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  • Writer's pictureMichael Pearce

5 Essential Steps for Parents of Children with Special Needs During this Pandemic

You're taking all the right steps to protect your child with special needs from getting Covid. But have you prepared for the "3Cs"?

Fifteen years ago, my phone rang, and my life changed forever. I'll tell you about that in a moment. First, a couple of questions.

When you are sick with a bad cold or the flu, do you feel like you can fully and effectively take care of your child with special needs? (Of course not, right? You can barely lift your head off the pillow).

Special Needs Parents Parents are only human (well, often truly "superhuman").

And despite your vital role in caring for your child with special needs who is 100% dependant on you, and you are not immune from life's harsh treatment.

So when one of the "3Cs" strikes - Covid, Cancer, Calamity - it's certainly not going to be easy then to do everything you need to do for your child/ren.

Close your eyes for just a few seconds and imagine having a very serious and potentially deadly illness. You're lying in a hospital bed on a resuscitator, or dripping chemo into your veins at the infusion center, or getting massive rad blasts from the IMRT machine.

Now open your eyes and think about how someone will be able to step in and care for your child with special needs while you are out of commission. No matter what age your child is, would you have detailed and up-to-date plans in place to help that key person care for your child?

And now ask yourself the most serious question of all: What happens if you die from an illness or disease without having plans for your child in place?

Reality Check: You're not going to be able to create any plans at all when you are seriously sick or battling a life-threatening diagnosis. I know whereof I speak.

I got "that call" 15 years ago. The news from the doctor was life-shattering: Stage 4 cancer. Fortunately, because of my profession, I had comprehensive plans in place to protect my young daughters and provide for my family's future.

But, still, that didn't stop me from worrying, stressing, hysterically crying, and collapsing from the weight of emotions pouring over me when envisioning my girls growing up without their father.

Even knowing that I had planned for their security if cancer ended me, I still was an emotional mess.

I can't even begin to imagine the emotional torture I would've experienced from being on death's doorstep without any plans for my girls.

Think about it.  Right now, you're reasonably healthy and fine.  Yet, you haven't done all the things you need to do to ensure that your child with special needs will be OK without you.

So, if you can't get yourself to make plans now, then how on earth do you think you are going to do that when you're seriously ill?  Or suffering cognitive decline and physical impairment as you age?

From the exact moment of a devastating diagnosis, life violently veers off course. Days become filled with tests, treatments, and doctor visits.

And perhaps there are many months of surgeries, or chemo and radiation...feeding tubes, IVs, and a few near-death trips to the ER.

A long illness or cataclysmic diagnosis will leave you feeling cut off from your family and friends. Isolated in your world of medical treatment. Emotionally withdrawn. You'll be drained physically and emotionally. 

When you've been told you might have a short time to live, you simply won't have the ability to do any effective planning for your child/ren. Your energy, your very spirit, will be consumed by the battle for life.

And you don't want to be in that position and thinking about plans for the future care of your child with special needs for the very first time.

And if you do use that time to try to make your death plans, it's going to be emotional torture. At the worst time of your life, you don't want to be thinking about how your children will be doing without you.

Take it from me, struggling through seven weeks of 45-minute rad sessions with your head bolted to the IMRT machine is not a good time to be thinking about the plans you haven't made for your children.

The good news is that there are things you can do now to eliminate devastating outcomes for your child should you die without any plans.

Here are 5 Critical Steps that every special needs parent must take now to make sure your child will be OK if one of the 3Cs happens to you:

1. Face your fears and take yourself out of the picture

Try to imagine your child's life without you. Scary? Yep. Certain to happen? Yep. Most likely, you will die first.

There's no tangible thing for you to do in this Step. (no list or document or professionals needed). It's just you and your emotions. You need to truly imagine what your child's life will be like without you. Once you get there in your mind and soul, the urgency of the steps you need to take become crystal clear.

I've learned that one of the hardest parts of planning for special needs parents is allowing them to accept that they can't be here forever. Once they truly accept this outcome, it's not so hard to get parents moving on their plans.

When you take yourself out of the picture, the next 4 Critical Steps are easier to get done. I talk more about this in Key#2 in the 7 Keys to Special Needs Peace of Mind.

2. Hire a fantastic special needs lawyer

As you navigate life with a child who has special needs, you're going to need the advice and counsel of lawyer. (See Step 3). And not just any lawyer will do.

