RE: Help! Beckett Waiver / clinical studies question

[Guest guest]

I have Beckett for my 5 year old. They ask the income, but it

does not count--in our area there is a 2-3 year waiting list-- the

government sets aside only a certain amount of slots per city or county

district.

It is an arduous process- you have to be deemed medically eligible by a

visiting nurse who is part of the program and then complete the

financial paperwork-- they are looking for assets the child has, because

child assets disqualify you.

Once you are qualified (and you have to re-qualify medically every 6

months), you pay almost nothing at all---they will approve DRs as long

as they are Medicaid providers or are part of a research hospital staff.

If you need more info, please let me know

L

________________________________

From: [mailto: ] On

Behalf Of cerdaclan

Sent: Monday, October 30, 2006 12:24 PM

Subject: Help! Beckett Waiver / clinical studies

question

well...I figure I don't get the chance to come in her

lately...so I

may as well get it all over with in one fail swoop.

This past two weeks, I have been unendated with calls from 3

local

families, previous unknown cohorts, battling PID in their young

children. We all have the same problem...the medical system here

in

Nevada stinks and we are all " victims " of it. All of us have

lost

nearly everything we own....two of the families cannot get the

children's medications.....one of them is another law

enforcement

family that has no choice for health insurance and are in

trouble.

All that being said....all three of us are applying for the

"

Beckett Waiver " . The people we are working with seem confused

and

not very knowledgeable. My understanding is that the waiver is

for

the children and the decision has no basis on my husbands income

level (as no income level could sustain the medical bills we

have).

But, when I got the enormous pile of forms to fill out....it is

all

financial stuff about my husbands income and our tax returns.

How

is this so? Sure seems to me like they are looking at income.

Can

anyone who has applied and gotten the waiver fill in the blanks

on

the why? Should we be getting grilled about finances? Are there

any secrets we should know to having success? I was told by

someone

(not through welfare...someone here) that we have to show that

we

provide 3 nursing level care activites here at home for each

child.

What would be considered? I know their SCIG would be....would

the

nebulizer treatment be one? I have heard that Molly's

sleepwalking

would be one....would their need for constant dietart

modification

be one...trying to keep them pooping appropriately(sorry)? Does

the

requirement for homeschooling factor in anywhere? Any feedback

would be oh so greatly appreciated.

Medical Research: The reason I am asking is because I am writing

an

article for IG Living about Medical Research, including the

current

studies that are being recruited for. I have done interviews

with

NIH and the Human Genome folks as well as others, but I would

love

to talk to some individuals or families that have taken part in

Immune Deficiency Research studies. So if there is anyone who

would

like to help out, please let me know.

[Guest guest]

Okay- I am new here, but have some info for you. A lot depends on

the state. We live in IL and they do not have the becett

waiver per say they have there own Through DSCC which is the office

who handels it.

We were told that We as a family are the middle class nightmare. We

can not afford bills but we still own our own home and have

cars. So that being said. I went through six months of paperwork and

a lot of hoops. The only reason qualifies for this waiver is he

gets nursing 40 hrs a week. It was the only way for us to get

medicad as our secoundary. HE has a double lumin central line and

requires numerous Iv meds and someone with him at all times. I know

in Ohio you have to get nursing also to get secoundary medicade.

Unless yu qualify by income level. I also believe in Indiana iit is

the same. They can not base the waiver on income, but we did have to

file fiancial papers and tax returns and bank statements. When we

went to the state office we had to specifcally tell them this could

not be based on income as it was the waiver. The people looked at us

like we were crazy. But it went through.

Do you need nursing????? And will your Doc write a letter??? And you

need to check about the wait list. Any thing else let me know.

and

>

> well...I figure I don't get the chance to come in her lately...so

I

> may as well get it all over with in one fail swoop.

>

> This past two weeks, I have been unendated with calls from 3 local

> families, previous unknown cohorts, battling PID in their young

> children. We all have the same problem...the medical system here

in

> Nevada stinks and we are all " victims " of it. All of us have lost

> nearly everything we own....two of the families cannot get the

> children's medications.....one of them is another law enforcement

> family that has no choice for health insurance and are in

trouble.

