Re: Health Insurance Questions

[Guest guest]

:

We're just lucky I think. My SIL is in that situation too. In her case, her

job pays squat but she's got great insurance, her husband is self-employed so

that insurance would be crummy and expensive.

My husband works for a big company -- so he's the bread and insurance winner.

Before he got that job in '97, his old job had none, and my job had

not-so-good insurance. A few years before that, I was considered

self-employed also, and the insurance we had was like $500 per month for only

catastrophic coverage (surgery, etc.). If we had any of our old insurance

we'd have been broke within weeks.

I thank God for the timing of all this -- us getting the good insurance just

in time... I was pregnant less than a year later, complicated pregnancy,

complicated child! I sort of live in fear of changes to our insurance or to

Jeff's job. But I keep praying and crossing my fingers that it all continues

as-is. I sure hope DH can handle working for a big company for a long time!

Sorry I don't have a good answer for you though.

(mom to , 3yrs old, polysaccharide antibody def)

[Guest guest]

Hi Everyone!

I keep thinking about this insurance issue too, and I can't help but think

that there has to be coverage out there somewhere for people who do not have

it. I have been worried a great deal about it because my son will no longer

be covered under my insurance a year from now due to his age. I'm starting

to look into possibilities now. It just seems that there must be some sort

of social security, disability or something that would pay for the cost of

IVIG's and any other needed medications or treatments. I mean, unless

someone is a millionnaire how could anyone possibly afford treatment? Any

other ideas? I'm always open for suggestions. Take care everyone. Thanks.

Lee

[Guest guest]

Hi Pattie,

Thank you for the info. I wasn't aware of this. I know about COBRA, but

what is HIPPA? Thanks! Take care. Lee

[Guest guest]

If you son has neverlost coverage and he gets insurance through a job, group,

etc... then he has to be covered by that insurance. Your (or your husbands)

employer has to provide you with a HIPPA letter for you or your son. I am

fairly certaint hat this law is applicable in your situation.

We had to get Hippa letters for our boys when we moved-- we paid for COBRA so

they would not loose coverage ad then the old employer send us a HIPPA letter

that we gave to eh new company/insurance company to prove the boys had never

lost coverage an thereby making the *preexisting conditions* clause null and

void.

It would be worth your looking into. Again, I am no expert... this has been our

experience-- and thakfully the Federal laws protexcted us! Otherwise my husband

would still be in his old job b/c we could never get insurance once the boys

lost coverage....

hope this all makes sense.

pattie

[Guest guest]

HIPAA stands for Health Insurance Portability and Accountability Act. It is

a massive piece of legislation, which include portability, security and

privacy of medical information. The portability piece allows you credit for

prior coverage if you are changing health plans, so that the new health plan

is required to either limit or eliminate the pre-existing condition

requirement.

Shari Singleton

NCQA Project Manager

Director, Legal & Regulatory Services

(918) 459-1298

> Re: Health Insurance Questions

>

> Hi Pattie,

> Thank you for the info. I wasn't aware of this. I know about COBRA, but

> what is HIPPA? Thanks! Take care. Lee

>

>

> This forum is open to parents and caregivers of children diagnosed with a

> Primary Immune Deficiency. Opinions or medical advice stated here are the

> sole responsibility of the poster and should not be taken as professional

> advice.

>

>

[Guest guest]

it works regardless of the reason you change carriers, it is just federally

mandated the letter be sent automatically if you are left go from your job

for any reason. if you need cheaper insurance and you go to another co on

your own all you need to do is request the letter when you terminate your

policy, which doesn't really matter, because when you apply for new coverage,

they will also check with your current carrier to be sure you are covered.

you can also go to the new state programs for " low income " child coverage,

and if you fall in their guidelines they will help pay for your family

coverage at work, instead of having to be uninsured. the low income

guidelines for help are into the 30's for a family of 4, so it pays to check

it out

[Guest guest]

Thanks for the info Shari. Lee

[Guest guest]

Hi !

I know how you feel when it comes to the insurance coverage. It's so

frustrating and scary, isn't it? It does help to have others to talk to and

discuss things with though. Thanks for the suggestions. When (notice I

wrote " when " and not " if " ) I find info I'll pass it on. Take care. Lee

[Guest guest]

Lee,

My problem with insurance is similar to yours--we make too much to qualify

for the state-sponsored programs--I've looked at all the guidelines &

there's just no way. Not even on just one salary. So, if I were to quit my

job & stay home with the kids--which I would LOVE to do, I still couldn't

afford to get treatment for my kids, Autumn especially.

I know there is some disability insurance out there through Social Security.

For kids, you have to go through all the hoops to prove the disability

before you're approved. And, what happens in the meantime? Nothing. . .you

get no coverage at all & our kids get no treatment--or at least not the

treatment they need. In your son's case, I would search the Social Security

website (that's where I found some disability information to begin with) &

see what it would take to get him coverage through SSI or something similar.

