SSI Disability Advice for parents of kids with birth defects / epilepsy (U.S.)

Patricia - posted on 06/24/2009 ( 14 moms have responded )

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Hi everyone...we found this out the hard way and I thought I'd pass it on. My son was born with multiple developmental delays (speech, walking, coordination, etc.) and epilepsy. We never had anyone suggest that we file for Social Security Disability...not Easter Seals, not any of his doctors, not his therapists, not his social workers, NO ONE. We never thought to file for disability because he was a child and we were supporting him, of course...we weren't even sure if his disabilities would affect him for life. When he was 23 and losing his health insurance through us and we realized he would never hold down a job, we filed for SSI and were turned down (multiple times)...we were told that if he was born with a disability, we should have applied then and he would have received it FOR LIFE. Because we didn't, his disabilities are not considered "severe" enough and we can't "prove" that he just doesn't want to work. It's been a nightmare. If your children have disabilities...file for SSI now, or at least BEFORE they are 21 and it's too late.

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Lisa - posted on 11/06/2009

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Hi my daughter will turn in about 10 months. We applied for SSI when she was 6 but were denied because of income. I am worried hearing the stories that you still have to fight them even at 18. Is there anyone that didn't have any problems. I definatly agree that there are too many people getting it that should not be!

Stefanie - posted on 09/14/2009

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Quoting Lisa:

My twins were born with Cerebral Palsy and have had many delays. Thank the Lord they are defying all of the doctors theories about walking and talking; however, they will need therapy for life!! I have applied and been turned down, and have appealed. The process is long, and I continue to fight the system. However, I am working in conjunction with my doctors and therapists and have had to stay on the workers at the Office of Disability Determination to continually get the up to date information from EACH doctor. They are lazy sometimes and will only get one report and file their decision. It can be very frustrating. I have to stay home with the girls right now, and income is tight; however, with it based on income when I go back to work I may not get money, but the insurance is guaranteed for life. Once I am gone, or they are on their own, they will be able to qualify for money based on their own financial situation. I am pushing for the insurance because their bills now are over the 1 million dollar mark and climbing!! Medicaid is covering this under SSI until the appeals are done, but I am scared that if they are denied I will not be able to handle their bills. If anyone has any suggestions on what else to try, I would greatly appreciate it! I am so sorry for your frustrations Patricia, as I know it isn't easy watching your sun struggle. Have you tried hiring a lawyer and getting letters of people that have watched him go through his disabilites or doctors that have treated him. I know disability attorneys will take on the case and get paid if they win, maybe this is an alternative for you? Good luck and my prayers are with you!!!


What state do you live in? I live in Texas and we have a program called MDCP (medically dependent childrens program). I am not sure if this is just in Texas but with this program your child can get Medicaid based on their income not yours. You get more than just Medicaid with this program too. Of course there is a 2 year waiting list but there are ways around that.

Sharla - posted on 07/09/2009

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The SSI division is very strict on income limits, and that's something that I don't understand at all... I had no problem getting SSI for my son, but for some parents whose children are severely disabled, it's not fair the way they treat them.

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14 Comments

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Ashley - posted on 11/11/2009

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hi. i applied for my 3 y/o who was born with a rare heart defect. i applied for him in april of this year, and were about as broke as they come. he was still denied for the ssi program. some of the things with his heart. it has a hole in it, one of his main arteries that comes off the right side,comes off the left. he has 3 valves on the left side, instead of 2. he could go into cardiac arrest at any time, if the valve doesnt work right, his heart could back flow and bust..but they said that he wasnt severly disabled..u tell me!

Leslie - posted on 07/10/2009

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Hi I am new to this group and I am not sure if I am doing this right.. But my daughter has Infantile spasms a rare form of epilepsy....We did apply for SSI and we were denied because I/we make too much.. She will be disabled for the rest of her life..

Sharla - posted on 07/09/2009

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Beckie, I believe they are talking about the states. I have a 5 month old and at 2 weeks of age, the neurologist diagnosed him with CP & Epilepsy. No one in the hospital told me about SSI, I learned of this from talking to several other parents at the Ronald McDonald house. (My son was 2 months premature & had a brain injury at his birth.)

Francine - posted on 07/05/2009

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hi

my son now 22 months has a severe brain disability, seizures etc and receives OT PT SPEECH< SPECIAL INSTRUCTION. he cannot talk or walk, feed himself, drink from a cup etc. he is placed at 6-8 months old developmentally and i applied for SSI and was told as a NYC teacher i make too much to qualify and that he needs to apply himself at 18 when he is considered "legal"

Beckie - posted on 06/30/2009

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is this in canada or the states??? i am trying to get some insurance/ funding/ anythign to help out with my little guy???

Laura - posted on 06/30/2009

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We are going through the same thing with my 20 year old. We have been trying since she was 18, but the process is slow and they are not very understanding. She has no money and is about to lose her insurance, it should not be like this.

Lisa - posted on 06/27/2009

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Heather Norwood, do you qualify for the insurance (Medicaid) part of SSI disability? We got the denial letter for the financial help, which is no big deal at this point; however, they did qualify us for the medical insurance. It says in the letter it doesn't go by income but by their disability. On the medicaid website, it shows it is no longer DCF medicaid, but SSI medicaid. It is based solely on their disability, I hope this helps!

Patricia - posted on 06/27/2009

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I know it's frustrating, but you have to keep applying and keep applying...the average time from first application to court date is FOUR YEARS...sad but true. I know, as parents, our biggest fear is what will happen when we're gone.

Patricia - posted on 06/27/2009

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You just have to keep on trying...the average wait from first application to court date is FOUR YEARS!! Unbelieveable...and I know some people who have it that shouldn't...they just knew how to work the system. I'm sure, as parents, our biggest fear is what will happen when we're gone...

Lisa - posted on 06/24/2009

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My twins were born with Cerebral Palsy and have had many delays. Thank the Lord they are defying all of the doctors theories about walking and talking; however, they will need therapy for life!! I have applied and been turned down, and have appealed. The process is long, and I continue to fight the system. However, I am working in conjunction with my doctors and therapists and have had to stay on the workers at the Office of Disability Determination to continually get the up to date information from EACH doctor. They are lazy sometimes and will only get one report and file their decision. It can be very frustrating. I have to stay home with the girls right now, and income is tight; however, with it based on income when I go back to work I may not get money, but the insurance is guaranteed for life. Once I am gone, or they are on their own, they will be able to qualify for money based on their own financial situation. I am pushing for the insurance because their bills now are over the 1 million dollar mark and climbing!! Medicaid is covering this under SSI until the appeals are done, but I am scared that if they are denied I will not be able to handle their bills. If anyone has any suggestions on what else to try, I would greatly appreciate it! I am so sorry for your frustrations Patricia, as I know it isn't easy watching your sun struggle. Have you tried hiring a lawyer and getting letters of people that have watched him go through his disabilites or doctors that have treated him. I know disability attorneys will take on the case and get paid if they win, maybe this is an alternative for you? Good luck and my prayers are with you!!!

Heather - posted on 06/24/2009

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We've looked into that for our son,. but for some absurd reason we don't qualify based on our income, even though he is severely disabled. It's so frustrating- and it's not like the ppl in the social security office are all that helpful!

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