> All that being said....all three of us are applying for the "

> Beckett Waiver " . The people we are working with seem confused and

> not very knowledgeable. My understanding is that the waiver is

for

> the children and the decision has no basis on my husbands income

> level (as no income level could sustain the medical bills we

have).

> But, when I got the enormous pile of forms to fill out....it is

all

> financial stuff about my husbands income and our tax returns. How

> is this so? Sure seems to me like they are looking at income.

Can

> anyone who has applied and gotten the waiver fill in the blanks on

> the why? Should we be getting grilled about finances? Are there

> any secrets we should know to having success? I was told by

someone

> (not through welfare...someone here) that we have to show that we

> provide 3 nursing level care activites here at home for each

child.

> What would be considered? I know their SCIG would be....would the

> nebulizer treatment be one? I have heard that Molly's

sleepwalking

> would be one....would their need for constant dietart modification

> be one...trying to keep them pooping appropriately(sorry)? Does

the

> requirement for homeschooling factor in anywhere? Any feedback

> would be oh so greatly appreciated.

>

> Medical Research: The reason I am asking is because I am writing

an

> article for IG Living about Medical Research, including the

current

> studies that are being recruited for. I have done interviews with

> NIH and the Human Genome folks as well as others, but I would love

> to talk to some individuals or families that have taken part in

> Immune Deficiency Research studies. So if there is anyone who

would

> like to help out, please let me know.

>

[Guest guest]

We are involved in a National Institute of Health clinical

history/screening study for Magenis Syndrome with Ann ---is

this the kind of thing you are looking for or just studies for PIDs

only?

L

________________________________

From: [mailto: ] On

Behalf Of cerdaclan

Sent: Monday, October 30, 2006 12:24 PM

Subject: Help! Beckett Waiver / clinical studies

question

well...I figure I don't get the chance to come in her

lately...so I

may as well get it all over with in one fail swoop.

This past two weeks, I have been unendated with calls from 3

local

families, previous unknown cohorts, battling PID in their young

children. We all have the same problem...the medical system here

in

Nevada stinks and we are all " victims " of it. All of us have

lost

nearly everything we own....two of the families cannot get the

children's medications.....one of them is another law

enforcement

family that has no choice for health insurance and are in

trouble.

All that being said....all three of us are applying for the

"

Beckett Waiver " . The people we are working with seem confused

and

not very knowledgeable. My understanding is that the waiver is

for

the children and the decision has no basis on my husbands income

level (as no income level could sustain the medical bills we

have).

But, when I got the enormous pile of forms to fill out....it is

all

financial stuff about my husbands income and our tax returns.

How

is this so? Sure seems to me like they are looking at income.

Can

anyone who has applied and gotten the waiver fill in the blanks

on

the why? Should we be getting grilled about finances? Are there

any secrets we should know to having success? I was told by

someone

(not through welfare...someone here) that we have to show that

we

provide 3 nursing level care activites here at home for each

child.

What would be considered? I know their SCIG would be....would

the

nebulizer treatment be one? I have heard that Molly's

sleepwalking

would be one....would their need for constant dietart

modification

be one...trying to keep them pooping appropriately(sorry)? Does

the

requirement for homeschooling factor in anywhere? Any feedback

would be oh so greatly appreciated.

Medical Research: The reason I am asking is because I am writing

an

article for IG Living about Medical Research, including the

current

studies that are being recruited for. I have done interviews

with

NIH and the Human Genome folks as well as others, but I would

love

to talk to some individuals or families that have taken part in

Immune Deficiency Research studies. So if there is anyone who

would

like to help out, please let me know.

[Guest guest]

,

Hello, I was wondering how the phisohex is working for your son is he any

better?

Towma

Ladden <LLadden@...> wrote:

We are involved in a National Institute of Health clinical

history/screening study for Magenis Syndrome with Ann ---is

this the kind of thing you are looking for or just studies for PIDs

only?