Plus, I've heard that all people who apply for SSI are routinely turned down

& have to appeal in order to get benefits--this I've heard from many

caseworkers who have muddled through the appeal process with their clients.

We had one client here turned down for SSI even though she clearly qualified

(kidney transplant recipient--automatically qualified). We contacted our

local congressman who red-flagged her case & 24 hours later she was covered.

It's a shame you have to go to those lengths to get the federal government

to do what they're supposed to do to help people.

<stepping off my soap box>

So, if anyone's got some solutions, I'm certainly open to them. Insurance

is such a touchy subject with me (in case you didn't notice) that I'm

willing to try just about anything.

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (9 months)

[Guest guest]

Pattie,

Help me out a little on this one: What's a HIPPA letter? How do you get

one?

I've wanted to change my health insurance from one that's provided by my

company to a private one--i'm paying $9,700 per year for 25% of my coverage,

plus 100% of dependant coverage (not including husband). I can't afford

that, but we need the insurance.

Do you mean if I wanted to change my insurance carrier, all I have to have

is a HIPPA letter and the new carrier has to cover all of Autumn's claims

without the pre-existing clause? If so, that would really be wonderful to

us--I am working to pay for insurance & child care (child care's my fault--I

only pay for the best!).

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (9 months)

> If you son has neverlost coverage and he gets insurance through a job,

group, etc... then he has to be covered by that insurance. Your (or your

husbands) employer has to provide you with a HIPPA letter for you or your

son. I am fairly certaint hat this law is applicable in your situation.

>

[Guest guest]

Thanks, Shari! I always forget what the letter stand for! I remember the

Heath Insurance part ad forget the rest!

Do you know if it would apply in Lee's case?

pattie

HIPAA stands for Health Insurance Portability and Accountability Act. It is

a massive piece of legislation, which include portability, security and

privacy of medical information. The portability piece allows you credit for

prior coverage if you are changing health plans, so that the new health plan

is required to either limit or eliminate the pre-existing condition

requirement.

Shari Singleton

NCQA Project Manager

Director, Legal & Regulatory Services

(918) 459-1298

[Guest guest]

, I am pretty sure that it would cover that situation, too. Your employer

gives it to you to prove that you have never lost coverage. If you lose coverage

before your new coverage.. then teh new compnay doesn;t have to go by the

Federal guidelines... it cost us $1400 for Cobra the few months did not

have his insurance with his new company. I assume it works the same no matter

the reason you change insurance companies.....

I'll see what I can find out-- you could try to talk to the benefits coordinator

at your job-- should know all about it.

Pattie

[Guest guest]

OH-- seee--I had the thing wrong-- LOL it is HIPAA....

<gee>

Pattie

[Guest guest]

I don't think HIPAA has anything to do with the social security disability

piece, if that's the question. If it's not, provide me with the question

and I'll see if I know the answer.

Shari Singleton

NCQA Project Manager

Director, Legal & Regulatory Services

(918) 459-1298

> Re: Health Insurance Questions

>

> Thanks, Shari! I always forget what the letter stand for! I remember

> the Heath Insurance part ad forget the rest!

>

> Do you know if it would apply in Lee's case?

>

> pattie

>

>

> HIPAA stands for Health Insurance Portability and Accountability Act. It

> is

> a massive piece of legislation, which include portability, security and

> privacy of medical information. The portability piece allows you credit

> for

> prior coverage if you are changing health plans, so that the new health

> plan

> is required to either limit or eliminate the pre-existing condition

> requirement.

>

> Shari Singleton

> NCQA Project Manager

> Director, Legal & Regulatory Services

> (918) 459-1298

>

>

>

[Guest guest]

I looked at the link you sent & the act does not cover us. We have not lost

our coverage. I just want to get another carrier because mine is too

expensive. The only way it helps me is if I quit my job & we have no health

insurance--a risk I can't afford to take. Such a sticky mess. . . .!

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (9 months)

P.S. I work for a small non-profit; we've got a business manager, me & and

an Executive Director who do the Human Resource work. If I want to know

anything about benefits, I've got to do the legwork myself. It's a thought,

though. . .

[Guest guest]

I looked at the link you sent & the act does not cover us. We have not lost

our coverage. I just want to get another carrier because mine is too

expensive. The only way it helps me is if I quit my job & we have no health

insurance--a risk I can't afford to take. Such a sticky mess. . . .!

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (9 months)

P.S. I work for a small non-profit; we've got a business manager, me & and

an Executive Director who do the Human Resource work. If I want to know

anything about benefits, I've got to do the legwork myself. It's a thought,

though. . .

