Re: MDA Bans Volunteers With Muscular Dystrophy, Judge Says

[Guest guest]

Chad~

MDA sure has a way with the children called " Jerry's Kids " when our

childhood years we get looked at as a poor suffering child who's gonna

die...blah, blah, then we get to be 18 and want to still have fun at camp

they are saying no? Didn't Janeal go back as an attendant, so did a few

others from our generation of camper. You must just not be cute enough

for hugg patrol!! lol I AM kidding!!

Its sad elders cannot have a good, fun camp to go to. Just because we

turn 18 we no longer can enjoy a good thing!! Mabe you & I should do a MN

MDA CAMP ROUNDUP!! wanna?

Jodi & Maggie May (service dog)

[Guest guest]

Makes good sense!

[Guest guest]

I agree with Jenn. If you can't do the job, you shouldn't be hired. That goes

for any job, paying or volunteer. Should a person be hired for a job just

because they're a certain color or religion? Should you be hired just because

you're disabled? No, you're hired because you're qualified. There are other

volunteer jobs that don't involve lifting. Go for those.

[Guest guest]

I'm curious if the ruling was made based on diagnosis or functional limitation.

The later would be truer to the intent of the ADA.

Re: MDA Bans Volunteers With Muscular Dystrophy, Judge

Says

I agree with Jenn. If you can't do the job, you shouldn't be hired. That goes

for any job, paying or volunteer. Should a person be hired for a job just

because they're a certain color or religion? Should you be hired just because

you're disabled? No, you're hired because you're qualified. There are other

volunteer jobs that don't involve lifting. Go for those.

[Guest guest]

>There are other

> volunteer jobs that don't involve lifting.

You're exactly right, there are volunteer jobs that dont include lifting at

MDA camp. There were disabled volunteers when I went to camp. Sports

director, arts and crafts, and others. Not hiring someone because they can't

lift in an emergency is just stupid. You don't need to be able to lift to

volunteer at camp.

Re: MDA Bans Volunteers With Muscular Dystrophy, Judge

Says

> I agree with Jenn. If you can't do the job, you shouldn't be hired. That

goes

> for any job, paying or volunteer. Should a person be hired for a job just

> because they're a certain color or religion? Should you be hired just

because

> you're disabled? No, you're hired because you're qualified. There are

other

> volunteer jobs that don't involve lifting. Go for those.

>

>

>

>

>

[Guest guest]

I agree, i think it is ridicules that they would not allow those two women to

be some sort of counselors at camp. It is very true that there are so many

other things that they could have helped out with at camp. I still go to MDA

camp, and being 19 I don't participate in many of the activities, but I normally

help with the younger campers.

And i can understand if MDA did not want to supply them with 'personal care'

for the week, but it seems that if these women really wanted to be there

(which they obviously did, considering it was brought to court), then they could

have found a way to provide their own care.

Plus, in reference to the need for 'emergency' lifting, there are normally at

least 3 extra counselors at any given moment around a camper, I do not think

that it would have been a big issue.

[Guest guest]

wrote:

> You're exactly right, there are volunteer jobs that dont include

> lifting at

> MDA camp. There were disabled volunteers when I went to camp. Sports

> director, arts and crafts, and others. Not hiring someone because they

> can't

> lift in an emergency is just stupid. You don't need to be able to lift to

> volunteer at camp.

But who was going to provide *their* personal care while at camp? Did

they expect MDA to provide them with that so they could volunteer?

You might not need to be able to lift kids under normal circumstances,

but in emergencies - which was their concern - the inability to lift

kids might indeed be an issue.

[Guest guest]

As a mom of a child with SMA, I have to say how good it would be for my

child, I think, to see an adult with SMA in a counsellor role. So you

can't lift. There's got to be other things you could do - maybe MDA

needs to expand their idea of what the camp personnel job descriptions

should be - maybe some 'mentors' along with counsellors.

When our first was diagnosed, it was very helpful to us to have a

disabled social worker (a paraplegic) assigned to our case. There was

more validity and meaning to what she said because she had been there.

