Re: Fw: NDSS Announces New Strategic Direction

[Guest guest]

This is great information, which I had not seen before. Thanks for sharing.

Sharla (Adam's Mom, 3)

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http://www.dsaction.com/content/view/59/137/ or at "Give Back America" at this link: http://www.givebackamerica.com/charity.php?b=132

This is a great way to donate and support others, especially as the holiday season approaches.You will find many popular retailers, such as Amazon, Department Stores, Wal-Mart, Target, etc. They will donate a percentage of your purchase to DS Action, which provides advocacy for individuals with Down syndrome. Please recommend these links to your friends.

From: Jon Colman and Joe Bockerstette <jcolmanndss (DOT) org>Subject: NDSS Announces New Strategic Direction"stpearson@sbcgloba l.net" <stpearson@sbcglobal .net>Date: Tuesday, March 3, 2009, 9:42 AM

The National Down Syndrome Society Is On A Mission To Enhance TheQuality Of Life For All People With Down Syndrome.

March 3, 2009 (New York, NY) The National Down Syndrome Society (NDSS), the national advocate for people with Down syndrome, announced a new mission and vision that incorporates a new strategic direction, a new logo, and a host of initiatives to support its commitment to being the national advocate for people with Down syndrome.

Effective immediately, the new mission and vision are: The mission of NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.

The new strategic direction will allow the organization to focus on key objectives that will grow the NDSS National Policy Center in DC, strengthen the national Buddy Walk® program with its affiliates, appoint a new leader to support community relations, and launch a new national public awareness strategy.

These strategic changes are designed to help NDSS advance its goals.

“Over the past 30 years, NDSS has benefited people with Down syndrome through national leadership in education, research and advocacy. Following an extensive study of the many unmet needs of families in the Down syndrome community, we have chosen a new mission and strategy that narrows our focus on the national advocacy for society’s acceptance of people with Down syndrome. We see achieving this mission as our community’s most important need.â€

For the past 30 years NDSS has worked in partnership with its affiliates to advance research, improve public policy and increase public resources, as well as develop and disseminate educational materials and programs. NDSS is governed by a 17-member Board of Directors comprised of self-advocates, affiliates, parents, professionals and community members from across the country. NDSS also benefits from the expertise of several advisory boards, including: Affiliate Advisory Board, Clinical Advisory Board, National Advisory Board, Self-Advocate Advisory Board, and the Science Advisory Board.

# # # Remove yourself from this mailing.Remove yourself from all mailings from National Down Syndrome Society.

[Guest guest]

I'm not against what NDSS does, but I'm not sure how much quality of

life is really an issue. Sure the lives of people with down syndrome

don't match up to the lives of those without, but that doesn't mean that

there isn't good quality of life. I am having some trouble with the

concept that this should be a focus issue without really defining where

the problems are. My view today is mostly through adults with down

syndrome and my experience is related to NY, CT and CA.

In the communities I live in, I don't see significant problems with

acceptance of people with down syndrome. They are out in public doing

things and are treated as respectfully as others. The big thing is to

have them out in public as themselves, not as a display or under the

thumbs of some supervisor.

California has a pretty good level of support for people with

developmental disabilities. One of the things they do is to measure the

quality of life of their clients, typically once in every three years.

It is private between the evaluator and the client unless the client

gives permission for others to see the evaluation (other than the

wrap-ups the state does to see how their programs serve the population).

Jan was measured last year. She gave permission for the evaluator to

talk to me and to send me a copy of the evaluation. The net is that

Jan's quality of life is excellent. I don't see a lot different as I

look around at the other adults I know who have a wide range of

capability, but not of enjoyment of life.

Now if you measure Jan by your own standards, she is in deep poverty at

least as measured by the standard of income. She lives alone (she

prefers it that way). Federal housing assistance caps her rent at 30%

of her social security income.

She spends two days a week in a sheltered worshop where she gets to hang

out with people like herself, do a little work from time to time, and

take classes that continue her development. She spends three full days

a week as a volunteer helping people more handicapped than herself. She

simply sees them as people and as a volunteer is often assigned to work

one-on-one with whomever is having a difficult day. The ASL she learned

in the workshop has been a great asset dealing with some of the hearing

and language impaired clients.

She has no car, but the transportation system for the elderly and

disabled works well when she needs it. It brings her to and from visits

with her parents on most weekends in a community where she is well known

and admired for her spirit and energy.

She shops for herself, living in a cash economy with withdrawals from

the bank that she does herself. She is comfortable in the grocery

store, Target, Walmart and the other stores in the large shopping center

near her apartment. She is financially independent. She bought her own

computer, TV, MP3 player, boom box, and many CDs and DVDs, even with a

limited budget. Sure she needs some life skills supervision, but maybe

I could use help like that if it were available.

After she came off my company medical coverage, she was eligible for

medicare and medicaid. That carried her through the end of her fight

with leukemia and her stem cell transplant. At the moment that isn't an

issue because she is healthy again and on no meds at all, but it is

there if she needs it.

No, she isn't married, but there was a real boyfriend. That fell apart

when the years of leukemia set in and he moved on to a new flame each

time she was hospitalized. When she came back he was there, but the

last time she simply sent him packing.

Each adult's story is different! Most of those I know have pretty good

quality of life. Sure there are problems, but problems hardly are

unique to people with down syndrome.

Perhaps the most important thing is that their life outcome is NOT the

same as we believe is the standard for people without down syndrome. It

isn't necessarily graduating from high school, a job, marriage, kids,

cars, houses, etc. That sequence seldom happens but should it be

expected? Being not the same isn't to say that it isn't just as good ..

sometimes better.

Rick .. dad to 35 year old Jan