Wanda, Scroll down for your answers [log in to unmask] wrote:

>Kathy Jo,
>
>I am Wanda, Ryan's mom, in case you don't remember me.  No, I don't remember you --sorry!  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?
>I live in Wisconsin, but, it is close to Iowa.
>
>
>>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.  huh?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? no  Do you have a circle of friends who are non-disabled, and who
>could spend time with you for a once-a-week overnighter? no  Do you have siblings
>nearby?  no 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
>
>Kathy Jo Pink
>
>