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If you have a doctor who knows enough to be disgusted at the lack of

services for deafblind, then that is an asset you need to cultivate! Make

sure he is informed of events sponsored by state's deafblind project,

interviewed through media at appropriate times and so on.

Kim

> ,

>

> 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-.

>

>

>

>

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YES kim if any docotr says that ur right keep them i say

>

> 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-.

> >

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Well i somewhat dissagree. Depends on the sevarity of charge. for a

mild charger the letters really dont help too much. According to the

old definition i really only CHAE. Several of my " charge " features

common to charge arnt even covered in the 6 letters. The old definition

would be bad if say you didnt have facial palsy and obvious

deformities. If you didnt have the " ears " you would be totaly missed.

The old definition misses a LOT of potential charge cases. The old

definition relys heavily on having a deformed floppy ear and

colombomas. However Meg said in the Toronto conference (maby even the

miami one too) that someone could have charge even without the charge

ear or colombomas.

By using the old system, if your child dosnt fit the old definitions

then they could be excluded from being considered charge and thus not

be considered elegable for a charge related dissability service if the

case worker felt that the child wasnt charge cause the case worker was

using the old system, that might be bad.

Chantelle

>

> 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

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Well i somewhat dissagree. Depends on the sevarity of charge. for a

mild charger the letters really dont help too much. According to the

old definition i really only CHAE. Several of my " charge " features

common to charge arnt even covered in the 6 letters. The old definition

would be bad if say you didnt have facial palsy and obvious

deformities. If you didnt have the " ears " you would be totaly missed.

The old definition misses a LOT of potential charge cases. The old

definition relys heavily on having a deformed floppy ear and

colombomas. However Meg said in the Toronto conference (maby even the

miami one too) that someone could have charge even without the charge

ear or colombomas.

By using the old system, if your child dosnt fit the old definitions

then they could be excluded from being considered charge and thus not

be considered elegable for a charge related dissability service if the

case worker felt that the child wasnt charge cause the case worker was

using the old system, that might be bad.

Chantelle

>

> 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

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Share on other sites

Well i somewhat dissagree. Depends on the sevarity of charge. for a

mild charger the letters really dont help too much. According to the

old definition i really only CHAE. Several of my " charge " features

common to charge arnt even covered in the 6 letters. The old definition

would be bad if say you didnt have facial palsy and obvious

deformities. If you didnt have the " ears " you would be totaly missed.

The old definition misses a LOT of potential charge cases. The old

definition relys heavily on having a deformed floppy ear and

colombomas. However Meg said in the Toronto conference (maby even the

miami one too) that someone could have charge even without the charge

ear or colombomas.

By using the old system, if your child dosnt fit the old definitions

then they could be excluded from being considered charge and thus not

be considered elegable for a charge related dissability service if the

case worker felt that the child wasnt charge cause the case worker was

using the old system, that might be bad.

Chantelle

>

> 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

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maybe see

> that this new definition does not exclude people with CHARGE. Is

CHARGE

> considered a developmental disability in other states? Does

anyone know?

> What is the obstacle to people getting services?

My biggest obstical is getting people to see how the combined

imparments affect my life. Also the ODSP form (dissability

application) does not have anywhere for people with multiple

dissabilities. Also it relys too much on physical abilities. Can you

move can you walk. stuff like that. Basicaly as it stands now,

someone who gets injured in a car accident and winds up in a

wheelchair gets through the dissability program much quicker then

someone with combined vision/hearing. *a family member got in a car

accident (she was driving drunk) and messed up her back but has no

other issues is on odsp.... i have a back issue, combined sensery

imparment, behavioural stuff, learning issues yet im having a H#$%

of a time getting on odsp... anyways....

>

>

>

> This is the federal definition of DD:

>

> DEVELOPMENTAL DISABILITY.-

>

> (A) IN GENERAL. -The term ''developmental disability'' means a

severe,

> chronic disability of an individual that-

>

As i said before, severe is too strong. it exludes many people. How

do you define severe anyways?

> (i) is attributable to a mental or physical impairment or

combination of

> mental and physical impairments;

>

They need to include sensory. If they JUST look at mental and

physical in day to day living i probably would not qualify. However

when i was in Miami i was in a " good " state. I should also mention i

had nearly od'd on cafeen pills a few days before i went to miami

cause i was panicing about the conference and flying and speaking in

public.

>

> 114 STAT. 1684 PUBLIC LAW 106-402-OCT. 30, 2000

>

>

> (ii) is manifested before the individual attains age 22;

This might be a problem if some of the health issues related to

charge dont manifest till later in life (ie bone density, thyroid)

Behaviour issues might strike later in life as well. Vision and

hearing could deteriorate after this age too. For me i am actualy

fortunate there is a missing amount of health info on my vision so

the amount of visual feild in my good eye is not available. Therefor

no way to traice if i was infact legaly blind in elementary/high

school. I know though my vision was a bit better 15 years ago.

>

> (iii) is likely to continue indefinitely;

>

Without medical intervention then i would say the behaviour and endo

stuff would continue to worsen for me. Same with back issues.

> (iv) results in substantial functional limitations in 3 or more of

the

> following areas of major life activity:

> (I) Self-care.

> (II) Receptive and expressive language.

> (III) Learning.

> (IV) Mobility.

> (V) Self-direction.

> (VI) Capacity for independent living.

> (VII) Economic self-sufficiency; and

>

> (v) reflects the individual's need for a combination and sequence

of

> special, interdisciplinary, or generic services, individualized

supports, or

> other forms of assistance that are of lifelong or extended

duration and are

> individually planned and coordinated.

>

I think the last point needs to mention multi sensery impairment

specificaly. Otherwise the last point would be very debatable

depending on the doctor you had available to fill out the

dissability report.

>

> Patty, Chantelle, , Chip, . I hope I'm not

forgetting

> anybody. do you guys fit in here? If not, why not? Ellen, I

think you do

> simply because of your physical needs. Am I right?

>

> Why are you guys falling through the cracks? If the definition is

the

> problem, how would it need to be altered to include you?

>

For myself i would probably just miss the dissability service

coverage because of the multi sensery stuff and no place to really

mention behaviour issues. I think another reason im falling between

the cracks is because i havnt had consistant doctors/medical care

over the years. Ive moved around. I think the last couple paragraphs

of my charge speech i did would help explain what needs to be

improved. I will pull out the speach i did and post the last couple

paragraphs that are related to this topic.

I hope this is helping you. :)

On a plus note i actualy had a GOOD talk with the odsp intake person

this evning. (in between my sobbing cause im going between manic and

depression atm) she said she is going to call my doctor directly! Id

be totaly exstatic if it wasnt for the fact that i hagve a HUGE

migrane cause we just went from a very low, low pressure weather

system to a high pressure weather system.

Cheers and sorry its so looooong!!! lol

Chantelle

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Share on other sites

maybe see

> that this new definition does not exclude people with CHARGE. Is

CHARGE

> considered a developmental disability in other states? Does

anyone know?

> What is the obstacle to people getting services?

My biggest obstical is getting people to see how the combined

imparments affect my life. Also the ODSP form (dissability

application) does not have anywhere for people with multiple

dissabilities. Also it relys too much on physical abilities. Can you

move can you walk. stuff like that. Basicaly as it stands now,

someone who gets injured in a car accident and winds up in a

wheelchair gets through the dissability program much quicker then

someone with combined vision/hearing. *a family member got in a car

accident (she was driving drunk) and messed up her back but has no

other issues is on odsp.... i have a back issue, combined sensery

imparment, behavioural stuff, learning issues yet im having a H#$%

of a time getting on odsp... anyways....

>

>

>

> This is the federal definition of DD:

>

> DEVELOPMENTAL DISABILITY.-

>

> (A) IN GENERAL. -The term ''developmental disability'' means a

severe,

> chronic disability of an individual that-

>

As i said before, severe is too strong. it exludes many people. How

do you define severe anyways?

> (i) is attributable to a mental or physical impairment or

combination of

> mental and physical impairments;

>

They need to include sensory. If they JUST look at mental and

physical in day to day living i probably would not qualify. However

when i was in Miami i was in a " good " state. I should also mention i

had nearly od'd on cafeen pills a few days before i went to miami

cause i was panicing about the conference and flying and speaking in

public.

>

> 114 STAT. 1684 PUBLIC LAW 106-402-OCT. 30, 2000

>

>

> (ii) is manifested before the individual attains age 22;

This might be a problem if some of the health issues related to

charge dont manifest till later in life (ie bone density, thyroid)

Behaviour issues might strike later in life as well. Vision and

hearing could deteriorate after this age too. For me i am actualy

fortunate there is a missing amount of health info on my vision so

the amount of visual feild in my good eye is not available. Therefor

no way to traice if i was infact legaly blind in elementary/high

school. I know though my vision was a bit better 15 years ago.

>

> (iii) is likely to continue indefinitely;

>

Without medical intervention then i would say the behaviour and endo

stuff would continue to worsen for me. Same with back issues.

> (iv) results in substantial functional limitations in 3 or more of

the

> following areas of major life activity:

> (I) Self-care.

> (II) Receptive and expressive language.

> (III) Learning.

> (IV) Mobility.

> (V) Self-direction.

> (VI) Capacity for independent living.

> (VII) Economic self-sufficiency; and

>

> (v) reflects the individual's need for a combination and sequence

of

> special, interdisciplinary, or generic services, individualized

supports, or

> other forms of assistance that are of lifelong or extended

duration and are

> individually planned and coordinated.

>

I think the last point needs to mention multi sensery impairment

specificaly. Otherwise the last point would be very debatable

depending on the doctor you had available to fill out the

dissability report.