L

________________________________

From: [mailto: ] On

Behalf Of cerdaclan

Sent: Monday, October 30, 2006 12:24 PM

Subject: Help! Beckett Waiver / clinical studies

question

well...I figure I don't get the chance to come in her

lately...so I

may as well get it all over with in one fail swoop.

This past two weeks, I have been unendated with calls from 3

local

families, previous unknown cohorts, battling PID in their young

children. We all have the same problem...the medical system here

in

Nevada stinks and we are all " victims " of it. All of us have

lost

nearly everything we own....two of the families cannot get the

children's medications.....one of them is another law

enforcement

family that has no choice for health insurance and are in

trouble.

All that being said....all three of us are applying for the

"

Beckett Waiver " . The people we are working with seem confused

and

not very knowledgeable. My understanding is that the waiver is

for

the children and the decision has no basis on my husbands income

level (as no income level could sustain the medical bills we

have).

But, when I got the enormous pile of forms to fill out....it is

all

financial stuff about my husbands income and our tax returns.

How

is this so? Sure seems to me like they are looking at income.

Can

anyone who has applied and gotten the waiver fill in the blanks

on

the why? Should we be getting grilled about finances? Are there

any secrets we should know to having success? I was told by

someone

(not through welfare...someone here) that we have to show that

we

provide 3 nursing level care activites here at home for each

child.

What would be considered? I know their SCIG would be....would

the

nebulizer treatment be one? I have heard that Molly's

sleepwalking

would be one....would their need for constant dietart

modification

be one...trying to keep them pooping appropriately(sorry)? Does

the

requirement for homeschooling factor in anywhere? Any feedback

would be oh so greatly appreciated.

Medical Research: The reason I am asking is because I am writing

an

article for IG Living about Medical Research, including the

current

studies that are being recruited for. I have done interviews

with

NIH and the Human Genome folks as well as others, but I would

love

to talk to some individuals or families that have taken part in

Immune Deficiency Research studies. So if there is anyone who

would

like to help out, please let me know.

[Guest guest]

We are also in the process of trying to get the Becket waiver

here in Texas. There is an 8 year waiting list we have been on for 3

years. I found out about something the state legislature did to make

a loophole for families like ours. It is called a rider 28. This

states that if the child is in a full time nursing facility for as

little as 24 hours when they are released they automatically get the

waiver within 24 hours of release, and bypass the waiting list. This

does not mean the child is so severely ill they are on a vent bed

bound. My kids have good days and bad and I told them they may be

fine the day this comes together and we have to go into the nursing

home. They said it does not matter, if they are approved as being

medically needy, requiring ongoing care and meds and close dr

supervision it should be OK. We go in one night, and are released

the next day after their dr writes a letter saying it is in their

best interest to be cared for at home. You have to get all your

ducks in a row, and get the dr on board and jump through many hoops.

You also have to prove you need on going in home care. At first this

bugged me because I do everything and did not want a stranger coming

in to my house, but I found out you can get your own family and

friends that usually help, and the state will pay them to help you

with your kids. The whole point of Beckett waiver is to show

you have need for respite help, or in home nursing. They do get the

income info, but it does not count against you as long as your kids

themselves do not have any money. If your kids do have college funds

or such you may need to transfer anything in their name over to you.

Hope you can get it worked out. Look on your states website about

the dept of aged and disabled. That is where I found the info about

this loophole. Also, we are like so many here where we would drown

in debt without medicaid. Currently my kids are on SSi disability

and get medicaid, but we have gone broke staying in the income

limits. My husband finally took the salary he was owed because we

can't live anymore within the limits, that is why we are desparately

trying to find a way to keep the medicaid as secondary. If this

whole waiver program blows up we know we can't lose their medicaid,

we will be out around $2000 a month, just regularly without

hospitalizations. In talking with SSI they will tell you themselves

that many people get divorced or separated to keep their kids

benefits. We do not want to do this and are doing everything

possible not to. But they say flat out if you have two different

residences, and say you are separted, it will only go by the income

of the parent they are " living " with. As I said I want to be honest

about everything, but these benefits are my kids lives, they will

die without them. Just wanted to let people know their are things

that can help when the situaiton is desparate, and their are no

programs you can get.

