Disability denied my disabled son benefits!!

Sabrina - posted on 11/12/2009 ( 114 moms have responded )

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Disability denied my disabled son benefits!! Why is this even happening?? Apparently you have to have an income no greater than $938.00 a month to qualify. Are you kidding me!! This money is not for us it's for him. To able to get what he needs when he needs it.

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Cassandra - posted on 01/03/2010

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I was working full time and pulling in over $1300 a month and my son was approved for SSI almost immediately, but then I am a single parent with three kids, so that wasn't considered alot. My son they approved with no problem, he was in and out of hospitals and different partial programs and hasn't attended reg ed school since 2nd grade. My daughter, however, they refused to make a decision for over a year. I don't understand their reasoning sometimes but I was told, that they occasionally refuse people the first time just to try to weed people out. I do know that finances are a factor, since they say they consider SSI a supplemental income. Good luck.

Patricia - posted on 01/03/2010

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we make to much for SS-Di or disability, what we did was go for a state waiver. with that the state determines the child disabled without income. therefor we get the medicaid and the state pays our insurance premiums as well

Tara - posted on 01/03/2010

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I applied for it for my son four months after he was born, that was in 2007. He just got it in 2009, we had to get a lawyer. Disability kept telling me he was fine and that there was nothing wrong with him. He has Cerebral Palsy, hearing impaired. It is a shame that families that don't need it get but when there are kids out there that actually do need it, it takes forever for them to get it. I really hope things turn around for you and wish you the best of luck. The best advice I can give is to be patient and keep fighting!

JoAnne - posted on 01/03/2010

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SSI is not the answer to everything. If you get nowhere with SSI take your denial letter to your county Dept of Health and Human Services. Through them you can apply for Medicaid. There are many programs out there that are not advertised by the government. There is the Katie Beckett waiver, there is DDD(Division of developmental disabilities), and many times local hospitals or treatment facilities have services at discounted rates. Look into Shriners hospitals, local clubs like the Elk's,or Variety clubs,Easter Seals, UCP, MD orMS or brain injury assoc. Do your homework, look into what disability your child has and google anything and everything you can think of. And when all else fails try contacting your local legislators. You voted them into office and they are there to assist you in whatever it is you need. they have pull when it comes to government agencies, and may even know of ones that others dont know about. Never sit back and wait for things to be given to you, you must fight, and never accept no's the first time. Hope this helps you all in some way or another.

Jennifer - posted on 01/01/2010

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I live in ak but I know there is a insurance called TEFRA and It is based on the just the childs income I would ask someone who knows about disabilities to help or maybe google it or if you have a case worker for you son maybe they would help you out!!!

Therese - posted on 12/31/2009

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Where do you live? That is horrible. The government is so worried about their wages,their pension , they really dont care about the constituents that pay taxes to pay for their wages. If you are in the States , I dont know what the law is there but in Canada, i have two grown adults, one son has a head injury, that was a painful and long process.. the income they generate from the pension is not enough, they need to get roommates, I still provide for them. It is a worry constantly so I know where you are coming from. Best of luck to you

Deb - posted on 12/31/2009

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When we moved to Delaware 5 years ago a friend of mine helped me with our medicaid application. She told me to NOT put my husband's income.; Medicaid is not for my husband but for my son. My son does NOT have any income so that is what we put and we were accepted. If you have your son in your will inheriting money you must put his inheritance into a trust so he can still have his benefits. Contact an attorney about your will and what you should do about a trust for him. We are fortunate to have a wonderful amount of friends with children with disability in our area that have helped us and guided us.

Joline - posted on 12/31/2009

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A lawyer is definately what you need! My son is bi-polar, adhd with a behavior disorder. Here in Nebraska they didn't even look into our income until after he was approved so they could figure out what his checks should be. He had to see a specialist and go through some mental testing and was approved on the spot. Then we began with the financial aspects. With disability you are almost always gaurenteed to be denied the first time. Once you have secured a lawyer, "THEY" LISTEN much better to the situation.

[deleted account]

Forget SSI! My 8dd has CP and Hydrocephalus. She has her own secondary coverage to our family insurance under the Medicaid Waiver. Only her income is looked at. It covers all her copays and special needs music and gymnastics classes. I dont get a check every month--but what it covers is worth the process!!I get reimbursed for mileage I submit for her doctor appts and out of school therapy. She is classified with the school district as multiple disabilites. I think that may have helped too. Her coordinator told me dont even bother with SSI until she's 18yrs. With all the headaches people talk about --I can see why.

call your local DSS Dept of Social Services and see about it in your county--USA.