Bettylou

[Guest guest]

I don't think they wanted MDA to provide their care, the disabled volunteers

I knew always brought their own caregivers. I still don't see why they would

be needed to lift. There are plenty of volunteers who can

Re: MDA Bans Volunteers With Muscular Dystrophy, Judge

Says

> wrote:

>

> > You're exactly right, there are volunteer jobs that dont include

> > lifting at

> > MDA camp. There were disabled volunteers when I went to camp. Sports

> > director, arts and crafts, and others. Not hiring someone because they

> > can't

> > lift in an emergency is just stupid. You don't need to be able to lift

to

> > volunteer at camp.

>

> But who was going to provide *their* personal care while at camp? Did

> they expect MDA to provide them with that so they could volunteer?

>

> You might not need to be able to lift kids under normal circumstances,

> but in emergencies - which was their concern - the inability to lift

> kids might indeed be an issue.

>

>

>

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[Guest guest]

One possible explanation for this ban by MDA could be the liability

insurance policy required to cover the camp volunteers and staff.

To try to cover volunteers that could not lift campers may have

prevented obtaining liability coverage for all the others, or have

made the policy cost unaffordable. Insurance policies can have some

strange requirements. Unfortunately, there are plenty of lawyers

and family members that will sue everyone in sight if

some " accident " or mishap occurs involving a camper. Just a

thought.

> I don't think they wanted MDA to provide their care, the disabled

volunteers

> I knew always brought their own caregivers. I still don't see why

they would

> be needed to lift. There are plenty of volunteers who can

>

[Guest guest]

I will restate my opinion I expressed in the Orginal message and

clarify it alittle

I applied to MDA Camp as staff again this year and was

ultimitly denied a couple of days ago now, MDA cited my inability to

lift and preform the functions of the job,

The problem I Have with this is unlike some people of the people

with MD who have applied to MDA Camp, I can Walk and am phiscally

able to lift and preform the nessesary dutys. and I do not need the

use of a attendant or PCA myself I do everything independatly (For

right now anyway)But they STILL say I cant go, this is what do not

get and I believe to be WRONG.

What a world we live in When we have MD and the MDA Assosiation

refuses to allow people inflicted with MD to attend MDA Camp as Staff

even in a minor role of being a mentor or plan activitys or such to

be role models (Go Figure)

Chad Rath

Coon Rapids, MN

[Guest guest]

I was wondering about that too. I remember when I still went to camp,

one of the camp counselors from the year before came for a visit on

leave for a couple days from the army. When the director found out he

was there, she told him he had to leave because he hadn't completed the

proper paperwork, and it could've affected their liability coverage.

Maybe their rates would've went up significantly if they hired these two

volunteers. I know that when you add me to health and life insurance

policies, the costs quadruples at best.

Jenn

rwlewis8 wrote:

> One possible explanation for this ban by MDA could be the liability

> insurance policy required to cover the camp volunteers and staff.

> To try to cover volunteers that could not lift campers may have

> prevented obtaining liability coverage for all the others, or have

> made the policy cost unaffordable. Insurance policies can have some

> strange requirements. Unfortunately, there are plenty of lawyers

> and family members that will sue everyone in sight if

> some " accident " or mishap occurs involving a camper. Just a

> thought.

[Guest guest]

This is crazy. Should people with disabilities be excluded from all

jobs since it just costs too much for liability, health and life

insurance policies? I'm so sick of feeling like a burden, and it's

stupid. We are not the problem, it's them. It's MDA that is disabled

(with either their discrimination - this guy Chad says he could lift, do

everything, and do the job and still was excluded OR their greed - from

what you're saying, excluding people because it's too expensive.) AGH.

The idea of even groups designed to help us, jobs, states, families,

turning us away because it's too expensive, makes me sick.

Nick

Malatesta wrote:

> I was wondering about that too. I remember when I still went to camp,

> one of the camp counselors from the year before came for a visit on

> leave for a couple days from the army. When the director found out he

> was there, she told him he had to leave because he hadn't completed the

> proper paperwork, and it could've affected their liability coverage.

> Maybe their rates would've went up significantly if they hired these two

> volunteers. I know that when you add me to health and life insurance

> policies, the costs quadruples at best.

>

> Jenn

>

> rwlewis8 wrote:

>

> > One possible explanation for this ban by MDA could be the liability

> > insurance policy required to cover the camp volunteers and staff.

> > To try to cover volunteers that could not lift campers may have

> > prevented obtaining liability coverage for all the others, or have

> > made the policy cost unaffordable. Insurance policies can have some

> > strange requirements. Unfortunately, there are plenty of lawyers

> > and family members that will sue everyone in sight if

> > some " accident " or mishap occurs involving a camper. Just a

> > thought.

