Re: defintion of developmental disability

[Guest guest]

In Indiana, my son receives services under a Medicaid Developmental

Disability (DD) Waiver, so I would assume since CHARGE is his primary diagnosis,

that

it is considered a developmental disability.

Crickmore mom to ph age 23 cHaRGE'r

[Guest guest]

In Indiana, my son receives services under a Medicaid Developmental

Disability (DD) Waiver, so I would assume since CHARGE is his primary diagnosis,

that

it is considered a developmental disability.

Crickmore mom to ph age 23 cHaRGE'r

[Guest guest]

Thank you. We are also putting through the first Medicaid waiver for

children in IL so I want to be certain that our kids will be served under

that -- which will use the new state definition of DD.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: defintion of developmental disability

In Indiana, my son receives services under a Medicaid Developmental

Disability (DD) Waiver, so I would assume since CHARGE is his primary

diagnosis, that

it is considered a developmental disability.

Crickmore mom to ph age 23 cHaRGE'r

[Guest guest]

Thank you. We are also putting through the first Medicaid waiver for

children in IL so I want to be certain that our kids will be served under

that -- which will use the new state definition of DD.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: defintion of developmental disability

In Indiana, my son receives services under a Medicaid Developmental

Disability (DD) Waiver, so I would assume since CHARGE is his primary

diagnosis, that

it is considered a developmental disability.

Crickmore mom to ph age 23 cHaRGE'r

[Guest guest]

Michele,

I dont have much time to read this today but later this evning or

probably tomorrow i will read it further. I want to find such a bill in

canada. Especialy Ontario.

My quick responce is if this is the new proposed list, it leaves the

reader a lot of space for interpretation. I dont think i like the

term " suveir " . That word by itself would make me excluded from anyone

who dosnt have a full understanding or knowlage of my dissability. If

you just left out suvier I would 100 percent fall into

the " dissability " catagory. However this bill leaves a lot of room for

the reader to interpret. Main question is... who defines how " suvier " a

person is? is each question based on yes/no or is there a grey area?

Anyways i will discuss more later.

Chantelle

[Guest guest]

Chantelle-

Good point. I think this is what bothers me too. I think they put in

severe to limit the eligible people and, therefore, the millions required to

fund the legislation. If it was available to all people with disabilities

regardless of severity, it'd cost a fortune. I wonder if there is a way to

get an understanding that severity can come from each area being severe or

from the combined effect of less-severe interference in more than one area.

Does that make sense? I look forward to hearing your thoughts. I'm gonna

be away for the weekend, but I'll be back Mon or Tues. I have time to get

my thoughts formalized and still have an opportunity to make a difference.

Once I get things clear here, maybe what I find out will be of help to you

in Ontario.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: defintion of developmental disability

Michele,

I dont have much time to read this today but later this evning or

probably tomorrow i will read it further. I want to find such a bill in

canada. Especialy Ontario.

My quick responce is if this is the new proposed list, it leaves the

reader a lot of space for interpretation. I dont think i like the

term " suveir " . That word by itself would make me excluded from anyone

who dosnt have a full understanding or knowlage of my dissability. If

you just left out suvier I would 100 percent fall into

the " dissability " catagory. However this bill leaves a lot of room for

the reader to interpret. Main question is... who defines how " suvier " a

person is? is each question based on yes/no or is there a grey area?

Anyways i will discuss more later.

Chantelle

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or

email info@... .

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Chantelle-

Good point. I think this is what bothers me too. I think they put in

severe to limit the eligible people and, therefore, the millions required to

fund the legislation. If it was available to all people with disabilities

regardless of severity, it'd cost a fortune. I wonder if there is a way to

get an understanding that severity can come from each area being severe or

from the combined effect of less-severe interference in more than one area.

Does that make sense? I look forward to hearing your thoughts. I'm gonna

be away for the weekend, but I'll be back Mon or Tues. I have time to get

my thoughts formalized and still have an opportunity to make a difference.

Once I get things clear here, maybe what I find out will be of help to you

in Ontario.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: defintion of developmental disability

Michele,

I dont have much time to read this today but later this evning or

probably tomorrow i will read it further. I want to find such a bill in

canada. Especialy Ontario.

