difficult child 1 denied SSI and need suggestions

[TeDo]

Got the letter today that difficult child 1 has been denied for SSI. "The medical records do not show marked and severe functional limitations." This is a kid that won't remember to eat unless I make him (only 70 lbs at the age of 14), can't be left home unsupervised (don't get me started), doesn't think to shower unless I tell him to, can't cook anything because he forgets he's cooking (have the burn holes & ruined appliances to prove it), ...........

How do I get them to see that without me home, this kid would be off his medications and eventually die of starvation because he has VERY marked functional limitations, not to mention the legal and school issues we've had? The only reason he's not doing worse is because I am home 24/7 to make sure he gets everything he needs. A lot of this stuff probably isn't in his medical records since the only GOOD professionals we've found are the neuropsychologist he will be seeing every two years for a re-evaluation and an Occupational Therapist (OT) that no longer works with kids. The others were/are idiots and I'm sure their notes are very minimal but they are all we have access to.

Any ideas on how to get this decision turned around or should I not even bother to appeal it?

 

[InsaneCdn]

The Occupational Therapist (OT) and neuropsychologist should still be able to help you on this one. Being able to prove how severely disabled he WAS at the time of last treatment, and their opinions as to prognosis, do have weight. Ideally... one of them would be able to see him for a "status update" appointment, which would bring their opinion into "current" status.

 

[DammitJanet]

You need to be able to prove he isnt progressing on the same rate as his peers. That is what they look at. You need to have him see doctor's religiously enough that they can say that he isnt anywhere close to a local boy of his age. Mom simply wont do it all the time. You can report this stuff but you need a doctor to back you up.

 

[Wiped Out]

Be sure to appeal. I was told once it can take several times.

 

[SearchingForRainbows]

I agree with everything the others have said. I know several people who had to appeal more than once before they were able to get their difficult children SSI. Make sure to keep copies of everything you send. Hang in there - It can be a frustrating process! SFR

 

[BusynMember]

My son AND me got SSDI. Let me tell you what I was told.

They NEVER ok it the first time. Or the second. Or the third. It goes to a different person each time and not until the FOURTH try does it go to the RIGHT person. They are hoping you will quit trying. Do not quit trying. Apply again. Keep applying. Make sure you attach all the medical records you have. And if they turn you down the fourth time, then you can get a lawyer, but this is the way SSDI is done. It is the same for everyone, kids or adults. KEEP AT IT. He will eventually be accepted, but you have to stay the course.
Also certain key words help. "Autistic spectrum disorder" "cognitive delays not otherwise specified" "bipolar disorder"...they help a lot more than "ADHD" "ODD" "Conduct Disorder", "Sensory Integration Disorder" etc. What is his legal diagnosis. by the way, a cognitive delay can be many things. It does not have to mean he has a low IQ. On the Asperger's front, it is better if he is diagnosed with autistic spectrum disorder (my neuropsychologist knew to do that to son) although he is very high functioning. They need to think it is a lifelong disorder.

I would not appeal it. I would re-apply. Wait for the fourth time to do anything.

 

[confuzzled]

http://www.ssa.gov/disability/professionals/bluebook/12.00-MentalDisorders-Adult.htm#12_10

carefully read it, know the qualifications and buzzwords and base your appeal around it.

its not necessarily true that everyone is turned down the first time, but plenty of people are, and the appeals process is there for a reason. take full advantage of it and include every last piece of documentation you can, including school evaluations and his IEP if he has one. and of course every report ever generated by a doctor, therapist, whomever.

but dont give up--its a long process.

 

[amazeofgrace]

is there a state case worker involved with his treatment, sadly this is when I was able to get benefits rolling for difficult child...

 

[TerryJ2]

Wow. That's all I can say.

 

[TeDo]

We don't have such a thing as a state caseworker in Minnesota. They are all county and ours closed his case because the few services offered in our county are for lower functioning kids. They basically offer PCA's (I'm a stay at home mom so no need there), social skills services (counselor takes the kids 1:1 (no peer interaction) to do fun things and difficult child 1 won't go with the ONLY one here anymore because the counselor is convinced difficult child 1 is basically just ODD despite professionals saying otherwise), and horse therapy twice a year that she won't keep the case open for.

He's too high functioning for the services offered through our caseworker but not high functioning enough to be able to attend regular public school (don't get me started) or be left alone unsupervised. It really stinks being "inbetween".

 

[TeDo]

I read the whole rejection again and they did not request information from the county case manager, the respite center he was in, the schools he was basically kicked out of, or the social skills counselor difficult child 1 fired. Those are the ones that would show how he does in a non-medical setting and would have the most helpful information to back up what I submitted about his everyday living.

Based the information they did request and received they said:

The evidence shows:
- With medication, his ADHD does not severely limit his ability to function independently and appropriately. (When I am there to remind him to even take it)
- He is able to understand and remember basic instructions (On what planet!!!) and do normal activities.
- He is able to concentrate on tasks and work steadily at an adequate pace. (I would love for whoever said this to come live with us or go to school with him!)
- He interacts adequately with adults (only ones he knows WELL) and other children.
- In combination, his impairments are not severe enough to be disabling.(This kid is going to need help all his life)

 

[InsaneCdn]

What information DID they receive?
For next round, can you get your hands on other info? IEP records, school correspondence, etc.?
Did they just gloss over the Aspie diagnosis? That's way bigger than ADHD.