>

[Guest guest]

Boy, I am with you 100%, Nick. MDA of ALL places should see and value our

worth as human beings AND find it worth their while to assist us in

assisting others with MD. The problem really lies in that people with MD

are so used to be treated this way that for the most part, we accept it and

rationalize it as a way of life and do not fight it. Only a very few see

how wrong it is and are willing to fight so most of the injustice and

discrimination that happens goes by unnoticed. And of course there is

always the priority issue of how MDA chooses to allocate funds, they¹ve

shown over and over that ppl with MD are not their highest priority so this

is not a big surprise, but again being blinded by oppression most people

with MD and even the parents often don¹t see it as we are trained to be

grateful for any crumbs offered.

On 4/24/04 10:20 PM, " Nick Dupree " <nickdupree@...> wrote:

> This is crazy. Should people with disabilities be excluded from all

> jobs since it just costs too much for liability, health and life

> insurance policies? I'm so sick of feeling like a burden, and it's

> stupid. We are not the problem, it's them. It's MDA that is disabled

> (with either their discrimination - this guy Chad says he could lift, do

> everything, and do the job and still was excluded OR their greed - from

> what you're saying, excluding people because it's too expensive.) AGH.

> The idea of even groups designed to help us, jobs, states, families,

> turning us away because it's too expensive, makes me sick.

>

>

>

> Nick

>

>

> Malatesta wrote:

>

>> I was wondering about that too. I remember when I still went to camp,

>> one of the camp counselors from the year before came for a visit on

>> leave for a couple days from the army. When the director found out he

>> was there, she told him he had to leave because he hadn't completed the

>> proper paperwork, and it could've affected their liability coverage.

>> Maybe their rates would've went up significantly if they hired these two

>> volunteers. I know that when you add me to health and life insurance

>> policies, the costs quadruples at best.

>>

>> Jenn

>>

>> rwlewis8 wrote:

>>

>>> One possible explanation for this ban by MDA could be the liability

>>> insurance policy required to cover the camp volunteers and staff.

>>> To try to cover volunteers that could not lift campers may have

>>> prevented obtaining liability coverage for all the others, or have

>>> made the policy cost unaffordable. Insurance policies can have some

>>> strange requirements. Unfortunately, there are plenty of lawyers

>>> and family members that will sue everyone in sight if

>>> some " accident " or mishap occurs involving a camper. Just a

>>> thought.

>>

>

>

>

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..) may

> occur occasionally in emails. Over use of inappropriate language will

> not be allowed. If your under 16 ask your parents/gaurdian before you

> join the list.

>

> * No SPAMMING or sending numerous emails unrelated to the topics of

> spinal muscular atrophy, health, and the daily issues of the disabled.

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> List manager: (Sexy Mature Artist) Email: Esma1999@...

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>

>

>

>

>

>

>

>

[Guest guest]

it is illegal for public entities in the u.s. to discriminate against

people with disabilities, even if we cost more to accommodate, whether the

discriminating agent is a non-profit or not. under the ADA the burden of

proof is on the employer or organization that is denying access to prove

that providing that access would cause " undue hardship " . if chad can

perform the " essential functions " of the job, with or without " reasonable

accommodation " , and MDA is denying his participation in a volunteer program

based on his diagnosis, he may choose to file a complaint with the

department of justice and ask that they mediate and/or make a ruling about

whether or not he can perform the " essential functions " of the job and if

allowing him to volunteer indeed causes " undue hardship " to MDA.

i am amazed by how many people on this list have been so quick to assume

that a) chad can't do the work, that wanting to volunteer at summer camp

means that one is unwilling grow up and pay for there own vacation, and c)

without any having any facts, presume that MDA's liability carrier was

going to raise rates prohibitively.

chad, i'm sorry you we're denied this volunteer opportunity, and i hope

that if you choose to fight the decision that you find a place as a

volunteer at the camp were your skills and caring are appreciated. if you

don't fight or don't win, i hope you find a less paternalistic organization

to serve that is better committed to preserving and promoting the civil

rights for which so many of us have fought and continue to fight.

in solidarity,

alana

[Guest guest]

I agree with Alana 100%. I am appalled that so many of the members

in this group " assimilate " the idea that " we " are just not fit, or

too expensive, for somethings. I completely understand that there

are tasks we cannot complete but Chad was not volunteering as a

construction worker for crying out loud. Furthermore, it saddens me

to see that some ignored the true meaning of his intentions and

called his motivation to serve as a volunteer counselor, in my

opinion a role model to those with MD, an attempt to get a free

vacation or an inability to grow up. Chad explained that he can

perform the duties of the position and even if reasonable

accomodations were required, then he is entitled to them. It is

amazing that MDA would discriminate against those who it pledges to

serve!

