[tri-med] Re: To Be A Rabble Rouser or Not?

>Every state is supposed to have a developmental disabilities 
>agency to help meet the needs of the developmentally disabled. 
>At this time in CA, there is not an income criteria (ion) but 
>with the state of our budget, they are making noises. But even 
>so, some help is better than none. 

Let's see if I remember this right, it's Federally mandated,
State funded, and administered by the individual County or in
our case a couple of them banded together.  And since not all
Counties are created equal (not equal funding available) just 
what and how much they offer to clients varies from County to 
County, even within a State.  That's one reason they don't
routinely tell parents what alls available to their kids. 

Philina became a client as an infant, but I had to learn about
respite years later from the mom of a boy with Down's, who's 
son had the same Regional Center worker as Philina.  Even then,
she made me beg for it.  Told me, "it wasn't intended for people
like you.  You should be able to pay someone to watch your child." 
Only reason I got any hours from her was because I retorted with,
"Maybe I could, but I'd have to be able to find someone qualified
and willing to watch her."  She granted us 12 hrs a month, and made
me sign a contract that said I'd reimburse them for any hours I 
used.  I figured at least then in a pinch I'd be able to come up
with a sitter.  But first thing the Sitter Service office worker 
did was "round file" my contract to reimburse.  As she put it, 
"She's got to be kidding!  Nobody pays us back for these hours, 
not even families from La Jolla, so I'm sure not making someone who 
lives in East San Diego pay for them." 

I was wrong though of course, having the hours doesn't guarantee 
they'll find you a sitter, or that the one they do really shows up 
when you need them.  In fact, I could count on if I made specific 
plans then I WOULDN'T have a sitter...but if I didn't, they'd show 
up like clock work.  Happened that way every time, and I finally 
just gave up even trying and stuck my head in the sand for several
years.

Then they started offering the self managed option where you either
find your own sitter or use Easter Seals Camps, and we started over
from scratch again.  So this last year has made the 3rd time I've 
fought this respite care battle, and it has gotten easier each time.
But I'm just getting too old for this crud.

Fawna, mom to Philina 21yrs (PT6p & Moya Moya Syndrome)
http://home.mindspring.com/~fawna33/

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: