NOAH AOC

So I was wondering if anyone recieved disability for their child with albinism?  I heard people talking about it at the conference so I looked into it and had a phone interview for SSI today?  What do they look for and is it hard to get?  Any info would be great!!!

Hello, I'm Natalie. I have a 10 yr. old step-son, MiKah with OCA. Are you the mom from Atchison, KS that knew where Jamesport, MO was? If you are, MiKah was the boy that played with your daughter through the First Timer's Session on Thursday night. I never knew your name, but the pic of your daughter looked familiar.

We are in PA and we make too much money for my son to get SSI now, but he can when he is on his own. My son is able to get health insurance through the state because he was born with the disability and it does not consider income. Even though we have health ins through my husbands work we use the state insurance as a secondary insurance, as they cover glasses which our primary does not.

We make too much money to qualify as well.  One thing to remember:  Always apply when you are "at your lowest income".  For example, if you are a farmer (we live in a rural area) or are self-employed (and slow down in the winter) then that is the time to apply.  I think they look at the last 3 months of income so plan accordingly.  This will increase your chances of approval. 

 Also, you may be denied this month, but if anything changes (one person reduces hours, leaves a job etc..) you can always reapply.  I don't think there is a "limit" to how many times or when to apply.  If anything changes with your job, it is wise to revisit the issue.

Jo

My son Michael gets SSI. He has been getting it for a few years now. I applied when my ex and I were still together but between his disability and my job we made to much money. They said they never diputed the disability it is just that SSI is income based. When we split up I took every piece of arsenal I had. I saved every thing from school records all the way to eye appointment records, I always asked the dr. to send me a summery of each visit for IEPs and vi teachers anyway. I had a list of every dr of every type along with phone #s and addresses. My financial status changed so I qualified and I was approved within 2 months which is very speedy for Social Security because I was prepared when I went in.  If you have any more questions feel free to let me know because I have been doing this for 13 years between my son and my ex.

Nikki

Hi...

I think I remember you at the conference. Did u go with your sister and mom? I think I was in a couple sessions with you. Yur daughter looks familar, lol

It was easy getting SSI for Andy, but then we made too much money. After the income thing we were told about a special medicaid program for children who are legally blind and had a sibbling. They used all the income on Katie and no income on Andy so he could get it. . We also have insurance through my husband's job, but the medicaid as a secondary really helps with co-pays. That was tough to get, I had to keep turning everything in over and over again. I think it took nearly 8 months to get. But, that is Jersey for ya!

we do not qualify finacially...  And SSI say's we cannot have Medicaid as a secondary insurance, b/c we do not qualify for SSI.  Rediculous IMO.   I was planning to contact Medicaid this past week, BUT the TSO where Cash is getting his glasses does not even accept Medicaid, so it would have not done me any good.   Again, rediculous.  

Cheryl....

We do not have SSI medicaid, we have a special medicaid for children with disabilities. Some office called me after Andy's SSI stopped. She informed me he is eligible for medicaid. I told  them we have income. They said, no matter the income as long as there is another sibbling in the house he is elig. I asked why. She said, they used all of our income on Katie and leave Andy with no income and he is elig.  I think Kyle has the same thing. They also have medicaid as well. I would contact your local medicaid office and asked to speak to a supervisor. Maybe Texas has a similar program. They reg. people at the medicaid office had no clue about this program, I dealt with all supervisors. When medicaid is used as a secondary, i do not think it matters where you go. My son's office ped does not take medicaid, but they take SSI and this special medicaid.

thx Jill.... I will check on that

My son Andrew gets SSI. I just went to the local social security office and asked for an application.

My daughter Grace also has albinism, but not as bad as Andrew's. We recently applied her and she got denied (which doesn't suprise me, no nystagmus...). In her denial letter it said she's gotta be 20/200 to qualify. Also it said, "Her visual field must be restricted to 20 degrees or less."

If your child has these things, one or the other, I think, then go right ahead and apply. You can also go to their website, ssa.gov (i think, do a search if i'm wrong...thats social security administration) and it will give you an online application to be being,  but it will also tell you that you need to talk to someone at a local branch, but they should also give you a number to call.

Good luck!

Hey...Yeah I was there with my mom and sister...it was so much fun...I don't think Brylie will get the disability since her vision isn't really bad now...she does have nystagmus so we will see what they say...I figured it didn't hurt in trying...we drive 2 hours to the doctor and it can get a little pricey...What do you look like...I am trying to remember all the people I met!!!  There were too many of them but I am trying!!!