>

> Patty, Chantelle, , Chip, . I hope I'm not

forgetting

> anybody. do you guys fit in here? If not, why not? Ellen, I

think you do

> simply because of your physical needs. Am I right?

>

> Why are you guys falling through the cracks? If the definition is

the

> problem, how would it need to be altered to include you?

>

For myself i would probably just miss the dissability service

coverage because of the multi sensery stuff and no place to really

mention behaviour issues. I think another reason im falling between

the cracks is because i havnt had consistant doctors/medical care

over the years. Ive moved around. I think the last couple paragraphs

of my charge speech i did would help explain what needs to be

improved. I will pull out the speach i did and post the last couple

paragraphs that are related to this topic.

I hope this is helping you. :)

On a plus note i actualy had a GOOD talk with the odsp intake person

this evning. (in between my sobbing cause im going between manic and

depression atm) she said she is going to call my doctor directly! Id

be totaly exstatic if it wasnt for the fact that i hagve a HUGE

migrane cause we just went from a very low, low pressure weather

system to a high pressure weather system.

Cheers and sorry its so looooong!!! lol

Chantelle

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Share on other sites

maybe see

> that this new definition does not exclude people with CHARGE. Is

CHARGE

> considered a developmental disability in other states? Does

anyone know?

> What is the obstacle to people getting services?

My biggest obstical is getting people to see how the combined

imparments affect my life. Also the ODSP form (dissability

application) does not have anywhere for people with multiple

dissabilities. Also it relys too much on physical abilities. Can you

move can you walk. stuff like that. Basicaly as it stands now,

someone who gets injured in a car accident and winds up in a

wheelchair gets through the dissability program much quicker then

someone with combined vision/hearing. *a family member got in a car

accident (she was driving drunk) and messed up her back but has no

other issues is on odsp.... i have a back issue, combined sensery

imparment, behavioural stuff, learning issues yet im having a H#$%

of a time getting on odsp... anyways....

>

>

>

> This is the federal definition of DD:

>

> DEVELOPMENTAL DISABILITY.-

>

> (A) IN GENERAL. -The term ''developmental disability'' means a

severe,

> chronic disability of an individual that-

>

As i said before, severe is too strong. it exludes many people. How

do you define severe anyways?

> (i) is attributable to a mental or physical impairment or

combination of

> mental and physical impairments;

>

They need to include sensory. If they JUST look at mental and

physical in day to day living i probably would not qualify. However

when i was in Miami i was in a " good " state. I should also mention i

had nearly od'd on cafeen pills a few days before i went to miami

cause i was panicing about the conference and flying and speaking in

public.

>

> 114 STAT. 1684 PUBLIC LAW 106-402-OCT. 30, 2000

>

>

> (ii) is manifested before the individual attains age 22;

This might be a problem if some of the health issues related to

charge dont manifest till later in life (ie bone density, thyroid)

Behaviour issues might strike later in life as well. Vision and

hearing could deteriorate after this age too. For me i am actualy

fortunate there is a missing amount of health info on my vision so

the amount of visual feild in my good eye is not available. Therefor

no way to traice if i was infact legaly blind in elementary/high

school. I know though my vision was a bit better 15 years ago.

>

> (iii) is likely to continue indefinitely;

>

Without medical intervention then i would say the behaviour and endo

stuff would continue to worsen for me. Same with back issues.

> (iv) results in substantial functional limitations in 3 or more of

the

> following areas of major life activity:

> (I) Self-care.

> (II) Receptive and expressive language.

> (III) Learning.

> (IV) Mobility.

> (V) Self-direction.

> (VI) Capacity for independent living.

> (VII) Economic self-sufficiency; and

>

> (v) reflects the individual's need for a combination and sequence

of

> special, interdisciplinary, or generic services, individualized

supports, or

> other forms of assistance that are of lifelong or extended

duration and are

> individually planned and coordinated.

>

I think the last point needs to mention multi sensery impairment

specificaly. Otherwise the last point would be very debatable

depending on the doctor you had available to fill out the

dissability report.

>

> Patty, Chantelle, , Chip, . I hope I'm not

forgetting

> anybody. do you guys fit in here? If not, why not? Ellen, I

think you do

> simply because of your physical needs. Am I right?

>

> Why are you guys falling through the cracks? If the definition is

the

> problem, how would it need to be altered to include you?

>

For myself i would probably just miss the dissability service

coverage because of the multi sensery stuff and no place to really

mention behaviour issues. I think another reason im falling between

the cracks is because i havnt had consistant doctors/medical care

over the years. Ive moved around. I think the last couple paragraphs

of my charge speech i did would help explain what needs to be

improved. I will pull out the speach i did and post the last couple

paragraphs that are related to this topic.

I hope this is helping you. :)

On a plus note i actualy had a GOOD talk with the odsp intake person

this evning. (in between my sobbing cause im going between manic and

depression atm) she said she is going to call my doctor directly! Id

be totaly exstatic if it wasnt for the fact that i hagve a HUGE

migrane cause we just went from a very low, low pressure weather

system to a high pressure weather system.

Cheers and sorry its so looooong!!! lol

Chantelle

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Share on other sites

I think she meant the old definition of developmental disability

> Well i somewhat dissagree. Depends on the sevarity of charge. for a

> mild charger the letters really dont help too much. According to the

> old definition i really only CHAE. Several of my " charge " features

> common to charge arnt even covered in the 6 letters. The old definition

> would be bad if say you didnt have facial palsy and obvious

> deformities. If you didnt have the " ears " you would be totaly missed.

> The old definition misses a LOT of potential charge cases. The old

> definition relys heavily on having a deformed floppy ear and

> colombomas. However Meg said in the Toronto conference (maby even the

> miami one too) that someone could have charge even without the charge

> ear or colombomas.

>

> By using the old system, if your child dosnt fit the old definitions

> then they could be excluded from being considered charge and thus not

> be considered elegable for a charge related dissability service if the

> case worker felt that the child wasnt charge cause the case worker was

> using the old system, that might be bad.

>

> Chantelle

>

>

>>

>> 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

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

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Share on other sites

I think she meant the old definition of developmental disability

> Well i somewhat dissagree. Depends on the sevarity of charge. for a

> mild charger the letters really dont help too much. According to the

> old definition i really only CHAE. Several of my " charge " features

> common to charge arnt even covered in the 6 letters. The old definition

> would be bad if say you didnt have facial palsy and obvious

> deformities. If you didnt have the " ears " you would be totaly missed.

> The old definition misses a LOT of potential charge cases. The old

> definition relys heavily on having a deformed floppy ear and

> colombomas. However Meg said in the Toronto conference (maby even the

> miami one too) that someone could have charge even without the charge

> ear or colombomas.

>

> By using the old system, if your child dosnt fit the old definitions

> then they could be excluded from being considered charge and thus not

> be considered elegable for a charge related dissability service if the

> case worker felt that the child wasnt charge cause the case worker was

> using the old system, that might be bad.

>

> Chantelle

>

>

>>

>> 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

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

Link to comment
Share on other sites

I think she meant the old definition of developmental disability

> Well i somewhat dissagree. Depends on the sevarity of charge. for a

> mild charger the letters really dont help too much. According to the

> old definition i really only CHAE. Several of my " charge " features

> common to charge arnt even covered in the 6 letters. The old definition

> would be bad if say you didnt have facial palsy and obvious

> deformities. If you didnt have the " ears " you would be totaly missed.

> The old definition misses a LOT of potential charge cases. The old

> definition relys heavily on having a deformed floppy ear and

> colombomas. However Meg said in the Toronto conference (maby even the

> miami one too) that someone could have charge even without the charge

> ear or colombomas.

>

> By using the old system, if your child dosnt fit the old definitions

> then they could be excluded from being considered charge and thus not

> be considered elegable for a charge related dissability service if the

> case worker felt that the child wasnt charge cause the case worker was

> using the old system, that might be bad.

>

> Chantelle

>

>

>>

>> 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

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

Link to comment
Share on other sites

chantell ur right bout ur odsp thing tis liek that with soem of our serers

out here im half liek you now im in a chair but but im not retarded or

anything or interlecutaly disabled so no help is for us right arghh it

fustrates em so mcuh sometimes there r days when i jsut want to hit soemoen

eg a government offical lol i did meet the premiar of our state once in hosp

doign his pre elcetion thing makingus all vote for him lalala and i said to

him now you have to fix up the school coz remember was bout three years ago

was going to the senior campus and no pasilites for people like me well gues

what one of the other mums laughed and said you knwo dont think he heard you

and she was so right LOL coz i was back there the beginning of the next year

the unit hadnt been built and there was one lift and one class i was in was

down this flight of steps with no lift my teacher got me down ok she is like

now walkings good for u buty theres this one in an electric chair he couldnt

get down so she was liek now have to change rooms if your expecting to

intergrate these kids and well she did it but the government didnt listen

she just went to the teacher that organises rooms and said we are moving

three students cant get in no attentionis paid to us at all we are like dots

in the wall lol

>

> maybe see

> > that this new definition does not exclude people with CHARGE. Is

> CHARGE

> > considered a developmental disability in other states? Does

> anyone know?

> > What is the obstacle to people getting services?

>

> My biggest obstical is getting people to see how the combined

> imparments affect my life. Also the ODSP form (dissability

> application) does not have anywhere for people with multiple

> dissabilities. Also it relys too much on physical abilities. Can you

> move can you walk. stuff like that. Basicaly as it stands now,

> someone who gets injured in a car accident and winds up in a

> wheelchair gets through the dissability program much quicker then

> someone with combined vision/hearing. *a family member got in a car

> accident (she was driving drunk) and messed up her back but has no

> other issues is on odsp.... i have a back issue, combined sensery

> imparment, behavioural stuff, learning issues yet im having a H#$%

> of a time getting on odsp... anyways....

