc. Once rejected you have to wait at least a year - it might have been 2 or 3 - before applying again. Most people who finally did get accepted were either those who did not leave the house - COULD NOT - or living in group homes and already recieving some sort of gov’t assistance - HUD or food stamps etc. The majority of the accepted had a long paper trail of hospitalizations, rehabilitation/outreach participation, criminal convictions or violent behavior. In other words: it seems that once you are in the system it is easier to stay in the system. Also those who had the type of diagnoses that could not be questioned or disputed; there is a difference between someone who is applying because they’re agoraphobic (too anxious to leave the house) or paranoid schizophrenic.

Also, there’s no way you can get welfare unless - maybe - if you have a bunch of young kids, are homeless, have a drug problem, etc. A good friend of mine was homeless last year and without any income and only qualified for $40/month in food stamps for 3 months. His sister went to the welfare office b/c she was about to be homeless and had two kids under the age of 5 (single mom) and had to go to her state representitive to get anything beyond a small food stamp ration and even he could not get her on the HUD list.

We’re f***‘d. If I cant get some kind of assistance not only will I be completely without credit, etc. in a couple of years but my mother is already having to push back her retirement date and we’re in the red. I’m afraid my KLS will cost her her home if I cant figure all this out…. Jamie

Children can receive SSI while in school to help pay for advocates and etc. That’s if your parent files that you are disable. You can go and try for SSI but you have to say that you are unable to get gainful employment around you KLS if you are old enough to work. The other post are correct. If you have the medical records. That is a doctors statement saying you have KLS .SSI attorney’s take cases on a no money up front . We have chosen not to collect on SSI to try and hope that they find a med that at least keeps the episodes in check .My son wishes to jion the army. If we SSI him he will never be able .