Guest guest Posted December 28, 2005 Report Share Posted December 28, 2005 leis - i may be behind on my emails, but what did you take him in for? i can't remember! karen in dallas drs > well off we went to the dr today as i was worried about BJ going thru > puberty. > > Dr checked his chest/heart, nose, ears, touched his belly, looke dat his > back and his puibic area. Asked if he was having troubles going to the > toilet- I said no - not that I know of . > > His diagnosis: word for word quote here folks: > > He is going through life- good luck > > SO I am not impressed I am going to ring local hospital now and see if I > can't get him booked into a paed. I am sooooooooooooooooooooooooooooooo > pissed off right now. > > Off to make more toast for troops- on Day 6 of being home with 3 kids > and no daycare in sight for another 10 days. Sent DH off ot see a movie > so he has some him time. I am off for drinks with a firend tomorrow nite > after work. > > Chat soon guys > > -- > Aussie Leis- mum to BJ - 8yrs - Mad Crows fan!!, Natasha nearly 4 - my precious lil princess who can speak the legs off a chair and a table and 2 years- Spiderman Freak!! > A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort. > Herm Albright (1876 - 1944) > > > > > Click reply to all for messages to go to the list. Just hit reply for messages to go to the sender of the message. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 While we have dr.s in 's life who are very, very important I also question their ideas and make the final choices in his care. We have many drs so they don't always know the whys and whats of the other drs. in his life, and most of them haven't known him for years. I think the most important question I have learned to ask drs. when they want to run a test or do a procedure is 1. what will it tell us and 2. what would we do differently once we have that info? It is surprising how often the answer is that there isn't any treatment that would tolerate or that would be compatible with other things he is taking so doing the test doesn't present a possibility of helping in some way. When I ask this of the dr they usually realize this on their own and decide that the testing isn't appropriate. Karyn In a message dated 5/17/2007 6:58:12 A.M. Central Daylight Time, writes: My 2 cents on Drs: I do use caution with Dr's decisions on medication and invasive tests. The Drs are well meaning, but sometimes it is best to let things go and take care of it on its own. I know this doesn't work for everything, but I just want parents to know they have a choice not to take the Dr's advice. And you should always have the Drs expand on their advice and to discuss with you the bad consequences of taking or not taking their advice. B/C like us, doctors do make mistakes and react different to problems (too lax or too cautious). ________________________________ From: _@grouUpsNDo_ (mailto: ) [mailto:_@grouUpsNDo_ (mailto: ) ] On Behalf Of Rick Dill Sent: Tuesday, May 15, 2007 11:55 PM Upsndowns Subject: re: Disturbing doctors Ann Masch writes:>>>>>>>>> My basic attitude about doctors is that really they are nothing more or less then mechanics. They are able to help with the mechanics of our bodies-sometimes. This is not meant in any way to be disrespectful. They serve a useful purpose, so by Herzberg's rate of measure they get to live. [snip] <<<<<<<<<< Let me politely disagree. Our experience with doctors has generally been positive from the announcement by the OB and pediatrician that our daughter had down syndrome to the present. We have been treated respectfully and their advice has generally been extremely good. When, in her late 20's, Jan had a series of real life threatening diseases from pyoderma gangranosam (so rare it doesn't have a common name) to a stroke and AML which was put into remission and then recurred, finally cured by by bone marrow transplant. Let's step back. Roughly half our kids with down syndrome are born with heart defects which caused many, many to die young. Today the medical profession treats most of these successfully and the life span for those with down syndrome has taken leaps in the past quarter century. Sure there are doctors not adequately prepared to deal with all aspects of down syndrome, but that is true of many things since DS is usually only introduced in medical education in only a few lectures. My daughter took part in those lectures for about fifteen years at Yale medical school, showing the humanity of someone with down syndrome. There are areas of difficulty, particularly in some of the advice given to prospective parents that can lead to abortion when DS is suspected, but that is a small part of the really big picture. Rick .. dad to 34 year old Jan who spent her day as a volunteer helping adults more disabled than herself. :-) In honesty, I have to admit some conflict of interest. When Jan was 10, her Mom started med school. Now there is one more physician who understands down syndrome, though not as much as Jan. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2011 Report Share Posted April 5, 2011 Charlotte is right by the way, one can utilize DRS funds for job coaching and also receive Waiver funded services such as HBSSP... Forgot to add that to my earlier posting. Ellen Ellen Garber Bronfeld egskb@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2011 Report Share Posted April 5, 2011 I was told that if my daughter is receiving DRS funding when /if she finally receives HBCW- then she wud no longer be eligible for the DRS funding. We live in Will Co. Sincerely, Maher Sent via BlackBerry from T-Mobile DRS Charlotte is right by the way, one can utilize DRS funds for job coaching and also receive Waiver funded services such as HBSSP... Forgot to add that to my earlier posting. Ellen Ellen Garber Bronfeld egskb@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2011 Report Share Posted April 5, 2011 This is true until the state converts