There are formal assessments of level-of-care for kids... ones where you sit down for an interview with a caseworker and they ask a hundred (seems like it at least) formal questions that then go into a scoring system. What comes out is a medically-accepted definition of the degree of care this person needs. They look at stuff I wouldn't have thought of, like number of specialist appointments, how many things get broken/damaged (whether by accident or on purpose), behaviours, attitudes, etc. If you could get a formal screening, that would also back you up.

 

[TeDo]

IC, they got records from psychiatrist that we no longer go to because she thought all difficult child 1 needed was counseling. Yea, that's gonna work great with Autism Spectrum Disorders (ASD) and severe anxiety and PTSD trust issues. They also got reports from Occupational Therapist (OT) that he cooperated with because she built a good rapport with him and she listened to him and did FUN stuff. They got reports from the online school where they only have academic stuff but no accommodations because I provide them informally. The only somewhat helpful report they "might" have gotten is from his 3 day psychiatric hospital stay where he was in the children's unit instead of the adolescent unit because of his emotional functioning. Apparently that wasn't enough. Those are the only reports they even requested according to their list.

I have never heard of the assessment you described. I doubt he'd cooperate with them to answer any questions like he didn't cooperate with the neuropsychologist unless I was in the room and even that was a struggle for him.

 

[InsaneCdn]

TeDo, I'll see if I can look up what that one was called. HE doesn't do it, YOU do. It's a parent interview assessment, but very structured. Takes your feedback and quantifies it. I was wary at first - we had to do it as part of a funding request - but in going through the process, I see why the agency wants it, and it was definitely fair.

 

[DammitJanet]

Tedo...dont worry about that letter...APPEAL! Dont reapply. Please listen to me. Please. I beg of you. I got a letter something like that back in 03 and cried my eyes out and decided not to appeal it because it said that:

Janet can do xyz in a normal manner. The kicker was when they said that I handled stress in appropriate manners the same way as most adults of my age. I was absolutely stunned at that statement. I honestly didnt know many people who cut themselves or who kicked holes into their walls. How many people do you know that have thrown entire everything on the kitchen counters out of the windows? But evidently that was handling stress appropriately.

I decided to throw in the towel and try to get a job. I worked my tail off. I finally got an interview at a place that would have actually been perfect for me because the hours were in my peak times for being awake and pretty on my good game. I would be working from 3 to 10. Pretty darned good for me and it was as a call taker at night. I would have loved it.

Well, I obviously was completely honest with these people about my health issues and the fact that I took medication including pain medication which at that time was only lorcet and I took my psychiatric medications which included ambien and one benzo, I cant remember which one now. I brought in copies of my prescriptions from my pharmacy as well as a letter from my doctor's saying that I was under treatment and these were medically prescribed. They wouldnt look at either letter. I was also told they were going to do a back ground check on me only going back 7 years. They did one on me going back 15 years showing that I bounced a check that many years ago. I had already been offered the job. Been given my hours. Gone through orientation. They claimed it was my background check. I know it was the drug screening because they refused to allow me to give them those doctors notes.

So anyway....I reapplied. It took me years. I got a lawyer. we went to a hearing which is what you go to after you have been denied twice. When I got before the judge he was ticked off as all get out. The doctor from SS himself had advised to approve me back in 2003 but they denied me anyway. The Judge asked me if I would accept his apology and be okay with my benefits going back to that day? YEP!!

 

[TeDo]

Thanks ladies. I will be filling out the appeal form today and getting it in the mail. I guess I wasn't expecting this because my soc sec disability was approved on the first try.

 

[crazymama30]

Tedo, my son has SSI and was approved on the first time (but he was in an Residential Treatment Center (RTC) at the time). I think what nailed it for us, was when they called on the phone and asked questions about his daily functioning? I answered as if he was having a bad day. I was also very detailed with what doctors/therapies he had seen/been to, what medication he had tried and with what result. I would appeal.

 

[TeDo]

CM, they did not call me at all. That would probably have made a huge difference. I am hoping the appeal will allow me to get the missing information to them as well as provide my own additional information about his daily functioning.

 

[flutterby]

It took me 2 years and a court hearing to get my SSDI approved. I gave them copies of medical records that I had, but they didn't contact any of my doctors for records - just denied my claim. Once you've been denied, you can hire a lawyer. I wouldn't do the appeal yourself - get a lawyer. They take a percentage of retro-pay once he is approved and are limited to a certain amount.

 

[crazymama30]

Tedo, that is odd. I know that with difficult child and also with S2BX I was called by someone and interviewed. S2bx is still waiting to hear the results of the hearing. difficult child was medically granted his very quickly, the financial piece of it took a bit longer. I would definately appeal it, especially if you are sure you would meet the income requirements for SSI.