Do any of your kids receive SSI?

[Hannahs Mama]

Hi,
Maybe this has been discussed before but am just wondering if being with a SN child qualifies him/her to receive SSI?
A nurse mentioned to me that we should be receiving some supplemental Income for our child becomes she is "disabled". Has anyone applied for SSI in their state and how did you go about it? requirements?

Thanks a bunch!

[twintotwin]

Again, like the WIC, your income has to be super low to qualify for it in NJ. Did Hannah get institutional SSI? Once she is out she won't get it unless you are under the maximum yearly income.
My boys got about $30/month when they were in-patient only. Once they were home and considered in our care we lost it. Not that $30/month will be missed.

I can tell you there are things you're eligible for in NJ. Your DDD rep won't offer it up- you have to request it.

A cash stipend and respite cash. Also there's CIF who will buy you a van that is modified if your child is disabled. They will also refund any money you spent on Hannah's care over a year, as long as you keep receipts and it meets a certain percentage. Let me know if you want this info.

[LKN]

It is a complicated issue. There is a link somewhere in the parent resources on this.

It depends on the state you live in, but it is based on income and the nature of the disability. My son qualified based on his birth defect but did not ever receive it because in our state our income was counted as his. Some states have waiver programs for this purpose, but in our state the waiver was not good enough.

There is a lot of paperwork to fill out. You can find info on the social security website and your state disability website. Sorry I can't be of more help.

[bryantem]

According to the SSi website, having a trach does qualify a child for SSI, however you have to be within the income limits as well.

[Hannahs Mama]

Again, like the WIC, your income has to be super low to qualify for it in NJ. Did Hannah get institutional SSI? Once she is out she won't get it unless you are under the maximum yearly income.
My boys got about $30/month when they were in-patient only. Once they were home and considered in our care we lost it. Not that $30/month will be missed.

I can tell you there are things you're eligible for in NJ. Your DDD rep won't offer it up- you have to request it.

A cash stipend and respite cash. Also there's CIF who will buy you a van that is modified if your child is disabled. They will also refund any money you spent on Hannah's care over a year, as long as you keep receipts and it meets a certain percentage. Let me know if you want this info.

Wow!...only 30 dollars a month??...that cant even buy diapers for a month! I know you really have to research to get information and benefits over here no one is willing to give it just like that...you wonder what these people get paid the big bucks for.

[twintotwin]

I don't know how Hannah is developmentally but after age 3 medicaid covers diapers...no matter what your income is. See, there's so much a new parent won't know unless they network. Which is exactly why I promote networking between special needs moms!

[Niff]

$30 is the NC medicaid standard for inpatient SSI benefits as well. Like others have said, income is the big factor. Mackenzie medically qualifies, but we make too much.

[Madeline and Molly's Mom]

It's my understanding (in Mass anyway) that SSI applies only while in-patient... unless you qualify under the income level once she comes home... I think it will go away once she's home.

The case manager at my nursing agency was the one who mentioned diapers to us... I have no idea if we'd even qualify, but I was taught a lesson in that. Find someone, anyone... that knows the system and can be your advocate.

[ericnrosesmom]

We're in Indiana and we qualified under the income limit for SSI. DH works for his dad's tree service. We get $606/month from SSI and it's an absolute lifesaver! You should definetly apply, the worst that could happen is they could turn you down but it's worth a try.

[Hannahs Mama]

I don't know how Hannah is developmentally but after age 3 medicaid covers diapers...no matter what your income is. See, there's so much a new parent won't know unless they network. Which is exactly why I promote networking between special needs moms!

free diapers?? you kidding!..... well she is only 15 months but wow!...i will definatly look that up. maybe i can ask my social worker about it. or who is best for this?
Hannah is not delayed developmentally though but i'll try and see what she can get.

[twintotwin]

free diapers?? you kidding!..... well she is only 15 months but wow!...i will definatly look that up. maybe i can ask my social worker about it. or who is best for this?
Hannah is not delayed developmentally though but i'll try and see what she can get.

You'd get them from Medicaid- well, you'd find a place that has them like a medical supply company or your DME (mine doesn't carry diapers)- then they will bill medicaid. I'm not sure what's going on with your insurance, you're going on NJFC or straight medicaid, and how NJFC works- because it's a form of Medicaid- yes? Do you pay out of pocket for it?
Like I said, when my twins capped out of our private insurance they were eligible for straight Medicaid through their 'medically needy' program. They divert our income from the twins only.

[Hannahs Mama]

You'd get them from Medicaid- well, you'd find a place that has them like a medical supply company or your DME (mine doesn't carry diapers)- then they will bill medicaid. I'm not sure what's going on with your insurance, you're going on NJFC or straight medicaid, and how NJFC works- because it's a form of Medicaid- yes? Do you pay out of pocket for it?
Like I said, when my twins capped out of our private insurance they were eligible for straight Medicaid through their 'medically needy' program. They divert our income from the twins only.

For some reason no one is willing to discuss that " medically needy " option with us. They say since she was covered by my job then its their policy that she doesnt get NJFC until after 3 months. The also said she cannot get straight medicaid because i dont meet the income eligibility. i have been on and off the phone with them and even going there with my child but no one is helping. they push us from one office to the other until yesterday when they said she will be covered from July 1st by NJFC group C. We asked if they can start her coverage June 1st instead, they said no. It doesnt work like that.
I pay NJFC a premium for my two kids insurance, like 80 bucks a month.

