Kathy Jo,

I am Wanda, Ryan's mom, in case you don't remember me.  Your post here has
made me think.  I hope you don't mind if I answer some of what you wrote.  I
have some ideas for you to think about, and some questions.  I will cut and paste
in some of your letter for coherency.

>I am a thirty -four year old born with Cerebral Palsy and because of this
>I need help eating, going to the bathroom, brushing my teeth, taking a
>bath (or a shower), washing my hair, shaving , cutting my nails,
>dressing, brushing my hair, etc. Basically I need total care much like
>an infant.

So does my son, and he may always.  You know what?  These are just "your
needs."  They are not you.  I hope there is no one in your world who makes you
feel that your needs define you.  They do not.
>
>I left C-PALSY because I went to an Easter Seals Camp in June. I will be
>leaving the list in a month again to go to Camp Courageous of Iowa.

Do you live in Iowa?  Where exactly do you live?

>
>Are JerkyMovements a characteristic of all cases of Cerebral Palsy?

You should ask your neurologist if your movements are part of another
condition or if they are just the way you move.
>
>I am stillfighting with Independent Living. Last November, I agreed to
>go to Cornerstone one day a week (just for Dayservice). That was a BIG
>mistake . I said yes because My Mom wanted it and wanted a break and
>Cornerstone was building on...well, about a month ago, when I wanted an
>assessment for somewhere else, my caseworker said okay and stop going to
>Cornerstone. My parents said (after my caseworker left) if you stop
>going to Cornerstone , once a week, come the first of the next year, you
>will be kicked out of the house and be at Cornerstone permanently and
>lose your guardianship.

I understand your mother wanting a break.  I do not understand your mother
wanting you to go someplace that you do not like so she can have a break.  I
also do not understand you relying on a caseworker to set up an option for you.
The caseworker will only set up situations that involve somewhat "dependent"
options.  Here is what I would like for you to think about.
Do you have a family friend or relative who could let you "hang out" with
them once a week?  Now, by "hang out", you and I know that means they have to be
trained (by you and your mother!) to help meet your needs.  Is there someone
in your church?  Do you have a circle of friends who are non-disabled, and who
could spend time with you for a once-a-week overnighter?  Do you have siblings
nearby?  Think outside the box.  I'm sure you are a hoot to hang out with, so
what if they have to kick in a bit to help you out with life!

I am upset with your parents for threatening you with placing you at
Cornerstone permanently and taking over your guardianship.  However, I can hear that
they are really trying to say to you that it is very important for your mother
to have a break once a week.  I can also hear you saying that you really need
to be "on your own", as much as you can be, for some time as well.  So think
about a way to make it happen.  Maybe you and your parents could brainstorm
together.

I think it is a shame that they only offer personal care service in one area,
and that there are not many options for you where you live.  But remember
that caseworkers are only going to offer you options based on what your
government or insurance funds will pay for.  You are not totally dependent on Medicaid
and what Medicaid is willing to pay for (or whatever your funding source might
be).  Locate your own other options!

Don't let some beaurocrat dictate what you can choose from!

I like your letter to your caseworker, and you ask good questions.  You are
being very reasonable with them (her?).  I hope she(?) answers your questions
about how things are paid.  Think about my suggestions, and please let me know
how this goes.  I would like to know if things really could go the way I hope
for someone in the real world.

be well, kathyjopink
wanda