SSI and child with Down Syndrome..non disney related

[thelittlemermaid]

I have been wondering about this for my DD. She is 5 and has Down Syndrome and an ASD. I tried to apply for this when she was around 1, can't remember, and over the phone I was told that my husband made to much for her to get SSI.

Now a couple of years later, a friend of mine told me she knows a woman that has a son who has bi polar {?}, not sure of the spelling or what it is, and that she receives SSI for him. She is a single mom, but what I find funny is, she lives in a home that is 4 times bigger then what we have, one of those $300,000 houses, makes ALOT more then what my DH does. And on top of all of that, she receives $600 in child support, guess she likes to brag about it, from her ex-husband. Since SSI for children is based on what the parent{s} make and what assests they have, how can she be getting SSI payments for her son?

My DD qualified for BCMH {a program here in Ohio} since the ASD was discovered, but since the state has made cut backs, that has been denied cause of income guidelines being lowered. Now when it's time for her to go back to see her Cardio, we are going to have to pick up the rest what our health insurance doesn't get. And from the last couple of years, there has been alot left to pay.

Anyone have any experince with SSI? I would love to hear about it and how it went with you.

I also posted this on the Community board

TIA!!!

 

[SueM in MN]

Well, we finally got SSI for our DD now that she is over 18 and only her income is counted. Before that, we made too much money for her to qualify, so I don't know how the person you mentioned qualifies for SSI for her child.

 

[scrapperjill]

SSI responce...

Just wanted to add my two cents worth on the whole SSI issue...we applied for SSI a few years back for our daughter...well when we first applied a very nice gentleman who worked for SSA informed me to NOT get overwhelmed with the hoops and denial of benifets...because (simpley put) thats what they do...denie, denie, denie...hoping people will give up after the first attempt (and most do). He also let us know that her (our daughters) conditions were ones that would qualify her for SSI benifets...but they will most likely denie her...but he stressed...not to let the denial get the best of us...keep on seending the apps in, untill the accept her. Well luck had it...and she wasn't denied at all. But I have never forgot the words of advice from one of the employees....it's not to offten you find people who are willing to help others in thoses positions.

I don't know about the financial levels for SSI...we were also informed about a year and a half after she had been getting the benifits...that she was no longer able to due to our income being over the guidlines....I haven't found anyone willing to help with tips on this area yet...

Good luck.

 

[swilshire]

Along with all the other helpful info we received when our DS was born was a list of the maximum income levels based on the number in the family. We did not qualify (barely). We also just miss free school lunches every year, but that's a different story.

It's possible that the person who seems to have more income has more members in the family. It's also possible that she is cheating. FWIW, many states give a bounty to one who reports a cheater of this sort.

Sheila

 

[HopperFan]

DS with Down Syndrome and other issues did not qualify until he was 18 years old because they absolutely determine eligibility based on income and assets of the family before that. He is severely limited on what he can make, own or even be given OR risk losing benefits. The issue is not just the disability/medical condition (which is supposed to be thoroughly reviewed by a panel of doctors) it is the ability of the family to provide. Some states do have other programs that will come in and provide some help with medical/adaptive equipment for those under 18 who's families have too much in assets, but it's not SSI nor a monthly stipend.

JMO, but either she is not getting it (sounds like she likes to talk about what she has) or she is cheating !

 

[thelittlemermaid]

Thank you all for the replies!!!

I will go ahead and try and see what happens. My DH is the only one that works, I stay home with DD, don't really trust anyone to take care of her besides me or her dad.

As for the lady I talked about in my OP, it is only her and her son living in the house. From what my friend told me, it sounds like she is cheating to get SSI for her son, but I don't have any proof of that.

swilshire...We are in the same boat for the school lunches {reduced price}. Going by the weekly chart, we are over it by $13 {I think it's crazy they go by what you make before anything is taken out of your paycheck}, but somehow if we go by the monthly chart, we are way under by $171. But do you think they will go by the monthly, of course not. If DS wants to eat at school a lunch costs $1.85 and that is for very little. I don't see how these lunches can fill a kid up, to me it's not enough to fill a bird up. IMO, now I am just rambling. LOL!!

Thanks again!!! I know I can always count on fellow DISner's for advice and wisdom!!

 

[HopperFan]

When we got ready to do this we were given a great deal of advice by the pros at our school. They warned that it may take a few interviews and several months. One of the most important hints was to take him with us, that way he is a person, not a name.

I got the packet to fill out in advance. I filled it out in incredible detail. Dates, places, doctors, etc. I wanted no stone unturned.

When I went I took him, the packet, his chromosome test results, and his latest psychological test. The SSA guy could not believe all the detail I provided him. He said the chromo test was great because they did not have to verify his diagnosis and the psych gave all the other details.