[lil' G's mom]

In California, G automaticaly qualified due to birth weight, under 2 Lbs he got $50 in hospital and now $734 plus medi-cal. He will be re- eveluated at 3. And will either be droped or re approved based on issues at that time. I know SSi is federal but like most things each state has different criteria to base decisions on. Good luck.

[rosi's mom]

Here's another thing we learned, even if you qualify income wise you can't have assets. We own our two cars outright so they counted against us. We also have a bank account for our kids that has all their birthday and Christmas money since they were born, plus some extra money that my uncle (he's rich) has given us for the kids. That's in our names so it counted against us. If we were to sell at least one vehicle to cover whatever expenses and use the money up in the kids bank account, then we could receive SSI for Rosi. That was not an option for us so we were pretty frustrated, but we need two vehicles. DH works 1/2 hour away and Rosi's appointments are all at least an hour away. He can't miss work for all those appointments. Plus, the other account is the kids. It's not ours at all. It just didn't make sense.

[JandD]

I don't know if it is a Virginia thing or adoption thing, but they will consider a child's income independently of the parents' income. I can ask our SW if that is for adopted children only.

[Kaylie]

Virginia goes by parents income also, like NJ and so forth, you pretty much much have to fall in the poverty level to recieve it, but for you its worth a try it doesnt hurt anything to try. i know you said that noone likes to tell you about programs and what you could qualify for, its like that here as well, But you have a great advantage Kerri can help you so much she has been thru it all and will be your biggest helper putting you in the right direction of what the state offers..

[bryantem]

Arizona goes by the child's income as well. Addy had to get approved for DDD and was approved because she is at risk for a qualifying diagnosis. Then her DDD coordinator had us apply for long term care (ALTCS) which she will have for 3 years. ALTCS will cover everything insurace doesn't.

[twintotwin]

For some reason no one is willing to discuss that " medically needy " option with us. They say since she was covered by my job then its their policy that she doesnt get NJFC until after 3 months. The also said she cannot get straight medicaid because i dont meet the income eligibility. i have been on and off the phone with them and even going there with my child but no one is helping. they push us from one office to the other until yesterday when they said she will be covered from July 1st by NJFC group C. We asked if they can start her coverage June 1st instead, they said no. It doesnt work like that.
I pay NJFC a premium for my two kids insurance, like 80 bucks a month.

You need a "letter of denial" from your own insurance. Will they give you one?
But- what I'm thinking is this...if she isn't denied, if she's able to go onto your insurance then they won't accept her for medically needy- HOWEVER, she can get it as a secondary insurance. For us, we capped out of our maximum allowance of $3Million so the policy was no longer valid.

[twintotwin]

I don't know if that was clear now that I've reread it.

You need a letter of denial from your private insurance stating they will not cover her and why.
If they will cover her then you can apply for 'medically needy' straight medicaid so they will cover anything your private insurance won't such as diapers, anything Hannah needs that is OTC such as diaper balm. They will also pay your co-pay (if your doctor accepts Medicaid), and when/if Hannah caps out she can have it all set up.

You do not have to meet the income requirements (or lack of!) because it's diverted from your income. It would be Hannah's own personal policy.

I knew this was available because other parents received it- and they were not low-income either. I went searching when my boys came home from CSH. I knew it was out there. But I actually had to go down to the Dept of Human Services in my county seat, ask about 10 different people who claim to never have heard of it...only to find the ONE person who finally knew what I needed and helped me fill out the application which they referred to as the "white application". It's there, it's available to Hannah. I was persistent because I knew it existed. I also know that many of the government workers I have dealt with were lazy, ignorant and/or overworked, underpaid and frazzled. Many of them could not care less. But it's there, and you'll need to be aggressive if you want to get it for Hannah.

They pay for equipment, orthotics and many, many other things that insurance won't cover.

[Hannahs Mama]

I don't know if that was clear now that I've reread it.

You need a letter of denial from your private insurance stating they will not cover her and why.
If they will cover her then you can apply for 'medically needy' straight medicaid so they will cover anything your private insurance won't such as diapers, anything Hannah needs that is OTC such as diaper balm. They will also pay your co-pay (if your doctor accepts Medicaid), and when/if Hannah caps out she can have it all set up.

You do not have to meet the income requirements (or lack of!) because it's diverted from your income. It would be Hannah's own personal policy.

I knew this was available because other parents received it- and they were not low-income either. I went searching when my boys came home from CSH. I knew it was out there. But I actually had to go down to the Dept of Human Services in my county seat, ask about 10 different people who claim to never have heard of it...only to find the ONE person who finally knew what I needed and helped me fill out the application which they referred to as the "white application". It's there, it's available to Hannah. I was persistent because I knew it existed. I also know that many of the government workers I have dealt with were lazy, ignorant and/or overworked, underpaid and frazzled. Many of them could not care less. But it's there, and you'll need to be aggressive if you want to get it for Hannah.

They pay for equipment, orthotics and many, many other things that insurance won't cover.

This is really good information. Stuff that I had no idea existed. If only I knew this before I took the word/advice of those people at NJFC and Medicaid. But now our next job enrollement is in october and they cant put her back in cos i voluntarily had her dropped so that apparently she can continue being covered by NJFC, only for them to drop her .The good thing is her pediatrician will continue to see her even without insurance and thank God she doesnt have any appointments with ENT until mid July. The only problem is we cant get nurses until July but her dad is doing a great job staying with her since he is not working right now. Then, I thank God for the wonderful God-sent people on this board for all their support and kind donations. I think she will do just fine. They also mentioned that after they get her back on NJFC group C, they will try and get her back to group A or straight medicaid since she is an SN child. We'll see.