>

>

> >

> >

> >

> > This is the federal definition of DD:

> >

> > DEVELOPMENTAL DISABILITY.-

> >

> > (A) IN GENERAL. -The term ''developmental disability'' means a

> severe,

> > chronic disability of an individual that-

> >

>

> As i said before, severe is too strong. it exludes many people. How

> do you define severe anyways?

>

> > (i) is attributable to a mental or physical impairment or

> combination of

> > mental and physical impairments;

> >

>

> They need to include sensory. If they JUST look at mental and

> physical in day to day living i probably would not qualify. However

> when i was in Miami i was in a " good " state. I should also mention i

> had nearly od'd on cafeen pills a few days before i went to miami

> cause i was panicing about the conference and flying and speaking in

> public.

>

> >

> > 114 STAT. 1684 PUBLIC LAW 106-402-OCT. 30, 2000

> >

> >

> > (ii) is manifested before the individual attains age 22;

>

> This might be a problem if some of the health issues related to

> charge dont manifest till later in life (ie bone density, thyroid)

> Behaviour issues might strike later in life as well. Vision and

> hearing could deteriorate after this age too. For me i am actualy

> fortunate there is a missing amount of health info on my vision so

> the amount of visual feild in my good eye is not available. Therefor

> no way to traice if i was infact legaly blind in elementary/high

> school. I know though my vision was a bit better 15 years ago.

>

> >

> > (iii) is likely to continue indefinitely;

> >

>

> Without medical intervention then i would say the behaviour and endo

> stuff would continue to worsen for me. Same with back issues.

>

>

> > (iv) results in substantial functional limitations in 3 or more of

> the

> > following areas of major life activity:

> > (I) Self-care.

> > (II) Receptive and expressive language.

> > (III) Learning.

> > (IV) Mobility.

> > (V) Self-direction.

> > (VI) Capacity for independent living.

> > (VII) Economic self-sufficiency; and

> >

> > (v) reflects the individual's need for a combination and sequence

> of

> > special, interdisciplinary, or generic services, individualized

> supports, or

> > other forms of assistance that are of lifelong or extended

> duration and are

> > individually planned and coordinated.

> >

>

> I think the last point needs to mention multi sensery impairment

> specificaly. Otherwise the last point would be very debatable

> depending on the doctor you had available to fill out the

> dissability report.

>

>

> >

>

> > Patty, Chantelle, , Chip, . I hope I'm not

> forgetting

> > anybody. do you guys fit in here? If not, why not? Ellen, I

> think you do

> > simply because of your physical needs. Am I right?

> >

> > Why are you guys falling through the cracks? If the definition is

> the

> > problem, how would it need to be altered to include you?

> >

>

> For myself i would probably just miss the dissability service

> coverage because of the multi sensery stuff and no place to really

> mention behaviour issues. I think another reason im falling between

> the cracks is because i havnt had consistant doctors/medical care

> over the years. Ive moved around. I think the last couple paragraphs

> of my charge speech i did would help explain what needs to be

> improved. I will pull out the speach i did and post the last couple

> paragraphs that are related to this topic.

>

> I hope this is helping you. :)

>

> On a plus note i actualy had a GOOD talk with the odsp intake person

> this evning. (in between my sobbing cause im going between manic and

> depression atm) she said she is going to call my doctor directly! Id

> be totaly exstatic if it wasnt for the fact that i hagve a HUGE

> migrane cause we just went from a very low, low pressure weather

> system to a high pressure weather system.

>

>

> Cheers and sorry its so looooong!!! lol

>

> Chantelle

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

Link to comment
Share on other sites

chantell ur right bout ur odsp thing tis liek that with soem of our serers

out here im half liek you now im in a chair but but im not retarded or

anything or interlecutaly disabled so no help is for us right arghh it

fustrates em so mcuh sometimes there r days when i jsut want to hit soemoen

eg a government offical lol i did meet the premiar of our state once in hosp

doign his pre elcetion thing makingus all vote for him lalala and i said to

him now you have to fix up the school coz remember was bout three years ago

was going to the senior campus and no pasilites for people like me well gues

what one of the other mums laughed and said you knwo dont think he heard you

and she was so right LOL coz i was back there the beginning of the next year

the unit hadnt been built and there was one lift and one class i was in was

down this flight of steps with no lift my teacher got me down ok she is like

now walkings good for u buty theres this one in an electric chair he couldnt

get down so she was liek now have to change rooms if your expecting to

intergrate these kids and well she did it but the government didnt listen

she just went to the teacher that organises rooms and said we are moving

three students cant get in no attentionis paid to us at all we are like dots

in the wall lol

>

> maybe see

> > that this new definition does not exclude people with CHARGE. Is

> CHARGE

> > considered a developmental disability in other states? Does

> anyone know?

> > What is the obstacle to people getting services?

>

> My biggest obstical is getting people to see how the combined

> imparments affect my life. Also the ODSP form (dissability

> application) does not have anywhere for people with multiple

> dissabilities. Also it relys too much on physical abilities. Can you

> move can you walk. stuff like that. Basicaly as it stands now,

> someone who gets injured in a car accident and winds up in a

> wheelchair gets through the dissability program much quicker then

> someone with combined vision/hearing. *a family member got in a car

> accident (she was driving drunk) and messed up her back but has no

> other issues is on odsp.... i have a back issue, combined sensery

> imparment, behavioural stuff, learning issues yet im having a H#$%

> of a time getting on odsp... anyways....

>

>

> >

> >

> >

> > This is the federal definition of DD:

> >

> > DEVELOPMENTAL DISABILITY.-

> >

> > (A) IN GENERAL. -The term ''developmental disability'' means a

> severe,

> > chronic disability of an individual that-

> >

>

> As i said before, severe is too strong. it exludes many people. How

> do you define severe anyways?

>

> > (i) is attributable to a mental or physical impairment or

> combination of

> > mental and physical impairments;

> >

>

> They need to include sensory. If they JUST look at mental and

> physical in day to day living i probably would not qualify. However

> when i was in Miami i was in a " good " state. I should also mention i

> had nearly od'd on cafeen pills a few days before i went to miami

> cause i was panicing about the conference and flying and speaking in

> public.

>

> >

> > 114 STAT. 1684 PUBLIC LAW 106-402-OCT. 30, 2000

> >

> >

> > (ii) is manifested before the individual attains age 22;

>

> This might be a problem if some of the health issues related to

> charge dont manifest till later in life (ie bone density, thyroid)

> Behaviour issues might strike later in life as well. Vision and

> hearing could deteriorate after this age too. For me i am actualy

> fortunate there is a missing amount of health info on my vision so

> the amount of visual feild in my good eye is not available. Therefor

> no way to traice if i was infact legaly blind in elementary/high

> school. I know though my vision was a bit better 15 years ago.

>

> >

> > (iii) is likely to continue indefinitely;

> >

>

> Without medical intervention then i would say the behaviour and endo

> stuff would continue to worsen for me. Same with back issues.

>

>

> > (iv) results in substantial functional limitations in 3 or more of

> the

> > following areas of major life activity:

> > (I) Self-care.

> > (II) Receptive and expressive language.

> > (III) Learning.

> > (IV) Mobility.

> > (V) Self-direction.

> > (VI) Capacity for independent living.

> > (VII) Economic self-sufficiency; and

> >

> > (v) reflects the individual's need for a combination and sequence

> of

> > special, interdisciplinary, or generic services, individualized

> supports, or

> > other forms of assistance that are of lifelong or extended

> duration and are

> > individually planned and coordinated.

> >

>

> I think the last point needs to mention multi sensery impairment

> specificaly. Otherwise the last point would be very debatable

> depending on the doctor you had available to fill out the

> dissability report.

>

>

> >

>

> > Patty, Chantelle, , Chip, . I hope I'm not

> forgetting

> > anybody. do you guys fit in here? If not, why not? Ellen, I

> think you do

> > simply because of your physical needs. Am I right?

> >

> > Why are you guys falling through the cracks? If the definition is

> the

> > problem, how would it need to be altered to include you?

> >

>

> For myself i would probably just miss the dissability service

> coverage because of the multi sensery stuff and no place to really

> mention behaviour issues. I think another reason im falling between

> the cracks is because i havnt had consistant doctors/medical care

> over the years. Ive moved around. I think the last couple paragraphs

> of my charge speech i did would help explain what needs to be

> improved. I will pull out the speach i did and post the last couple

> paragraphs that are related to this topic.

>

> I hope this is helping you. :)

>

> On a plus note i actualy had a GOOD talk with the odsp intake person

> this evning. (in between my sobbing cause im going between manic and

> depression atm) she said she is going to call my doctor directly! Id

> be totaly exstatic if it wasnt for the fact that i hagve a HUGE

> migrane cause we just went from a very low, low pressure weather

> system to a high pressure weather system.

>

>

> Cheers and sorry its so looooong!!! lol

>

> Chantelle

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

Link to comment
Share on other sites

chantell ur right bout ur odsp thing tis liek that with soem of our serers

out here im half liek you now im in a chair but but im not retarded or

anything or interlecutaly disabled so no help is for us right arghh it

fustrates em so mcuh sometimes there r days when i jsut want to hit soemoen

eg a government offical lol i did meet the premiar of our state once in hosp

doign his pre elcetion thing makingus all vote for him lalala and i said to

him now you have to fix up the school coz remember was bout three years ago

was going to the senior campus and no pasilites for people like me well gues

what one of the other mums laughed and said you knwo dont think he heard you

and she was so right LOL coz i was back there the beginning of the next year

the unit hadnt been built and there was one lift and one class i was in was

down this flight of steps with no lift my teacher got me down ok she is like

now walkings good for u buty theres this one in an electric chair he couldnt

get down so she was liek now have to change rooms if your expecting to

intergrate these kids and well she did it but the government didnt listen

she just went to the teacher that organises rooms and said we are moving

three students cant get in no attentionis paid to us at all we are like dots

in the wall lol

>

> maybe see

> > that this new definition does not exclude people with CHARGE. Is

> CHARGE

> > considered a developmental disability in other states? Does

> anyone know?

