hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
I have an appointment at the Social Securtity Office next week. We're going to apply to have my daughter declared disabled. Hopefully this will only be needed temporarily.
I am shocked to realize my daughter's problems have been going on for 10 months. It all started with a tick bite & rash last spring. She doesn't remember the exact time, but says it was a few months before school was out.
She had surgery mid-May, and about 2 weeks later began having about 50 seizure-like events per week. These have been called a movement disorder because they seem to be triggered by activity, but they don't know if they're actually seizures, or not. Her LLMD calls them non-epileptic seizures.
I have subscribed to the Disinissues discussion group recommended by Betty.
I don't know how I'd cope without LymeNet. I appreciate you all!
I hope I don't forget anything important.
Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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bettyg
Unregistered
posted
nancy, happy to read that your got signed up with DISINISSUES web site!
did they say much to you what was needed for your daughter? you are the only one i personally know applying for your daughter; sorry, but i forgot her age?
NANCY, HAVE YOU PRINTED OUT THIS LISTING BELOW....ALL 14 AREAS? you'll find it helpful.
are you planning on preparing all the paperwork yourself or hire a lawyer you are denied 1st step since everyone is denied unless they have submitted such detailed info to DDS they CAN'T DENY!!!
do you buy your daughter's medical records wherever you dr? clinic? hospital?
102.01 Category of Impairments, Special Sense Organs
102.02 Loss of Visual Acuity
102.03 Contraction of the visual field in the better eye
102.4 Loss of visual efficiency
102.08 Hearing Impairments
nancy, get out the detailed instructions from my newbie links/advise i sent you earlier on SSDI process. you could start your case now and continue to add to it.
remember, if you are typing anything, SAVE IT OFTEN! BACK IT UP AT SAME TIME so if something is list, you don't have to start from scratch ok!! good luck to you both.
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Betty, my daughter is 14. Do you know if there is a disability code for pain? or fibromyalgia?
My daughter hasn't found anything that alleviates or controls her pain. I think the next step is either a stonger pain patch or morphine.
Narcotics don't alleviate her pain; they just make her sleepy and not care if she's in pain. She doesn't learn well while on narcotics.
Also, she has a seizure-like movement disorder. Athetosis was a word I saw on one of the disability pages. The ER neurologist we first saw said she had paroxysmal kinesogenic choreathetosis...a sudden, movement-induced weird movement.
All of her brain tests came back normal...she had an EEG, CT of head, MRI of brain, and a spect scan of brain.
The pediatric neurologist that ordered the EEG and MRI just labeled her problem as a hereditary movement disorder.
Only the neuropsych test showed some deficits. Her auditory memory was lower than expected and she had problems attention and concentration, and problems with cognitive speed and attention.
I haven't received the written report on the neuropsych test, just the verbal report.
I plan to get this stuff together. I hope I won't need an attorney. I always TRY to remember to get a copy of our my medical records when I'm at the doctor's office. I learned here that it was a very important to keep your own records.
The lady I spoke with said they'd send off the disability paperwork and we would hear something in 3-4 months. Is this an accurate time frame???
What is disability anyway? ...just a declaration, or a way to get some sort of government benefits? Does any benefit come directly out of my SS account or my husband's SS account?
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
quote:Originally posted by hshbmom: Betty, my daughter is 14. Do you know if there is a disability code for pain? or fibromyalgia?
My daughter hasn't found anything that alleviates or controls her pain. I think the next step is either a stonger pain patch or morphine.
Narcotics don't alleviate her pain; they just make her sleepy and not care if she's in pain. She doesn't learn well while on narcotics.
Also, she has a seizure-like movement disorder. Athetosis was a word I saw on one of the disability pages. The ER neurologist we first saw said she had paroxysmal kinesogenic choreathetosis...a sudden, movement-induced weird movement.
All of her brain tests came back normal...she had an EEG, CT of head, MRI of brain, and a spect scan of brain.
The pediatric neurologist that ordered the EEG and MRI just labeled her problem as a hereditary movement disorder.
Only the neuropsych test showed some deficits. Her auditory memory was lower than expected and she had problems attention and concentration, and problems with cognitive speed and attention.
I haven't received the written report on the neuropsych test, just the verbal report.
I plan to get this stuff together. I hope I won't need an attorney. I always TRY to remember to get a copy of our my medical records when I'm at the doctor's office. I learned here that it was a very important to keep your own records.
The lady I spoke with said they'd send off the disability paperwork and we would hear something in 3-4 months. Is this an accurate time frame???
What is disability anyway? ...just a declaration, or a way to get some sort of government benefits? Does any benefit come directly out of my SS account or my husband's SS account?
Since she is only 14, she would qualify for SSI disability only and all family income is taken into account to determine eligibility for benefits. Your family income will have to be pretty low for her to qualify. If she does not have insurance, then Medicaid would come into play as well. But, again, income cutoffs are pretty low.
If she continues to be disabled and is not eligible now, then when she is turning 17, start looking into adult benefits. There are 2 separate sets of "listings", one for children and one for adults.
If you have any specific questions, feel free to ask. I do this for a living.
Posts: 2275 | From NC | Registered: Oct 2000
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Connie, thanks for the information. Please send me a pm.
We are a family of 8 on a single income. There's a good possibility we'd qualify.
We have BCBS for health insurance.
What is SSI? ...and SSI disability specifically? How can this help her?
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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bettyg
Unregistered
posted
nancy, i'm going to answer your SSI and SSDI differences question this way, please look at this site explaining these in user-friendly terms ok! as you read one, you'll think of something more and others will answer those questions.
3-4 months to hear something; can be up to 6+ months; so the sooner you start the better.
connie offered to give you some advise, please take her up on it since she's doing this for a living now.
With her advise, and mine sent you earlier, you should be able to do the PAPERWORK ALONE saying you money to go towards your daughter's care and feeding the other kids/yourselves!
just ask questions, we'll help you to the best of our knowledge!
DISINISSUES MODERATOR, SARAH SHAPIRO, has extreme knowledge. you have just to cut to the chase on that board; no fuzzies/cuddling like we do here!
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Just my two cents here. Perhaps you can fill out the paperwork, but my cognitive problems are so bad I know I could not have gotten my SSDI without my attorney from the beginning.
I found the amount I had to pay him was minimal compared to what I got from it all. Even when I think I have done a good job I can look at something later and discover it is full of errors.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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