My quick responce is if this is the new proposed list, it leaves the

reader a lot of space for interpretation. I dont think i like the

term " suveir " . That word by itself would make me excluded from anyone

who dosnt have a full understanding or knowlage of my dissability. If

you just left out suvier I would 100 percent fall into

the " dissability " catagory. However this bill leaves a lot of room for

the reader to interpret. Main question is... who defines how " suvier " a

person is? is each question based on yes/no or is there a grey area?

Anyways i will discuss more later.

Chantelle

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or

email info@... .

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

If you have any ability to do so, you need to make sure there is wording in

the medicaid waiver that specifies deafblind (not legally blind + legally

deaf), but the combination of vision and hearing loss, such that the vision

cannot compensate for the hearing and the hearing cannot compensate for the

vision. That is the number one way our kids fall through the cracks. They

have vision in one eye that prevents the legally blind label (although in

reality that is because people are not identifying the true limits of the

vision) and they have enough hearing in at least one ear to not be

considered deaf. Then if they are not Mentally Retarded then it is presumed

there is no developmental disability, when clearly the combination of all

their impairments is a result of a condition present from birth, that does

impact developmental outcomes, that does impact life in all those areas, and

does need the ongoing services. There needs to be wording that allows for a

determination of the impact of all of a child's conditions rather than

relying on fitting only certain categories.

Kim

> Thank you. We are also putting through the first Medicaid waiver for

> children in IL so I want to be certain that our kids will be served under

> that -- which will use the new state definition of DD.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

> Re: defintion of developmental disability

>

> In Indiana, my son receives services under a Medicaid Developmental

> Disability (DD) Waiver, so I would assume since CHARGE is his primary

> diagnosis, that

> it is considered a developmental disability.

> Crickmore mom to ph age 23 cHaRGE'r

>

>

>

[Guest guest]

If you have any ability to do so, you need to make sure there is wording in

the medicaid waiver that specifies deafblind (not legally blind + legally

deaf), but the combination of vision and hearing loss, such that the vision

cannot compensate for the hearing and the hearing cannot compensate for the

vision. That is the number one way our kids fall through the cracks. They

have vision in one eye that prevents the legally blind label (although in

reality that is because people are not identifying the true limits of the

vision) and they have enough hearing in at least one ear to not be

considered deaf. Then if they are not Mentally Retarded then it is presumed

there is no developmental disability, when clearly the combination of all

their impairments is a result of a condition present from birth, that does

impact developmental outcomes, that does impact life in all those areas, and

does need the ongoing services. There needs to be wording that allows for a

determination of the impact of all of a child's conditions rather than

relying on fitting only certain categories.

Kim

> Thank you. We are also putting through the first Medicaid waiver for

> children in IL so I want to be certain that our kids will be served under

> that -- which will use the new state definition of DD.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

> Re: defintion of developmental disability

>

> In Indiana, my son receives services under a Medicaid Developmental

> Disability (DD) Waiver, so I would assume since CHARGE is his primary

> diagnosis, that

> it is considered a developmental disability.

> Crickmore mom to ph age 23 cHaRGE'r

>

>

>

[Guest guest]

Individuals must realize that the impact (for any person - not just CHARGE)

is greater than the sum of its parts, let alone focusing on only one part at

a time to determine impact.

Individual label - Qualify based on severity of impairment

Vision - no

Hearing - no

Able to perform ADL - no

Ability to learn - no

Ability to communicate - no

Ability to interact with peers - no

Ability to work - no

Ability to walk - no

Meets formal psychiatric dx - no

(Be sure you realize that the no's mean they are not qualifying for services

in that area)

But then when you consider that each of those areas is impacted in some way

and the child or adult is having to compensate for each weakened area to do

what others take for granted, it is without a doubt a developmental

disability.

I mean no discredit to any adult person with CHARGE out there who is able to

live independently, to work, to earn enough to support themselves, to make

decisions, to plan, to cook, to clean, to organize, to handle arrangements

for needed services, to get around via public transportation, to make

friends, to go to college, whatever. But all in all, it seems that for the

majority of you, no matter how wonderful you are at compensating for all of

the impacts on your life that CHARGE has made, it is HARD, and you need more

supports than you are getting to be able to live a life that the rest of us

take for granted. That truly must change.