Christina - posted on 12/31/2009

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Quoting Wendy:

Hi everyone ! When i appiyed for my daughter I was told that I would be denied at first but to fight it. I did and after going to see there doctor and everything my daughter got ssi and was payed from the day I first applied!! my advice is to keep fighting you will get it. Also check and see if your state has Childrens special health services. usually through a wic office we have that here in michigan and it is a insurance through the state that covers everything that you insurance may not cover that is related to the dissabilty this includes copays and special eguipment. My son is diabetic and this covers all his testing supplies and my daughter is hearing impaired and this cover hearing aids and batterys hope this info helps


Wendy, thank you for this information.  I live in CA but will be checking into if we have anything like Childrens Special Health Services.  My son had Medi-cal, however all medical benefits have been "trimmed and cut" here in our beautiful sunny state.  It covers basic needs but not much more.  Maybe there is some Federal help that is available to help some of you out there ..... I have been reading some of your stories and my heart really goes out to you all. 

Christina - posted on 12/31/2009

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Quoting Alicia:

If any of you posting live in CA you will have a hard time with benefits if you make any money at all basically. The way that we got around that was by getting a waiver of income form signed by our case worker with the Regional Center. If there are any of you moms out there that aren't in CA that are having a hard time check with all and any of your service providers and see what they are able to do for you. It took us a few years before I heard from a mother of a little girl at my son's therapy center that it was possible for us to get medical coverage for our son despite our income. It doesn't mean that the service is good or quick, but you can usually fight to get what you need without having to sacrifice everything that you have worked hard for. We weren't able to get SSI, but there is a program in CA that will pay you to be the caretaker of your disabled child once they are 5 (or you can fight them and try and it get it earlier..I can't remember the name of the program, but your case worker should be able to help). Hope this helps! I think it's obsurd that we have to fight to get the things that our children need, but I'm sure it is because there are some bad seeds out there ruining it for the rest of us. Good luck to everyone out there fighting the fight. It only makes us stronger, right?!!!


Alicia, I really appreciate your comments..... I do live in CA and have just requested an application to re-open my son's case with our locat Regional Center.  My 6 year old has MDS (Mosaic Down Synd.) and was just approved for SSI in November.  We did not apply earlier because we were also told that we would not qualify because of income.  However, my husband got laid off in mid-October and so we applied.  It is not much but it is some that will help with what he needs.  I will be checking with my Regional Center case worker, when I get one, to inquire about the waiver of income form.  Thank you very much!



 

Krista - posted on 12/30/2009

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I dont understand this myself and i am just starting to really comprehend the insanity of our government . For our son who was diagnosed at an early age that he was handicapped it wasnt really a problem but we also didnt have an income at the time.however this is where it changes my son is almost 18 now so this was a long time ago when we applied. Now just about anyone can get disablility benefits it seems except those that actually need it. my own mother recently got it due to hurting her knee on her stair case and after surgery and recovery . Now she gets disability and it puzzles me to this day cause she is at almost retirement age in a few months as well as my father who clearly made alot of money working in a mill for 40 some years.

I wish i could say something to help the only thing i know is you have to push and be mean and do anything and everything you can to get what you need for your child after all it is the child who is going to suffer if we as parents dont persue the government to start changing their rules and policies in order to help the handicapped . good luck to you .

Wendy - posted on 12/30/2009

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Hi everyone ! When i appiyed for my daughter I was told that I would be denied at first but to fight it. I did and after going to see there doctor and everything my daughter got ssi and was payed from the day I first applied!! my advice is to keep fighting you will get it. Also check and see if your state has Childrens special health services. usually through a wic office we have that here in michigan and it is a insurance through the state that covers everything that you insurance may not cover that is related to the dissabilty this includes copays and special eguipment. My son is diabetic and this covers all his testing supplies and my daughter is hearing impaired and this cover hearing aids and batterys hope this info helps

Cindy - posted on 12/28/2009

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What state are you in? Many times they deny people the first time because many will not respond to the denial. Therefore they get away with not paying anything. FILE the appeal! I live in Pennsylvania and both of my sons are on disability. Yes your income plays a part in the formula. But they do not count 100% of it. They alot deductions for parents living expenses and also an exemption for other minor children living in the home. My sons have never worked. Their benefits were based off my contributions to social security. They may during the paper trail ask you to take your child to one of their doctors. Keep the appointment! They are required to make the visit with a doctor in your area, contracted with them, to do the evals. Keep everything they send you! This is important and it does pile up quickly. Just in case you do need a lawyer. The process does take months, so have patience. I know it's frustrating.

