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Andrew's Mommy
03-30-2009, 07:31 PM
Okay Hi everybody!

I always read and never post but im hoping that maybe someone can help me out. So my son has SSI and he gets medical through SSI.

My nursing agency requested that my son only get 40hrs a week of nursing (and they were never aware of a couple of medical issues my son has) because they thought regional center would still give me my respite which they wont.

So I want to petition or figure out who to talk to to see if i can get more hours for my son instead of just the 40hrs a week. I could just wait 3 more months and ask for more then but im told its harder to ask for more hours.

I called SSI they told me to talk to social services and find out who my sons case manager is....my son doesnt have a case manager all they do is "send out new medical cards", they tell me to call In Home Support Services (not sure what they do i know they can pay me to watch my son but not sure how to go about that) They tell me to talk to Medical medical say's "my son has SSI and they cant look into his records and i have to talk to SSI. I tried calling Medical EPSDT but they were not helpful at all and basically were upset that i called them. (might be because I have the voice of a twelve yr old.)

But I have been on the phone for about 5hrs now trying to get to someone who might know something. And i still have to deal with Apria who keeps charging me for everything instead of charging medical first.


If anyone who has SSI that has knowledge of this that would be wonderful if not it's okay im just going to try and figure out how to tell my husband that im bald from pulling all of my hair out.

ericnrosesmom
03-30-2009, 07:39 PM
SSI shouldn't have anything to do with how many nursing hours you get. I'd start by talking to your nursing agency.

suzanne2545
03-30-2009, 08:07 PM
No advice. But welcome to the posting side.

Second generation CHARGE!!! I smell a story!!! Care to share.

Good luck. I know there are some people on here who will have some really good advice.

llwilliams8
03-30-2009, 09:26 PM
It was our doctors that talked with our insurance and nursing company about the number of hours they think we need. We also got involved with a program called MDCP to give us respite hours. SSI had nothing to do with our nursing. Your doctor should recommend who to call and talk to. Also, once we got a nursing company and was able to get on Medicaid then the nursing company is the one who submitted everything to Medicaid to see how many hours they would approve us for. The nursing has to document exactly how much the nurses are doing when they are there to determine the number of hours you need. Good luck and hope you can get more hours!

LittleBee
03-30-2009, 09:55 PM
Welcome to the board! I am sorry I don't have any advice to share, but I can certainly understand your frustration. I think you are right to try to get things sorted out sooner rather than later, so they can't say - oh you got by with 40 hours so why would you need more.

My son Luke also has CHARGE. So I would love to know more about your baby boy! :) Also, if you want to share, I agree with Suzanne, and would like to hear about your son being the 2nd gen. to have CHARGE.

Louise D
03-30-2009, 09:57 PM
Do you have Cal Optma or CCS? If you do start with them.

Louise D

Andrew's Mommy
03-30-2009, 10:05 PM
No advice. But welcome to the posting side.

Second generation CHARGE!!! I smell a story!!! Care to share.

Good luck. I know there are some people on here who will have some really good advice.
I would love to share!! My little brother has CHARGE Syndrome his geneticist informed my mother that second generation CHARGE never happened. (she was worried that one of her three daughters might get pregnant and have a CHARGE baby)

So I get pregnant out pops my son. I get to see him and the first thing i think is how cute! he has my brothers ears but i didn't think it was CHARGE. My mother looks at him and compares him to my little brother when he was born, doesn't cross her mind that it's CHARGE.

Doctor's come in tell us they think its CHARGE. I Say but my little brother has CHARGE. Then they say ooh it must not be CHAGRE then we must have overlooked something.

Anyways i love this story and i could go on and on but it ended up being CHARGE. But what i weird is that my little brothers geneticist works at Ceder's right down the street from Kaiser and his geneticist is colleges with my son's geneticist. And i keep getting pestered about different blood work he wants done for my son.

Luckily ( i guess) i've been working with a trach since i was 14 so i wasn't too nervous about it. I was even able to show a thing or two to his nurses in the nicu.

My little brothers case is more sever than my son's he has coloboma in both eyes while my son only has it in one eye and my little brother has acute lung disease. My son doesn't have issue with his lungs but boy does he need to be suctioned. And then my son's heart issues are more sever than my little brothers


Sorry If i went on and on i just get excited telling my son's story.

Niff
03-30-2009, 10:11 PM
Like other posters said, SSI has nothing to do with your nursing hours.

I'm not sure if every state is set up the same, but here's how it works in NC. If you have SSI, you qualify for mediciad. With medicaid, you are assigned a case worker. This case worker must assign you to a primary care manager (ie: pediatrician). The pediatrician's name will be printed on your medicaid card. All billing has to go through the pediatricians office. So Apria should be requesting your pedi to bill, not send it to you. Also, the nursing agency here handles the request for hours. They make the initial request and if you want more, then they make a plea for more state XYZ medical conditions. Medicaid will typically only give X amount of hours for certain conditions. Most states have a community alternatives program that helps assist with providing nursing hours. It's a spin off of medicaid - same concept, different department.

My suggestion is first calling your local Department of Social Services. They should be able to give you someone who is in charge of your case. Then definitely talk with the Accounts Manager of your nursing agency. He/she should really be the person to inform you on who to contact about getting more hours. If he gives you a line about not knowing, it's total BS. That's his job.

