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Old 03-29-2012, 06:48 AM
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Bodie's Dad Bodie's Dad is offline
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Default Kicked off Medicaid/SSI please help

Those of you that know me or have read some of my posts know I have a son Bodie that is 19 months old & was born 2 months premature with Pierre Robin, Mitochondrial Degeneration Complex Type I. Since then he was trached & has a G-tube with multiple surgeries.

He was kicked off my health insurance when he was 6 months old for reaching the "maximum lifetime benefit" but thankfully he qualified for Medicaid because of his condition & he weighed less than a pound and a half at birth.

He also was considered disabled & received a small monthly disability check which we used to help with his medical expenses & care.

I received a letter yesterday informing me (with no Notice) that my son has been booted from Medicare & SSI Disability and I can't make heads nor tails of the Government BS reason in the letter.

I have ten whole days to resond to the letter (dated 3/26) and am contacting an attorney today.

Has anyone been through this and won? Looking for any advice & thanks in advance.
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Parent of Bodie 08/17/10, trach, g-tube, Pierre Robin Seq. Mitochondrial Complex type 1 http://bodie17.blogspot.com/
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Old 03-29-2012, 07:16 AM
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tbhartman tbhartman is offline
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When does that aspect of the healthcare law go into effect? it removes the lifetime max and ensures children can be on their parents insurance regardless. Have you applied for your state waiver.
Why'd they boot him off medicaid initially? That one doesn't seem right. (you can get on it if you're in the hospital for x days in a row), do you not qualify for it financially? Have you tried a waiver? Each area has a case manager you should be able to find and they can explain waiver, although not sure if mito is one of the applicable diagnoses..
Sorry about all this, it's so frustrating when all you want to do is care for your child.
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Mom to Micah- born 8/31/2009- Diagnosed with Cervical/Facial Lymphatic Malformation in utero. Trach/G-tube at 5 weeks.
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Old 03-29-2012, 07:49 AM
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Bodie's Dad Bodie's Dad is offline
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I will look into why he was booted. The letter said something about because his SSI/Disability has been terminated or suspended that is whay his Medicaid is being terminated.

The last letter I got from SSI had a 14 step process they use to figure my income (I kid not)... Rather than dividing my annual income by 12mo. Insanity.

For some reason they base his SSI on my income (a firefighter in Mississippi).. I make about $10/hour.

Thanks for the reply. I have had it with the constant BS that we get from SSI and Home Health care. All I want to do is go to work & be a good husband & father to my kids, is that so wrong?
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Parent of Bodie 08/17/10, trach, g-tube, Pierre Robin Seq. Mitochondrial Complex type 1 http://bodie17.blogspot.com/
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Old 03-29-2012, 08:23 AM
JandD JandD is offline
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Are you IAFF? When I was a FF/PM in Baltimore, there was a guy that had tons of trouble with Medicaid and SSI for his little girl. The union lawyer was able to help him and got another attorney to help with for no cost.

I'm sorry that you are going through this. It doesn't make sense and I really hope it's just a paperwork error.
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Jenna - Adoptive Mom of Dovid (traumatic brain injury, vent dependent) 12/09/2005 - 03/28/2011 and Foster Mom of Lil P (ASDx2, VSD, pulmonary stenosis, RTA, FTT).
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Old 03-29-2012, 10:09 AM
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EDodson EDodson is offline
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Oh SSI - it make no sense but unfortunately that's the way it works. SSI is 100% based on income and resources. When a child is in a hospital long term or is a premi it gives a little more flexibility. Once a child is home they take into account one car, income, bank accounts, etc. We minimized our resources as much as possible before reporting we were home from the hospital but still had $1800.00 too much. I also contacted several attorneys who said we could fight it but didnt think there was much we could do. Even if our resources fell within the limits they are free to run our socials any time they want. If they see that we went over in our bank accounts then they could come back and say we own them all those disability checks back. Fortunately our state offers the Katie Beckett Waiver so we applied for that to continue our medicaid. We dont get disability checks but it covers medical expenses (its secondary for us). I know it is ridiculous that the system doesn't cover children like our but that's the way it is. Check into your state waivers. Many have them and ours backpays all bills 3 months prior to initial application date. Good luck!
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Elizabeth - Mom to Brayden -9- Completelyhealthy. Rylan - Born 5/3/2011 with severe PPHN. Diagnosed with bilateral paralysis of the diaphragm with unknown cause. 100% vent dependent. Mitochondrial disease
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Old 03-29-2012, 10:58 AM
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at the moment i am between a rock and a hard place too. my son was getting SSI from his dad's disability, as well as his own. now we had to be audited because his dad did something wrong and we have to pay back 7000.00......like we have anything close to that..... and i am now worried that they will take Evan's SSDI check too.
I know excatly how you feel wanting to work and provide for your son. I work part time and it is all i have the strength left to do. I will be keeping you in my prayers.
as far as the law children with prexisiting conditions will not be covered until 2014...if the mandate passes.
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Old 03-29-2012, 12:23 PM
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kadiera kadiera is offline
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The parts that mean kids can't be kicked off their parents insurance and that keeps insurance from denying them for preexisting conditions is in effect already - can you see about adding Bodie back to your insurance?
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Janet, crunchy pagan automotive engineer mom to Alexander, born at 27 weeks, 1 lb 7 oz | vent/trach/gtube @ 5 months for BPD | g-tube free 7/11, trach free 8/11. Also mom to Bethany born @ 28 weeks, 2 lbs | gtube @ 5 months | trach/vent @ 6 months for BPD, bronchomalacia, trach free July 2014!
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Old 03-29-2012, 12:33 PM
principe principe is offline
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Here's my advice according to how I did things for Aldo. One thing I would do is appeal the SSI decision because just by the fact that Bodie has a trach he should be considered disabled. But yes, if your income is above their limit Bodie wouldn't qualify for SSI. Parents income is taken into account. I don't know if you have accounts at the bank that would put you above the income limit but about $10 an hour just for Bodie & you doesn't sound that your above the limit. Mom's income is taken into account also. Just make sure you don't have above $2000 monthly saved somewhere because that goes above the limit.