> > What is the obstacle to people getting services?

>

> My biggest obstical is getting people to see how the combined

> imparments affect my life. Also the ODSP form (dissability

> application) does not have anywhere for people with multiple

> dissabilities. Also it relys too much on physical abilities. Can you

> move can you walk. stuff like that. Basicaly as it stands now,

> someone who gets injured in a car accident and winds up in a

> wheelchair gets through the dissability program much quicker then

> someone with combined vision/hearing. *a family member got in a car

> accident (she was driving drunk) and messed up her back but has no

> other issues is on odsp.... i have a back issue, combined sensery

> imparment, behavioural stuff, learning issues yet im having a H#$%

> of a time getting on odsp... anyways....

>

>

> >

> >

> >

> > This is the federal definition of DD:

> >

> > DEVELOPMENTAL DISABILITY.-

> >

> > (A) IN GENERAL. -The term ''developmental disability'' means a

> severe,

> > chronic disability of an individual that-

> >

>

> As i said before, severe is too strong. it exludes many people. How

> do you define severe anyways?

>

> > (i) is attributable to a mental or physical impairment or

> combination of

> > mental and physical impairments;

> >

>

> They need to include sensory. If they JUST look at mental and

> physical in day to day living i probably would not qualify. However

> when i was in Miami i was in a " good " state. I should also mention i

> had nearly od'd on cafeen pills a few days before i went to miami

> cause i was panicing about the conference and flying and speaking in

> public.

>

> >

> > 114 STAT. 1684 PUBLIC LAW 106-402-OCT. 30, 2000

> >

> >

> > (ii) is manifested before the individual attains age 22;

>

> This might be a problem if some of the health issues related to

> charge dont manifest till later in life (ie bone density, thyroid)

> Behaviour issues might strike later in life as well. Vision and

> hearing could deteriorate after this age too. For me i am actualy

> fortunate there is a missing amount of health info on my vision so

> the amount of visual feild in my good eye is not available. Therefor

> no way to traice if i was infact legaly blind in elementary/high

> school. I know though my vision was a bit better 15 years ago.

>

> >

> > (iii) is likely to continue indefinitely;

> >

>

> Without medical intervention then i would say the behaviour and endo

> stuff would continue to worsen for me. Same with back issues.

>

>

> > (iv) results in substantial functional limitations in 3 or more of

> the

> > following areas of major life activity:

> > (I) Self-care.

> > (II) Receptive and expressive language.

> > (III) Learning.

> > (IV) Mobility.

> > (V) Self-direction.

> > (VI) Capacity for independent living.

> > (VII) Economic self-sufficiency; and

> >

> > (v) reflects the individual's need for a combination and sequence

> of

> > special, interdisciplinary, or generic services, individualized

> supports, or

> > other forms of assistance that are of lifelong or extended

> duration and are

> > individually planned and coordinated.

> >

>

> I think the last point needs to mention multi sensery impairment

> specificaly. Otherwise the last point would be very debatable

> depending on the doctor you had available to fill out the

> dissability report.

>

>

> >

>

> > Patty, Chantelle, , Chip, . I hope I'm not

> forgetting

> > anybody. do you guys fit in here? If not, why not? Ellen, I

> think you do

> > simply because of your physical needs. Am I right?

> >

> > Why are you guys falling through the cracks? If the definition is

> the

> > problem, how would it need to be altered to include you?

> >

>

> For myself i would probably just miss the dissability service

> coverage because of the multi sensery stuff and no place to really

> mention behaviour issues. I think another reason im falling between

> the cracks is because i havnt had consistant doctors/medical care

> over the years. Ive moved around. I think the last couple paragraphs

> of my charge speech i did would help explain what needs to be

> improved. I will pull out the speach i did and post the last couple

> paragraphs that are related to this topic.

>

> I hope this is helping you. :)

>

> On a plus note i actualy had a GOOD talk with the odsp intake person

> this evning. (in between my sobbing cause im going between manic and

> depression atm) she said she is going to call my doctor directly! Id

> be totaly exstatic if it wasnt for the fact that i hagve a HUGE

> migrane cause we just went from a very low, low pressure weather

> system to a high pressure weather system.

>

>

> Cheers and sorry its so looooong!!! lol

>

> Chantelle

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

Link to comment
Share on other sites

acutaly think shed even mentioned that oen to mum and the demountable

carpets stank like nothing on earth and were harbouring germs they have a

unit at blackwattle and now r closing that i am so glad i am not there

anymore or id be really really mad

>

> chantell ur right bout ur odsp thing tis liek that with soem of our serers

> out here im half liek you now im in a chair but but im not retarded or

> anything or interlecutaly disabled so no help is for us right arghh it

> fustrates em so mcuh sometimes there r days when i jsut want to hit soemoen

> eg a government offical lol i did meet the premiar of our state once in hosp

> doign his pre elcetion thing makingus all vote for him lalala and i said to

> him now you have to fix up the school coz remember was bout three years ago

> was going to the senior campus and no pasilites for people like me well gues

> what one of the other mums laughed and said you knwo dont think he heard you

> and she was so right LOL coz i was back there the beginning of the next year

> the unit hadnt been built and there was one lift and one class i was in was

> down this flight of steps with no lift my teacher got me down ok she is like

> now walkings good for u buty theres this one in an electric chair he couldnt

> get down so she was liek now have to change rooms if your expecting to

> intergrate these kids and well she did it but the government didnt listen

> she just went to the teacher that organises rooms and said we are moving

> three students cant get in no attentionis paid to us at all we are like dots

> in the wall lol

>

>

> >

> > maybe see

> > > that this new definition does not exclude people with CHARGE. Is

> > CHARGE

> > > considered a developmental disability in other states? Does

> > anyone know?

> > > What is the obstacle to people getting services?

> >

> > My biggest obstical is getting people to see how the combined

> > imparments affect my life. Also the ODSP form (dissability

> > application) does not have anywhere for people with multiple

> > dissabilities. Also it relys too much on physical abilities. Can you

> > move can you walk. stuff like that. Basicaly as it stands now,

> > someone who gets injured in a car accident and winds up in a

> > wheelchair gets through the dissability program much quicker then

> > someone with combined vision/hearing. *a family member got in a car

> > accident (she was driving drunk) and messed up her back but has no

> > other issues is on odsp.... i have a back issue, combined sensery

> > imparment, behavioural stuff, learning issues yet im having a H#$%

> > of a time getting on odsp... anyways....

> >

> >

> > >

> > >

> > >

> > > This is the federal definition of DD:

> > >

> > > DEVELOPMENTAL DISABILITY.-

> > >

> > > (A) IN GENERAL. -The term ''developmental disability'' means a

> > severe,

> > > chronic disability of an individual that-

> > >

> >

> > As i said before, severe is too strong. it exludes many people. How

> > do you define severe anyways?

> >

> > > (i) is attributable to a mental or physical impairment or

> > combination of

> > > mental and physical impairments;

> > >

> >

> > They need to include sensory. If they JUST look at mental and

> > physical in day to day living i probably would not qualify. However

> > when i was in Miami i was in a " good " state. I should also mention i

> > had nearly od'd on cafeen pills a few days before i went to miami

> > cause i was panicing about the conference and flying and speaking in

> > public.

> >

> > >

> > > 114 STAT. 1684 PUBLIC LAW 106-402-OCT. 30, 2000

> > >

> > >

> > > (ii) is manifested before the individual attains age 22;

> >

> > This might be a problem if some of the health issues related to

> > charge dont manifest till later in life (ie bone density, thyroid)

> > Behaviour issues might strike later in life as well. Vision and

> > hearing could deteriorate after this age too. For me i am actualy

> > fortunate there is a missing amount of health info on my vision so

> > the amount of visual feild in my good eye is not available. Therefor

> > no way to traice if i was infact legaly blind in elementary/high

> > school. I know though my vision was a bit better 15 years ago.

> >

> > >

> > > (iii) is likely to continue indefinitely;

> > >

> >

> > Without medical intervention then i would say the behaviour and endo

> > stuff would continue to worsen for me. Same with back issues.

> >

> >

> > > (iv) results in substantial functional limitations in 3 or more of

> > the

> > > following areas of major life activity:

> > > (I) Self-care.

> > > (II) Receptive and expressive language.

> > > (III) Learning.

> > > (IV) Mobility.

> > > (V) Self-direction.

> > > (VI) Capacity for independent living.

> > > (VII) Economic self-sufficiency; and

> > >

> > > (v) reflects the individual's need for a combination and sequence

> > of

> > > special, interdisciplinary, or generic services, individualized

> > supports, or

> > > other forms of assistance that are of lifelong or extended

> > duration and are

> > > individually planned and coordinated.

> > >

> >

> > I think the last point needs to mention multi sensery impairment

> > specificaly. Otherwise the last point would be very debatable

> > depending on the doctor you had available to fill out the

> > dissability report.

> >

> >

> > >

> >

> > > Patty, Chantelle, , Chip, . I hope I'm not

> > forgetting

> > > anybody. do you guys fit in here? If not, why not? Ellen, I

> > think you do

> > > simply because of your physical needs. Am I right?

> > >

> > > Why are you guys falling through the cracks? If the definition is

> > the

> > > problem, how would it need to be altered to include you?