You going to need a Fantastic Special Needs Lawyer. Stay away from the DIY online legal document tools. Don't hire just any estate planning lawyer. And especially not your neighbor's cousin's friend who just got out of law school.

You're going to need, and your child deserves, the best Special Needs Attorney. How do you find such a lawyer? Ask another special needs parent or your financial adviser for a referral. If they have a great lawyer, they will be very happy to share.

Better yet, you can subscribe to our 7Keys Blog, because next week we'll be posting our "Ultimate Guide to Hiring a Special Needs Trust Attorney."

3. Create a Living Trust and Special Needs Trust

OK, here's where I hope to save you a bunch of time and mind-numbing research. I know that special needs parents are world-class researchers, but on this topic, you can stop clicking around.

You can just move forward with the goal of creating a Living Trust and Special Needs Trust plan. Your Fantastic Special Needs Lawyer will explain how it works. You don't need to be an expert and know everything about trusts in order to decide whether you need a trust or not. You do.

If you have a child with special needs, and you want to provide financial security to him or her with an inheritance, you will need trust planning. Knowing more about how trusts work, the rules, etc. won't change your game plan: You need trust and a Special Needs Trust.

4. If your child is age 18 or older, obtain a conservatorship or Powers of Attorney

When your child turns 18, he or she is a legal adult, with all the rights enjoyed by any other adult. Which means that your parental rights are cut off by law automatically at age 18. There are a couple of ways to prepare for this major event:

A. Conservatorship (called an Adult Guardianship in some states)

B. Powers of Attorney

A conservatorship is a legal proceeding whereby the court would transfer your child's legal rights to you so that you can exercise those rights for your child's protection.

Powers of Attorney are legal documents that your child with sufficient mental capacity can execute to authorize you to make financial decisions and medical decisions for him or her.

If your child is already age 18 or older, then you should make an appointment ASAP with your Fantastic Special Needs Lawyer to discuss the right steps to take.

If your child is under age 18, then you only need to get serious about a conservatorship or Powers of Attorney when your child is around 17 years old. That will give you enough lead time to get things done before their 18th birthday.

Again, your Fantastic Special Needs Lawyer can guide you through these questions and suggest the appropriate remedy for when your child turns 18.

Stress Saving Tip: Don't spend a lot of time googling or researching these topics. Conservatorship and Power of Attorney laws vary from state to state. And for court proceedings, the court in different counties within your state will have different rules and procedures. There's very little utility, and lots of room for confusion when you go online.

This is why you should consult with your own attorney on these matters. Local knowledge is critical for conservatorship and Powers of Attorney planning.

5. Provide comprehensive, detailed guidance for your child's continuing care and protection so others will know what to do after you die

How will others know what to do for your child? That's the heart-wrenching question that will eclipse all other thoughts if you are diagnosed with a life-threatening disease.

Depending on the severity of your child's disability, you're going to need to leave fairly detailed, or extremely complex, instructions and guidance for your child's care after you are gone.

How can you get this all done? There are lots of tools out there for you to write things down and make lists. Word processor, Excel spreadsheets, pen and paper, notebooks and binders. Or, the worst one of all, the "Letter of Intent." (In 20 years, I've never seen a practical, up-to-date, helpful "letter of intent.")

Tip: Based on the thousands of families I've worked with, I've learned that these traditional tools will rarely work to help you leave guidance for others to care for your child with special needs. Keri, our resident blogger and special needs mom, explained why here and here.

So, how can you provide effective and realistic guidance to others for your child's care after you're gone? That's why I created Vest.


We're offering the above not as another "checklist" or bothersome nag, but instead as a way for you to consider and solve NOW these issues that would certainly cause you unbearable stress and heartache if you are facing Covid or another life-threatening disease.

- Michael Pearce

Disclaimer from Michael

Thank you for your time in absorbing this post. I am the founder of Vest, and also a special needs attorney. Vest was born from the tears of a terminally ill mother, concerned about the future of her child with special needs. I want you to use Vest, not to enrich me, but because it really works to bring you peace of mind. I've battled cancer seven times in the last 15 years, starting when my daughters were 14 and 11. So everything above derives from personal, life-altering experience. At this point, my death plans are as common and comforting to me as my daily latte at Pete's.


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