Medicaid portability/SOAPBOX!!

[Guest guest]

Cyndi's situation could happen to any one of us. This is a perfect example

of why we need FEDERAL action for Medicaid portability. Not only are

waiting lists ridiculous and another political hot potato, but the fact that

each state (and in some cases counties within states), act like Medicaid is

their own little fiefdom.

I urge you to all at least LOOK at the work being done by those of us who

have chosen to be part of the action.

Check out the list at NOEWAITYAHOOGROUPS (DOT) COM . Join if you can (it's is

free. )

But at least look at what has been accomplished in the few short months that

this list - which is dedicated to two things - END THE WAIT - in every

state and assure portability of MEDICAID Waiver no matter where in the USA

one is living or chooses to live.

Cyndi would never have been in the scary place she were this true.

When I moved from PA to GA, I would not have had to start the process -

which took a year- to help Elie be eligible for Medicaid Waiver and actually

accomplish funding - he was already approved in PA. And we retired.

imagine the horrific choices people are making if their company wants to

transfer them, promote them, deploy them, etc. People are leaving well set

careers because they must have Medicaid support for their child. People who

leave careers for their child are at higher risk of mental health issues,

divorce, spousal abuse and/or abandonment, and child abuse - can find the

research if you doubt me. And so unnecessary.

On Wed, Sep 24, 2008 at 1:15 AM, wrote:

> Hey Group, I just got back from VA with and I read this email

> from Laurie. From what I have read she is in a safe place now and I

> am thankful that someone is coming to her rescue. Barbara thanks for

> the referral to the salvation although I did not use them because I

> was already out of the critical point. Group it is ridiculous that if

> we the caregiver gets sick and are out of town we have no respite.

> Despite the fact that you have Medicaid for your child that comes

> with respite if you fall ill and are out of town there is no contract

> from whatever state you live in with wherever you may be. If your

> child gets sick that will be taken care of but if you get sick you

> are SOL. With the fact that everything is done on computers now days

> this is ridiculous. If you are approved for respite in your state and

> go away and need emergency respite you will not get it unless you pay

> out of pocket. This needs to change. There are several different

> types of medicaid but none of them pay for emergency respite if you

> get sick. Holly Thanks for putting out the SOS from VA for me. I am

> glad to have this circle to connect with. I was truly frighten Sat.

> Sept 13 as I awoke to a terrible pain in my lower side and started to

> black out. I called EMS all the while wondering what would happen to

> my son. I kept making it clear that I would not allow him to be taken

> to foster care if that was even an option. As I lay there in the ER

> awaiting the results of my cat scan I worried about who would take

> care of my son with my family so far away. My family was 10 hours

> away and there are no big airports that fly into that VA city. I kept

> thinking to myself this is awful. We have to get this changed. I do

> have a husband than can help at home but I thought about all the

> single parents trying to raise a child like on their own and how

> frightening that is. We as the main caregivers cannot gets sick

> because there is no help. What do you think needs to happen? Cyndi B

>

>

>

--

Sara - Life is a journey- we choose the path.

[Guest guest]

Sara, Hi, I just read what you wrote about medicaid. Here is what I

was told by the medicaid where I am. The reason that I could not get

respite is there are 100's of different types of medicaid not all

come with respite care. 's does come with respite but only to

licensed/approved/contracted agencies.Va does not contract with my

state. However the medicaid worked said she tried to reach someone in

Va to contract with my state and could not get anyone to

respond.Medicaid should be medicaid where ever you are and in an

emergency no parents should have to wait to get approved or not

approved. We have to change medicaid guidelines to get this changed

ASAP. I was living as a single parent with my husband and daughter

miles away. I needed help but there was none. Now if needed to

be hospitalized his medical card would have paid for that but there

are no provisions for caregivers in an emergency situation. That is

ridiculous. In this day and age of computers there is no excuse for

not being able to get help if you have medicaid with respite no

matter what state you are in.You are right Sara this could happen to

one of us and it did and it never should have. I have had trouble

getting to the noe wait site.Can you help me? Cyndi

>

> Cyndi's situation could happen to any one of us. This is a perfect

example

> of why we need FEDERAL action for Medicaid portability. Not only

are

> waiting lists ridiculous and another political hot potato, but the

fact that

> each state (and in some cases counties within states), act like

Medicaid is

> their own little fiefdom.

