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In a message dated 11/19/2003 8:55:30 AM Central Standard Time,

joan@... writes:

> They have " alternatives to guardianship " listed and I want

> to know how folks who cannot speak can be protected without taking their

> rights away. The question regarding medicare informatin is a good one. I

> wonder if a Power of Attorney would be enough?

>

You will have to let us know what you find out Joan at the TASH conference.

The above are good questions. Cognitively cannot make such decisions

even if he spoke. Louise

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I am planning to attend TASH this year and this is one of the topics I am

interested in. They have " alternatives to guardianship " listed and I want

to know how folks who cannot speak can be protected without taking their

rights away. The question regarding medicare informatin is a good one. I

wonder if a Power of Attorney would be enough?

Hmmm.

I will make sure to ask these questions!

Joan

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At 10:06 AM 11/19/2003 -0500, you wrote:

>Cognitively cannot make such decisions

>even if he spoke.

This could be true of Andy as well, but TASH seems to have the position

that we still should protect his rights. That's why I find this

interesting. The one thing I have to say for TASH is that they do look out

for those who are more " severely disabled " just as their old name implied.

I'll let you know.

j

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Joan,

You have me thinking more about guardianship. I was looking at the 3-ring

notebook I compiled on guardianship refreshing my mind and other documents on

Rights. Are you talking about going to the TASH conference in IL in December?

I have never attended any of their conferences and know very little about

TASH, and hadn't heard of it until about a year ago. Yesterday I was looking on

their site for the conference and what will be presented.

Below is one question from the Illinois Guardianship and Advocacy Commissions

site <A HREF= " http://gac.state.il.us/ " >http://gac.state.il.us/</A> go to

Guardianship FAQ to see the other Q & A.

Louise

HOW DOES ONE ASSESS THAT A PERSON MAY BE IN NEED OF GUARDIANSHIP?

The fact that a person has a mental disability does not automatically dictate

a need for guardianship. The test for determining the need for guardianship

focuses on the ability of the person to make decisions and to properly

communicate decisions once made. Making incorrect or ill-advised decisions on a

periodic basis is not the test. Rather, it is an inability to engage in the

decision

making in the first place which is important. A practical set of questions

that may be addressed are as follows:

Does the person understand that a particular decision needs to be made?

Does the person understand the options available in any decision?

Does the person understand the consequences of each option?

Is the person able to properly inform appropriate parties once the decision

has been made?

The inability to make sound decisions about where to live, where to work, how

and when to seek medical care or other professional services, how to properly

care for dependents, and how to purchase items like food and clothing is

indication that a person may be in need of some guardianship services.

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Irma:

and Andy are close in age. So the legal issues I'm looking at are

looming your way, too. Things like I'm told I need one more IQ at age 16

for SSI determination and so on. I will try to compile a list.

But if I need one more IQ, I am, once again, going private.

OUr new sped director started work this week. His comment this mornign was:

" It has been the most interesting two days in my entire career in

education! " This from a man who had to go find his first students in barns

and homes to convince parents to send them to school 30 years ago (just to

find they were all not potty trained!). He is learning that all the things

I've said are absolutely true---and more. So nice to have some respected

well-known person validate what I've been telilng NDSS and NDSC for so

long. They ignore my pleas for assistance with a broken system and go other

places they feel are in worse shape....and have strong parent groups. We

need help gettign parent support going! Sheesh. IT's hard to create a good

support group when you're busy surviving.

Anyway.

It's been very refreshing having him here. Hope is a good thing.

j

At 02:46 PM 11/20/2003 +0000, you wrote:

>Thanks Louise and Joan.

>Great not be alone on learning this information.

>

>Irma,15,Ds/ASD

>

>

>

>

>

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In a message dated 11/20/03 3:36:59 AM Central Standard Time,

writes:

>

> I am planning to attend TASH this year and this is one of the topics I am

> interested in. They have " alternatives to guardianship " listed and I want

> to know how folks who cannot speak can be protected without taking their

> rights away. The question regarding medicare informatin is a good one. I

> wonder if a Power of Attorney would be enough?

>

> Hmmm.

>

> I will make sure to ask these questions!

>

> Joan

>

Having worked in residential care with individuals with developemental

disabilities I get nervous about having anything but a guardianship for those of

our

children who are definitely incapable of stating their wishes (except through

their behavior). Anything that the child signs to give someone authority can

be undone by someone else who gets them to sign passing on that authority.

Here in Wisconsin there is such a thing as partial guardianship which I have

seen used effectively in several situations where the person was capable of

making some decisions but not financial or medical.

I think I have just seen too much and heard to much.

Karyn

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At 04:54 PM 11/20/2003 -0500, you wrote:

>I think I have just seen too much and heard to much.

Actually, those are teh concerns I plan to raise. TASH is also the group

that will expose groups that are harming people and have great disdain for

institutions. So. How do we protect and respect? It's a fine line. One I

would personally err on the side of over-control before taking the " dignity

of risk " argument as valid for my own son. He can take risks with

protection, too.

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