By passing the Waiting list for Wavier Programs

[Guest guest]

Ok many have asked how to by pass the enormous waiting list sometimes 4 to 6

years for the waiting list for MDCP Becket and other waiver programs.

Ok Texas there is a program called the rider 28 program and what it say's a

child that has been administered into a nursing facilty for long term care and

that leaves the facilty to return home can have the waiver program they jump to

the top of the list.

OK now let me explain how to do this. We have done this now for about 43 people.

You get a facilty to agree to take your child as a long term care paitent. You

check your child in under longterm care after 24 hours you take your child out

tell them that you can't do this you just can't handle leaveing your child. Then

you turn around and call the wavier program and tell them your child was

administered in a facilty and is returning home and you want to file the rider

28. Your child will be on the program within weeks.

In other states it is called some thing else you will have to call your local

ageny and ask them what the criteria is. Also what the legislation is like rifer

28 or so forth. I hope this helps each of you.

Darin

[Guest guest]

Am I the only one who feels uncomfortable with this? Here's why -

here in Wisconsin, a child must meet a basic level of care in order

to participate in Beckett. I know how involved my son is and

I assume that (the majority of) the other children on the

Beckett waiting list are equally as involved. It is a first come,

first served program, with the exception, apparently, of children

who've been discharged from a long-term facility. (I thank my lucky

stars that we haven't needed to make use of long-term care so I do

not begrudge funds to families who have.) Essentially, if I took

the advice below, I would be working the system to put my needy

child ahead of other equally needy children who, not incidentally,

have been on the list longer than we have. I know it is my job to

advocate for my child as strongly as possible but what am I teaching

him if I work the system to our advantage while shorting another

child who has been waiting far longer than we have? Please

understand that I am not trying to be critical of those desperate

parents who work this loophole - perhaps our family simply isn't to

that point yet.

Lynn

> Ok many have asked how to by pass the enormous waiting list

sometimes 4 to 6 years for the waiting list for MDCP Becket

and other waiver programs.

>

> Ok Texas there is a program called the rider 28 program and what

it say's a child that has been administered into a nursing facilty

for long term care and that leaves the facilty to return home can

have the waiver program they jump to the top of the list.

>

> OK now let me explain how to do this. We have done this now for

about 43 people. You get a facilty to agree to take your child as a

long term care paitent. You check your child in under longterm care

after 24 hours you take your child out tell them that you can't do

this you just can't handle leaveing your child. Then you turn around

and call the wavier program and tell them your child was

administered in a facilty and is returning home and you want to file

the rider 28. Your child will be on the program within weeks.

>

> In other states it is called some thing else you will have to call

your local ageny and ask them what the criteria is. Also what the

legislation is like rifer 28 or so forth. I hope this helps each of

you.

>

> Darin

>

>

>

[Guest guest]

Lynn:

Amen to that. I am in Ohio and have finally been given a few hours a week to

have somebody help me with my son. As a single parent and another child, I

waited my turn to get to the top of the list. It's been a long four years

and the few hours sure don't make any difference. But better than

nothing.....

le

[ ] Re: By passing the Waiting list for Wavier

Programs

Am I the only one who feels uncomfortable with this? Here's why -

here in Wisconsin, a child must meet a basic level of care in order

to participate in Beckett. I know how involved my son is and

I assume that (the majority of) the other children on the

Beckett waiting list are equally as involved. It is a first come,

first served program, with the exception, apparently, of children

who've been discharged from a long-term facility. (I thank my lucky

stars that we haven't needed to make use of long-term care so I do

not begrudge funds to families who have.) Essentially, if I took

the advice below, I would be working the system to put my needy

child ahead of other equally needy children who, not incidentally,

have been on the list longer than we have. I know it is my job to

advocate for my child as strongly as possible but what am I teaching

him if I work the system to our advantage while shorting another

child who has been waiting far longer than we have? Please

understand that I am not trying to be critical of those desperate

parents who work this loophole - perhaps our family simply isn't to

that point yet.