>

> I urge you to all at least LOOK at the work being done by those of

us who

> have chosen to be part of the action.

>

> Check out the list at NOEWAIT@... . Join if you can (it's is

> free. )

>

> But at least look at what has been accomplished in the few short

months that

> this list - which is dedicated to two things - END THE WAIT - in

every

> state and assure portability of MEDICAID Waiver no matter where in

the USA

> one is living or chooses to live.

>

> Cyndi would never have been in the scary place she were this true.

>

> When I moved from PA to GA, I would not have had to start the

process -

> which took a year- to help Elie be eligible for Medicaid Waiver and

actually

> accomplish funding - he was already approved in PA. And we retired.

> imagine the horrific choices people are making if their company

wants to

> transfer them, promote them, deploy them, etc. People are leaving

well set

> careers because they must have Medicaid support for their child.

People who

> leave careers for their child are at higher risk of mental health

issues,

> divorce, spousal abuse and/or abandonment, and child abuse - can

find the

> research if you doubt me. And so unnecessary.

>

>

>

>

>

> On Wed, Sep 24, 2008 at 1:15 AM,

wrote:

>

> > Hey Group, I just got back from VA with and I read this

email

> > from Laurie. From what I have read she is in a safe place now and

I

> > am thankful that someone is coming to her rescue. Barbara thanks

for

> > the referral to the salvation although I did not use them because

I

> > was already out of the critical point. Group it is ridiculous

that if

> > we the caregiver gets sick and are out of town we have no respite.

> > Despite the fact that you have Medicaid for your child that comes

> > with respite if you fall ill and are out of town there is no

contract

> > from whatever state you live in with wherever you may be. If your

> > child gets sick that will be taken care of but if you get sick you

> > are SOL. With the fact that everything is done on computers now

days

> > this is ridiculous. If you are approved for respite in your state

and

> > go away and need emergency respite you will not get it unless you

pay

> > out of pocket. This needs to change. There are several different

> > types of medicaid but none of them pay for emergency respite if

you

> > get sick. Holly Thanks for putting out the SOS from VA for me. I

am

> > glad to have this circle to connect with. I was truly frighten

Sat.

> > Sept 13 as I awoke to a terrible pain in my lower side and

started to

> > black out. I called EMS all the while wondering what would happen

to

> > my son. I kept making it clear that I would not allow him to be

taken

> > to foster care if that was even an option. As I lay there in the

ER

> > awaiting the results of my cat scan I worried about who would take

> > care of my son with my family so far away. My family was 10 hours

> > away and there are no big airports that fly into that VA city. I

kept

> > thinking to myself this is awful. We have to get this changed. I

do

> > have a husband than can help at home but I thought about all the

> > single parents trying to raise a child like on their own and

how

> > frightening that is. We as the main caregivers cannot gets sick

> > because there is no help. What do you think needs to happen?

Cyndi B

> >

> >

> >

>

>

>

> --

> Sara - Life is a journey- we choose the path.

>

>

>

[Guest guest]

NOEWAIT

You can go to the site by going to yahoogroups and then type in NOEWAIT or

you can just write to them at the address that I gave you. If that doesn't

work, let me know and I will get you posted. Your story needs tellin.

Was the trip and torture worth it? Did you get valuable, usable info??

Are you feeling better??

On Thu, Oct 2, 2008 at 1:41 AM, wrote:

> Sara, Hi, I just read what you wrote about medicaid. Here is what I

> was told by the medicaid where I am. The reason that I could not get

> respite is there are 100's of different types of medicaid not all

> come with respite care. 's does come with respite but only to

> licensed/approved/contracted agencies.Va does not contract with my

> state. However the medicaid worked said she tried to reach someone in

> Va to contract with my state and could not get anyone to

> respond.Medicaid should be medicaid where ever you are and in an

> emergency no parents should have to wait to get approved or not

> approved. We have to change medicaid guidelines to get this changed

> ASAP. I was living as a single parent with my husband and daughter

> miles away. I needed help but there was none. Now if needed to

> be hospitalized his medical card would have paid for that but there

> are no provisions for caregivers in an emergency situation. That is

> ridiculous. In this day and age of computers there is no excuse for

> not being able to get help if you have medicaid with respite no

> matter what state you are in.You are right Sara this could happen to

> one of us and it did and it never should have. I have had trouble

> getting to the noe wait site.Can you help me? Cyndi

> >

> > Cyndi's situation could happen to any one of us. This is a perfect

> example

> > of why we need FEDERAL action for Medicaid portability. Not only

> are

> > waiting lists ridiculous and another political hot potato, but the

> fact that

> > each state (and in some cases counties within states), act like

> Medicaid is

> > their own little fiefdom.