Roxie - posted on 12/27/2009

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Quoting Sabrina:

Disability denied my disabled son benefits!!

Disability denied my disabled son benefits!! Why is this even happening?? Apparently you have to have an income no greater than $938.00 a month to qualify. Are you kidding me!! This money is not for us it's for him. To able to get what he needs when he needs it.



My son was born has cerebral palsy, seizures, asthma, and sickle cell.  I had him Jan 2005 and I signed up for the SSI benefits and was immediately approved. We did an interview over the phone and the next month he was approved.  He didnt get the full benefit because I was working but now that Im not able to he gets the full benefit. By him being my first child I didnt know anything about disability until I had talked to a social worker at the hospital and she was able to guide me in the right direction.  He also gets his Medicaid through the disability office.  I think every child with a disability should get SSI benefits whether the disability is long term or short term.  My son is in a program that helps him get equipment and services that he needs.  So far he has gotten a wheelchair, a bath chair, a standing frame, splints for his hands, braces for his feet, and a carseat that looks like a recliner. Whenever he goes into  the hospital he has a worker for his seizure and sickle cell that I call and let them kno that he is there just in case his Medicaid doesnt pay the whole bill then that program will pay for it.  I hope that your child gets the benefits that he deserves. May God bless you and your family.

Barbara - posted on 12/13/2009

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My son was approved first time around but I had over two years of documentation and providers, daycares he'd been kicked out of, speech therapists, EIP evaluations. They dont care about anything that is NOT written down or documented by a third party. Now I applied for my daughter who has been baker acted twice at 7 yrs old, I wonder what they will say about that.

In order for them to consider it a true disability it has to be A) life threatening B) a condition which will take more than a year to improve and affects the childs ability to function on a day to day basis.

For my kids without medications and sometimes even with functioning moment to moment is a task, forget day to day.

Laura - posted on 12/12/2009

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Quoting Melanie:

I just tried calling for my daughter today, and they pretty much told me the same thing. The woman kept telling me "It's for families in need", ummm Hello!? You can't even have two cars.


You can have two cars.  They do not count the first one but the second one they do count based on blue book value.  And yes because of the $5,000 resource limit ($3,000 for a couple and $2,000 for your child) the 2nd car will have to be a junker.  Mine is only worth $900.00.

Laura - posted on 12/12/2009

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Quoting Melanie:

The same thing is happening to my daughter but they never said anything about our income they told me it's because her disability isn't severe enough. She has cerebal palsy and mental retardation. Yet they don't want to help us and there is special equipment that she really could use but unfortunately we can't afford.


In your case, I would contact Binder & Binder.  They can help you prove the disability.  The way it works is if you do get approved and Social Security has to pay you back retroactively Binder & Binder will get 25% of the back pay.  Call them.  I did.  They were nice and helpful but for me it wasn't going to help because Social Security was not questioning my son's disability, they were questioning our income.

Laura - posted on 12/12/2009

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Keep pursuing it. We had to fight for 13 1/2 months and we finally were approved and just received our first monthly payment on Dec. 1st. I had to go through the appeals process. Just keep appealing it. The system is basically set up to deny benefits because they want to see if they can keep from paying you. They won't say that - but in my opinion its the truth. We went all the way up to the point of requesting an Administrative Judge Review (Dec. 2008). Then we had to wait until Sept. 2009 for them to finally approve it. Also, they will continually ask you for documentation that you have already given to them. Don't fight with them about it just give it to them again. Document all of your phone calls/correspondence etc. Call them every single week if you have to. I even went as far as going to Legal Aid. Then all of a sudden Social Security contacted me and wanted me to come and and presto we were approved. I know it is so frustrating and discouraging. Don't give up.

