Re: Now need to build a case to see a specialist

[Guest guest]

Hi, :

Sorry it's taken a few weeks to find an answer for you--hopefully this is

still in time to help or, better still, hopefully you've gotten some more

specific advice. I forwarded your question to a friend who is a former

HR/benefits manager for a large corporation, and who has been most helpful

in advising me on how to handle insurance issues. She writes:

---answer starts here----

As for your friend in Vermont, the following is my best advise. But please

bear in mind that I know very little about medicare and absolutely nothing

about the insurance rules in Vermont (each state could be different or they

let the federal rules govern). However, it has been my experience that

writing detailed letters from her, and her doctor and even a back specialist

who doesn't do this sort of operation but knows how complicated it is would

be a good start. Send this to the local medicare board (is there one in

Vermont) or whomever does the pre-authorization for her plan. I would also

try to find out a name of a medical director within the Medicare coverage

she has and address a letter to that person, instead of sending it via the

normal mail route where some idiot clerk with no medical expertise could be

making a decision. I would suggest to your friend that she also bones up on

the appeals process and don't let the response periods or waiting periods

lapse for doing something. This is a governmental bureaucracy after all.

And finally, I would highly recommend to her that she document EVERYTHING

and get it in writing. All tests, Dr.s notes, previous surgeries, etc. She

should build up as big of a case as she can to help herself in the event

that the they deny the meeting with the specialist and subsequent surgery

or they deny any appeal that she may need to file.

----end answer----

I know that it's not as concrete as you'd like, but perhaps there's

something in there that you haven't already thought of.

Regards,

Elissa

At 05:29 PM 05/28/2002 -0400, A. Tisoncik wrote:

>I've just gotten back from the first back specialist (note: *not* scoliosis

>specialist... more on that later) I've seen since I was a teenager. I found

>out that my old Harrington Rod fusion is intact, that it runs from T4 to L4,

>that I have flatback syndrome (oh what a surprise, *yawn*), lots of arthritis

>and general degenerative crappiness, and what he called a displaced vertebrae

>(very visible on the x-rays), which I am guessing is a reference to

>spondylolisthesis.

>

>About the only real surprise in all of that was the length and placement of

>my fusion. What I remember being told as a 12 year old was that they fused my

>thoracic vertebrae. I'm not too surprised though, because I had suspected my

>fusion wasn't quite where they had told me.

>

>Now for the fun part: The doctor I saw was a spine generalist, someone who

>deals mostly in slipped discs. He's not a scoliosis specialist, let alone a

>scoliosis revision specialist, which unfortunately doesn't stop him from

>performing scoliosis revision surgeries.

>

>I need to make a case with Vermont state Medicaid (I'm on disability) to

>allow me to go out-of-state to see a genuine bona-fide specialist, like Dr.

>Rand in Boston. I need information, of the sort that I can put in an

>application to make my case. Does anyone know of any authoritative sources

>that indicate that scoliosis is best treated by scoliosis specialists, not

>scoliosis dabblers?

>

>--

> A. Tisoncik, aka muskie

>tisoncik@...

>

>

>

[Guest guest]

Elissa,

Again, my apologies for being so far behind on people's posts to this

list.

I just want to thank you for taking the time and trouble to query

your friend who handled HR/benefits for a large corporation.

It's always impressive when someone goes this far out of her way in

endeavoring to help someone else . . . many thanks.

Eliana

> >I've just gotten back from the first back specialist (note: *not*

scoliosis

> >specialist... more on that later) I've seen since I was a

teenager. I found

> >out that my old Harrington Rod fusion is intact, that it runs from

T4 to L4,

> >that I have flatback syndrome (oh what a surprise, *yawn*), lots

of arthritis

> >and general degenerative crappiness, and what he called a

displaced vertebrae

> >(very visible on the x-rays), which I am guessing is a reference to

> >spondylolisthesis.

> >

> >About the only real surprise in all of that was the length and

placement of

> >my fusion. What I remember being told as a 12 year old was that

they fused my

> >thoracic vertebrae. I'm not too surprised though, because I had

suspected my

> >fusion wasn't quite where they had told me.

> >

> >Now for the fun part: The doctor I saw was a spine generalist,

someone who

> >deals mostly in slipped discs. He's not a scoliosis specialist,

let alone a

> >scoliosis revision specialist, which unfortunately doesn't stop

him from

> >performing scoliosis revision surgeries.

> >

> >I need to make a case with Vermont state Medicaid (I'm on

disability) to

> >allow me to go out-of-state to see a genuine bona-fide specialist,

like Dr.

> >Rand in Boston. I need information, of the sort that I can put in

an

> >application to make my case. Does anyone know of any authoritative

sources

> >that indicate that scoliosis is best treated by scoliosis

specialists, not

> >scoliosis dabblers?

