Applying For And Maintaining Social Security Disability

After  being diagnosed with Neurofibromatosis in 2007, I quickly had each of my 6 kids checked out and screened.  3 of the 6 of them were diagnosed shortly after.

Seeing what my older brother Mike went through, in regards to NF, we made the decision to apply for Social Security Disability.  It was a long- semi-drawn out process, but worth it, to make sure I was securing their health insurance.

All 3 were approved.  Rachel, even qualifying for a Make-A-Wish, due to diminishing vision.

We went a few years, with few NF related complications...Which is GREAT....But in the eyes of the government, it raised flags.

For those of you who understand the world of Neurofibromatosis...this is our life, right...?  Sometimes we are okay....Sometimes we aren't.  And sometimes....we simply get by.

We were sent to "specialists" to determine if Rachel still qualified as 'disabled'.  She had a simple and quick Psych Eval, which was given by some Government-sent 20 yr old..who spent 1/2 hour with Rachel and deemed her "cured of her disability".  

No seriously..that's basically what the letter said.

.CURED???  If only, right?!

Keep in mind, Rachel STILL has vision impairments....At the time of testing, her results were not better...Not worse.  Simply "STABLE"....

But again....Those who understand NF know that STABLE is temporary.  STABLE just means, we hold our breath, until the next scan...Until the next complication.

After the letter....I sent in the form to appeal...and got a fast response that the decision was "FINAL"...and to go through further appeals, I'd need a lawyer.  *sigh*

So, we let it go.

I went back to work, and we accepted the decision.

Fast forward to about 6 months ago...

Due for her 'every 6 month' MRI,  Rachel got some bad news.  An NF-related tumor had invaded her Corpus Callosum.  A tumor JUST like her big sisters.  Inoperable...and required Rachel's big sis, to go through 2 yrs of chemotherapy.

CURED?  Not by a long shot.

So now what...?  After meeting with some people who are knowledgeable with the application process for Social Security, we were encouraged to "reapply".

So we did...And now we hold our breath for the determination.

During this process...We have had to go through a few RE DETERMINATIONS for the other kids as well.  We are currently going through a re determination for Braden...My 19 yr old son...who has also remained stable.

He's had a Neuropsych evaluation....A medical exam...But ultimately...He could also be denied any further benefits, and be labeled as "cured"....

What do you do...?  It has been an exhausting process....But we continue to endure it, because I know that it is the best thing for the kids.

If you are afraid of the process of applying for disability, don't be.  Take a breath and just do it.

I am here to offer any support I can....We are all in this together after all.  

Don't Give Up!

THRIVE ON!

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.