Re: Family Opportunity Act: Action Needed Now to get this passed!

[Guest guest]

,

thanks so much for all that information....Patty mom of 2 daughters

with cf

[Guest guest]

Hi! The state of Oregon did this in about 1990, having gotten a hard-

won waiver from Congress and Medicaid; I think it has worked quite well,

and is an excellent idea--except for those who are opposed to " welfare, "

which of course, it is, although I do not like the terma as most citizens

and/or their family members pay the taxes for " welfare " any way--it is not a

" handout, " and should not be regarded as such. Okay, I will crawl

off into the bushes now!

n Rojas

[Guest guest]

I was able to get my oldest on a waiver program that went by my kids income

and not ours. I had to prove she was disable and with her hydrocephalus we

were able to get her on. Now my youngest who also has CF we were not because

she does not have irreversible damage to her lungs. But even though she has a

fatal illness it is not a disability. Doesn't make sense to me. Deb A

[Guest guest]

In a message dated 7/23/2002 4:13:58 PM Central Standard Time,

mamabear@... writes:

> It doesn't make sense to me, either, Deb. I don't think that keeping

> sick kids insured is in any way taking a handout. I believe it's the

> government's responsibility to insure our nation's children

,

I believe that too! Deb A

[Guest guest]

, you are right; so far only Oregon has taken this particular step.

However, Vermont and Hawaii have State Coverage for all--each by a

somewhat differing method. We may ge to Universal Healthcare yet!

Ever hopeful,

n

[Guest guest]

, you are right; so far only Oregon has taken this particular step.

However, Vermont and Hawaii have State Coverage for all--each by a

somewhat differing method. We may ge to Universal Healthcare yet!

Ever hopeful,

n

[Guest guest]

WE PASY THE TAXES, OR TRY TO; WE SHOULD HAVE UNIVERSAL HEALTH

CARE! We are the only industrialized nation that does not have it!

n Rojas wcf who will keep working on this one until the last breath!

And I do mean that!

[Guest guest]

WE PASY THE TAXES, OR TRY TO; WE SHOULD HAVE UNIVERSAL HEALTH

CARE! We are the only industrialized nation that does not have it!

n Rojas wcf who will keep working on this one until the last breath!

And I do mean that!

[Guest guest]

WE PASY THE TAXES, OR TRY TO; WE SHOULD HAVE UNIVERSAL HEALTH

CARE! We are the only industrialized nation that does not have it!

n Rojas wcf who will keep working on this one until the last breath!

And I do mean that!

[Guest guest]

Don't you all just love my typing?! It get's worse when I'm on a rant!

Love,

n Rojas

[Guest guest]

Don't you all just love my typing?! It get's worse when I'm on a rant!

Love,

n Rojas

[Guest guest]

Don't you all just love my typing?! It get's worse when I'm on a rant!

Love,

n Rojas

[Guest guest]

If I am not mistaken, in Florida there is no waiver program like that.

If my husband and I make too much for SSI, we are completely out of luck

as far as 's health care. His only option is for us to come up with

1/3 of my husband's monthly take-home pay to get group health insurance

through my husband's employer ($600/month). That $600 doesn't include

the high co-pays, like $500 for a hospital visit and at least $150/mo in

prescription co-pays, more if he needed TOBI or anything. If I had to

pay that, I couldn't even put food on the table, never mind check him

into the hospital if needed! It's very frustrating, so we end up trying

to stay poor to continue to be able to afford the state health insurance

program.

It doesn't make sense to me, either, Deb. I don't think that keeping

sick kids insured is in any way taking a handout. I believe it's the

government's responsibility to insure our nation's children.

^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^

mama to , 23 mo, wCF and alpha-1

and to , 3 yr 11 mo w/alpha-1

> Re: Family Opportunity Act: Action Needed Now to

get this

> passed!

>

> I was able to get my oldest on a waiver program that went by my kids

income

> and not ours. I had to prove she was disable and with her

hydrocephalus we

> were able to get her on. Now my youngest who also has CF we were not

because

> she does not have irreversible damage to her lungs. But even though

she has a

> fatal illness it is not a disability. Doesn't make sense to me. Deb A

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

>

> --------------------------------------------------

>

>

>

[Guest guest]

,

I looked it up on the Florida Kids Care web site and you can buy into the

program if you are over the income limits.

Look at the following link:

http://www.floridakidcare.org/families/eligibility2.html#income

I was also told when JC was first diagnosed that cf is covered on the state

insurance program if you can not get affordable insurance elsewhere, and I

don't think income was a factor. I could be mistaken about this.

