Transcript: SOS from Louisiana:

A Blueprint for Grassroots Inclusive Emergency Responses 

 

SOS from Louisiana: a Blueprint for Inclusive Disaster Grassroots Responses

By Stephanie Hydal and copilot Darren Moyle for Portlight Inclusive Disaster Strategies

Angéla Lorio: In a disaster with my son having a trach, things go to a whole

'nother level.  When we lose power in the house, which we did, immediately

my mind has to start thinking "How much battery power do I have on all his

medical equipment?  How am I gonna get power?  If his airway gets

occluded and that suction machine is out of power and he's in respiratory

distress, I have no way of saving his life."

Stephanie Hydal: This is the story of two moms who filled the gap in

disaster relief response.  Impacting their local disability community.  But

before we get to the flood of 2016 they were already community organizing.

 In April 2016 they formed the Trach Mommas.

A:  My name is Angéla Lorio, I live in Baton Rouge, Louisiana.

Jessica Michot:  I'm Jessica Michot, I'm from Denham Springs, Louisiana.

A: Our logo has the name of who we are, Trach Mommas of Louisiana, and

it's an outline of our state.  And in front of that is an actual tracheostomy

tube, which is the center of the lifeline for our kids.  That's actually what

goes from the hole in their neck straight to their lungs, that has allowed our

kids to be alive.  Trach Mommas of Louisiana started because the two of us

have sons that have a trach and they needed a trach pretty much from birth

when they were in the NICU.  And we didn't really have any support.  We

had a lot of questions and not a lot of answers.  And we felt very alone and

isolated having the responsibility of keeping our child alive.  So we didn't

want anybody else to have to experience that.  We share our experience,

the strength you know that we have from learning things the hard way.

 We're available 24/7.  We are there to walk the walk that we've been

through.  To make it easier on the next mom.

S: August 11, 2016 the rain starts at about 2-3 inches per hour.  

By August 15th, Louisiana was declared a state of emergency and

impacted areas included, Baton Rouge, and Denham Springs.  Over 10

areas were flooding and as Angela raced to find high ground in Slidell, she

passed a highway sign for New Orleans 65 miles away.  The sign was

going under water.  

Meanwhile Jessica was stuck in her home with rising waters and in

desperate need of supplies.  The Trach Mommas became the Flood

Mommas.  

A:  The weatherman didn't know what to make of it because this hadn't

happened in what like 1000 years?  

You know it's... it's one thing to have something coming that you know it's

coming.  

It's another to be blindsided.  

Just had to just keep it together, knowing how many people were caught so

off guard with their kids.  

You know- "Did everybody have their equipment plugged in?  Did

everybody have enough supplies?  When did they last EME delivery come

in?"  You know, "Were they almost out of stuff the day before and didn't

know they were gonna have to leave and pack up?" 

 

We belong to a global network.  Just a very grassroots Facebook group of

Moms of Trach Babies, is the name of it.  

We just sent out SOS from Louisiana- that we have people there flooding.

That means you are going to lose all of your supplies.  All the supplies that

are so crucial to keep your child or your family member alive.  

And after the water receded enough for people to get through, we had

horse trailers showing up full of supplies.  

We had moms from the Tristate/DC area have a BBQ and collect supplies

and send their husbands down with U-haul trucks.  

And the supplies just kept coming and coming.  

Another person say hey, "Southwest Airlines cargo wants to fly in the

medical supplies in for y'all."  So we literally, cause they had to weigh it tofly it in-- had 2.5 tons of supplies flown in

And we quickly became vital part of people being able to live in this

disaster, ground zero, and get people what they needed.  

 

We just brought it to them.  Whether they were in a shelter or a hotel, we

quickly got on the scene and collaborated with FEMA, and VOAD, and the

Governor's Office of Disability Affairs, and the Governor's office of

Homeland Security.  The ALS associate let us just move into their office.    

S: Once the flood waters subsided, the disaster continued.  146,000

houses in the region were damaged.  Including many houses belonging to

the disability community.  The Flood Mommas began wading through the

aftermath.

A: Continuing barriers and needs are that everyone's still recovering.  

We have so many people that either can't get in their house or living in a

FEMA trailer or have just moved back into their house and you have to

remember with the air quality, the construction, the sheet rock, you know all

of your village, your support system, they're trying to recover too.  

You don't have your, your help you had.  That it's 6 months out, in another

6 months it's still not going to be over- Because yes we have rescued

everyone.  Everyone is alive, but if you could wrap your mind around a

typical family that loses everything, and add to that medical supplies,

medical equipment.  Things that are needed to, to keep your child alive in

your home.

They lost their bed but if you're living in a FEMA trailer, you can't fit

specialized medical beds in a trailer.  So what do you do?

J: We had parents and individuals who took forever for their insurances to

approve, and then they needed proof of loss.  They needed, they would

send pictures of their flooded concentrators and say "How is this not proof

of loss?"  "Oh well we need the ID number on the back of the concentrator."

 Or one of our parents had a piece of equipment that he could not find and

insurance company did not understand that.  What happens during a flood

is water comes in your house and takes your belongings out of your house.

 I understand the need for fraud protection but people were not able to get

their medical supplies.  Not only to live but to navigate life.  We had people

waiting on wheelchairs.  So they were essentially and unable to leave their

homes for months.  And what we provide, we deliver and connect with all of

their needs.  So if they call us we say "OK what else do you need?"  It's not

SOS from Louisiana: a Blueprint for Inclusive Disaster Grassroots Responses

By Stephanie Hydal and copilot Darren Moyle for Portlight Inclusive Disaster Strategies

all about what medical supplies do you need.  It's what else can we help

you with.

S: As air quality became a problem for trach users, the Trach Mommas put

out a call for air purifiers.  They received stacks.

J: Many of our kids started getting sick after the flood, so my son included,

due to air quality.  And for our kids a regular cold can land them in the

PICU.  That trach is the direct line to their lungs.  So you're talking about

the mold particles, all of the air quality was affected and so we provided

everyone in our group with those purifiers, and that was such a blessing for

all of our families.  That reduced illnesses after the flood.  

A: We have guesstimated from all of our records and all reports of all the

other organizations that we helped, somewhere in the neighborhood of

2500 to a little under 3000 people and that's still counting.  Cause we just

got a call yesterday from FEMA of someone in need.

One of my biggest passions now is to do everything I can so people like

me, my son having a trach, a feeding tube, and a shunt, will be prepared.

 And they can rest at ease because no matter what happens they're

prepared and they know what to do. 

J: (Sigh) Our main goal during the flood was, started off to save our kids.

 And then it became very relevant that we had to reach farther.

 And it's kind of encompassed the whole disabled community.  

And I think we have the ability- for lack of a better phrase- to kick ass and

take names, and to speak up for those who can't speak up for themselves.

 And to hold those accountable who need to be held accountable, and say

this is what we need and you have to hear us.  Because we won't be

silenced.  And I think this flood, we made our voices heard and I don't think

we're going to shut up for a long time.  

A: If anybody out there can relate to anything we said and would like to

know more about us, what we do, and help us get other moms to help

others to create an exponential ripple effect of an amazing family our

website is www.trachmommas.org, that's T-R- A-C- H-M- O-M- M-A- S dot O-R-G. 

SOS from Louisiana: a Blueprint for Inclusive Disaster Grassroots Responses

By Stephanie Hydal and copilot Darren Moyle for Portlight Inclusive Disaster Strategies

S: This was produced by Stephanie Hydal with co-pilot Darren Moyle for

Portlight inclusive disaster strategies.  To find out more go to

www.portlight.org