[Guest guest]

I've been told that many states have TEFRA (don't ask what it stands for, I

don't remember). It has been more than a year ago that someone mentioned

to me that we may be able to qualify for TEFRA coverage in the event that

our income exceeds state maximum for state insurance (we owned our own

company and had no medical coverage at the time was diagnosed, so we

out of luck as far as private insurance is concerned). I believe that it

is a program set up to maintain insurance coverage on an interim basis

(such as changing jobs, etc.) I was told to check with DHS (Dept of Human

Services) and ask specifically about the TEFRA program if we ever lost

medicaid coverage. I do not believe that it is intended to be longterm

coverage though. More of a bandaid between programs.

We're just pretty much stuck in a low income situation. It keeps us well

covered (I've never seen a bill from the hospital for - ever - in 4

years) and has been pretty much hassle free (except when the primary doctor

forgets to sign off on a referral).

Good luck,

Wenoka

At 11:33 PM 02/21/2002 EST, you wrote:

>Hi Everyone!

>I keep thinking about this insurance issue too, and I can't help but think

>that there has to be coverage out there somewhere for people who do not have

>it. I have been worried a great deal about it because my son will no longer

>be covered under my insurance a year from now due to his age. I'm starting

>to look into possibilities now. It just seems that there must be some sort

>of social security, disability or something that would pay for the cost of

>IVIG's and any other needed medications or treatments. I mean, unless

>someone is a millionnaire how could anyone possibly afford treatment? Any

>other ideas? I'm always open for suggestions. Take care everyone. Thanks.

>Lee

>

>This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

>

[Guest guest]

,

I don't know what state you are in but many states have a program that is

called waiver. Waiver allows children and adults to get medical coverage

without regards to income due to multiple medical problems even if SSI turns

you down because of income.

You need to go to the department of Human Services in your county and ask for

it. I live in Ohio and we have it as does Iowa. You may have to go to a

supervisor to find out if you state has it. Also ther may be a waiting list

to get on it but once you get it you won't lose it as long as the person has

the medical problems.

I hope this helps.

Rose -mom to Stef IGG and IGA deficeint,tubes T & A, epilepsy, numerous

infections

[Guest guest]

Dear ,

We'll just hang in there together. Take care. Lee

[Guest guest]

Lee,

Thanks a bunch--my husband & I are trying to find every way possible to keep

the insurance & still work with our household budget. We've trimmed

expenses tremendously, but still feel the need to cut more--or raise the

income. We could make more $ if we moved to a larger city--but then, we'd

have higher rent/utilities/car insurance, etc. etc. You know the drill. So,

for now we're looking at the health insurance question since it does cost us

so much to insure the kids. But, health insurance is a must with us, so we

can't drop it all together. Wish there was an easier solution. Yes, I'm

also glad I've got others with whom I can talk about it. Some family

members think I'm crazy for paying this much on ins., but they don't

understand how devastating a single cold can be for Autumn! Thanks for

listening.

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (9 months)

[Guest guest]

> ,

> I don't know what state you are in but many states have a program

that is

> called waiver. Waiver allows children and adults to get medical

coverage

> without regards to income due to multiple medical problems even if

SSI turns

> you down because of income.

______________________________________________________________________

______________________________________________________________________

Hi!

I wanted to let you know the name of the Waiver is called

Beckett. Or when you get in contact with someone ask for info. on

the TEFRA Waiver. Blake has had this since he was 4.

We went through the DSS here in SC where we live. it had to be

proven that Blake was better off being cared for at home, and we had

to do this by getting all of his Drs. to write letters to the DSS

telling them that all Blake's " problems " were as real as they were

and that we in no way could afford the left over bills after the

insurance paid.

Another factor with this, is they consider the child's income. T

Which I beleive that there are not too many 4 yr. olds working in the

work force right now. They don't worry about your income. All you

need to do is go to your local SSI office fill out the form to get

SSI. When they send you the form saying you are denied coverage

through them, go to DSS and ask for the TEFRA form. This waiver is

updated by your local DSS office every 2 years. Then they get Voc

Rehab. to look and deem it nessary to continue with the waiver for

the particular child. That is the one down fall of all of this. The

voc. rehab. can turn the child down if they even think the child can

work with his condition as an adult. Another reason for doing this is

to prove it will be cheaper to treat the child at home rather than in

an institution.

I was floored when they first turned Blake down saying that as an

adult with his problems he would be able to " manage " as an adult.

Well needless to say I appealed the decision. I wrote a letter

discribing life with Blake as a 4 yr. old. What really helped was he

was in a program for children that wer born prematurely with numerous

developmental delays. Blake was also in several therapies. I told

the Judge at the hearing that Blake was just as stressed as his

parents were about dealing with all the stuff he goes through on a

daily basis. We also had several letters form Blake's Drs. and

teachers about his daily activities. We also had to show how hard it

was on Blake to miss so much school because of the thrapies and

traveling back and forth to the hospital with him. We had even

enrolled Blake in a regular class for children his age, but had to

put Blake back in to the other class because he could not cope or

keep up with the other children his age.