Stacey - posted on 12/07/2009

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Reading your stories makes me want to cry and makes me scared of what's to come. My daughter was approved for disability while she was still in the NICU and the hospital did all the paperwork for us, we just had to sign some things. I stay home with her and her dad is out of work at the moment...but even on unemployment he makes more than 938.00 a month, so this shocks me to see all the issues you all are having. I know assets are the killer! If you can keep them out of your name, do it!!
This has me scared to death of what will come when he does find employment. Here's hoping and praying all you guys get the coverage for your children you so desperatly need!

[deleted account]

that is absolutely terrible! what country are you in? my son has cerebal palsy and epilepsy,and we get a set allowance for him each fortnight.

Deborah - posted on 12/05/2009

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My daughter was denied as well in 2002. She was on disability for 6 months then was taken off because my husband made too much money. For the past 8 years he drove an 18 wheeler and he changed jobs which caused him to take a huge paycut. He now works for KMMG in West Point, GA and he is paid by the hour at $14.90 and his gross pay is 1192 every 2 weeks which averages out to 30992 a year. My daughter now get her disability at 676 a month. I am a stay at home mom and if I went to work she would probably loose it. They do go buy your income, but, if you have a mortgage payment, along with your regular monthly bills and your car payment, car insurance, like we do, they are suppose to subtract that amount from your gross pay and if there is no extra cash left over, as in our case, then they can't count the income so then your child will qualify. Sometimes if both parents work and it causes your income to be too much, one of you may have to leave your job just to be able to qualify and get the benefits for your child. Just keep trying.

Deborah - posted on 12/05/2009

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You need to hire a lawyer. Keep pushing and try other avenues as well. If you still have your denial letter contact your local Easter Seals as they now have a program that you may qualify for and they will help with all medical bills and whatever supplies your child needs. But in order to get this you have to have been denied by Medicaid first.

STEPHANIE - posted on 12/04/2009

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NEVER GIVE UP .................THATS EXACTLY WHAT THEY WANT YOU TO DO. I FIRST APPLIED FOR BENEFITS IN 1996

STEPHANIE - posted on 12/04/2009

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IM GOING THROUGH THE APPEAL PROCESS RIGHT NOW. WE WENT IN FRONT OF THE JUDGE THIS WEEK. I FEEL GOOD ABOUT THE CASE NOW BECAUSE IM NOT WORKING AND HE JUST HAD SURGERY. I HAVE BEEN DENIED TWICE IN THE PAST, PROBABLY BECAUSE I WAS WORKING. MAYBE THIS TIME WE WILL GET OUR BLESSING. THE JUDGE SAID HE DIDN'T NEED A MED EXPERT ,ALL HE WANTED WAS THE MEDICAL RECORDS. I DON'T THINK HE WOULD ASK FOR THE MED RECORDS IF HE WASN'T GOING TO APPROVE IT. MY LAWYER HAS 30 DAYS TO GET THE RECORDS IN THE FILE AND THEN HE WILL MAKE HIS DECISION. I FEEL LIKE THERE IS GOING TO BE A GOOD OUTCOME

Kobie - posted on 12/04/2009

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hey,
it doesnt matter how much u earn they find a way to deny you. Im a single mum with two kids. I cant get anything for my youngest cause he is able to feed & dress himself!!! so he doesnt fit in their little box of kids with needs. Never mind the 6 hour return trips to the childrens hospital i have to make weekly, the time i have to take off work to do this, then centrelink calls threatening to cut my payment beacause i fell short of working the hours im meant to so that i qualify for single parent pension. I could honestly go on forever. The whole system needs to have some MAJOR changes cause as everyone knows our kids are our future and its them missing out!!

Eileen - posted on 12/03/2009

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It took me about a yr to get benefits for my daughter that has spina bifida. I think its normal practice that they deny everyone at least once. They said the same thing as they did to Melanie that her sb would go away. What world are they living in. Just keeping pushing. Get all the doctors and therapists involved.

