Disability denied my disabled son benefits!!

Janice - posted on 03/08/2011

I don't know where you live but I'm in the US in California. My son is now 30 but has been on SSI since he was 3. His diagnosis is mild-moderate mental retardation with ataxia.Find out if there is a REGIONAL CENTER near you. If there is contact them and they will help you get a diagnosis, get on SSI, medical ,any equipment your chil needs, schooling, activities, and they also have support groups for caregivers-parents. Another way to get SSI if they have dennied you is to hire a lawyer. If you can't afford one look into Legal Aid,Legal Schools will do it pro-bono.Usually the 1st time you apply they deny you so just keep applying. I don't know about other states but, CA has a lawyer that goes to each library one day a week to help people with this kind of need.Also another person that can help is your local ombudsman-you can find the number in the phone book, Also look in the phone book under Developemental Disabillities, and in the State or Government pages in phone book for Disabled services. You can also talk to your local school for programs in your district and if they know about your neerest Regional Center.ou may have to go to your schools District office. Don't be afriad to ASK and to Search. I hope this helps at least one of you. Your child is due all of these programs and you owe it to them to atleast look into these.Good luck and GOD bless all of you on your searches.

MICHELLE - posted on 11/02/2010

I had the same problem in NY. I wa denied 4 times, the last time I told them to break my husbands salary down to a 38 hour work week,(he did alot of OT), and when they actually broke it down loke that, we WERE eligible. We get different amount every month there is 5 weeks, but it definitely helps...good luck and dont give up!!!

Kimberly - posted on 11/02/2010

I've been going through these hoops for 15 years! We make too much money. Nobody budgets and saves in case they would ever have a special needs child. Why do they make us feel like we need to get a divorce just to make our income look low on paper so we can collect "welfare". Yes, Indiana doesn't call it SSI for disability...you are basically applying for welfare!!! I also applied for funding based on medical needs but my son was not sick/disabled enough!!!! We now have to wait until he is 18 years old for any $ help

Cheryl - posted on 10/31/2010

after reading this i am so glad i live in Australia. My daughter is 16 and has just qualified for the disability pension, which will be around 313 a fortnight, i also receive a carers allowance of 40 something a week. my goodness it looks so hard for alot of you over there in the states, i sure hope you can sort something out. No they didn't look at our income, this is what she receives with being with us, if in the future she goes to some shared/cared living, she would get a little more. i have heard medical is not nice over there, i can see it isn't by what your saying.

ASHA - posted on 10/29/2010

YOU MIGHT WANT TO CHECK INTO THAT. MY SON IS DISABLED AND AT FIRST THEY DENIED HIM. THEN I REAPPLIED AND THEY APPROVED HIM. THEY ALSO CONSIDER FACTORS SUCH AS IS HE ON MEDICATION, RECIEVING ROUTINLY MEDCIAL TREATMENT, THINGS LIKE THAT. YOU MIGHT WANT TO CONSULT WITH AN ATTORNEY.

Erin - posted on 10/28/2010

I hate to hear that it is so hard for people to get ssi for their children. Fortunatly, for me and my son it was extremely easy. I applied when he was five months old and we got it when he was seven months old. It was only easy because we had no other means of income at the time and my son also has a lot of developmental problems that are caused by the heart condition that he has. Even though that part was easy for us, getting the help for his speech and developmental problems has been another story. He's 19 months old (almost 20) and he doesn't even say "mama" yet. He's about a year behind in speech. He's a little behind in others, but the government makes things so difficult. I'm greatful for it, but at the same time, I wish it were different.

Vicki - posted on 10/12/2010

I went through something very similar with my oldest son, whose now 12 years old. We applied for SSI a few times, and were denied each time. My son's DX is Mild Mental Disability, Verbal Apraxia, Dysarthria, Central Nervous System Dysfunction, and ADHD. ( Those are just the big ones.) We finally had someone on the inside of the system tell us to contact a home health agency and ask for a evaluation. It didn't make sense to me at the time, but if your child qualifies for home health care ( or respite care, as it's sometimes called ) then it should also qualify them for Medicaid. I think it's called the Waiver Program. That's how we have my son's Medicaid card, and it has nothing to do with our income. I know different areas have different programs, but it might be something worth looking into. It certainly paid off for us!!!!