Kim

> If you have any ability to do so, you need to make sure there is wording in

> the medicaid waiver that specifies deafblind (not legally blind + legally

> deaf), but the combination of vision and hearing loss, such that the vision

> cannot compensate for the hearing and the hearing cannot compensate for the

> vision. That is the number one way our kids fall through the cracks. They

> have vision in one eye that prevents the legally blind label (although in

> reality that is because people are not identifying the true limits of the

> vision) and they have enough hearing in at least one ear to not be

> considered deaf. Then if they are not Mentally Retarded then it is presumed

> there is no developmental disability, when clearly the combination of all

> their impairments is a result of a condition present from birth, that does

> impact developmental outcomes, that does impact life in all those areas, and

> does need the ongoing services. There needs to be wording that allows for a

> determination of the impact of all of a child's conditions rather than

> relying on fitting only certain categories.

>

> Kim

>

>

>

>

>> Thank you. We are also putting through the first Medicaid waiver for

>> children in IL so I want to be certain that our kids will be served under

>> that -- which will use the new state definition of DD.

>>

>> Michele W

>> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>>

>>

>> Re: defintion of developmental disability

>>

>> In Indiana, my son receives services under a Medicaid Developmental

>> Disability (DD) Waiver, so I would assume since CHARGE is his primary

>> diagnosis, that

>> it is considered a developmental disability.

>> Crickmore mom to ph age 23 cHaRGE'r

>>

>>

>>

[Guest guest]

Individuals must realize that the impact (for any person - not just CHARGE)

is greater than the sum of its parts, let alone focusing on only one part at

a time to determine impact.

Individual label - Qualify based on severity of impairment

Vision - no

Hearing - no

Able to perform ADL - no

Ability to learn - no

Ability to communicate - no

Ability to interact with peers - no

Ability to work - no

Ability to walk - no

Meets formal psychiatric dx - no

(Be sure you realize that the no's mean they are not qualifying for services

in that area)

But then when you consider that each of those areas is impacted in some way

and the child or adult is having to compensate for each weakened area to do

what others take for granted, it is without a doubt a developmental

disability.

I mean no discredit to any adult person with CHARGE out there who is able to

live independently, to work, to earn enough to support themselves, to make

decisions, to plan, to cook, to clean, to organize, to handle arrangements

for needed services, to get around via public transportation, to make

friends, to go to college, whatever. But all in all, it seems that for the

majority of you, no matter how wonderful you are at compensating for all of

the impacts on your life that CHARGE has made, it is HARD, and you need more

supports than you are getting to be able to live a life that the rest of us

take for granted. That truly must change.

Kim

> If you have any ability to do so, you need to make sure there is wording in

> the medicaid waiver that specifies deafblind (not legally blind + legally

> deaf), but the combination of vision and hearing loss, such that the vision

> cannot compensate for the hearing and the hearing cannot compensate for the

> vision. That is the number one way our kids fall through the cracks. They

> have vision in one eye that prevents the legally blind label (although in

> reality that is because people are not identifying the true limits of the

> vision) and they have enough hearing in at least one ear to not be

> considered deaf. Then if they are not Mentally Retarded then it is presumed

> there is no developmental disability, when clearly the combination of all

> their impairments is a result of a condition present from birth, that does

> impact developmental outcomes, that does impact life in all those areas, and

> does need the ongoing services. There needs to be wording that allows for a

> determination of the impact of all of a child's conditions rather than

> relying on fitting only certain categories.

>

> Kim

>

>

>

>

>> Thank you. We are also putting through the first Medicaid waiver for

>> children in IL so I want to be certain that our kids will be served under

>> that -- which will use the new state definition of DD.

>>

>> Michele W

>> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>>

>>

>> Re: defintion of developmental disability

>>

>> In Indiana, my son receives services under a Medicaid Developmental

>> Disability (DD) Waiver, so I would assume since CHARGE is his primary

>> diagnosis, that

>> it is considered a developmental disability.