> >

> > I urge you to all at least LOOK at the work being done by those of

> us who

> > have chosen to be part of the action.

> >

> > Check out the list at NOEWAIT@... . Join if you can (it's is

>

> > free. )

> >

> > But at least look at what has been accomplished in the few short

> months that

> > this list - which is dedicated to two things - END THE WAIT - in

> every

> > state and assure portability of MEDICAID Waiver no matter where in

> the USA

> > one is living or chooses to live.

> >

> > Cyndi would never have been in the scary place she were this true.

> >

> > When I moved from PA to GA, I would not have had to start the

> process -

> > which took a year- to help Elie be eligible for Medicaid Waiver and

> actually

> > accomplish funding - he was already approved in PA. And we retired.

> > imagine the horrific choices people are making if their company

> wants to

> > transfer them, promote them, deploy them, etc. People are leaving

> well set

> > careers because they must have Medicaid support for their child.

> People who

> > leave careers for their child are at higher risk of mental health

> issues,

> > divorce, spousal abuse and/or abandonment, and child abuse - can

> find the

> > research if you doubt me. And so unnecessary.

> >

> >

> >

> >

> >

> > On Wed, Sep 24, 2008 at 1:15 AM,

> wrote:

>

> >

> > > Hey Group, I just got back from VA with and I read this

> email

> > > from Laurie. From what I have read she is in a safe place now and

> I

> > > am thankful that someone is coming to her rescue. Barbara thanks

> for

> > > the referral to the salvation although I did not use them because

> I

> > > was already out of the critical point. Group it is ridiculous

> that if

> > > we the caregiver gets sick and are out of town we have no respite.

> > > Despite the fact that you have Medicaid for your child that comes

> > > with respite if you fall ill and are out of town there is no

> contract

> > > from whatever state you live in with wherever you may be. If your

> > > child gets sick that will be taken care of but if you get sick you

> > > are SOL. With the fact that everything is done on computers now

> days

> > > this is ridiculous. If you are approved for respite in your state

> and

> > > go away and need emergency respite you will not get it unless you

> pay

> > > out of pocket. This needs to change. There are several different

> > > types of medicaid but none of them pay for emergency respite if

> you

> > > get sick. Holly Thanks for putting out the SOS from VA for me. I

> am

> > > glad to have this circle to connect with. I was truly frighten

> Sat.

> > > Sept 13 as I awoke to a terrible pain in my lower side and

> started to

> > > black out. I called EMS all the while wondering what would happen

> to

> > > my son. I kept making it clear that I would not allow him to be

> taken

> > > to foster care if that was even an option. As I lay there in the

> ER

> > > awaiting the results of my cat scan I worried about who would take

> > > care of my son with my family so far away. My family was 10 hours

> > > away and there are no big airports that fly into that VA city. I

> kept

> > > thinking to myself this is awful. We have to get this changed. I

> do

> > > have a husband than can help at home but I thought about all the

> > > single parents trying to raise a child like on their own and

> how

> > > frightening that is. We as the main caregivers cannot gets sick

> > > because there is no help. What do you think needs to happen?

> Cyndi B

> > >

> > >

> > >

> >

> >

> >

> > --

> > Sara - Life is a journey- we choose the path.

