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Work and life plans

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We have as guardians for Elie two of our four children - both in their 30's

now. They understand that we do not expect Elie to live with them - they

would all be miserable!! But they want and expect to oversee where ever he

is living. And when we move to GA that will be the major push - to get Elie

located in a life sharing situtation that will give us all plenty of time to

get used to the people and idea as we are now in our mid-sixties :( I

expect that it will take about 2-5 years to accomplish this. And to get

Elie situated in a day program of work and rec that he will be both happy

and safe.

Yesterday was Elie's FINAL IEP with the transition planner there to tell us

of the ongoing evals going on. SSeems Elie is willing and able to learn new

work skills in very short order. We are now asking that the rest of the

year he learn how to work work longer than 30-1hr at a time!! After 30

minutes, he tells the work supervisor - " That's enough - all done. See ya

tomorrow " And he is OUT of there! We are going to try paying him each hour

with MCD scrip to see if he will work longer for more money.

He will even work on a production line for 30 minutes. But he much prefers

cleaning or shlepping, to sitting still and working.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To:

>Subject: Re: RWho do we let know???

>Date: Sun, 8 Jan 2006 11:56:56 -0800 (PST)

>

>Getting the info ON Andy is harder than anything else.

>But we do have a great network of people around us. I

>like the idea of keeping info in the car--even with

>the insurance papers (where they would look). They DO

>say to put med lists and such in the fridge--they're

>supposed to look there in case someone is diabetic to

>find insulin. Not that they do.

>

>As for the wills and who you ask to take guardianship,

>better someone who loves your child and is

>ill-equipped than a stranger. Especially if strangers

>are frightening. We had quite a time, but finally

>agreed on a freind. However, we wrote a letter of

>intent for our family. We intend our friend to take on

>the lion's share, but we EXPECT our family to support

>her financially, emotionally, and tangibly. They all

>agreed. My parents would have been a fine choice

>except we now need ot plan for their declining health

>(they're only 70, but...). My Dad was very happy with

>this situaiton. And if *I* die, regardless of Rex, my

>inheritance is split 60-40: Andy's trust: .

>recognizes he's not really getting the short end of

>the stick b/c if Andy has money in his trust, then

>'s life is better. Our will states that when

>is 30, he takes guardianship of Andy. My goal is to

>have a circle of support network so that this is not a

>huge burden for , but definitely something he

>manages so our values and respect for andy remain

>intact.

>

>When asking someone to take this on, have a plan...a

>list of people who are willing to step up and help and

>include that with your will. That way the guardian

>knows they are not all alone. We found that our friend

>was honored, but worried she wouldn't do as good a job

>as I do. I told her I wasn't expecting her to replace

>me, but to be sure Andy is respected and loved. I

>couldn't ask for more than that. That even if she felt

>the need to have him move to a residential facility

>(like Pathfinder Village, for instance), that she

>would watch over that situation and be active in his

>life. She was happy to take it on once I explained my

>own expectations. You aren't asking tha tperson to

>become YOU. You are asking them to keep your child

>healthy, happy, safe, resepcted, and engaged in life.

>

>The other thing to consider is that a trust doesn't

>have to be something that is only used upon your

>demise. All my book royalties have gone into Andy's

>trust (we're horrible savers). By designating it that

>way, we already have a way to keep his income/net

>worth under the $2000 expected by the government, AND

>a way to supplement his life that does not risk his

>SSI or insurance--since Id on't see him being

>competetively employed. If he earns too much, he can

>put it in his trust or spend it, but he isn't FORCED

>to spend it. And the trust can own the home he rents,

>the car his support person drives, etc. A trust is

>something YOU can benefit from while you are

>alive....you can see it in action, know that it works,

>or work out the gliches. And when you hit tough

>times, you can pay for support from it for your

>child--somethng you can't do directly from yoru pocket

>once s/he is 18.

>

>So much to consider.......

>

>Take it one step at a time, but DO make a plan and

>follow through.

>

>j

>

>

>

>__________________________________________

>Yahoo! DSL – Something to write home about.

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>

>

>

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