RE: charge adults and independance

[Guest guest]

Ellen that is great advice and so very true. I think we get so caught up in

what's happening right now that we don't fully plan for the future. Thanks

for the very personal reminder. Love you...

>

> hey all charge fams i want to send a little idea out to you wonderful

> parents i know its scary but its so real well what got me thinking of

> this again was that at my program we have disabled people none of them

> charge im the only charger well one of the girls two years older than

> me lived in a nursing home and died and i believe that all the parents

> should think do we want this to happen to our kids and try act on it

> now while there is time coz one day you never know what can happen its

> best to start planning now ive seen martha talk botu her heart probs a

> few weeks ago i know of other people out here non chargers my friends

> who cant walk talk is this whats in our futre the life that that

> person at my program had a life in a nursing home with the elderly i

> know all of us that r in that program fear for oruselves and oru

> friends and my message to you all right now is this plan your childs

> futrue write to peopel to ask for places for younger people write and

> then some more we all have a right to what we need and we do not need

> to be put in with elderly people its a scary reality we all have to

> face one day maybe u r all thinking bout it i dotn know but i just

> want to remind you that its not all school and medical needs its ther

> futre and it scares me and im sure it scares all of you i know

> peophantelle live independantly i could to except im in a wheelchair

> and stuff well my last word is plan plan plan hugs ellen from aus

>

> --

> stand up and speak up!!!!!!! and dont let the world hold you back just go

> for it

>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

Ellen-

This is an important reminder for all of us. Regardless of how " well " our

kids are doing or what country we live in, all of us need to make good

future plans to ensure that our child's future is secure. We have started a

Special Needs Trust for Aubrie but never got it finalized. It's been years

on the shelf. Thank you for reminding me how important it is that we get

that done. It's not just getting the financial part in order, but also

figuring out who will be the best caretaker/guardian. Being her parent

takes a lot of energy. I don't know which relative or friend I could

entrust with that. Her big brother is only 15. It will be years before

he's in a place to take over her care should it come to that. We're simply

stuck in trying to make the decisions.

Again - thanks for your reminder.

Michele W

[Guest guest]

Ellen,

I'm trying madly but slowly (as my damn physician orders now mandate)

to get things done - oh, it's good to feel able to do things --- but I must

address your " right on " post.

Even before my congestive heart failure, Andy and I had: 1) when

was turning 18, gotten me guardianship (we're currently waiting to hear

from our lawyer about adding Andy to the document now that we see that

either one of us can be hit); 2) set up future guardianship (mainly

financial, i.e., NOT personal) for her sister, with a clause putting a dear

niece in her place when E. is unavailable (since has bounced

from Africa to the S. Pacific and Central America for work and study). Note

that my niece lives far from us and hasn't seen for awhile. However,

she adores our little family; moreover, she has great spunk and enough

understanding of K's needs so that we're confident that she'll fight like the

devil if that's needed; while the above things were not cost-free to set up,

the future financial trust won't cost us more than @ $100 prior to our

deaths. Without it, the amount of money could have to help with her

social security and supplemental aid for the blind would be EXTREMELY

limited. As we have things set now, even 's travel to see K., the

hiring of specialists as needed, and many other rather trite things are set

in place legally.

I know how I hated going to court to set this into motion (Andy couldn't go

with me, and every-now-and-then I'm quite the coward), and I understand

the reaction of wanting to avoid taking such action. I can only stress to

other parents that it's essential that it be done before they actually have to

face it (that particular worry disappears), and your world in general will be

a tad easier.

Note: we, too bypassed various closer relatives. We also refused to let

the whole affair drop on . A good lawyer can be quite creative!

Find a specialist in - I guess it's probate law though Andy's brother is a

probate judge and didn't know much more than half of the current

regulations that our lawyer did (he deals with this sort of thing regularly).

If anyone wants particular information, email me privately

(lewcap@...), and I'll have Andy reply.

I must close by saying, just do this! Martha