Now, the main thing I would do is go an appeal the Medicaid or apply for the medical waiver because there's no way in the world you can have the income for Bodie's health needs with $10 an hour. I'm pretty sure Bodie would qualify for Medicaid or medical waiver even if he doesn't qualify for SSI. One shouldn't have anything to do with the other. When Aldo was approved for SSI they switched his medical card to MediPlus. He used to have All Kids before getting SSI but at the end both are Medicaid but I believe All Kids is paid by the federal government and MediPlus by the state. For me it doesn't matter both were covering his trach health needs. The difference is for the state on what type of medical card they'll give Bodie but for Bodie or you it doesn't matter as long as he gets that medical card. So yes, apply only for Medicaid and not for SSI, if that's ok with you. He should qualify for some type of Medicaid without SSI. If not try the medical waiver but I really think he qualifies for Medicaid.
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Ana, mom to Aldo. Full term on 10/10/2010. Congenital Anterior Glottic Web & Subglottic Stenosis. 10/29/2010 Single stage LTP; web removed. Reconstruction surgery was a success but Aldo developed edema below the vocal chords and continued struggling to breath. Tracheostomy on 04/01/2011. Eats by mouth. High blood pressure resolved (it was probably due to hard breathing).
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Old 03-29-2012, 12:42 PM
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Default lifetime max

The lifetime maximums were supposed to go away as of September 23, 2010 under Obama's health care reform. There were some health plans that applied for a waiver. Have you got that information straight from the horses mouth at your employer? If your employer didn't get a waiver, then there is no lifetime cap, and your health insurance is denying coverage in violation of the law.

Unless the supreme court nixes everything, then I'll be in the same boat you are. James hit his lifetime limit when he was 13 days old, if the lifetime limit still applied.
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Jenny McLelland

Mom to Josie (born 12/18/09) (the healthy one) James (born 04/12/11). James has brachytelephalangic chondrodysplasia punctata (dwarfism with short stubby fingers and severe mid face hypoplasia, hence very small nasal passages, hence the trach), G-tube, cervical spine instability at C1/C2 pending skull to C7 spinal fusion.

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Old 03-29-2012, 01:16 PM
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Ainsley's Mom Ainsley's Mom is offline
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SSI is income based, period. Even if you no longer qualify for SSI or Medicaid due to being on SSI Bodie should be able to get onto your state waiver because of the trach so that he is getting medical coverage.

I agree that you should inquire whether he could be covered on your insurance plan based on the new laws. But you still should apply for the waiver. It will pick up the amounts not covered by your insurance.

We were on one program because Ainsley was in the hospital over a month. It lasted a year and then expired suddenly without much warning. We'd heard it was very difficult to get on the waiver, but our experience was that it happened quite fast once I actually made the calls to the right people. Good luck.
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SUSAN - Mom to Ainsley (age 7 - DOB 10/18/06) + Evie (age 13) and Adrian (age 11). Adorable and Trached since 11/06 (scarred vocal cords & OSA) capping with mixed success since 1/09, sagittal craniosynostosis (reconstructions 1/07 & 7/07), MicKey G-tube 06/07, Nissen 10/08, rare form of cerebellar hypoplasia, hip dysplasia (Surgery 11/07 & 4/10), ptosis(post-surgery). Decanned 7/21/14.

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