Jaslisco.(update)....SSDI questions...

February 27, 2007

Hi everyone...It's been awhile since I have been able to post.

Things have been really crazy and I started back to work full-time,

crazy, I know but we need the money.Jalisco is still in the hospital

(dob 11/15/06) he is still on the vent and the drs are telling me

that since he keeps failing off the vent he will be sent home on it

but I don't know exactly when. They say that he will be vent

dependent for months, possibly years and they are trying to get me

prepared for that...They have tried coaxing me into placing him into

an 'assisted facility', a nursing home for babies..I have refused

and they stated my other option was home nursing care provided there

are nurses available in my area..I was told that since he will be on

a vent I qualify for anywhere from 16-24 hours of nursing care...I

would like to be home with him during this time but like I said

before, with our finances, we just won't be able to make it if I

stop working...I know that he will qualify for SSD and have been

told he will could get around 600 month but I need to know what is

the maximum a family can make to be eligible for that benefit make

and still receive the SSD. I work full time and so does my husband

but he works outside and sometimes its not very dependable income. I

commute and it's really taking a toll on me. I have a 14 month old

as well...I just want to stay home with my son and daughter..I will

quit my job in a second if I knew there was a way that we could

manage financially...any comments ideas would be

appreciated....Thanks...

February 27, 2007

I just wanted to let you know that we had a similar situation and

that while many people can offer advice, only you can make this

decision and I am sure you will do what is right for your family. I'm

not sure where you live but I can tell you about Florida. The max

amount you can make for SSI payments is ridiculously low, something

like $33k a year. I know that if you qualify for SSI you will

automatically qualify for medicaid (that's what they told me in

Florida). They also told me that if you qualify for SSI you will

qualify for WIC (for formula). Even if you qualify for SSI you may

not get the whole $600. We barely qualify for SSI and get a couple

hundred to help for my daughters care. (I left my job and stay at

home). Try to make a cost benefit analysis of what it costs you to

work and what it will cost to stay home. We had 24 hour nursing and

we had some good nurses but we had some bad ones. I guess you need to

meet the nurses and make sure you feel comfortable leaving them at

home with your child. We had some nurses who gave the wrong meds,

fell asleep, didn't show up, etc...We did have a few who were

wonderful. It will be bumpy when he gets home but with time

everything will smooth out. Good luck making this decision. Your

heart is in the right place and everything will work out as it

should.

- M

mother of Anabelle, 14 months

February 27, 2007

In North Carolina I can tell you that a family of 4 must make less

than $36,000 to qualify for SSI. I too had to return to work as

financially after 2 years of being home with Jillyan we could not

make it without additional income. We were immediately rejected for

SSI as they take into account 401K, vehicles, etc. Also, my

husband's income alone shot us over the dollar limit.

I hired an attorney to attempt to appeal the denial. Our attorney

first requested med releases for of Jillyan's doctors. He needed to

prove that Jillyan would be in life long care with her parents.

After all records were obtained we applied again -- got rejected

again. He then filed an appeal and went before a judge with all of

her records showing how she would never be on her own and that

medically she would require specialists, therapy, etc. This is a

loop hole in the current system and one day it will probably get

closed according to our attorney.

Based upon this the judge granted us SSI. Now due to the fact that

we made " too much money " (which I still laugh about as I had piles of

medical bills on top of normal expenses) we only get $30 per month

for Jillyan. In NC you have to get SSI to get Medicaid. Once I got

the SSI Medicaid automatically kicked in and they made it retro --

can't remember how many years they went back, but I had to contact

all of the docs I paid out of pocket and have them refile and I got

that money back. In the long run we were after the medicaid as PT,

OT and speech only allow 20 visits per year and Jillyan goes once per

week to all three.

It was not a quick process but in the end the $1800 I paid the

attorney saves me money every year on her care.

Huggins

Mom to Hailey (almost 10) and Jillyan (5 - Charger)

>

> Hi everyone...It's been awhile since I have been able to post.

> Things have been really crazy and I started back to work full-time,

> crazy, I know but we need the money.Jalisco is still in the

hospital

> (dob 11/15/06) he is still on the vent and the drs are telling me

> that since he keeps failing off the vent he will be sent home on it

> but I don't know exactly when. They say that he will be vent

> dependent for months, possibly years and they are trying to get me

> prepared for that...They have tried coaxing me into placing him

into

> an 'assisted facility', a nursing home for babies..I have refused

> and they stated my other option was home nursing care provided

there

> are nurses available in my area..I was told that since he will be

on

> a vent I qualify for anywhere from 16-24 hours of nursing care...I

> would like to be home with him during this time but like I said

> before, with our finances, we just won't be able to make it if I

> stop working...I know that he will qualify for SSD and have been

> told he will could get around 600 month but I need to know what is

> the maximum a family can make to be eligible for that benefit make

> and still receive the SSD. I work full time and so does my husband

> but he works outside and sometimes its not very dependable income.

I

> commute and it's really taking a toll on me. I have a 14 month old

> as well...I just want to stay home with my son and daughter..I will

> quit my job in a second if I knew there was a way that we could

> manage financially...any comments ideas would be

> appreciated....Thanks...

>

February 28, 2007

Hi! Glad to hear there's conversation about Jalisco getting out of

the hospital. You have some tough decisions but it will work out!

