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RE: Digest Number 2015

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I think alot of it depends on what part of the country you live in. Here in

the Northwest just about every kid with DS I know that is coming out of High

School will be employed. We live in a county with the highest rate of

employment for people with DD. Many of our folks will not be completely

independant, but most will have greater independance than the previous

generation. It's

not perfect, but it will still save the taxpayers money in the long run to

educate our kids. In this state it costs $150,000 a year to keep one person in

one of the 4 institutions. Many people who live in these places are no

different from our kids. It's a whole lot cheaper to allow people to live and

function in the community-- plus it's just better for everyone. Many of our

kids

will need some support in the future, by investing in education while they are

young, the future is much brighter for our kids.

There are ways to both retain SSI, SSDI and work. PASS, ERWE plans as well

as the new ticket to work programs allow many people who have been unemployable

in the past to have jobs. Some medicaid waiver plans have employment

services as an option. The goal of High School transition should be focused on

getting our kids jobs. Employment isn't just about paying taxes (although that

is a

great reason!) It is also about dignity.

So why is it not happening? It's not the result of failure of the individuals

with DD-- but at the legislative level. Mostly because it takes alot of

educating and advocating at both the federal and state level to build a system

that

works well.

Our local advocacy groups regularly put employment in front of our

legislators. They are now seeing the results of their investments. At our

advocacy

forum we pulled out a banner with over 250 companies that employ people with

Developmental Disabilities. It was a great plug for the companies, and a

powerful

piece of education. We always have employed people with DD there to meet

their legislators and tell about their jobs-- and how much they appreciate them.

Our state DD system now has it in their plan that the expectation will be

that EVERY person with DD will have a job. There will be those that will be

difficult to serve, but the expectation will be that they work. Sheltered work

is also on its way out the door.

For those of you with younger kids--- NOW is the time to start thinking and

advocating for the future.. Transition comes way too fast, and it takes a lot

of planning. Our kids future will be bright if we do our homework :-)

BTW, I have been asking employment service organizations, in preparation for

my own daughters transition, What is the skill she needs most to be

employed.... Over and over again they say, the most difficult things to

overcome are

social skill deficiancies--- not whether she can read or not. That has been my

main motivating reason to keep her included in her neighborhood school!

M.

In a message dated 1/3/04 3:57:42 PM, writes:

<< Subject: Economics of Education - adult outcomes

It is commonly put forth that educating our children with DS will make

them productive tax paying adults rather than people who must be

supported for a lifetime by the state in group homes and day probrams.

This is an optimistic view, but before you carry it too far, one needs

to look at the success so far. It is clear that education has made our

children less expensive to society as adults. It is clear that a few

adults with down syndrome do hold jobs and are taxpayers.

What is clear to me is that generally, we haven't succeeded as well as

we'd hoped. Our young adults are very, very different from those a

generation ahead of them. Most can read and write. Their adult

outcomes are generally quite different in terms of their participating

in society, but relatively few have hit the achievement marks we had

hoped for. Now it is possible that the next crop of kids will be

significantly different, but the results today are guarded.

Of the young adults with DS that I know, only a few have what I'd term

real jobs. Of those, many are in special environments (working for an

agency or 'token' employees in industry). Many others have volunteer

jobs, classes, or other day activities. I would suggest that the

majority of adults are on SSI or SSDI. Again, very few are living

independently, although there is a wide range of living arrangements

including group homes, families, and independent apartments of various

levels.

Almost all of the young adults I know are much more integrated into

their communities and taking part in the life of their communities than

those of the generation ahead of them, so great progress has been made

there.

I have no doubt as to the benefits of education, but it will take a very

careful study to quantify whether there is economic benefit to the

community or rather a great social benefit from having this diverse

population there and taking part. I'm sure that this new generation of

adults is less costly to society than the previous one, but that needs

to be carefully quantified.

Rick ... dad to one of those young adults with ds

p.s. at the high school level, I thought Jan would have no trouble being

employable .. but I've learned a lot from her and others over the

following years.