> > >

> >

> > For myself i would probably just miss the dissability service

> > coverage because of the multi sensery stuff and no place to really

> > mention behaviour issues. I think another reason im falling between

> > the cracks is because i havnt had consistant doctors/medical care

> > over the years. Ive moved around. I think the last couple paragraphs

> > of my charge speech i did would help explain what needs to be

> > improved. I will pull out the speach i did and post the last couple

> > paragraphs that are related to this topic.

> >

> > I hope this is helping you. :)

> >

> > On a plus note i actualy had a GOOD talk with the odsp intake person

> > this evning. (in between my sobbing cause im going between manic and

> > depression atm) she said she is going to call my doctor directly! Id

> > be totaly exstatic if it wasnt for the fact that i hagve a HUGE

> > migrane cause we just went from a very low, low pressure weather

> > system to a high pressure weather system.

> >

> >

> > Cheers and sorry its so looooong!!! lol

> >

> > Chantelle

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > 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

> > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

> >

> > 8th International

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

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

> >

Link to comment
Share on other sites

acutaly think shed even mentioned that oen to mum and the demountable

carpets stank like nothing on earth and were harbouring germs they have a

unit at blackwattle and now r closing that i am so glad i am not there

anymore or id be really really mad

>

> chantell ur right bout ur odsp thing tis liek that with soem of our serers

> out here im half liek you now im in a chair but but im not retarded or

> anything or interlecutaly disabled so no help is for us right arghh it

> fustrates em so mcuh sometimes there r days when i jsut want to hit soemoen

> eg a government offical lol i did meet the premiar of our state once in hosp

> doign his pre elcetion thing makingus all vote for him lalala and i said to

> him now you have to fix up the school coz remember was bout three years ago

> was going to the senior campus and no pasilites for people like me well gues

> what one of the other mums laughed and said you knwo dont think he heard you

> and she was so right LOL coz i was back there the beginning of the next year

> the unit hadnt been built and there was one lift and one class i was in was

> down this flight of steps with no lift my teacher got me down ok she is like

> now walkings good for u buty theres this one in an electric chair he couldnt

> get down so she was liek now have to change rooms if your expecting to

> intergrate these kids and well she did it but the government didnt listen

> she just went to the teacher that organises rooms and said we are moving

> three students cant get in no attentionis paid to us at all we are like dots

> in the wall lol

>

>

> >

> > maybe see

> > > that this new definition does not exclude people with CHARGE. Is

> > CHARGE

> > > considered a developmental disability in other states? Does

> > anyone know?

> > > What is the obstacle to people getting services?

> >

> > My biggest obstical is getting people to see how the combined

> > imparments affect my life. Also the ODSP form (dissability

> > application) does not have anywhere for people with multiple

> > dissabilities. Also it relys too much on physical abilities. Can you

> > move can you walk. stuff like that. Basicaly as it stands now,

> > someone who gets injured in a car accident and winds up in a

> > wheelchair gets through the dissability program much quicker then

> > someone with combined vision/hearing. *a family member got in a car

> > accident (she was driving drunk) and messed up her back but has no

> > other issues is on odsp.... i have a back issue, combined sensery

> > imparment, behavioural stuff, learning issues yet im having a H#$%

> > of a time getting on odsp... anyways....

> >

> >

> > >

> > >

> > >

> > > This is the federal definition of DD:

> > >

> > > DEVELOPMENTAL DISABILITY.-

> > >

> > > (A) IN GENERAL. -The term ''developmental disability'' means a

> > severe,

> > > chronic disability of an individual that-

> > >

> >

> > As i said before, severe is too strong. it exludes many people. How

> > do you define severe anyways?

> >

> > > (i) is attributable to a mental or physical impairment or

> > combination of

> > > mental and physical impairments;

> > >

> >

> > They need to include sensory. If they JUST look at mental and

> > physical in day to day living i probably would not qualify. However

> > when i was in Miami i was in a " good " state. I should also mention i

> > had nearly od'd on cafeen pills a few days before i went to miami

> > cause i was panicing about the conference and flying and speaking in

> > public.

> >

> > >

> > > 114 STAT. 1684 PUBLIC LAW 106-402-OCT. 30, 2000

> > >

> > >

> > > (ii) is manifested before the individual attains age 22;

> >

> > This might be a problem if some of the health issues related to

> > charge dont manifest till later in life (ie bone density, thyroid)

> > Behaviour issues might strike later in life as well. Vision and

> > hearing could deteriorate after this age too. For me i am actualy

> > fortunate there is a missing amount of health info on my vision so

> > the amount of visual feild in my good eye is not available. Therefor

> > no way to traice if i was infact legaly blind in elementary/high

> > school. I know though my vision was a bit better 15 years ago.

> >

> > >

> > > (iii) is likely to continue indefinitely;

> > >

> >

> > Without medical intervention then i would say the behaviour and endo

> > stuff would continue to worsen for me. Same with back issues.

> >

> >

> > > (iv) results in substantial functional limitations in 3 or more of

> > the

> > > following areas of major life activity:

> > > (I) Self-care.

> > > (II) Receptive and expressive language.

> > > (III) Learning.

> > > (IV) Mobility.

> > > (V) Self-direction.

> > > (VI) Capacity for independent living.

> > > (VII) Economic self-sufficiency; and

> > >

> > > (v) reflects the individual's need for a combination and sequence

> > of

> > > special, interdisciplinary, or generic services, individualized

> > supports, or

> > > other forms of assistance that are of lifelong or extended

> > duration and are

> > > individually planned and coordinated.

> > >

> >

> > I think the last point needs to mention multi sensery impairment

> > specificaly. Otherwise the last point would be very debatable

> > depending on the doctor you had available to fill out the

> > dissability report.

> >

> >

> > >

> >

> > > Patty, Chantelle, , Chip, . I hope I'm not

> > forgetting

> > > anybody. do you guys fit in here? If not, why not? Ellen, I

> > think you do

> > > simply because of your physical needs. Am I right?

> > >

> > > Why are you guys falling through the cracks? If the definition is

> > the

> > > problem, how would it need to be altered to include you?

> > >

> >

> > For myself i would probably just miss the dissability service

> > coverage because of the multi sensery stuff and no place to really

> > mention behaviour issues. I think another reason im falling between

> > the cracks is because i havnt had consistant doctors/medical care

> > over the years. Ive moved around. I think the last couple paragraphs

> > of my charge speech i did would help explain what needs to be

> > improved. I will pull out the speach i did and post the last couple

> > paragraphs that are related to this topic.

> >

> > I hope this is helping you. :)

> >

> > On a plus note i actualy had a GOOD talk with the odsp intake person

> > this evning. (in between my sobbing cause im going between manic and

> > depression atm) she said she is going to call my doctor directly! Id

> > be totaly exstatic if it wasnt for the fact that i hagve a HUGE

> > migrane cause we just went from a very low, low pressure weather

> > system to a high pressure weather system.

> >

> >

> > Cheers and sorry its so looooong!!! lol

> >

> > Chantelle

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > 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

> > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

> >

> > 8th International

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

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

> >

Link to comment
Share on other sites

acutaly think shed even mentioned that oen to mum and the demountable

carpets stank like nothing on earth and were harbouring germs they have a

unit at blackwattle and now r closing that i am so glad i am not there

anymore or id be really really mad

>

> chantell ur right bout ur odsp thing tis liek that with soem of our serers

> out here im half liek you now im in a chair but but im not retarded or

> anything or interlecutaly disabled so no help is for us right arghh it

> fustrates em so mcuh sometimes there r days when i jsut want to hit soemoen

> eg a government offical lol i did meet the premiar of our state once in hosp

> doign his pre elcetion thing makingus all vote for him lalala and i said to

> him now you have to fix up the school coz remember was bout three years ago

> was going to the senior campus and no pasilites for people like me well gues

> what one of the other mums laughed and said you knwo dont think he heard you

> and she was so right LOL coz i was back there the beginning of the next year

> the unit hadnt been built and there was one lift and one class i was in was

> down this flight of steps with no lift my teacher got me down ok she is like

> now walkings good for u buty theres this one in an electric chair he couldnt

> get down so she was liek now have to change rooms if your expecting to

> intergrate these kids and well she did it but the government didnt listen

> she just went to the teacher that organises rooms and said we are moving

> three students cant get in no attentionis paid to us at all we are like dots

> in the wall lol

>

>

> >

> > maybe see

> > > that this new definition does not exclude people with CHARGE. Is

> > CHARGE

> > > considered a developmental disability in other states? Does

> > anyone know?

> > > What is the obstacle to people getting services?

> >

> > My biggest obstical is getting people to see how the combined

> > imparments affect my life. Also the ODSP form (dissability

> > application) does not have anywhere for people with multiple

> > dissabilities. Also it relys too much on physical abilities. Can you

> > move can you walk. stuff like that. Basicaly as it stands now,

> > someone who gets injured in a car accident and winds up in a

> > wheelchair gets through the dissability program much quicker then

> > someone with combined vision/hearing. *a family member got in a car

> > accident (she was driving drunk) and messed up her back but has no

> > other issues is on odsp.... i have a back issue, combined sensery

> > imparment, behavioural stuff, learning issues yet im having a H#$%

> > of a time getting on odsp... anyways....

> >

> >

> > >

> > >

> > >

> > > This is the federal definition of DD:

> > >

> > > DEVELOPMENTAL DISABILITY.-

> > >

> > > (A) IN GENERAL. -The term ''developmental disability'' means a

> > severe,

> > > chronic disability of an individual that-

> > >

> >

> > As i said before, severe is too strong. it exludes many people. How

> > do you define severe anyways?