I had a check in 3 weeks with a letter that the panel of doctors was still reviewing and we would find out later if all went through. I think final approval letter came in 90 days but no further interviews etc. We do have to keep details of how it is spent and fill out documentation every year.

I think me providing a complete packet with all the documentation was key in my experience being a good one. Of course, he was 18 so I wasn't in a position to prove that we did not have the income or assets. We just had made sure he had no assets.

We were also told that they will make the determination how much you get. There was no guaranteed amount, just a maximum. It may be that their threshold is more flexible because they will prorate the checks.

Good Luck !

 

[Michigan]

As a Federal employee (not Social Security but the one nobody likes) all Government agencies have some sort of program where if you let them know someone is cheating they will reward you and the person won't know you told on them.

Also, trust me eventually she will get caught and then she will repay plus interest and the Govenment compounds interest daily so by the time they collect what she would owe back it won't be pretty.

 

[SueM in MN]

There's been a srtory recently in the news in Minnesota about Mrs. Minnesota pagent winner who was convicted of fraud for claiming she was disabled and receiving $190,000 in SSI. Here's one of the newspaper stories about the conviction. The TV stories about her trial were interesting because they showed things like her scuba diving, riding on the area above the back seat in convertables during parades, shopping with heavy bags of groceries at a time when she had told SS that she was not even able to bathe without assistance. According to the news, she also made 100s of appearances for pageants, was the director of several pageants, worked for her husband's company (which she said didn't count as work, since she was not being paid) and had a home business selling pageant clothing (which she said was not work since she was not making money selling the clothing). Her family plans to appeal.

 

[MadisonMom]

There is a way to obtain Medical Assistance Card for a disabled child that is based only on the child's income, not the parent's income. It is called the Katie Beckett program. Each state has slots available for disabled children who meet the level of care determination. Without Katie Becket Medical Assistance, my son who is autistic wouldn't have had the access to services and treatment that have helped him so much. Perhaps the family that you know has accessed medical assistance using the Katie Beckett program or another waiver like it.

 

[LMC]

Are you receiving any type of services now from the state?
After we were denied SSI, I heard about a state program and we qualified! They have had my son evaluated for PT and OT and sent him to a urologist, cardiologist, orthopedic, and will cover our annual geneticist appt. I have health insurance that would have covered the dr visits except the $30 co-pay on each and our insurance does not cover any of his pt or ot. So the state program is going to provide the ot and we are going to do pt at home (horse therapy). We also have major dental issues (genetics) and if insurance won't cover that I am going to see if the program we are under will since it is genetic.
If your child has not been in early intervention, then contact them to see who can help. EI goes through age 3 then changes over. We are not involved in anytype of school programs (I homeschool him) but they are covering our medical. The EI representative may have some suggestions for those who are denied SSI. The case worker that handles us, was VERY surprised that the social security office did not refer us to the state office; she said that they are suppose to do that. AND, no doctor or therapist or other "professional" ever referred me. I heard about this program from other parents at the Miracle League ball field.

 

[SueM in MN]

Originally posted by MadisonMom
There is a way to obtain Medical Assistance Card for a disabled child that is based only on the child's income, not the parent's income. It is called the Katie Beckett program. Each state has slots available for disabled children who meet the level of care determination. Without Katie Becket Medical Assistance, my son who is autistic wouldn't have had the access to services and treatment that have helped him so much. Perhaps the family that you know has accessed medical assistance using the Katie Beckett program or another waiver like it.

That's a good point about Medical Assistance waivers.
The OP was talking about SSI, so they might have gotten MA through Katie Beckett, but not SSI.
The program for children to obtain medical assistance based on their income is called Katie Beckett in some some states, but has other names, depending on what state you are in. For example, in Wisconsin, it's Katie Beckett, but in Minnesota, it's TEFRA (Tax Equity and Fiscal Responsibility Act ). There actually was a little girl named Katie Beckett in Iowa who was using a ventilator to breathe. As long as she stayed in the hospital, her care was being paid for, but if she came home (which was much less expensive), no money was available. Her mother was her chief advocate to get an exemption made to receive Medical Assistance. Only the child's income is looked at to see whether they are eligible and since most kids have no income, they are eligible. One of the catches to the program though, is that there is a co-pay to "buy in" to Medical Assistance, based on the parent's income. So, for some families, the program is free or the co-pay is low. For others, the co-pay is high enough that they can't afford to participate. If you search for TEFRA and your state at www.google.com, you should be able to find info about the program in your state, whatever name is used.
The
PACER Center in Minnesota is a model for advocacy programs throughout the US. If you go to their website, you will find links to programs all over the US.