[tri-med] Respite care frustration - getting MR diagnosis

Hi all!
We have been trying to get respite care for Caroline.  It has been the WORST
hassle ever.  We live in a big time rural area and the only place (we have
found) that provides respite is MH/MR.  Well, Caroline isn't officially
diagnosed as MR.  The only way to "officially" give her that dx is by an IQ
test.  And, no one in the area (entire Western PA) will perform an IQ test
on a 2 yo.  I guess you could get a private psychologist to do it, but no
one know a psychologist who will do it on a 2 yo.

Anyway, IF Caroline was T21 or other common trisomy, she would automatically
be MR.  BUT, her trisomy is so rare, she isn't.  Of course, ANYONE can
see she is OBVIOUSLY profoundly MR.  Caroline's doctor wrote a letter to
MH/MR and said she is MR with an IQ of below 50.  MH/MR said that letter
wasn't good enough.  They want to know HOW he came up with that IQ number?
So, the dr is writing a more detailed letter and maybe that will help.
Because her trisomy is SO rare, and we can't automatically give her an MR
dx, and NO ONE will "officially" document her as MR, so we aren't entitled
to respite, when in fact, Caroline needs it desperately!!!!

This is crazy.  Then, I asked my dr if he has EVER heard of anywhere to get
an IQ test.  He said Early Intervention must provide it.  Well, the Early
Intervention director is also the director of MH/MR and he is putting the
ball in our court to get the IQ documentation.  Our dr said he is giving us
the run around and we should speak to his boss because it is HIS
responsibility to get this dx, not US!  Well, this director is also a, sort
of, friend of my husband's.  His kids are on my husband's swim team so it
seems strange that he would be jerking us around.  My husband doubt he is.

Has anyone had to get an IQ documentation and how in the heck did you do
that?  I am ready to take Caroline to the state and plop her down on their
desk and ask them to tell me she is NOT MR.  HA!

I am so frustrated.  I need the help, especially now that it is my husband's
swim season and he is never home.  Taking my 3 kids out and about is a
PAIN.  I need help!

Thanks for listening!!!  Any advice?????

--
Irene
Christina (4), Caroline (2 with partial trisomy 17p) and Kallie (born
6/23/05)
Caroline's site:  http://www.caringbridge.org/visit/carolinesmith

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

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