> >

> > > (i) is attributable to a mental or physical impairment or

> > combination of

> > > mental and physical impairments;

> > >

> >

> > They need to include sensory. If they JUST look at mental and

> > physical in day to day living i probably would not qualify. However

> > when i was in Miami i was in a " good " state. I should also mention i

> > had nearly od'd on cafeen pills a few days before i went to miami

> > cause i was panicing about the conference and flying and speaking in

> > public.

> >

> > >

> > > 114 STAT. 1684 PUBLIC LAW 106-402-OCT. 30, 2000

> > >

> > >

> > > (ii) is manifested before the individual attains age 22;

> >

> > This might be a problem if some of the health issues related to

> > charge dont manifest till later in life (ie bone density, thyroid)

> > Behaviour issues might strike later in life as well. Vision and

> > hearing could deteriorate after this age too. For me i am actualy

> > fortunate there is a missing amount of health info on my vision so

> > the amount of visual feild in my good eye is not available. Therefor

> > no way to traice if i was infact legaly blind in elementary/high

> > school. I know though my vision was a bit better 15 years ago.

> >

> > >

> > > (iii) is likely to continue indefinitely;

> > >

> >

> > Without medical intervention then i would say the behaviour and endo

> > stuff would continue to worsen for me. Same with back issues.

> >

> >

> > > (iv) results in substantial functional limitations in 3 or more of

> > the

> > > following areas of major life activity:

> > > (I) Self-care.

> > > (II) Receptive and expressive language.

> > > (III) Learning.

> > > (IV) Mobility.

> > > (V) Self-direction.

> > > (VI) Capacity for independent living.

> > > (VII) Economic self-sufficiency; and

> > >

> > > (v) reflects the individual's need for a combination and sequence

> > of

> > > special, interdisciplinary, or generic services, individualized

> > supports, or

> > > other forms of assistance that are of lifelong or extended

> > duration and are

> > > individually planned and coordinated.

> > >

> >

> > I think the last point needs to mention multi sensery impairment

> > specificaly. Otherwise the last point would be very debatable

> > depending on the doctor you had available to fill out the

> > dissability report.

> >

> >

> > >

> >

> > > Patty, Chantelle, , Chip, . I hope I'm not

> > forgetting

> > > anybody. do you guys fit in here? If not, why not? Ellen, I

> > think you do

> > > simply because of your physical needs. Am I right?

> > >

> > > Why are you guys falling through the cracks? If the definition is

> > the

> > > problem, how would it need to be altered to include you?

> > >

> >

> > For myself i would probably just miss the dissability service

> > coverage because of the multi sensery stuff and no place to really

> > mention behaviour issues. I think another reason im falling between

> > the cracks is because i havnt had consistant doctors/medical care

> > over the years. Ive moved around. I think the last couple paragraphs

> > of my charge speech i did would help explain what needs to be

> > improved. I will pull out the speach i did and post the last couple

> > paragraphs that are related to this topic.

> >

> > I hope this is helping you. :)

> >

> > On a plus note i actualy had a GOOD talk with the odsp intake person

> > this evning. (in between my sobbing cause im going between manic and

> > depression atm) she said she is going to call my doctor directly! Id

> > be totaly exstatic if it wasnt for the fact that i hagve a HUGE

> > migrane cause we just went from a very low, low pressure weather

> > system to a high pressure weather system.

> >

> >

> > Cheers and sorry its so looooong!!! lol

> >

> > Chantelle

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > 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

> > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

> >

> > 8th International

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

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

> >

Link to comment
Share on other sites

that definition is right my borhter has the email for our fedral member

should i give that to him to email it to him like our local one LOL knows

him through uni unions i might jsut forward that to him to give to oru

memmber we really do need more help for people like me living in a beach

side suburb eastern subs only support i get is out in the west a great

network of services but to far away you remember me telling you all hwo we

were looking well we did find afford and we did find northcott which i was

allways with but parramata from coogee is like from say were you are to

where kim is if that makes sence and theres oen otu further than there near

where i do respite and all the others are around there and ones that are

over here here are for the interlect6ual disabled as i have told you again

and again nwo ur president is with our primeminister on many things nwo why

dont they just skip iraq and go into partnership on this issue it is a world

wide issue i think we should put it to them nwo how is the question i ask

but we really really should michelle give my thing to your people and see

wat they think my opinion is pull the troops otua iraq go into partnership

on soemting more important and if we get another terrorist attack well worry

bout ti when it happens nto befor as doctors tell us all with oru manny

problems ellen

>

> acutaly think shed even mentioned that oen to mum and the demountable

> carpets stank like nothing on earth and were harbouring germs they have a

> unit at blackwattle and now r closing that i am so glad i am not there

> anymore or id be really really mad

>

>

> >

> > chantell ur right bout ur odsp thing tis liek that with soem of our

> > serers out here im half liek you now im in a chair but but im not retarded

> > or anything or interlecutaly disabled so no help is for us right arghh it

> > fustrates em so mcuh sometimes there r days when i jsut want to hit soemoen

> > eg a government offical lol i did meet the premiar of our state once in hosp

> > doign his pre elcetion thing makingus all vote for him lalala and i said to

> > him now you have to fix up the school coz remember was bout three years ago

> > was going to the senior campus and no pasilites for people like me well gues

> > what one of the other mums laughed and said you knwo dont think he heard you

> > and she was so right LOL coz i was back there the beginning of the next year

> > the unit hadnt been built and there was one lift and one class i was in was

> > down this flight of steps with no lift my teacher got me down ok she is like

> > now walkings good for u buty theres this one in an electric chair he couldnt

> > get down so she was liek now have to change rooms if your expecting to

> > intergrate these kids and well she did it but the government didnt listen

> > she just went to the teacher that organises rooms and said we are moving

> > three students cant get in no attentionis paid to us at all we are like dots

> > in the wall lol

> >

> >

> > >

> > > maybe see

> > > > that this new definition does not exclude people with CHARGE. Is

> > > CHARGE

> > > > considered a developmental disability in other states? Does

> > > anyone know?

> > > > What is the obstacle to people getting services?

> > >

> > > My biggest obstical is getting people to see how the combined

> > > imparments affect my life. Also the ODSP form (dissability

> > > application) does not have anywhere for people with multiple

> > > dissabilities. Also it relys too much on physical abilities. Can you

> > > move can you walk. stuff like that. Basicaly as it stands now,

> > > someone who gets injured in a car accident and winds up in a

> > > wheelchair gets through the dissability program much quicker then

> > > someone with combined vision/hearing. *a family member got in a car

> > > accident (she was driving drunk) and messed up her back but has no

> > > other issues is on odsp.... i have a back issue, combined sensery

> > > imparment, behavioural stuff, learning issues yet im having a H#$%

> > > of a time getting on odsp... anyways....

> > >

> > >

> > > >

> > > >

> > > >

> > > > This is the federal definition of DD:

> > > >

> > > > DEVELOPMENTAL DISABILITY.-

> > > >

> > > > (A) IN GENERAL. -The term ''developmental disability'' means a

> > > severe,

> > > > chronic disability of an individual that-

> > > >

> > >

> > > As i said before, severe is too strong. it exludes many people. How

> > > do you define severe anyways?

> > >

> > > > (i) is attributable to a mental or physical impairment or

> > > combination of

> > > > mental and physical impairments;

> > > >

> > >

> > > They need to include sensory. If they JUST look at mental and

> > > physical in day to day living i probably would not qualify. However

> > > when i was in Miami i was in a " good " state. I should also mention i

> > > had nearly od'd on cafeen pills a few days before i went to miami

> > > cause i was panicing about the conference and flying and speaking in

> > > public.

> > >

> > > >

> > > > 114 STAT. 1684 PUBLIC LAW 106-402-OCT. 30, 2000

> > > >

> > > >

> > > > (ii) is manifested before the individual attains age 22;

> > >

> > > This might be a problem if some of the health issues related to

> > > charge dont manifest till later in life (ie bone density, thyroid)

> > > Behaviour issues might strike later in life as well. Vision and

> > > hearing could deteriorate after this age too. For me i am actualy

> > > fortunate there is a missing amount of health info on my vision so

> > > the amount of visual feild in my good eye is not available. Therefor

> > > no way to traice if i was infact legaly blind in elementary/high

> > > school. I know though my vision was a bit better 15 years ago.

> > >

> > > >

> > > > (iii) is likely to continue indefinitely;

> > > >

> > >

> > > Without medical intervention then i would say the behaviour and endo

> > > stuff would continue to worsen for me. Same with back issues.

> > >

> > >

> > > > (iv) results in substantial functional limitations in 3 or more of

> > > the

> > > > following areas of major life activity:

> > > > (I) Self-care.

> > > > (II) Receptive and expressive language.

> > > > (III) Learning.

> > > > (IV) Mobility.

> > > > (V) Self-direction.

> > > > (VI) Capacity for independent living.

> > > > (VII) Economic self-sufficiency; and

> > > >

> > > > (v) reflects the individual's need for a combination and sequence

> > > of

> > > > special, interdisciplinary, or generic services, individualized

> > > supports, or

> > > > other forms of assistance that are of lifelong or extended

> > > duration and are

> > > > individually planned and coordinated.

> > > >

> > >

> > > I think the last point needs to mention multi sensery impairment

> > > specificaly. Otherwise the last point would be very debatable

> > > depending on the doctor you had available to fill out the

> > > dissability report.

> > >

> > >

> > > >

> > >

> > > > Patty, Chantelle, , Chip, . I hope I'm not

> > > forgetting

> > > > anybody. do you guys fit in here? If not, why not? Ellen, I

> > > think you do

> > > > simply because of your physical needs. Am I right?

