SSI

May 22, 2002

In a message dated 5/21/02 11:14:50 PM Pacific Daylight Time,

writes:

> you can still get SSI with mr waiver-medicaid at least in iowa you can.

>

Really? Never even thought about trying? Is this a monthly payment or

something? Thought they had to be 18?

May 22, 2002

In a message dated 5/22/02 6:08:38 AM Pacific Daylight Time, Ltb3105@...

writes:

<< you can still get SSI with mr waiver-medicaid at least in iowa you can.

>

Really? Never even thought about trying? Is this a monthly payment or

something? Thought they had to be 18?

>>

,

Seth has the Medicaid waiver, but not SSI. But in a couple of months, when

dh retires, our income might make him eligible for SSI. We'll apply again

then.

Gail :-)

May 22, 2002

No, it depends on your family income, we are making too much again now so we

will probably get an overpayment note etc, but see even if they cancel his

SSi until his need agian they cant ake away his medcaid cause of his MR

Waiver and when he is 18 they goi by his income for the amount of SSI

benefits in addition to his others,we can charge him rent etc and its all

legal, so he can stay with us and still receive benefits. Right now we are

working on additonal hours of medcaid hours and MR HHA hours in addtion to

his full scl and respite he allready receives -----starting this fall he is

getting tooo old to go to day care and grandparents dont really have the time

or energy let alone the pateince to deal with him. soooo this fall they will

come and hlep him ready for school etc, and then the usual scl after school

for a couple hours, and then come next summer we will include the mrhha to

help watch him during the day cause he will be going on 12yrs next summer

(turning 11 this summer) and i wont send him to daycare with a bunch of

babies, most 12yr olds dont go to daycare so he should get help/ us too so he

can stay home and do his usual summer activities such as swimming etc.

shawna.

May 22, 2002

-Before age 18, getting SSI is dependent on the income of the parents.

After 18, a person who qualifies is eligible even if s/he lives with his/her

parents. AND if you charge your child rent (as you should) the child will

get the full amount allowed.

Now as to medicaide waiver - one can qualify for SSI and not get it because

of income, but still be eligible for waiver funding. There are several

different waiver programs. SOme are not income qualified, some are. For

example, my son gets Person/Family Directed waiver funding for respite (30

days a year in my county), temporary respite (up to 23 hrs a day)amount

dependent on need - we get 12 hours a month, habilitation hours (we get

about 48 hours a month - again determined by need). Of course I have been

assigned and funded for those services. The trick is getting staff for any

of it except that I use most of the overnight respite for Camp year round.

There are other things one can obtain through waiver. We have also applied

for Family Driven Funds - an amount that varies from year to year for

concrete THINGS. We asked for money for a new Rifton bike. We will see if

there is money for that in the new fiscal year.

Every state has slightly different programs and I hear that some states opt

out altogether. A few years ago we tried to compile a list of what states

had what benefits, but I think in the end we only had 12 states.

Really worth learning about.

Sara

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May 22, 2002

At 10:11 PM 5/22/2002 -0400, you wrote:

>

>Every state has slightly different programs and I hear that some states opt

>out altogether.

Very good synopsis, Sara. Oregon opts out all together. In other words, we

have no waiver program here in Oregon. YOu have to qualify for SSI to get

any medical assistance.

j

May 23, 2002

In a message dated 5/22/02 6:57:50 PM Pacific Daylight Time,

writes:

> , our income might make him eligible for SSI

If it goes by household income, forget it....we'd never qualify! The only

reason was approved for Medicaid is because it's a special disability

waiver, BUT, you MUST have an MR dx, if you're physically handicapped but not

mentally, you can't get approved! This is a special waiver approved based on

child's MR dx, not income, not anything else!

May 23, 2002

In a message dated 5/22/02 10:18:17 PM Eastern Daylight Time,

pastmidvale@... writes:

> We have also applied

> for Family Driven Funds - an amount that varies from year to year for

> concrete THINGS. We asked for money for a new Rifton bike. We will see if

> there is money for that in the new fiscal year.

