Question to parents of disabled children

[Mskanga]

Some of you may know that my daughter is currently undergoing through chemo treatments for bone cancer , she had a complete knee replacement as a result as well.
I had to quit my job in order to be able to care for her which means no income on my part. I applied for SSI for her and of course she was denied but I am wondering , can we still apply for SSDI for her eventhough she has never worked ? It is sad that people barely get any help when something like this happens , I have seen people who have to make choices between food to eat or gas money to get to the treatments. Any ideas or suggestions will be greatly appreciated.

 

[BeckyScott]

When we first applied for SSI, this is what I was told by many many people:

They will turn you down the first time.
Contest it.
And then contest it again.
That's how they get rid of people who aren't "serious".

The denial letter should have instructions about what to do if you don't agree with the decision. Do it. Copy off every single thing you have on paper and send it to them.

Do NOT "pay" for help at this point.

 

[momto2greatgirls]

There was a girl my daughter went to preschool with who had cancer, and the preschool (a church school) held a fundraiser for her family, all food was donated, admission tickets were pre-sold to ensure enough food etc, there was a silent auction of donated items....I don't know if you belong to a church or other organization, but if so you may want to ask for help that way. I know, I know, it shouldn't be that way.
I also agree with the previous post about contesting decisions made by SSI, again and again. Also, talking to the hospital where your daughter goes for treatment, they may have programs that can help.
Good luck.

 

[eternaldisneyfan]

SSI is often denied the first time. No, she can't get SSDI that is only for people who have worked.

What you have to do is make yourself sound pathetic. It is very degrading. List everything that you can't do. List all limitations. List episodes that happen and conditions that are triggered.

Another big factor is money. You can only have a certain amount of resources. A car is a resource. Savings account. Life insurance. Money left in the bank at the end of the month. So basically you can't have a savings account, life insurance, or spare money. It is very strict. So money could be your problem.

 

[Mskanga]

I think a visit with a good lawyer is in order at least to get information , I honestly don't know how single parents do it.

 

[SueM in MN]

I applied for SSI for her and of course she was denied but I am wondering , can we still apply for SSDI for her eventhough she has never worked ? It is sad that people barely get any help when something like this happens , I have seen people who have to make choices between food to eat or gas money to get to the treatments. Any ideas or suggestions will be greatly appreciated.

You don't want to re-apply for anything. You want to make sure that you are appealing the first application. The clock started with the application and if the claim is approved, it will be retroactive to the date of the application.
If you re-apply, chances are good for confusion.
You should not need a lawyer - they can be very expensive.
As the others said, look at the information that was sent back to you. It will explain how to file the appeal. Then look at all the information you sent in the first place to try to figure out where there are gaps, things that are not clear or places where you could answer the question more completely. Look at what you sent in like you are not familiar with the information and have never seen it before.

Check with Social Services in your state. I thought I saw on your profile that you live in Pennsylvania. Here's a link to the Pennsylvania Human Services Portal. There should be a social worker in the hospital where she is getting care who can help you with getting hooked up with services.

 

[mechurchlady]

As an adult it took the last appeal do get on Social Security despite scoliosis, a damaged disc, mobid obesity and more. It is sad when kids do not get the help they need. I have read too many times of people being denied the first time. My last batch of back check was delayed because the case work left the job and nobody looked in her desk so all her cases sat there. That was 1998 so hopefully it changed.

Sue is right about appealing and not reapplying. As for a lawyer there is a cap on what they can get but it is still paying for something you deserve and too much. Mine was nearly $5000 for $20,000 back owed to me. You need to find out why they denied the application. Good luck.

 

[Mskanga]

Thank you very much for all your information , the social worker in the hospital where we go is invisible ( I have never seen anyone ) and since our oncologist office is outside of the city , the social worker never goes there either , everything is up to me to figure out.
I hate having to do anything like this , but if my daughter is eligible for something I do not want her to miss out , she had a full knee replacement and with that she has a lot ot limitations now for the rest of her life , not to mention what else may linger from the cancer and chemo treatments.

 

[barkley]

Thank you very much for all your information , the social worker in the hospital where we go is invisible ( I have never seen anyone ) and since our oncologist office is outside of the city , the social worker never goes there either , everything is up to me to figure out.
I hate having to do anything like this , but if my daughter is eligible for something I do not want her to miss out , she had a full knee replacement and with that she has a lot ot limitations now for the rest of her life , not to mention what else may linger from the cancer and chemo treatments.

is your daughter an adult or a minor? if she is an adult then your resources and income won't be considered in the application process, if she is a minor they will.

one other thing to bare in mind-'limitations' in and of itself does not qualify a person for either ssi or ssdi, being disabled to the extent that a person (adult) is determined either totaly unable to work or impacted such that even with training or rehabilitation to learn an entirely new skill/profession AND with the accommodations guaranteed to disabled persons under federal ada laws-they will likley be unsuccesful in being able to work to a certain degree is much closer to the criteria. as an example-i had a friend who had cystic fibrosis since birth. as an adult he realy tried to work. unsuccessful with anything that exposed him to the general public (any cold or virus he encountered he caught and resulted in life threatening hospitalization), did'nt have the physical stamina for solitary labor intensive jobs, was restricted from working in some less labor intensive manufacturing or mailroom type jobs because of issues with dust that impacted his breathing, even tried doing some phone only type jobs but his lung capacity was impaired such that prolonged talking caused him to gasp, lose his voice and weaken markedly. he did multiple ssi applications and was only approved after he demonstrated to social security that despite anything available to him or set up to accommodate him-he could'nt reasonably work (i suspect if computers were as common when he made his successful application he would have been told to pursue training and attempt to do some type of solitary computer work).

the social security website has the latest (2008) updates on those diagnosis that are deemed 'disabling', so if your dd is not being denied ssi on the basis of your or her resources/income/property you could see if her diagnosis falls into one of the criteria OR if the symptoms associated with her diagnosis fall into another criteria that her doctors could document as substantiating her application on appeal.

 

[Juliah]

SSI is often denied the first time. No, she can't get SSDI that is only for people who have worked.

I just want to clarify that there is at least one way someone can get SSDI without having worked--that is if a parent who has worked retires and begins to draw social security, then the parent's disabled offspring can draw SSDI because of the parent's earnings. In fact, an offspring who is currently on SSI may (will?) be transitioned from SSI to SSDI when the parent retires and begins to draw social security.

It doesn't sound like any of that applies to the OP's case, but I wanted to mention it for the sake of others reading this who might be in that situation.

 

[SonicGuy]

We have 2 disabled children, one of which just turned 18 so she just started getting SSI again (she got it for awhile many years ago when I was still in college). A very good resource is your child's main physician. S/he will be asked to complete some medical forms on your child, so visit with them before hand and discuss the importance of the program. In addition, most states will also get your child on medicaid once she is approved for SSI.

 

[LauraVV]

SSI is often denied the first time. No, she can't get SSDI that is only for people who have worked.

You can get SSD for a child disabled before age 18 based on a parent's work history if a parent has been on SS for at least two years.

SS is usually denied at least once. Our daughter was able to get it at birth due to her extremely low birth weight. She received $30/month while hospitalized. She was able to get SS until I started working and we purchased a house. That made our assets and income too high for SS.