LittleBee
03-30-2009, 10:14 PM
Thanks for sharing! It would be interesting to know if your son and brother share the same CHD7 mutation. Is that something you want to know - or do you already? Does anyone else in your family have any CHARGE characteristics? How old is your little brother now? Sorry to be so nosey. I am just always interested in other people's experience with CHARGE. I know our kiddos are different, but, of course, they have so much in common too. There is one mom on the CHARGE listserv who didn't know she had CHARGE until her son was born and diagnosed with it.

Baby1107
03-30-2009, 11:38 PM
Ok so lemme start by saying Welcome!!

We are pretty much in your situation. We have SSI, Medi-Cal & CCS. Do you have CCS yet? I am not sure why Regional Center is not helping you out BUT that is where we started from. Regional Center paid for 40 hours of "Respite" nursing UNTIL Medi-Cal kicked inm then MC had to pay them back. A RC nurse determined that A would need 16 hours a day based on his needs. We got the EPSDT waiver you mentioned by the Nursing Agency applying for it, not RC or SSI. We only use 12hrs per day of nursing currently.

As far as IHSS goes you can contact them, I was given that bit of info by the local SSI office. They will send someone out to your home a SW, this person will determine how many hours you qualify for. We only got 2.86 hours per day or 85 per month of "paramedical" care. It is a drop in the bucket, but it helps. My RC coordinator is AWESOME and helps me out ALL the time with navigating things.

PM me if you need any more info. It sounds like your nursing agency is not up to date on how things go...I am curious to know if it is M****? I would go back to RC and have them re-evaluate your nursing needs.

babysupermansmommy
03-30-2009, 11:48 PM
anthony gets medical threw ssi as well they have never had anything to do with his nursing hours.
the doctors have always been the ones to say how many hours we need. And that has always been 7 days a week 16 hours a day...but we have never been that way. useally we are staffed 6 days a week at 12 shifts.

i would contact your sons doctor and medical worker.

babysupermansmommy
03-30-2009, 11:52 PM
forgot to mention anthony gets 25 hours of respit threw a private caregiver ( my mom ) paid threw regional. He can get 25 hours of nursing paid threw them as well, but we have to find a nurse willing to do it who is contracted threw regional.

Andrew's Mommy
03-31-2009, 12:21 AM
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Andrew's Mommy
03-31-2009, 12:24 AM
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Andrew's Mommy
03-31-2009, 12:27 AM
My brother and son do not share the same CHD7 mutation. And he's had some blood work done to see if its a different chromosomes. I go see the geneticist on Thursday so i'm kind of excited.

Oh and ever since my mom and i found out my son had CHARGE we've been joking that everyone of my siblings has CHARGE characteristics. Like my ears are low and a little folded. My little sister has one nostril that's bigger than the other so we joke that she has choanal atresia and so forth.

My little brother will be turning eight this april. He is in a main stream 2nd grade class. And very smart. They actually moved his whole first grade class up with him to second grade so they could stay together and all of the kids in his class have picked up on sign. Its fun to watch.

LittleBee
03-31-2009, 08:59 AM
My brother and son do not share the same CHD7 mutation. And he's had some blood work done to see if its a different chromosomes. I go see the geneticist on Thursday so i'm kind of excited.

Now that is really rare - kind of like lightning striking twice. I know that an amnio can be done to check for CHARGE, but only for the specific mutation that has already occurred in the family. The doctors had already almost changed their minds about Luke having CHARGE (ie. they thought maybe he didn't afterall) when we got the positive genetic result back. I am glad that the genetic test is available, so that we can know for sure. From what I understand most of the genetic tests come back as a unique mutation. Whereas, Luke's came back as having been found before. My husband really wonders if the other person(people) with the same mutation have the same issues Luke has. Since CHARGE has such a broad spectrum of things that can be effected, it makes you curious as to why one person gets something, but another does not.

Oh and ever since my mom and i found out my son had CHARGE we've been joking that everyone of my siblings has CHARGE characteristics. Like my ears are low and a little folded. My little sister has one nostril that's bigger than the other so we joke that she has choanal atresia and so forth.

Yeah, we do that too. What I find interesting is that Luke looks so much like me, but when I compare him to other kids with CHARGE, I can clearly see the CHARGE features as well. Ears are the real give away, and mine don't stand out like his. But the other feature that seems universal to me is the eyes. I guess it is like with Down Syndrome, CHARGE kids eyes seem to be shaped the same - there is a certain roundness to them. It is not as easily identifiable to the general public, but I think that is just because there aren't as many people with CHARGE, so most people have never heard of it.

My little brother will be turning eight this april. He is in a main stream 2nd grade class. And very smart. They actually moved his whole first grade class up with him to second grade so they could stay together and all of the kids in his class have picked up on sign. Its fun to watch.

That is great to hear! My twins birthday is April 30th (they will be 7). Inclusion seems to be the prevalent mode of education these days, so I am so happy to hear about when it works. I hope Luke is as lucky as your brother. So far our local school and the kids there seem really accepting. We still have some time before Luke starts school, but my guess now is that his biggest challenge will be from his hearing loss. He is in a weird grey area right now where his hearing isn't so bad that he qualifies for a CI, but it might be bad enough that he can't hear speech even with his aids on either.