> >

> >

> >

[Guest guest]

Sara, Yes the trip was worth it. I would do it all over again to help

my little guy. No one here has been able to get his head healed up

from cellulitis (2) years ago and with HBOT we have done that. He

also started signing for more while in HBOT and said words he has

never said. I can tell that is feeling better due to all the

supplements,etc we are doing. He is more aware of his surroundings

and makes much better eye contact. He no longer comes home from

school crying for 2-3 hours uncontrollably. However he still gets

frustrated and hits himself and we are working on that. The speech

therapist they have at the Rimland is wonderful and she encourages

non-verbal children to speak. All the speech therapist we have seen

even at my request never try to get to talk. Will he ever be

Einstein I do not know but I know that he is much happier than the

road he was on. Yes I am feeling better thanks for asking. I was

scared because I started blacking out and the pain was tremendous. To

be so far away from anyone that could help us and to be unable to

take care of my was very scary. I am glad to be back to mother

earth with family. However if I need to go again to help I

will.My son is improving last night he said the word " Mine " and I

will keep moving forward to help him be the best little guy he can

be.Finally there are people that believe in my son as much as I

do.They talk about his ability and not the disability. I know he is

disabled but I believe if I could have had this help all along

would not be as severe as he is. Mommas gut instinct and 's

abilities show me this. I will let you know if I cannot get on Noe

wait. Thanks Sara, yours truly Cyndi B

> NOEWAIT

>

> You can go to the site by going to yahoogroups and then type in

NOEWAIT or

> you can just write to them at the address that I gave you. If that

doesn't

> work, let me know and I will get you posted. Your story needs

tellin.

>

> Was the trip and torture worth it? Did you get valuable, usable

info??

>

> Are you feeling better??

>

> On Thu, Oct 2, 2008 at 1:41 AM,

wrote:

>

> > Sara, Hi, I just read what you wrote about medicaid. Here is

what I

> > was told by the medicaid where I am. The reason that I could not

get

> > respite is there are 100's of different types of medicaid not all

> > come with respite care. 's does come with respite but only to

> > licensed/approved/contracted agencies.Va does not contract with my

> > state. However the medicaid worked said she tried to reach

someone in

> > Va to contract with my state and could not get anyone to

> > respond.Medicaid should be medicaid where ever you are and in an

> > emergency no parents should have to wait to get approved or not

> > approved. We have to change medicaid guidelines to get this

changed

> > ASAP. I was living as a single parent with my husband and daughter

> > miles away. I needed help but there was none. Now if needed

to

> > be hospitalized his medical card would have paid for that but

there

> > are no provisions for caregivers in an emergency situation. That

is

> > ridiculous. In this day and age of computers there is no excuse

for

> > not being able to get help if you have medicaid with respite no

> > matter what state you are in.You are right Sara this could happen

to

> > one of us and it did and it never should have. I have had trouble

> > getting to the noe wait site.Can you help me? Cyndi

> > >

> > > Cyndi's situation could happen to any one of us. This is a

perfect

> > example

> > > of why we need FEDERAL action for Medicaid portability. Not only

> > are

> > > waiting lists ridiculous and another political hot potato, but

the

> > fact that

> > > each state (and in some cases counties within states), act like

> > Medicaid is

> > > their own little fiefdom.

> > >

> > > I urge you to all at least LOOK at the work being done by those

of

> > us who

> > > have chosen to be part of the action.

> > >

> > > Check out the list at NOEWAIT@ . Join if you can (it's is

> >

> > > free. )

> > >

> > > But at least look at what has been accomplished in the few short

> > months that

> > > this list - which is dedicated to two things - END THE WAIT - in

> > every

> > > state and assure portability of MEDICAID Waiver no matter where

in

> > the USA

> > > one is living or chooses to live.

> > >

> > > Cyndi would never have been in the scary place she were this

true.

> > >

> > > When I moved from PA to GA, I would not have had to start the

> > process -

> > > which took a year- to help Elie be eligible for Medicaid Waiver

and

> > actually

> > > accomplish funding - he was already approved in PA. And we

retired.

> > > imagine the horrific choices people are making if their company

> > wants to

> > > transfer them, promote them, deploy them, etc. People are

leaving

> > well set

> > > careers because they must have Medicaid support for their child.

> > People who

> > > leave careers for their child are at higher risk of mental

health

> > issues,

> > > divorce, spousal abuse and/or abandonment, and child abuse - can

> > find the

> > > research if you doubt me. And so unnecessary.

