I just wanted to say thank you to the people who have replied to my question on
lifting.  I will take all things into consideration obviously.  Thank you again.


My flesh and my heart may fail, but God is the strength of my heart and my
portion forever.


[Non-text portions of this message have been removed]

Yes, Josh, the old ways die hard. They're so used to us barely making
it out of childhood that they don't know what to do. Jessica hit the
nail on the head when she said they tend to infantilize us. Of course
the "Jerry's Kids" characterization helps raise money, but it can also
be a burden. I doubt it's conscious, but it's become ingrained in the
culture at MDA.

On 5/2/08, Josh Winheld <winheldsworld@...> wrote:
> Hi Jessica,
>
> That's a GREAT idea!  I attended MDA camp until I was 15.  I enjoyed
> it very much, but by then, it was time to move on and look to my
> future.  The kind of program you are suggesting is just what many
> teenagers with DMD need.  My sister, who is not disabled, attended a
> summer-study program at the college to which she eventually
> matriculated and it was an experience that helped her build
> confidence and become independent.  For guys with DMD, becoming
> confident and independent is even more important, in my opinion.
> When I went to college, I commuted from home, but had I participated
> in the kind of program you're suggesting, perhaps I would have
> developed the confidence I needed to live on campus.
>
> At the risk of upsetting anyone, I want to say that while camp is a
> great experience for many of us, there can be many more great
> experiences in our lives.  Many of us are living a lot longer and
> there is so much more that we can do.
>
> I agree that MDA needs to address the needs of this age bracket.
> They seem a lot more interested in addressing the needs of cute
> little kids than the older population (I have become active with PPMD
> because they actually WANT to learn from us and to help us).  But we
> should definitely try to use this -- the age limit change -- as an
> opportunity to create something that even better serves the needs of
> young adults with MD.
>
> Josh
>
> Josh Winheld
> winheldsworld@...
> http://winheldsworld.blogspot.com
>
>
> --- In dmdpioneers@yahoogroups.com, "Jessica Resnick-Ault"
> <jrault@...> wrote:
> >
> > Thanks, Jonathan... I was just thinking, I'm pretty sure that the
> summer
> > Pete was 17, he attended a mainstream summer program at the college
> he later
> > matriculated to. How cool would it be if there was an on-campus
> program that
> > was EXCLUSIVLEY for people with muscular dystrophy? It could be
> geared
> > toward providing that peer-to-peer contact, while also enabling
> rising
> > juniors to figure out how they would tackle the challenges posed by
> college
> > or vocational programs, and perhaps have support (like an upward-
> bound style
> > program) that would provide guidance during the application season..
> >
> >
> >
> >
> > On 5/2/08, jhinek@... <jhinek@...> wrote:
> > >
> > >   On 5/2/08, Jessica Resnick-Ault <jrault@... <jrault%
> 40gmail.com>>
> > > wrote:
> > > > While I, like you, am disappointed in the MDA's failure to
> serve people
> > > in
> > > > this age bracket, and think their reasons for excluding young
> adults are
> > > > LAME, I also think that the organization can, at times,
> infantilize the
> > > > people it serves, and that programming that is more analogous
> to the
> > > > opportunities for able-bodied peers should be pursued as an
> alternative.
> > >
> > > Good point, Jessica. This could be viewed as an opportunity to
> > > advocate for age appropriate summer programs. With everyone's
> > > attention on this, it might be the perfect time. I assume that
> this
> > > new policy has freed up some resources.
> > >
> > > --
> > > Jonathan
> > >
> > >
> >
> >
> >
> > --
> > *************************
> > Jessica Resnick-Ault
> > jrault@...
> > or
> > jra@...
> >
> >
> > [Non-text portions of this message have been removed]
> >
>
>
>
> ------------------------------------
>
> ----------
> DMD Pioneers Mailing List Chat: Sundays @ 3 PM Eastern (12 Pacific)Yahoo!
Groups Links
>
>
>
>


--
Jonathan

Hi Jessica,

That's a GREAT idea!  I attended MDA camp until I was 15.  I enjoyed
it very much, but by then, it was time to move on and look to my
future.  The kind of program you are suggesting is just what many
teenagers with DMD need.  My sister, who is not disabled, attended a
summer-study program at the college to which she eventually
matriculated and it was an experience that helped her build
confidence and become independent.  For guys with DMD, becoming
confident and independent is even more important, in my opinion.
When I went to college, I commuted from home, but had I participated
in the kind of program you're suggesting, perhaps I would have
developed the confidence I needed to live on campus.

At the risk of upsetting anyone, I want to say that while camp is a
great experience for many of us, there can be many more great
experiences in our lives.  Many of us are living a lot longer and
there is so much more that we can do.

I agree that MDA needs to address the needs of this age bracket.
They seem a lot more interested in addressing the needs of cute
little kids than the older population (I have become active with PPMD
because they actually WANT to learn from us and to help us).  But we
should definitely try to use this -- the age limit change -- as an
opportunity to create something that even better serves the needs of
young adults with MD.

Josh

Josh Winheld
winheldsworld@...
http://winheldsworld.blogspot.com


--- In dmdpioneers@yahoogroups.com, "Jessica Resnick-Ault"
<jrault@...> wrote:
>
> Thanks, Jonathan... I was just thinking, I'm pretty sure that the
summer
> Pete was 17, he attended a mainstream summer program at the college
he later
> matriculated to. How cool would it be if there was an on-campus
program that
> was EXCLUSIVLEY for people with muscular dystrophy? It could be
geared
> toward providing that peer-to-peer contact, while also enabling
rising
> juniors to figure out how they would tackle the challenges posed by
college
> or vocational programs, and perhaps have support (like an upward-
bound style
> program) that would provide guidance during the application season..
>
>
>
>
> On 5/2/08, jhinek@... <jhinek@...> wrote:
> >
> >   On 5/2/08, Jessica Resnick-Ault <jrault@... <jrault%
40gmail.com>>
> > wrote:
> > > While I, like you, am disappointed in the MDA's failure to
serve people
> > in
> > > this age bracket, and think their reasons for excluding young
adults are
> > > LAME, I also think that the organization can, at times,
infantilize the
> > > people it serves, and that programming that is more analogous
to the
> > > opportunities for able-bodied peers should be pursued as an
alternative.
> >
> > Good point, Jessica. This could be viewed as an opportunity to
> > advocate for age appropriate summer programs. With everyone's
> > attention on this, it might be the perfect time. I assume that
this
> > new policy has freed up some resources.
> >
> > --
> > Jonathan
> >
> >
>
>
>
> --
> *************************
> Jessica Resnick-Ault
> jrault@...
> or
> jra@...
>
>
> [Non-text portions of this message have been removed]
>

I was just talking to the local MDA office healthcare services case aide on the
phone about the change in age limit for summercamp.  Apparently, corporate
explained it to them before the letters went out.  She said she basically agrees
with the policy.  One reason was the older campers did not seem to be interested
in the activities that were geared for younger kids.  Another reason was legal
liability (you know those freaking lawyers again) and the requirement to do a
background check on campers over 18.  She didn't mention money but you know that
had something to do with it.

We would always have a blast at camp no matter what age.  (Maybe you younger
people don't know how to have fun without a video game... :-) ) I think they
would schedule different age groups, girls/boys together at the different
activities... arts and crafts would make something like nametags and unit flags
and the usual kids projects.

I don't think the fun factor has anything to do with it.  It comes down to money
and legal problems that cost money.

Also, don't blame your local people at MDA.  They are doing their best in most
cases and really want to help people.  But, they cannot risk saying anything
against corporate for fear of losing their jobs.

Anyway, I wouldn't give up yet.

Tom Mecke
   ----- Original Message -----
   From: Jason Gallagher
   To: dmdpioneers@yahoogroups.com
   Sent: Friday, May 02, 2008 9:06 AM
   Subject: Re: [DMD Pioneers] Re: Camp Age Limit Change!


   First - Note to all who have commented on this subject - THANK YOU! I plan
   to respond to everyone ASAP.

   Tom -

   It is interesting to read about your experience. I had heard from one
   counselor at our camp who has a mild form of MD and has been going since a
   kid about when they enforced the 21 y/o limit, and that before that it was
   nearly any age. I can only imagine the uproar it caused, and the people who
   got hurt. It's interesting that around 20 years later (somewhere around
   2004) the 21 y/o limit was being challenged again, this time in court, to
   challenge the discrimination of not letting someone with MD continue as a
   camper after 21. It was also an opportunity for MDA to crack down on
   renegade camps that let some volutunteers who need physical assistance
   themselves continue as volunteers. It's interesting because, it turns out
   that some people were upset at me from this one particular camp, because I
   had caught word they were letting former campers be volunteers after age 21,
   and I was being told NO, so I wrote a letter to corporate thinking that it
   would make sense to point out how well it works for other camps - that
   backfired and MDA instead pulled out their whip and some blamed me for
   pointing it out (even though it would have got noticed eventually anyway).
   Plus, I had no mal-intent, I simply wanted to keep contributing to camp in
   the same ways the people from that camp were. I also heard the camp
   director of that camp was beloved and got the quick boot, creating really
   bad feelings towards MDA for many campers and counselors. And now we see
   ourself full-swing, and it is sad that MDA is more worried about $$$s and
   liability instead of trying to nurture the spirit of camp that was created
   so many years ago and continues today.

   And I agree, for the older guys to serve as role models to the young ones,
   is a great function of camp when it happens. MDA should totally encourage
   this type of model for giving the younger ones more hope by showing the
   accomplishments of the older kids, and adults. I know I tried to do this as
   much as I could when I was at camp (little kids loved me at camp).
   Unfortunately, the truth is often-times the older kids only serve as a scare
   tactic for the youger ones, serving only as a reminder of "how you will end
   up." I think their is a fundamental mentality at MDA that just doesn't "get
   it" and there needs to be a fundamental paradigm shift in thinking.

   I am 100% behind you on using he power of the internet to gather people
   together to challenge this and change the thinking at MDA. I hope that
   together we can start a movement! I am not sure how, but Tom if you could
   e-mail me privately, I think it would be great to brainstorm through e-mail
   and IM. Please, all others that are interested, please contact me too. I'm
   in the process of trying to gather names of people interested challenging
   the ruling and to show, as Tom said, MDA the "value of the older campers."

   I'm thinking some kind of internet "SAVE CAMP" campaign. With the internet
   there are so many ways we could spread the word quickly.