>

> well...I figure I don't get the chance to come in her lately...so

I

> may as well get it all over with in one fail swoop.

>

> This past two weeks, I have been unendated with calls from 3 local

> families, previous unknown cohorts, battling PID in their young

> children. We all have the same problem...the medical system here

in

> Nevada stinks and we are all " victims " of it. All of us have lost

> nearly everything we own....two of the families cannot get the

> children's medications.....one of them is another law enforcement

> family that has no choice for health insurance and are in

trouble.

> All that being said....all three of us are applying for the "

> Beckett Waiver " . The people we are working with seem confused and

> not very knowledgeable. My understanding is that the waiver is

for

> the children and the decision has no basis on my husbands income

> level (as no income level could sustain the medical bills we

have).

> But, when I got the enormous pile of forms to fill out....it is

all

> financial stuff about my husbands income and our tax returns. How

> is this so? Sure seems to me like they are looking at income.

Can

> anyone who has applied and gotten the waiver fill in the blanks on

> the why? Should we be getting grilled about finances? Are there

> any secrets we should know to having success? I was told by

someone

> (not through welfare...someone here) that we have to show that we

> provide 3 nursing level care activites here at home for each

child.

> What would be considered? I know their SCIG would be....would the

> nebulizer treatment be one? I have heard that Molly's

sleepwalking

> would be one....would their need for constant dietart modification

> be one...trying to keep them pooping appropriately(sorry)? Does

the

> requirement for homeschooling factor in anywhere? Any feedback

> would be oh so greatly appreciated.

>

> Medical Research: The reason I am asking is because I am writing

an

> article for IG Living about Medical Research, including the

current

> studies that are being recruited for. I have done interviews with

> NIH and the Human Genome folks as well as others, but I would love

> to talk to some individuals or families that have taken part in

> Immune Deficiency Research studies. So if there is anyone who

would

> like to help out, please let me know.

>

[Guest guest]

We are also in the process of trying to get the Becket waiver

here in Texas. There is an 8 year waiting list we have been on for 3

years. I found out about something the state legislature did to make

a loophole for families like ours. It is called a rider 28. This

states that if the child is in a full time nursing facility for as

little as 24 hours when they are released they automatically get the

waiver within 24 hours of release, and bypass the waiting list. This

does not mean the child is so severely ill they are on a vent bed

bound. My kids have good days and bad and I told them they may be

fine the day this comes together and we have to go into the nursing

home. They said it does not matter, if they are approved as being

medically needy, requiring ongoing care and meds and close dr

supervision it should be OK. We go in one night, and are released

the next day after their dr writes a letter saying it is in their

best interest to be cared for at home. You have to get all your

ducks in a row, and get the dr on board and jump through many hoops.

You also have to prove you need on going in home care. At first this

bugged me because I do everything and did not want a stranger coming

in to my house, but I found out you can get your own family and

friends that usually help, and the state will pay them to help you

with your kids. The whole point of Beckett waiver is to show

you have need for respite help, or in home nursing. They do get the

income info, but it does not count against you as long as your kids

themselves do not have any money. If your kids do have college funds

or such you may need to transfer anything in their name over to you.

Hope you can get it worked out. Look on your states website about

the dept of aged and disabled. That is where I found the info about

this loophole. Also, we are like so many here where we would drown

in debt without medicaid. Currently my kids are on SSi disability

and get medicaid, but we have gone broke staying in the income

limits. My husband finally took the salary he was owed because we

can't live anymore within the limits, that is why we are desparately

trying to find a way to keep the medicaid as secondary. If this

whole waiver program blows up we know we can't lose their medicaid,

we will be out around $2000 a month, just regularly without

hospitalizations. In talking with SSI they will tell you themselves

that many people get divorced or separated to keep their kids

benefits. We do not want to do this and are doing everything

possible not to. But they say flat out if you have two different

residences, and say you are separted, it will only go by the income

of the parent they are " living " with. As I said I want to be honest

about everything, but these benefits are my kids lives, they will

die without them. Just wanted to let people know their are things

that can help when the situaiton is desparate, and their are no

programs you can get.

