Until it Happens to YOU!

The other day I was perusing the ‘EB news’ of the day and I ran across an article of a family whose insurance did not pay for bandages (shocking, I know!) and the family resorted to get their supplies from a state program for children with disabilities which picks up expenses, usually outrageous, when the family cannot afford them. When the state was taking their sweet time approving the bandages and the family ran out, they were scared and upset, and understandably so. They contacted the news station to get their help, the state got pressured to approve and within days everything was all better.  Let’s face it, until it happens to YOU, you will never quite grasp how expensive and stressful it is to have a sick child. Never.

The comments under this article were quite disconcerting, but the one that got my attention was the one that stated how the “two ‘able bodies’ parents should go to work and pay for these bandages and not rely on the taxpayers to foot the bill”.

Insert vomit sound here.

Apparently this “person” is vastly ignorant about the significant expense of bandages (thousands of dollars a month) and relies on the talking points of those who could not care less about the misfortune of others and do not bother researching what exactly this family’s needs are and what they are going through. I can’t say I am surprised. I’ve had to deal with this kind of ignorance since Nicky was born when my insurance did not pay for bandages and there was no state program that covered them either.

tumblr_m7o7r1vxvA1qcn3oqo1_500Let me explain things for those that are willing to learn more about the plight of bandages for EB patients: they are as important as Diabetes’ patients supplies and chemotherapy treatments for cancer patients. They are VITAL. It’s the only treatment available for EB wounds. Period.
Should these supplies/bandages be covered by insurance? YES!!! The reason why we purchase an Insurance Plan is so our Health Care Bills are taken care of. Families with an EB patient only have ONE treatment for their condition: cover the chronic wounds with ointments and bandages. Unfortunately these supplies are outrageously expensive, which family can afford to pay $3-10,000 a month for bandages may I ask? Who? Many families are forced to skimp on their supplies, some have to lie about their income so they can apply for social programs. No family can afford such a bill unless they are independently wealthy.  You may sign the petition if you haven’t done so already, to try to light a fire under someone’s behind to FIX THIS.

And let’s not forget that this child is not like any other child. This baby cannot just be put in daycare while the parent goes to work to earn this supposedly exorbitant amount of money to pay for bandages. If family is not nearby to help, the only two options are to either pay for a Nurse (do you know how expensive it would be to pay for a full time Nurse? Look it up!) or one of the two parents is forced to stay home, so the income is slashed in half.

How do I know all of this? Because it happened to ME. I had to quit my great job to take care of Nicky full time when he was born, and to top it off the insurance did not pay for the bandages and there were ZERO state programs in Arizona that helped me in any way, shape or form, that’s why next time I better get an insurance online from One Sure Insurance. We lost our house, our cars, I used to have to wash and reuse bandages, something highly frowned upon and extremely risky but I had no choice. None.

I know what it’s like for nobody to give a crap, because, in my case, nobody did.

But why does it take to HAPPEN TO YOU to develop the compassion to learn more about the situation, ask questions, try to come up with solutions?
Why is it perfectly OK to have this attitude to ABANDON families in need, when to no fault of their own they were unlucky enough to have a sick child? What is wrong with our society when we decide to have the attitude of  ‘it’s not my child, not my community, not my problem?’

Is it too much to ask for bandages so our children can LIVE? To some, apparently so. Shame on you.

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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How to find Individual State Programs

These programs help low-income families (usually) or/and children with special needs.

When you click on the link for YOUR State’s Department of Public Health, search for (if it’s not immediately evident) ‘Children Health’ or ‘Children Medical’ services.

If the NAME of the State Program and information it is known, that information will be below the state and link.

Another resource for all states is your local Social Security Office. If a child can be declared disabled, they would be covered by the local or state Medicaid program.


State and Local Health Departments

Want a link added? Do you have the NAME or any information about a Children’s State program that is not listed? Are any of these links old or outdated? PLEASE LET US KNOW!!! Just fill out the SURVEY below and I will edit the list.


Caregiver Poll Results

Around 2004/2005 a poll was posted on this website to ask various questions such as where they get bandages, if they have help etcetera. Here are the results of that survey.

The vast majority of people that have answered the survey stated that one of the parents is home full time and does all the bandage changes. Others tried to get the State to help, but they exceeded the income requirements (which in many states is 30k a year, no matter how many other children they have). Others tried to find daycare so that the children would have interaction with other kids, but most daycare centers did not want to accept that kind of liability. For those that either had hired help or had the state pay for the help, or had interesting tidbits about the care of their children, here’s what they said…

Here’s what some of the parents have said!

