When a child turns 18, they then can apply for SSI benefits. You have to prove significant disabilities and of course Molly qualified. You fill out the stacks of paperwork, get the school to send in it's IEP notes and get the doctor to submit their paperwork deeming your child's disability.... and then you wait. And wait. And of course one never hears anything via email or phone or even the mail. That process took 6 months and then a lump sum of $ was deposited into Molly's account (that we had created for that purpose). Of course Brooke wasn't checking that account daily...or even weekly as no one ever gave us a heads up on when it would be deposited.
What we did know was that to keep her benefits, we always had to keep her account under $2000. We charged her room and board and she'd have a little extra each month for clothes and going to the movies, etc. Not sure anyone really can live off of $730 a month....but she can since she still lives with us.
Stay with me here as this is where the entire process got messed up. August 31, 2015 SSI deposited over $4000 for the back pay that they owed Molly since she turned 18 years old 6 months prior. We were told that we had 9 months to pay that down without getting penalized. We got a letter 6 months later (last February) telling us that Molly obviously didn't need her SSI benefits as she had too much money in her account. So they froze her account and said that she owed back over $3000 (I'm not using exact #'s here so don't do the math).
We were frantic. What are they talking about? We had 9 months to get her account under $2000. We filed an appeal like they said we could in the paperwork. We wanted a face to face sit down to go over this. Two months go by and we hear nothing. So starting last May and for the next 6 months, I go to the SSI office and wait for 3-4 hours with all the other frustrated patrons with sick coughing, crying children, no WIFI and NO food allowed. Sometimes I took Molly but waiting for that long is not her forte. I'm not very good at it either. And taking her away from her work to go sit doesn't seem fair and is penalizing her even more. Every time I'd finally get to the window with an actual person to talk to, they'd look up Molly's case and say "It's still under review" and I'd leave. And go back the next month having still never heard anything via the mail.
FINALLY in September, the person behind the glass started live chatting a lady in the back about our case. She was shocked that we had never received any correspondence about our appeal (and could see that no letter had ever been sent to us). She told me that was highly unusual and that here was a phone # to deal directly with a decision maker. What?! Are you serious!! Hallelujah! I called the lady from my car and within a week she had called back. She said "You are correct. Molly should not have been docked for those two months of coverage. But the other two months ARE your fault since her $630 life insurance policy is deemed cash in her account" (Hello...thanks for telling us that now!). "Even though there was under $2000 in the account those two months....that life insurance policy took it over the amount. If you pay back that $1460 then her account can get reactivated." Brooke then called this lady daily saying that we still wanted a face to face meeting to talk about all the back pay. She NEVER returned his call.
We felt like this was all crap...that Molly had been penalized for one year of services and all for their initial negligence and lack of correspondence. But we were up against the wall with no choices since we wanted her services to resume. What if we suddenly died and she didn't have us to support her financially, we NEEDED to get this started again? So I went back in and sat for 4 hours and read the book "Finding Flow" and tried to stay positive, and smile and use my nice voice when I finally got up to the window. Lo and behold once I handed over the check the helpful man behind the glass said that Molly would be getting back pay for all of those months!! I hadn't even asked him about that yet. All I needed to do was present bank statements from the last year showing that she didn't have $ in her account (which she didn't). I left, found another day when I had a 4 hour window (which is never), took in the bank statements, handed them over so that they were stamped and I KNEW that the SSI office had them....and we waited for another 2 weeks and just found out that TODAY $ was deposited into Molly's account!!
I actually feel like crying. This was a challenge in patience, persistence, anger, frustration and finally relief. We will never let her account have more than $200 now as we don't want to deal with this slow moving incompetence again. Tonight Molly treats for our favorite noodle bowl place and (maybe) champagne!!