What was said about FL and NC is true in IL too. If you call the 800

number for SS Administration, if you ask long enough they'll tell

you the income guidelines. In IL, if you get $1 in SSI you qualify

for Medicaid and if you have a medical card you qualify for WIC. I

believe the monthly max for a family of 5 is $3608/mo or $43,296.

Have you asked the social worker at the hospital about the

applicaion process? When Rasha was in after her birth, our hospital

had a rep from the local office come to fill out the apps there. It

helped get the ball rolling because they send the paperwork back to

the state to make the determination. I did it because I wanted it

done and documented that she qualified in the event something

happened to me and her dad I didn't want anyone else or eventually

Rasha herself to have to deal with running around and producing

documents, etc. Also, I think it will be easier when she's an adult

that this is already done.

Sorry for the length!!

Janay

Rasha's Mom

>

> I just wanted to let you know that we had a similar situation and

> that while many people can offer advice, only you can make this

> decision and I am sure you will do what is right for your family.

I'm

> not sure where you live but I can tell you about Florida. The max

> amount you can make for SSI payments is ridiculously low,

something

> like $33k a year. I know that if you qualify for SSI you will

> automatically qualify for medicaid (that's what they told me in

> Florida). They also told me that if you qualify for SSI you will

> qualify for WIC (for formula). Even if you qualify for SSI you may

> not get the whole $600. We barely qualify for SSI and get a couple

> hundred to help for my daughters care. (I left my job and stay at

> home). Try to make a cost benefit analysis of what it costs you to

> work and what it will cost to stay home. We had 24 hour nursing

and

> we had some good nurses but we had some bad ones. I guess you need

to

> meet the nurses and make sure you feel comfortable leaving them at

> home with your child. We had some nurses who gave the wrong meds,

> fell asleep, didn't show up, etc...We did have a few who were

> wonderful. It will be bumpy when he gets home but with time

> everything will smooth out. Good luck making this decision. Your

> heart is in the right place and everything will work out as it

> should.

>

> - M

> mother of Anabelle, 14 months

>

February 28, 2007

home nursing is best ay tell them that many chargders on here with vents and

trachs get home nursed and not put into homes that is jsut ridculous

>

> Hi! Glad to hear there's conversation about Jalisco getting out of

> the hospital. You have some tough decisions but it will work out!

> What was said about FL and NC is true in IL too. If you call the 800

> number for SS Administration, if you ask long enough they'll tell

> you the income guidelines. In IL, if you get $1 in SSI you qualify

> for Medicaid and if you have a medical card you qualify for WIC. I

> believe the monthly max for a family of 5 is $3608/mo or $43,296.

> Have you asked the social worker at the hospital about the

> applicaion process? When Rasha was in after her birth, our hospital

> had a rep from the local office come to fill out the apps there. It

> helped get the ball rolling because they send the paperwork back to

> the state to make the determination. I did it because I wanted it

> done and documented that she qualified in the event something

> happened to me and her dad I didn't want anyone else or eventually

> Rasha herself to have to deal with running around and producing

> documents, etc. Also, I think it will be easier when she's an adult

> that this is already done.

>

> Sorry for the length!!

>

> Janay

> Rasha's Mom

>

> >

> > I just wanted to let you know that we had a similar situation and

> > that while many people can offer advice, only you can make this

> > decision and I am sure you will do what is right for your family.

> I'm

> > not sure where you live but I can tell you about Florida. The max

> > amount you can make for SSI payments is ridiculously low,

> something

> > like $33k a year. I know that if you qualify for SSI you will

> > automatically qualify for medicaid (that's what they told me in

> > Florida). They also told me that if you qualify for SSI you will

> > qualify for WIC (for formula). Even if you qualify for SSI you may

> > not get the whole $600. We barely qualify for SSI and get a couple

> > hundred to help for my daughters care. (I left my job and stay at

> > home). Try to make a cost benefit analysis of what it costs you to

> > work and what it will cost to stay home. We had 24 hour nursing

> and

> > we had some good nurses but we had some bad ones. I guess you need

> to

> > meet the nurses and make sure you feel comfortable leaving them at

> > home with your child. We had some nurses who gave the wrong meds,

> > fell asleep, didn't show up, etc...We did have a few who were

> > wonderful. It will be bumpy when he gets home but with time

> > everything will smooth out. Good luck making this decision. Your

> > heart is in the right place and everything will work out as it

> > should.

> >

> > - M

> > mother of Anabelle, 14 months

> >

>

February 28, 2007

-

In IL, you can call IL Lifespan at 1- or visit their website

www.illinoislifespan.org <http://www.illinoislifespan.org/> for help with

these kinds of questions - anything disability related. If they don't have

the answers themselves, they will direct you to the resource with the

support and/or answers you need.

Michele W

Aubrie's mom

February 28, 2007

Hi,

I dont know if this will help i live in NY and my husband makes a

little over $1,200 every 2 weeks and gets ssdi and gets $563

a month thats the only way i can stay home with him hope this helps

a little

mommy to {18 month old CHARGEr}

>

> Hi everyone...It's been awhile since I have been able to post.

> Things have been really crazy and I started back to work full-

time,

> crazy, I know but we need the money.Jalisco is still in the

hospital

> (dob 11/15/06) he is still on the vent and the drs are telling me

> that since he keeps failing off the vent he will be sent home on

it