   Thanks Tom for sharing,
   Jason

   On Thu, May 1, 2008 at 10:21 PM, tjm47 <tjm47@...> wrote:

   > We fought this before when they enforce the 21 year old limit. I think
   > it was 1984. It villainized our regional director for many people until the
   > guy retired nearly 20 years later....
   >
   > I personally went to camp until I was 23, serving as a counselor
   > (unofficially) the last two years. I actually took my iron lung which I was
   > sleeping in at night at the time. Anyway, I think having the older guys that
   > were in college at camp was an inspiration to the younger kids coming up.
   > Maybe that's not in the official camp purpose statement but I think it is a
   > huge thing for the younger kids to see what the older campers are able to
   > do.
   >
   > We need to use the new connectedness of everyone these days with the
   > Internet to try to make a change in this policy. Since they already won an
   > ADA lawsuit, we will have to make MDA see the value of the older campers. If
   > they can't see it our way, maybe they need to be made the villain to the
   > public to get them to see our way.
   >
   > Tom Mecke
   >
   >
   > ----- Original Message -----
   > From: Jessica Resnick-Ault
   > To: dmdpioneers@yahoogroups.com <dmdpioneers%40yahoogroups.com>
   > Sent: Thursday, May 01, 2008 7:25 PM
   > Subject: Re: [DMD Pioneers] Re: Camp Age Limit Change!
   >
   > First of all, I do think that, if they change it, the change should be
   > gradual + not sprung upon people.
   > Second (and here's where I get controversial): I think it's okay to
   > cut off at 17 under 3 conditions:
   > 1. People with all forms of MD who are 18+ are allowed to be
   > counselors or volunteers in an active + engaged way.
   > 2. People who are not cognitively able to be counselors be allowed to
   > be campers until age 21 (as public schools work).
   > 3. The move is part of an effort to free up $ to provide the summer
   > experience to a larger number of kids.
   >
   > That's just one more perspective, though. To me, a system like that
   > would make MDA camp more similar to average summercamp, and enable
   > young adults with muscular dystrophy have the same leadership
   > opportunities as their peers.
   > Frankly, colleges want to hear that you've volunteered or counseled,
   > rather than being a camper, in today's competitive world.
   >
   > On 5/1/08, Jason Gallagher
<elevatorsout@...<elevatorsout%40gmail.com>>
   > wrote:
   > > Follow-up -
   > >
   > > I may have been wrong about the part where they don't get to go back
   > this
   > > year. According to this 21 y/o lady's blog -
   > >
   >
http://blog.myspace.com/index.cfm?fuseaction=blog.view&friendID=36881558&blogID=\
385811265
   > > It doesn't take effect until 2009, which would mean 17-21 y/o would get
   > to
   > > go back this year.
   > >
   > > But still...
   > >
   > > I'm going to keep investigating.
   > >
   > > ---Jason
   > >
   > >
   > > On Thu, May 1, 2008 at 5:54 PM, Jason Gallagher
<elevatorsout@...<elevatorsout%40gmail.com>
   > >
   > > wrote:
   > >
   > > > Hello Fellow DMD'ers -
   > > >
   > > > For all of you who went to camp (and had the best time of your life) -
   > > > have you heard that the max age limit has been changed to 17 (from
   > 21)???
   > > I
   > > > just got an online message from a younger guy who was 17 at camp last
   > > year,
   > > > and he got a letter just the other day saying he can no longer go to
   > camp.
   > > > No warning, no grandfathering, nothing - just, you're too old. This is
   > > > simply ridiculous, in my opinion. It's bad enough they changed the age
   > (I
   > > > disagree with completely), but to not give the 17 y/o's one last
   > hurrah or
   > > > to have let them know last year so they could say their goodbye's just
   > > adds
   > > > insult to injury!
   > > >
   > > > I know you can tell I'm upset (I am) - so I'm trying to stay calm,
   > since I
   > > > don't know all the details. But you can bet I am going to find them!
   > Has
   > > > anyone else heard about this???
   > > >
   > > > ---Jason
   > > >
   > > >
   > > > --
   > > > You may disappointed if you fail, but you are doomed if you don't try.
   > > > Beverly Sills
   > >
   > >
   > >
   > >
   > > --
   > > You may disappointed if you fail, but you are doomed if you don't try.
   > > Beverly Sills
   > >
   > >
   > > [Non-text portions of this message have been removed]
   > >
   > >
   >
   > --
   > *************************
   > Jessica Resnick-Ault
   > jrault@... <jrault%40gmail.com>
   > or
   > jra@... <jra%40alumni.brown.edu>
   >
   > ----------------------------------------------------------
   >
   > No virus found in this incoming message.
   > Checked by AVG.
   > Version: 7.5.524 / Virus Database: 269.23.7/1409 - Release Date: 5/1/2008
   > 8:39 AM
   >
   > [Non-text portions of this message have been removed]
   >
   >
   >

   --
   You may disappointed if you fail, but you are doomed if you don't try.
   Beverly Sills

   [Non-text portions of this message have been removed]






------------------------------------------------------------------------------


   No virus found in this incoming message.
   Checked by AVG.
   Version: 7.5.524 / Virus Database: 269.23.7/1411 - Release Date: 5/2/2008 8:02
AM


[Non-text portions of this message have been removed]

Sounds like bullshit to me.

On Thu, May 1, 2008 at 11:47 PM, sherri Waala <putupyerfeet@...>
wrote:

>   Yes, we got the letter earlier this week. Here's what
> it says; and I quote: "MDA remains committed to
> offering a top-qualiy camping program; however,
> dramatic shifts in insurance industry and risk
> management practices now require that the Association
> return to it's fundamental program objective of
> offering summer camp opportunities for children
> (underline children). The inescapable reality is
> that, as camping and risk management standards change,
> so must the Association's policies. Therefore,
> effective with the summer 2009 camp season,
> participation in MDA camp will be limited to those
> agest 6 through 17. This age range is consistent with
> guidelines established by the American Camp
> Association for child-focused programs."
>
> They go on to say that those 18-21 will be invited to
> attend camp this year and that MDA staff is working
> hard to make a special effort for those "graduating"
> from the program in 2008.
>
> This is my son's last year for camp as he is now 17.
> The camp week is looked forward to by him as the
> highlight of his year. And now, this is his last
> year.
>
> So, that was a real disappointment. It's also the
> week that I get respite from being his full-time
> care-giver.
>
> Sherri
>
> --- Jason Gallagher <elevatorsout@... <elevatorsout%40gmail.com>>
> wrote:
>
> > Hello Fellow DMD'ers -
> >
> > For all of you who went to camp (and had the best
> > time of your life) - have
> > you heard that the max age limit has been changed to
> > 17 (from 21)??? I just
> > got an online message from a younger guy who was 17
> > at camp last year, and
> > he got a letter just the other day saying he can no
> > longer go to camp. No
> > warning, no grandfathering, nothing - just, you're
> > too old. This is simply
> > ridiculous, in my opinion. It's bad enough they
> > changed the age (I disagree
> > with completely), but to not give the 17 y/o's one
> > last hurrah or to have
> > let them know last year so they could say their
> > goodbye's just adds insult
> > to injury!
> >
> > I know you can tell I'm upset (I am) - so I'm trying
> > to stay calm, since I
> > don't know all the details. But you can bet I am
> > going to find them! Has
> > anyone else heard about this???
> >
> > ---Jason
> >
> >
> > --
> > You may disappointed if you fail, but you are doomed
> > if you don't try.
> > Beverly Sills
> >
> >
> > [Non-text portions of this message have been
> > removed]
> >
> >
>
> __________________________________________________________
> Be a better friend, newshound, and
> know-it-all with Yahoo! Mobile. Try it now.
> http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ
>
>


[Non-text portions of this message have been removed]

Adele,

That is exactly what they have done-kids can go to camp through age 17.  When
they are adults at 18, they can't.  I was happy my kids could go to camp through
age 21, although my older son had moved on to Teen Leadership one year and was
on study abroad in Australia another.  My younger son went through age 21, but
the last few year were mostly to get together with the older guys, play video
games, watch movies, swim-still some good experiences for him once a year.   I
think some of the guys on here have organized a "camp" for older adult DMDers.

Andrea
From: dmdpioneers@yahoogroups.com [mailto:dmdpioneers@yahoogroups.com] On Behalf
Of Adele
Sent: Friday, May 02, 2008 7:38 AM
To: dmdpioneers@yahoogroups.com
Subject: RE: [DMD Pioneers] Camp Age Limit Change!


I knew for a number of years, MDA has been trying to lower the age, but I'm
shocked that no notice had been given about the change. I'm very upset
also. My Jason. Now 23, it doesn't matter, but like you said, all of those
other 17 years olds, that thought they had a few more years at camp. But
then, if they were going to change, why not at 18 when they legally become
adults?

Adele

_____

From: dmdpioneers@yahoogroups.com<mailto:dmdpioneers%40yahoogroups.com>
[mailto:dmdpioneers@yahoogroups.com<mailto:dmdpioneers%40yahoogroups.com>] On
Behalf Of Jason Gallagher
Sent: Thursday, May 01, 2008 6:55 PM
To: dmdpioneers@yahoogroups.com<mailto:dmdpioneers%40yahoogroups.com>
Subject: [DMD Pioneers] Camp Age Limit Change!

Hello Fellow DMD'ers -

For all of you who went to camp (and had the best time of your life) - have
you heard that the max age limit has been changed to 17 (from 21)??? I just
got an online message from a younger guy who was 17 at camp last year, and
he got a letter just the other day saying he can no longer go to camp. No
warning, no grandfathering, nothing - just, you're too old. This is simply
ridiculous, in my opinion. It's bad enough they changed the age (I disagree
with completely), but to not give the 17 y/o's one last hurrah or to have
let them know last year so they could say their goodbye's just adds insult
to injury!

I know you can tell I'm upset (I am) - so I'm trying to stay calm, since I
don't know all the details. But you can bet I am going to find them! Has
anyone else heard about this???

---Jason

--
You may disappointed if you fail, but you are doomed if you don't try.
Beverly Sills

[Non-text portions of this message have been removed]

_____

I am using the free version of SPAMfighter for private users.
It has removed 362 spam emails to date.
Paying users do not have this message in their emails.
Try SPAMfighter <http://www.spamfighter.com/len> for free now!

[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]

Our backpage tends to have the same posts as craigslist, but that might vary
from city to city. Another place we look for caregivers is GreenSheet, a
local classified ad. paper. That costs $, so we tend to go through the free
resources online first (craigslist; backpage, etc.)
-Jessica


