Just want to Rant, Feeling Nervous of SSI

ldy_solana

ldy_solana

Cathlete
good eveing all,

i just want to let this out so plz bare with me. i recieved a letter from social security about our daughter's SSI check. they are re-evluating our fincial situation. understandable you have to make sure the right ppl are getting the right amount and so on. my problem is they want to see my bank statements. fine i understand you want to make sure i am using the money right,but hubby's check also goes into this account. now the account is only in my name but that shouldn't be a problem. my problem is the charges i have on the account. you know deepdiscountdvd,cathe, and various resturants we frequent. i am just worried that they are going to hold these things against me when we go in for review.

now there are not alot of charges, not even close to $100 a month, on the statements. they are only maybe 1 or 2 a month. my concern is they going to say we are being frivolous with the SSI when not all of this money is from SSI(besides i only get $500 how far do they expect it to go after rent that is $480). the SSI is my only security that she will have medical coverage and all her needs are taken care of. if they cut some of the money fine i will figure it out.i just hate the idea of them taking it away, i lose the medical coverage, over a couple silly charges. we like to go out to eat. we need to be put in social situations. we are lucky some autistic children can't even go on their front porch without panic attacks, here we take her out to eat, and as long as the resturant is not over crowded(we never go to friday's,applebees and so on)she is really good and almost communicates well. even if i do order from deepdiscountdvd not all of it is workout vids. i have ordered plenty of movies for viola. and as far as i knew entertainment was considered an okay expense from SSI, just don't over do it.

There are some other little charges on there like when we went to play mini golf and go on go-karts but we didn't have enough cash on us. There were also some charges for amazon when i ordered social stories books and books about autism b/c we were having a difficult time with the discpline.(how do you go about discplining a child if maybe she doesn't understand her surroundings).

sorry this is so long,but like i said this ensures anything viola will need she is covered under SSI medicaid. if they cut a $100 or 2 i will figure it out. although i really don't want to go back to work b/c i can't afford the child care and there is no facilities here to take care of her needs. i feel its important for me to stay home and work with her inbetween therapies.i have always been honest and prompt with any changes in income and living arrangments with them, so i hope that accounts for something. cross my fingers that everything will good. thanks for letting me get this out. i really have no one to talk to right now and it was just eating me up.

kassia

When they discover the center of the universe, a lot of people will be
disappointed to discover they are not it -- Bernard Bailey
 
I hope it all works out for you, and you should never have to worry about something like medical coverage and so on. I don't want to get on my soapbox about how I feel this country needs universal health coverage. I feel for you and your problems.
 
thanks caitlin and jes,

i am just hoping to hang onto SSI until we hear some word about the Developmental Disability Waiver. Its a form of medicaid that will cover so much more and its not based on income. It's along waiting list but the good news is its take one review to find out most ppl are not eligble(this is based on severity of disability and not income) or they no longer live in the state. Things like this make the process faster for those that are hanging at the end of their rope. We have another family that has been through this and they have been very helpful with their contacts.

I just feel that social security and services provided from were meant to help ppl, but instead the ppl that work there make is a nerve racking expierence. if it were up to me i would never want to go through with this but for some reason a higher power said "you shall have an autistic child and minimum income, now show me what you can do". then again it used to be easy to get but a few bad apples spoiled it for those that really need it. thanks for your kind words they are more of a help then you can imagine.

kassia
When they discover the center of the universe, a lot of people will be
disappointed to discover they are not it -- Bernard Bailey
 
I have a son with Asperger's Syndrome and I would consider it a crime if I didn't buy him DVDs, books, take him out to eat and for entertainment. These kids need this exposure instead of letting them hibernate away inside away from the world.

I hope the SSI people understand this and that your situation remains as it is. I'll put in a prayer for ya.
 
I agree with Elaine. I think you can justify most of your purchases, and it doesn't sound to me like you're spending money like a drunken sailor. I'm quite sure they've seen much worse! Is there any kind of support group or organization that you can call for advice. I would also check with your pediatrician--h/her office should be able to hook you up with a social worker, who in turn should be able to guide you through these kinds of situations. It's their job to help you find the services you need.

I'll keep you in my prayers. Hang in there. It sounds like you're doing a great job with your daughter.

Michele
 
hi michelle

i did email an specialist that we have recently started working with. she also is part of a service that provides advocates. i am sure she will pass my message along.all my doctors and therapist find that we do just fine, but you know government agencies. they don't want to here the gray areas its just black and white by the book facts. i might be worrying for nothing but i have seen such services ripped from ppl who needed it more then we do.

kassia

>I agree with Elaine. I think you can justify most of your
>purchases, and it doesn't sound to me like you're spending
>money like a drunken sailor. I'm quite sure they've seen much
>worse! Is there any kind of support group or organization that
>you can call for advice. I would also check with your
>pediatrician--h/her office should be able to hook you up with
>a social worker, who in turn should be able to guide you
>through these kinds of situations. It's their job to help you
>find the services you need.
>
>I'll keep you in my prayers. Hang in there. It sounds like
>you're doing a great job with your daughter.
>
>Michele


When they discover the center of the universe, a lot of people will be
disappointed to discover they are not it -- Bernard Bailey
 
elaine,
you should see the difference. if we take viola to the mall she will meltdown b/c of the noise and the amount of ppl. the therapist tried to explain how it would look to her, kind of like tunnel vision and disorted views.when we go out to eat or even to kroger supermarket, she is so good and really opens up with her speech. she is not at 6 year old level but its like a glimmer of hope when she uses a full sentence. we don't do much with ourselves so our DVD's is our thing. hubby and i love b-movies and horror and we pick up her scooby doo's and spongebob movies. not to mention the book collection this child has. we usually hit the thrift store 2-3x's a month and literally spend $20-30 on books alone. the speech therapist showed me how to use books to help with her speech. i think it helps.

