Are you able to get some kind of disability When child has D?

[hallenbeckfamily]

My husband and I were talking today,money is getting tight and I can't go back to work right now.I did medical records before Chris was dx and had just stopped working a few months prior so I have been home to take care of him and go to school when he needed injections ect. I started working at the school -on call- and only get a few hrs a month (7) so far but its the only job I can do for a while till Chris gets started on the pump.No one at school will give injections-something about liability issues. Is there some kind of disablilty or social security that you can apply for when you have a child with a disease-like diabetes that could help out with finances? Figured this would be the best place to find a starting point to find out who to call. Thx Jennifer

[Emmasmommy]

Hi....I know what you are ging through all to well I am from Canada and when Emma was dx we didnt have drug coverage and it was killing to put out all the money needed to care for D. Anyway needless to say there is a disabilty thing for all children with disabiltys and the way that a D child falls into it is because "Life sistaning tharipy" with out treatment they cant live so anyway the way our program works is that Emma gets her own drug card and dental card she also gets an "allowance" so to speak that helps with the coast of pump supplies (we still dont have coverage for that) the way that they figure out our monthly is by looking at last years medical expences and then divide by 12 to a max of 400 per month (things they look at for medical trips to the end, trips to the peds, hospital stays, daily meals for parent when the child is in hospital, parking, all out of pocket perscriptions and activities that your doctor would say are need for there health ie swimming what ever)
Im not to sure if the US has this but its a great program they only down side is that they want to know EVERYTHING about your family income and out goings and they re asses every year.

Good luck hope you can find the help you need

[hallenbeckfamily]

Thats the part I worry about is the income we have now.I'm sure we don't qualify for any state help. My husband make a good living,and when I was working we were doing well. In oct of 2004 we had a house built and moved in,then I started working and I got a new 06 Dodge Ram extra cab, 2 months after that my hubbie got the same truck as mine. We for the first time in our lives were getting ahead and doing well. I stopped working b-4 summer,there was no way I was going to pay ALL my paycheck to daycare and STILL owe money on top of it for daycare. I wanted to switch jobs anyway so figured I would start looking after summer. Well then came Oct 4th and Chris had diabetes. Now can't work and my hubbie pays EVERYTHING. He works 12-15 hr days and since x-mas most saturdays. I have mentioned trading in my truck on something that would drop the payments in half but we will lose serious money-we looked into it this weekend. We are getting by but its tight. Thank god I am going to start using A Plus Medical Supply so we won't spend any money now on insulin and supplies. But back to the point-I think and assistance programs thru the state we will be over income even with a family of 5. Thats why we started thinking maybe satae disability of SSI. Hope someone has some ideas. Its just now feasable for me to work anywhere other than the school. No job will be thrilled about me having to leave at 10 am and 12:30 and sometimes 2 to go give my child shots. Sometimes life just really STINKS-meaning poor Chris getting diabetes. Jennifer

[sammysmom]

Jennifer, does Chris go to a private school??? Just wondering because the if he does not, then the school must provide someone to give the shots...


hmmm extra money, well this is what I do: I watch a two yr old with diabetes and his baby brother..It helps with the bills and I feel very comfortable taking care of him. If you were willing to do that, you could put a call into your endo's office and tell them that if any parent asks about child care for a D child, maybe they could refer them to you. I would look into state programs, you would be suprised what you can qualify for...even help with food, that will relieve some budget tension (my boys never stop eating, you should see my grocery bill!!!)


shannon

[BrendaK]

I have never heard of anyone in the US recieving disability to care for a diabetes child.

What concerns me the most about your post is that no one at your sons school is willing to give injections. There are lot and lots of laws about that. Most schools are required by law to care for a child with diabetes, even if they are on shots. It falls under the Americans with Disabilities act.

Have you pressed this issue with the school?

I'm guessing that one reason that there is no disability benefits for caregivers of diabetic children is because there are so many laws saying that federally funded daycares and schools HAVE to accomodate these children, thus allowing parents to work.

[Amy C.]

I agree with the last couple of posts: Your son's school is out of line. They must provide someone to give your son shots.

[Emmasmommy]

about the school giving shots where we are from the school is not able to give shots as well as if she ever went into insulin shock and needed glucigone they wouldnt be able to give that to her we were told that when Emma starts school we will have to eather A go into the school or B provid a nurse to go in when needed thru some sort of agincy...

About the income thing - where we are from a family of 4 can make up to 65000 a year and still get help and it just goes up from there we are a family of 7 and we can make up to 75000 per year and still get the help

[Momof4gr8kids]

You might not be able to get it for his D, but you might be able to get it for his autisim. Or the combo of the two. I've heard that applying for disability is very hard, though. You might want to check your state programs as sugested above, first, and see what they can offer.
Good luck. I sure hope you can find something to help out. Jamie

[hallenbeckfamily]

I know part of what they mean by the liability is teachers,office staff ect,giving shots. The nurse is only there on weds and I thought she had said she couldn't give shots but last time I talked to her she said If I couldn't be there she was available-so I might have misunderstood if it applied to her. Since I was home when he was dx I told them I wanted to be the one there for shots,it was so new I didn't want anyone else doing it. Now I am wondering if they really can -or should I say have to step up to the plate for injections. Thx for your replies,I will look into this and clarify what she meant by the liabilty with injections. I knew they had to provide care for D children,but I thought that meant staff for testing bg and monitoring Chris and his food and getting him snacks ect-did not know the law applied to the injection part. This site is so great-I'm going to call the nurse in the am. Like I said there is a chance this was a miscommunication due to the fact I said in the begining at dx I wanted to be the one there but I do know I heard them say something about liability with the shots. My mind was so full of panic stress and fear at dx I can't remember exactly how she phrased it. Thx again guys~~Jennifer

[BrendaK]

Wow -- it does sound like your son's school needs to step up to the plate. Children with diabetes are protected under the Americans with Disability Act, like I said before. A school is REQUIRED to make accomodations for them, which INCLUDES giving shots, if that is what they are on. If they refuse to give shots, they are DENYING your child an EDUCATION.