> > > >

> > > > Why are you guys falling through the cracks? If the definition is

> > > the

> > > > problem, how would it need to be altered to include you?

> > > >

> > >

> > > For myself i would probably just miss the dissability service

> > > coverage because of the multi sensery stuff and no place to really

> > > mention behaviour issues. I think another reason im falling between

> > > the cracks is because i havnt had consistant doctors/medical care

> > > over the years. Ive moved around. I think the last couple paragraphs

> > > of my charge speech i did would help explain what needs to be

> > > improved. I will pull out the speach i did and post the last couple

> > > paragraphs that are related to this topic.

> > >

> > > I hope this is helping you. :)

> > >

> > > On a plus note i actualy had a GOOD talk with the odsp intake person

> > > this evning. (in between my sobbing cause im going between manic and

> > > depression atm) she said she is going to call my doctor directly! Id

> > > be totaly exstatic if it wasnt for the fact that i hagve a HUGE

> > > migrane cause we just went from a very low, low pressure weather

> > > system to a high pressure weather system.

> > >

> > >

> > > Cheers and sorry its so looooong!!! lol

> > >

> > > Chantelle

> > >

> > >

> > >

> > >

> > >

> > > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > > http://www.imagestation.com/album/?id=2117043995

> > >

> > > 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

> > > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

> > >

> > > 8th International

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

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

> > >

Link to comment
Share on other sites

that definition is right my borhter has the email for our fedral member

should i give that to him to email it to him like our local one LOL knows

him through uni unions i might jsut forward that to him to give to oru

memmber we really do need more help for people like me living in a beach

side suburb eastern subs only support i get is out in the west a great

network of services but to far away you remember me telling you all hwo we

were looking well we did find afford and we did find northcott which i was

allways with but parramata from coogee is like from say were you are to

where kim is if that makes sence and theres oen otu further than there near

where i do respite and all the others are around there and ones that are

over here here are for the interlect6ual disabled as i have told you again

and again nwo ur president is with our primeminister on many things nwo why

dont they just skip iraq and go into partnership on this issue it is a world

wide issue i think we should put it to them nwo how is the question i ask

but we really really should michelle give my thing to your people and see

wat they think my opinion is pull the troops otua iraq go into partnership

on soemting more important and if we get another terrorist attack well worry

bout ti when it happens nto befor as doctors tell us all with oru manny

problems ellen

>

> acutaly think shed even mentioned that oen to mum and the demountable

> carpets stank like nothing on earth and were harbouring germs they have a

> unit at blackwattle and now r closing that i am so glad i am not there

> anymore or id be really really mad

>

>

> >

> > chantell ur right bout ur odsp thing tis liek that with soem of our

> > serers out here im half liek you now im in a chair but but im not retarded

> > or anything or interlecutaly disabled so no help is for us right arghh it

> > fustrates em so mcuh sometimes there r days when i jsut want to hit soemoen

> > eg a government offical lol i did meet the premiar of our state once in hosp

> > doign his pre elcetion thing makingus all vote for him lalala and i said to

> > him now you have to fix up the school coz remember was bout three years ago

> > was going to the senior campus and no pasilites for people like me well gues

> > what one of the other mums laughed and said you knwo dont think he heard you

> > and she was so right LOL coz i was back there the beginning of the next year

> > the unit hadnt been built and there was one lift and one class i was in was

> > down this flight of steps with no lift my teacher got me down ok she is like

> > now walkings good for u buty theres this one in an electric chair he couldnt

> > get down so she was liek now have to change rooms if your expecting to

> > intergrate these kids and well she did it but the government didnt listen

> > she just went to the teacher that organises rooms and said we are moving

> > three students cant get in no attentionis paid to us at all we are like dots

> > in the wall lol

> >

> >

> > >

> > > maybe see

> > > > that this new definition does not exclude people with CHARGE. Is

> > > CHARGE

> > > > considered a developmental disability in other states? Does

> > > anyone know?

> > > > What is the obstacle to people getting services?

> > >

> > > My biggest obstical is getting people to see how the combined

> > > imparments affect my life. Also the ODSP form (dissability

> > > application) does not have anywhere for people with multiple

> > > dissabilities. Also it relys too much on physical abilities. Can you

> > > move can you walk. stuff like that. Basicaly as it stands now,

> > > someone who gets injured in a car accident and winds up in a

> > > wheelchair gets through the dissability program much quicker then

> > > someone with combined vision/hearing. *a family member got in a car

> > > accident (she was driving drunk) and messed up her back but has no

> > > other issues is on odsp.... i have a back issue, combined sensery

> > > imparment, behavioural stuff, learning issues yet im having a H#$%

> > > of a time getting on odsp... anyways....

> > >

> > >

> > > >

> > > >

> > > >

> > > > This is the federal definition of DD:

> > > >

> > > > DEVELOPMENTAL DISABILITY.-

> > > >

> > > > (A) IN GENERAL. -The term ''developmental disability'' means a

> > > severe,

> > > > chronic disability of an individual that-

> > > >

> > >

> > > As i said before, severe is too strong. it exludes many people. How

> > > do you define severe anyways?

> > >

> > > > (i) is attributable to a mental or physical impairment or

> > > combination of

> > > > mental and physical impairments;

> > > >

> > >

> > > They need to include sensory. If they JUST look at mental and

> > > physical in day to day living i probably would not qualify. However

> > > when i was in Miami i was in a " good " state. I should also mention i

> > > had nearly od'd on cafeen pills a few days before i went to miami

> > > cause i was panicing about the conference and flying and speaking in

> > > public.

> > >

> > > >

> > > > 114 STAT. 1684 PUBLIC LAW 106-402-OCT. 30, 2000

> > > >

> > > >

> > > > (ii) is manifested before the individual attains age 22;

> > >

> > > This might be a problem if some of the health issues related to

> > > charge dont manifest till later in life (ie bone density, thyroid)

> > > Behaviour issues might strike later in life as well. Vision and

> > > hearing could deteriorate after this age too. For me i am actualy

> > > fortunate there is a missing amount of health info on my vision so

> > > the amount of visual feild in my good eye is not available. Therefor

> > > no way to traice if i was infact legaly blind in elementary/high

> > > school. I know though my vision was a bit better 15 years ago.

> > >

> > > >

> > > > (iii) is likely to continue indefinitely;

> > > >

> > >

> > > Without medical intervention then i would say the behaviour and endo

> > > stuff would continue to worsen for me. Same with back issues.

> > >

> > >

> > > > (iv) results in substantial functional limitations in 3 or more of

> > > the

> > > > following areas of major life activity:

> > > > (I) Self-care.

> > > > (II) Receptive and expressive language.

> > > > (III) Learning.

> > > > (IV) Mobility.

> > > > (V) Self-direction.

> > > > (VI) Capacity for independent living.

> > > > (VII) Economic self-sufficiency; and

> > > >

> > > > (v) reflects the individual's need for a combination and sequence

> > > of

> > > > special, interdisciplinary, or generic services, individualized

> > > supports, or

> > > > other forms of assistance that are of lifelong or extended

> > > duration and are

> > > > individually planned and coordinated.

> > > >

> > >

> > > I think the last point needs to mention multi sensery impairment

> > > specificaly. Otherwise the last point would be very debatable

> > > depending on the doctor you had available to fill out the

> > > dissability report.

> > >

> > >

> > > >

> > >

> > > > Patty, Chantelle, , Chip, . I hope I'm not

> > > forgetting

> > > > anybody. do you guys fit in here? If not, why not? Ellen, I

> > > think you do

> > > > simply because of your physical needs. Am I right?

> > > >

> > > > Why are you guys falling through the cracks? If the definition is

> > > the

> > > > problem, how would it need to be altered to include you?

> > > >

> > >

> > > For myself i would probably just miss the dissability service

> > > coverage because of the multi sensery stuff and no place to really

> > > mention behaviour issues. I think another reason im falling between

> > > the cracks is because i havnt had consistant doctors/medical care

> > > over the years. Ive moved around. I think the last couple paragraphs

> > > of my charge speech i did would help explain what needs to be

> > > improved. I will pull out the speach i did and post the last couple

> > > paragraphs that are related to this topic.

> > >

> > > I hope this is helping you. :)

> > >

> > > On a plus note i actualy had a GOOD talk with the odsp intake person

> > > this evning. (in between my sobbing cause im going between manic and

> > > depression atm) she said she is going to call my doctor directly! Id

> > > be totaly exstatic if it wasnt for the fact that i hagve a HUGE

> > > migrane cause we just went from a very low, low pressure weather

> > > system to a high pressure weather system.

