Re: re: Fw: NDSS Announces New Strategic Direction

[Guest guest]

Rick,Thanks for this perspective - I always appreciate it when you share about Jan, it is very encouraging to me, especially as my son is coming up to transition into adulthood!blessings,Thirzamom to Tristan 15 (dx preB ALL 2/98 - 11 year survivor!) Abigail 7, Ella 5, 2 and Toby 5 months (golden retriever pup!)On Mar 4, 2009, at 2:02 AM, Rick Dill wrote: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

[Guest guest]

Rick,Love your posts. Always thought provoking.Personally, I think the NDSS does do lots of good things for DS. Although, my concern with the NDSS is that they seem to work in isolation from the affiliated groups. I would be curious who they got input from regarding the new mission and vision statements? It is definitely an improvement from DS "awareness," but not what I had hoped for. 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.From: Rick Dill <rdill@...>Subject: [ ] re: Fw: NDSS Announces New Strategic Direction"Leukemia" < >Date: Wednesday, March 4, 2009, 3:02 AM

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