On 5/2/08, Adele <jasona65@...> wrote:
>
>   I've never heard of that. Thanks.
>
> Adele
>
> _____
>
> From: dmdpioneers@yahoogroups.com <dmdpioneers%40yahoogroups.com> [mailto:
> dmdpioneers@yahoogroups.com <dmdpioneers%40yahoogroups.com>] On
> Behalf Of Jason Gallagher
> Sent: Friday, May 02, 2008 10:13 AM
> To: dmdpioneers@yahoogroups.com <dmdpioneers%40yahoogroups.com>
> Subject: Re: [DMD Pioneers] Care giver co-op
>
> Adele,
>
> That sounds like a really good idea. The flyer makes sense and I think it
> will connect with the audience you are trying to enlist. I agree with
> Jessica, try spreading the word in as many ways as possible on the
> internet
> and otherwise. In addition to Jessica's suggestions, also try
> baltimore.backpage.com - I have found the KC backpage to be a great free
> classified to advertise for PAs for myself.
>
> ---Jason
>
> On Fri, May 2, 2008 at 8:54 AM, Adele <jasona65@verizon.
> <mailto:jasona65%40verizon.net <jasona65%2540verizon.net>> net> wrote:
>
> > Here is our official flyer we've made up to go to our local MDA office
> > for
> > distribution to all of the local DMD/BMD families here.
> >
> > Care Givers Co-op
> >
> > Sharing the Caring
> >
> > Are you the parent of a young person with a Neuro-Muscular condition who
> > finds it hard, getting quality care for you child? Would you like to
> have
> > a
> > place to drop your young person off for a spa day? We have a place for
> > you!
> >
> > As parents and caregivers of young adults with Duchenne MD, we quite
> often
> > find ourselves as much a prisoner of their disease as they are.
> >
> > I'm Vickie Beard; I have two sons ages 26 and 28 with DMD. This Co-op
> has
> > been an ongoing discussion between myself and my friend, Adele
> Abramowitz,
> > whose son, Jason(23) also has DMD. My house is completely accessible and
> > well equipped to care for as many as 2 or more additional young people
> for
> > overnight care and extended vacation care.
> >
> > We are interested in hearing from other families in the area, to set up
> a
> > meeting to discuss the implementation of a co-op for sharing care.
> >
> > Should you be interested in the co-op but find you are unable to trade
> for
> > care a fee for service arrangement can be discussed at length.
> >
> > Are you interested? If so, please contact either Adele or my self at:
> >
> > Vickie <mailto:Vickie@... <Vickie%40aol.com> <mailto:
> Vickie%40aol.com <Vickie%2540aol.com>>
> <Vickie%40aol.com>> Vickie@... <Vickie%40aol.com> <mailto:
> Vickie%40aol.com <Vickie%2540aol.com>>
> <Vickie%40aol.com>Adele
> > <mailto:Jasona65@verizon.
<mailto:Jasona65%40verizon.net<Jasona65%2540verizon.net>>
> net
> <Jasona65%40verizon.net>>
> > Jasona65@verizon. <mailto:Jasona65%40verizon.net<Jasona65%2540verizon.net>>
> net
> <Jasona65%40verizon.net>
> >
> > 301-502-1657 mobile 443-520-1331 mobile
> >
> > 301-262-9515 home 410-964-1223 home
> >
> > _____
> >
> > I am using the free version of SPAMfighter for private users.
> > It has removed 362 spam emails to date.
> > Paying users do not have this message in their emails.
> > Try SPAMfighter <http://www.spamfigh <http://www.spamfighter.com/len>
> ter.com/len> for free now!
> >
> > [Non-text portions of this message have been removed]
> >
> >
> >
>
> --
> You may disappointed if you fail, but you are doomed if you don't try.
> Beverly Sills
>
> [Non-text portions of this message have been removed]
>
> _____
>
> I am using the free version of SPAMfighter for private users.
> It has removed 362 spam emails to date.
> Paying users do not have this message in their emails.
> Try SPAMfighter <http://www.spamfighter.com/len> for free now!
>
> [Non-text portions of this message have been removed]
>
>
>



--
*************************
Jessica Resnick-Ault
jrault@...
or
jra@...


[Non-text portions of this message have been removed]

I've never heard of that.  Thanks.



Adele



   _____

From: dmdpioneers@yahoogroups.com [mailto:dmdpioneers@yahoogroups.com] On
Behalf Of Jason Gallagher
Sent: Friday, May 02, 2008 10:13 AM
To: dmdpioneers@yahoogroups.com
Subject: Re: [DMD Pioneers] Care giver co-op



Adele,

That sounds like a really good idea. The flyer makes sense and I think it
will connect with the audience you are trying to enlist. I agree with
Jessica, try spreading the word in as many ways as possible on the internet
and otherwise. In addition to Jessica's suggestions, also try
baltimore.backpage.com - I have found the KC backpage to be a great free
classified to advertise for PAs for myself.

---Jason

On Fri, May 2, 2008 at 8:54 AM, Adele <jasona65@verizon.
<mailto:jasona65%40verizon.net> net> wrote:

> Here is our official flyer we've made up to go to our local MDA office
> for
> distribution to all of the local DMD/BMD families here.
>
> Care Givers Co-op
>
> Sharing the Caring
>
> Are you the parent of a young person with a Neuro-Muscular condition who
> finds it hard, getting quality care for you child? Would you like to have
> a
> place to drop your young person off for a spa day? We have a place for
> you!
>
> As parents and caregivers of young adults with Duchenne MD, we quite often
> find ourselves as much a prisoner of their disease as they are.
>
> I'm Vickie Beard; I have two sons ages 26 and 28 with DMD. This Co-op has
> been an ongoing discussion between myself and my friend, Adele Abramowitz,
> whose son, Jason(23) also has DMD. My house is completely accessible and
> well equipped to care for as many as 2 or more additional young people for
> overnight care and extended vacation care.
>
> We are interested in hearing from other families in the area, to set up a
> meeting to discuss the implementation of a co-op for sharing care.
>
> Should you be interested in the co-op but find you are unable to trade for
> care a fee for service arrangement can be discussed at length.
>
> Are you interested? If so, please contact either Adele or my self at:
>
> Vickie <mailto:Vickie@... <mailto:Vickie%40aol.com>
<Vickie%40aol.com>> Vickie@... <mailto:Vickie%40aol.com>
<Vickie%40aol.com>Adele
> <mailto:Jasona65@verizon. <mailto:Jasona65%40verizon.net> net
<Jasona65%40verizon.net>>
> Jasona65@verizon. <mailto:Jasona65%40verizon.net> net
<Jasona65%40verizon.net>
>
> 301-502-1657 mobile 443-520-1331 mobile
>
> 301-262-9515 home 410-964-1223 home
>
> _____
>
> I am using the free version of SPAMfighter for private users.
> It has removed 362 spam emails to date.
> Paying users do not have this message in their emails.
> Try SPAMfighter <http://www.spamfigh <http://www.spamfighter.com/len>
ter.com/len> for free now!
>
> [Non-text portions of this message have been removed]
>
>
>

--
You may disappointed if you fail, but you are doomed if you don't try.
Beverly Sills

[Non-text portions of this message have been removed]




   _____

I am using the free version of SPAMfighter for private users.
It has removed 362 spam emails to date.
Paying users do not have this message in their emails.
Try SPAMfighter <http://www.spamfighter.com/len>  for free now!



[Non-text portions of this message have been removed]

I have already done that.  Thanks for thinking about that.



Adele



   _____

From: dmdpioneers@yahoogroups.com [mailto:dmdpioneers@yahoogroups.com] On
Behalf Of Jessica Resnick-Ault
Sent: Friday, May 02, 2008 10:02 AM
To: dmdpioneers@yahoogroups.com
Subject: Re: [DMD Pioneers] Care giver co-op



I think you might also want to distribute through other organizations (PPMD
bulletin board; craigslist.org) to reach the widest possible audience.
-Jessica

On 5/2/08, Adele <jasona65@verizon. <mailto:jasona65%40verizon.net> net>
wrote:
>
> Here is our official flyer we've made up to go to our local MDA office
> for
> distribution to all of the local DMD/BMD families here.
>
> Care Givers Co-op
>
> Sharing the Caring
>
> Are you the parent of a young person with a Neuro-Muscular condition who
> finds it hard, getting quality care for you child? Would you like to have
> a
> place to drop your young person off for a spa day? We have a place for
> you!
>
> As parents and caregivers of young adults with Duchenne MD, we quite often
> find ourselves as much a prisoner of their disease as they are.
>
> I'm Vickie Beard; I have two sons ages 26 and 28 with DMD. This Co-op has
> been an ongoing discussion between myself and my friend, Adele Abramowitz,
> whose son, Jason(23) also has DMD. My house is completely accessible and
> well equipped to care for as many as 2 or more additional young people for
> overnight care and extended vacation care.
>
> We are interested in hearing from other families in the area, to set up a
> meeting to discuss the implementation of a co-op for sharing care.
>
> Should you be interested in the co-op but find you are unable to trade for
> care a fee for service arrangement can be discussed at length.
>
> Are you interested? If so, please contact either Adele or my self at:
>
> Vickie <mailto:Vickie@... <mailto:Vickie%40aol.com>
<Vickie%40aol.com>> Vickie@... <mailto:Vickie%40aol.com>
<Vickie%40aol.com>Adele
> <mailto:Jasona65@verizon. <mailto:Jasona65%40verizon.net> net
<Jasona65%40verizon.net>>
> Jasona65@verizon. <mailto:Jasona65%40verizon.net> net
<Jasona65%40verizon.net>
>
> 301-502-1657 mobile 443-520-1331 mobile
>
> 301-262-9515 home 410-964-1223 home
>
> _____
>
> I am using the free version of SPAMfighter for private users.
> It has removed 362 spam emails to date.
> Paying users do not have this message in their emails.
> Try SPAMfighter <http://www.spamfigh <http://www.spamfighter.com/len>
ter.com/len> for free now!
>
> [Non-text portions of this message have been removed]
>
>
>

--
*************************
Jessica Resnick-Ault
jrault@gmail. <mailto:jrault%40gmail.com> com
or
jra@.... <mailto:jra%40alumni.brown.edu> edu

[Non-text portions of this message have been removed]




   _____

I am using the free version of SPAMfighter for private users.
It has removed 362 spam emails to date.
Paying users do not have this message in their emails.
Try SPAMfighter <http://www.spamfighter.com/len>  for free now!



[Non-text portions of this message have been removed]

Adele,

That sounds like a really good idea.  The flyer makes sense and I think it
will connect with the audience you are trying to enlist.  I agree with
Jessica, try spreading the word in as many ways as possible on the internet
and otherwise.  In addition to Jessica's suggestions, also try
baltimore.backpage.com - I have found the KC backpage to be a great free
classified to advertise for PAs for myself.

---Jason


On Fri, May 2, 2008 at 8:54 AM, Adele <jasona65@...> wrote:

>   Here is our official flyer we've made up to go to our local MDA office
> for
> distribution to all of the local DMD/BMD families here.
>
> Care Givers Co-op
>
> Sharing the Caring
>
> Are you the parent of a young person with a Neuro-Muscular condition who
> finds it hard, getting quality care for you child? Would you like to have
> a
> place to drop your young person off for a spa day? We have a place for
> you!
>
> As parents and caregivers of young adults with Duchenne MD, we quite often
> find ourselves as much a prisoner of their disease as they are.
>
> I'm Vickie Beard; I have two sons ages 26 and 28 with DMD. This Co-op has
> been an ongoing discussion between myself and my friend, Adele Abramowitz,
> whose son, Jason(23) also has DMD. My house is completely accessible and
> well equipped to care for as many as 2 or more additional young people for
> overnight care and extended vacation care.
>
> We are interested in hearing from other families in the area, to set up a
> meeting to discuss the implementation of a co-op for sharing care.
>
> Should you be interested in the co-op but find you are unable to trade for
> care a fee for service arrangement can be discussed at length.
>
> Are you interested? If so, please contact either Adele or my self at:
>
> Vickie <mailto:Vickie@... <Vickie%40aol.com>>
Vickie@...<Vickie%40aol.com>Adele
> <mailto:Jasona65@... <Jasona65%40verizon.net>>
> Jasona65@... <Jasona65%40verizon.net>
>
> 301-502-1657 mobile 443-520-1331 mobile
>
> 301-262-9515 home 410-964-1223 home
>
> _____
>
> I am using the free version of SPAMfighter for private users.
> It has removed 362 spam emails to date.
> Paying users do not have this message in their emails.
> Try SPAMfighter <http://www.spamfighter.com/len> for free now!
>
> [Non-text portions of this message have been removed]
>
>
>



--
You may disappointed if you fail, but you are doomed if you don't try.
Beverly Sills


[Non-text portions of this message have been removed]

First - Note to all who have commented on this subject - THANK YOU!  I plan
to respond to everyone ASAP.