Yes Sara. Here in PHilly I get $600 a year (although they upped it to 8,

I'm waiting to hear about approval) which I cash out mostly as babysitting

money. Though they did pay for the Greenspan conference (250). The idea

is to fill out paperwork at the very beginning of their fiscal year; my

caseworker always calls me right away and schedules me to come in. We also

qualify for medical assistance under the waiver program and that pays for 120

pull-ups a month, and all her co-pays for doc visits as well as presciptions

(her reglan, zantac, and synthroid)

Donna

May 23, 2002

--Even Family Driven Money in the same state is different. I can possibly

get $1200 but no cash for anything.

And we also get Medicaid which pays co-pays and doctor visits that our

primary insurance won't pay and all his meds, if I can't get them at the

Army base .

Pennsylvania has more benefits then many other states if one is willing to

jump through the necessary hoops, even if it varies some from county to

county. I must be honest and say that we deliberately looked for employment

and moved from Virginia to PA because of the additional help Elie could get

here. Of course the problems with " That Teacher " encouraged us to look in

another place.

Sara, the Lemonade drinker.

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March 29, 2003

-

We did this. We applied when Blake was born. He qualified because of the

DS, but NOT financially. They told us SPECIFICALLY that he would be

eligible in the future, w/o reinvestigation of his disability if our

finances changed.

2 years later when we did apply they reinvestigated his eligibilty. I told

them they did not need to do this. I explained just what you said below,

and asked for a supervisor. They REINVESTIGATED the disability claim

anyway.

So what did I do wrong? And what should I have done differently? It WAS a

phone interview because of his medical issues.

Schulte

> Also, for those with babies whose income is above the guidelines, go ahead

and apply now. Your child will be found eligible based on disability, but

not eligible financially. Keep that letter and use it in the future (right

before your child turns 18 or your finances change). That letter should be

all that is required to get SSI in the future.

March 29, 2003

Did you show them the letter about qualifying medically but not financially? I

strongly suggest to go in person to apply first..and bring a copy of all the

documentation. The phone interview will be scheduled, but you will have all

your documentation presented, which makes the interview go quicker.

Re: SSI

-

We did this. We applied when Blake was born. He qualified because of the

DS, but NOT financially. They told us SPECIFICALLY that he would be

eligible in the future, w/o reinvestigation of his disability if our

finances changed.

2 years later when we did apply they reinvestigated his eligibilty. I told

them they did not need to do this. I explained just what you said below,

and asked for a supervisor. They REINVESTIGATED the disability claim

anyway.

So what did I do wrong? And what should I have done differently? It WAS a

phone interview because of his medical issues.

Schulte

> Also, for those with babies whose income is above the guidelines, go ahead

and apply now. Your child will be found eligible based on disability, but

not eligible financially. Keep that letter and use it in the future (right

before your child turns 18 or your finances change). That letter should be

all that is required to get SSI in the future.

March 29, 2003

I told them Blake had been approved medically and offered to send documentation.

They didn't want it. They argued with me that he would have to be redetermined.

At the time I thought, " well, maybe the laws have changed? " I basicly went

along with what they wanted because it seemed simpler than fighting it, and I

knew either way he would be approved.

Schulte

Re: SSI

-

We did this. We applied when Blake was born. He qualified because of the

DS, but NOT financially. They told us SPECIFICALLY that he would be

eligible in the future, w/o reinvestigation of his disability if our

finances changed.

2 years later when we did apply they reinvestigated his eligibilty. I told

them they did not need to do this. I explained just what you said below,

and asked for a supervisor. They REINVESTIGATED the disability claim

anyway.

So what did I do wrong? And what should I have done differently? It WAS a

phone interview because of his medical issues.

Schulte

> Also, for those with babies whose income is above the guidelines, go ahead

and apply now. Your child will be found eligible based on disability, but

not eligible financially. Keep that letter and use it in the future (right

before your child turns 18 or your finances change). That letter should be

all that is required to get SSI in the future.

March 29, 2003

We had the same problem. We applied when she was an infant, she qualified

medically and developmentally, but not financially. Told us to come back in

18 yrs! Spent 2 hours at their office, just to be told that.

Kris, mom to Sierra 4

CAVC/TOF/PS/MS/Mod-severe mitral regurg/enlarged heart/LA compresses

esophagus/silent aspiration/stridor/GERD/slow motility/low

wbc/hypothyroidism/MDS

14 ADD; 10 ADHD

March 30, 2003

They REINVESTIGATED the disability claim anyway. So what did I do wrong?

