Re: defintion of developmental disability

February 17, 2006

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-.

>

February 18, 2006

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-.

> >

February 18, 2006

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

February 18, 2006

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

February 18, 2006

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

February 18, 2006

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

February 18, 2006