>>

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In a message dated 1/3/2004 10:03:35 PM Eastern Standard Time,

muracat@... writes:

For those of you with younger kids--- NOW is the time to start thinking and

advocating for the future.. Transition comes way too fast, and it takes a lot

of planning. Our kids future will be bright if we do our homework :-)

I couldn't agree with you more !! Parents need to be active, involved

and informed! We too have many young adults with DS employed...but most of the

time that is due to the efforts of the parents, not the results of school

based programs. Our school systems are recognizing the flaws in their systems

and are currently working to revise and improve their transition programs in an

effort to improve the outcomes. Having students that are more literate and

with appropriate social skills is adding to the success of those students as

well as the programs. Each generation of students that have been offered more

educational opportunities are gaining more and more of those skills. Parents as

well as educators need to keep expectations raised to keep those skill levels

rising too.

Cheryl in VA

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  • 4 months later...
Guest guest

Hey everyone, This is Laurie from Dr. Goldberg's office. I've heard the

rumors that Dr. Goldberg is not accepting new patient's. The deal is that we

have a waiting list. We are trying to do the best we can and get everyone in

to see him as soon as we can. We possibly may also be getting a nurse

practitioner in the near future to help him see new patients (under his

supervision of course). So if you are interested, please contact the office

directly for information about getting onto the list. Thanks Have A Great

Day!!! Laurie

Digest Number 2015

There are 17 messages in this issue.

Topics in this digest:

1. alternative to Dr. G in Chicago area?

From: " gonk " <lmsiegel@...>

2. Re: OT

From: " Diane " <diane@...>

3. Re: alternative to Dr. G in Chicago area?

From: Shenko <jankevus@...>

4. Question for Kathy regarding ketogenic diet and kids

From: Caroline Glover <sfglover@...>

5. 2nd son with ASD-thank you

From: " & Becky " <beckeric@...>

6. Re: 2nd son with ASD-thank you

From: karen ravitz <klmrav4@...>

7. Re: 2nd son with ASD-thank you

From: " stocmom " <stocmom@...>

8. Re: Re: Recent Lab Results and Your Input

From: <thecolemans4@...>

9. Reminder - On-line Chat

From:

10. Fwd: Question re Restless Leg Syndrome

From: rhemary@...

11. Tax accountant

From: worryfree97 <worryfree97@...>

12. Re: Tax accountant

From: nechapasi@...

13. Re: Tax accountant

From: warrenlea@...

14. MycoplasmaRegistryReports-studies: Ear infections 'linked to

asthma' & Mycoplasma / May Cause or Worsen Asthma Attacks in Children

From: mycoreg@...

15. CA residents: favor requested

From: steve and doris smith <sjsmith3@...>

16. Fwd: Question re Restless Leg Syndrome

From: rhemary@...

17. Re: CA residents: favor requested

From: Coalition <nidslistmods@...>

________________________________________________________________________

________________________________________________________________________

===CONTENTS OF DIGEST TRUNCATED===

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  • 9 months later...
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In a message dated 3/3/05 8:18:02 AM Eastern Standard Time,

writes:

> Date: Wed, 2 Mar 2005 11:18:37 -0600

> From: " bob smith " <rresmith@...>

> Subject: Re: Flaxseed Oil

>

> Barleans sells to anyone with Cancer for $16.25 (low lignan) . They also

> sell both of Budwigs books at a big discount. They pay shipping on orders

over

> $80.00. If one uses the minimum advised this is not an oversupply. Do not

> get the high lignan. It is better to get the lignans from grinding the seed

> daily. Bob

>

..

..>>> Barlean's are also responsible for the translation of two of Budwig's

books into English.

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  • 1 year later...
Guest guest

You know the treatment was miserable until I started two things, grapefruit seed extract and Penta water. I feel completely normal if I keep those two items up. I hope I've given some of you on treatment a little help. Vicki