  • We have 2 nurses (for 2 RDEB children) and they both are allocated about 45 hours a week. They can do their whole bath and bandage change. The nurses are paid through the state of Ohio under the Medicaid Waiver program. The nurses go everywhere we go.
  • I have two boys with EB and live in state of NJ we also have a Medicaid waiver program and I was able to have nurses to help. They were allowed to do everything except the IV and they went everywhere with us. My youngest has a nurse to go to school with him in which the school pays for it.
  • We do have a pediatric nurse 35 hours a week that can do limited wound care. When I say limited I mean that she can apply ointments and change bandages. When it comes to draining blisters she will get one if it’s large, but she can’t do feet (they are the trickiest and most painful) and doesn’t get the smaller blisters. Insurance pays for her completely. She also goes to school with him.
  • We have a nurse from the hospital comes once a week to be sure our son has no infections, and a nurse “helper” who comes 4 times a week. They help with the bandages by holding him, I do the bandages and burst the blisters myself. They come 1 hour and a half a day for now. They are flexible. They bring all the bandages, that’s the best part, we really can’t afford those. We live in Canada.
  • We are very fortunate we have grandma to take care of our daughter 3 full days and 2 half days during the week. The other half days she is in pre-school. We pay her $200 every two weeks which is cheap but the most she would take. Our daughter needs are not severe just the mending of falling wounds and blister popping and grandma does great at this. Her preschool teacher has been notified and trained on wound care by me and I supply all of the bandages.
  • I am the sole caretaker of both my EB children. One of my girls is on SSI, and for her many needs, I receive 283 hours a month (California State max of a program called IHSS-In Home Supportive Services) I can choose to have someone else come in and help me, or I can do it all myself. At present, I do it all myself. It works out to 9.5 hours a day every day, throughout the month.
  • We took care of our daughter (JEB) ourselves. I did have friends watch my toddler (EB free) so I could do dressing changes in peace.
  • My son is 17 now. He has RDEB. I have always done the dressings myself with him helping as he got older . Now that he is pretty much a man, he doesn’t want my help. The only thing I do is put water in the tub for him and set out all his bandages and supplies. He does the rest. He is very independent!! He is truly my hero!
  • I do receive 25/week of skilled RN nursing and they are able to do bandage changes and popping blisters but my child still prefers MOM to do it. My child gets SSI and Medicaid through the state of Rhode Island and they pay for the nursing also he attends pre-k and has a CNA that rides the bus back and forth and also cares for him in the classroom, she does not do any bandaging and will take him to the school nurse if he needs any and the school department pays for that.
  • I have a LPN that comes 1 or 2 times a week to give my daughter her bath and do her dressings. She is paid for by Children’s Special Health Care Services, an extension of Medicaid in the state of Michigan. It was hard to bring her in to do this since she was 4 1/2 when she came. At first she didn’t like it at all that someone else was doing it, but now she looks forward to the nurse coming – she gives longer and more fun bathes than I do.
  • We live in the Philippines and we hired 3 certified Nurses, they each spend about 14 hours a day. They can do everything, they trained with us at the hospital so they are as familiar with dressing changes as me and my wife. We pay them about $500-800 a month.
  • Here in New Jersey the school system pays for the nurse and they hire who they want (for school). NJ Medicaid pays for the supplies.
  • Here in Florida the local hospital informed me of a special medical daycare in my city of residence. The State Program from Medicaid and Children’s Medical Services (CMS) pay for the caregiver to come to the house 35-40 hrs a week and for the bandages. I do most of the bandage changes myself at home but I personally trained her nurse on how to do dressing changes. She does full changes if they become soiled or if my child takes her bandages off.
  • My daughter has RDEB and we live in Florida, both of us work but mom only part-time. A Nurse takes care of her, we found her through our Insurance, although insurance only pays for one visit a week, and we pay for one more visit a week out of our pockets. We do dressings every day, but full blown bath and bandages every other day. Our insurance is Aetna HMO, right now they pay for supplies with a $5000.00 out of pocket then they pick up the rest, with one nursing visit per week. The nurse comes twice a week to assist me, it takes us 4 to 5 hours per dressing change. Everything the nurse does, he has to do with me. He is not comfortable doing any of it without me. He is a RN also not a LPN.
  • Our grandaughter, which we care for, has RDEB and we live in Oregon. The State pays me 20 hrs a month to care for her from (HMO) DD SERVICES. Our HMO Insurance pays for the bandages. We get whirlpool treatments 3 days a week, 20 minutes in the whirlpool.
  • We live in Washington State and in our situation both parents work, one part-time. I found our caregiver through a Girl Scout Troop. Our daughter is on SSI and they pick up the tab for the supplies we need. Our caregiver does not do any bandaging.
  • We live in Mississippi and thankfully our insurance is paying for the bulk of things at this time. We are on Medicaid. Mom does all the dressings, baths etc for our son. Before mom decided to stay home from her full time job we had a full time baby-sitter/caregiver, however the extend of care she could do as far as wound care was a quick patch up job and draining of blisters.

If you have any hints or tips for other parents regarding help or how you get bandages, please leave a comment below! Thank you!