Melinda - posted on 10/12/2010

SS guidelines are based on family size and income and they are more generous then the guidelines for some services. I am not sure about how many people are in your family, but our income is almost twice that and we have 5 people ( 4 disabled). If you dont qualify because of making too much money perhaps you can apply for other services, depending on the state you live in. In Georgia if you cannot get SS you can apply for KB if you need medical help, and if you cant get SS or KB there is still a third option called Champions for Children through easter seals. Lots of states have different programs. Its very fustrating, I know as we are waiting for SS to start again if approved and its taking forever for them to decide even though income is all that changed- my child that got SS still is the same- autism, bipolar etc does not change much in a year!

MARINA - posted on 10/12/2010

Don't stop appealing. Your best bet is to get an attorney. They will handle everything. They only get paid if you win. Do not stop appealing if you do not want to get an attorney. The best way is getting an attorney though.

Marian - posted on 10/11/2010

keep fighting for your son, you are his voice and tell them clearly that he didn't chose to be disabled and your income should not matter. other issues people are having is that the income from disability is keeping the parent from receiving Medicaid which is crazy because as a single mother i need to stay healthy to take care of my disabled daughter.
Keep fighting for your son! get a lawyer and FIGHT them!

Angela - posted on 10/09/2010

My friend went thru this and have heard a lot of info... not sure if we are going to apply or not. Anyway appeal it and when you do (if you do it in the time frames they require) once it is approved you will get benefits retro-active to when you first submited your application. Just don't wait too long, otherwise you can't get back pay. Godd Luck!

Tamara - posted on 10/06/2010

If you have income issues there are lawyers that will help you. I have no money, and my son has been denied twice now. They do all the work for me. Thank the lord, I don't think I could do it! They will tell you if they think you could win the case or not at least.

Misty - posted on 09/27/2010

apply again.. they did it to my daughter too... they think u wont fight it.. they will have ti back pay you from they 1st time you applyied.. i make more then that and she gets it... keep appying they will except you...

Nicole - posted on 09/24/2010

in the state of ohio if you fight it and you keep applying when they finally approve you you get all the back pay from the first application. like you apply today being 9/25/10 and you get approved finally a year from now in 2011 they pay you from 9/25/10 all the way to 9/25/2011 and will continue with benefits.

my daughter has albinism which means for her legal blindness. but we are hearing contradictory stories. the father and i are together but unmarried. some people tell me to clame that i am a completely single mother and others tell me my SO's income wont matter. we qualify for medial throught he state as transitional medical but not covered families because he makes over 90% of the poverty level. his income could never pay her medical bills or needs. We live like most other people which is pay check to pay check some times we get extra but that is gone into clothes for our daughter or diapers. would making 11.40 an hour too much even when it gives alot of over time. the OT is nver constant but that is what kills us alot of the time for benefits and prevents them from being approved. it makes me wonder if we should separate for the sake of our daughter at times=/

Jillian - posted on 09/19/2010

My daughter got denied too. We had to claim bankrupcy because i was out of work for 3 weeks with her second shunt surgery. We lost everything. then I got a new job that i made too much money to get her benefits. I just wanted it for the health insurance because I had to pay $100 each time we went to emergency room. Also to take care of copays but they denied us. I think it's sad when I see people who have nothing wrong with them get benefits and our children can't get it .

Mandee - posted on 05/19/2010

Depending on the disability, there are also other programs that may help, like Easter Seals, etc. We have benefited greatly from them.

Jeanette - posted on 05/18/2010

i went through a simlar problem last year with my little girl. she is 9 yrs old and has had problems since she was 6 months old. i had already previously applied and was accepted and last yr had to reapply. i received a letter back saying that i was accepted but they had actually cut the money i was receiving for her in half. i was furious as they claimed that this was because she didn't need to be seen to in the evenings after she was put down for the evening and also because she could walk with a walker. i immediatlly phoned them up and demanded an explanation and explained to them that although she could walk with a walker she was only just begining to learn, and therefore couldn't walk for long distances, and as for the not needing to see to her after she got put to bed i told THEM to come round and see to her at 3 in the morning when she was having sezieures. i appealed and within a week had it all sorted. although it is slightly different for us as we live in the uk. may be try to get his medical records and letters from any specialists that he is under and send them of with an appeal letter. hope it all works out for you and your family good luck