>

> well...I figure I don't get the chance to come in her lately...so

I

> may as well get it all over with in one fail swoop.

>

> This past two weeks, I have been unendated with calls from 3 local

> families, previous unknown cohorts, battling PID in their young

> children. We all have the same problem...the medical system here

in

> Nevada stinks and we are all " victims " of it. All of us have lost

> nearly everything we own....two of the families cannot get the

> children's medications.....one of them is another law enforcement

> family that has no choice for health insurance and are in

trouble.

> All that being said....all three of us are applying for the "

> Beckett Waiver " . The people we are working with seem confused and

> not very knowledgeable. My understanding is that the waiver is

for

> the children and the decision has no basis on my husbands income

> level (as no income level could sustain the medical bills we

have).

> But, when I got the enormous pile of forms to fill out....it is

all

> financial stuff about my husbands income and our tax returns. How

> is this so? Sure seems to me like they are looking at income.

Can

> anyone who has applied and gotten the waiver fill in the blanks on

> the why? Should we be getting grilled about finances? Are there

> any secrets we should know to having success? I was told by

someone

> (not through welfare...someone here) that we have to show that we

> provide 3 nursing level care activites here at home for each

child.

> What would be considered? I know their SCIG would be....would the

> nebulizer treatment be one? I have heard that Molly's

sleepwalking

> would be one....would their need for constant dietart modification

> be one...trying to keep them pooping appropriately(sorry)? Does

the

> requirement for homeschooling factor in anywhere? Any feedback

> would be oh so greatly appreciated.

>

> Medical Research: The reason I am asking is because I am writing

an

> article for IG Living about Medical Research, including the

current

> studies that are being recruited for. I have done interviews with

> NIH and the Human Genome folks as well as others, but I would love

> to talk to some individuals or families that have taken part in

> Immune Deficiency Research studies. So if there is anyone who

would

> like to help out, please let me know.

>

[Guest guest]

the phisohex is working great. Thank you for asking!! His skin has

never been clearer. The problem I am having (besides every 2 week sinus

and ear infections) is that one of the manifestations of Magenis

syndrome is ripping at finger nails and toe nails--I tape his AFO socks

to the afos with 2inch micropore tape and put him to bed with socks

under foot pjs. Now his so focused on his fingers that he is getting

infected cuticles and staph pustules all over his hands-- I wash them

with phisohex, use hand sanitizers, was swabbing the cuticles with

Neosporin twice daily to try to prevent him from 'getting a grip at the

skin at the cuticle site', but now I am using Bactroban because he is

getting staph pustules daily--

Anyone have any ideas?

We are awaiting mutation studies for Magenis that may shed some

light on the immune defect as well. We are doing weekly scig and full

dose Ceftin and full dose Diflucan for the foreseeable future.

________________________________

From: [mailto: ] On

Behalf Of Towma Rastad

Sent: Tuesday, October 31, 2006 11:26 AM

Subject: RE: Help! Beckett Waiver / clinical

studies question

,

Hello, I was wondering how the phisohex is working for your son

is he any better?

Towma

Ladden <LLadden@...

<mailto:LLadden%40connexintl.com> > wrote:

We are involved in a National Institute of Health clinical

history/screening study for Magenis Syndrome with Ann

---is

this the kind of thing you are looking for or just studies for

PIDs

only?

L

________________________________

From: <mailto:%40>

[mailto: <mailto:%40> ] On

Behalf Of cerdaclan

Sent: Monday, October 30, 2006 12:24 PM

<mailto:%40>

Subject: Help! Beckett Waiver / clinical studies

question

well...I figure I don't get the chance to come in her

lately...so I

may as well get it all over with in one fail swoop.

This past two weeks, I have been unendated with calls from 3

local

families, previous unknown cohorts, battling PID in their young

children. We all have the same problem...the medical system here

in

Nevada stinks and we are all " victims " of it. All of us have

lost

nearly everything we own....two of the families cannot get the

children's medications.....one of them is another law

enforcement

family that has no choice for health insurance and are in

trouble.

