10 YEAR wait!

May 24, 2006

So EI met with me today and explained all the services they will be

getting. Mentioned something about Center for Citizens with

Disabilities or something along that matter. They can get a monthly

stipend which you know -- lets be real -- I would totally take

advantage of to put money aside for her for when she needs aids and is

over 18. Then they add THERE IS A 10 YEAR WAIT LIST!!!! My mouth fell

open. And I thought just the diagnosis was a wait!

May 25, 2006

In a message dated 5/24/2006 5:33:16 P.M. Eastern Daylight Time,

saraandchadd@... writes:

Then they add THERE IS A 10 YEAR WAIT LIST!!!! My mouth fell

open. And I thought just the diagnosis was a wait!

A 10-year wait list for what? I'm very confused ... for services for your

child? That sounds ridiculous and illegal since it's an EI program which

indicates EARLY intervention, not Puberty intervention.

Which state do you guys live in and what exactly has a wait list that long?

Is it a wait-list to get onto the program with the monthly stipend? (If so,

sign up now and just forget about it for quite a while)

I'm not familiar with the " Center for Citizens with Disabilities "

organization so I've not clue what their role is in your EI services. So sorry

to no

understand but a 10-year wait for services seems impossibly ridiculous and

like that person is off his/her rocker. Something is not right or has been

terribly misunderstood here. But I'm sure you can straighten it out.

--Jill

May 27, 2006

oh noo noo noo....not the EI. the other program with the monthly stipend.

Luckily they told me that hannah can get on the list too. I was never told that

because she didn't have EI. Sorry - should have been more specific!

JillcWood@... wrote:

In a message dated 5/24/2006 5:33:16 P.M. Eastern Daylight Time,

saraandchadd@... writes:

Then they add THERE IS A 10 YEAR WAIT LIST!!!! My mouth fell

open. And I thought just the diagnosis was a wait!

A 10-year wait list for what? I'm very confused ... for services for your

child? That sounds ridiculous and illegal since it's an EI program which

indicates EARLY intervention, not Puberty intervention.

Which state do you guys live in and what exactly has a wait list that long?

Is it a wait-list to get onto the program with the monthly stipend? (If so,

sign up now and just forget about it for quite a while)

I'm not familiar with the " Center for Citizens with Disabilities "

organization so I've not clue what their role is in your EI services. So sorry

to no

understand but a 10-year wait for services seems impossibly ridiculous and

like that person is off his/her rocker. Something is not right or has been

terribly misunderstood here. But I'm sure you can straighten it out.

--Jill

May 29, 2006

>

> oh noo noo noo....not the EI. the other program with the monthly

stipend. Luckily they told me that hannah can get on the list too.

\>>>>>>>

Sara,

Hey, I have been out of town for 5 days and sick a few before that so i

was not on here.

When Jake was diagnosed in 1995 we were in St. Tammany Parish. They

told us the SAME THING for the medicaid waivers and SSI. That is

weird, huh?

Elaine

May 30, 2006

Ok - I just realized that my question may have been wayyyyy too personal.

Please don't answer if you wish not to!!!!! Ugh - hate when I do that.

elaine_blackford beat4girl@...> wrote:

>

> oh noo noo noo....not the EI. the other program with the monthly

stipend. Luckily they told me that hannah can get on the list too.

\>>>>>>>

Sara,

Hey, I have been out of town for 5 days and sick a few before that so i

was not on here.

When Jake was diagnosed in 1995 we were in St. Tammany Parish. They

told us the SAME THING for the medicaid waivers and SSI. That is

weird, huh?

Elaine

All messages posted to this list are private and confidential. Each post is the

intellectual property of the author and therefore subject to copyright

restrictions.

May 30, 2006

>

> Elaine - did ya'll end up getting the SSI and Medicaid? >>

No, we did not even try to get it. What we did get was something

called Part C funds to help pay for his speech therapy and hearing

aids since insurance paid for only 20 ST sessions at a high copay and

nothing on aids. The case manager got that set up. We wound up moving

due to the general state of medical care and education in the area.

We did try to get a medicaid waiver for my other child that has

mental illness issues. He did not gualify either and they told us

that we could try to get him disability but I don't want to do that

until we just can't make it without that help paying some of his

medical bills. Thank goodness I have decent mental health insurance

and pharmacy benefits. His medication " cocktail " at the moment would

cost me over $1000 a month without it...and that is just his mental

health meds not his asthma meds. We were told that if he had to be

sent away to a facility that they would pay for 13 months of

inpatient though medicaid. He is in day treatment now on a different

sort of funding that is not based on income but his potential for

being placed in an institution/treatment center long term.

Jake is 12 now and does not get any type of therapy and such anymore,

has a CI and insurance pays those appts. I would not hesitate to

apply for help if he needs it in the future because he does have

other diagnosis that would probably qualify him.