>> Crickmore mom to ph age 23 cHaRGE'r

>>

>>

>>

[Guest guest]

Excellent! Thanks. I am going to compile all of our thoughts and share

them with the President of the IL ARC. He is a key player in this

legislation and is interested in our issues.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: defintion of developmental disability

>

> In Indiana, my son receives services under a Medicaid Developmental

> Disability (DD) Waiver, so I would assume since CHARGE is his primary

> diagnosis, that

> it is considered a developmental disability.

> Crickmore mom to ph age 23 cHaRGE'r

>

>

>

[Guest guest]

Excellent! Thanks. I am going to compile all of our thoughts and share

them with the President of the IL ARC. He is a key player in this

legislation and is interested in our issues.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: defintion of developmental disability

>

> In Indiana, my son receives services under a Medicaid Developmental

> Disability (DD) Waiver, so I would assume since CHARGE is his primary

> diagnosis, that

> it is considered a developmental disability.

> Crickmore mom to ph age 23 cHaRGE'r

>

>

>

[Guest guest]

,

Do you know if it is due to his level of functioning with the primary label

of CHARGE, if it is connected with his hearing loss or vision loss or what?

Dylan qualifies for Medicaid waiver now, but the better he does, the more he

is in danger of losing it, which truly makes no sense. If we took away the

services, because he could now speak a few words, or walk, or whatever, then

he would undoubtedly lose skill levels and appear more impaired.

Kim

> In Indiana, my son receives services under a Medicaid Developmental

> Disability (DD) Waiver, so I would assume since CHARGE is his primary

> diagnosis, that

> it is considered a developmental disability.

> Crickmore mom to ph age 23 cHaRGE'r

>

>

>

[Guest guest]

,

Do you know if it is due to his level of functioning with the primary label

of CHARGE, if it is connected with his hearing loss or vision loss or what?

Dylan qualifies for Medicaid waiver now, but the better he does, the more he

is in danger of losing it, which truly makes no sense. If we took away the

services, because he could now speak a few words, or walk, or whatever, then

he would undoubtedly lose skill levels and appear more impaired.

Kim

> In Indiana, my son receives services under a Medicaid Developmental

> Disability (DD) Waiver, so I would assume since CHARGE is his primary

> diagnosis, that

> it is considered a developmental disability.

> Crickmore mom to ph age 23 cHaRGE'r

>

>

>

[Guest guest]

Kim-

Aubrie qualifies right now under IL's definition because she hasn't had to

have an IQ test for the state for several years. When they've done it in

the past, she's done questionably enough and has been young enough that the

examiner could state that there was no way to rule out DD based on all of

her combined impairments and difficulties. It's not that he said she was DD

for certain, but that he couldn't say she wasn't. I worry that if they did

testing now, or if they saw the testing Pam did, they may not allow her any

longer. As it is, the program she is getting a stipend under is based on

family income so we may hit the income barrier before she is unequivocally

" too smart " . Again the related issue -- I might not make us go high enough

over the limit to make up for the loss in financial support so what's a

person to do?

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Kim-

Aubrie qualifies right now under IL's definition because she hasn't had to

have an IQ test for the state for several years. When they've done it in

the past, she's done questionably enough and has been young enough that the

examiner could state that there was no way to rule out DD based on all of

her combined impairments and difficulties. It's not that he said she was DD

for certain, but that he couldn't say she wasn't. I worry that if they did

testing now, or if they saw the testing Pam did, they may not allow her any

longer. As it is, the program she is getting a stipend under is based on

family income so we may hit the income barrier before she is unequivocally

" too smart " . Again the related issue -- I might not make us go high enough

over the limit to make up for the loss in financial support so what's a

person to do?

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

That is the truth - If the year I was heavily advocating at our state level,

the changes had been passed into law, that made ours income based, we would

have had to make significant family decisions - Would I quit to decrease the

income, which would mean we would then move to a less expensive area; would

Roy have had to close his own business, and go work for a place such as Home

Depot so he could have benefits (that still would not replace what we get

through the waiver) - I know some families who even " legally divorce " so the

income is counted separately - not what we would choose to do, but making it

through CHARGEland without any health insurance, or any help with the

" extras " like the $350 in formula he still uses at age 9, the $1500/month in

medical supplies associated with the tube feedings that are not covered by

private insurance either, the summer program he attends, the therapists and

so on. I don't care the income level - most families don't have that amount

of cushion money.