Vidia - posted on 12/03/2009

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Quoting Jennifer :

i am currently re applying for ssi for my son i was denied because i missed the phone appointment that was supposed ly scheduled fotr the day before my paperwork told me it was scheduled for so now i have to redo it all over again it may be that he isn't sever enough in their books but i think he is i also have 2 other children with special needs though still not sure of the extent of their problems yet my oldest has bee in early interventions program and then got an IEP when he started school he is severly hearing impaired requires hearing aids both ears has speech problems and since he can't hear he has learning issues too he needs a one on one aid in school t ot ect... recently he has been diagnosed with an extreemly rare chromosome 18 disorder only he and his father so far are know to science to have it one gene he is missing out of the 15 deleted genes is responsible for the brain seperating into two halves they are going to schedule a mri to determine f he has a milder case of this disorder i am still tryng to get his so called tics diagnosed as a seziure disorder i am sure it is a form of siziure but so far drs are afraid to labe it as such he could really use in home therapy to enhance what he gets in school i was up until the first of dec on medicaid (all of the fam) but i just started a new job that pays well unfortunately with a family of 5 to support 4 of wich 3 kids and dad have medical issues i'm not sure i will only barely be able to scrape by even with the good pay we now have really good insurance through work but it only covers a certain amount for my sons hearing aids every 3 yrs ok so a kid with 2 hearing aids isn't going to go through $600 of coverage in 3 yrs? yeah right he is still growing and goes through earmolds like candy plus he has all kinds of specialists and the copays are a bit steep for us esp for the specialists then i still have the other 2 kids to worry about we are jsut starting the diagnosis process with them the drs think they too have the same chromosme 18 disorder and most likely will have very simallar problems as the oldest child my question is does anyone think it would be worth it to try to re apply or should i just give up i am worried i will get turned down because of income and severity issue as i said before it may not be as severs as some but i have 3 special kids to care for not just one and that takes a lot of money to see all the individule specialists and now theripists they each need and i don't think the pay is going to cover it and still put food on the table i'm not sure i like being in the middle where you no longer qualify for help from dss but don't make enough to survive


Jennifer : never give up...Your child need you to be his voice and his ears ,to give him the chance for treatment .Don't think about the negative problems that you are going to find but to the good that you can do for your child .No one is going to care for them like you ...Get a Case manager and a Social Worker to help you to find all the treatments and drs. and help that you need



  But never give up ,your children need you and with faith and God on your side..you are the only one that can do that for them



    Keep your faith and God Belss you and your family ......Vidia

Vidia - posted on 12/03/2009

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Quoting Kelli:

My son is disabled as well. Earlier this year he was granted SSI, but when our income went up slightly, they cancelled it & we had to pay back the $120 they paid him & cancelled his Medicaic. I wasn't concerned about the $40 per month, I WAS concerned about his medical benefits because he had an upcoming open heart surgery. I raised heck with them, but it did not do any good. I think it is obsurd!


Hi Kelli: when my son was younger we did have that problem,do you have a social worker or a case manager for him ? You have to get on them about it because with him having upcoming surgeries and other health problem that he need treatment all the time you have to have a case manager to represent you and him. Call the Medicaic or Medical Assistance office,don't just wait for them and get in touch with the SSI offica and get a hearing .



 Remember one thing "you are your child's voice " don't wait .My son is 23 now but we have to fight for everything because they will tell me that my husband make to much ,he is the only one working because I don't have anyone to stay with him and then we have a secound child ,she don't have no problem but she need my attention and care to.And they will said "Well you can maybe get a job"yes then who is going to take care of a child with Celebral Palsy ,that don't talk to much and that need a lot of help "



 We as mothers have to let our voices heard by some of this people that don't have an idea of what is to see your child with special needs and not having and not enought to to give them everything they need.... .Years ago I was quite and afraid of saying anything because I feel like they knew it all ,and one of my son's doctors said to my one day " Mrs. Gallion I'm not God,and anyone in those medical offices are eighter,you know your child better than anyone and no one have the rigth to treat you like they know better than you and their is nothing else but what they tell you ,that there is no other way ....... You are his voice and if you have to scream SO DO IT"........... Now 20 years later no one tell me that I'm just mom .I'm more than that ,I'm Michael's voice and no one know him better than me or understand him better than me .



 Kelli,I hope you find the help that you need for your little angel and I pray to God to give  you strengh to deal with all this people that you are going to find in your way to help your child .