> > >

> > >

> > >

> > >

> > >

> > > On Wed, Sep 24, 2008 at 1:15 AM,

> > <cynthiamiltonburns@>wrote:

> >

> > >

> > > > Hey Group, I just got back from VA with and I read this

> > email

> > > > from Laurie. From what I have read she is in a safe place now

and

> > I

> > > > am thankful that someone is coming to her rescue. Barbara

thanks

> > for

> > > > the referral to the salvation although I did not use them

because

> > I

> > > > was already out of the critical point. Group it is ridiculous

> > that if

> > > > we the caregiver gets sick and are out of town we have no

respite.

> > > > Despite the fact that you have Medicaid for your child that

comes

> > > > with respite if you fall ill and are out of town there is no

> > contract

> > > > from whatever state you live in with wherever you may be. If

your

> > > > child gets sick that will be taken care of but if you get

sick you

> > > > are SOL. With the fact that everything is done on computers

now

> > days

> > > > this is ridiculous. If you are approved for respite in your

state

> > and

> > > > go away and need emergency respite you will not get it unless

you

> > pay

> > > > out of pocket. This needs to change. There are several

different

> > > > types of medicaid but none of them pay for emergency respite

if

> > you

> > > > get sick. Holly Thanks for putting out the SOS from VA for

me. I

> > am

> > > > glad to have this circle to connect with. I was truly frighten

> > Sat.

> > > > Sept 13 as I awoke to a terrible pain in my lower side and

> > started to

> > > > black out. I called EMS all the while wondering what would

happen

> > to

> > > > my son. I kept making it clear that I would not allow him to

be

> > taken

> > > > to foster care if that was even an option. As I lay there in

the

> > ER

> > > > awaiting the results of my cat scan I worried about who would

take

> > > > care of my son with my family so far away. My family was 10

hours

> > > > away and there are no big airports that fly into that VA

city. I

> > kept

> > > > thinking to myself this is awful. We have to get this

changed. I

> > do

> > > > have a husband than can help at home but I thought about all

the

> > > > single parents trying to raise a child like on their own

and

> > how

> > > > frightening that is. We as the main caregivers cannot gets

sick

> > > > because there is no help. What do you think needs to happen?

> > Cyndi B

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > > --

> > > Sara - Life is a journey- we choose the path.

> > >

> > >

> > >

[Guest guest]

Cyndi,

I will continue to keep you in my prayers that you will not have a set

back especially while you are on a mission here of moving forward with

the alternative biomed interventions and what updated news.

I have finally now been able to receive some wonderful information of

HBOT at the USAAA conference and thought of .

The CARE clinics have already installed the hard chamber HBOT in their

facility but it is still a no go for due to him having

bilateral ear tubes.

Recommendation though was increase his Ozone and PK treatments in lieu

of unable to undergo the HBOT.

Speaker was Dr. Dan Rossignol who actually received his Doctorate of

Medicine at the Medical College of VA and completed his residency in

family medicine at the University of VA. Father of 2 children with

Autism. Anyways, you probably already know this as he is the medical

advisor for the International Hyberbarics Association.

The DADs council committee meeting that I recently attended are now

leaning towards learning more about the alternative biomed

intervention which hopefully would assist with whatever Medicaid

Waiver programs here in Texas. All baby steps though, but then one

never knows with the history of how the economics issues are going on

though. Still, it is nice that some are being open-minded in seeking

other avenues, especially when there is a diagnosis under the autism

spectrum.

May continue doing well with the HBOT treatments.

Irma,20,DS/ASD

>

> Sara, Yes the trip was worth it. I would do it all over again to help

> my little guy. No one here has been able to get his head healed up

> from cellulitis (2) years ago and with HBOT we have done that. He

> also started signing for more while in HBOT and said words he has

> never said. I can tell that is feeling better due to all the

> supplements,etc we are doing. He is more aware of his surroundings

> and makes much better eye contact. He no longer comes home from

> school crying for 2-3 hours uncontrollably. However he still gets

> frustrated and hits himself and we are working on that. The speech

> therapist they have at the Rimland is wonderful and she encourages

> non-verbal children to speak. All the speech therapist we have seen

> even at my request never try to get to talk. Will he ever be

> Einstein I do not know but I know that he is much happier than the

> road he was on. Yes I am feeling better thanks for asking. I was

> scared because I started blacking out and the pain was tremendous. To

> be so far away from anyone that could help us and to be unable to

> take care of my was very scary. I am glad to be back to mother

> earth with family. However if I need to go again to help I

> will.My son is improving last night he said the word " Mine " and I

> will keep moving forward to help him be the best little guy he can

> be.Finally there are people that believe in my son as much as I

> do.They talk about his ability and not the disability. I know he is

> disabled but I believe if I could have had this help all along

> would not be as severe as he is. Mommas gut instinct and 's

> abilities show me this. I will let you know if I cannot get on Noe

> wait. Thanks Sara, yours truly Cyndi B

[Guest guest]

