View Full Version : please call your electric providers....

06-25-2010, 10:04 AM

i saw this article and felt compelled to share it with the families here, please parents try and get your kids on the list at your local electricity provider it could be matter of life and death......

we tried to get my son on the list when he first came home and apparently we were not on it<thought we were,found out after a transformer blew, we were not on it> we tried again and they denied us, so we were never successful at getting on the list with our electric provider, they were suppossed to send out paper work initially and didn't, i thought if you called and they noted your account you'd be ok, not the case here, you have to get forms filled out by the docs, ect...we did this at age 2 and still got denied despite the trach and he was on a little o2 at this time at night, but we still didn't qualify, i guess here you must be dependent on o2 or a vent and my son is not, so please if you haven't recieved an offical letter from your electricity providers you may not have your kids on the list....this is especially important for those kids dependent on o2 or a vent, i would check annually and update!

also don't forget to notify your local fire dept and ems dept, luckly for us the chief at the time was married to our nicu nurse, they live around the corner and we didn't know it until i informed the the dept of my son coming home in a couple of days and the next day when i went into the nicu, the nurse ask where i lived? small world, considering houston is huge and we were in the med center which is a hour away from our house, now her hubby is head of all the fire depts in the area, so it is good to know that they are at least aware of who we are if we ever need 911.

06-25-2010, 10:10 AM
Here it only means they rush to get you turned back on as soon as possible after an outage. We have the letter turned into our elec and it does have to be updated annually.

It does nothing for a turn off because of non-payment. Which it seems like this might be the case for this article. (though they didn't comment on the reason it was turned off)

06-25-2010, 10:15 AM
i think you are right, but i believe there is a certain protocol that must be followed in the event of non payment, i think here is the same priority of getting light back on inthe event of an outage, but they must give x amount of time for non payments too....longer than typical notices....

06-25-2010, 10:17 AM
I'd also be interested in seeing the follow up articles to this story.

She must have been on a concentrator....which you would be able to hear turn OFF if the elec was cut off.

Did she not have travel or E tanks that she could have hooked up too? Even a portable concentrator would have worked. Why not if she didn't? She never left the house, ever? Was she non-mobile and couldn't change over herself? Could she not reach a phone to call for help? If she was non-mobile and had no phone why wasn't someone with her then? Did she not start to feel ill when her sats started to drop?

06-25-2010, 10:27 AM
i think you are right, but i believe there is a certain protocol that must be followed in the event of non payment, i think here is the same priority of getting light back on inthe event of an outage, but they must give x amount of time for non payments too....longer than typical notices....

Not here. Livi was inpatient half of March and all of April and I totally spazed on the elec bill. We got home the night before the cut off date and I hadn't even had time to go through all the mail at that point.

The guy came to the house and shut us off. Luckily we were home and I noticed that the entire house got quiet and I was able to catch him in the driveway. He was able to take a check from me and then turned us right back on.

When I went through the mail, we did have a postcard notice of shut off.

When I updated our letter in May, I asked about medical necessity and shut off and was told there isn't anything that stops shut off if you've gotten a notice, but that they are willing to work on payments for anyone, medical needs or not.

I do think it varies by state. I know in Iowa there are winter dates of like Nov-March where you can't be shut off at all. (medical needs aside) My mom worked for the local elec company for 10+ yrs and had ppl not want to pay anything all winter b/c they knew they couldn't be shut off, but then they'd be scrambling to set up payments or get PO'd when they'd get shut off for non-pay after the winter dates passed.

06-25-2010, 10:28 AM
there are alot of unanswered questions, but i am wondering if she was on a concentrator, perhaps when the power went off and she just didn't have the chance to hook up to an e tank, maybe they stored them in closet somewhere or something and once the o2 stopped blowing, she couldn't get to it.... i know personally we used the concentrator and only used the e tanks one time, so we keep them stored in our upstairs closet. i think the important thing here is to make sure that kids that need to be are on the proper list, we thought we were initially,but were not, luckly we just spent the night at my parents when the transformer blew and all was fine the next day.

06-25-2010, 10:33 AM
I do think it varies by state.

i think you are right, it does vary.

06-25-2010, 11:15 AM
The response from our utilities was basically, "yeah, that's nice - means you automatically qualify for a payment plan if you stop paying your bills"

Our fire department said they don't track these things - too many problems with keeping it up to date.

Our EMS said the same thing....and then about fell over when we *did* call 911. "Um....you have a lot of medical equipment here" was what one finally said after picking her jaw up off the floor :D

Big Al
06-25-2010, 11:26 AM
you need to contact the director of your local EMA (emergency management agency) they are charged with deploying resourses in case of emergency or disaster. Resources like O2, generators, medical transportation. You should be able to reach them through your local government. At least that is how it is in PA.