Chad, I am also sorry that you were denied the opportunity to serve

as a counselor. It is truly wonderful of you to volunteer your

services that way. In my opinion you should fight their decision

and teach them a lesson. However, if you choose not to do so, I hope

you get the opportunity to render your services at a more

appreciative organization.

Respectfully,

na Arteta

> it is illegal for public entities in the u.s. to discriminate

against

> people with disabilities, even if we cost more to accommodate,

whether the

> discriminating agent is a non-profit or not. under the ADA the

burden of

> proof is on the employer or organization that is denying access to

prove

> that providing that access would cause " undue hardship " . if chad

can

> perform the " essential functions " of the job, with or

without " reasonable

> accommodation " , and MDA is denying his participation in a

volunteer program

> based on his diagnosis, he may choose to file a complaint with the

> department of justice and ask that they mediate and/or make a

ruling about

> whether or not he can perform the " essential functions " of the job

and if

> allowing him to volunteer indeed causes " undue hardship " to MDA.

>

> i am amazed by how many people on this list have been so quick to

assume

> that a) chad can't do the work, that wanting to volunteer at

summer camp

> means that one is unwilling grow up and pay for there own

vacation, and c)

> without any having any facts, presume that MDA's liability carrier

was

> going to raise rates prohibitively.

>

> chad, i'm sorry you we're denied this volunteer opportunity, and i

hope

> that if you choose to fight the decision that you find a place as

a

> volunteer at the camp were your skills and caring are

appreciated. if you

> don't fight or don't win, i hope you find a less paternalistic

organization

> to serve that is better committed to preserving and promoting the

civil

> rights for which so many of us have fought and continue to fight.

>

> in solidarity,

> alana

[Guest guest]

Hello Everyone

And I would like to thank to alana and rosana for those kind words

Ok So feel the need for some background on me to show those out

there who I am, and fortunate enough to be able to do the things I

can for now, Please read all the way though.

My Name is Chad Rath I have SMA type 3, I am 6'0 ft

120lbs pictures of me and zoe are in the photos section

I am 25 yrs old and I live in Coon Rapids, MN I graduated Highschool

in 1997 and collage in 99' and 01' with a Degree in Radio and TV

Broadcasting and science among some others. and currently co-own a

Small Music Recording Company with a freind.

I have a 2 Year old Daughter Named Zoe Marie With my ex who has

CP. I am Single, I have Zoe every Sun-Thurs of every week by myself I

get no PCA work, and live compleatly on my own, I only recieve 4

Hours per week of Homemaking service that helps with laundry and

dishes ect.

I have a drivers Licsence, and I own my own car, albeit a old

one, I use no equipment for driving and can lift from the ground 75-

100 lbs, and I even hold a 2nd degree Black Belt in Karate my

limitations are I cannot walk up and down stairs and Its takes me a

min to get to my feet after sitting. things are and will continue to

get worse for me and have over the past few years but I am still very

capable for now.

I had always had a problem with MD every since I found out at age

12, at age 15 MDA Camp opened up my world and my eyes to others who

dealt with the same thing I did and most of whom had more serious

conditions, I relized I wasnt alone, and continued to go to camp

until age 21. I worked on making myself the best I could be

regardless of my MD still somewhat asshamed I never said I word about

my MD to any freind or aquaintences for along time but then I relized

the MD is not who we are and we need not be ashamed of ourselves in

anyway

I learned that through MDA Camp and without that who knows where

I'd be today.

You See I want to go back as staff, not for a vacation (Being

Staff is not a Vacation) Its alot of work the whole thing is to make

it enjoyaable for the Kids, not for yourself, I want to show those

kids what I learned and that people with MD or any disability can

make a difference, can go through life and make something of

themselves

Thats what life is about that anyone can do anything if you work

hard enough, and if you show that, expessially to disabled youngsters

then you may have just done more good than you can imagine.