Irma, loved doing the Hbot and we did a starting low dose. They

did keep and eye on his ears throughout the 40 HBot treatments. His

head healed nicely but now he is getting a staph infection back on

his face and I it looks like it is spreading to the head. Now I keep

his head covered all day and night. But when he gets a bath I take it

off to wash his head. We are doing probiotics 1x daily to build up

his immune system. Sorry can't get HBOT. Maybe someday soon if

it is a lower pressure he could. What about oxygen mask. I talked

with DR. Mumper about the differenc and her response was that you

loose some oxygen around the mask so you are not getting 100% but it

still can help wake up the brain. actually signed for more in

the HBOT while he was feeding himself popcorn. I laughed and said

good signing but if you want more popcorn you are feeding it to

yourself. has never attempted signing because of being tactile

defensive. He is not talking like your or I but he is saying words he

has never said. Are the HBOT chambers they are getting single people

are multiple people? Cyndi B

>

> Cyndi,

>

> I will continue to keep you in my prayers that you will not have a

set

> back especially while you are on a mission here of moving forward

with

> the alternative biomed interventions and what updated news.

>

> I have finally now been able to receive some wonderful information

of

> HBOT at the USAAA conference and thought of .

> The CARE clinics have already installed the hard chamber HBOT in

their

> facility but it is still a no go for due to him having

> bilateral ear tubes.

> Recommendation though was increase his Ozone and PK treatments in

lieu

> of unable to undergo the HBOT.

> Speaker was Dr. Dan Rossignol who actually received his Doctorate of

> Medicine at the Medical College of VA and completed his residency in

> family medicine at the University of VA. Father of 2 children with

> Autism. Anyways, you probably already know this as he is the medical

> advisor for the International Hyberbarics Association.

>

> The DADs council committee meeting that I recently attended are now

> leaning towards learning more about the alternative biomed

> intervention which hopefully would assist with whatever Medicaid

> Waiver programs here in Texas. All baby steps though, but then one

> never knows with the history of how the economics issues are going

on

> though. Still, it is nice that some are being open-minded in seeking

> other avenues, especially when there is a diagnosis under the autism

> spectrum.

>

> May continue doing well with the HBOT treatments.

>

> Irma,20,DS/ASD

>

>

>

> >

> > Sara, Yes the trip was worth it. I would do it all over again to

help

> > my little guy. No one here has been able to get his head healed

up

> > from cellulitis (2) years ago and with HBOT we have done that. He

> > also started signing for more while in HBOT and said words he has

> > never said. I can tell that is feeling better due to all the

> > supplements,etc we are doing. He is more aware of his

surroundings

> > and makes much better eye contact. He no longer comes home from

> > school crying for 2-3 hours uncontrollably. However he still gets

> > frustrated and hits himself and we are working on that. The

speech

> > therapist they have at the Rimland is wonderful and she

encourages

> > non-verbal children to speak. All the speech therapist we have

seen

> > even at my request never try to get to talk. Will he ever be

> > Einstein I do not know but I know that he is much happier than

the

> > road he was on. Yes I am feeling better thanks for asking. I was

> > scared because I started blacking out and the pain was

tremendous. To

> > be so far away from anyone that could help us and to be unable

to

> > take care of my was very scary. I am glad to be back to

mother

> > earth with family. However if I need to go again to help I

> > will.My son is improving last night he said the word " Mine " and I

> > will keep moving forward to help him be the best little guy he

can

> > be.Finally there are people that believe in my son as much as I

> > do.They talk about his ability and not the disability. I know he

is

> > disabled but I believe if I could have had this help all along

> > would not be as severe as he is. Mommas gut instinct and 's

> > abilities show me this. I will let you know if I cannot get on

Noe

> > wait. Thanks Sara, yours truly Cyndi B

>