> Date: Fri, 31 Mar 2006 12:55:44 +0000> From: > > Subject: [ ] Digest Number 2015> > There are 6 messages in this issue.> > Topics in this digest:> > 1. hi again everyone> From: ann <agann_01@...>> 2. Re: hi again everyone> From: Janet <jfw4359@...>> 3. Re: hi again everyone> From: Sharon Zeis <szeis_1@...>> 4. Re: hi again everyone> From: " Davies" <davies@...>> 5. Re: undetected> From: <royaltyjack@...>> 6. my husband is about to start treatmen he is a ex heroin addict i am worried!!!> From: "littlecor69" <littlecor69@...>> > > ________________________________________________________________________> ________________________________________________________________________> > Message: 1 > Date: Thu, 30 Mar 2006 07:11:14 -0800 (PST)> From: ann <agann_01@...>> Subject: hi again everyone> > Hi all,> > This is mostly in response to Janets inquiry as to> whether we werent posting anymore. I think the answer> is alot of us sort of sit back and read and dont> always have something to say...but, bellieve me, I ,> and Im sure many others read posts daily and learn so> much from this group. Yes, often it is bantor between> two or three people, but thats fine too. I for one am> glad to be a part of this group, if mostly silent.> > I am a realapser (after peg-interferon and ribivarin> 48 weeks). I was clear at 6 weeks and at 12. After> dropping alot of weight , they reduced my treatment> and (in my opinion and that of Dr Ben Cecil and my new> specialist) that may have been the problem. Treatment> should have continued or maintained the level. But,> either way, Im now seeing a ID specialist in Sarasota> FL who does clinical trials . (On the web they are> Bach & Gadafsky). I go back in April to see what /if I> will start treatment or a trial. My VL is 4 mil but,> as of last year I had very little fibrosis, so they> tell me I have time. > > Though Im not too symptomatic, its an emotional> rollercoaster, as you all know,, deciding whether to> go thru it all again. Im not willing to sit back and> wait for "the cure" so will likely start again. > > Sigh, Im a Leo (see I have been reading, and> Liz) and have been thru infertility treatments and> still never sufferred depression til this monster came> out and grabbed me. > > Im here, :) Ann> > __________________________________________________> Do You ?> Tired of spam? has the best spam protection around > http://mail. > > > ________________________________________________________________________> ________________________________________________________________________> > Message: 2 > Date: Thu, 30 Mar 2006 10:07:03 -0800 (PST)> From: Janet <jfw4359@...>> Subject: Re: hi again everyone> > Ann it is nice hearing from you..I can't remember if I ever saw youon here before..LOL..Blame it on CRS!! I'm sure you will do fine with TX again..I haven't been to my Hep Dr in a long time..Guess I'm too scared to go..I dunno what it is,..I do knowit is active again due to the symptoms I have been having for a while now..I did not do good with TX>>Bout lost my mind so I took myself off of it..I was in remission as they say back then but I know it is backj up..Last enzyme count I had it was UP!! That's another reason I have not gone back!! Get in touch when ya want..We are all here lurking!!> > ann <agann_01@...> wrote: Hi all,> > This is mostly in response to Janets inquiry as to> whether we werent posting anymore. I think the answer> is alot of us sort of sit back and read and dont> always have something to say...but, bellieve me, I ,> and Im sure many others read posts daily and learn so> much from this group. Yes, often it is bantor between> two or three people, but thats fine too. I for one am> glad to be a part of this group, if mostly silent.> > I am a realapser (after peg-interferon and ribivarin> 48 weeks). I was clear at 6 weeks and at 12. After> dropping alot of weight , they reduced my treatment> and (in my opinion and that of Dr Ben Cecil and my new> specialist) that may have been the problem. Treatment> should have continued or maintained the level. But,> either way, Im now seeing a ID specialist in Sarasota> FL who does clinical trials . (On the web they are> Bach & Gadafsky). I go back in April to see what /if I> will start treatment or a trial. My VL is 4 mil but,> as of last year I had very little fibrosis, so they> tell me I have time. > > Though Im not too symptomatic, its an emotional> rollercoaster, as you all know,, deciding whether to> go thru it all again. Im not willing to sit back and> wait for "the cure" so will likely start again. > > Sigh, Im a Leo (see I have been reading, and> Liz) and have been thru infertility treatments and> still never sufferred depression til this monster came> out and grabbed me. > > Im here, :) Ann> > __________________________________________________> Do You ?> Tired of spam? has the best spam protection around > http://mail. > > > ---------------------------------> ! GROUPS LINKS > > > Visit your group " " on the web.> > To unsubscribe from this group, send an email to:> -unsubscribe > > Your use of is subject to the Terms of Service. > > > ---------------------------------> > > > > > > Jan > > > ---------------------------------> Blab-away for as little as 1ยข/min. Make PC-to-Phone Calls using Messenger with Voice.