Mary - posted on 05/16/2010

oh my god i really feel for everyone of you, i mean i live in northern ireland and dont work because i was up untill january of this year my yougest son who has cp's only carer and i could not have coped without the disability living allowance that i receive for him he is now just over 4 and is attending special needs school, we are very lucky here because the dla is awarded wheither you work or not even since my partner left work to move in to help me with our son because i have health problems too it still hasnt changed i think the uk is pretty similar so dont know if this will help much of you but no matter where you live fight as much as it takes because your kids need and deserve what is owed to them they didnt ask for any complications they may have

Heather - posted on 05/15/2010

I think they automatically deny most people the first time, just to weed out people? Just my un official observation! Keep appealing, as many times as allowed, then go to an attorney and go before a judge. Plead your case, take your child (if allowed) so they can see for themselves. Something that works against you.. if you can't afford to take your child to the Dr./therapists... there's not much of a medical record of the disability. They look at that against you "oh, well you haven't had to take your child to the Dr" that must mean you don't need to? It works against you. Having a strong medical file will help you.

Selena - posted on 05/14/2010

my son received ssi for a few years but they kept telling me they paid me too much and they want their money back. i gave them all the info they asked for and they made the determination based on my husband's pay. i kept having to fill out paperwork for waivers so i wouldn't have to pay them back so finally i just decided it wasn't worth it anymore.

Andrea - posted on 05/13/2010

Michelle, I'm in Philadelphia PA.

Linn - posted on 05/12/2010

Well this gives me little hope of getting SSI for my 2 kids with special needs even though only one of us can work because of the lack of available child care for our kids. My son has autism, asthma, allergies, global developmental delays. My daughter has CP, asthma, vision deficits, orthopedic problems with her neck that make it impossible for her to hold her head straight. There is no possible way for us to pay for all thier therapies, let alone equipment. Gotta love our government!

Michelle - posted on 05/12/2010

Andrea, where are you located?

Michelle - posted on 05/12/2010

I feel your pain. I applied twice and was turned down for making too much money. It's ridiculous. They don't take into account the bills we have to pay and they should focus on take home not the gross.

I could see if you were rich but regular working class people shouldn't be denied. If we didn't need it, we wouldn't be applying.

I applied again and am going to appeal all the way to President Obama if I have to (hey, everyone else reaches out to him for help). Maybe we should start a petition?

Andrea - posted on 05/12/2010

My son was denied last year for the same reason. I'm a single mom and my son was diagnosed with moderate/severe autism in '06. They are in agreeance about his disability, but because my gross income is $2200 and I bring home about $1600 a month, they flat out denied him. My son who is now 7 has limited life skills, cannot dress himself, can barely feed himself, is not potty trained, and is just learning to speak. I am so frustrated because he really needs the money just for his feeding issues alone, because he cannot eat most solid foods! The government is so screwed up. What the heck am I paying taxes for?! I get no support from his father, and I'm living from paycheck to paycheck, like most of you here. I just found out I'm expecting another child, so its gonna be even harder to provide for my son's special needs. I don't understand why he was denied disability when he was approved for Medicaid because of his disability and my income wasn't even a factor. They approved him for Medicaid right off the bat! I'm not sure if my appeal has even run out yet since its been over a year. I'm sure I will have to reapply, but having to deal with being denied again and the thought and cost of having to hire a lawyer is what makes me want to give up and just say forget it! My parents who are both retired are helping me care for my son, but even their income is not enough to help. I hate the way this sorry system works, because they will give to those who don't need or deserve it (like those who take advantage of the welfare system) and people who do desperately need it for serious reason can't get squat! It shouldn't matter how much freakin money you make! It should be based on the needs of the childs, and all special needs kids need help in some way or another! These government programs need a serious overhaul, like yesterday! I will keep everyone here in my prayers and hope that we all get what we need for our kids!

Janet - posted on 05/11/2010

They will always deny you first. My son was denied and we got an attorney. Now he gets benefits. Sad that you have to do that, but they will ALWAYS deny you. I think they sit back and see who really will fight for it. Not fair, but it's our society.

Brenda - posted on 05/11/2010

SSI has only been around since the 1940's. Before that, people went without, even died because there was no help. I also have a head injured brother-in-law who is in a nursing home. SSI and medicare take care of all his needs. My husband and I take care of his clothes and treats.

SSI is a social program based on what you make (and what you've paid in). It's kind of like welfare. Those who make too much don't get it. In our state, too much for a family of 3 would be around $2500/mth. This insures that the family can eat and cover some basic bills. It does not mean you get to go out and eat, out for coffee, have new cars, expensive clothes, etc.

