Monday, April 16, 2012

Disability--Things You Should Know!

Two years ago, when I sat down to apply for disability for my oldest child, who had JUST been diagnosed with a rare NF tumor, I thought I was doing exactly what I needed to do to ensure her the health insurance that she so desperately needed...


She qualified...NO doubt about it...But I sure wish I knew the "ins and outs" of what it would mean, to have and KEEP disability. Which is why...TAdaaaaa, I am writing this blog post! 


Things to know BEFORE you apply for disability

The first thing you should realize when you are applying for disability for yourself or your child is the amount of time it takes to #1 Fill out the applications,  #2 Get your decision back from the state.

---It takes A LOT of time to fill the application out (if you are doing it correctly, that is)  An insider tip from a friend of mine who works in the determination dpt at the Social Security Office, in another state tells me that EVERY SINGLE LINE in the application MUST be filled out, even if the question does not apply to you (or your child) Putting "Not Applicable" in the blank spaces is better than leaving it blank.

---CONTACT NUMBERS for Doctors that you or your child have seen SPECIFICALLY related to your conditions is a MUST!  Make sure the numbers/addresses are CURRENT contact numbers!


It took me a total of about 3 hours to complete the process (that is 3 hours of FOCUSED time)--Which seems daunting, but ended up being very worth it...Submitting  a complete and accurate application will increase your chances for a "fast" approval.

This is NOT a process you want to rush through...If you have ANY medical records that pertain directly to the condition that is disabling you, make copies, and send them in with your application.

After you finish and send in your application...The wait can be really hard to deal with.  It took our family 3 months, before we heard ANYTHING from the Social Security Office.  (Which, from the many people I have spoken with is considered pretty good!)

Expect a LOT of questions, after the ball starts rolling.  When we finally got our call, I had to explain--in detail--what Neurofibromatosis was (even though, in my application, I went into great detail about this condition)  

I was asked almost every question that was on the application...And had to explain how the complications I listed, impaired my daughter's ability to live a normal life.  

***Be patient with this process***
It's very easy to become frustrated when trying to explain your situation to someone who doesn't get it....The person on the other end of the call is just trying to do their job...
Being patient and thorough will make things go a lot smoother.

After the first call, it took another 2 months before we heard anything...This felt like a lifetime!  

You may think that "nothing" is happening during this wait time...But rest assured, A LOT is happening!  This is when Social Security is checking all of the medical information and contacting the doctors.  You may receive a few phone calls during this time...Or you may be asked to go back to the doctor for further testing.

For my daughter....She received a full Neuro-Psych evaluation during this time.  

A neuropsychological evaluation (assessment) is a form of psychological testing that examines a child's mental abilities as they may be related to neurologic or other medical disorders, mental health difficulties, or problems at school. 
The primary focus of a neuropsychological evaluation is the child's cognitive functioning, considering abilities such as intelligence, language, visual-motor skills, memory, attention and organizational skills. Behavior and emotional factors are also considered as they affect the child's performance, but they are not the main focus of evaluation.
The primary goal of a neuropsychological evaluation is to understand a child's strengths and weaknesses, and with this knowledge to assist parents, physicians, and others working with the child at school and in other settings.
---This test was a crucial part in our approval process---

***Some Other Important 'NEED to KNOWS'!***
---Just like ANY Government program, Social Security Disability is income restricted.
What does THAT mean?
***This simply means that in order to "qualify", you have to meet certain income requirements.  This includes knowledge of assets such as Pensions, Life Insurance and strict reporting of earned income.  go to www.ssa.gov for more information
These "Assets" can be the determining factor in your case...Which really made angry.  I have a good friend, who has a child with NF1, just like Bailey.  This child is definitely more disabled and more limited than Bailey, but his family was DENIED disability, based on the fact, the Dad had a significant Life Insurance policy.
This family's assets, worked against them, which just seems so wrong!  The mom, even talked to me about the possibility of divorcing her husband and live in separate households, just to qualify their child for disability!  What's wrong with this world?!?
---For our family, the income limitations have been EXTREMELY difficult to live by, but the benefits in knowing that the health care is there has been worth it. 
***REPORTING CHANGES!!***
This is NOT optional!  You MUST report ANY changes to your income or household within 7 days.  Not doing so could result in the SS folks disqualifying you.


Also...Every family is different, every situation is unique, so it is important to ask questions if you want to know more about something...

I am happy to answer any questions that you may have about applying, qualifying and keeping Disability...Reply in the comments and I will answer as quickly as I can.

33 comments:

  1. This is very helpful! Kristy your family has been such a source of strength for all those who have NF. Your caring and positive attitude should be recognized and you should be give a medal of honor!