> >

> >--

> > A. Tisoncik, aka muskie

> >tisoncik@a...

> >

> >

> >

[Guest guest]

,

I wish I knew more about Medicaid. Regarding information for

building a case, have you run a search in Medline or one of the other

databases? Mina's and Suzy Habibi's websites might also be

helpful. I know herself has made a strong case for seeking

out a flatback revision subspecialist for your kind of situation.

Unfortunately I have not yet found any specific MD-backup for this

position, except for the more generic studies indicating that

surgical results are better when you go to a hospital specializing in

the procedure you are contemplating (e.g., in the " gastro " area,

which doesn't help us " orthos " too much).

I cited some of the more popular abstracts, e.g., the studies of

LaGrone, Bradford, et al, in my own brief to my HMO when seeking an

out-of-state referral. Unfortunately the carrier denied me anyway,

and I needed to " move heaven and earth " to get better coverage via a

PPO. I would hope that a program under government auspices, such as

Medicaid, might be more responsive, but . . . .?

Have you tried contacting one of the national revision specialists

directly to see if s/he could provide appropriate citations? Might

be worth a try . . .

Eliana

> I've just gotten back from the first back specialist (note: *not*

scoliosis

> specialist... more on that later) I've seen since I was a teenager.

I found

> out that my old Harrington Rod fusion is intact, that it runs from

T4 to L4,

> that I have flatback syndrome (oh what a surprise, *yawn*), lots of

arthritis

> and general degenerative crappiness, and what he called a displaced

vertebrae

> (very visible on the x-rays), which I am guessing is a reference to

> spondylolisthesis.

>

> About the only real surprise in all of that was the length and

placement of

> my fusion. What I remember being told as a 12 year old was that

they fused my

> thoracic vertebrae. I'm not too surprised though, because I had

suspected my

> fusion wasn't quite where they had told me.

>

> Now for the fun part: The doctor I saw was a spine generalist,

someone who

> deals mostly in slipped discs. He's not a scoliosis specialist, let

alone a

> scoliosis revision specialist, which unfortunately doesn't stop him

from

> performing scoliosis revision surgeries.

>

> I need to make a case with Vermont state Medicaid (I'm on

disability) to

> allow me to go out-of-state to see a genuine bona-fide specialist,

like Dr.

> Rand in Boston. I need information, of the sort that I can put in

an

> application to make my case. Does anyone know of any authoritative

sources

> that indicate that scoliosis is best treated by scoliosis

specialists, not

> scoliosis dabblers?

>

> --

> A. Tisoncik, aka muskie

> tisoncik@a...

[Guest guest]

On Mon, 2002-06-17 at 20:16, elianarefaya wrote:

>

> ,

>

> I wish I knew more about Medicaid. Regarding information for

> building a case, have you run a search in Medline or one of the other

> databases? Mina's and Suzy Habibi's websites might also be

> helpful.

I've done that, read the two websites, and even referred my primary

care physician to the two websites. He found them " inconclusive " . If I

don't get more support from him after our next appointment, I may find

him " conclusively " inadequate, and get another primary care doctor.

I need to find a way to get some of the actual medical papers. I'm

limited at this point because the nearest public medical library (and

only one in Vermont) is across the state, and hasn't yet responded to my

questions as to whether there is any way I could use their services

long-distance. Traveling to the library is impossible-- I don't drive,

and I don't know anyone who would take me there. The only available

public transportation is a bus which takes as long as 7 hours to get

there (I don't think they *make* enough MS Contin for a bus trip like

that), would require a two-day stay before I could return home (i.e. yet

more money for a hotel), and is from a company in flagrant and notorious

defiance of the ADA settlement regarding wheelchair accommodation.

> Unfortunately the carrier denied me anyway,

> and I needed to " move heaven and earth " to get better coverage via a

> PPO. I would hope that a program under government auspices, such as

> Medicaid, might be more responsive, but . . . .?

It depends greatly upon which state you are in. Generally speaking, as a

Medicaid patient you have more rights than the typical HMO patient (of

course, it might be argued that Roman slaves had more rights than the

typical HMO patient). On the other hand by definition you have far fewer

resources (for example, my disability check doesn't provide me with

enough money to pay for an evaluation out of my own pocket and then use

the results to persuade Medicaid to cover the treatment).

>

> Have you tried contacting one of the national revision specialists

> directly to see if s/he could provide appropriate citations? Might

> be worth a try . . .

I am considering this.

I'm also thinking about how to use the doctor's report. I didn't think

the (bluntly) quack would actually put in the report that he recommended

treating flatback with magnets and acupuncture, but he did. As magnets

and acupuncture are not exactly reputable treatments in scoliosis, I'd

think I can at least make an ironclad case that I should not be treated

by *him*.

--

tisoncik@...

