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Autism and The Life Insurance Factor

Autism Reality

By Julie Obradovic

A few years ago I let my term life insurance policy lapse. The rates had skyrocketed, and we believed we could get a better product. We never did anything about it until recently.

And so last week we met with our good friends’ son, a recent college graduate who is embarking on a career in financial planning. He asked if he could meet with us to discuss my need for coverage and bring along one of his mentors for guidance. We were one of his first real appointments, and were happy to oblige.

At one point, the discussion became a little too close for my comfort. This young man is not only a close friend’s son; he is also a neighbor. Sharing intimate financial details about our life was not something I was comfortable with. He understood and we went back to life insurance discussions only.

It was at that point I realized that I was not prepared for the emotion of this discussion. I had thought it would be a quick one-hour appointment, give me the information, sign the contract and wait for the health test type of thing. I had completely forgotten how much more significant it was, as crazy as that sounds.

When figuring out how much life insurance you should purchase, there’s a formula that factors in a number of things such as, how long you want the coverage; how much money you contribute to the household now; and how much money your spouse and family would need to live the same way if you died tomorrow.

These aren’t especially pleasant thoughts, that’s for sure, but there is comfort in knowing that you are taking action to make sure your loved ones are cared for. I kept thinking about Suze Orman yelling at me about not having this in place for the past few years. Life insurance, she always claims, is your number one financial responsibility as a parent. Matt and I have always been financially responsible, I believed. Wills and trusts at 25; life insurance for him; college plans; maximized retirement accounts; etc. I felt badly that we had let time pass without me being covered.

But I also felt badly about something else. There was something they weren’t factoring in, something missing on their amazing app that allowed them to push in a few numbers and generate an equation to give us the magic number about securing our future and the future of our children.

Autism.

At no point had either of them asked us about the additional cost of making sure a child would be cared for that we really weren’t sure would ever be able to live independently, or without a sibling at least, for the rest of her life if something happened.

The app spit out a number pretty quickly, and I looked at Matt. Matt has a financial background and actually used to sell securities. He knows the lingo, the product, and all of the fancy math that goes along with it.

“Is that enough,” I looked at him sadly.

Before the mentor had the chance to reassure me that it was plenty based on my income and age, but that I could certainly get more if I really wanted to, I interrupted him.

“We have a daughter with special needs. Although she’s doing phenomenally, the future is still pretty uncertain at this point. We honestly don’t know to what level she’ll ever be able to live independently, and if she can’t we have to make sure that not only will she be cared for the rest of her life, but that her siblings can help her too.”

There was silence. My neighbor’s mouth and eyes opened wide. He said nothing for a moment. His mentor replied.

“Well, do you have some idea how much you would like to leave her with, or how much she could need?”

The snarky part of me wanted to reply, “Isn’t that your job?” But I didn’t. Instead I said, “That’s the million dollar question, now isn’t it? No pun intended.”

It dawned on me right then that yet another industry has no clue what is on the minds of millions of parents right now, and worse, also seems woefully unprepared or unable to help them.

The conversation continued and the number we originally generated went up substantially. I kept thinking about what he asked me, which was in many ways a veiled way of asking what it costs to have a life. That only started me thinking about the mindset so many have that some lives are worth than others. I had always thought of that as a philosophical expression. Now, I realized, it also had a financial interpretation.

The meeting ended just fine and we agreed to open a policy on the number we generated. I didn’t think too much about the conversation as the evening went on and tried to put it out of my mind.

The next day, the doorbell rang. It was my neighbor. He wanted to know how he did and was looking for constructive feedback. But more important, he claimed, he wanted to thank me.

“You know, I want to thank you for really teaching me something yesterday. I’ve only been doing this for a few months, and I still have so much to learn, but there hasn’t been one class I’ve taken so far that has even mentioned planning for kids with special needs or how to even go about sensitively asking for that information.”

He actually got emotional. He has known Eve since she was 4.

“I really believe Evie is going to be fine. I really, really believe that. I’ve watched this whole thing with you guys. But I just can’t tell you how much what you and Matt shared with me impacted me.”

He continued sincerely.

“My parents have never had to worry about my sister and I being able to take care of ourselves. I mean,” he laughed poking fun at himself, “but you know what I mean.”

“How do you do it? You guys are always so happy and in such a good mood! I can’t even imagine the weight on you having to think about that every day of your life.”