And what should I have done differently?

_____________

,

You did nothing wrong! From our years of experience with SSI, we learned

right off the bat that you will not get two people in the same office to

agree on anything as there are no written laws or rules involved! Now you

can argue with me on that but believe me we have read over all their

material in the law and it does not cover half the things they make up!

Also, if you call the 800 number, you will get an entirely different take on

a question that what your local office says!

I always ask for a copy of the written law, policy, whatever that they are

basing their decisions on and only one time in all these years have they

been able to send me one and it had NOTHING to do with the subject matter!

It only took over a year after asking for formal review to have them concede

this! Since is 24 yrs old, her SSI is based on her income which

changes with each paycheck and what a problem when there is the occasional

three paychecks in one month!

It seriously would be a full time job to try to get them to be accountable

for their actions!

By the way, we never had to turn in proof of having Down syndrome,

in five different states it has never been required!

Rejoice!

Amie

March 31, 2003

I just got off the phone with the disability examiner assigned to my SSI

application. I quoted the following to them from the brochure I was sent when

initially applying:

" Benefits for Children with Disabilities "

p. 9 - " Following are some of the disability categories in which we can presume

your child is disabled and make immediate SSI payments: HIV, Blindness,

Deafness, Cerebral Palsy, Down Syndrome, Muscular Dystrophy, Mental Retardation,

Diabetes, & Amputation. "

I asked why I had to be redetermined if Blake had DS, and shouldn't a Karyotype

be enough? She said yes it should be and is....HOWEVER, they have each case

redetermined anyway because of changes each year in medical advances.

She used the example of amputees. She said it was once believed that amputees

would always be disabled, but since prosthetics (sp?) had become so advanced

they determine each case individually now. I told her there is still no cure

for down syndrome and that they don't " outgrow " it. She said she knew that and

was aproving my case ASAP.

BUT that it would be reviewed AGAIN in 3 years again, just to make sure there

was still no cure, or medical advances made for the medical effects of DS.

Schulte

April 1, 2003

Hi,

I'm still new to all of this. However, our social worker from our early on

program told us to apply for SSI.

I had my husband call and they told us that if we have more than 3,000 in the

bank or if our income a certain amount of money then our son is not eligible.

However, they still wanted us to come to the office to fill out paperwork to

see if he will qualify. I'm not sitting there for hours just to be told that

I don't qualify. I have spoke to other parents and were told the same thing.

They even said that the person on the phone told them that it was only for

low income families.

I'm really frustrated myself. My husband works, while I stay at home with

Owen so we only have one income. SSI would be beneficial for therapy, but no

we don't qualify because of income. I hate to say this but my husband

doesn't make that much. And plus were under 30, so we don't have that much

money. lol. I know people do not have a child with a disability and are

getting SSI who are messing with the system, basically lieing about things to

get SSI. It is upsetting.

Tonya mom to Owen 11 months

April 1, 2003

The maximum income allowed has other factors such as family size, the state you

live in, and earned vs. unearned income.

Schulte

Re: Re:SSI

Hi,

I'm still new to all of this. However, our social worker from our early on

program told us to apply for SSI.

I had my husband call and they told us that if we have more than 3,000 in the

bank or if our income a certain amount of money then our son is not eligible.

However, they still wanted us to come to the office to fill out paperwork to see

if he will qualify. I'm not sitting there for hours just to be told that I

don't qualify. I have spoke to other parents and were told the same thing.

They even said that the person on the phone told them that it was only for low

income families.

I'm really frustrated myself. My husband works, while I stay at home with

Owen so we only have one income. SSI would be beneficial for therapy, but no we

don't qualify because of income. I hate to say this but my husband doesn't make

that much. And plus were under 30, so we don't have that much money. lol. I

know people do not have a child with a disability and are getting SSI who are

messing with the system, basically lieing about things to get SSI. It is

upsetting.

Tonya mom to Owen 11 months

June 3, 2003

In a message dated 6/3/2003 4:35:24 AM Central Standard Time,

writes:

>

> http://policy.ssa.gov/erm/rules.nsf/2f68da0351867ced85256b41006b1541/06d0c15

> >f4e59570285256d2400549279?OpenDocument

>

I can't get this work and I really would like to see what it says!! any

other suggestions?