I have excellent insurance where I work so I haven't had to worry about this

yet. But I am hoping my husband's business will make enough next year that

I can quit my job and then insurance will definitely be a concern.

Angie P.

Re: Family Opportunity Act: Action Needed Now to

> get this

> > passed!

> >

> > I was able to get my oldest on a waiver program that went by my kids

> income

> > and not ours. I had to prove she was disable and with her

> hydrocephalus we

> > were able to get her on. Now my youngest who also has CF we were not

> because

> > she does not have irreversible damage to her lungs. But even though

> she has a

> > fatal illness it is not a disability. Doesn't make sense to me. Deb A

> > -------------------------------------------

> >

> >

> > The opinions and information exchanged on this list should

> > IN NO WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> > TREATMENTS.

> >

> > --------------------------------------------------

> >

> >

> >

[Guest guest]

> I looked it up on the Florida Kids Care web site and you can buy into

the

> program if you are over the income limits.

> Look at the following link:

> http://www.floridakidcare.org/families/eligibility2.html#income

That is *only* if your child is age 5 through 18. For children under 5,

you cannot buy into the program if you are over the income limits. The

Family Opportunity Act would change this, and would increase the limits

to 250% of the federal poverty limit instead of 200%.

> I was also told when JC was first diagnosed that cf is covered on the

state

> insurance program if you can not get affordable insurance elsewhere,

and I

> don't think income was a factor. I could be mistaken about this.

>

Are you in Florida? Because I have researched it extensively, talked to

my son's CMS nurse and Kid Care and Kid Care supervisors, and on and on,

and in Florida, if you make more than the SSI guidelines, which are a

little bit above the 200% limit ($3300/mo versus $3000/mo for a family

of four, for example), you are completely out of luck as far as health

care, cystic fibrosis or not. It does vary by state, though!

Believe me, I have done my homework on this one. I want to go to

graduate school but the stipend I would receive as a student might push

us over the income limit. It's really frustrating to be limited in this

way and I sure hope this bill passes.

^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^

mama to , 23 mo, wCF and alpha-1

and to , 3 yr 11 mo w/alpha-1

> Re: Family Opportunity Act: Action Needed Now to

get this

> passed!

>

> ,

>

> I looked it up on the Florida Kids Care web site and you can buy into

the

> program if you are over the income limits.

> Look at the following link:

> http://www.floridakidcare.org/families/eligibility2.html#income

>

> I was also told when JC was first diagnosed that cf is covered on the

state

> insurance program if you can not get affordable insurance elsewhere,

and I

> don't think income was a factor. I could be mistaken about this.

>

> I have excellent insurance where I work so I haven't had to worry

about this

> yet. But I am hoping my husband's business will make enough next year

that

> I can quit my job and then insurance will definitely be a concern.

>

> Angie P.

[Guest guest]

, Please stay on top of this ....YOU DESERVE THE SCHOOL As hard as you

have worked ..Your a great mommy & that would sure help you all financially

as well . Bless your heart .take care & please keep us all up-dated here.

LOVE & HUGS, grdmBEV

Re: Family Opportunity Act: Action Needed Now to

get this

> passed!

>

> ,

>

> I looked it up on the Florida Kids Care web site and you can buy into

the

> program if you are over the income limits.

> Look at the following link:

> http://www.floridakidcare.org/families/eligibility2.html#income

>

> I was also told when JC was first diagnosed that cf is covered on the

state

> insurance program if you can not get affordable insurance elsewhere,

and I

> don't think income was a factor. I could be mistaken about this.

>

> I have excellent insurance where I work so I haven't had to worry

about this

> yet. But I am hoping my husband's business will make enough next year

that

> I can quit my job and then insurance will definitely be a concern.

>

> Angie P.

PLEASE do not post religious emails to the list.

-------------------------------------------

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

--------------------------------------------------

[Guest guest]

In a message dated 7/24/02 4:51:54 AM Central Daylight Time, bevd@...

writes:

> http://www.floridakidcare.org/families/eligibility2.html#income

>

>

When this suppose to pass? I'm been doing my homework here in La. also but

all the red tape it's hard but I'm still fighting . Even if we have to pay

for medicaid it's worth it ,specially when your spouse is self employed and

we can't find any affordable insurance. At this moment all my 3 kids has

lachip but my husband and I don't have any kind of coverage and we can't get

any because a pre-ex so no one wants to insure me I have ,asthma,lupus and

now an enlarge liver and only one income. So I have to go to Charity hosp.

and still pay .We need to all get together and fight this.

