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| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |

01-08-2009, 08:14 PM
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Junior Member
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Join Date: Dec 2008
Location: Indiana
Posts: 30
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Ssi
What is the typical amount of time before benefits begin after applying for SSI? Today, I took care of medicaid and ssi and it was exhausting and frustrating! I never knew how cruel and mean government agencies could be. I had to get all of this done because everything has to be in place before my baby can be discharged from the hospital next month. He will be 4 months by that time! OMG enough!
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Jessica, Mom to Gage born 9/29/2008 @ 38 wks. Trach, vent (off vent 8/09 ), g-tube, PRS, cleft soft palate, growth restriction in utero, shunt due to hydro, dandy walker varient, pachygira, seizures, dislocated leg and knee, optic nerve hypoplasia and possible Moebius Syndrome more......finally released from the hospital February 18, 2009! Also mom to Evie (8)
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01-08-2009, 09:20 PM
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Senior Member
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Join Date: Jun 2005
Location: Minnesota
Posts: 4,726
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I don't know the answer-I'm guessing every state is different. I'm sorry you have to go through this. I get frustrated everytime they send me papers to fill out. I think my blood pressure raises just seeing the envelope!
Good luck-it does get frustrating!
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Katie-mom to Mitchell, DOB 12/16/04 trisomy 13 mosaic, severe laryngotracheobronchomalacia trached 5/04, cleft lip and palate DECANNULATED 12/16/10 A GREAT BIRTHDAY GIFT!
www.caringbridge.org/mn/mitchelljohncragg
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01-08-2009, 11:49 PM
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Member
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Join Date: May 2008
Location: Southern California
Posts: 762
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The standard line here is it takes about 120 days. But we got ours started in about 24 days once all the paperwork was in and I did the phone interview. I hope it is quick for you too!!
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Janis - Mommy to one Little Prince
Blogging it all at Sneak Peek At Me!
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01-09-2009, 07:13 AM
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Senior Member
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Join Date: Jul 2007
Location: Vienna, VA
Posts: 2,227
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After the phone interview - gathering all the paperwork to be filled out - sending it to them - then having to give them more information it took about 3 months to see the first check.
Michelle
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Grand Ma (or Nanou French version of Nana) to Cedric born on August 5, 2006, Trached on October 16, 2007 because of subglottic stenosis due to 27 intubations for debridment of polyps
https://www.babiesonline.com/babies/c/cedric1/
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01-09-2009, 08:09 AM
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Senior Member
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Join Date: Apr 2005
Location: Home of the OU Sooners!
Posts: 4,112
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It depends on the state and the disability I think. I did the quick phone interview, had an appt the next week, and a check within 2 weeks. It went over into a new month and they sent me a check for the previous month as well, backdated.
We never did apply when Emma was in the NICU, as a matter of fact she was on her vent and everything by the time we applied, probably around age 7 months or so. I heard it was a nightmare so I was afraid to apply really, and wish we would have earlier now, because we were some of the lucky ones it was easy for.
We get max benefits and a letter once a year that asks if anything has changed, and that is it. No going in to requalify etc. But Emma does have permanent brain damage, CP, mental retardation so they don't expect much to change.
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LORI--MOM TO ELLA AND EMMA(born 10-16-04)AND DEREK (born 9-13-01)
EMMA- CP,TRACHED, G-TUBED DEC 2004 AND VENT DEPEND JUNE '05, CORD ACCIDENT DUE TO MONOCHORIONIC MONOAMNIOTIC TWIN PREGNANCY
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01-09-2009, 08:22 AM
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Senior Member
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Join Date: Mar 2007
Location: Bardstown, KY
Posts: 2,494
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We applied while Tommy was still in the hospital. Our caseworker sent us preliminary paperwork with lots of release forms for the hospital. I also went and got Tommy's complete medical records copied and brought with me. We were approved in a couple of weeks and got his check soon after. Make sure you report to them the second he's discharged because you will only get about $30 a month as long as he's in the hospital and the full amount once he's home.
