Julia
29 posts
Feb 17, 2008
12:06 PM
|
Hi; Does anyone get social security benefits or other benefits for their child with Coat's disease? Julia
|
jakesmom
32 posts
Feb 18, 2008
9:54 AM
|
Most Coats' patients would not qualify because their non-Coats eye has good vision. I took this from the Social Security website: You may qualify for Social Security or SSI disability benefits if you are considered “legally blind.” We consider you to be legally blind if your vision cannot be corrected to better than 20/200 in your better eye, or if your visual field is 20 degrees or less in your better eye. This same legal definition applies to special education services in school. However, I do know our son will be eligible for a 504 plan at school that will make sure teachers are aware that maybe he should sit in a certain spot in the classroom or other special situations that will help him learn with vision in one eye only (which I have been told by many, there are very few limits from unilateral vision!). Anyone have any special arrangements at school?
----------
Jennifer
|
Julia
30 posts
Feb 20, 2008
4:53 AM
|
Thanks, Jennifer, I kind of figured, which is good - I don't want to be able to use the benefits! But, just wondered, especially for help with medical bills. Finn will enter kindergarden this fall, so I will struggle with who to tell - Finn, of course, does not like to talk about it and doesn't want other people to know, but I am sure his teachers will need to know. His "good eye" is 20/20 - yeah! And we have found no limitations or hesitations on his part for any activity he has chosen to do. Julia
|
Jacobs Parents
95 posts
Feb 20, 2008
10:20 AM
|
Julia,
Finn, teacher will obviously need to know, so Finn will sit where he can see best. His teacher will also need to know, so when the kids go outside for lunch someone will be watching him. Also, Finn may have trouble going down the stairs in school, due to decreased depth perception. The teacher can try to be close to him if the class needs to go up or down stairs. The gym teacher should know, so that someone makes sure that Finn wears his RecSpecs during gym class. Our Jacob's teacher will not let him participate in physical activities without his goggles. She marches him right back to his classroom, to get them out of his bookbag. It is absolutely critical that Finn's bus driver knows, for obvious reasons. The school nurse should be aware of it as well. Our school nurse knows that the last thing Jake needs is pink eye.
As far as the other kids knowing about Finn's Coats' disease, we talked to Jake's teacher about mentioning it to the other kids. Once everyone got to know each other, the teacher told the class that Jake was born with a rare disease, and can't see out of one eye. It has never been an issue and nobody has ever made fun of him. Kindergartners don't typically show the cruelty we seem to learn later in our school years! Try not to stress about it too much. We feared the worst, and it was mostly unfounded. Good luck,
Dave
|
redscuba
3 posts
May 01, 2009
3:52 PM
|
as far as medical bills are concerned when i was a child unfotunately we did not have health insurance to have surgery and care.you could try contacting a local LION's Club chapter.they were great to sponsor me and my surgeries for years.the lions foundation in louisiana.i had all of my surgeries and care at LSU eye school in new orleans,la. i probaly had 20 surgeries and steroid injections into the eye as well.take care,alan
|
jjmullins
7 posts
May 16, 2009
5:42 AM
|
has anyone that has coats' in both eye ever been denied for benefits?
|
jjmullins
11 posts
May 21, 2009
11:28 AM
|
hey julia who do you do to for an optamoligist we go to the retnia group in columbus and see dr. opremkic for jerry hes good
|
Jacobs Parents
209 posts
May 21, 2009
4:14 PM
|
Jerry,
The Cole Eye Center at the Cleveland Clinic is outstanding, if you are thinking of a 2nd opinion. It is just a quick trip down 80, isn't it?
|
2boysmom
4 posts
May 24, 2009
7:28 PM
|
OMG = how strange is it that my son w/ coats name is Finn too?????
|