> > >

> > >

> > > Cheers and sorry its so looooong!!! lol

> > >

> > > Chantelle

> > >

> > >

> > >

> > >

> > >

> > > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > > http://www.imagestation.com/album/?id=2117043995

> > >

> > > 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

> > > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

> > >

> > > 8th International

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

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

> > >

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that definition is right my borhter has the email for our fedral member

should i give that to him to email it to him like our local one LOL knows

him through uni unions i might jsut forward that to him to give to oru

memmber we really do need more help for people like me living in a beach

side suburb eastern subs only support i get is out in the west a great

network of services but to far away you remember me telling you all hwo we

were looking well we did find afford and we did find northcott which i was

allways with but parramata from coogee is like from say were you are to

where kim is if that makes sence and theres oen otu further than there near

where i do respite and all the others are around there and ones that are

over here here are for the interlect6ual disabled as i have told you again

and again nwo ur president is with our primeminister on many things nwo why

dont they just skip iraq and go into partnership on this issue it is a world

wide issue i think we should put it to them nwo how is the question i ask

but we really really should michelle give my thing to your people and see

wat they think my opinion is pull the troops otua iraq go into partnership

on soemting more important and if we get another terrorist attack well worry

bout ti when it happens nto befor as doctors tell us all with oru manny

problems ellen

>

> acutaly think shed even mentioned that oen to mum and the demountable

> carpets stank like nothing on earth and were harbouring germs they have a

> unit at blackwattle and now r closing that i am so glad i am not there

> anymore or id be really really mad

>

>

> >

> > chantell ur right bout ur odsp thing tis liek that with soem of our

> > serers out here im half liek you now im in a chair but but im not retarded

> > or anything or interlecutaly disabled so no help is for us right arghh it

> > fustrates em so mcuh sometimes there r days when i jsut want to hit soemoen

> > eg a government offical lol i did meet the premiar of our state once in hosp

> > doign his pre elcetion thing makingus all vote for him lalala and i said to

> > him now you have to fix up the school coz remember was bout three years ago

> > was going to the senior campus and no pasilites for people like me well gues

> > what one of the other mums laughed and said you knwo dont think he heard you

> > and she was so right LOL coz i was back there the beginning of the next year

> > the unit hadnt been built and there was one lift and one class i was in was

> > down this flight of steps with no lift my teacher got me down ok she is like

> > now walkings good for u buty theres this one in an electric chair he couldnt

> > get down so she was liek now have to change rooms if your expecting to

> > intergrate these kids and well she did it but the government didnt listen

> > she just went to the teacher that organises rooms and said we are moving

> > three students cant get in no attentionis paid to us at all we are like dots

> > in the wall lol

> >

> >

> > >

> > > maybe see

> > > > that this new definition does not exclude people with CHARGE. Is

> > > CHARGE

> > > > considered a developmental disability in other states? Does

> > > anyone know?

> > > > What is the obstacle to people getting services?

> > >

> > > My biggest obstical is getting people to see how the combined

> > > imparments affect my life. Also the ODSP form (dissability

> > > application) does not have anywhere for people with multiple

> > > dissabilities. Also it relys too much on physical abilities. Can you

> > > move can you walk. stuff like that. Basicaly as it stands now,

> > > someone who gets injured in a car accident and winds up in a

> > > wheelchair gets through the dissability program much quicker then

> > > someone with combined vision/hearing. *a family member got in a car

> > > accident (she was driving drunk) and messed up her back but has no

> > > other issues is on odsp.... i have a back issue, combined sensery

> > > imparment, behavioural stuff, learning issues yet im having a H#$%

> > > of a time getting on odsp... anyways....

> > >

> > >

> > > >

> > > >

> > > >

> > > > This is the federal definition of DD:

> > > >

> > > > DEVELOPMENTAL DISABILITY.-

> > > >

> > > > (A) IN GENERAL. -The term ''developmental disability'' means a

> > > severe,

> > > > chronic disability of an individual that-

> > > >

> > >

> > > As i said before, severe is too strong. it exludes many people. How

> > > do you define severe anyways?

> > >

> > > > (i) is attributable to a mental or physical impairment or

> > > combination of

> > > > mental and physical impairments;

> > > >

> > >

> > > They need to include sensory. If they JUST look at mental and

> > > physical in day to day living i probably would not qualify. However

> > > when i was in Miami i was in a " good " state. I should also mention i

> > > had nearly od'd on cafeen pills a few days before i went to miami

> > > cause i was panicing about the conference and flying and speaking in

> > > public.

> > >

> > > >

> > > > 114 STAT. 1684 PUBLIC LAW 106-402-OCT. 30, 2000

> > > >

> > > >

> > > > (ii) is manifested before the individual attains age 22;

> > >

> > > This might be a problem if some of the health issues related to

> > > charge dont manifest till later in life (ie bone density, thyroid)

> > > Behaviour issues might strike later in life as well. Vision and

> > > hearing could deteriorate after this age too. For me i am actualy

> > > fortunate there is a missing amount of health info on my vision so

> > > the amount of visual feild in my good eye is not available. Therefor

> > > no way to traice if i was infact legaly blind in elementary/high

> > > school. I know though my vision was a bit better 15 years ago.

> > >

> > > >

> > > > (iii) is likely to continue indefinitely;

> > > >

> > >

> > > Without medical intervention then i would say the behaviour and endo

> > > stuff would continue to worsen for me. Same with back issues.

> > >

> > >

> > > > (iv) results in substantial functional limitations in 3 or more of

> > > the

> > > > following areas of major life activity:

> > > > (I) Self-care.

> > > > (II) Receptive and expressive language.

> > > > (III) Learning.

> > > > (IV) Mobility.

> > > > (V) Self-direction.

> > > > (VI) Capacity for independent living.

> > > > (VII) Economic self-sufficiency; and

> > > >

> > > > (v) reflects the individual's need for a combination and sequence

> > > of

> > > > special, interdisciplinary, or generic services, individualized

> > > supports, or

> > > > other forms of assistance that are of lifelong or extended

> > > duration and are

> > > > individually planned and coordinated.

> > > >

> > >

> > > I think the last point needs to mention multi sensery impairment

> > > specificaly. Otherwise the last point would be very debatable

> > > depending on the doctor you had available to fill out the

> > > dissability report.

> > >

> > >

> > > >

> > >

> > > > Patty, Chantelle, , Chip, . I hope I'm not

> > > forgetting

> > > > anybody. do you guys fit in here? If not, why not? Ellen, I

> > > think you do

> > > > simply because of your physical needs. Am I right?

> > > >

> > > > Why are you guys falling through the cracks? If the definition is

> > > the

> > > > problem, how would it need to be altered to include you?

> > > >

> > >

> > > For myself i would probably just miss the dissability service

> > > coverage because of the multi sensery stuff and no place to really

> > > mention behaviour issues. I think another reason im falling between

> > > the cracks is because i havnt had consistant doctors/medical care

> > > over the years. Ive moved around. I think the last couple paragraphs

> > > of my charge speech i did would help explain what needs to be

> > > improved. I will pull out the speach i did and post the last couple

> > > paragraphs that are related to this topic.

> > >

> > > I hope this is helping you. :)

> > >

> > > On a plus note i actualy had a GOOD talk with the odsp intake person

> > > this evning. (in between my sobbing cause im going between manic and

> > > depression atm) she said she is going to call my doctor directly! Id

> > > be totaly exstatic if it wasnt for the fact that i hagve a HUGE

> > > migrane cause we just went from a very low, low pressure weather

> > > system to a high pressure weather system.

> > >

> > >

> > > Cheers and sorry its so looooong!!! lol

> > >

> > > Chantelle

> > >

> > >

> > >

> > >

> > >

> > > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > > http://www.imagestation.com/album/?id=2117043995

> > >

> > > 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

> > > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

> > >

> > > 8th International

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

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

> > >

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Share on other sites

This is where we have found the Sensory Impact Matrices to be so

useful...although arbitrary and certainly not perfect, they give the

'powers that be' and decision makers regarding funding a clearer idea

of the enormous impact of everything that is going on...Numerical

values for hearing loss, vision loss, medical conditions, physical

disability, neurological, etc. (1 - 10; 1 = no impact, 10 = highest

impact) are then multiplied rather than simply added together,

compared to a 'typical' child with no vision or hearing loss, no

medical conditions etc. whose impact would multiply out to 1...a

child with CHARGE may multiply out to 80,000! This is not a

measurement as such, but serves to demonstrate the overall impact. In

my experience, it helps others to get the picture.

Sharon from West Oz

>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

>>

>>

>>

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This is where we have found the Sensory Impact Matrices to be so

useful...although arbitrary and certainly not perfect, they give the

'powers that be' and decision makers regarding funding a clearer idea

of the enormous impact of everything that is going on...Numerical

values for hearing loss, vision loss, medical conditions, physical

disability, neurological, etc. (1 - 10; 1 = no impact, 10 = highest

impact) are then multiplied rather than simply added together,

compared to a 'typical' child with no vision or hearing loss, no

medical conditions etc. whose impact would multiply out to 1...a

child with CHARGE may multiply out to 80,000! This is not a

measurement as such, but serves to demonstrate the overall impact. In

my experience, it helps others to get the picture.

Sharon from West Oz

>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

>>

>>

>>

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This is where we have found the Sensory Impact Matrices to be so

useful...although arbitrary and certainly not perfect, they give the

'powers that be' and decision makers regarding funding a clearer idea

of the enormous impact of everything that is going on...Numerical

values for hearing loss, vision loss, medical conditions, physical

disability, neurological, etc. (1 - 10; 1 = no impact, 10 = highest

impact) are then multiplied rather than simply added together,

compared to a 'typical' child with no vision or hearing loss, no

medical conditions etc. whose impact would multiply out to 1...a

child with CHARGE may multiply out to 80,000! This is not a

measurement as such, but serves to demonstrate the overall impact. In

my experience, it helps others to get the picture.

Sharon from West Oz

>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

>>

>>

>>

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Chantelle-

You are absolutely right that the new definition is the best and what we

hope all systems will use. But in our case, the fact that these particular

folks were still thinking in terms of old ideas was to our benefit. That

was just in this one situation. I wouldn't want the old definition to be

perpetuated.

Michele W

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

Re: defintion of developmental disability

Well i somewhat dissagree. Depends on the sevarity of charge. for a

mild charger the letters really dont help too much.

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Chantelle-

You are absolutely right that the new definition is the best and what we

hope all systems will use. But in our case, the fact that these particular

folks were still thinking in terms of old ideas was to our benefit. That

was just in this one situation. I wouldn't want the old definition to be

perpetuated.

Michele W

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

Re: defintion of developmental disability

Well i somewhat dissagree. Depends on the sevarity of charge. for a

mild charger the letters really dont help too much.

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