Ask them what they would do if you were a single mom and HAD to work. I don't know the legal references off the top of my head, but your son is entitled to a 504 plan. A legal document that lays out the care the school will provide your son. There is lots of info on this forum and website about 504 plans if you do a search for it.

Please let us know what they say and more power to you for standing up for you son.

[MrsBadshoe]

If he goes to public school you should be able to have a 504 plan which would require the school to have someone to give shots. Now in theory that works 90% of the time but there are public school systems out there that have fought tooth and nail that they won't do it. More often then not they do because they are require to by law.

That being said.

I also would check into if your state offers medical assistance for cronically ill children. In the state of PA they do which means that both my D kids are covered by secondary insurance by the state of PA. It is NOT income based (thank goodness). We apply for SS assistance and then are denied but because they are cronically ill we get a medical waiver. This saves us close to $500 per month for both kids. Only a few states have this medicaid option but it can't hurt to ask.

[hallenbeckfamily]

The school called me and asked me to come in and and have a meeting for the 504 plan before he even went back to school. So we do have a 504 plan in place. I just need to clarify with the nurse a few questions I now have. I honestly could have sworn the school said they would do everything and anything for Chris re: care and treatment of D just not the injections,yet she did say last week she would be available if I could not be there to give the shot. As I said there is a miscommunication somewhere, since he was dx I said at the start I WOULD be there to give injections. I will clear this up tomarrow now that we have started talking about me going back to work,even part time. Jennifer

[wendyc]

I would put your questions in writing and ask them to answer in writing and sign off. Then as soon as this is done, have your 504 ammended to accomodate any changes made due to this most recent meeting. Then have all paperwork kept on file with the 504. I know in the beginning there is so much going on with trying to not only get yourself settled, but your child so it is easy for miscommunication to occur. It's best to lay it all out on the table and get things straightened out. It will also prepare them for the years to come that your child is in their school as to what his diabetic needs will be (of course they will change from year to year) and how you want them addressed.

Your endo or ped may actually have info on state medical assistance for both income and non-income based programs. I know our peds office has brochures all over the place on these topics. Check with them.

[hallenbeckfamily]

WendyC~ That is good advice thx! I'm making a list now of questions and clarifications too. I also googled 504 plans in Oregon so I know my facts better if I need to bring anything to their attention. I will also do as you mentioned-have them respond in writing. Honestly, I don't think they will say anything wrong in reply to me,they have been nothing but helpful and always have looked out for Chris in school,not just his D but his rights as a child with D. The nurse often calls me or emails me for updates and makes additions to the 504 plan we have in place. Such as when my fav lady at school left that did most of Chris's D care she (the nurse) called me first thing mon to work out a list/temp addition to 504 for the person taking over temporarily-meaning she wanted to know if there was anything I needed the other lady to know about his current patterns. But having them respond on paper is a great idea~you never know and its better to be prepared ahead of time in case something DID come up that went against his rights. SO~~THX! Jennifer

[Boo]

Jennifer,

Don't rule out the possibility of a state program that could help. Here in Pennsylvania we have a program called Access which falls under the umbrella of the welfare system. It is not income based (or at least was not a few years ago...there was talk of change regarding that and we let our coverage lapse because of it...big mistake...long story). Our pediatrician informed us of the program...his son also receives the benefits. It was a major PITA to fill out all of the forms (all regarding family income even though that had nothing to do with your childs acceptance into the program, all that was needed was the chronic illness). We had the coverage for about a year and it was great. It covered EVERYTHING that was not covered by our primary insurance (meaning it covered all of our copays for everything for that son...even things like the dentist which are not diabetes related). I'm so angry at myself for letting it lapse, and I've considered starting the whole process over again, but that's another story.

Anyways, I guess what I am trying to say is that you should check out all avenues. Do you have a social worker through your endo's office? That is who we went through to get the initial info (though we had to ask about it...it wasn't just volunteered to us). Keep searching...hopefully your state has a similar program.

[bz'smom]

I also would check into if your state offers medical assistance for cronically ill children. In the state of PA they do which means that both my D kids are covered by secondary insurance by the state of PA. It is NOT income based (thank goodness). We apply for SS assistance and then are denied but because they are cronically ill we get a medical waiver. This saves us close to $500 per month for both kids. Only a few states have this medicaid option but it can't hurt to ask.

I was just going to post this. We didn't even know we would qualify...the paperwork was started for us by the hospital before we were even discharged. We had to apply for SS, and find out if we were elligiable (which we weren't...I was happy about that...just wanted help with the medical supplies) Our insurance company only paid around $2,000 of the $6,000 for the Minimed pump for Brandon. :eek: Thank the Lord for MA...we would have been really pinching our pennies for come up with the remain $4,000, and to pay for the medical supplies for the pump. We are so thankful for MA, we never even thought of applying for it. It really hit me tho in the hospital when the financial people (not sure what their title is:confused: ) were talking to us, and they kept saying that he is considered to have a cronic illness. It was just like a punch in the stomach after being knocked out over and over again. Just another label for our sweet kids. :mad:

[Ellen]

You may not be able to attend this tomorrow, but you may want to get involved with this group Oregon School Based Health Care Network

SBHC Day 2007 (http://www.osbhcn.org/action/SBHC_Day.html)
On Monday, February 26th over 100 students, SBHC staff and other supporters from across Oregon will spend a day at the Capitol educating legislators about school-based health care. Join us!