Tom -

It is interesting to read about your experience.  I had heard from one
counselor at our camp who has a mild form of MD and has been going since a
kid about when they enforced the 21 y/o limit, and that before that it was
nearly any age.  I can only imagine the uproar it caused, and the people who
got hurt.  It's interesting that around 20 years later (somewhere around
2004) the 21 y/o limit was being challenged again, this time in court, to
challenge the discrimination of not letting someone with MD continue as a
camper after 21.  It was also an opportunity for MDA to crack down on
renegade camps that let some volutunteers who need physical assistance
themselves continue as volunteers.  It's interesting because, it turns out
that some people were upset at me from this one particular camp, because I
had caught word they were letting former campers be volunteers after age 21,
and I was being told NO, so I wrote a letter to corporate thinking that it
would make sense to point out how well it works for other camps - that
backfired and MDA instead pulled out their whip and some blamed me for
pointing it out (even though it would have got noticed eventually anyway).
Plus, I had no mal-intent, I simply wanted to keep contributing to camp in
the same ways the people from that camp were.  I also heard the camp
director of that camp was beloved and got the quick boot, creating really
bad feelings towards MDA for many campers and counselors.  And now we see
ourself full-swing, and it is sad that MDA is more worried about $$$s and
liability instead of trying to nurture the spirit of camp that was created
so many years ago and continues today.

And I agree, for the older guys to serve as role models to the young ones,
is a great function of camp when it happens.  MDA should totally encourage
this type of model for giving the younger ones more hope by showing the
accomplishments of the older kids, and adults.  I know I tried to do this as
much as I could when I was at camp (little kids loved me at camp).
Unfortunately, the truth is often-times the older kids only serve as a scare
tactic for the youger ones, serving only as a reminder of "how you will end
up."  I think their is a fundamental mentality at MDA that just doesn't "get
it" and there needs to be a fundamental paradigm shift in thinking.

I am 100% behind you on using he power of the internet to gather people
together to challenge this and change the thinking at MDA.  I hope that
together we can start a movement!  I am not sure how, but Tom if you could
e-mail me privately, I think it would be great to brainstorm through e-mail
and IM.  Please, all others that are interested, please contact me too.  I'm
in the process of trying to gather names of people interested challenging
the ruling and to show, as Tom said, MDA the "value of the older campers."

I'm thinking some kind of internet "SAVE CAMP" campaign.  With the internet
there are so many ways we could spread the word quickly.

Thanks Tom for sharing,
Jason




On Thu, May 1, 2008 at 10:21 PM, tjm47 <tjm47@...> wrote:

>   We fought this before when they enforce the 21 year old limit. I think
> it was 1984. It villainized our regional director for many people until the
> guy retired nearly 20 years later....
>
> I personally went to camp until I was 23, serving as a counselor
> (unofficially) the last two years. I actually took my iron lung which I was
> sleeping in at night at the time. Anyway, I think having the older guys that
> were in college at camp was an inspiration to the younger kids coming up.
> Maybe that's not in the official camp purpose statement but I think it is a
> huge thing for the younger kids to see what the older campers are able to
> do.
>
> We need to use the new connectedness of everyone these days with the
> Internet to try to make a change in this policy. Since they already won an
> ADA lawsuit, we will have to make MDA see the value of the older campers. If
> they can't see it our way, maybe they need to be made the villain to the
> public to get them to see our way.
>
> Tom Mecke
>
>
> ----- Original Message -----
> From: Jessica Resnick-Ault
> To: dmdpioneers@yahoogroups.com <dmdpioneers%40yahoogroups.com>
> Sent: Thursday, May 01, 2008 7:25 PM
> Subject: Re: [DMD Pioneers] Re: Camp Age Limit Change!
>
> First of all, I do think that, if they change it, the change should be
> gradual + not sprung upon people.
> Second (and here's where I get controversial): I think it's okay to
> cut off at 17 under 3 conditions:
> 1. People with all forms of MD who are 18+ are allowed to be
> counselors or volunteers in an active + engaged way.
> 2. People who are not cognitively able to be counselors be allowed to
> be campers until age 21 (as public schools work).
> 3. The move is part of an effort to free up $ to provide the summer
> experience to a larger number of kids.
>
> That's just one more perspective, though. To me, a system like that
> would make MDA camp more similar to average summercamp, and enable
> young adults with muscular dystrophy have the same leadership
> opportunities as their peers.
> Frankly, colleges want to hear that you've volunteered or counseled,
> rather than being a camper, in today's competitive world.
>
> On 5/1/08, Jason Gallagher <elevatorsout@...<elevatorsout%40gmail.com>>
> wrote:
> > Follow-up -
> >
> > I may have been wrong about the part where they don't get to go back
> this
> > year. According to this 21 y/o lady's blog -
> >
>
http://blog.myspace.com/index.cfm?fuseaction=blog.view&friendID=36881558&blogID=\
385811265
> > It doesn't take effect until 2009, which would mean 17-21 y/o would get
> to
> > go back this year.
> >
> > But still...
> >
> > I'm going to keep investigating.
> >
> > ---Jason
> >
> >
> > On Thu, May 1, 2008 at 5:54 PM, Jason Gallagher
<elevatorsout@...<elevatorsout%40gmail.com>
> >
> > wrote:
> >
> > > Hello Fellow DMD'ers -
> > >
> > > For all of you who went to camp (and had the best time of your life) -
> > > have you heard that the max age limit has been changed to 17 (from
> 21)???
> > I
> > > just got an online message from a younger guy who was 17 at camp last
> > year,
> > > and he got a letter just the other day saying he can no longer go to
> camp.
> > > No warning, no grandfathering, nothing - just, you're too old. This is
> > > simply ridiculous, in my opinion. It's bad enough they changed the age
> (I
> > > disagree with completely), but to not give the 17 y/o's one last
> hurrah or
> > > to have let them know last year so they could say their goodbye's just
> > adds
> > > insult to injury!
> > >
> > > I know you can tell I'm upset (I am) - so I'm trying to stay calm,
> since I
> > > don't know all the details. But you can bet I am going to find them!
> Has
> > > anyone else heard about this???
> > >
> > > ---Jason
> > >
> > >
> > > --
> > > You may disappointed if you fail, but you are doomed if you don't try.
> > > Beverly Sills
> >
> >
> >
> >
> > --
> > You may disappointed if you fail, but you are doomed if you don't try.
> > Beverly Sills
> >
> >
> > [Non-text portions of this message have been removed]
> >
> >
>
> --
> *************************
> Jessica Resnick-Ault
> jrault@... <jrault%40gmail.com>
> or
> jra@... <jra%40alumni.brown.edu>
>
> ----------------------------------------------------------
>
> No virus found in this incoming message.
> Checked by AVG.
> Version: 7.5.524 / Virus Database: 269.23.7/1409 - Release Date: 5/1/2008
> 8:39 AM
>
> [Non-text portions of this message have been removed]
>
>
>



--
You may disappointed if you fail, but you are doomed if you don't try.
Beverly Sills


[Non-text portions of this message have been removed]

I think you might also want to distribute through other organizations (PPMD
bulletin board; craigslist.org) to reach the widest possible audience.
-Jessica


On 5/2/08, Adele <jasona65@...> wrote:
>
>   Here is our official flyer we've made up to go to our local MDA office
> for
> distribution to all of the local DMD/BMD families here.
>
> Care Givers Co-op
>
> Sharing the Caring
>
> Are you the parent of a young person with a Neuro-Muscular condition who
> finds it hard, getting quality care for you child? Would you like to have
> a
> place to drop your young person off for a spa day? We have a place for
> you!
>
> As parents and caregivers of young adults with Duchenne MD, we quite often
> find ourselves as much a prisoner of their disease as they are.
>
> I'm Vickie Beard; I have two sons ages 26 and 28 with DMD. This Co-op has
> been an ongoing discussion between myself and my friend, Adele Abramowitz,
> whose son, Jason(23) also has DMD. My house is completely accessible and
> well equipped to care for as many as 2 or more additional young people for
> overnight care and extended vacation care.
>
> We are interested in hearing from other families in the area, to set up a
> meeting to discuss the implementation of a co-op for sharing care.
>
> Should you be interested in the co-op but find you are unable to trade for
> care a fee for service arrangement can be discussed at length.
>
> Are you interested? If so, please contact either Adele or my self at:
>
> Vickie <mailto:Vickie@... <Vickie%40aol.com>>
Vickie@...<Vickie%40aol.com>Adele
> <mailto:Jasona65@... <Jasona65%40verizon.net>>
> Jasona65@... <Jasona65%40verizon.net>
>
> 301-502-1657 mobile 443-520-1331 mobile
>
> 301-262-9515 home 410-964-1223 home
>
> _____
>
> I am using the free version of SPAMfighter for private users.
> It has removed 362 spam emails to date.
> Paying users do not have this message in their emails.
> Try SPAMfighter <http://www.spamfighter.com/len> for free now!
>
> [Non-text portions of this message have been removed]
>
>
>



--
*************************
Jessica Resnick-Ault
jrault@...
or
jra@...


[Non-text portions of this message have been removed]

Here is our official flyer we've made up to go to our local MDA office for
distribution to all of the local DMD/BMD families here.



Care Givers Co-op

Sharing the Caring



Are you the parent of a young person with a Neuro-Muscular condition who
finds it hard, getting quality care for you child?  Would you like to have a
place to drop your young person off for a spa day?  We have a place for you!



As parents and caregivers of young adults with Duchenne MD, we quite often
find ourselves as much a prisoner of their disease as they are.



I'm Vickie Beard; I have two sons ages 26 and 28 with DMD.  This Co-op has
been an ongoing discussion between myself and my friend, Adele Abramowitz,
whose son, Jason(23) also has DMD.  My house is completely accessible and
well equipped to care for as many as 2 or more additional young people for
overnight care and extended vacation care.



We are interested in hearing from other families in the area, to set up a
meeting to discuss the implementation of a co-op for sharing care.

Should you be interested in the co-op but find you are unable to trade for
care a fee for service arrangement can be discussed at length.



Are you interested?  If so, please contact either Adele or my self at:



Vickie      <mailto:Vickie@...> Vickie@...                  Adele
<mailto:Jasona65@...> Jasona65@...

301-502-1657 mobile                         443-520-1331 mobile

301-262-9515 home                           410-964-1223 home




   _____

I am using the free version of SPAMfighter for private users.
It has removed 362 spam emails to date.
Paying users do not have this message in their emails.
Try SPAMfighter <http://www.spamfighter.com/len>  for free now!



[Non-text portions of this message have been removed]

Thanks, Jonathan... I was just thinking, I'm pretty sure that the summer
Pete was 17, he attended a mainstream summer program at the college he later
matriculated to. How cool would it be if there was an on-campus program that
was EXCLUSIVLEY for people with muscular dystrophy? It could be geared
toward providing that peer-to-peer contact, while also enabling rising
juniors to figure out how they would tackle the challenges posed by college
or vocational programs, and perhaps have support (like an upward-bound style
program) that would provide guidance during the application season..