anyway i am rambling LOL but you would know what its like when you see that little step towards progress.every centimeter counts here.whenever i get my dang scanner working i have to get pics up of all of us. she is like a little angel with her devil horns tucked under the halo LOL.
kassia

When they discover the center of the universe, a lot of people will be
disappointed to discover they are not it -- Bernard Bailey
 
Kassia-

I'm not sure what your situation is exactly, but have you ever heard of a supplemental needs trust? It's a trust that can be established by a parent with the parent's funds that supplements rather than supplants governmental benefits for a disabled person. The law was passed by federal statute in 1993, and every state has its own version. As long as the trustee pays for items and services directly to the sellers, and no money ever comes into the hands of the disabled person, you can buy her all the luxuries you want without affecting her governmental benefits. Does this sound like what you need? If you tell me what state you live in, I can help you find a lawyer who can establish such a trust for you.

-Nancy
 
you receive a government handout on the taxpayers backs, spend money on eating out and dvds and you think its unfair that they might decide that you have enough disposable income to pay for your own daughter? and you think that would be unjust in some way?



unbelievable
 
Oh for heavens sakes!!! Listen, I'm a card carrying member of the republican party, and even I don't have a problem with this. I'm also a nurse, the wife of a pediatric neurologist, and the aunt to a child with autism. I think I've learned to see the gray streak that runs between the black and white. For crying out loud, it's not like she's buying lottery tickets, a case of beer and cartons of cigarettes. She said she was buying DVD's for her child. And we all need to eat out once in awhile. I couldn't function in life if I didn't have a few simple pleasures now and then, and parents of these special needs children have very few pleasures indeed! She didn't say she was dining at Escoffier.

Michele
 
I have never heard of this. We live in Virginia.

kassia
When they discover the center of the universe, a lot of people will be
disappointed to discover they are not it -- Bernard Bailey
 
And Michele, the SSI is so small it's ridiculous. Disabled adults who try to live on SSI can barely eat, let alone pay rent. The main reason for having SSI is that it qualfies you for Medicaid. And most average families with severely disabled children cannot possibly survive without Medicaid, which pays for the much-needed medical expenses.

I think this Dana person is just a troublemaker who shows up from time to time to try to stir things up. I think the best thing to do is to ignore her and she'll go away.

-Nancy
 
i don;t think you understand what i meant. viola's check and hubby's check all go into the same account. and they are looking at ALL charges no matter whether we used the social security or his paycheck. what we do with his paycheck is not anybody's business but what we do with the SSI is their business and i understand that. i just don't want them to think the money we use is from her check for these luxeries. her check is for her therapy items NOT covered under insurance or any other of her needs like rent,food,clothing and entertainment. and i really don't care if i get $500 or $5 a month it was the insurance i was more worried about losing.

as for handouts, i can understand your opinion(and thoroughly respect it) but i had to quit my job, and sell my property all stocks and accounts just so i can get insurance for viola. these therapies cost $1000 + per week and hubby and i only made around $32,000 year combined, which was not enough to pay for this and too much for any kind of insurance,even the new working families state insurance where you pay a portion of the bills. like i stated in earlier post we don't do much and dvds are our thing. whatever we buy for her is from HER check b/c its in HER name not mine. i am just the one who is allowed to cash it and use it for her.i can see how this came off but believe me i am not out there spending every last dime on dvds or dinners out. i am just saying that's how it looks when we combine all the money in one account and i don't want them to think that this is what we do with the money they give.

kassia


When they discover the center of the universe, a lot of people will be
disappointed to discover they are not it -- Bernard Bailey
 
she is 6. i applied for the DD waiver in this state but it is a wait.that cover medical services and sometimes things like therapy items at home which i buy on my own.

kassia
When they discover the center of the universe, a lot of people will be
disappointed to discover they are not it -- Bernard Bailey
 
! She didn't say
>she was dining at Escoffier.
>
>Michele

LOL no, no viola loves chinese food. hot and sour soup is her absolute favorite. if i were anygood at cooking i could probably be able to whip it up for her at home. but even with hubby as a chef his two unmastered cooking styles are chinese and french. she is a picky eater so that fact she like chinese and thai is a shocking thing.

kassia


When they discover the center of the universe, a lot of people will be
disappointed to discover they are not it -- Bernard Bailey
 
Kassia,

I don't know much about these things, but perhaps if you can demonstrate your personal income and produce receipts, there shouldn't be an issue. Take care and try not to worry.

Michele
 
many of the online purchaes i can justify no problem just printing my order history. its the trips to wal-mart say when i buy a new exercise ball which is the similar to the ones they use in therapy. books i use as part of speech therapy. i was lucky to have such great therapist that helped me to learn what i need to do at home. just when you do it out of your own pocket you try to stretch it far,i should have kept a tighter hold on those recipets. i think from now on when i need a new ball for her or something like that i should get it online so i will always be able to save and print it on the puter. thanks for the idea michelle!!and all of you for your ideas and input.

kassia


>Kassia,
>
>I don't know much about these things, but perhaps if you can
>demonstrate your personal income and produce receipts, there
>shouldn't be an issue. Take care and try not to worry.
>
>Michele


When they discover the center of the universe, a lot of people will be
disappointed to discover they are not it -- Bernard Bailey
 
You must log in or register to reply here.

Our Newsletter

Get awesome content delivered straight to your inbox.

Top