Marisa Howard-Karp and Julie McKinney
May 13, 2020

Part 1: Pandemic emergency planning for families of children with disabilities: Why is this so hard?

As parents, it’s almost unthinkable to imagine what would happen to our kids if something happened to us. For those of us with kids with disabilities, it’s that much more complicated.

[Image Description: A Black woman and a Black girl are hugging with their eyes closed. The girl is smiling and has her head placed on the woman’s chest. She’s a dark blue shirt and her hair’s a dark brown afro. The woman has a slight smile. She has …

We need to talk about a pandemic emergency plan.

Wait! Don’t close this page! Are you uncomfortable already? I am.

As parents, it’s almost unthinkable to imagine what would happen to our kids if something happened to us. For those of us with kids with disabilities, it’s that much more complicated.

But here we are in the middle of a pandemic. It’s time to make a plan. Even if you already have a will and an emergency plan, you probably need a pandemic emergency plan to make sure that if you and your co-parent (if you have one) get sick, your child will be in good hands until you are back on your feet.

We know this is really hard. So this week, we’re publishing a short series of articles and tools that will help you move past whatever is in your way and walk you through a step-by-step process of making a plan.

Let’s talk about some of the barriers to getting started.

I’m already stretched so thin. I don’t have the time and energy to think about something so big.

The demands on parents are ridiculous right now. We are parenting all day every day with no break. We are trying to be our children’s teachers, which means many of us are special education teachers. Some of us are also our child’s nurse, personal care attendant, or occupational therapist. Some of us are also working. And all of that is on top of the usual demands of parenting complex kids. And now we’re asking you to tackle something so hard and emotional?

I want to share a trick that helped me get there. A friend told me: spend 3 minutes writing down your priorities for your life. Now spend 3 more minutes writing down how you spent your day. Then compare your lists. My priorities list was mostly about keeping the people I love safe and happy and healthy. My other list was, well, laundry, homeschooling, dishes… you get the idea.

Once I saw in black and white that I wasn’t spending my time on the things I cared about the most, taking this on started to make a lot more sense. Try it. I bet you’ll have a similar experience.

I have no idea who would be able to take care of my kid.

Kids are complicated, and kids with disabilities can be even more complicated. For some of us, our children’s needs or behavior are the reason we don’t spend more time with our family members or friends. And this feels like a lot to ask of anyone.

Try to think of it this way: this is your emergency plan, not your forever plan. You’re not looking for a favor so you can go to the movies. You’re asking for someone to be there for you in case of emergency.  So start with the people who you know would show up for you in a heartbeat if there was an emergency. What happened the last time you were sick or injured? Who was there to help? A sibling? A neighbor? A committee from your congregation? That’s your starting point.

It’s so much. I don’t know where to start. I’m overwhelmed. Primal scream!

This is where my aunt likes to tell me: we’re going to eat this elephant one bite at a time. The next few posts will help you do just that.

We’ll start with thinking about deciding on an emergency back-up caregiver. We will walk you through the paperwork (yes, you can do this without a lawyer) and help you think through who else needs to know your plan.

From there, we’ll talk you through what else you need to write down. How will your back-up caregiver keep your child calm during an anxious moment in time? What kind of care does your child need? Check back here in a few days for sample plans, checklists, and a step-by-step process that will make this as easy as possible.

You can do this. I promise.

Read part 2 of this post: Who will take care of my child if I get sick?

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