06-25-2010, 11:34 AM
I know there was an issue just this last winter about shut offs and a vent patient... our company can and will shut off for non payment, no matter what your medical needs.. they stated if you are dependent on electricity, then it is a really good idea to make sure you pay your bill... if you are shut off you have the option of calling 911 and going to ER for vent to be plugged in~ It was a major news story because a mom of an adult vent patient had hers cut off and was trying to sue for the company endangering the life of her child.

I know we have gotten a few shut off notices (always when something medical is going on~because at the time I really just space out and forget about everything else going on~including paying our bills)... we get two mailed notices, and then there is a notice taped to the door for a 48hour warning(I have never gone past this part, cause even when I forget or ignore the mail.. the taped notice got my attention and I called the payment in... so I have no clue if it is a true 48hrs or not)

Our town is very small, our EMS/fire dept is together, and they do have Josephs name and conditions(trach,vent) taped up on a wall... when we have had to call, they have known from this notice to get their most qualified in respiratory care to come to the call.

06-25-2010, 12:12 PM
We are on our power company's list but the problem is that they don't have the list tied to any priority list, or have a good understanding of what house is linked to what power supply locally. There were town hall meetings in CT after the major March storm that knocked out power for almost a week in my area. We actually had power luckily, but the power company took it down three days later and we couldn't get through to anyone there who could tell us when it would be back. Of course, we weren't notified of the power shutoff. Our local EMS advised us to go to a hospital which we did. I was even on the local news after speaking about our experience at the town hall meeting. Make sure your local emergency services know about your child and his/her equipment needs.

06-25-2010, 12:35 PM
I've posted this in the past, but here is a list of utility disconnect policies for each state:

State by State Disconnect Policies (http://liheap.ncat.org/Disconnect/disconnect.htm)

06-25-2010, 02:55 PM
Ironic as we lost power this morning! They county/state/whoever is doing work in the front of our neighborhood and we lost power for about 5 min. Enough for me to curse a bit since it was getting hot outside (I believe over 100 here today) and we'd have to pack up and head out if we were going to be without AC for any longer.

Anyway... I digress... we're supposedly on the priority list, but who knows if they even pay attention to that stuff in our area. :rolleyes:

Trish - I have to agree with you. That whole situation seems off.... and of course the power company is going to look like the ass because the reporter didn't publish all the facts.

06-25-2010, 04:02 PM
We're on a list in town. We have police come around and check on us when power goes out for more than an hour. We can also call for a generator they have purchased for us.
For the electric company, we're on a list like mentioned above- that allows us to pay in installments due to our high bills amounts. As long as we send good faith payments. It's a business and you have to at least look like you're trying to pay, even if it's a few bucks a month. I guess if my child were on a vent I'd be sending my bills in months ahead of time in that case. You can always go to the hospital if there's no other option.

This woman was alone. Which goes to show anything can happen to a person when they're alone- but add special needs and life support- well, no one- especially a child should be alone in that case.

Piecing together from different news sources it comes across that they shut it off for non-payment and non-renewal of medical necessity form. Apparently, a worker came to the house and thought it "looked as though" no one was home.
You'd think the account would be highlighted for emergencies even if the form wasn't renewed. There always isn't someone helping the elderly and as we all know so much can slip through the cracks in our own lives especially in times of high stress. They should make sure they actually speak to a live human before shutting off power to a household where O2 is used. Even if the form wasn't renewed!! That's all red tape ...people can/will die. sheesh!

06-27-2010, 05:18 AM
we are in MA, we have NSTAR, with them we had to write a letter with a lettter from a Dr, we are on a list that gets phone calls if there might be a storm and electricity will get knocked out, if they have problems etc And they can't shut off the power either if we dont pay our bill, we never got into that, we were late late late sometimes, but that's it. It should be one standard policy for everyone, I am sure the guy who physically shut the power off is feeling horrible. Often people dealing with medical issues are also in financial distress due to everything that goes along with it, as many of you know. It doesn't seem fair to have your power shut off for nonpayment if you rely on that to live.

06-27-2010, 09:08 AM
When we contacted our electric company they stated they really don't keep track of that info so if the power does go out to call them and let them know at that time and they would try to make us priority. So, I decided we needed a better back-up plan instead of going to the hospital. So, I called our DME company to see if they could get us a generator. They got into contact with our insurance and to my surprise they covered the ENTIRE cost of a brand new generator for us. If they denied us I was going to use a program Autumn is on to use the funds she has there to buy one but they can only help if we are denied by insurance and Medicaid first.