[Guest guest]

Sorry to be so late responding- but are we talking

Medicare or Medicaid?

If permanent disability is present you should qualify

for Social Security Disability and therefore MediCARE.

Then you can go to any physician ( I believe)since

it's a federal program. MediCAID is a state program

and may restrict to instate only. I have been on

Medicare since my SS disability was approved.

( Pretty pathetic since I used to treat Medicare

patients and now I'm one of them!)UGH!

I live in NJ and my surgeon practices in NJ/NY. He

bills out of the NYU office. I haven't had problems

with Medicare paying the office visit for out of

state.

Hope this helps!

Lynn

--- elianarefaya <ElianaRefaya@...> wrote:

> Elissa,

>

> Again, my apologies for being so far behind on

> people's posts to this

> list.

>

> I just want to thank you for taking the time and

> trouble to query

> your friend who handled HR/benefits for a large

> corporation.

>

> It's always impressive when someone goes this far

> out of her way in

> endeavoring to help someone else . . . many thanks.

>

> Eliana

>

>

>

>

>

> > >I've just gotten back from the first back

> specialist (note: *not*

> scoliosis

> > >specialist... more on that later) I've seen since

> I was a

> teenager. I found

> > >out that my old Harrington Rod fusion is intact,

> that it runs from

> T4 to L4,

> > >that I have flatback syndrome (oh what a

> surprise, *yawn*), lots

> of arthritis

> > >and general degenerative crappiness, and what he

> called a

> displaced vertebrae

> > >(very visible on the x-rays), which I am guessing

> is a reference to

> > >spondylolisthesis.

> > >

> > >About the only real surprise in all of that was

> the length and

> placement of

> > >my fusion. What I remember being told as a 12

> year old was that

> they fused my

> > >thoracic vertebrae. I'm not too surprised

> though, because I had

> suspected my

> > >fusion wasn't quite where they had told me.

> > >

> > >Now for the fun part: The doctor I saw was a

> spine generalist,

> someone who

> > >deals mostly in slipped discs. He's not a

> scoliosis specialist,

> let alone a

> > >scoliosis revision specialist, which

> unfortunately doesn't stop

> him from

> > >performing scoliosis revision surgeries.

> > >

> > >I need to make a case with Vermont state Medicaid

> (I'm on

> disability) to

> > >allow me to go out-of-state to see a genuine

> bona-fide specialist,

> like Dr.

> > >Rand in Boston. I need information, of the sort

> that I can put in

> an

> > >application to make my case. Does anyone know of

> any authoritative

> sources

> > >that indicate that scoliosis is best treated by

> scoliosis

> specialists, not

> > >scoliosis dabblers?

> > >

> > >--

> > > A. Tisoncik, aka muskie

> > >tisoncik@a...

> > >

> > >

> > >

[Guest guest]

On Mon, 2002-07-08 at 16:53, Lynn K wrote:

> Sorry to be so late responding- but are we talking

> Medicare or Medicaid?

> If permanent disability is present you should qualify

> for Social Security Disability and therefore MediCARE.

> Then you can go to any physician ( I believe)since

> it's a federal program. MediCAID is a state program

> and may restrict to instate only. I have been on

> Medicare since my SS disability was approved.

> ( Pretty pathetic since I used to treat Medicare

> patients and now I'm one of them!)UGH!

> I live in NJ and my surgeon practices in NJ/NY. He

> bills out of the NYU office. I haven't had problems

> with Medicare paying the office visit for out of

> state.

We are talking mediCAID.

It's not correct that a person on permanent disability is necessarily on

mediCARE. If you did not have enough quarters of employment when you

were disabled you will not qualify for SSDI (and Medicare) and will

instead receive SSI (less money, and Medicaid).

That's what happened to me: I was exactly one quarter short. I would

have qualified had I been able to use any of my employment as a

highly-exploited less-than-$1-an-hour off-the-books general laborer and

pizza shop employee during the years I was homeless, but doing that is

pretty much impossible (first I'd have to prove I held the job, then it

would be a matter of going after the employer for back wages owed and

the social security payments that should have been paid. Suffice it to

say that homeless people don't keep a lot of records, and neither do the

slimeballs that exploit their desperation).

You will also receive mediCAID alongside mediCARE if your SSDI income is

so low that you also qualify for SSI.

[Guest guest]

That really stinks.

I know Medicaid in NJ is really bad.

But your right only Soc Sec disabil will qualify for

Medicare.

Lynn

Getting thru

--- tisoncik <tisoncik@...> wrote:

> On Mon, 2002-07-08 at 16:53, Lynn K wrote:

> > Sorry to be so late responding- but are we talking

> > Medicare or Medicaid?

> > If permanent disability is present you should

> qualify

> > for Social Security Disability and therefore

> MediCARE.