> > [This message contained attachments]> > > > ________________________________________________________________________> ________________________________________________________________________> > Message: 3 > Date: Thu, 30 Mar 2006 15:27:11 -0800 (PST)> From: Sharon Zeis <szeis_1@...>> Subject: Re: hi again everyone> > Hey Ann. As much as I don't want to ever do treatment> again, I would if necessary. Glad to know your here. I> always compared the disease and treatment to a roller> coaster ride too. And I HATE roller coasters. Luckily,> 3 1/2 years after treatment I'm still undetectable.> Was re-checked last week.> Sharon> > --- ann <agann_01@...> wrote:> > > Hi all,> > > > This is mostly in response to Janets inquiry as to> > whether we werent posting anymore. I think the> > answer> > is alot of us sort of sit back and read and dont> > always have something to say...but, bellieve me, I ,> > and Im sure many others read posts daily and learn> > so> > much from this group. Yes, often it is bantor> > between> > two or three people, but thats fine too. I for one> > am> > glad to be a part of this group, if mostly silent.> > > > I am a realapser (after peg-interferon and ribivarin> > 48 weeks). I was clear at 6 weeks and at 12. After> > dropping alot of weight , they reduced my treatment> > and (in my opinion and that of Dr Ben Cecil and my> > new> > specialist) that may have been the problem.> > Treatment> > should have continued or maintained the level. But,> > either way, Im now seeing a ID specialist in> > Sarasota> > FL who does clinical trials . (On the web they are> > Bach & Gadafsky). I go back in April to see what /if> > I> > will start treatment or a trial. My VL is 4 mil but,> > as of last year I had very little fibrosis, so they> > tell me I have time. > > > > Though Im not too symptomatic, its an emotional> > rollercoaster, as you all know,, deciding whether to> > go thru it all again. Im not willing to sit back and> > wait for "the cure" so will likely start again. > > > > Sigh, Im a Leo (see I have been reading, and> > Liz) and have been thru infertility treatments and> > still never sufferred depression til this monster> > came> > out and grabbed me. > > > > Im here, :) Ann> > > > __________________________________________________> > Do You ?> > Tired of spam? has the best spam> > protection around > > http://mail. > > > > > __________________________________________________> Do You ?> Tired of spam? has the best spam protection around > http://mail. > > > ________________________________________________________________________> ________________________________________________________________________> > Message: 4 > Date: Thu, 30 Mar 2006 16:29:07 -0700 (Mountain Standard Time)> From: " Davies" <davies@...>> Subject: Re: hi again everyone> > Ann,> > Hey Sweetie,> > I know right where you are at, or at least pretty close. I did treatment 3> and half years ago - cleared in 11 weeks, viral load was never over a> million - geno 1a. I have been clear for over 1 year and half and somewhere> in the last 6 months I came out of remission - bummer - as you all know.> > Although I didn't handle treatment well at all, I know I had every side> affect and then I think I found some new ones... LOL but true.> > Anyway, I just found out that it has come back with a vengeance, when I> started TX before, I was stage 1 grade 1, and now in 6 months time I am> stage 2 and grade 3.... Scarry as I don't drink or do drugs... I do smoke> cigs, however.> > I am like you - I am not going to sit around and wait for a cure, in fact I> don't think I have the time to do so.> > But now I have lost my insurance, couldn't afford the cobra 399,00 a moth,> and was taken off work almost 8 weeks ago, I am going broke quickly. I used> most of what I had saved to move out here to Denver 7 months ago to oversee> my Mothers care- she is in an assisted living and is slowly dying. I> thought I should come out and be with her.> > Nonetheless - all my kids are grown, 2 in college and one is married, so I> have no dependants, therefore I can't get help from Social Services. I went> and filed SSD today but they said 4 to 6 months.> > I don't even know how I am going to do treatment , let alone stay and handle> bills, but someway, and God willing - I will make it.> > Just wanted to say Hello to you and let you know, someone else is out there> getting ready to try again too...> > My love, hugs and prayers> > May God Bless you all> > Marie > > > > -- my husband is about to start treatmen he is a ex heroin addict i am worried!!!> > Hi all> I am just concerned my husband got hep c from his drug use he is going > to start treatment in two days he is currently on methadone and abuses > his methadone, he also uses vicodin and percocet. I was reading in the > pamplets that side effects are drug use and overdose. I don't want him > to relapse and start using again any suggestions or comments i would > greatly appreciate. > Thanks > SCV> > > > > > ________________________________________________________________________> ________________________________________________________________________> > > > ------------------------------------------------------------------------> > > <*> To visit your group on the web, go to:> /> > <*> To unsubscribe from this group, send an email to:> -unsubscribe > > <*> Your use of is subject to:> > > ------------------------------------------------------------------------> > >

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