Lynn

> Ok many have asked how to by pass the enormous waiting list

sometimes 4 to 6 years for the waiting list for MDCP Becket

and other waiver programs.

>

> Ok Texas there is a program called the rider 28 program and what

it say's a child that has been administered into a nursing facilty

for long term care and that leaves the facilty to return home can

have the waiver program they jump to the top of the list.

>

> OK now let me explain how to do this. We have done this now for

about 43 people. You get a facilty to agree to take your child as a

long term care paitent. You check your child in under longterm care

after 24 hours you take your child out tell them that you can't do

this you just can't handle leaveing your child. Then you turn around

and call the wavier program and tell them your child was

administered in a facilty and is returning home and you want to file

the rider 28. Your child will be on the program within weeks.

>

> In other states it is called some thing else you will have to call

your local ageny and ask them what the criteria is. Also what the

legislation is like rifer 28 or so forth. I hope this helps each of

you.

>

> Darin

>

>

>

[Guest guest]

Lynn At the ponit we were with Katlyn it was out only option. It was to do

that or go broke and have to move to a place that was no equiped to take

care of her. This was not intended to cause any other child harm. In all

reality I put my child before any other person in the world. I was on my

last leg phyically and could not manage without the care. We needed the

respet and she had money to use for that. However she was not allowed to use

the trust for Respet. We had no do what we had to do to make sure Kaltyn was

ok. I have parents that come to me now that have had no sleep in 3 days. Now

3 days they have no Medicaid and no one will help them. Are you gonna tell

me it is wrong. I can't see hwo you could even go there. This mother that IM

speaking of does everything for her child. Another point the goverment is

the one that made this possible. And remember the Dr.s oath first do no

harm. How can you take care of a child when you can't take care of yourself

from no sleep. I no you have aproblem with this. But understand why we are

all her is to change the medicad system. If it takes something like this to

fo this then so be it. God bless his sole. Had tried to get everyone

on this list to fight medicaid for HBOT this would cause them to rehink the

sytem if they had to spend alot of money fighting the parents How many has

done that to this date. Not very many. It is time for parents to fight. I no

you think it is taking away from another child. But you have to realize that

if every parent did this it would change the way they operate. Look I no

many think me a are irational people here. But look. We are fighting

to help everyone. I lost my child but im still heere fighting for yours. So

please don't judge me on this. I would take the shirt off my back for any of

your children. I have a mission here to protect every child and try to help

every child I can. Im not putting myself on a pedistool here but you have no

Idea how many children are getting Hyperbarics because me and Janie my wife

are making sure of it. We do fundraisers for familys and tell them about

loopoles like this. Many of you don't no but we don't work we have that

luxury but I would give it all back for my child to be here with me. So

what do we do. We spend all of our time working day and noite sometimes till

wee hours of the moring foghting to make things better for other parents.

Lynn I hope you don'thtink I was trying to deceive anyone. I hope I did not

offend you with my suggestion of this tactic. I owuld never try to

jepordize another child to save one. I feel so badly you were offended.

Darin

[ ] Re: By passing the Waiting list for Wavier

Programs

>

>

> Am I the only one who feels uncomfortable with this? Here's why -

> here in Wisconsin, a child must meet a basic level of care in order

> to participate in Beckett. I know how involved my son is and

> I assume that (the majority of) the other children on the

> Beckett waiting list are equally as involved. It is a first come,

> first served program, with the exception, apparently, of children

> who've been discharged from a long-term facility. (I thank my lucky

> stars that we haven't needed to make use of long-term care so I do

> not begrudge funds to families who have.) Essentially, if I took

> the advice below, I would be working the system to put my needy

> child ahead of other equally needy children who, not incidentally,

> have been on the list longer than we have. I know it is my job to

> advocate for my child as strongly as possible but what am I teaching

> him if I work the system to our advantage while shorting another

> child who has been waiting far longer than we have? Please

> understand that I am not trying to be critical of those desperate

> parents who work this loophole - perhaps our family simply isn't to

> that point yet.