Its not about Insurance, Vacations, Politics or even money Its

about doing whats right NO More No Less

Chad Rath

Coon Rapids, MN

[Guest guest]

Good answer.

[Guest guest]

In a message dated 4/25/2004 12:25:39 AM Eastern Standard Time,

nicoleroberts@... writes:

Boy, I am with you 100%, Nick. MDA of ALL places should see and value our

worth as human beings AND find it worth their while to assist us in

assisting others with MD.

This has nothing to do with a persons worth whatsoever! I don't understand

why you all can't see that.

*Amy*

Mother to Caitlyn Mae - born to heaven 3/26/98

Olivia Isabelle - born to earth 9/18/03

Wife to Will 11/03/95

http://community.webshots.com/user/blueyedaze

[Guest guest]

In a message dated 4/25/2004 9:45:24 PM Eastern Standard Time,

alrt@... writes:

it may or may not be about worth, but it is about discrimination -

discriminatory policies against a group of people will inevitability make

some members of that group feel undervalued.

How can you call it discrimination when the person isn't capable of meeting

the set standards of the position?

*Amy*

Mother to Caitlyn Mae - born to heaven 3/26/98

Olivia Isabelle - born to earth 9/18/03

Wife to Will 11/03/95

http://community.webshots.com/user/blueyedaze

[Guest guest]

it may or may not be about worth, but it is about discrimination -

discriminatory policies against a group of people will inevitability make

some members of that group feel undervalued.

At 09:22 PM 4/25/04 -0400, you wrote:

>This has nothing to do with a persons worth whatsoever! I don't understand

>why you all can't see that.

>

>

>

>*Amy*

>Mother to Caitlyn Mae - born to heaven 3/26/98

>Olivia Isabelle - born to earth 9/18/03

>Wife to Will 11/03/95

>http://community.webshots.com/user/blueyedaze

[Guest guest]

how can you be so sure someone is incapable of performing the essential

functions of a job after they stated that they can? are you judging chad

incapable of knowing what his abilities are?

At 11:45 PM 4/25/04 -0400, you wrote:

>How can you call it discrimination when the person isn't capable of meeting

>the set standards of the position?

>

>

>

>*Amy*

>Mother to Caitlyn Mae - born to heaven 3/26/98

>Olivia Isabelle - born to earth 9/18/03

>Wife to Will 11/03/95

>http://community.webshots.com/user/blueyedaze

[Guest guest]

Chad explained three times, he IS capable of meeting the demands of the

work. How is excluding him NOT obscene, ADA-violating discrimination?

Nick

>

>

> How can you call it discrimination when the person isn't capable of

> meeting

> the set standards of the position?

>

>

>

> *Amy*

> Mother to Caitlyn Mae - born to heaven 3/26/98

> Olivia Isabelle - born to earth 9/18/03

> Wife to Will 11/03/95

> http://community.webshots.com/user/blueyedaze

>

>

>

>

>

> ------------------------------------------------------------------------

> *

[Guest guest]

I don't see how lifting is a mandatory job function of every counselor

and volunteer. It doesn't make sense. In case of an emergency, only

designated people ought to be doing these things for safety purposes.

As far as the volunteer's needs, like any other job when an emergency

situation arises, they ought to provide their own help with a

previously set guideline of necessities and what the organization

would provide. Why is a volunteer summer camp for the disabled

position any different from a day-to-day job?

FYI, I neither support or oppose the decision of the court because I

truly believe there are too many things unasked and/or unanswered, and

each situation ought to be based on the individual case and position

when accepting or declining employees and volunteers.

> Chad explained three times, he IS capable of meeting the demands of the

> work. How is excluding him NOT obscene, ADA-violating discrimination?

>

> Nick

>

> >

> >

> > How can you call it discrimination when the person isn't capable of

> > meeting

> > the set standards of the position?

> >

> >

> >

> > *Amy*

> > Mother to Caitlyn Mae - born to heaven 3/26/98

> > Olivia Isabelle - born to earth 9/18/03

> > Wife to Will 11/03/95

> > http://community.webshots.com/user/blueyedaze

> >

> >

> >

> >

> >

> >

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

> > *

[Guest guest]

i think amy was referring to the 2 who went to court not chad...am i right

amy???

kimi