CHARGE: Re: To on independent Living

July 14, 2007

,

Getting living away from us in a supported arrangment was no

easy endevor but it was the best thing I could have done for .

His MR is mild and he had his dreams of doing what he saw his

siblings and friends doing, Moving to an independent life separate

from Mom and Dad. My pending heart surgery gave me the wake up call.

What would happen to if I was gone. A long term plan beyond our

being here needed to be thought about. I too looked at possibilities

of living with his sisters. Our oldest, who is adopted also

does not have a stable situation, our middle daughter(biological) was

saying she would take care of him but I saw that her life was so full

just taking care of herself I felt she couldn't be the answer to a

secure future for . Henry and I had taken the responsibility of

adoping a special needs child not our kids. I truely felt it wasn't a

responsibility that was fair to them or . What wanted for

his life wasn't going to mesh with the life his sisters were living.

I know there are allot of parents who may not agree with me but

whether you child has mild or severe MR I've realized how important

it is to secure a MR diagnosis while they are still under the age of

21.. Funding without the MR diagnosis is almost non-existant. Even

when you have the diagnosis funding can be extremely hard to get in

almost every state. Because I have already been the " route " I have

learned ways to get in and around waiting lists. Some of the means

can and will go against the gain of your heart but in the end I found

that you have to play the politacal game. Yes, it sounds terible but

unforunatly here in PA it was and still is very political. I did not

attempt to secure MR services until was 20 years old. They

refused us services at first because his IQ was 74. Their cut off

point was 70. By some research I learned there was a 5 pt. varience

when a individual has other challenges such as deafness of sight

loss. I found it very strange that the agency who exists within the

venue of MR didn't know this fact. They claimed they didn't.

For any of you who are going for the MR diagnosis after the age of 21

know that the federal guidlines state MR has to be exsisting before

the age of 21 not tested before the age of 21. I'll give you an

example I worked with: A young man in his 30's who is deaf,autistic,

moderate MR but having Island Sevant (gifed) area of puzzle solving

and artistic drawing. While attending school he only had the written

part of IQ testing because of his deafness. He scored well into the

90's because of his Island Sevant skills and that part of testing

involves puzzle solving. We arranged full testing to be done by a

psychologist who was qualified to test deaf with emphasis on

Independent living skill. He tested in the low 60's. Medical records

showed his condition was from the time of birth. His county MR agency

tried to refuse him services because testing was done after the age

of 21. We requested fair hearing because we knew the state was not

adhearing to the federal guidelines on MR diagnosis and waiver

funding. This individual is living in the home with my son, .

I am willing to share any knowledge I have involving the process of

waiver and independent living.

mom to (31)

-- In CHARGE , KAV427@... wrote:

>

> ,

> I loved reading your post. My son Mark is 23 and I

just can't

> picture him ever living away from home. I know it is wise to start

things going

> in that direction but it is just so hard. He is SO dependent on us

for

> everything and he is also MR and deaf. He is non verbal and would

also need 24/7

> supervision. I am a nurse and just have not seen a lot of positives

with the group

> home population I have encountered. I know we are not getting any

younger and

> he only has one sibling who needs to work and support herself. Keep

me posted

> on his situation.

>

> **************************************

> Get a

> sneak peak of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

>

July 15, 2007

-

We are trying to change the state definition of Developmental Disability

because it also uses the IQ<70 standard. The Federal Definition uses

deficits in areas of daily living - a much more accurate method. As we know

- it's possible to have a high IQ (as in autism or CP - and CHARGE) and

still have severe deficits that require support.

This is such a touchy subject. It's come up here before. Of course, most

of us - and our kids - would prefer not to have an label of MR or anything

like it. But the truth is that we need it to get services. And the

Developmental Disability label, when using the Federal definition, does

include Aubrie. The IQ method does not - unless I agree to IQ testing with

a person who doesn't understand her multiple impairments - then they may do

a poor job of testing and find her IQ lower. Which could be good for

funding and support, but bad for school issues. Then you get into schools

dumbing down the curriculum instead of working around our kids' impairments

to give academic work at their true cognitive level. It's very tricky.

This is a huge issue. I'm glad you've brought it up because it is critical

in securing adult services.

Michele W

Aubrie's mom

July 15, 2007

,

I think your post is very important for people to read and file away for when

they need to be thinking of future options as well as good educational planning.

There may also be some help on the way in terms of the words " mental

retardation " .. The American Association of Mental Retardation has officially

changed it's name to the American Association of Intellectual and Developmental

Disabilities. Lessening the stigma of an " MR " label is the goal. But.. it also

provides (in my opinion) a wider berth for defining needs for kids with other

issues, and most specifically our CHARGE kids. Many, despite how bright and

successful they are/have been, need a good support network to pave the way

whether it is in elementary school, Deaf school, etc. And we see this as more

acutely as they approach the " transition " ages. It is so very hard-- " if my

child has an MR label, he/she gets services that s/he needs, but I don't want

that label, but I want my child to be successfull...... " it is a tremendously

circuitous discussion parents have with themselves!! So....you have paved the

way for so many young people already!!! Your clarity of thought, sensitivity,

and respect will help so many others, as well!

pam

Re: CHARGE: Re: To on independent Living