I couldn't find anything good on SL on the Web.  I need 24-Hour wake staff.


If I was going to stay home in October, (which, I can't) I needed at least
three people per day, plus a back up for each shift.










Kathy Jo Pink
[log in to unmask]
AOL IM ScreenName:  kjptde

-----Original Message-----
From: St. John's University Cerebral Palsy List
[mailto:[log in to unmask]]On Behalf Of Tamar Raine
Sent: Tuesday, September 14, 2004 2:43 PM
To: [log in to unmask]
Subject: Re: Your summer


in the first place you can wait until they get back from vacation.
secondly, as i told you, the difference between IL and SL is simply the
number of hours of support. for instance at my agency IL is about 5-7 hours
a week, so obviously, more than that is SL. Some people have a paid
roommate for the night time, others just have 4 shifts every day and the
night staff sleeps on a spare bed. I do think you might find SL by looking
on the web for Wisconsin. (supported living is different than assisted
living, which is for senior citizens).

Whoever wrote that your staff has the right to be safe from physical harm
is absolutely correct.

in October there is a Supported Living conference in Sacramento Calif. I
will see if there is info i can get for you.

why do your parents think you need to train ten people?

Mag

Tamar Mag Raine
[log in to unmask]
IM: tamarmag48
Oakland Mayor's Commission on People with disabilities