>

> Lynn

>

>

> > Ok many have asked how to by pass the enormous waiting list

> sometimes 4 to 6 years for the waiting list for MDCP Becket

> and other waiver programs.

> >

> > Ok Texas there is a program called the rider 28 program and what

> it say's a child that has been administered into a nursing facilty

> for long term care and that leaves the facilty to return home can

> have the waiver program they jump to the top of the list.

> >

> > OK now let me explain how to do this. We have done this now for

> about 43 people. You get a facilty to agree to take your child as a

> long term care paitent. You check your child in under longterm care

> after 24 hours you take your child out tell them that you can't do

> this you just can't handle leaveing your child. Then you turn around

> and call the wavier program and tell them your child was

> administered in a facilty and is returning home and you want to file

> the rider 28. Your child will be on the program within weeks.

> >

> > In other states it is called some thing else you will have to call

> your local ageny and ask them what the criteria is. Also what the

> legislation is like rifer 28 or so forth. I hope this helps each of

> you.

> >

> > Darin

> >

> >

> >

[Guest guest]

Hi, Darin, don't worry, I wasn't offended. Nor was I accusing you

of intentionally depriving another child to get Kaitlyn what she

needed. I know how much you did for your precious daughter and how

much you continue to do for others for no other reason than that you

see a fellow human being in need and you want to help. And I

realize our family resides in a state where the wait for

Beckett is 6 months, not 6 years, so I have no understanding of such

waiting lists. Having said that, I am not sure that you are right

in saying that if everyone did this, the system would be forced to

change for the better. Instead, what I think would happen is that

the loophole would be closed and, perhaps even worse, the government

would use it as an excuse to further restrict funding. Perhaps I am

wrong - I certainly hope so.

The bottom line is that this tactic makes me uncomfortable but I do

acknowledge that, above all else, other parents need to do what is

best for their child. How sad that it has come to this in many

states...

Lynn

> > > Ok many have asked how to by pass the enormous waiting list

> > sometimes 4 to 6 years for the waiting list for MDCP Becket

> > and other waiver programs.

> > >

> > > Ok Texas there is a program called the rider 28 program and

what

> > it say's a child that has been administered into a nursing

facilty

> > for long term care and that leaves the facilty to return home can

> > have the waiver program they jump to the top of the list.

> > >

> > > OK now let me explain how to do this. We have done this now for

> > about 43 people. You get a facilty to agree to take your child

as a

> > long term care paitent. You check your child in under longterm

care

> > after 24 hours you take your child out tell them that you can't

do

> > this you just can't handle leaveing your child. Then you turn

around

> > and call the wavier program and tell them your child was

> > administered in a facilty and is returning home and you want to

file

> > the rider 28. Your child will be on the program within weeks.

> > >

> > > In other states it is called some thing else you will have to

call

> > your local ageny and ask them what the criteria is. Also what the

> > legislation is like rifer 28 or so forth. I hope this helps each

of

> > you.

> > >

> > > Darin

> > >

> > >

> > >

[Guest guest]

Thank you for the information. I am sorry for not calling you yet but

my middle child was put into the hospital.....this is my first day out

in the world....thank you for helping our families and you have alot of

strength to continue even after her passing. I don't know if I could

have the strength to even read the posts on the groups.....

hugs

lisa

[Guest guest]

Unfortunately, in Texas (as I am sure in most other states), you either have

to be dirt poor or filthy rich to care for a special needs child. Middle

class income families (where we fall) are hit the hardest. We do have private

insurance, which is fine for medicine, doctors, hospitalizations, dme, supplies,

etc. Where private insurance falls short sometimes is private duty nursing.

Our plan paid for 100 visits per calendar year, each visit counts as 4 hours.

As you can summize, it doesn't take long to burn through it.