On 5/2/08, jhinek@... <jhinek@...> wrote:
>
>   On 5/2/08, Jessica Resnick-Ault <jrault@... <jrault%40gmail.com>>
> wrote:
> > While I, like you, am disappointed in the MDA's failure to serve people
> in
> > this age bracket, and think their reasons for excluding young adults are
> > LAME, I also think that the organization can, at times, infantilize the
> > people it serves, and that programming that is more analogous to the
> > opportunities for able-bodied peers should be pursued as an alternative.
>
> Good point, Jessica. This could be viewed as an opportunity to
> advocate for age appropriate summer programs. With everyone's
> attention on this, it might be the perfect time. I assume that this
> new policy has freed up some resources.
>
> --
> Jonathan
>
>



--
*************************
Jessica Resnick-Ault
jrault@...
or
jra@...


[Non-text portions of this message have been removed]

On 5/2/08, Jessica Resnick-Ault <jrault@...> wrote:
>  While I, like you, am disappointed in the MDA's failure to serve people in
> this age bracket, and think their reasons for excluding young adults are
> LAME, I also think that the organization can, at times, infantilize the
> people it serves, and that programming that is more analogous to the
> opportunities for able-bodied peers should be pursued as an alternative.

Good point, Jessica. This could be viewed as an opportunity to
advocate for age appropriate summer programs. With everyone's
attention on this, it might be the perfect time. I assume that this
new policy has freed up some resources.

--
Jonathan

I knew for a number of years, MDA has been trying to lower the age, but I'm
shocked that no notice had been given about the change.  I'm very upset
also.  My Jason. Now 23, it doesn't matter, but like you said, all of those
other 17 years olds, that thought they had a few more years at camp.  But
then, if they were going to change, why not at 18 when they legally become
adults?



Adele



   _____

From: dmdpioneers@yahoogroups.com [mailto:dmdpioneers@yahoogroups.com] On
Behalf Of Jason Gallagher
Sent: Thursday, May 01, 2008 6:55 PM
To: dmdpioneers@yahoogroups.com
Subject: [DMD Pioneers] Camp Age Limit Change!



Hello Fellow DMD'ers -

For all of you who went to camp (and had the best time of your life) - have
you heard that the max age limit has been changed to 17 (from 21)??? I just
got an online message from a younger guy who was 17 at camp last year, and
he got a letter just the other day saying he can no longer go to camp. No
warning, no grandfathering, nothing - just, you're too old. This is simply
ridiculous, in my opinion. It's bad enough they changed the age (I disagree
with completely), but to not give the 17 y/o's one last hurrah or to have
let them know last year so they could say their goodbye's just adds insult
to injury!

I know you can tell I'm upset (I am) - so I'm trying to stay calm, since I
don't know all the details. But you can bet I am going to find them! Has
anyone else heard about this???

---Jason

--
You may disappointed if you fail, but you are doomed if you don't try.
Beverly Sills

[Non-text portions of this message have been removed]




   _____

I am using the free version of SPAMfighter for private users.
It has removed 362 spam emails to date.
Paying users do not have this message in their emails.
Try SPAMfighter <http://www.spamfighter.com/len>  for free now!



[Non-text portions of this message have been removed]

Jason--
    You're right that I didn't go to MDA camp, it's a caveat that I should
have put in my first e-mail, but I was typing by blackberry, so I kept it
short. But I did go to summer camp for many, many years.  This e-mail is
long, and a bit disjointed, because I'm on my way out the door, so please
bear with me.
    I think Terri's point hits what I'm trying to get at: being a camper is
not an necessarily an engaging activity for a cognitively-able 20 year-old.
Rather, such a person should be engaged at a leadership level.
    To Sherri's point: I see no reason that just because someone needs
assistance, they would not be able to be a counselor. Rather, most of
America's highly-ranked camps divide out their program staff and cabin
staff. While I agree that cabin volunteers need to be able to help the
campers, program staff don't need this ability. Someone like my husband, at
age 18-21 would have made a FABULOUS music counselor, if paired with an
able-bodied music co-counselor, who could help him get around. Many DMDers
we've met or read about are extremely talented: Justin Rosenbloom would be
an awesome video / drama counselor; Todd Galli sounds qualified to be a camp
chaplain, as would be my brother-in-law, who also has DMD.  Many MDA-served
kids also have less severe physical symptoms, and might be able to help with
activities like swimming, etc.
    As to your point, Jason, that the ship has already sailed... I don't
believe that there are many cases where precedent cannot be overturned. I'm
on the board of three non-profit organizations. All of which can be stuck in
their ways, but all of which can be fought, if a mass of board members are
engaged. I have seen this happen on numerous occasions. If the MDA is so
intransigent that it cannot be changed by board members, then perhaps a
group like PPMD should be engaged to provide an alternative solution to this
issue.
  Additionally, I think if the counselor solution doesn't work, MDA should
provide an age-appropriate summer program for young adults: something
modeled after girl and boy state, perhaps, or another leadership-style
program.
   While I, like you, am disappointed in the MDA's failure to serve people in
this age bracket, and think their reasons for excluding young adults are
LAME, I also think that the organization can, at times, infantilize the
people it serves, and that programming that is more analogous to the
opportunities for able-bodied peers should be pursued as an alternative.

Best,
Jessica


[Non-text portions of this message have been removed]

I thought that my son said that one of the guys here was a counselor after he
turned 21 but I'm not sure and if so how it happened. I'll ask him. It's hard to
see so many here upset and then my kids complain every year about how boring it
is and how they hate going. Nathan's refused to go this year and well, Christian
doesnt want to go. I hoped he'd go since it is his last year and Chris wouldn't
have to go alone but even with telling him that he and Alex never went alone, he
won't go. I decided I may as well let them both stay home as its pointles to
force them to go if they don't want and next year Christian may be more then
happy to go. Nathan (and Alex when he was alive) never wanted to go and Nathan
only wanted to go last year because they planted a tree for Alex.
Terri mom of Nathan 20, DMD, ADD Christian 11, DMD, ADHD Alex 16, DMD  
(3/29/91-4/2/07)
DMD = Duchenne Muscular Dystrophy
"The clock of life is wound but once, and no man has the power to tell just when
the hands will stop... At late or early hour..  Now is the only time you own...
Live, love, toil with a will... Place no faith in time, for the clock may soon
be still. ";

   ----- Original Message -----
   From: Jessica Resnick-Ault
   To: dmdpioneers@yahoogroups.com
   Sent: Thursday, May 01, 2008 8:25 PM
   Subject: Re: [DMD Pioneers] Re: Camp Age Limit Change!


   First of all, I do think that, if they change it, the change should be
   gradual + not sprung upon people.
   Second (and here's where I get controversial): I think it's okay to
   cut off at 17 under 3 conditions:
   1. People with all forms of MD who are 18+ are allowed to be
   counselors or volunteers in an active + engaged way.
   2. People who are not cognitively able to be counselors be allowed to
   be campers until age 21 (as public schools work).
   3. The move is part of an effort to free up $ to provide the summer
   experience to a larger number of kids.

   That's just one more perspective, though. To me, a system like that
   would make MDA camp more similar to average summercamp, and enable
   young adults with muscular dystrophy have the same leadership
   opportunities as their peers.
   Frankly, colleges want to hear that you've volunteered or counseled,
   rather than being a camper, in today's competitive world.

   On 5/1/08, Jason Gallagher <elevatorsout@...> wrote:
   > Follow-up -
   >
   > I may have been wrong about the part where they don't get to go back this
   > year. According to this 21 y/o lady's blog -
   >
http://blog.myspace.com/index.cfm?fuseaction=blog.view&friendID=36881558&blogID=\
385811265
   > It doesn't take effect until 2009, which would mean 17-21 y/o would get to
   > go back this year.
   >
   > But still...
   >
   > I'm going to keep investigating.
   >
   > ---Jason
   >
   >
   > On Thu, May 1, 2008 at 5:54 PM, Jason Gallagher <elevatorsout@...>
   > wrote:
   >
   > > Hello Fellow DMD'ers -
   > >
   > > For all of you who went to camp (and had the best time of your life) -
   > > have you heard that the max age limit has been changed to 17 (from 21)???
   > I
   > > just got an online message from a younger guy who was 17 at camp last
   > year,
   > > and he got a letter just the other day saying he can no longer go to camp.
   > > No warning, no grandfathering, nothing - just, you're too old. This is
   > > simply ridiculous, in my opinion. It's bad enough they changed the age (I
   > > disagree with completely), but to not give the 17 y/o's one last hurrah or
   > > to have let them know last year so they could say their goodbye's just
   > adds
   > > insult to injury!
   > >
   > > I know you can tell I'm upset (I am) - so I'm trying to stay calm, since I
   > > don't know all the details. But you can bet I am going to find them! Has
   > > anyone else heard about this???
   > >
   > > ---Jason
   > >
   > >
   > > --
   > > You may disappointed if you fail, but you are doomed if you don't try.
   > > Beverly Sills
   >
   >
   >
   >
   > --
   > You may disappointed if you fail, but you are doomed if you don't try.
   > Beverly Sills
   >
   >
   > [Non-text portions of this message have been removed]
   >
   >

   --
   *************************
   Jessica Resnick-Ault
   jrault@...
   or
   jra@...




[Non-text portions of this message have been removed]

Personally, my son would not be able to be a counselor
because he needs assistance himself.  I think that he
should still be able to go to camp until he's 21.
It's the one week in the year where his peers are like
him.

My son is congitively able, but could only help on a
non-physical level as a counselor.

After reading the letter, I have a hard time seeing
that they are wanting extra money to send other
campers.  It's a liability thing and they don't want
to take any chances.

Coincidentally, the woman who led our MDA office
retired without notice to her campers and patients
just last week.  I don't know if this change had
anything to do with it or not.

Jason, what is your game plan?  I'm willing to put in
my two cents.

Sherri

--- Jessica Resnick-Ault <jrault@...> wrote:

> First of all, I do think that, if they change it,
> the change should be
> gradual + not sprung upon people.
> Second (and here's where I get controversial): I
> think it's okay to
> cut off at 17 under 3 conditions:
> 1. People with all forms of MD who are 18+ are
> allowed to be
> counselors or volunteers in an active + engaged way.
> 2. People who are not cognitively able to be
> counselors be allowed to
> be campers until age 21 (as public schools work).
> 3. The move is part of an effort to free up $ to
> provide the summer
> experience to a larger number of kids.
>
> That's just one more perspective, though. To me, a
> system like that
> would make MDA camp more similar to average
> summercamp, and enable
> young adults with muscular dystrophy have the same
> leadership
> opportunities as their peers.
> Frankly, colleges want to hear that you've
> volunteered or counseled,
> rather than being a camper, in today's competitive
> world.
>
>
> On 5/1/08, Jason Gallagher <elevatorsout@...>
> wrote:
> > Follow-up -
> >
> > I may have been wrong about the part where they
> don't get to go back this
> > year.  According to this 21 y/o lady's blog -
> >
>
http://blog.myspace.com/index.cfm?fuseaction=blog.view&friendID=36881558&blogID=\
385811265
> > It doesn't take effect until 2009, which would
> mean 17-21 y/o would get to
> > go back this year.
> >
> > But still...
> >
> > I'm going to keep investigating.
> >
> > ---Jason
> >
> >
> > On Thu, May 1, 2008 at 5:54 PM, Jason Gallagher
> <elevatorsout@...>
> > wrote:
> >
> > > Hello Fellow DMD'ers -
> > >
> > > For all of you who went to camp (and had the
> best time of your life) -
> > > have you heard that the max age limit has been
> changed to 17 (from 21)???
> > I
> > > just got an online message from a younger guy
> who was 17 at camp last
> > year,
> > > and he got a letter just the other day saying he
> can no longer go to camp.
> > > No warning, no grandfathering, nothing - just,
> you're too old.  This is
> > > simply ridiculous, in my opinion.  It's bad
> enough they changed the age (I
> > > disagree with completely), but to not give the
> 17 y/o's one last hurrah or
> > > to have let them know last year so they could
> say their goodbye's just
> > adds
> > > insult to injury!
> > >
> > > I know you can tell I'm upset (I am) - so I'm
> trying to stay calm, since I
> > > don't know all the details.  But you can bet I
> am going to find them!  Has
> > > anyone else heard about this???
> > >
> > > ---Jason
> > >
> > >
> > > --
> > > You may disappointed if you fail, but you are
> doomed if you don't try.
> > > Beverly Sills
> >
> >
> >
> >
> > --
> > You may disappointed if you fail, but you are
> doomed if you don't try.
> > Beverly Sills
> >
> >
> > [Non-text portions of this message have been
> removed]
> >
> >
>
>
> --
> *************************
> Jessica Resnick-Ault
> jrault@...
> or
> jra@...
>