All that being said....all three of us are applying for the

"

Beckett Waiver " . The people we are working with seem confused

and

not very knowledgeable. My understanding is that the waiver is

for

the children and the decision has no basis on my husbands income

level (as no income level could sustain the medical bills we

have).

But, when I got the enormous pile of forms to fill out....it is

all

financial stuff about my husbands income and our tax returns.

How

is this so? Sure seems to me like they are looking at income.

Can

anyone who has applied and gotten the waiver fill in the blanks

on

the why? Should we be getting grilled about finances? Are there

any secrets we should know to having success? I was told by

someone

(not through welfare...someone here) that we have to show that

we

provide 3 nursing level care activites here at home for each

child.

What would be considered? I know their SCIG would be....would

the

nebulizer treatment be one? I have heard that Molly's

sleepwalking

would be one....would their need for constant dietart

modification

be one...trying to keep them pooping appropriately(sorry)? Does

the

requirement for homeschooling factor in anywhere? Any feedback

would be oh so greatly appreciated.

Medical Research: The reason I am asking is because I am writing

an

article for IG Living about Medical Research, including the

current

studies that are being recruited for. I have done interviews

with

NIH and the Human Genome folks as well as others, but I would

love

to talk to some individuals or families that have taken part in

Immune Deficiency Research studies. So if there is anyone who

would

like to help out, please let me know.

[Guest guest]

Terri,

Some states don't allow the Beckett Waiver....ND does not. If you

would like, I can forward this email to my friend at Family Voices of

ND....she is working on a lot of these issues....I need your permission

to forward.

The new Family opportunity act that was passed hopefully will help out

families like us...It's my understanding that we need to get a denial

from SS...get the medically approved, but denied due to financial and

then that will allow the Fam. opp. act to kick in...However, this was

passed, but isn't implemented yet.

Someone that I know here can buy into medicaid but there monthly copay

recipient liability would be 3600.00. Email me at work...I am so far

behind on these emails...

lschatz@...

S

Help! Beckett Waiver / clinical studies question

well...I figure I don't get the chance to come in her lately...so I

may as well get it all over with in one fail swoop.

This past two weeks, I have been unendated with calls from 3 local

families, previous unknown cohorts, battling PID in their young

children. We all have the same problem...the medical system here in

Nevada stinks and we are all " victims " of it. All of us have lost

nearly everything we own....two of the families cannot get the

children's medications.....one of them is another law enforcement

family that has no choice for health insurance and are in trouble.

All that being said....all three of us are applying for the "

Beckett Waiver " . The people we are working with seem confused and

not very knowledgeable. My understanding is that the waiver is for

the children and the decision has no basis on my husbands income

level (as no income level could sustain the medical bills we have).

But, when I got the enormous pile of forms to fill out....it is all

financial stuff about my husbands income and our tax returns. How

is this so? Sure seems to me like they are looking at income. Can

anyone who has applied and gotten the waiver fill in the blanks on

the why? Should we be getting grilled about finances? Are there

any secrets we should know to having success? I was told by someone

(not through welfare...someone here) that we have to show that we

provide 3 nursing level care activites here at home for each child.

What would be considered? I know their SCIG would be....would the

nebulizer treatment be one? I have heard that Molly's sleepwalking

would be one....would their need for constant dietart modification

be one...trying to keep them pooping appropriately(sorry)? Does the

requirement for homeschooling factor in anywhere? Any feedback

would be oh so greatly appreciated.

Medical Research: The reason I am asking is because I am writing an

article for IG Living about Medical Research, including the current

studies that are being recruited for. I have done interviews with

NIH and the Human Genome folks as well as others, but I would love

to talk to some individuals or families that have taken part in

Immune Deficiency Research studies. So if there is anyone who would

like to help out, please let me know.

[Guest guest]

Hi ,

I can't email you because my outlook is not working and I have to

copy and e-mail addy over to my mail account to e-mail anyone

and unfortunately your full e-mail addy won't come u.