> > Then you can go to any physician ( I believe)since

> > it's a federal program. MediCAID is a state

> program

> > and may restrict to instate only. I have been on

> > Medicare since my SS disability was approved.

> > ( Pretty pathetic since I used to treat Medicare

> > patients and now I'm one of them!)UGH!

> > I live in NJ and my surgeon practices in NJ/NY. He

> > bills out of the NYU office. I haven't had

> problems

> > with Medicare paying the office visit for out of

> > state.

>

> We are talking mediCAID.

>

> It's not correct that a person on permanent

> disability is necessarily on

> mediCARE. If you did not have enough quarters of

> employment when you

> were disabled you will not qualify for SSDI (and

> Medicare) and will

> instead receive SSI (less money, and Medicaid).

>

> That's what happened to me: I was exactly one

> quarter short. I would

> have qualified had I been able to use any of my

> employment as a

> highly-exploited less-than-$1-an-hour off-the-books

> general laborer and

> pizza shop employee during the years I was homeless,

> but doing that is

> pretty much impossible (first I'd have to prove I

> held the job, then it

> would be a matter of going after the employer for

> back wages owed and

> the social security payments that should have been

> paid. Suffice it to

> say that homeless people don't keep a lot of

> records, and neither do the

> slimeballs that exploit their desperation).

>

> You will also receive mediCAID alongside mediCARE if

> your SSDI income is

> so low that you also qualify for SSI.

>

>

>

__________________________________________________

[Guest guest]

Of course if it's any consolation, SSI-Medicaid beneficiaries are

more likely than us SSD-Medicare beneficiaries to get any

reimbursement for outpatient medication . . . .

Is supplemental health coverage an option for anyone? I live in

Illinois, where the good supplemental plans are available to those

over 65, but not to younger disabled people, i.e., me. I still

qualify for group coverage by virtue of my ex-husband's employment,

but this gets kind of tricky. Had I not had a PPO plan that included

my revision surgeon, I could not have gone out of state -- the PPO

was the primary carrier, Medicare secondary. I lost a long battle to

get the group HMO that had covered me earlier to allow an out-of-

state trip for surgery. I am a lawyer by profession myself, and I

fought the issue all the way to the end of the appeals process. No

go. The paperwork denying my request was sad, sad, sad -- devoid of

most facts and any logic -- but at that point I was exhausted and the

PPO coverage came through, so I went off to my 16 hours of revision

surgery, Baruch Hashem, thank God . . .

This kind of bureaucratic inadequacy, incoordination, obfuscation,

and so forth makes it so hard to get needed treatment . . . and for

so many people. But lest I clamber too far up on my political

soapbox, I 'll leave it at that for now . . .

Eliana

-- In @y..., Lynn K <drlynn5@y...> wrote:

> That really stinks.

>

> I know Medicaid in NJ is really bad.

>

> But your right only Soc Sec disabil will qualify for

> Medicare.

>

> Lynn

>

> Getting thru

> --- tisoncik <tisoncik@a...> wrote:

> > On Mon, 2002-07-08 at 16:53, Lynn K wrote:

> > > Sorry to be so late responding- but are we talking

> > > Medicare or Medicaid?

> > > If permanent disability is present you should

> > qualify

> > > for Social Security Disability and therefore

> > MediCARE.

> > > Then you can go to any physician ( I believe)since

> > > it's a federal program. MediCAID is a state

> > program

> > > and may restrict to instate only. I have been on

> > > Medicare since my SS disability was approved.

> > > ( Pretty pathetic since I used to treat Medicare

> > > patients and now I'm one of them!)UGH!

> > > I live in NJ and my surgeon practices in NJ/NY. He

> > > bills out of the NYU office. I haven't had

> > problems

> > > with Medicare paying the office visit for out of

> > > state.

> >

> > We are talking mediCAID.

> >

> > It's not correct that a person on permanent

> > disability is necessarily on

> > mediCARE. If you did not have enough quarters of

> > employment when you

> > were disabled you will not qualify for SSDI (and

> > Medicare) and will

> > instead receive SSI (less money, and Medicaid).

> >

> > That's what happened to me: I was exactly one

> > quarter short. I would

> > have qualified had I been able to use any of my

> > employment as a

> > highly-exploited less-than-$1-an-hour off-the-books

> > general laborer and

> > pizza shop employee during the years I was homeless,

> > but doing that is

> > pretty much impossible (first I'd have to prove I

> > held the job, then it

> > would be a matter of going after the employer for

> > back wages owed and

> > the social security payments that should have been

> > paid. Suffice it to

> > say that homeless people don't keep a lot of

> > records, and neither do the

> > slimeballs that exploit their desperation).

> >

> > You will also receive mediCAID alongside mediCARE if

> > your SSDI income is

> > so low that you also qualify for SSI.

> >

> >

> >

>

>

> __________________________________________________

>