Well this year when Blake went up for review, they never questioned

his coverage. They saw how much school Blake missed and then how he

had to be placed on complete homebound because of his immune system,

plus, Blake spent 15 weeks in the hospital for a rare bone

infection. He was given automatic coverage without questions asked.

This program, Beckett, is named after a girl in Nwe York.

She was living on a ventilator and could not get SSI becaues she had

insurance coverage and her parents both worked and had too much

income to get the SSI for the child. But all the family wanted was

medical assistance for . They were not interested in getting

a " check " for her, just some help in covering her medical expenses.

They had it palced into law I beleive in '68 or '70. I'm not quite

sure.

You know every little bit helps when you have to face the day to

day routine all of us her a sparents of a PID child face. It does

not hurt to try and get the best help for theses little ones.

Well I need to close. I hope everyone has a good day.

(Mom to Blake a PID child)

[Guest guest]

Interesting. . .I've got some friends at Department of Human Services, so

I'll ask them. Thanks for the tip!

One question, though: Do I have to drop her off my insurance for a period

of time before she can get on this?

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (9 months)

> ,

> I don't know what state you are in but many states have a program that is

> called waiver. Waiver allows children and adults to get medical coverage

> without regards to income due to multiple medical problems even if SSI

turns

> you down because of income.

> You need to go to the department of Human Services in your county and ask

for

> it

[Guest guest]

Ray

No you don't need to drop her from your insurance at all. My husband has

insurance through his employer and we also get waiver for our daughter. It

is a secondary in this case but if my husband was to lose the insurance for

any reason waiver would take over as the primary. Good luck I hope this

helps

Rose- Mom to Stefanie IGG and Iga deficeint, 5 sets PE tubes, numerous

infections and epilepsy

[Guest guest]

,

I know that you're in TX... I did some research b/c I'm a TX resident

(though living in MO for school currently).

The HIPAA law essentially is a federal law mandating that there's some

sort of ability to move from one insurance policy to another, without

having to lose the coverage already earned for pre-existing conditions.

But the states essentially come up with their own ways of meeting the

federal mandates (the same idea as how Medicaid works). In TX, I

believe their HIPAA compliant plan is through the TX High Risk Pool.

It's run through Blue Cross-Blue Shield, and it can get expensive, but

for people without other options, it's a pretty good solution.

Interestingly, Texas was one of the first states to come up with its own

plan, well before the HIPAA was actually passed. So, in Texas, you can

move from one group insurance plan to another, without losing coverage

for current pre-existing illnesses, without having to use or limit

yourself to the BCBS plan. The requirements are that you have to have

been covered by your current group plan for 18 months or more (your

current insurance company will provide a letter stating that you've been

covered), and as long as you are moving from a group plan (or HMO) to

another group or HMO, you're set.

THE KEY in all of these is the GROUP coverage. Individual plans are

" deadly " because once you're in the individual plan you aren't covered

by HIPAA anymore.... If/when your company decides on another group plan

and you decide that looks better than what you've got, or you take a new

job with new coverage, etc, and the new companies want to impose a

pre-existing waiver (usually they will not cover pre-existing conditions

for 12-18 months, though I've seen them say they'll require 3 YEARS

before covering pre-existing illnesses), you don't have a leg to stand

on, if you're coming from an individual plan and you want to get onto

your company's new insurance. So, you need to stick with a GROUP plan,

and as long as you've had 18 months of continuous coverage, you can move

to another GROUP plan without problems.

If you want info on the TX high risk insurance pool, just type that into

with quotes around it, and you'll find the info.

I think Dale also mentioned the " patientadvocate.org " or something like

that (they presented at the IDF conference in June). They'd be the ones

to talk to, in terms of trying to navigate your way through these crazy

laws. They will help you figure out what is necessary in order to

change to new insurance, and they will help you make sure that you're

not going to shoot yourself in the foot by doing something crazy like

switching to an individual insurance plan. That's the kind of thing

that most people wouldn't know *not* to do, and they are very

well-versed in the various laws, what's required, and the like.

If you need more info, let me know...

Take care,

[Guest guest]

Thanks, --looks like I'm stuck with group coverage--at least for

now. I really don't want to move to individual coverage since the benefits

are not as great.

I am working with our nonprofit management center here to develop an

affiliation group so that more nonprofits can go in on the same pool for

insurance. I hear so many of the same complaints--too much insurance, high

risk pools, etc.--and we think this may help. We're still in the

researching phase and it could take another year to pull it all together.

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (9 months)