      
________________________________________________________________________________\
____
Be a better friend, newshound, and
know-it-all with Yahoo! Mobile.  Try it now. 
http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

Yes, we got the letter earlier this week.  Here's what
it says; and I quote:  "MDA remains committed to
offering a top-qualiy camping program; however,
dramatic shifts in insurance industry and risk
management practices now require that the Association
return to it's fundamental program objective of
offering summer camp opportunities for children
(underline children).  The inescapable reality is
that, as camping and risk management standards change,
so must the Association's policies.  Therefore,
effective with the summer 2009 camp season,
participation in MDA camp will be limited to those
agest 6 through 17.  This age range is consistent with
guidelines established by the American Camp
Association for child-focused programs."

They go on to say that those 18-21 will be invited to
attend camp this year and that MDA staff is working
hard to make a special effort for those "graduating"
from the program in 2008.

This is my son's last year for camp as he is now 17.
The camp week is looked forward to by him as the
highlight of his year.  And now, this is his last
year.

So, that was a real disappointment.  It's also the
week that I get respite from being his full-time
care-giver.

Sherri
--- Jason Gallagher <elevatorsout@...> wrote:

> Hello Fellow DMD'ers -
>
> For all of you who went to camp (and had the best
> time of your life) - have
> you heard that the max age limit has been changed to
> 17 (from 21)???  I just
> got an online message from a younger guy who was 17
> at camp last year, and
> he got a letter just the other day saying he can no
> longer go to camp.  No
> warning, no grandfathering, nothing - just, you're
> too old.  This is simply
> ridiculous, in my opinion.  It's bad enough they
> changed the age (I disagree
> with completely), but to not give the 17 y/o's one
> last hurrah or to have
> let them know last year so they could say their
> goodbye's just adds insult
> to injury!
>
> I know you can tell I'm upset (I am) - so I'm trying
> to stay calm, since I
> don't know all the details.  But you can bet I am
> going to find them!  Has
> anyone else heard about this???
>
> ---Jason
>
>
> --
> You may disappointed if you fail, but you are doomed
> if you don't try.
> Beverly Sills
>
>
> [Non-text portions of this message have been
> removed]
>
>



      
________________________________________________________________________________\
____
Be a better friend, newshound, and
know-it-all with Yahoo! Mobile.  Try it now. 
http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

We fought this before when they enforce the 21 year old limit.  I think it was
1984.  It villainized our regional director for many people until the guy
retired nearly 20 years later....

I personally went to camp until I was 23, serving as a counselor (unofficially)
the last two years.  I actually took my iron lung which I was sleeping in at
night at the time.  Anyway, I think having the older guys that were in college
at camp was an inspiration to the younger kids coming up.  Maybe that's not in
the official camp purpose statement but I think it is a huge thing for the
younger kids to see what the older campers are able to do.

We need to use the new connectedness of everyone these days with the Internet to
try to make a change in this policy.  Since they already won an ADA lawsuit, we
will have to make MDA see the value of the older campers.  If they can't see it
our way, maybe they need to be made the villain to the public to get them to see
our way.

Tom Mecke




   ----- Original Message -----
   From: Jessica Resnick-Ault
   To: dmdpioneers@yahoogroups.com
   Sent: Thursday, May 01, 2008 7:25 PM
   Subject: Re: [DMD Pioneers] Re: Camp Age Limit Change!


   First of all, I do think that, if they change it, the change should be
   gradual + not sprung upon people.
   Second (and here's where I get controversial): I think it's okay to
   cut off at 17 under 3 conditions:
   1. People with all forms of MD who are 18+ are allowed to be
   counselors or volunteers in an active + engaged way.
   2. People who are not cognitively able to be counselors be allowed to
   be campers until age 21 (as public schools work).
   3. The move is part of an effort to free up $ to provide the summer
   experience to a larger number of kids.

   That's just one more perspective, though. To me, a system like that
   would make MDA camp more similar to average summercamp, and enable
   young adults with muscular dystrophy have the same leadership
   opportunities as their peers.
   Frankly, colleges want to hear that you've volunteered or counseled,
   rather than being a camper, in today's competitive world.

   On 5/1/08, Jason Gallagher <elevatorsout@...> wrote:
   > Follow-up -
   >
   > I may have been wrong about the part where they don't get to go back this
   > year. According to this 21 y/o lady's blog -
   >
http://blog.myspace.com/index.cfm?fuseaction=blog.view&friendID=36881558&blogID=\
385811265
   > It doesn't take effect until 2009, which would mean 17-21 y/o would get to
   > go back this year.
   >
   > But still...
   >
   > I'm going to keep investigating.
   >
   > ---Jason
   >
   >
   > On Thu, May 1, 2008 at 5:54 PM, Jason Gallagher <elevatorsout@...>
   > wrote:
   >
   > > Hello Fellow DMD'ers -
   > >
   > > For all of you who went to camp (and had the best time of your life) -
   > > have you heard that the max age limit has been changed to 17 (from 21)???
   > I
   > > just got an online message from a younger guy who was 17 at camp last
   > year,
   > > and he got a letter just the other day saying he can no longer go to camp.
   > > No warning, no grandfathering, nothing - just, you're too old. This is
   > > simply ridiculous, in my opinion. It's bad enough they changed the age (I
   > > disagree with completely), but to not give the 17 y/o's one last hurrah or
   > > to have let them know last year so they could say their goodbye's just
   > adds
   > > insult to injury!
   > >
   > > I know you can tell I'm upset (I am) - so I'm trying to stay calm, since I
   > > don't know all the details. But you can bet I am going to find them! Has
   > > anyone else heard about this???
   > >
   > > ---Jason
   > >
   > >
   > > --
   > > You may disappointed if you fail, but you are doomed if you don't try.
   > > Beverly Sills
   >
   >
   >
   >
   > --
   > You may disappointed if you fail, but you are doomed if you don't try.
   > Beverly Sills
   >
   >
   > [Non-text portions of this message have been removed]
   >
   >

   --
   *************************
   Jessica Resnick-Ault
   jrault@...
   or
   jra@...





------------------------------------------------------------------------------


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AM


[Non-text portions of this message have been removed]

Jessica,

A few things:

1) Were you a camper?  How many years?  Did you enjoy your experience?

2) I agree 18+ should be allowed to counselors or volunteers if they can
productively contribute to the camp in some way.  Unfortunately, that
shipped sailed a long time ago.  Camp rules state that a counselor must be
able to "lift and care for a camper" and thus anyone who has phyisical
conditions can be a counselor.  There was a lawsuit in Witchita, KS claiming
ADA discrimination and it failed.
http://www.thefreelibrary.com/A+price+on+volunteerism:+the+public+has+a+higher+d\
uty+to+accommodate...-a0169924844
Some friends of mine were involved in that lawsuit.  I agree with what they
had to say, and I think the rule is disciminatory, and also unfairly
enforced.  SInce half the "able-bodied" petite women at camp could never
lift one of the "big boys" - I've know some counselors who could barely lift
the little ones.  So while I agree with your premise, and I still think it
should be fought for, the chances are slim, and a bigger picture awaits.

3) $$$s - Why does the their have to be a $$$ limit?  If more kids want in -
then free-up the $$$s - make it a priority.  If you ever been good-will
ambassador the one thing the MDA loves for you to do is talk-up camp.  They
blanket donors with camp brochures.  The telethon gets the most calls when
the cute kids are having fun at camp.  There is a perception that this money
is being spent on camp and MDA plays it up.  I am sure if donors knew about
this change they'd be less likely to donate.

4) Camp for campers isn't about developing job skills.  For many it's their
only opportunity outside the house, away from parents, and to have real fun
w/o any real world stereotypes.  Look - I think the fact that it is the only
opportunity is wrong, and I think more outside of camp independent living
actvities should be encouraged.  But camp provides a great social and
emotional service to many, even those of us who are indpendent outside of
camp.  If it weren't for camp, I'd not have many of the opportunities
outside of camp because of friends that have helped me, or I've helped them.
IN one case a counselor became my room-mate, it would have been much harder
to find someone if it weren't for camp.  Not to mention the life-long
friendships.  There are so many intangible benefits that camp really should
be a life-long deal.

5) I believe it is rules like this that show MDAs clear lack of concern for
the immediate well-being and livliness of adults with MD.

6) I'd like to encourage anyone who knows camp counselors or campers in that
age range to band together to fight this, because like I said before, if the
donors and the public knew the truth, there would be less money coming in,
and MDA would panic.  I am certainly willing to help.