Fortunately the advocating helped and the law was not passed.

Kim

> Kim-

> Aubrie qualifies right now under IL's definition because she hasn't had to

> have an IQ test for the state for several years. When they've done it in

> the past, she's done questionably enough and has been young enough that the

> examiner could state that there was no way to rule out DD based on all of

> her combined impairments and difficulties. It's not that he said she was DD

> for certain, but that he couldn't say she wasn't. I worry that if they did

> testing now, or if they saw the testing Pam did, they may not allow her any

> longer. As it is, the program she is getting a stipend under is based on

> family income so we may hit the income barrier before she is unequivocally

> " too smart " . Again the related issue -- I might not make us go high enough

> over the limit to make up for the loss in financial support so what's a

> person to do?

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Dylan qualifies, because I allowed them to say he " functions in the moderate

mentally retarded " range, which is true. We all agree that we do not

believe this functioning is due to a lack of cognitive ability, but is a

direct impact of all of those other things I had listed earlier. Clearly if

we stopped serving him, his function would decline rather than improve.

Undoubtedly better to get the definition changed to allow for the combined

impact.

Kim

> Kim-

> Aubrie qualifies right now under IL's definition because she hasn't had to

> have an IQ test for the state for several years. When they've done it in

> the past, she's done questionably enough and has been young enough that the

> examiner could state that there was no way to rule out DD based on all of

> her combined impairments and difficulties. It's not that he said she was DD

> for certain, but that he couldn't say she wasn't. I worry that if they did

> testing now, or if they saw the testing Pam did, they may not allow her any

> longer. As it is, the program she is getting a stipend under is based on

> family income so we may hit the income barrier before she is unequivocally

> " too smart " . Again the related issue -- I might not make us go high enough

> over the limit to make up for the loss in financial support so what's a

> person to do?

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Kim,

I live in Indiana and yes, it has to do with vision and hearing impairment.

During my interview, they asked me how severe was 's hearing and vision

loss. They also sent me paperwork that said she had a 50% chance of mental

retardation and labeled this part " at risk " . They have not done any type of

formal I.Q. testing yet.

n--mom to 3yrs (CHARGE) and her 3 siblings and wife to Lester

Kim Lauger wrote:

,

Do you know if it is due to his level of functioning with the primary label

of CHARGE, if it is connected with his hearing loss or vision loss or what?

Dylan qualifies for Medicaid waiver now, but the better he does, the more he

is in danger of losing it, which truly makes no sense. If we took away the

services, because he could now speak a few words, or walk, or whatever, then

he would undoubtedly lose skill levels and appear more impaired.

Kim

> In Indiana, my son receives services under a Medicaid Developmental

> Disability (DD) Waiver, so I would assume since CHARGE is his primary

> diagnosis, that

> it is considered a developmental disability.

> Crickmore mom to ph age 23 cHaRGE'r

>

>

>

[Guest guest]

Exaclty. I'd rather the wording be such that our kids obviously qualify

without having to play word games to get it to happen.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: defintion of developmental disability

Dylan qualifies, because I allowed them to say he " functions in the moderate

mentally retarded " range, which is true. We all agree that we do not

believe this functioning is due to a lack of cognitive ability, but is a

direct impact of all of those other things I had listed earlier. Clearly if

we stopped serving him, his function would decline rather than improve.

Undoubtedly better to get the definition changed to allow for the combined

impact.

Kim

> Kim-

> Aubrie qualifies right now under IL's definition because she hasn't had to

> have an IQ test for the state for several years. When they've done it in

> the past, she's done questionably enough and has been young enough that

the

> examiner could state that there was no way to rule out DD based on all of

> her combined impairments and difficulties. It's not that he said she was

DD

> for certain, but that he couldn't say she wasn't. I worry that if they

did

> testing now, or if they saw the testing Pam did, they may not allow her

any

> longer. As it is, the program she is getting a stipend under is based on

> family income so we may hit the income barrier before she is unequivocally

> " too smart " . Again the related issue -- I might not make us go high

enough

> over the limit to make up for the loss in financial support so what's a

> person to do?