> [Original Message]
> From: Kathy Pink <[log in to unmask]>
> To: <[log in to unmask]>
> Date: 9/14/2004 10:15:22 AM
> Subject: Re: Your summer
>
> Mag, I don't know if there are any Supported Living Organizations in my
area
> or not.  Should I do a Web Search ?  What's the difference between
> Independent Living and Supported Living?  My parents say it is too close
to
> their vacation to hire and train ten people.  (4 weeks)
>
>
>
> There are three people that I wrote about yesterday to you as far as
> Cornerstone goes.  I only complained about one.
>
>
>
> Yesterday, I met with my county nurse.  (We meet every two months.)  She
was
> all for Independent Living.  (There are two businesses in my town that
> provide caseworkers.)  The County Nurse told me that the business that I
get
> my caseworker from doesn't support independent living where as the other
one
> does.  I used to to get my caseworker from the other agency , I don't know
> why I was switched.  My parents were complete opposite yesterday.  As they
> were talking about my own place down the road.  They talked about how
> expensive it would be.
>
>
>
> Kathy
>
> Kathy Jo Pink
> [log in to unmask]
> AOL IM ScreenName:  kjptde
>
>
>
>
>
>
>
>
>
>
>
> -----Original Message-----
> From: St. John's University Cerebral Palsy List
> [mailto:[log in to unmask]]On Behalf Of Tamar Raine
> Sent: Monday, September 13, 2004 7:35 PM
> To: [log in to unmask]
> Subject: Re: Your summer
>
>
> Kathy Jo, are there any supported living organizations in your area? That
> is what I, and Gary have. We get Supported Living services because we need
> more hours of help than somebody who is an independent Living client.
your
> dept of developmental services may know of an agency and then they could
> help you move out into your own place. it sounds like your parents are
> being passive aggressive -- in that they offer you the basement to live
in,
> but then they say they don't want anybody in their house while they're
> gone.
>
> If this person at cornerstone is doing those things, they need to move
that
> person out! have you complained?
>
>
>
> Tamar Mag Raine
> [log in to unmask]
> IM: tamarmag48
> Oakland Mayor's Commission on People with disabilities
>
>
> > [Original Message]
> > From: kat <[log in to unmask]>
> > To: <[log in to unmask]>
> > Date: 9/13/2004 3:08:46 PM
> > Subject: Re: Your summer
> >
> > If they are conditions you can't live with - and they do sound pretty
> > bad indeed - you should have other choices.  Having said that, I'm
> > afraid that most residental programs have problems such as those you
> > describe because the care facilities are normally woefully
> > understaffed.  However even for that situation, you should feel
> > empowered to complain if you're treated in such a manner by another
> > resident or staff member.  No one should need to put up with sexual
> > abuse.
> >
> > I'd advise you to document each incidence so you have proof of such
> > things.  Log them in your laptop, etc. with dates, names and places.
> >
> > Kat
> >
> > On Mon, 2004-09-13 at 13:55, Kathy Pink wrote:
> >
> > > They propose I go to Cornerstone when they are in Branson.  (Yes, it
is
> > > Branson, MS that I'm talking about.)  No one in my county gets as much
> money
> > > as I do.  I know that is wrong because I know of other people that can
> have
> > > 24-Hour Care that are in my county, bit, they are all elderly.
> > >
> > >
> > >
> > > Some of the reasons that I don't like Cornerstone is because what the
> > > permanent clients say / do.  This one particular client says "Doctors
> > > cripple people" and then without my or anybody's permission got in my
> power
> > > chair and took off.  When I went to my bedroom for personal time (I
had
> my
> > > own single bedroom.) I shut the door.  This same client came in.  The
> same
> > > client salted my food without asking or getting my permission .  This
> same
> > > client has accused other people for taking her personnel belongings
> .Another
> > > client has asked me if I would go to bed because him and if I would
love
> > > him. There is another client that said or did something, but, I don't
> > > remember what.
> > >
> > >
> > >
> > > This weekend, I wrote a letter to my case manager asking for a
different
> > > respite place .  it will probably be a nursing home or a home for the
> > > Mentally Retarded.
> > >
> > >
> > >
> > > Kathy Jo
> > >
> > > Kathy Jo Pink
> > > [log in to unmask]
> > > AOL IM ScreenName:  kjptde
> > >
> > > -----Original Message-----
> > > From: St. John's University Cerebral Palsy List
> > > [mailto:[log in to unmask]]On Behalf Of kat
> > > Sent: Sunday, September 12, 2004 1:59 PM
> > > To: [log in to unmask]
> > > Subject: Re: Your summer
> > >
> > >
> > > So what do they propose you do while they're in Branson?  (I assume
> > > you're talking about Branson, MS).  As for not being able to afford
> > > 24-hour care, I think the state has to help you get that if that is
what
> > > they think you need.
> > >
> > > You've said you don't like Cornerstone.  What exactly don't you like
> > > about Cornerstone?  You know, no matter where you go or what you do,
> > > there will be rules to follow, things you'll have to do even though
you
> > > don't like them.  I live by myself, and I don't particularly like
> > > getting up early but I do it.  If I don't, I don't get to work on time
> > > and I'd get fired.
> > >
> > > There are trade-offs in any path in life.  It's just a matter of
finding
> > > those you can live with.   Now I'll get off my soapbox! :p
> > >
> > > Kat
> > >
> > > On Sun, 2004-09-12 at 14:05, Kathy Pink wrote:
> > >
> > > > It isn't only my parents that say I can't live alone.  I have a
> history of
> > > > hurting myself and others.  My county social worker says I need
> 24-Hour
> > > > Care.  I met with The Independent Living Specialist , my social
> worker,
> > > and
> > > > my parents Thursday.  My parents and my social worker were mad with
me
> > > > because I contacted the Center Of Independent Living.  No two CP
> Cases are
> > > > alike.  I can't afford 24-Hour Care.
> > > >
> > > >
> > > >
> > > > My parents are going to Branson in October and they said I can't
stay
> here
> > > > because it is their house.  People that worked here have stolen,
some
> > > people
> > > > have forgotten , not showed, or they were three hours late.
> > > >
> > > >
> > > > Kathy Jo
> > > > Kathy Jo Pink
> > > > [log in to unmask]
> > > > AOL IM ScreenName:  kjptde
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > -----Original Message-----
> > > > From: St. John's University Cerebral Palsy List
> > > > [mailto:[log in to unmask]]On Behalf Of Kathy
> > > > Sent: Monday, September 06, 2004 8:14 PM
> > > > To: [log in to unmask]
> > > > Subject: Re: Your summer
> > > >
> > > >
> > > > He's wrong.  There's assistive technology to help you with such
> things,
> > > and
> > > > if
> > > > not that, aides can help you.  What will you do when your parents
die?
> > > You
> > > > need to start planning ahead and getting ready to be on your own.
> > > >
> > > > Kat
> > > >
> > > > On Monday 06 September 2004 8:34 pm, Kathy Pink wrote:
> > > > > My dad said in order to live independently you have to be able to
> talk,
> > > > > walk, or feed yourself and I can't do any.
> > > > >
> > > > > Kathy Jo Pink
> > > > > [log in to unmask]
> > > > > AOL IM ScreenName:  kjptde
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > -----Original Message-----
> > > > > From: St. John's University Cerebral Palsy List
> > > > > [mailto:[log in to unmask]]On Behalf Of Tamar Raine
> > > > > Sent: Sunday, September 05, 2004 9:51 PM
> > > > > To: [log in to unmask]
> > > > > Subject: Re: Your summer
> > > > >
> > > > >
> > > > > I can get in and out of my wheelchair, and I can feed myself,
> though I
> > > > need
> > > > > somebody to cut my food.  and I talk ok, not great, but i can
> > > communicate.
> > > > > But regardless, each of us is different, and please don't compare
> > > yourself
> > > > > to anybody.
> > > > >
> > > > > Tamar Mag Raine
> > > > > [log in to unmask]
> > > > >
> > > > > The reasonable man adapts himself to the world; the unreasonable
one
> > > > > persists in trying to adapt the world to himself.
> > > > > Therefore, all progress depends on the unreasonable man.
> > > > > -George Bernard Shaw 1856-1950
> > > > >
> > > > > IM: tamarmag48
> > > > > Oakland Mayor's Commission on People with disabilities
> > > > >
> > > > > > [Original Message]
> > > > > > From: Kathy Pink <[log in to unmask]>
> > > > > > To: <[log in to unmask]>
> > > > > > Date: 9/5/2004 12:29:23 PM
> > > > > > Subject: Re: Your summer
> > > > > >
> > > > > > Mag,
> > > > > >
> > > > > > Can you walk, talk, or feed yourself ? Kathy Jo
> > > > > >
> > > > > > Kathy Jo Pink
> > > > > > [log in to unmask]
> > > > > > AOL IM ScreenName:  kjptde
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > > -----Original Message-----
> > > > > > From: St. John's University Cerebral Palsy List
> > > > > > [mailto:[log in to unmask]]On Behalf Of Tamar Raine
> > > > > > Sent: Friday, September 03, 2004 5:15 PM
> > > > > > To: [log in to unmask]
> > > > > > Subject: Re: Your summer
> > > > > >
> > > > > >
> > > > > > Kathy Jo,
> > > > > > You know I have an average of 5 hours of assistance a day.
Others
> need
> > > > >
> > > > > more
> > > > >
> > > > > > assistance and yet they have their own apartments. So, you can
do
> it,
> > > > > > even if they say 24 hour care is too expensive, it is your right
> to
> > > live
> > > > > > where you want to live. The law is called Olmstead, and I know
> that
> > > > > > States are having trouble helping everybody that needs it, but I
> urge
> > > > you
> > > > > > not to give up. it may take a year. but don't give up.  in the
> > > meantime
> > > > > > there are things you can do, like have somebody teach you about
> money.
> > > > > >
> > > > > > Mag