----Jason


On Thu, May 1, 2008 at 7:25 PM, Jessica Resnick-Ault <jrault@...>
wrote:

>   First of all, I do think that, if they change it, the change should be
> gradual + not sprung upon people.
> Second (and here's where I get controversial): I think it's okay to
> cut off at 17 under 3 conditions:
> 1. People with all forms of MD who are 18+ are allowed to be
> counselors or volunteers in an active + engaged way.
> 2. People who are not cognitively able to be counselors be allowed to
> be campers until age 21 (as public schools work).
> 3. The move is part of an effort to free up $ to provide the summer
> experience to a larger number of kids.
>
> That's just one more perspective, though. To me, a system like that
> would make MDA camp more similar to average summercamp, and enable
> young adults with muscular dystrophy have the same leadership
> opportunities as their peers.
> Frankly, colleges want to hear that you've volunteered or counseled,
> rather than being a camper, in today's competitive world.
>
>
> On 5/1/08, Jason Gallagher <elevatorsout@...<elevatorsout%40gmail.com>>
> wrote:
> > Follow-up -
> >
> > I may have been wrong about the part where they don't get to go back
> this
> > year. According to this 21 y/o lady's blog -
> >
>
http://blog.myspace.com/index.cfm?fuseaction=blog.view&friendID=36881558&blogID=\
385811265
> > It doesn't take effect until 2009, which would mean 17-21 y/o would get
> to
> > go back this year.
> >
> > But still...
> >
> > I'm going to keep investigating.
> >
> > ---Jason
> >
> >
> > On Thu, May 1, 2008 at 5:54 PM, Jason Gallagher
<elevatorsout@...<elevatorsout%40gmail.com>
> >
> > wrote:
> >
> > > Hello Fellow DMD'ers -
> > >
> > > For all of you who went to camp (and had the best time of your life) -
> > > have you heard that the max age limit has been changed to 17 (from
> 21)???
> > I
> > > just got an online message from a younger guy who was 17 at camp last
> > year,
> > > and he got a letter just the other day saying he can no longer go to
> camp.
> > > No warning, no grandfathering, nothing - just, you're too old. This is
> > > simply ridiculous, in my opinion. It's bad enough they changed the age
> (I
> > > disagree with completely), but to not give the 17 y/o's one last
> hurrah or
> > > to have let them know last year so they could say their goodbye's just
> > adds
> > > insult to injury!
> > >
> > > I know you can tell I'm upset (I am) - so I'm trying to stay calm,
> since I
> > > don't know all the details. But you can bet I am going to find them!
> Has
> > > anyone else heard about this???
> > >
> > > ---Jason
> > >
> > >
> > > --
> > > You may disappointed if you fail, but you are doomed if you don't try.
> > > Beverly Sills
> >
> >
> >
> >
> > --
> > You may disappointed if you fail, but you are doomed if you don't try.
> > Beverly Sills
> >
> >
> > [Non-text portions of this message have been removed]
> >
> >
>
> --
> *************************
> Jessica Resnick-Ault
> jrault@... <jrault%40gmail.com>
> or
> jra@... <jra%40alumni.brown.edu>
>
>



--
You may disappointed if you fail, but you are doomed if you don't try.
Beverly Sills


[Non-text portions of this message have been removed]

First of all, I do think that, if they change it, the change should be
gradual + not sprung upon people.
Second (and here's where I get controversial): I think it's okay to
cut off at 17 under 3 conditions:
1. People with all forms of MD who are 18+ are allowed to be
counselors or volunteers in an active + engaged way.
2. People who are not cognitively able to be counselors be allowed to
be campers until age 21 (as public schools work).
3. The move is part of an effort to free up $ to provide the summer
experience to a larger number of kids.

That's just one more perspective, though. To me, a system like that
would make MDA camp more similar to average summercamp, and enable
young adults with muscular dystrophy have the same leadership
opportunities as their peers.
Frankly, colleges want to hear that you've volunteered or counseled,
rather than being a camper, in today's competitive world.


On 5/1/08, Jason Gallagher <elevatorsout@...> wrote:
> Follow-up -
>
> I may have been wrong about the part where they don't get to go back this
> year.  According to this 21 y/o lady's blog -
>
http://blog.myspace.com/index.cfm?fuseaction=blog.view&friendID=36881558&blogID=\
385811265
> It doesn't take effect until 2009, which would mean 17-21 y/o would get to
> go back this year.
>
> But still...
>
> I'm going to keep investigating.
>
> ---Jason
>
>
> On Thu, May 1, 2008 at 5:54 PM, Jason Gallagher <elevatorsout@...>
> wrote:
>
> > Hello Fellow DMD'ers -
> >
> > For all of you who went to camp (and had the best time of your life) -
> > have you heard that the max age limit has been changed to 17 (from 21)???
> I
> > just got an online message from a younger guy who was 17 at camp last
> year,
> > and he got a letter just the other day saying he can no longer go to camp.
> > No warning, no grandfathering, nothing - just, you're too old.  This is
> > simply ridiculous, in my opinion.  It's bad enough they changed the age (I
> > disagree with completely), but to not give the 17 y/o's one last hurrah or
> > to have let them know last year so they could say their goodbye's just
> adds
> > insult to injury!
> >
> > I know you can tell I'm upset (I am) - so I'm trying to stay calm, since I
> > don't know all the details.  But you can bet I am going to find them!  Has
> > anyone else heard about this???
> >
> > ---Jason
> >
> >
> > --
> > You may disappointed if you fail, but you are doomed if you don't try.
> > Beverly Sills
>
>
>
>
> --
> You may disappointed if you fail, but you are doomed if you don't try.
> Beverly Sills
>
>
> [Non-text portions of this message have been removed]
>
>


--
*************************
Jessica Resnick-Ault
jrault@...
or
jra@...

Follow-up -

I may have been wrong about the part where they don't get to go back this
year.  According to this 21 y/o lady's blog -
http://blog.myspace.com/index.cfm?fuseaction=blog.view&friendID=36881558&blogID=\
385811265
It doesn't take effect until 2009, which would mean 17-21 y/o would get to
go back this year.

But still...

I'm going to keep investigating.

---Jason


On Thu, May 1, 2008 at 5:54 PM, Jason Gallagher <elevatorsout@...>
wrote:

> Hello Fellow DMD'ers -
>
> For all of you who went to camp (and had the best time of your life) -
> have you heard that the max age limit has been changed to 17 (from 21)???  I
> just got an online message from a younger guy who was 17 at camp last year,
> and he got a letter just the other day saying he can no longer go to camp.
> No warning, no grandfathering, nothing - just, you're too old.  This is
> simply ridiculous, in my opinion.  It's bad enough they changed the age (I
> disagree with completely), but to not give the 17 y/o's one last hurrah or
> to have let them know last year so they could say their goodbye's just adds
> insult to injury!
>
> I know you can tell I'm upset (I am) - so I'm trying to stay calm, since I
> don't know all the details.  But you can bet I am going to find them!  Has
> anyone else heard about this???
>
> ---Jason
>
>
> --
> You may disappointed if you fail, but you are doomed if you don't try.
> Beverly Sills




--
You may disappointed if you fail, but you are doomed if you don't try.
Beverly Sills


[Non-text portions of this message have been removed]

Hello Fellow DMD'ers -

For all of you who went to camp (and had the best time of your life) - have
you heard that the max age limit has been changed to 17 (from 21)???  I just
got an online message from a younger guy who was 17 at camp last year, and
he got a letter just the other day saying he can no longer go to camp.  No
warning, no grandfathering, nothing - just, you're too old.  This is simply
ridiculous, in my opinion.  It's bad enough they changed the age (I disagree
with completely), but to not give the 17 y/o's one last hurrah or to have
let them know last year so they could say their goodbye's just adds insult
to injury!

I know you can tell I'm upset (I am) - so I'm trying to stay calm, since I
don't know all the details.  But you can bet I am going to find them!  Has
anyone else heard about this???

---Jason


--
You may disappointed if you fail, but you are doomed if you don't try.
Beverly Sills


[Non-text portions of this message have been removed]

DMD Pioneers Mailing List Chats are held every Sunday at the time listed below.
3 to 5 PM Eastern
2 to 4 PM Central
1 to 3 PM Mountain
12 to 2 PM Pacific

To chat, please visit
http://health.groups.yahoo.com/group/dmdpioneers/chat

The chat room is always open to any member who wishes to use it.

We do a 1-person lift every morning. That's simply what works best for us. I
realize that there are other people for whom a hoyer is a better option, or
for whom there is no one available who is strong enough to do the lift.
The thing is, this is something that I see as truly a "to each their own"
issue. for us, this is what works. In 2 years or 3 years, something
different may work better. But, for now, this is the option that works for
Pete.
-Jessica


On 5/1/08, Jim Gassen <JGASSEN@...> wrote:
>
>   Greetings,
>
> I attempted a two-person lift and I ended up wedged between two people in
> my bed as all three of us fell into my bed at the same time. I felt like a
> sandwich. Bad idea.
>
> I currently use a ceiling power lift. The sling is designed for an
> amputee. I tie my legs together and the sling provides head support. It does
> the trick and it's reasonably comfortable in the wheelchair.
>
> Peace,
>
> Jim
> ----- Original Message -----
> From: Dwight Eldred Jr.
> To: dmdpioneers@yahoogroups.com <dmdpioneers%40yahoogroups.com>
> Sent: Friday, April 25, 2008 10:37 PM
> Subject: [DMD Pioneers] Lifting
>
> I know this has been a topic on this list before but I was wondering
> how people are getting transferred to and from there wheelchair or
> bed. I probably weigh 90 pounds if I am lucky. My nursing agency has
> recently had issue with the nurses lifting me. It started with just
> having trouble finding people willing and able to do it. Now it seems
> they don't want to be liable if anything were to happen to the nurses.
> So they are going to have a policy where none of their nurses are to
> lift unless it is a two person lift. The way this two-person lift was
> described to me it sounds more dangerous than one person doing it. At
> one point we even tried a lift. The pad for someone who can't support
> their own neck interfered too much with my custom molding from the
> wheelchair. I could not sit comfortably with the pad under me. And
> the other shorter pad proved to be more dangerous even though I could
> sit on it comfortably in the chair. I am just looking for any input
> from people in similar situations. Any help is greatly appreciated.
>
> Dwight Eldred Jr.
> u2lightmyway@... <u2lightmyway%40gmail.com>
>
> [Non-text portions of this message have been removed]
>
>
>



--
*************************
Jessica Resnick-Ault
jrault@...
or
jra@...


[Non-text portions of this message have been removed]

Greetings,

I attempted a two-person lift and I ended up wedged between two people in my bed
as all three of us fell into my bed at the same time.  I felt like a sandwich. 
Bad idea.

I currently use a ceiling power lift.  The sling is designed for an amputee.  I
tie my legs together and the sling provides head support.  It does the trick and
it's reasonably comfortable in the wheelchair.

Peace,

Jim
   ----- Original Message -----
   From: Dwight Eldred Jr.
   To: dmdpioneers@yahoogroups.com
   Sent: Friday, April 25, 2008 10:37 PM
   Subject: [DMD Pioneers] Lifting


   I know this has been a topic on this list before but I was wondering
   how people are getting transferred to and from there wheelchair or
   bed. I probably weigh 90 pounds if I am lucky. My nursing agency has
   recently had issue with the nurses lifting me. It started with just
   having trouble finding people willing and able to do it. Now it seems
   they don't want to be liable if anything were to happen to the nurses.
   So they are going to have a policy where none of their nurses are to
   lift unless it is a two person lift. The way this two-person lift was
   described to me it sounds more dangerous than one person doing it. At
   one point we even tried a lift. The pad for someone who can't support
   their own neck interfered too much with my custom molding from the
   wheelchair. I could not sit comfortably with the pad under me. And
   the other shorter pad proved to be more dangerous even though I could
   sit on it comfortably in the chair. I am just looking for any input
   from people in similar situations. Any help is greatly appreciated.

   Dwight Eldred Jr.
   u2lightmyway@...





[Non-text portions of this message have been removed]

HiJason,

The nursing home expense was an effective strategy.  I agree that cost should
not be the issue.  There should never be a price on the quality of our lives. 
Living independently does present some difficulties, especially when the
caregivers are not reliable.  Finally, the pay in Illinois for pa's is going up
and God willing if I survive to 2011, the pay will be more than $11 perhour.  It
is going up to $9.85 this summer.

Peace,
Jim
   ----- Original Message -----
   From: Jason Gallagher
   To: dmdpioneers@yahoogroups.com
   Sent: Friday, April 25, 2008 1:59 PM
   Subject: Re: [DMD Pioneers] trying to start a co-op


   Jim is absolutely right. There is a universal doctrine of "least
   restrictive environment" and anytime you are threatened with "you should be
   in a nursing home" - you need to remember this, because a nursing home is
   absolutely the "most restrictive environment." As for cost - it is proven
   that, on average, home and community based services cost less than nursing
   homes and hospitals. Individual cases may vary as to whether it will cost
   more in an institution or community (not that it really should matter).

