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Old 11-09-2009, 12:25 AM
againes304 againes304 is offline
Join Date: Feb 2009
Location: Kentucky
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Question pay for caring for your disabled child!!

I am sorry if this is considered to be off topic was not sure where to post! But I was upset and offended the other day when I was at my daughters school and I filled out some papers to get help with a the basketball program that she wants to be in! the camps and program is 350.00 and I recieved a paper that said if you qualified (low income) you can get help with this fee! Of course they asked all kinds of questions income related, and wanted to see bank statements. The lady said so how much do you get paid for taking care of your disabled child. And I was like miss I do not get paid to take care of my child he does recieve SSI but I get nothing personally for taking care of him! She said well I know that you do. Then she replied parents that have disabled children get paid to stay at home and take care of them I know of parents that get paid. I worked home health and I am not aware of any programs like this! I do know there is something called a CDO, but that is available for non skilled waiver patients. Trach and g-buttons are skilled! This really upset me because she said that I had to be lying. I was very infuriated about the whole ordeal! I even thought about taking it up with the board of education in our county! Please tell me if any of you know of anyone that gets paid for taking care of their own child! I am so curious!
Amy, Mom to Brionna (9) , and to Jarriell Jr better know as JJ (born 10-27-08) trach since 02-10-09, diagnosis Severe chronic lung & BPD. Nissen fundo also lower pyeloplasty & Mic-Key button all done 03-09. 2 Prolapse rectum repairs. Right & left ignueal hernia repairs. JJ decanned himself aug 2010 and has been doing great!!! Sleep apnea resolved with toncilectomy!
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Old 11-09-2009, 06:20 AM
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Livi's_mama Livi's_mama is offline
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Location: Atlanta, GA
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Certain states give some sort of special stipend to parents who care for their disabled children at home.

California does I believe.

Georgia sure doesn't.
PROUD Mama to TWO 26 wkrs
1055 g- Olivia Forever 7, trached for 6.5 yrs, gtube, iv port, BPD, Hydro/VA Shunt, Epilepsy, CP, Fought Hepatoblastoma for 28 months
688 g- Nathaniel is my bright 10.5yo
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Old 11-09-2009, 07:23 AM
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Kate Kate is offline
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Join Date: Jun 2005
Location: Minnesota
Posts: 4,740

I agree-some states do-I'm not really sure how you can find out. I don't think our state does or boy did I miss the boat on that one! (MN)

Good luck-
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!

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Old 11-09-2009, 07:39 AM
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Jacob's Mom Jacob's Mom is offline
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Location: Atlanta, GA
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Originally Posted by Kate View Post
I agree-some states do-I'm not really sure how you can find out. I don't think our state does or boy did I miss the boat on that one! (MN)

Good luck-
Kate, I have a friend in MN who son has the same condition as Jacob. I do believe she receives a pretty significant amount of money to stay home with him.

FL surely doesn't - we don't even get Medicaid.
Amanda,Mom to Jacob, greatest kid in the world. X-Linked Myotubular Myopathy, trach, vent, g-tube.

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Old 11-09-2009, 07:41 AM
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KJKK8437 KJKK8437 is offline
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Join Date: Apr 2008
Location: Virginia
Posts: 2,664

Some states do, others don't. If Virginia does, then, like Kate, I sure missed the boat and had a whole lot of "staff" here getting paid by the state that I didn't need so I could keep the services we really did need.
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

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Old 11-09-2009, 07:41 AM
MomofTwoBoys MomofTwoBoys is offline
Join Date: Sep 2009
Location: Ohio
Posts: 334

I live in OH, and was told by our nursing agency that if I finished my nursing degree (I have about a year left... but haven't been in school in about 6 years :P) that I could be Hunter's "nurse" and get paid 40 hours a week.... Although I don't know possibly when at the moment I would have time to go to school..... so in a way, yes its possible....
Melissa, mom of two great boys... Christian 8 yrs old and Hunter 2 yrs old... former 24 weeker(born at 15.3 oz, 11 inches); bpd, pulmonary hypertension(resolved), nissen/g-tube, off of o2 12/17/10, off the vent 6/30/10... DECANNULATED 12/17/10!!!
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Old 11-09-2009, 09:03 AM
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aydenava aydenava is offline
Join Date: Jan 2008
Location: buffalo
Posts: 881

Never heard of this before,Im in NY
Ayden 6 yrs,tracheomalacia,G-T,nissen,rare type dwarfism ,resolved pierre robin,bronceomalacia,Single stage LTP May 2008,now decanned!!! .Ava 2 years
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Old 11-09-2009, 10:26 AM
llwilliams8 llwilliams8 is offline
Join Date: Mar 2009
Location: Texas
Posts: 323

I know you can not get paid in Texas. I have family members who are my attendants and get paid but they can not live in the same house as the patient and so there is no way parents could get paid.
Lacy, mother to Madison (10), Gage (6), and Autumn (1) who has spina bifida, Chairi II Malformation, trach, vent, and g-button. She is pure joy and I am so blessed to be her mommy.
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Old 11-09-2009, 11:49 AM
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TommysMommy TommysMommy is offline
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You should ask her if she asks ALL stay at home moms if they are paid to take care of their children. I would also bring it up to the school board as well. She acted very inappropriately.

And for the record, no payments in South Carolina either.
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
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Old 11-09-2009, 12:11 PM
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Ann Ann is offline
Join Date: May 2002
Location: Phoenix, Arizona
Posts: 5,391

In AZ, the child has to be 18 years or older for a parent to get paid for providing their care. After Jack turns 18, I (or one of his older siblings) could get paid to provide some of his services - like habilitation. However, I couldn't get paid for providing his approved nursing hours or respite hours because he qualifies for skilled nursing care and I'm not a licensed nurse (nor do I care to ever be one ).
Ann-mom to Jack, forever 15-yrs old;vent dependent;dystroglycanopathy congenital muscular dystrophy, died peacefully in the arms of his mother on 1/5/2014
Jack's Journey and Then Some
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“Somewhere over the rainbow, skies are blue, and the dreams that you dare to dream really do come true”
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