DRS programs to Medicaid Waiver programs and one by one programs are being converted to get the Federal dollars. Rubin SPECIAL NEEDS FUTURE PLANNING {The Law Offices of Rubin & Associates} Law practice limited to " future " & legal planning for Rubin's fellow Illinois families of children & adults with intellectual or developmental disabilities, & /or mental illness... (E) brian@... (W) www.SNFP.net (O) 847-279-7999 (F) 847-279-0090 (TF) 866-TO-RUBIN Member by invitation of SNA, Special Needs Alliance (www.specialneedsalliance.org association of experienced " Special Needs Planning " Attorneys (member of the SNA Board of Directors), as well as a member of NAELA, the National Academy of Elder Law Attorneys (www.NAELA.org), and serves on NAELA's Special Needs Law Section Steering Committee. Rubin has been awarded the dale Hubbell Peer Review Rating of AV Preeminent (www.martindale.com). PLEASE NOTE: Rubin is not in his office. This message was sent from his Blackberry. The information contained in this transmission is privileged, confidential, and intended only for the use of the individual or entity named above. If you are not the intended recipient, you are hereby notified that any disclosure, copying, distribution, or the taking of any action in reliance on the contents of this transmission is strictly prohibited. If you received this transmission in error, please notify Rubin by email, delete the message, and destroy and/or delete the original message and all copies. This message is not intended or written to be used, and may not be used, for the purpose of avoiding any penalties which may be imposed by the I.R.S. From: ELLEN BRONFELD [mailto:egskb@...] Sent: Tuesday, April 05, 2011 10:00 PM IPADDUnite <IPADDUnite > Subject: DRS Charlotte is right by the way, one can utilize DRS funds for job coaching and also receive Waiver funded services such as HBSSP... Forgot to add that to my earlier posting. Ellen Ellen Garber Bronfeld egskb@...<mailto:egskb%40sbcglobal.net> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2011 Report Share Posted April 6, 2011 , she cannot receive services from two waiver programs. The DRS Home Services Program and the DDD Home-Based Support Services Program are both waiver funded programs. The Voc Rehab program folks are talking about in this conversation is NOT a waiver funded program. It is run by DRS. So dog gone confusing. Charlotte From: IPADDUnite [mailto:IPADDUnite ] On Behalf Of kmaher229@... Sent: Tuesday, April 05, 2011 9:08 PM IPADDUnite Subject: Re: DRS I was told that if my daughter is receiving DRS funding when /if she finally receives HBCW- then she wud no longer be eligible for the DRS funding. We live in Will Co. Sincerely, Maher Sent via BlackBerry from T-Mobile DRS Charlotte is right by the way, one can utilize DRS funds for job coaching and also receive Waiver funded services such as HBSSP... Forgot to add that to my earlier posting. Ellen Ellen Garber Bronfeld egskb@... <mailto:egskb%40sbcglobal.net> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2011 Report Share Posted April 6, 2011 Thank you Charlotte. Is the voc program for adults?? Sincerely, Maher Sent via BlackBerry from T-Mobile DRS Charlotte is right by the way, one can utilize DRS funds for job coaching and also receive Waiver funded services such as HBSSP... Forgot to add that to my earlier posting. Ellen Ellen Garber Bronfeld egskb@... <mailto:egskb%40sbcglobal.net> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2011 Report Share Posted April 7, 2011 Hi, my name is Ludwig. I'm the Youth Services Coordinator at the DuPage Center for Independent Living, a resource and advocacy center for people with disabilities, and I also work closely with Don Davia at the Center. If you have any questions or concerns, please feel free to call, fax, or e-mail the Center via the contact information listed below. Much obliged, Ludwig Youth Services Coordinator DuPage Center for Independent Living 739 Roosevelt Road Building 8, Suite 109 Glen Ellyn, Illinois 60137 Phone: 630-469-2300 Fax: 630-469-2606 > > Thanks. Ellen, I can set this up. > > > From: Charlotte Cronin > Sent: Thursday, April 07, 2011 11:33 AM > IPADDUnite > Subject: RE: Re: DRS > > > > I just spoke to Ann Ford at INCIL and she seconds Bonnie’s suggestion of Randy Staton. She says Randy is Bureau Chief of Voc Rehab for DRS. Charlotte > > From: IPADDUnite [mailto:IPADDUnite ] On Behalf Of Bonnie Dohogne > Sent: Thursday, April 07, 2011 9:39 AM > IPADDUnite > Cc: Randy.staton@... > Subject: Re: Re: DRS > > HI Ellen, > I serve on the IL Council on DD with a number of people from state agencies. > Randy Staton is with DRS: Randy.staton@... <mailto:Randy.staton%40illinois.gov> and 217.782.2004. If he's > not the right person to answer these questions, he can probably recommend > someone. > > Hope you're getting settled in. > > I'll copy Randy on this to let him know that you'll be contacting him for > expertise for the 800 person on-line IPADD community. > > Bonnie Dohogne > > ________________________________ > From: ELLEN BRONFELD <egskb@... <mailto:egskb%40sbcglobal.net> > > IPADDUnite <mailto:IPADDUnite%40> > Sent: Thu, April 7, 2011 8:51:43 AM > Subject: Re: DRS > > Great discussions on Dept. of Voc Rehab and job coach funding...you are right, > Charlotte we need an expert...Let me get through my move and then I will see who > I can get... > In the meantime, maybe Shirley can ask Don Davia if he would be willing to be a > guest expert on IPADDU? > Ellen > Ellen Garber Bronfeld > egskb@... <mailto:egskb%40sbcglobal.net> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2011 Report Share Posted April 7, 2011 Laurie: It would be great if you could follow up with the lead about Randy Stanton... Thanks, everyone...great connecting and communicating! Ellen Ellen Garber Bronfeld egskb@... Quote Link to comment Share on other sites More sharing options...
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