Anyway, I think we are going to be ok. We do have availability of

the Beckett Waiver here in Nevada. Currently, there are 3

families here with CVID applying for it. I got very lucky the other

day when, out of the blue, the Nevada Childhood Cancer FOundation

called me and they are going to help us make sure we get everything

we need to get the waiver. What is really great is that we applied

for, and were turned down for, SSI in 2004. So if they go back that

far, it would be incredible for us. Additionally, they are helping

us apply for an IEP evaluation for the girls and they are actually

going to have an " advocate " there during the evaluation to make

certain that we get everything that we feel appropriate for Molly.

They are going to make certain that they write the IEP on the spot

and that it is approved and signed the same day as the evaluation.

I am so excited about this as we had such a terrible time with the

Homebound program through the school district last year.

If we get all of our ducks in line, there may actually be a light at

the end of the tunnel for all of our struggles these past two years.

Terri (Mom, Molly 6 and Maggie 4 CVIDers)

>

> Terri,

>

> Some states don't allow the Beckett Waiver....ND does not.

If you

> would like, I can forward this email to my friend at Family Voices

of

> ND....she is working on a lot of these issues....I need your

permission

> to forward.

>

>

> The new Family opportunity act that was passed hopefully will help

out

> families like us...It's my understanding that we need to get a

denial

> from SS...get the medically approved, but denied due to financial

and

> then that will allow the Fam. opp. act to kick in...However, this

was

> passed, but isn't implemented yet.

>

> Someone that I know here can buy into medicaid but there monthly

copay

> recipient liability would be 3600.00. Email me at work...I am so

far

> behind on these emails...

>

> lschatz@...

>

> S

>

>

> Help! Beckett Waiver / clinical studies

question

>

>

>

> well...I figure I don't get the chance to come in her lately...so

I

> may as well get it all over with in one fail swoop.

>

> This past two weeks, I have been unendated with calls from 3 local

> families, previous unknown cohorts, battling PID in their young

> children. We all have the same problem...the medical system here

in

> Nevada stinks and we are all " victims " of it. All of us have lost

> nearly everything we own....two of the families cannot get the

> children's medications.....one of them is another law enforcement

> family that has no choice for health insurance and are in trouble.

> All that being said....all three of us are applying for the "

> Beckett Waiver " . The people we are working with seem confused and

> not very knowledgeable. My understanding is that the waiver is for

> the children and the decision has no basis on my husbands income

> level (as no income level could sustain the medical bills we

have).

> But, when I got the enormous pile of forms to fill out....it is

all

> financial stuff about my husbands income and our tax returns. How

> is this so? Sure seems to me like they are looking at income. Can

> anyone who has applied and gotten the waiver fill in the blanks on

> the why? Should we be getting grilled about finances? Are there

> any secrets we should know to having success? I was told by

someone

> (not through welfare...someone here) that we have to show that we

> provide 3 nursing level care activites here at home for each

child.

> What would be considered? I know their SCIG would be....would the

> nebulizer treatment be one? I have heard that Molly's sleepwalking

> would be one....would their need for constant dietart modification

> be one...trying to keep them pooping appropriately(sorry)? Does

the

> requirement for homeschooling factor in anywhere? Any feedback

> would be oh so greatly appreciated.

>

> Medical Research: The reason I am asking is because I am writing

an

> article for IG Living about Medical Research, including the

current

> studies that are being recruited for. I have done interviews with

> NIH and the Human Genome folks as well as others, but I would love

> to talk to some individuals or families that have taken part in

> Immune Deficiency Research studies. So if there is anyone who

would

> like to help out, please let me know.

>

>

>

>

>

>

>

>

[Guest guest]

Thanks Terri,

Glad it is working out for you...I am still trying to put out fires here is

terms of both ighand . Am somewhat scared about our upcoming appts

next week and all the cafe au lait spots....Worried...but will cross that

bridge.

Hang in there.

My work email is lschatz@...

I'm having trouble keeping up as am working this job full time and picking up

other shifts to cover the loss of pay here for the increase in insurance...a

juggling act.