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

> Membership of this email support groups does not constitute membership in

the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

n-

That sounds very much like Aubrie at age 3. At that time, it was to our

benefit that the old research gives MR as a likely outcome with CHARGE. If

it works for me, let them read that old stuff. But would I let the school

read it?? No way!

And Aubrie qualifies for deafblind services not because she meets the state

def of db, but because of the combined losses related to CHARGE and because

CHARGE has such a huge incidence of db. So even if the state DD definition

included db, Aubrie still wouldn't fit because her good eye and her good ear

are too good.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

,

I agree that right now the old definition of CHARGE that the state is using is

to our benefit, but how long will this last? I do think needs to change, for all

our CHARGE kides from birth to adulthood.

At 's last genetics appointment, her Dr. was basically disgusted at

the LACK of SERVICES there is for the deaf/blind. It just isn't there. The

deaf/blind link, is a start, but that is just it, we need more than resources,

we need SERVICES, we need more than lip service, we need a support system that

will help our children now and in their future. We need deaf/blind specialists,

deaf/blind therapists working at the state and LOCAL levels and it just isn't

happening. If we don't change the DD Definition, more kids will just continue to

fall through the cracks. If we don't raise the issue to the government the

importance of what it means to be visually and hearing impaired, then we will

continue to fight and struggle for our kids to qualify for just basic serives

that are basically non-existent anyway.

Things need to change! We need for our voices to be heard!

n-mom to 3yrs.(CHARGE) and her 3 siblings and wife to Lester

Michele Westmaas wrote:

n-

That sounds very much like Aubrie at age 3. At that time, it was to our

benefit that the old research gives MR as a likely outome with CHARGE. If

it works for me, let them read that old stuff. But would I let the school

read it?? No way!

And Aubrie qualifies for deafblind services not because she meets the state

def of db, but because of the combined losses related to CHARGE and because

CHARGE has such a huge incidence of db. So even if the state DD definition

included db, Aubrie still wouldn't fit because her good eye and her good ear

are too good.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or email

info@... .

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

The privilege of that happens when they enter school, about age 5 or 6.

That is when it starts to get trickier. Kim

> Kim,

>

> I live in Indiana and yes, it has to do with vision and hearing impairment.

> During my interview, they asked me how severe was 's hearing and

> vision loss. They also sent me paperwork that said she had a 50% chance of

> mental retardation and labeled this part " at risk " . They have not done any

> type of formal I.Q. testing yet.

>

> n--mom to 3yrs (CHARGE) and her 3 siblings and wife to Lester

>

>

>

>

> Kim Lauger wrote:

> ,

>

> Do you know if it is due to his level of functioning with the primary label

> of CHARGE, if it is connected with his hearing loss or vision loss or what?

> Dylan qualifies for Medicaid waiver now, but the better he does, the more he

> is in danger of losing it, which truly makes no sense. If we took away the

> services, because he could now speak a few words, or walk, or whatever, then

> he would undoubtedly lose skill levels and appear more impaired.

>

> Kim

>

>

>

>

>> In Indiana, my son receives services under a Medicaid Developmental

>> Disability (DD) Waiver, so I would assume since CHARGE is his primary

>> diagnosis, that

>> it is considered a developmental disability.

>> Crickmore mom to ph age 23 cHaRGE'r

>>

>>

>>

[Guest guest]

That is why we have to be careful of state definitions of deafblind, too

many are still too restrictive. Kim

> n-

> That sounds very much like Aubrie at age 3. At that time, it was to our

> benefit that the old research gives MR as a likely outcome with CHARGE. If

> it works for me, let them read that old stuff. But would I let the school

> read it?? No way!

>

> And Aubrie qualifies for deafblind services not because she meets the state

> def of db, but because of the combined losses related to CHARGE and because

> CHARGE has such a huge incidence of db. So even if the state DD definition

> included db, Aubrie still wouldn't fit because her good eye and her good ear

> are too good.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>