   God Bless you and your family ...........Vidia

Jennifer - posted on 12/02/2009

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i am currently re applying for ssi for my son i was denied because i missed the phone appointment that was supposed ly scheduled fotr the day before my paperwork told me it was scheduled for so now i have to redo it all over again it may be that he isn't sever enough in their books but i think he is i also have 2 other children with special needs though still not sure of the extent of their problems yet my oldest has bee in early interventions program and then got an IEP when he started school he is severly hearing impaired requires hearing aids both ears has speech problems and since he can't hear he has learning issues too he needs a one on one aid in school t ot ect... recently he has been diagnosed with an extreemly rare chromosome 18 disorder only he and his father so far are know to science to have it one gene he is missing out of the 15 deleted genes is responsible for the brain seperating into two halves they are going to schedule a mri to determine f he has a milder case of this disorder i am still tryng to get his so called tics diagnosed as a seziure disorder i am sure it is a form of siziure but so far drs are afraid to labe it as such he could really use in home therapy to enhance what he gets in school i was up until the first of dec on medicaid (all of the fam) but i just started a new job that pays well unfortunately with a family of 5 to support 4 of wich 3 kids and dad have medical issues i'm not sure i will only barely be able to scrape by even with the good pay we now have really good insurance through work but it only covers a certain amount for my sons hearing aids every 3 yrs ok so a kid with 2 hearing aids isn't going to go through $600 of coverage in 3 yrs? yeah right he is still growing and goes through earmolds like candy plus he has all kinds of specialists and the copays are a bit steep for us esp for the specialists then i still have the other 2 kids to worry about we are jsut starting the diagnosis process with them the drs think they too have the same chromosme 18 disorder and most likely will have very simallar problems as the oldest child my question is does anyone think it would be worth it to try to re apply or should i just give up i am worried i will get turned down because of income and severity issue as i said before it may not be as severs as some but i have 3 special kids to care for not just one and that takes a lot of money to see all the individule specialists and now theripists they each need and i don't think the pay is going to cover it and still put food on the table i'm not sure i like being in the middle where you no longer qualify for help from dss but don't make enough to survive

Mary - posted on 12/02/2009

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i would call a disablitity lawyer they should be able to help and fight for your child we almost had to do it for my son and as soon as they heard lawyer come into it they changed their minds real quick if your still having problems with the disablitie ppl i would really recomend tryin to get a lawyer hope this helps everybody that needs it

Michelle - posted on 12/01/2009

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I hear all of your pain and know what it is like. I have an 11 year old boy that at the age of 2 started showing signs of problems and it has taken 9 long years, many doctors, specialist, shrinks and finally a pshychologist that actually took all the reports and test and went through them before he met my son. My son has been diagnoses with Pervasive Dysfunctional Disorder, a form of Autism. This has been such a relief to have a diagnosis after all these long years of waiting. I applied for my son twice now and have been denied any help for him, they say due to income. Well I am on disability from cancer in my liver, but I make too much to let my son get it? WTH, I need help to keep him in the occupational, physical and mental health therapies that he needs. Now because of his diagnosis and the fact that the school has just pushed him through the system until now, he is in 6th grade working at a low 2nd grade level & they plan on putting him into a streamline program at the middle school. Think I finally have enough to fight and get his disability finally pushed through.

Rachel - posted on 12/01/2009

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I live in Ireland and am having the same problem..my daughter was getting a payment called Domiciallry Care wich is paid up until there 16th birthday when they then have to apply for adult disabillity....they have refused her on medical grounds ...they did not give her a medical....she is under a Pain Management Consultant, a Pead, an Occupational Therapist and a Psychiatrist....she takes 16 tablets a day...but they say she is not sick....!!!! What the heck?? I had to give up work to look after her...I get a Carers allowance....with free travel....she has a parking badge as she needs a wheelchair when the pain and fatigue is severe.....but she cant get disabillity....DOES THIS MAKE SENSE TO ANYONE are they allowed to treat people like this??? is it standard procedure.....

Tammy - posted on 12/01/2009

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my daughter turned 18 in October and we are waiting to find out if she will be qualified on adult disability, it's been 4 months since I turned in everything from her diagnosis, medical records, school records, and I even sent in information about her chromosome. She has trisomy x. Do they think when they turn 18 that the chromosome just disappears? This is ridiculous!

Crystal - posted on 11/19/2009

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Sara, have you applied for the Katie Becket waiver? It is a federal funded medicaid. It waives your income in order to have your child covered under strait medicaid. The qualification is medical not financial. Your state may call it something different, but every state has it. Call your social worker and ask about it or call DSS in your county and ask for the forms. Good Luck

Crystal - posted on 11/19/2009

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Tell me about it. We make too much money also, maybe I should sell my private jet? lol. Seriously, I have thought about re-applying just to fight it when it's denied. It really makes me so mad that adults get disability benefits and they are not even disabled. The system is screwed up.

