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Posted on: Fri, 06/01/2001 - 4:28am
sbd's picture
sbd
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Joined: 01/05/2001 - 09:00

Momof4 what kind of benefit are you looking for from Social Security? I guess when I think of SS and a young person I think of my friend who is now disabled with MS, needs assistance to walk and has little for short term memory. He has been receiving benefits since the time it was determined that he would never be able to work (contribute to society).

Posted on: Fri, 06/01/2001 - 9:30am
Concerned about Allergy's picture
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Joined: 01/28/2001 - 09:00

I have been waiting to post this topic for a long time but have never found the right place to post it!! This seems appropriate. I am a mother of a two year old with a PA. When she was diagnosed, I had to wait two months before I could afford an epi-pen. I am a student who has no medical coverage whatsoever. This of course is a big concern in my life considering my daughters numerous allergies(eczema creams, oatmeal baths). We all know the extra expenses that go along with having an allergic child. I find myself completely frustrated by my lack of resources. One day I will be able to afford everything necessary but as of today I cannot. I would ultimately like to have a few epi-pens on hand for grandparents and for the car however it will take me a long time to save for them. In the meantime I will hope and pray that I am never without my one pen at a critical time. If anyone knows of any sort of coverage or supplement available, I would appreciate any and all advise. I would definitely like to see some sort of help in the future for people who find themselves in this type of situation. Thanks for listening.....

Posted on: Sat, 11/24/2001 - 5:31pm
dalesmom's picture
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Joined: 11/08/2000 - 09:00

My son currently qualifies for social security, although we don't receive any cash payment due to our income being too high. In Alaska, in order to qualify for TEFRA medicaid, or waiver medicaid, your child has to meet the social security guidelines for disability. My son also has many other problems other than anaphalaxis to pn/tn/latex, which make him qualify. The allergies by themselves though, I do not know. See a new post I am doing on trying to get travel covered since my son cannot fly on Alaska Air. Have a great day!!
------------------

Posted on: Sun, 11/25/2001 - 6:24am
smack's picture
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Joined: 11/14/2001 - 09:00

I have thought about this since becoming a member. I used to be more lax, I wasn't as informed as I am now thanks to all of you that have been there done that! If I didn't have a computer and didn't have the funds to buy books the only other alternative would be educating yourself through a public library. Alot of parents or single parents don't have the time to go to a library and do research.
Maybe the allergists have a few handouts here and there but not enough to make us understand what it takes to keep our kids safe. About the thought of any not affording epipens...I would donate to a program to provide people who can't afford them. In the Doctors office you know how the Doctor always ask if you have a Drug plan? this is so if you don't he can either provide you with samples free of a drug or perhaps a epipen.
Something should be set up for especially that purpose, we should get those epipens out to those that need but can't afford them.
Distribution at either the allergists or Doctor's office.
People can't live with 1 epipen alone, they need one for school, backpacks, home, grandparents, and any other caregiver they go to. I'd say the average person goes through 6 a year. That's a good question too, so the allergists know what is the norm for us with PA children to need.
Anyway, Good Topic Cindy, I've read alot of your questions and comments and think your doing a great job educating us new ones on issues we appreciate that you have raised.

Posted on: Sun, 11/25/2001 - 7:56am
amymarie's picture
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Joined: 01/13/2001 - 09:00

Ok, I probably have an unpopular opinion... I DO feel low income families should receive financial assistance for medical supplies, doctor visits, etc. in relation to PA. BUT I do NOT feel PA is a disability. I used to help individuals apply for SSA & SSI as part of my job. I do not feel PA kids are disabled, nor should they qualify for benefits for people who are disabled. I think this benefit is for people who are permanently disabled & unable to function "normally". For example, severe mental illness, physical disabilities from accidents/disease, congenital birth defects, etc. Alchoholics used to be able to apply for SSI but several years ago they axed this program. Furthermore, I do not want PA ever to be considered a disability. I feel in the long run this could hurt our children in terms of jobs & opportunities. I also do not want my son to feel it limits his normal activities. I doubt with the current rules concerning SSA & SSI that an app for PA would be successful. I recently helped a girl who has MS & she is totally unable to work anymore. She not only lost her job because of MS side effects, but is not able to dress or bath herself adequately. This is what that money was intended for in my opinion. To support individuals incapable of making a living.
Let me clarify that I do believe medical assistance should be provided, which I think (not sure) this would be covered under Medicaid. They also have a new program in some states to assist families above the income levels for Medicaid but still falling through the cracks.

Posted on: Tue, 09/24/2002 - 4:57am
Connielynn's picture
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Joined: 08/27/2002 - 09:00

Boy I feel stupid. Not really, just kicking myself in the butt. I have had the papers to fill out for SSI for not one but two of my kids. Since our 'surprise' of a heart mumur this summer, maybe I should include the thrid kid also. SSI is a pain. My son is almost 17 and has very serious heart problems and we have never gotten SSI for him. This is something that you really need to fight for. You will be turned down the first round, I have been told. I need to dig out the papers and start filing away! Dd now gets respite care so I think that should help us.