Take Care and God Bless,

Mommy to Annette 13 (CP, developmental delay, g-tube, Selective Antibody

Deficiency, asthma, HIV+, GER), 7 (B-Cell dysfunction, brain tumor

survivor, port-a-cath, trialing off of IVIG) and Trayvon 4 (complex congenital

heart

defects, asplenia, severe GER, strokes x 2, malrotated intestine) All

wonderful and sent from God.

www.caringbridge.com/ny/my2angels

June 29, 2003

You can also pay them back 10.00 a month till it's paid off.We are doing

this right now with our Kristi.They just keep it out of her check every

month 'till it's paid off.Most people can pay 10.00.If you can't offer

then 5.00.I'm sure they will say ok.Mom of Kristi and

( non ds but has Cry of the Cat syndrome which is a real syndrome)

wife of

July 24, 2003

How much do you make?

Have you applied for medicaid?

July 24, 2003

How much do you make?

Have you applied for medicaid?

July 24, 2003

In a message dated 7/24/2003 11:44:01 AM Central Daylight Time,

elopez@... writes:

> I did not know that they could deduct the insurance from my gross or I

> would have told them to do so the first time I applied.

>

They don't normally do this. The only decutino they are supposed to give you

is one for having another child, but they take your entire gross pay into

account. Probably what will happen is that when you turn in your pay stubs they

will look at it then and if you make too much money you will not get a check or

a lower check that month. When we made over 2600 gross per month we would get

a check for 360.00 dollars. if we made 3000 a month ( one time we had three

holidays and a five week pay period and we went over 3000) we got less than

$20. If we make less than 2600 we get 536 a month

SSI goes on a month ot month basis, so if you get a raise or work even a

little overtime your benefits can be reduced. What you earn in July will

determine

what benefit you get for September.

July 24, 2003

In a message dated 7/24/2003 11:44:01 AM Central Daylight Time,

elopez@... writes:

> I did not know that they could deduct the insurance from my gross or I

> would have told them to do so the first time I applied.

>

They don't normally do this. The only decutino they are supposed to give you

is one for having another child, but they take your entire gross pay into

account. Probably what will happen is that when you turn in your pay stubs they

will look at it then and if you make too much money you will not get a check or

a lower check that month. When we made over 2600 gross per month we would get

a check for 360.00 dollars. if we made 3000 a month ( one time we had three

holidays and a five week pay period and we went over 3000) we got less than

$20. If we make less than 2600 we get 536 a month

SSI goes on a month ot month basis, so if you get a raise or work even a

little overtime your benefits can be reduced. What you earn in July will

determine

what benefit you get for September.

July 24, 2003

Yes, I suppose we can drug our children to the point where they no longer

have any outbursts, for some this is their only means of communication. We can

basically take their spontaneous speech/communication away totally and silence

them just for the sake of keeping peace and order in the classroom. This

principal and v.p. sound like very caring folks. Do they attend autism training

sessions? If they do, they need to be encouraged to attend more.

I'm sorry but I don't know anything about SSI as I have been told that my

husband earns too much (never mind the high medical bills we are left to pay).

In a message dated 7/24/03 10:51:13 AM Eastern Daylight Time,

marcia_witbeck@... writes:

>

> Hi, I live near Houston and went to the SSI office to find out about getting

>

> my son qualified, since he has asberger's syndrome, I am a single parent and

>

> his meds, even with just the copays is really hard on us financially. They

> laughed me out of the office, because my gross pay (before I pay out all the

>

> medical insurance etc for myself and my kids) was too high.

>

> Will he never qualify for SSI because I make too much? I mean, come on I am

> just a teacher....he is on risperdal, topomax, depakote and concerta every

> day. He doesn't finction without his meds. I am just trying to reintegrate

> him into the regular classroom. He goes to my school where I work and the

> principal and vice principals were very accusatory to me about not being

> able to handle his outbursts! He just got a final diagonosis from school

> this past spring, confirming asbergers. My insurance would not evaluate him

> for that because they said school would do it.

>

> Any thoughts?

>

> Thanks,

>

> Marcia

July 24, 2003