Alicia - posted on 11/18/2009

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If any of you posting live in CA you will have a hard time with benefits if you make any money at all basically. The way that we got around that was by getting a waiver of income form signed by our case worker with the Regional Center. If there are any of you moms out there that aren't in CA that are having a hard time check with all and any of your service providers and see what they are able to do for you. It took us a few years before I heard from a mother of a little girl at my son's therapy center that it was possible for us to get medical coverage for our son despite our income. It doesn't mean that the service is good or quick, but you can usually fight to get what you need without having to sacrifice everything that you have worked hard for. We weren't able to get SSI, but there is a program in CA that will pay you to be the caretaker of your disabled child once they are 5 (or you can fight them and try and it get it earlier..I can't remember the name of the program, but your case worker should be able to help). Hope this helps! I think it's obsurd that we have to fight to get the things that our children need, but I'm sure it is because there are some bad seeds out there ruining it for the rest of us. Good luck to everyone out there fighting the fight. It only makes us stronger, right?!!!

Brandy - posted on 11/18/2009

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I'm so sorry that our government operates this way!! My son is 5 now and he has hydrocephalus and dandy walker syndrome and I never thought about SSI until his OT and PT people told me he was eligible and they would handle everything.The only thing I had 2 do was sign some papers and show up at a dr appt. and answer the phone for a telephone interview and he was approved.I just assumed it was that easy 4 every parent with disabilities so this is really shocking and very sad 2 read all of these posts!! I pray that all of these families will get the help they SO deserve.

Doricia - posted on 11/18/2009

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I had this problem. the 1st time that I applied I was told that he was not sever enough and that I could afford it.When my second son was diaqnosed I reapplied and was denied for the same reason this time I reguested an appeal and went before a judge explained my situation and thier needs. They recieved the SSI however I did not recieve any payments until I lost my job because I made to much.So it is a blessing that while I'm not employed we have something to substaine us I am still struggling to get them assitance they need.

Erin - posted on 11/17/2009

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You have to show a monthly need for the benefits (special food, medical equipment, or extra care) and it's very hard to get except in the most extreme cases. But don't lose those papers because as soon as your son turns 18 yo he will get his benefits as your income will no longer count against him..

Loni - posted on 11/16/2009

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Have u tried appealing the denial with doctor's statements and everything that would show he is eligible?

Sabrina - posted on 11/16/2009

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Quoting Brenda:

My daughter with Downs Syndrome does get SSI. I understand that DS is an automatic in terms of being disabled, so I just had to have all our paperwork in order. It went fast and uneventful. However...

I'm a stay at home mom for the past 2 years. When my husband was laid off, and we had no health insurance, barely making it....they dropped her SSI payments to $37 a month. I understand it's an incentive to get one of us out there working. Well, unemployment in our area hit 16%, and he was without a job, through no fault of his own, for 8 months. We just laughed when we got that $37 check....and on months with 5 Wednesdays, we got nothing. Now that he's working again we get about $250 a month. Some times they send us way more....I don't get how they figure it. The money is for her, so I can be a good mom instead of a worn out dishrag. It's for her clothes and dance lessons (which is PT that is never provided to us).

As far as our income, my husband makes $15 an hr and we barely squeak by. I really should be working too. We are buying a very modest home, and have 3 older vehicles that are paid for. And now due to unemployment, we have credit card debt. Oh well. Atleast her education is free!


 

Tina - posted on 11/15/2009

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Yeah I have been through this twice now. Social security says my 16 year old is totally disabled BUT because my husband and I are both on disability he won't get a dime. Now he lives away from us and we are still totaly responsible for all of his needs. I drive more then 300 miles one way to see my son once a month because that is all we can afford. I also send several boxes at a time so he has what he wants and needs but I am told IF I want disability for my son I have to sign him over to the state. The worst thing is that we have always lived on a budget and with him not getting anything more then what we get it makes it hard at times. Medicaid is a joke because we have a spend down or share of cost or what ever it is. We have to pay the first 1,509.00 or all medical before we have medicaid. Yeah that won't ever happen. It's so bad I had to buy insurance granted it's 17 a month but come on if my child is disabled please give him the insurance that he needs and stop being so stingy to all of us who are going through all of this with our children.

