Dysautonomia (Autonomic Dysfunction) Community
please help...need answers
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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please help...need answers

i have dysautonomia , p.o.t.s. & i am now going to a cardoligist for low heart rate,bloodpressure,oxygen,& potassium. i have been seeing a neurologist for years. i am 18 years old and i have been passing out since i was 8 months old.i. i cant get a job or my license's . i am on all kids insurance and it ends in august. and have no way of getting insurance due to no income. i have two babies. and i was just wondering if people with this sickness can get on social security or something. i have so many doctors appointments and with my health i cant afford not to go but after august i wont be able to afford to go. so any advice would be wonderful. please & thank you
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560501_tn?1383616340
    So sorry that you are having such a hard time of it.  Do you have any family around to help you out in anyway?
Someone can correct me if I am wrong but I THINK that you could possibly get Social Security disability under your parents SS #'s.....You may also try looking into
SSI which is an small Income from Social Security that you may qualify for as well as your children.

   AGAIN, I am no specialist on SSD nor SSI I am just going from memory (and thats a scary thought...LOL) Also, Can you apply for some state assistance, or Food stamps?  There is also Government Housing you could check in to.

   Thoughts and prayers are w/ you. Now I am not sure if you know or not but there is actually a forum here on Med Help specifically for Dysautonomia/ Autonomic Dysfunction. They have a wealth of info on their forum also.

  

Take Care,
~Tonya
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560501_tn?1383616340
DUH!  We are on that forum (community) !
Please forgive my crazy brain as it likes to go its own way
at times...  :)

~Tonya
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612876_tn?1355518095
You can definitely apply for SSI, Medicaid, and food stamps for both yourself and your dependents.  There are also other benefits that you may qualify for but the names of those vary by state, but if you inquire at your Job and Family Services Office, they can help you apply for everything for which you qualify.  There is assistance for paying your energy (heating) bills, usually assistance to pay for a basic landline phone, low-income housing assistance, cash assistance (to pay for non-food stuff like soap and toilet paper that food stamps doesn't cover) ... just make sure to tell them you want to apply for EVERYTHING you might possibly get.  As for SSDI:  

"Social Security Disability Insurance (SSDI) benefits for adults disabled since childhood

The SSDI program pays benefits to adults who have a disability that began before they became 22 years old. We consider this SSDI benefit as a “child’s” benefit because it is
paid on a parent’s Social Security earnings record.
For a disabled adult to become entitled to this “child” benefit, one of his or her parents:

    * Must be receiving Social Security retirement or disability benefits; or
    * Must have died and have worked long enough under Social Security.

These benefits also are payable to an adult who received dependents benefits on a parent’s Social Security earnings record prior to age 18, if he or she is disabled at age 18. We make the disability decision using the disability rules for adults.


SSDI disabled adult “child” benefits continue as long as the individual remains disabled. Your child does not need to have worked to get these benefits.
How we decide if your “child” is disabled for SSDI benefits

If your child is age 18 or older, we will evaluate his or her disability the same way we would evaluate the disability for any adult. We send the application to the Disability Determination Services in your state that makes the disability decision for us. For detailed information about how we evaluate disability for adults, ask for Disability Benefits (SSA Publication No. 05-10029)."

http://www.socialsecurity.gov/pubs/10026.html#older-children

So, basically, if either (or both) of your parents worked and paid into social security and is now disabled, retired, or deceased, you can collect SSDI based on their benefits (providing that you can get through the hoops of being declared disabled yourself by the social security administration).  You can contact social security through their website above, or call their 1-800 number which is also on their website to get more information.  

For the basic question as to whether people with dysautonomia ever get on disability, the short answer is yes; the long answer is that it's different for every person because we all have such variable cases, especially considering most of us have different constellations of other diagnoses to go along with whatever our "main" diagnosis is.  Some people appeal over and over again and keep getting rejected, whilst others get on SSDI their very first time applying.
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Avatar_f_tn
thank you so much for your info...i have another app. tomorrow so i am gonna ask my dr to help me before my insurance runs out.i have been passing out from 8 months old & now my daughter is
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967168_tn?1343732745
with your case I would suggest getting an attny for your ssdi claim - you can read lots of info on this at http://www.allsup.com/  Allsup is who I am going to go with if my ssdi claim is denied - still waiting after 3 months

Any attny can only charge a certain % up to a capped amount, so if you get any back disability it doesnt mean they get more in fees.  Plus, you don't pay anything up front - they will take their fees out of the amount you are owed from SSDI.

I have no clue what yours would be but it may be worth calling and talking to them after reading the info on their site and at least finding out your options.
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