When I think of what my life would be like if my daughter and my brother-in-law did not receive SSI....we would be destitute. As it is now, we can afford a modest living, but will never really get ahead. That was the choice we made when we decided to have our daughter.

This is something that no one really likes to talk about. It makes people uncomfortable, because it goes against the work- hard- and- climb-your -way -to -the -top work ethic our country likes to believe in. When you have a child with special needs, you are going to be less well off, than your counter-part with a normal child. This is simply a fact no one talks about. This is not understood, even within families. We have one relative that helps us out with my husband's brother. I do feel that we are looked down on by some, because I get a small amount from SSI for our daughter (6, w/DS).

It's very hard for a mom with a special needs child to work. Our kids get sick more often, they aren't always welcome in daycare, they need our attention. So, most of us have to give up mom's ability to bring home a pay check. If Dad brings home a decent check, then SSI is out of the question. SSI does not factor in special equipment, special feedings, anything like this....from what I understand, it's basic money for living.

So, what I've figured out, is ---Life is harder and I will not be as well off as my peers. Period. Factor in my brother-in-law, and I am so darn grateful that SSI exists. I could not care for my daughter w/ DS and my BIL w/traumatic brain injury---both at the same time, and be sane. My husband does not make enough to cover all the medical and basic needs of both. This is what families faced before SSI....in caring for relatives and elderly parents.

In Oregon we have Developmental Disabilities Service, they can contribute up to $1200 a year for special equipment and respite care. However it took us 4 years to tap into this service, as they did not have the money in the beginning.

Erica - posted on 05/11/2010

I did and we finally qualified! It just took time and 3 appeals. They always say no on the first one. Do you have plenty of DME equipment? That really helps.

Sarah - posted on 05/10/2010

Hi I'm new to Circle of Moms, but just the other day i recieved a letter from SSI telling me the same thing. His dad makes to much so they cut him off completely. I'm furious with the decision. I'm like you; it's for the kid.

Liz - posted on 01/21/2010

Thank you for that post. It was inspiring and made me realize that I just need to keep trying :)

Liz - posted on 01/21/2010

I'm on my own, and I still have the same problem. I feel as though I would have to live in a cardboard box before my son would get the services he needs. It scares me because I'm afraid of what will happen to him when I die.

Stacy - posted on 01/17/2010

I had the same problem a few years ago, and I was told I had to appeal it and even then there was no guarantee that he would get it. we were also denied because of the amount of income we make. I asked them if he would recieve these benefits when he turns 18 and they said he will if he doesn't live with us. So it seems a bit dumb that in order for your child get benefits is for them to not live with you. I have talked to a lawyer before and because my husband is Navy we don't have much of a choice. If anyone has learned anything different please let me know. I have been wanting to save up to build my son a small house on my property so he can be independent some day but always be close to me. So I can understand how you are feeling I have felt the same way for a while now.

Susan - posted on 01/17/2010

Hello,

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Belinda - posted on 01/16/2010

My son was denied disablity the first. We appealed and he was approved. I know they go off of income and we might not of had it if we didn't have so many kids. We are having troubles with disablity because they owe him back pay but won't let us spend it on anything but on their idea of what he might need which for him their list doesn't fit. Very frustrating. You can try to appeal but I don't know if it will make a diff if it's the income issue.



Belinda

Carrie - posted on 01/16/2010

That happened to me when I applied when my son was 2 yrs old. They said we made to much money. Once he turned 18 I helped him apply and he got it no problem. BUT, I would strongly recommend fighting it or apealing it. You;ll get it. I know it's a very frustrating and tiresome ordeal, but your son is worth every bit of it. Medicaid denied my son 2 years ago and we appealed it , it took a year but we won. It can happen. Hang in there.

Sherry - posted on 01/09/2010

Have your son re evaluated with a different agency for his disability. If you don't already have a letter from his current pediatrician regarding his disability-get one and make sure your doctor is aware this is for benefits so he/she doesn't sugar coat the issues. You have a right to appeal this decision and I would strongly encourage you to do so. I few agencies we found out about are ActivStyle.com the provide diapers and misc medical supplies after age 3 and it is charged to Title XIX. There are also many local agencies that can assist families in your situtaion. If celerbray palsy or other physicla issues you may also be able to have the Shriners help you with adaptive equipment. Also most states have a 'craiglist' type of website where SN families sell or give away or trade adaptive equipment and or services. Your doctors office should be able to give you some direction to help you on your way. Hope this helps! :O) Keep your chin up. I know it seems like such a fight all the time to get the most basic of things for your special child-I wish I could say it wasn't that way everywhere but it is. Hopefully someday enough of us SN moms will rise up and start demanding action and assistance!