Tessie - posted on 11/15/2009

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I FEEL EVERYONE ON THEIR SITUATIONS. MY SON HAS SICKLE CELLS ANEMIA AND HE WAS DENIED THE FIRST TIME I TRIED. I BELIEVE HE WAS ABOUT 7 OR 8 MONTHS OLD. BUT, WITH THE GRACE OF GOD, I CALLED MYSELF AND STARTED THE PAPER WORK, AND WITHIN ABOUT 6 MONTHS HE WAS APPROVED. LIKE I TOLD THEM; MY SON HAS A DISEASE THAT CANT BE CURED, AND IT HAS A LIFE SPAN. IT HAS CHANGED DUE TO NEW MEDS NOW, BUT THAT JUST HELP KEEP DOWN INFECTIONS AND THINGS. HE TAKE A FOLIC ACID, 2 PENICILLIAN PILLS, AND FOCALIN PILL EVERYDAY. SO, SOMETIMES U JUST HAVE TO STAY STRONG AND JUST KEEP TRYING. PRAYER CHANGES EVERYTHING.

[deleted account]

What is your son's disability? Exactly, What did the denial papers say? How old is your son? What, exactly, did was he denied for? (His income too high, family income too high? Assets too high? etc.)
There are a lot of variables in the granting or denying, of disability benefits. You are talking about SSI, correct? SSI benefits stand for Supplemental Security Income. It is different than SSD, which stands for Social Security Disability.
It is important to remember SSI, is meant to supplement the income, It actually originated at the Welfare office, for people who hadn't worked enough, that had become disabled. Over the years, it became apparent there were a lot more disabled people who hadn't worked, and it would be considered LONG TERM disability. (over 12 months) So, at that point, the program was moved to the SS office.
Another thing that is important to know, the income limits. The $938.00 you mention, is not the income of the entire house. Re read your letter. It may just show you, more clearly, what the income limit, for the person disabled, is.

Autumn - posted on 11/14/2009

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I agree with you! When my daughter was born we had to fight to get it, we did get it then we were able to build a house that is handicapped accessible for her and they kicked her off because we had an asses to sell if we needed money to get her things. I could not believe it. I am sorry for you I do not understand it either I wish there was something we could do I know that the government does not understand how much more things cost when your child is disabled. When we got my daughters wheelchair and bath chair I about died when I seen the price of the two items. I hope that you are able to fight it and win disability for your son!

Brenda - posted on 11/14/2009

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My daughter with Downs Syndrome does get SSI. I understand that DS is an automatic in terms of being disabled, so I just had to have all our paperwork in order. It went fast and uneventful. However...

I'm a stay at home mom for the past 2 years. When my husband was laid off, and we had no health insurance, barely making it....they dropped her SSI payments to $37 a month. I understand it's an incentive to get one of us out there working. Well, unemployment in our area hit 16%, and he was without a job, through no fault of his own, for 8 months. We just laughed when we got that $37 check....and on months with 5 Wednesdays, we got nothing. Now that he's working again we get about $250 a month. Some times they send us way more....I don't get how they figure it. The money is for her, so I can be a good mom instead of a worn out dishrag. It's for her clothes and dance lessons (which is PT that is never provided to us).

As far as our income, my husband makes $15 an hr and we barely squeak by. I really should be working too. We are buying a very modest home, and have 3 older vehicles that are paid for. And now due to unemployment, we have credit card debt. Oh well. Atleast her education is free!

Donna - posted on 11/14/2009

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Unfortunately, almost 20 years ago I had the same problem. SSI should be given to us, but no one seems to understand that it's really needed - regardless of how much money they think we have. We were finally able to get him money as an adult, but even then it was a fight. It took us over 6 months, a phone call to the national office to check on our claim, and then my husband making a nuisance of himself at our local office to get them to finish the paperwork!

Kelli - posted on 11/13/2009

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My son is disabled as well. Earlier this year he was granted SSI, but when our income went up slightly, they cancelled it & we had to pay back the $120 they paid him & cancelled his Medicaic. I wasn't concerned about the $40 per month, I WAS concerned about his medical benefits because he had an upcoming open heart surgery. I raised heck with them, but it did not do any good. I think it is obsurd!

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