Debbie mom to Sharon 17 ncf, 10 ncf & 3 wcf

[Guest guest]

Oh Debbie! This is terrible it is really sad that people can't afford

insurance and something has to change here in the states. I feel for you I am

self employed and work with a lot of other self employed people and know how

expensive it is to pay for insurance. Thank God my husband has health

insurance. I don't know how we would do it. I tell him as long as the kids

are with us he will have to keep working at the business he is at because of

the fear that they will not cover are girls with CF and his RA. Pre existing

condition. It SUCKS!!!! Deb A

[Guest guest]

Thank you, Bev! I certainly am not going to give up. And access to

health care is one of the issues I would like to address in school. The

program at University of Florida is an excellent one and deals with

clinical and health psychology, which is what I would like to do. So I

just have to work out the logistics! There are other schools that

offer much more competitive health insurance, so there is always the

option to move out of state. But wouldn't it be cool if we could be

right near the doctors and clinic that we love, and that have a detailed

knowledge of alpha-1 and are tops in the research on that disorder as

well as on CF?

^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^

mama to , 23 mo, wCF and alpha-1

and to , 3 yr 11 mo w/alpha-1

> RE: Family Opportunity Act: Action Needed Now to

get this

> passed!

>

> , Please stay on top of this ....YOU DESERVE THE SCHOOL As hard

as you

> have worked ..Your a great mommy & that would sure help you all

financially

> as well . Bless your heart .take care & please keep us all up-dated

here.

>

> LOVE & HUGS, grdmBEV

[Guest guest]

That is horrible! I don't know when the family opportunity act will

actually happen. It would be such a relief to so many families, I know

that, for sure. Did you call the numbers listed on the web page? I got

to leave a message for Sen. Daschle on his voice mail explaining our

situation. I think whenever people can share their personal stories it

makes it so much more relevant, you know?

Hang in there...hopefully this will be an option for you soon!

^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^

mama to , 23 mo, wCF and alpha-1

and to , 3 yr 11 mo w/alpha-1

> -----Original Message-----

> From: redsdennys@...

>

> When this suppose to pass? I'm been doing my homework here in La. also

but

> all the red tape it's hard but I'm still fighting . Even if we have to

pay

> for medicaid it's worth it ,specially when your spouse is self

employed and

> we can't find any affordable insurance. At this moment all my 3 kids

has

> lachip but my husband and I don't have any kind of coverage and we

can't get

> any because a pre-ex so no one wants to insure me I have ,asthma,lupus

and

> now an enlarge liver and only one income. So I have to go to Charity

hosp.

> and still pay .We need to all get together and fight this.

>

> Debbie mom to Sharon 17 ncf, 10 ncf & 3 wcf

[Guest guest]

YOU GO GIRL!! If anyone can get that done it is you .Bless your heart!!

LOVE & HUGS,

GRDMBEV

RE: Family Opportunity Act: Action Needed Now to

get this

> passed!

>

> , Please stay on top of this ....YOU DESERVE THE SCHOOL As hard

as you

> have worked ..Your a great mommy & that would sure help you all

financially

> as well . Bless your heart .take care & please keep us all up-dated

here.

>

> LOVE & HUGS, grdmBEV

PLEASE do not post religious emails to the list.

-------------------------------------------

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

--------------------------------------------------

[Guest guest]

I did like wise, called Senator Kennedy and Rep. Gebhart (I think) as well,

and

also Barbara Lee, Diane Feinstien and Barbara Boxer. Let's hope it helps.

n

[Guest guest]

Debbie,

With one income and 3 kids are you not able to get on medicade? Or some other

type of help. That's a lot to take care of with only one income.

Unless you are independently wealthy or if your hubby makes a massive amount

of money by himself.

Good luck, hope you can find something that will help.

Aunt B -------------------- to Rodney 11 wcf

[Guest guest]

I wish we were wealthy but down here the everything has red tape. Like I said

my kids now have lachip until Jun of 03 and then reapply again. But it was

hard at the beginning because we went 200.00 over the limit and they didn't

want to approve us,finally after alot of phone calls and paperwork later

finally they got sick of me and we got approved.Also my son wasn't approve

ssi because he wasn't sick enough but that is another story.

Debbie mom to Sharon 17 ncf, 10 ncf & 3 wcf