Re: SSI Appt

[Guest guest]

In a message dated 11/17/2004 4:27:48 PM Eastern Standard Time,

amyjo4181@... writes:

We have a telephone application on Friday for Nick for SSI. Any tips or

suggestions would be appreciated! Thanks

The telephone interview is just the first step. They'll ask you lots of

questions, mostly to determine if you qualify financially, then they will send

you a ton of paperwork to fill out (be very exact with those, and don't sugar

coat ANYTHING, list every single thing possible!). You will sign a ton of

medical releases so they can get his records. Then you will most likely wait at

least 6 months (they say six months, but it took 9 both times I filed for

Kody) before you hear from them again. Every time he's sick again or

hospitalized

or sent ot the ER or given a new diagnosis during that time call them

(you'll have a case manager and phone number to call) and let them know the new

info. Also you will be turned down. Expect that. They turn everyone down the

first two times you file. Appeal the determination immediately, and if I were

to

do it again, I'd have had a lawyer at the first denial. We found a local

lawyer that specializes in SSI cases that was willing to take our case (it is

sometimes hard to find one willing to take a child's case, apparently it is

way harder to get it for a child than for an adult with the same disorder).

They may also decide to send your child to see their doctor (at their expense).

This upset me for two reasons, one, their doctor had never even seen a PI

kid and he was just a general practitioner so I didn't feel that their " expert "

was even qualified to make the determination and the second reason was

because the idiots wanted to take blood work to see if Kody was truly immune

deficient. What idiots. Yeah like a kid getting IVIG is going to show that in

blood work! Jeesh. Then they actually wanted me to take him off the IVIG to do

it!! At that point I told them that if I took Kody off IVIG just to satisfy

their curiosity and he got sick or heaven forbid died I would hold them legally

and morally responsible. Funny how they didn't suggest that again! LOL! But

we did have to see their doc. What a waste of our time. But we played their

game and did it anyway. After being denied over and over and then hiring a

lawyer our whole ordeal was 2 years long before we finally had a court

appearance. We talked to the judge for less than ten minutes and he said " this

is the

most compelling case I've ever seen! " and he pretty much approved Kody on the

spot. But it wasn't done yet because SSA sent the decision to judgmental

review!! So getting any money was delayed for another 6 months!! After all is

said and done, I'd say it is a HUGE pain in the butt that requires extreme

patience but in the end I'm glad we have it for Kody. I know his needs are

being

fully met now and there isn't the worry about him needing something either

medically or educationally and wondering where the money will come from to pay

for it. If you have any questions I'd be happy to answer them for you.

Dee, Mom to Kody, age 8.5, Di syndrome, CVID, learning disabled,

asthma, general anxiety disorder, animal lover and protector, Yughio expert and

chef extraordinaire. Also Mom to Arika, age 17, senioritis. Kaila, age 13,

allergies/asthma, queen of worry warts and perfectionists. Sami, age 10,

allergies/asthma, dyslexic, official family cheer team captain. Wife to ,

a

loving wonderful dad and hyperactive workaholic. Check out our website at:

www.geocities.com/schmidtzoo/SNAK

[Guest guest]

In a message dated 11/17/2004 6:56:24 PM Pacific Standard Time,

SNAKpackmomma@... writes:

then they will send

you a ton of paperwork to fill out (be very exact with those, and don't

sugar

coat ANYTHING, list every single thing possible!). You will sign a ton of

medical releases so they can get his records. Then you will most

Dee has given you some great advice. I'm just going to add one thing: make

and keep copies of all of the paperwork you fill out for them. You can refer

to it if necessary or when you have a review and need to fill out more

paperwork.

Sandi, Mom to , age 11. Immune Deficiency, Tetrology of Fallot,

Pulmonary Valve transplant, Mitral valve stenosis, chronic ear, nose and throat

infections, asthma, severe allergies (including meds), Carnitine deficiency,

GERD,

suspected Di syndrome.

[Guest guest]

I will also add to make sure you write down the date that you originally

applied because if and when it is approved payments will be retroactive to

that date. Keep all receipts of payment to meds, procedures, doctor

appointments, supplies from now on.

Ursula Holleman

mom to (11 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

[Guest guest]

In a message dated 11/18/2004 9:17:14 AM Eastern Standard Time,

amyjo4181@... writes:

Okay.. So the lady I already talked to yesterday said we do not qualify

financially. I said I didn't care and wanted to apply anyways.. she said well

if

you want a formal denial... (I then interrupted her and said I do) So, will

I have to go thru the same thing all over again? Will they even listen to

his medical issues if we make too much money? How many others were denied

financially first?

You do have to qualify financially. If you make too much money you won't

qualify for SSI no matter what. It is based on husband and wife income as well

as how many people are in the family (which is where we qualify, since we

have 4 kids). It isn't based on medical issues until AFTER you qualify

financially. You can go to the SSA website and they have a " prequalifying " test

thing,

you go through and answer the questions (includes income levels) and it will

then tell you if you qualify to apply for SSI. Now, you may make too much

money for SSI but there are other programs to help out, mostly insurance type

help. Kody received Children's Special Health Care Services insurance long

before we got SSI for him, the income levels to qualify are much higher and

depending on how much you make there may be a small monthly copay to pay with

it. It is NOT a CHIP program, and I believe it is also mentioned on the SSA

website, I'll look up the links and get them for you.

Dee, Mom to Kody, age 8.5, Di syndrome, CVID, learning disabled,

asthma, general anxiety disorder, animal lover and protector, Yughio expert and

chef extraordinaire. Also Mom to Arika, age 17, senioritis. Kaila, age 13,

allergies/asthma, queen of worry warts and perfectionists. Sami, age 10,

allergies/asthma, dyslexic, official family cheer team captain. Wife to ,

a

loving wonderful dad and hyperactive workaholic. Check out our website at:

www.geocities.com/schmidtzoo/SNAK

[Guest guest]

In a message dated 11/18/2004 9:17:22 AM Eastern Standard Time,

amyjo4181@... writes:

How many others were denied financially first?

When I called to inquire they asked me what out income was and they told me

we didn't qualify.

Janet, mom to Brittany, CVID, age 13

[Guest guest]

Okay.. So the lady I already talked to yesterday said we do not qualify

financially. I said I didn't care and wanted to apply anyways.. she said well

if you want a formal denial... (I then interrupted her and said I do) So, will

I have to go thru the same thing all over again? Will they even listen to his

medical issues if we make too much money? How many others were denied

financially first?

Amy, mom to:

, 22 months old. CVID, MSPI, GERD, Asthma.. On claritin, flovent,

xopenex, and IVIG every 4 weeks (Carimune NF)and on prophalatic antibiotics,

Allergic to Latex.

visit Nick's website:

http://www3.caringbridge.org/ne/nicholasb/<http://www3.caringbridge.org/ne/nicho\

lasb/>

The telephone interview is just the first step. They'll ask you lots of

questions, mostly to determine if you qualify financially, then they will

send

you a ton of paperwork to fill out (be very exact with those, and don't sugar

coat ANYTHING, list every single thing possible!).

[Guest guest]

EVERYONE (almost without exception) gets denied the first time.

Jill

Re: SSI Appt

In a message dated 11/18/2004 9:17:22 AM Eastern Standard Time,

amyjo4181@... writes:

How many others were denied financially first?

When I called to inquire they asked me what out income was and they told me

we didn't qualify.

Janet, mom to Brittany, CVID, age 13