Elaine

May 30, 2006

You generally can't get SSI for a child with just hearing loss unless there were

some ongoing issues or medical needs. A lot of times, people want you to apply

for SSI in order to get your child eligible for Medicaid. Medicaid pays for

lots of things that private insurance doesn't like hearing aids and therapies.

Most often, people don't qualify for SSI because their income is too high. So

if your child qualifies for SSI EXCEPT for the income is too high, you might

qualify for Beckett or Deeming medicaid waiver. This is for kids who would

be eligible to be institutionalized either in a nursing home, mental

retardation facility or residential school for the deaf (for example). It will

allow your child to have medicaid so he can live at home instead of at an

institution. Each state has different rules and I think there may be some states

without this waiver. So you would need to ask someone in LA. In GA they just

tightened up the eligibility and about 1/3 of kids are being taken off

Beckett and losing their medicaid. There is another type of medicaid called

" medically needy " that you might qualify for at least to get hearing aids. They

subtract your medical bills from your income and if you are then eligible for

medicaid because your income is lower, that might be able to help with hearing

aids. Also most states have some form of " crippled children's " program - it is

state program and is called different things in different states. In GA it is

Children's Medical Services. They will take you if your income is too high for

medicaid but still within their requirements. That would be worth looking into

also. And in GA, our state UNHS program had some funds that would help buy

hearing aids. So good luck hunting all of this down - it's a bear but it just

might help you tremendously.

Re: 10 YEAR wait!

>

>>

>> Elaine - did ya'll end up getting the SSI and Medicaid? >>

>No, we did not even try to get it. What we did get was something

>called Part C funds to help pay for his speech therapy and hearing

>aids since insurance paid for only 20 ST sessions at a high copay and

>nothing on aids. The case manager got that set up. We wound up moving

>due to the general state of medical care and education in the area.

>

>We did try to get a medicaid waiver for my other child that has

>mental illness issues. He did not gualify either and they told us

>that we could try to get him disability but I don't want to do that

>until we just can't make it without that help paying some of his

>medical bills. Thank goodness I have decent mental health insurance

>and pharmacy benefits. His medication " cocktail " at the moment would

>cost me over $1000 a month without it...and that is just his mental

>health meds not his asthma meds. We were told that if he had to be

>sent away to a facility that they would pay for 13 months of

>inpatient though medicaid. He is in day treatment now on a different

>sort of funding that is not based on income but his potential for

>being placed in an institution/treatment center long term.

>

>Jake is 12 now and does not get any type of therapy and such anymore,

>has a CI and insurance pays those appts. I would not hesitate to

>apply for help if he needs it in the future because he does have

>other diagnosis that would probably qualify him.

>

>Elaine

>

>All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

>

May 30, 2006

My son is on a Beckett waiver, although he will be leaving the program

in the next couple of weeks. It really does vary from state to state, and

only about half the states have it at all. In New York, where we live, it is

really intended for " medically fragile " children. My son went on it during

intensive cancer treatment. He easily met the somewhat arcane qualification

rules. At Sloan-Kettering, where he is treated, we have met quite a few

cancer kids on Beckett waivers from various states. The hearing loss

was entirely peripheral to it, though - in fact we didn't even know about

the hearing loss when he went on the program. Also, in his case, SSI had

nothing to do with it.

The reason he is leaving is because he is at the end of treatment.

Bonnie

>

> You generally can't get SSI for a child with just hearing loss unless

> there were some ongoing issues or medical needs. A lot of times, people

> want you to apply for SSI in order to get your child eligible for Medicaid.

> Medicaid pays for lots of things that private insurance doesn't like hearing

> aids and therapies. Most often, people don't qualify for SSI because their

> income is too high. So if your child qualifies for SSI EXCEPT for the income

> is too high, you might qualify for Beckett or Deeming medicaid

> waiver. This is for kids who would be eligible to be institutionalized

> either in a nursing home, mental retardation facility or residential school

> for the deaf (for example). It will allow your child to have medicaid so he

> can live at home instead of at an institution. Each state has different

> rules and I think there may be some states without this waiver. So you would

> need to ask someone in LA. In GA they just tightened up the eligibility and

> about 1/3 of kids are being taken off Beckett and losing their

> medicaid. There is another type of medicaid called " medically needy " that

> you might qualify for at least to get hearing aids. They subtract your

> medical bills from your income and if you are then eligible for medicaid

> because your income is lower, that might be able to help with hearing

> aids. Also most states have some form of " crippled children's " program - it

> is state program and is called different things in different states. In GA

> it is Children's Medical Services. They will take you if your income is too

> high for medicaid but still within their requirements. That would be worth

> looking into also. And in GA, our state UNHS program had some funds that

> would help buy hearing aids. So good luck hunting all of this down - it's a

> bear but it just might help you tremendously.

>

May 30, 2006

In Louisiana Medicaid covers hearing aids for children under the age of 18 - so

I'm thinking there aren't any other programs for " insurance " ?

Bonnie MacKellar bkmackellar@...> wrote: My son is on a Beckett

waiver, although he will be leaving the program