Tori - posted on 01/09/2010

My son was denied because they said he was too high functioning. I have since been told that usually everyone is turned down the first time and you have to fight it. Not sure if that is true or not, but something to think about. I don't think "the system" really tried with my sons case though. They didn't look at his medical records, they didn't request info from his physchiatrist, or counslor, or school. It was based on a 20 minute session with a primary doctor that had never seen him before, an hour long session with a counslor that had never seen him before and then he was denied. So good luck!

Denise - posted on 01/09/2010

thats the government for you but i would keep appealing it and get a good lawyer may i suggest 1-800-66-Binder they got my husband his benefits in two weeks after fights and appealing for two years

Teresa - posted on 01/09/2010

I did reply and it is not showing?????

Tania - posted on 01/07/2010

my daughter has mild cerebral palsy and didnt get it either,she has lots probs with balancing,speech.

Tania - posted on 01/07/2010

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.

Kay - posted on 01/07/2010

I was told that noone could put my daughter in a will or the state would take all the moneys willed to her because she has been getting ssi

Kay - posted on 01/07/2010

I hope you tried SSI and SSID. The sad thing is that the government is so broke that our wonderful disabled children are the ones suffering.

Julianne - posted on 01/07/2010

Sabrina, I have a child who is profoundly disabled as well. Have you applied for a Medicaid Waiver? With a waiver, they have to disregard your income and only look at the child's income. That's how we finally got benefits, including nursing.

Rosina - posted on 01/07/2010

Wow! After reading all this, it makes me realise how lucky we are over here in NZ, we have all equipment (wheelchairs, standing frames,walking frames, hearing aids &Batteries) all supplied for us! Also we don't pay for surgury unless its done privatly, & we get a small fortnightly allowance to help out with anything else they need!
Sometimes its so easy to focus on the negative, so thanks for reminding me how luck I actually am!

Ronelle - posted on 01/07/2010

Hello -



I am writing from Oregon and am the mother of a 17 year old son with dual developmental disabilties. I remember the shock and dismay when we went through this way back when he was a toddler. I have since learned through legal research and trainings on policymaking in the disabilties arena that this is a very common occurrance and it takes a great deal of time and effort and personal advocacy to achieve any results in attempting to get social security for a minor child.



While we all know as parents that there are a myriad of extra costs associated to raising a child with special needs that are not acknowledged and are little known, even by our well meaning family and friends. However, as indicated by the post from the mom who works in a law office (as do I) social security income is really designed to replace "income" for persons who can not earn their own (so targeted to adults) and social security disability is similar. It wasn't really anticipated to be a replacement or even a supplement for the financial support of parents for children with disabilities. We would need to develop a whole new section/program for those type of benefits - and maybe that is an effort some good lawmaker will take on for us some day.



Having said that, it is also true what some of the posts said about not giving up if you really and truly need the added income. Use your government resources, you may qualify for legal aid assistance (legal services for low income families). You may have an advocacy agency in your area dedicated to working on legal issues/rights for all persons with disabilities (google phrases in your state like "disability rights" or "disability advocacy"). Additionally, every state will have a development disabilties council or similar state agency who has experts on these laws and benefits and our rights. Use them as a resource to educate yourself on whether or not continuing the fight for social security is likely to benefit you or if not, to help you find other options such as state or county funding/grant/benefit opportunties.



Hang in there! Ronelle

Shannon - posted on 01/07/2010

We went through the same thing...We were even told that my son who has downs could be cured by the social security office..keep on fighting it took us alomost a yr. the ss office has to back pay us....good luck.....

Teresa - posted on 01/07/2010

how old is your son? That plays a huge factor in everything....Second question, he had benefits and the they were taken away? If he is under 18yrs of age Yes it all depends on you and your spouses monthly earnnings. I am a mother of a 22 yr old withC.P. now divorced. I have been a child advocate for 20 plus years....I do have some answers for you and would LOVE to help you!!! Please feel free to email me anytime: Terenec7@aol.com....I have been thru it all and may have alot of info. for you!?

Millie - posted on 01/06/2010

just want to say THANK YOU everyone...ALL your input is very HELPFUL :)

Noelle - posted on 01/05/2010

That happened to me over a year ago I just gave up it's total bs