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    1. WOW...I don't know about a medal of honor, but THANK YOU! I find such joy, in helping to spread awareness about NF....And it's cool also, to make some friends along the way!

      XX

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    2. What is the main thing to mention when applying for disability? The pain?, your appearance?, severe scoliosis?

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  2. What a timely post. We just started thinking about applying for Joey to receive disability. We sent an e-mail last week and spoke with someone today. How's that for timely?!

    I'm wondering about doctors? Could we keep the same doctors? I spent a lot of time on putting together a really great team of doctors and don't want to lose any of them. We have what I consider to be the very best of the best in our area.

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    1. Rebecca--Yes by all means KEEP your current drs!! IF SS needs to send you any "special" drs, they will tell you...AND it will be AT THEIR expense!

      Having the same DRS who know your kiddo well, is actually a good thing! Your current DRS can even possibly help you apply for disability.

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    2. We have regular insurance, will they make us go on Medicade/care? I forget which one is for elderly and which one is for children :) I don't think many of Joey's doctors accept medicade/care.

      We just filled out the first of the forms today online. So confusing. I figured too much information isn't a bad thing.

      Kevin only makes about $35K per year...do you have any idea what the income restrictions are?

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    3. If you qualify for disability...medicaid can be used as a "2nd insurance"--to cover the cost that your regular ins does not pay...

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  3. Hi Kristi,
    I started this process for my son last fall and then decided it was too labor intensive and stopped. He turned 18 in August and is still recovering after more than a year from having his spine fused due to severe scoliosis. I thought he would be back to "normal" by now and am worried that I may need to hop back on this train to help him get some kind of income coming in. My husband and I can afford to support him for now but would like for him to have money of his own to spend until he can get a job someday. I don't know if this is something we should pursue or just wait and see if he can get on his feet first? We could wait for a while longer to see but I am just worried about his future ability to support himself entirely without some type of assistance. What would you do if your child were already an adult and not able to work or drive or go to school yet? The doctors say he should be OK it just takes time but no timeline has been given to us.

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    1. I would definitely start the application process. At least then, your son would be secured his own health insurance, and small income.
      NO DOCTORS can predict the course NF will take...I would get the ball rolling with disability....You could always back out of the application process, if you change your mind.

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    2. How are things like bank accounts, savings accounts, 529Plans, IRA's and the like counted?

      Sorry for so many questions.

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    3. "We do not deem some types of income and resources.

      Examples of income that we do not deem are Temporary Assistance for Needy Families; Department of Veterans Affairs' pension; general assistance; foster care payments for an ineligible child; and income used to make court-ordered support payments.

      Examples of resources that we do not deem are a home, one vehicle that is used for transportation and money in pension funds.

      For the types of income and resources that we do use in the deeming process, only a portion is deemed to the child."

      The amount in bank accnts is used to get a base line of your "assets" The amount does NOT automatically disqualify u, but it IS looked at.

      SSI will consider your IRA as a "financial resource"....Depending on amount...This COULD disqualify you for disability.

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  6. Hi Kristi,
    I started this process for my son last fall and then decided it was too labor intensive and stopped. He turned 18 in August and is still recovering after more than a year from having his spine fused due to severe scoliosis. I thought he would be back to "normal" by now and am worried that I may need to hop back on this train to help him get some kind of income coming in. My husband and I can afford to support him for now but would like for him to have money of his own to spend until he can get a job someday. I don't know if this is something we should pursue or just wait and see if he can get on his feet first? We could wait for a while longer to see but I am just worried about his future ability to support himself entirely without some type of assistance. What would you do if your child were already an adult and not able to work or drive or go to school yet? The doctors say he should be OK it just takes time but no timeline has been given to us.

    April 17, 2012 11:11 AM

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  7. Get a lawyer especially Bill Latour law offices which are nation wide. They helped me a person with nf win a case after two denials. My father had an I surname policy but was less than 20000 so maybe the person ms Hopkins mentioned above had one of those half a million policies. It is harder to win if you are a dependent child as they take exclusively your parents income into consideration but I won my ssi case as a 19 year old adult.

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    1. WaFord...It was a 250,000 dollar policy, so yes, that COULD be why. This person also owned their own home....Approval is based on a point system...Which seem RIDICULOUS to me...
      A lawyer is NOT always necessary...and I would be careful with SOME of the lawyers out there....They take a pretty big chunk of what u get...

      Getting disability is totally possible withOUT a lawyer...But thanks for the info WaFord

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  8. does having a part-time job, and having had full-time jobs in the past, disqualify me? i have a shoulder, facial, and vocal paralysis...

