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WORST MORNING EVER!

Posted by on Dec. 4, 2014 at 11:31 AM
  • 15 Replies

I applied for supplemental security income for my son, Dylan. The older he gets, the more he needs and our insurance is an asshole AND we have a huge deductible. We pay about $400 a month out of pocket for his OT.

I spent weeks gathering and copying all the documents I needed. TWO days compiling them into a 3 inch binder with tabs separating and labeling. I thought if I had everything they asked for and it was neat then maybe it would be quicker. I went to the social security office for my appointment, denied within 10 minutes. I started crying right there in front of the guy and haven't stopped yet. I guess I'm naive. I thought since he had autism, we'd get approved. I thought based on our income we'd just get less. I thought if income was that big a deal they would have given me the limit when I made the damn appointment.

The guy probably thought I was an idiot for crying, because based on our income, we're middle class. We shouldn't have a problem. It's that deductible, which starts over in January, and student loans and OT, and speech. We haven't gotten his autism waiver yet. A few months ago we were over 100 on the list.

I feel a little better after venting, just stupid.

by on Dec. 4, 2014 at 11:31 AM
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Replies (1-10):
Momof4AEMW
by Platinum Member on Dec. 4, 2014 at 11:40 AM

Yes, income is a huge impact on SSI, but thankfully not on waivers.  Hang in there!!  If he's on the list, at least you know help is coming.  The Medicaid should pick up all his therapies after you get on the waiver.  Did they tell you about how long it takes to get through 100 kids?

emarin77
by Gold Member on Dec. 4, 2014 at 12:02 PM

Not all states have waivers though.  So check with your state.

Quoting Momof4AEMW:

Yes, income is a huge impact on SSI, but thankfully not on waivers.  Hang in there!!  If he's on the list, at least you know help is coming.  The Medicaid should pick up all his therapies after you get on the waiver.  Did they tell you about how long it takes to get through 100 kids?


Momof4AEMW
by Platinum Member on Dec. 4, 2014 at 12:12 PM

Our state does not have an autism waiver, but it sounded like she was already on the wait list for theirs.  We have other waivers here my kids were already on that also picked up their ASD therapy after dx.  It's too bad there is not more consistency across states in their services and programs.

Quoting emarin77:

Not all states have waivers though.  So check with your state.

Quoting Momof4AEMW:

Yes, income is a huge impact on SSI, but thankfully not on waivers.  Hang in there!!  If he's on the list, at least you know help is coming.  The Medicaid should pick up all his therapies after you get on the waiver.  Did they tell you about how long it takes to get through 100 kids?



dawncs
by Dawn on Dec. 4, 2014 at 12:39 PM

I hate how the government can be in getting real help with a disability at times and especially on the push for our help on private insurance things. Have you tried looking at www.autismspeaks.org for ideas and updates legislation wise?

Dawn
Asperger Syndrome Published Author
Asperger Syndrome diagnosed May 1997 as an adult
Inherited genetic Metabolic Syndrome diagnosed August 2014 (maternal side)
My Author Page

emarin77
by Gold Member on Dec. 4, 2014 at 12:41 PM

It might be due to the state's ability to have that funding available for them to care for children with disabilities.

Quoting Momof4AEMW:

Our state does not have an autism waiver, but it sounded like she was already on the wait list for theirs.  We have other waivers here my kids were already on that also picked up their ASD therapy after dx.  It's too bad there is not more consistency across states in their services and programs.

Quoting emarin77:

Not all states have waivers though.  So check with your state.

Quoting Momof4AEMW:

Yes, income is a huge impact on SSI, but thankfully not on waivers.  Hang in there!!  If he's on the list, at least you know help is coming.  The Medicaid should pick up all his therapies after you get on the waiver.  Did they tell you about how long it takes to get through 100 kids?



ineedcoffeemom
by Brittaney on Dec. 4, 2014 at 12:49 PM

Don't feel stupid for crying. I've cried countless times over the fact that my husband makes too much money to qualify for anything, yet he doesn't make near enough to cover any of the services out of pocket. His employer insurance is Self-funded ..... which means even though we live in a state where they are required to cover autism, his insurance doesn't because self-funded falls through a loophole.

The decision we made that works for our family best right now is buying my daughter private insurance through the health care marketplace. It's going to cost, but it won't nearly cost the amount the therapies would outright.

krnelson04
by Member on Dec. 4, 2014 at 12:51 PM
They didn't say. I'm going to call again soon though. I'll ask then.

Quoting Momof4AEMW:

Yes, income is a huge impact on SSI, but thankfully not on waivers.  Hang in there!!  If he's on the list, at least you know help is coming.  The Medicaid should pick up all his therapies after you get on the waiver.  Did they tell you about how long it takes to get through 100 kids?

krnelson04
by Member on Dec. 4, 2014 at 12:57 PM
I haven't checked. I'm actually not even sure what our insurance will even cover, we got it about six months ago when my husbands company got sold and our deductible is ridiculous. So I haven't found out since we've been paying full price.

Quoting dawncs:

I hate how the government can be in getting real help with a disability at times and especially on the push for our help on private insurance things. Have you tried looking at www.autismspeaks.org for ideas and updates legislation wise?

MamaLauri
by Silver Member on Dec. 4, 2014 at 1:54 PM

So sorry to hear. You need to vent. 

SamMom912
by Platinum Member on Dec. 4, 2014 at 3:57 PM

I hear you... I SOOOO hear you... It sucks when it's so hard to get the help you NEED for your child, just to be told NO. It sucks that you've worked hard to provide a nice life for your family and your extra (ha, I know the word extra in the sentance is a joke) money (is there such a thing as extra money?) all goes to help your child who still isn't getting the help he needs AND you don't see an end in sight. 

I'm there with you my friend, vent away, I get it. 


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