I have twins, and my Chloe is severely disabled. Aiden is fine. Chloe has a

feeding tube & a tracheotomy. Sometimes she must be suctioned as often as

every 15 minutes. So, you could say that I fall into the category of the

desperate. I wasn't willing to take the risk of trying to watch Chloe all

through

the night with little or no sleep, and gamble on my being so tired that I

wouldn't hear her needing to be suctioned and her choking on her own secretions.

So, yes I have been accused of working the system. But everyday is a fight

for my girl to get what she needs. I wasn't willing to compromise Chloe's

safety (or her life) because my husband made too much money to get help from the

state. All I can say is God Bless Darin for all that he has taught me.

He has been my best teacher and we would not have the help we have today if

it wasn't for him.

Klutts

Mom to 20-month-old twins Aiden & Chloe (severe CP, microcephaly, HIE,

Dysphagia, CVI)

[Guest guest]

Thank so so much . I think your pretty awesome to. How is My little

Chloe doing today.

Love you all.

Darin

Re: [ ] Re: By passing the Waiting list for Wavier

Programs

>

> Unfortunately, in Texas (as I am sure in most other states), you either

have

> to be dirt poor or filthy rich to care for a special needs child. Middle

> class income families (where we fall) are hit the hardest. We do have

private

> insurance, which is fine for medicine, doctors, hospitalizations, dme,

supplies,

> etc. Where private insurance falls short sometimes is private duty

nursing.

> Our plan paid for 100 visits per calendar year, each visit counts as 4

hours.

> As you can summize, it doesn't take long to burn through it.

>

> I have twins, and my Chloe is severely disabled. Aiden is fine. Chloe

has a

> feeding tube & a tracheotomy. Sometimes she must be suctioned as often as

> every 15 minutes. So, you could say that I fall into the category of the

> desperate. I wasn't willing to take the risk of trying to watch Chloe all

through

> the night with little or no sleep, and gamble on my being so tired that I

> wouldn't hear her needing to be suctioned and her choking on her own

secretions.

>

> So, yes I have been accused of working the system. But everyday is a

fight

> for my girl to get what she needs. I wasn't willing to compromise Chloe's

> safety (or her life) because my husband made too much money to get help

from the

> state. All I can say is God Bless Darin for all that he has taught

me.

> He has been my best teacher and we would not have the help we have today

if

> it wasn't for him.

>

> Klutts

> Mom to 20-month-old twins Aiden & Chloe (severe CP, microcephaly, HIE,

> Dysphagia, CVI)

>

>

>

[Guest guest]

Dear : I am glad Darin was able to help you find some

relief. Good luck to you.

Lynn

> Unfortunately, in Texas (as I am sure in most other states), you

either have

> to be dirt poor or filthy rich to care for a special needs child.

Middle

> class income families (where we fall) are hit the hardest. We do

have private

> insurance, which is fine for medicine, doctors, hospitalizations,

dme, supplies,

> etc. Where private insurance falls short sometimes is private

duty nursing.

> Our plan paid for 100 visits per calendar year, each visit counts

as 4 hours.

> As you can summize, it doesn't take long to burn through it.

>

> I have twins, and my Chloe is severely disabled. Aiden is fine.

Chloe has a

> feeding tube & a tracheotomy. Sometimes she must be suctioned as

often as

> every 15 minutes. So, you could say that I fall into the category

of the

> desperate. I wasn't willing to take the risk of trying to watch

Chloe all through

> the night with little or no sleep, and gamble on my being so tired

that I

> wouldn't hear her needing to be suctioned and her choking on her

own secretions.

>

> So, yes I have been accused of working the system. But everyday

is a fight

> for my girl to get what she needs. I wasn't willing to compromise

Chloe's

> safety (or her life) because my husband made too much money to get

help from the

> state. All I can say is God Bless Darin for all that he

has taught me.

> He has been my best teacher and we would not have the help we have

today if

> it wasn't for him.

>

> Klutts

> Mom to 20-month-old twins Aiden & Chloe (severe CP, microcephaly,

HIE,

> Dysphagia, CVI)

>

>

>