Quoting cerdaclan <tcerda@...>:

> Hi ,

>

> I can't email you because my outlook is not working and I have to

> copy and e-mail addy over to my mail account to e-mail anyone

> and unfortunately your full e-mail addy won't come u.

>

> Anyway, I think we are going to be ok. We do have availability of

> the Beckett Waiver here in Nevada. Currently, there are 3

> families here with CVID applying for it. I got very lucky the other

> day when, out of the blue, the Nevada Childhood Cancer FOundation

> called me and they are going to help us make sure we get everything

> we need to get the waiver. What is really great is that we applied

> for, and were turned down for, SSI in 2004. So if they go back that

> far, it would be incredible for us. Additionally, they are helping

> us apply for an IEP evaluation for the girls and they are actually

> going to have an " advocate " there during the evaluation to make

> certain that we get everything that we feel appropriate for Molly.

> They are going to make certain that they write the IEP on the spot

> and that it is approved and signed the same day as the evaluation.

> I am so excited about this as we had such a terrible time with the

> Homebound program through the school district last year.

>

> If we get all of our ducks in line, there may actually be a light at

> the end of the tunnel for all of our struggles these past two years.

>

> Terri (Mom, Molly 6 and Maggie 4 CVIDers)

> >

> > Terri,

> >

> > Some states don't allow the Beckett Waiver....ND does not.

> If you

> > would like, I can forward this email to my friend at Family Voices

> of

> > ND....she is working on a lot of these issues....I need your

> permission

> > to forward.

> >

> >

> > The new Family opportunity act that was passed hopefully will help

> out

> > families like us...It's my understanding that we need to get a

> denial

> > from SS...get the medically approved, but denied due to financial

> and

> > then that will allow the Fam. opp. act to kick in...However, this

> was

> > passed, but isn't implemented yet.

> >

> > Someone that I know here can buy into medicaid but there monthly

> copay

> > recipient liability would be 3600.00. Email me at work...I am so

> far

> > behind on these emails...

> >

> > lschatz@...

> >

> > S

> >

> >

> > Help! Beckett Waiver / clinical studies

> question

> >

> >

> >

> > well...I figure I don't get the chance to come in her lately...so

> I

> > may as well get it all over with in one fail swoop.

> >

> > This past two weeks, I have been unendated with calls from 3 local

> > families, previous unknown cohorts, battling PID in their young

> > children. We all have the same problem...the medical system here

> in

> > Nevada stinks and we are all " victims " of it. All of us have lost

> > nearly everything we own....two of the families cannot get the

> > children's medications.....one of them is another law enforcement

> > family that has no choice for health insurance and are in trouble.

> > All that being said....all three of us are applying for the "

> > Beckett Waiver " . The people we are working with seem confused and

> > not very knowledgeable. My understanding is that the waiver is for

> > the children and the decision has no basis on my husbands income

> > level (as no income level could sustain the medical bills we

> have).

> > But, when I got the enormous pile of forms to fill out....it is

> all

> > financial stuff about my husbands income and our tax returns. How

> > is this so? Sure seems to me like they are looking at income. Can

> > anyone who has applied and gotten the waiver fill in the blanks on

> > the why? Should we be getting grilled about finances? Are there

> > any secrets we should know to having success? I was told by

> someone

> > (not through welfare...someone here) that we have to show that we

> > provide 3 nursing level care activites here at home for each

> child.

> > What would be considered? I know their SCIG would be....would the

> > nebulizer treatment be one? I have heard that Molly's sleepwalking

> > would be one....would their need for constant dietart modification

> > be one...trying to keep them pooping appropriately(sorry)? Does

> the

> > requirement for homeschooling factor in anywhere? Any feedback

> > would be oh so greatly appreciated.

> >

> > Medical Research: The reason I am asking is because I am writing

> an

> > article for IG Living about Medical Research, including the

> current

> > studies that are being recruited for. I have done interviews with

> > NIH and the Human Genome folks as well as others, but I would love

> > to talk to some individuals or families that have taken part in

> > Immune Deficiency Research studies. So if there is anyone who

> would

> > like to help out, please let me know.

> >

> >

> >

> >

> >

> >

> >

> >