Posted on: Tue, 09/24/2002 - 6:27am
MommaBear's picture
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Joined: 09/23/2002 - 09:00

Now.............I'll have to say, I make a mean living. (Pretty Good). At least seeing that I am a woman, a mother of two kids, and living in suburban America. (Ya know I AM SO KIDDING ABOUT THE "WOMAN" COMMENT!!!) maybe it's too early for me to joke on this site yet? But that being said, I have to admit it is expensive for parents (even with good insurance) to provide what allergic and asthmatic kids need. More doctor visits, respiratory infections, meds, supplies, and oh, the countless hours researching the topics and educating those around you. Shopping takes 3 times as long. I can't buy just any brand of soap. Unless, of course, I want to sit up at night with an itchy kid and a 50 dollar 2 oz tube of Elocon cream for the excema (sp). But, even if funds were available, I probably wouldn't pursue it since I can manage without it. Besides, I'll bet the paperwork and certifications wouldn't be cost effective in the end. (Red tape). Heck, I can't even get the school to listen to me where basic measures regarding a PA are concerned.

Posted on: Sat, 10/05/2002 - 6:43am
synthia's picture
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Joined: 10/05/2002 - 09:00

If anyone knows of any fiancial help i can receive pleas let me know my husband has a good job after beeing out of work after sept 11 but the catsup game is still going on and iam trying to get all i can for little virginia right now the kids donot have health insc. the stoped there medacade as of sept 30 trying to work it out with kid care and medicade thanks synthia excuse my spelling i have three kids 31/2 y o twins and a 6 1/2 y o

Posted on: Sat, 08/30/2003 - 12:26pm
JRMitchell's picture
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Joined: 08/30/2003 - 09:00

First, I apologize in advance for what is almost certain to be interpreted as an offensive post: I live in Alabama, USA. I've had PA since I was 1 1/2, I am now almost 32. My parents were not, by any means, rich growing up, and I am the youngest of 4 kids. I am employed as a paralegal for a local law firm as well, just for background info. Why, unless it is the direst of circumstances, would one need financial assistance for PA outside of purchasing an Epi (and/or asthma medication)? Unless you have your child on Zolaire (sp?), the monthly allergy shots which are supposed to prevent the hidden peanut factor up to consumption of 6 peanuts, what health care is there (excluding, of course, asthma treatment)? If the child doesn't suffer asthma, then how often do you go to the allergist? And, to my knowledge (and, I am NOT an attorney) I understand SSI does not consider PA a disability...

Posted on: Sat, 08/30/2003 - 2:45pm
anonymous's picture
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Joined: 05/28/2009 - 16:42

Living in Alabama probably helps. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
We lived in a southern state in the early part of our marriage (DH in grad school), and the cost of living was incredibly low, particularly in terms of housing. Our 20 year mortgage, on a brand new 3 bed, 2 bath house on an acre of land was $434 monthly. It was a pretty little house, pleasant neighborhood. (My mom was worried that we'd be in a tarpaper shack when she heard we'd purchased a $61K home!)
Now, we live in a western state where housing has absolutely skyrocketed -- our present house would sell for $80K more than we paid for it just three years ago, if we put it on the market today. "Starter" homes in our area are in the low to mid two hundreds, and are placed eight to an acre!
Grocery stores in the south and southwest (again, my experience there is 6 years old) tripled and even quadrupled coupons. I often left the store with four full bags of groceries (cheese, rice, milk, juice, yogurt, canned veggies -- not strictly junk food) for $10-12.
The cost of living was just plain easier to deal with.
Life also takes on new financial dimensions when you start a family. We are very levelheaded parents, financially -- but there are a surprising number of "start up" costs involved! Multiply things like haircuts, and shoes by "x" family members, add school costs, and clothing, and groceries...it really can add up.
I was a single working adult for five years before marrying, and I just about lived on air when it pleased me. My clothes were fairly expensive (I'd rather get two nice pieces than a dozen trendy ones) but they lasted forever. Same with shoes. Well, my beloved has never met a pair of shoes he couldn't wear out in record time, nor a pair of pants or shirt that wouldn't rip or stain or tear. It was quite a shock at first to my frugal soul. (And now my DS shows every indication of living as "enthusiastically" (read hard on clothes) as his daddy!)
When, as a newlywed, I found out that DH would prefer not to have spaghetti for dinner EVERY night...even though it was INCREDIBLY cheap...it was not pretty, I tell you. So we planted a LARGE garden out back of our little house. 35 shoulder-high, wildly productive tomato plants for a two member household... [img]/peanut/boards/images/%%GRAEMLIN_URL%%/shocked.gif[/img] And six zucchini plants, and a host of other veggies.
We were giving stuff away by the bagful!
Now we BUY our zucchini at $1.25 lb -- again, something that probably isn't an issue in Alabama! I'm not bashing Alabama, by the way -- I just think there are things that people in the less expensive (and more garden-friendly ) areas take for granted.
Point of all this being that it would have been very challenging for us to deal with $32 dollar Epis when DH was in grad school, with a $16,000 stipend. Replacing one, if it had been left in a hot car, would have been a blow. Meeting an insurance deductible would have been a challenge, as would have been trying to pay out of pocket for a CAP RAST. We aren't coping with asthma, so I can't even add in those costs -- which I think for most families probably include at least a trip or two to the ER before it (the asthma) is under control.
Even the computer which I'm using to access PA.com only entered our lives after grad school (and has stayed there ever since -- it's almost seven years old. Still works just fine.)
We were both fortunate enough to finish school debt-free. Lots of young families are still paying off college debt when children come into the picture.
Sometimes there just isn't a lot of "extra" money in the first place. Throw something like PA into the picture, add another sibling or two, perhaps with other allergies/asthma -- you're talking special foods, extra meds, possibly private or home school, if airborne or contact reactions are a part of the picture, and public schools can't or won't accomodate.
It goes on and on.
I don't think your post is offensive -- just a bit innocent.
And mine is just...LONG.
-Sue

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