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    1. Disability IS income based....As long as you do not exceed the income limitations, you should be ok. Different states have different determining factors...Google your state and Disability for more information.

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  9. Hey! Thanks for the info its very helpful. But , my daugther has Nf1 as well but my husband who isn't her father will they take that into condersation as well.

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    1. If you live within the same household, they take EVERYONE who lives in the house into consideration. Meaning all the income of those in the house counts, for you, or against you

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  10. Hi Kristi

    Im a single mom of 3 and my youngest who is 7 has NF1 & ADHD. Im certain that I will qualfy icome wise. However, my daughter was denied, I appealed and was denied again last week. This has been a totally lengthy process, about 8 months total. My child has inattention issues, hyperactivity issues, she is and has always been below grade level. She receives speech services at school, had a Neuropsych evaluation done, which concluded her inability to process information without difficultly, especially in Math. Her attention spam and memory are really bad. This has been discussed and documented by doctors and school officials. She even has an IEP and receives Exceptional Childrens services.

    Sorry for theong post, but im fustrated that shewas denied again. I plan to appeal a 3rd time and wanted any suggestions you can offer. She has insurance, but I would like the income to assist w/ starting services for her, such as private tutorial, etc. Things her current Medicaid does not pay for. Also since I have been denied twice, will SS assist me with getting legal representation.




    representation? wasagain

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    1. Can u send me an email using kristi.hopkins@gmail.com

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  11. If i recieve SSI for NF1 & my daughter of 1 year was diagnosed with NF1, can she qualify for benefits?
    Does it hurt my benefits to have a daughter or would it increase?

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    1. She would have to go through an approval process. Having NF1 does not automatically mean you qualify for SSI.
      SSI is income based...ALL income would be taken into account to determine HER SSI amount.
      If your daughter does not have any NF issues, she would be denied. BUt if your daughter is having issues and you have a good medical documentation of those issues...It's a good chance she will also get SSI.
      Your SSI amount MAY go down just a little (maybe a few dollars) Each state is different ...The best thing to do is to call your SSI worker and ask them how you would be affected.

      best of Luck

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  12. The whole process of applying and getting approved with disability insurance sure wears a lot of people down. But thank you for posting this! I'm sure many who think that their case have nowhere to go will feel assured that there is hope indeed. Thank you!

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  13. I have custody of my 8 year old nephew who was dignosied with nf1. He has a tumor on his brain stem. He also has sereval tumors on his chest wall.. He has been dignoised with adhd and also has trouble with learning to read and write good.. Do you think he would qualify for ssi. Im not sure what they call disabling to the point of reciving ssi for a child. I know I would qualify as far as income. He is also in resource classes at school in all subjects and also in speech therapy.

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    1. Yes...Absolutely I think he would qualify- The school can help you with the application process....Including your nephews IEP will help ---as will medical records.
      You can e-mail me directly for assistance kristi.hopkins@gmail.com

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  14. I recieve SSI for my adult child because he has NF1 and has had difficulties since a young child. I also have it as well and have been experiencing some bad health issues myself....but am uninsured and really need to see a doctor should I apply as well?? It's just him and I in the world cuz I'm an only child and so is he, I need to make sure I'm atleast well in order to assist him. Please help!! Cuz, many people are unaware of what it's like to have NF1 including some doctor's.

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    1. YES. I recommend you apply. However...Unless you have a extensive medical record, proving you cannot work....SSI will deny you. I personally have been denied twice...even with hydrocephalus....even with a brain tumor. I did not get a lawyer tho....
      Getting a lawyer does not guarantee approval...But it does help your chances

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  15. I recieve SSI for my adult child because he has NF1 and has had difficulties since a young child. I also have it as well and have been experiencing some bad health issues myself....but am uninsured and really need to see a doctor should I apply as well?? It's just him and I in the world cuz I'm an only child and so is he, I need to make sure I'm atleast well in order to assist him. Please help!! Cuz, many people are unaware of what it's like to have NF1 including some doctor's.

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  16. i hVe a son that has nuerofibromotisis he is alittle behind in school. and his alittle slow.and when he talks he talks loud can i apply for disability for him

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  17. I have nf1. And i go to my hearing in the morning and when i was in school i got picked on until i stopped going to school in the 9th grade and now its sittin on the upper part of my spine im 29 and im still embarrassed about my left shoulder

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  18. I have nf1 and i have a hearing in the morning i be in so much pain its a large mass on my left shoulder blade that hangs over to my upper spine i dropped out of school in 9th grade because i couldn't understand the work plus all of the harassing and humiliating remarks ppl where makin it was difficult to complete school being uncomfortable

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