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~Caregivers Poll & Results~
Please Answer our poll to help
other parents find caregivers or help care for their EB children:
Please Note: Your name and/or email address will not be disclosed.
However, I would like to have it in case I have any further
questions.
THANK YOU!
Silvia
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 do now want to
accept that kind of liability. For those that either have hired help
or has the state that help pays, or have interesting tidbits about
the care of their children, here's what they said...
Here's what some of the
parents have said!
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We have 2 nurses
(for 2 RDEB children) and they both are allocated about 45 hours a week. They can do they 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.
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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.
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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.
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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.
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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.
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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.
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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.
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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!
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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