   And I'm sorry to hear about your case worker from hell. I can relater -
   "been there, done that" comes to mind.

   ---Jason G.

   On Fri, Apr 25, 2008 at 1:53 PM, Jim Gassen <JGASSEN@...> wrote:

   > Hi Adele,
   >
   > Yes Illinois has a waiver thing. It was quite a battle with Illinois
   > Department of Rehabilitation Services. Ultimately the justification of 24
   > hour care was that it would be far more expensive for the state to maintain
   > me in a nursing home than at home in the community. Due to the fact that I
   > use an invasive ventilator 24/7, I would need to live in a highly skilled
   > facility that would essentially be a hospital. During the time of our battle
   > I had a case worker from hell so I had to change case workers and after 3
   > months we were successful. One important caviat was that living
   > independently would not put me at risk so having a family member on or near
   > the premises is a crucial element. Of course,every state is different but
   > there is universal doctrin of least restrictive environment.
   >
   > Good luck,
   >
   > Jim
   >
   > ----- Original Message -----
   > From: Adele
   > To: dmdpioneers@yahoogroups.com <dmdpioneers%40yahoogroups.com>
   > Sent: Thursday, April 24, 2008 3:06 PM
   > Subject: RE: [DMD Pioneers] trying to start a co-op
   >
   > Jim, The questions that many of us parents here in Maryland is "How do you
   > get funding for PA's 24/7? Are you in some sort of waiver program?
   >
   > We have many great programs here but none will pay for PA's 24/7 The most
   > many of us can get is 11-14 hours per day. I only have 30 hours per week.
   > I was told that if Jason needs 24/7, then he belong in a nursing home.
   >
   > Adele
   >
   > _____
   >
   > From: dmdpioneers@yahoogroups.com <dmdpioneers%40yahoogroups.com> [mailto:
   > dmdpioneers@yahoogroups.com <dmdpioneers%40yahoogroups.com>] On
   > Behalf Of Jim Gassen
   > Sent: Thursday, April 24, 2008 2:28 PM
   > To: dmdpioneers@yahoogroups.com <dmdpioneers%40yahoogroups.com>
   > Subject: Re: [DMD Pioneers] trying to start a co-op
   >
   > Greetings,
   >
   > I have been able to enjoy the best of both worlds. I have a trach and
   > people
   > other than my parents take care of me. I live in the lower level of my
   > house
   > independently with my wife. I have pa's 24/7 and my parents are upstairs
   > and
   > are close by in case emergencies or to provide backup care when there is a
   > problem with one of my workers.
   >
   > Jim
   > ----- Original Message -----
   > From: Josh Winheld
   > To: dmdpioneers@
<mailto:dmdpioneers%40yahoogroups.com<dmdpioneers%2540yahoogroups.com>>
   > yahoogroups.com
   > Sent: Friday, April 18, 2008 9:29 PM
   > Subject: Re: [DMD Pioneers] trying to start a co-op
   >
   > This is a concept I have often thought of, as I've always wanted to
   > live apart from my parents. However, if you have a trach and have
   > nursing care, the nurse is responsible for your care and his nursing
   > notes must reflect what he does for you during his shift. Hours can't
   > be transferred between people and it would be difficult to circumvent
   > the system.
   >
   > Of course, my own personal goal is to find a way to live on my own. I
   > would love to hear if anyone with a trach has done this.
   >
   > Josh
   >
   > --- In dmdpioneers@
<mailto:dmdpioneers%40yahoogroups.com<dmdpioneers%2540yahoogroups.com>>
   > yahoogroups.com,
   > "Adele" <jasona65@...> wrote:
   > >
   > > Thanks Jessica for that thought. We have to have our first meeting
   > of
   > > interested parents. Once we work out some of the details, we can
   > use
   > > something like that.
   > >
   > >
   > >
   > > Adele
   > >
   > >
   > >
   > > _____
   > >
   > > From: dmdpioneers@
<mailto:dmdpioneers%40yahoogroups.com<dmdpioneers%2540yahoogroups.com>>
   > yahoogroups.com
   > [mailto:dmdpioneers@
<mailto:dmdpioneers%40yahoogroups.com<dmdpioneers%2540yahoogroups.com>>
   > yahoogroups.com]
   > On
   > > Behalf Of Jessica Resnick-Ault
   > > Sent: Friday, April 18, 2008 4:25 PM
   > > To: dmdpioneers@
<mailto:dmdpioneers%40yahoogroups.com<dmdpioneers%2540yahoogroups.com>>
   > yahoogroups.com
   > > Subject: Re: [DMD Pioneers] trying to start a co-op
   > >
   > >
   > >
   > > It wouldn't work for us, for many, many, many reasons, but I
   > say "great" if
   > > it works for others.
   > > Have you looked at using google's calendar application to set up
   > the hours?
   > > You could have a public calendar that the members of your co-op
   > could
   > > access, and everyone could list schedules on there in different
   > colors.
   > > It might make things a little easier to manage.
   > > -Jess
   > >
   > > On 4/18/08, Adele <jasona65@verizon. <mailto:jasona65% <jasona65%25>
   > 40verizon.net> net>
   > > wrote:
   > > >
   > > > To all of you mom out there, this is something you all might want
   > to see
   > > > about setting up.
   > > >
   > > > A few of us parents with older guys, want to try to form a co-op
   > of care.
   > > > Some of us have paid care for most of the day, many of us do not
   > have many
   > > > hours of care. We like to be able to plan trading care with one
   > another.
   > > > We have a few parents in my area that have multiple adults with
   > DMD.
   > > > Caring
   > > > for more than one is just a little more time. When we have some
   > sort of a
   > > > working model, I'll share it all with you so that you also might
   > be able
   > > > to
   > > > set one up.
   > > >
   > > > If anyone has any ideas about this, I would be glad to hear them.
   > > >
   > > > We are looking into both, daytime and overnight care. The one mom
   > here,
   > > > not
   > > > only has two adult sons, but a fairly large home that can easily
   > sleep
   > > > about
   > > > her two plus 2 more. She also has a nice bathroom setup. She has a
   > > > whirlpool tube with a lift, so that we can even give "Spa
   > Treatments"
   > > >
   > > > Jason has availed himself a few times. Loved it! And don't think
   > we left
   > > > you Trach boys out. Her eldest is trached and he enjoys the spa
   > tub.
   > > >
   > > > Adele
   > > >
   > > > _____
   > > >
   > > > I am using the free version of SPAMfighter for private users.
   > > > It has removed 327 spam emails to date.
   > > > Paying users do not have this message in their emails.
   > > > Try SPAMfighter <http://www.spamfigh
   > <http://www.spamfigh <http://www.spamfighter.com/len> ter.com/len>
   > > ter.com/len> for free now!
   > > >
   > > > [Non-text portions of this message have been removed]
   > > >
   > > >
   > > >
   > >
   > > --
   > > *************************
   > > Jessica Resnick-Ault
   > > jrault@gmail. <mailto:jrault%40gmail.com <jrault%2540gmail.com>> com
   > > or
   > > jra@... <mailto:jra%40alumni.brown.edu <jra%2540alumni.brown.edu>> edu
   > >
   > > [Non-text portions of this message have been removed]
   > >
   > >
   > >
   > >
   > > _____
   > >
   > > I am using the free version of SPAMfighter for private users.
   > > It has removed 327 spam emails to date.
   > > Paying users do not have this message in their emails.
   > > Try SPAMfighter <http://www.spamfigh <http://www.spamfighter.com/len>
   > ter.com/len> for free now!
   > >
   > >
   > >
   > > [Non-text portions of this message have been removed]
   > >
   >
   > [Non-text portions of this message have been removed]
   >
   > _____
   >
   > I am using the free version of SPAMfighter for private users.
   > It has removed 348 spam emails to date.
   > Paying users do not have this message in their emails.
   > Try SPAMfighter <http://www.spamfighter.com/len> for free now!
   >
   > [Non-text portions of this message have been removed]
   >
   > [Non-text portions of this message have been removed]
   >
   >
   >

   --
   People, not commercial organizations or chains of command, are what make
   great civilizations work. Every civilization depends upon the quality of the
   individuals it produces."
   ---Children of Dune, by Frank Herbert

   [Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

ADAPT 2008  Survey and Rankings

Ten Best States–Five Honorable Mention
Ten Worst States–Five Dishonorable Mention
(Listed
in alphabetical order, not in ranked order)



Delivery
of Home and Community Services to People with DisabilitiesAnd Older Americans



TEN BEST STATES                   HONORABLE MENTION

Alaska                                                         Kansas
Colorado                                                    New York
Maine                                                          Washington
Massachusetts                                         Wisconsin
Michigan                                                     Wyoming
Minnesota
New Hampshire
Oregon
Rhode Island
                  Vermont


TEN WORST STATES                       DISHONORABLE MENTION

Arkansas                                                             Alabama
Georgia                                                                District
of Columbia
Florida                                                                 New
Jersey
Illinois                                                                  Ohio
Indiana                                                               
Pennsylvania
Louisiana
Mississippi
North Dakota
Tennessee
Texas


SOURCES
and CRITERIA for Selection of ADAPT’s
10 BEST – 10 WORSTStates in the Provision
of
Home
and Community Services


                                    SOURCES of INFORMATION


Kaiser
Commission on Medicaid and the Uninsured
“Medicaid
Home and Community-Based Service Programs:
Data
Update” – December 2007

Universityof Minnesota – Research and Training Center on Community Living –
Institute on Community Integration/UCEDD
“Residential
Services for Persons with Developmental Disabilities:
Status
and Trends Through 2006” – Published August 2007

Thomson
Healthcare
“Medicaid
Long-Term Care Expenditures in FY 2006”
“Medicaid
HCBS Waiver Expenditures, FY2001 –FY2006”

The
ADAPT Community
“ADAPT
Community Home and Community Services State Survey 2008 – Advocate Assessment”



                                                 CRITERIA

1.  Rank based on % of Institution Spending
versus Community Spending

2.  Nursing Facility Services Spending Per Capita

3.  Home and Community Based Services (HCBS)
Spending Per Capita

4.  Number of “Intermediate Care Facilities for
the Mentally Retarded”
(ICF-MR)
with 16 or more beds

5.  % of Population with Developmental
Disabilities Served in ICF-MR

6.  ICF-MR Per Capita Spending

7.  # of People with Developmental Disabilities
in Nursing Facilities

8.  HCBS + Personal Care Option + Home Health
Total Per Capita Spending

9.  Wages paid to community attendants

10.
# of Large Publicly Funded Institutions, and Their Population

11.  ADAPT Stakeholder Survey

                              ****************************
The
ADAPT Community listing of the 10 Best – 10 Worst States for home and community
services takes the above sources and criteria and evaluates the states for how
well they rank against other states in the country.  Though they are not ranked
numerically
(1,2,3…) the ADAPT list gives a good picture of where they are today.

No
state is ideal.  No state is all bad.
This is simply a current snapshot using information that is available through
public sources.

For
more information contact; The ADAPT Community                                   
bob.adapt@...


      
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[Non-text portions of this message have been removed]