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Rene, Mom to my Angel, Tommy. Born 9/25/06 at 33 weeks, with Single Ventricle Heart Defects and Cricopharyngeal Achalasia (Gtube dependant, poor swallow). Trached at 2 months for Severe Subglottic Stenosis. My little flirt died unexpectly 8/20/08 from complications from undiagnosed bronchopneumonia.

Forever, Tommy's Mommy http://www.musingsofaheartfamily.blogspot.com/
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01-09-2009, 12:02 PM
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Senior Member
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Join Date: Apr 2008
Location: Virginia
Posts: 2,664
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We never qualified. I couldn't get a sensible person at SSI to speak to me. Alex's disability was never a qualifier, despite his Medicaid, as far as they were concerned. We made "too much money" to EVER qualify, so they told me.
Now, I KNOW that isn't quite right. I've been told that 1000x by the social workers here, but no one can tell me how to get the right answer.
So, this is my way of saying that I hear ya about how mean the agencies can be and how frustrating it is. Hang in there.
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Karin
Alex's Mom
Alex born 6/19/2007, PRS, Trached and GTube at 3 weeks, palate repaired 12/20/2007, failed decannulation 5/7/08 due to undiagnosed suprastomal collapse, jaw distraction 9/9/08 (insertion) to 10/30/08 (removal). Single Stage LTP 2/17/09 and now member of the Naked Neck Club. Need a laugh? Check out http://itsallgoodtoday.blogspot.com/
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01-09-2009, 05:08 PM
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Member
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Join Date: May 2008
Location: Southern California
Posts: 762
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Quote:
Originally Posted by KJKK8437
We never qualified. I couldn't get a sensible person at SSI to speak to me. Alex's disability was never a qualifier, despite his Medicaid, as far as they were concerned. We made "too much money" to EVER qualify, so they told me.
Now, I KNOW that isn't quite right. I've been told that 1000x by the social workers here, but no one can tell me how to get the right answer.
So, this is my way of saying that I hear ya about how mean the agencies can be and how frustrating it is. Hang in there.
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I was told the same, even as a single mom I made too much. Every one just about laughed out loud at the mere "idea" of me qualifying for anything!! However when Austin was 7 months old I quit my job to stay home...and the flood gates opened. I was SHOCKED at how easy it was to qualify and regretted listening to the hospital sw & financial counselors for so long. It is not EASY, it just wasn't as hard and arduous as I had feared.
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Janis - Mommy to one Little Prince
Blogging it all at Sneak Peek At Me!
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01-09-2009, 08:51 PM
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Member
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Join Date: May 2008
Location: Rochester, NY
Posts: 103
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night
Getting on medicaide was a NIGHTMARE. Sydney was sent home from the NICU in November, and I don't think we were on medicaide until May - and nurses cannot get paid without being on medicaid!!!
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mother of Sydney, born 8/17/06 (27 weeks gestational age). Trached for almost three years. She had two fundoplications, PDA ligation, and a rib graft surgery done at Cincinnati. She was decannulated on July 2nd.
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01-10-2009, 10:01 AM
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Senior Member
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Join Date: Mar 2002
Location: Fort Collins CO
Posts: 1,540
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Hold on to your britches, you will run into that alot. You can do it!! 
__________________
http://mamazgirlz.blogspot.com/
Gretch mom to, Heather(22), Aimee(19), and Celia(14) Dandy-Walker syndrome,cleft palate(repaired at 9 yo!),t-tubes,asd, left pulminary arterial stenosis,trach,aspiration,reflux,fundo,g-tube,npo,dysphagia,kidney defect,neurogenic bladder & bowel,spina bifida,scoliosis,seizures,hip dysplasia, sensory issues, ADHD,vasomotor rhinitis,autistic like behaviors, hearing aides.
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