He was feeling worse than I was. I could tell that we had really crushed him. I needed to bring him back from the edge. I reassured him that we’ve had a long time to process this, and that we too believed she would probably be okay. I reminded him that was one of the main reasons I left my job this year, to give her all of my time and attention and push her to the next level.

But then I took advantage of his undivided, heartfelt attention and compassion and looked him deep in the eyes.

“I believe we will be okay, yes, but 1 in 20 families are not as fortunate right now. 1 in 20. 1 in 68 kids, maybe more to be honest, may need lifetime care. And those families need you. They need you to reach out to them, to help them, and to give them guidance. And most important, they need your industry to step up and start coming up with creative ways for families to be able to afford this without being taken advantage of. It’s bad enough to have a sick child who can’t take care of himself. It’s even worse to know someday you won’t be able to either.”

He nodded and vowed that he would never lose site of that. As long as I am your client, I nodded and vowed right back sincerely…you won’t.

Julie Obradovic is a Contributing Editor to Age of Autism.

Comments

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Shane Thorpe

Is there an Insurance company out there that will cover children with Autism? Or cover them on their parents policy as a child rider?

Camille Raymond

I need life insurance for my son his name is raheem Raymond he is 12yrs old and its already hard trying to find some insurance for a child with autism and add that dont make sense....if I tell the truth he not qualify but if I lie then I dont know I help find life insurance, quotes to make sure he ok for rest of his life

Janet

I can't tell you how incredibly touched I was reading this story. I have three children....the youngest with Asperger's. I am just now going through the process of helping him get a job. I too feel he will eventually be independent....but he is certainly taking much longer that his older siblings. I am so touched by the sensitivity of this young male insurance agent. My older son has the same sensitivity and a couple of summers ago told his father not to worry about his younger brother - that he would always be there for him. I see this amazing younger generation coming forward and I am so touched and moved by their heart felt choices. I pray that they see autism waning on their watch. Thanks for sharing this incredible story.

Jan

I just figured out that my life insurance will be no longer if my husband goes before me because I am a rider on his.... UGH!
He has a pittance that maybe could care for me and my son for a year or two at most. The we'll likely end up on welfare... that is even IF we get his insurance. he was a non smoker when we got it, but later on he started smoking (partially from the stresses of Autism. Who knows I might get nothing!
Anyway what I want to know is HOW do you pay for life insurance if you don't have any money?
How do you set up a special needs trust when it costs around $2,000 to $3,000 to do the paperwork with a qualified lawyer?
It terrifies me that my son (turning 29 in a few weeks) will likely be left with nothing because we don't have anything... All I can do is ask that when I go that donations in my memory go to a Andrew's sister so she can care for him.
It's either that or hit the lottery

Betty Bona

Benedetta,
It's always better to recognize the dangers ahead. There may be nothing to do but I won't be caught off guard. So, actually, thank you.

Benedetta

I am sorry Betty.
Forgive me.

Betty Bona

Benedetta, you're scaring me! I know that's a possibility for so many families with an autistic child, but I don't want to believe it. Once they are adults, it's so much harder to control their toxic exposures and their detox and other treatments. In some ways, it's an even more helpless feeling.

Benedetta

How do you plan - there is no money left after paying for medical insurance with a 5,000 dollar deductable.

Besides the kid with mild autism ends up being the steady one while --

the kid that drives parents nuts, and brings them to their knees is the one that was - they thought normal --even the above average one in school -- the one that they have no idea has a mental illness.

These kids go off to college, or trade school, or in pursuit of a career; using there their great talents to become some kind of bio-chemical nuclear -mechanical, chemical, engineering doctor with a side business as a computer entrepreneur - only to end up back home - living at home - lucky to be serving burgers - and I do mean lucky cause some don't even have that - instead they are causing the parents to scrap around for 10 to 15,000 dollars to send them off to a drug rehab place --after they have broke their parents by stealing/cajoling/tricking their parents for drug money.

Well not always for drugs, nope that is the one that leaves the parents scratching thier heads when a grown kid is impulsively buying smurf berries for some kind of on line video game-- or if they are some what successful in business and yet their parents have to help keep them going, all cause they have a great trucking business, but have spent it all or more on telephone bills.

Yeap that kid ith autism ends up being the steady one.

Meanwhile have you noticed - you have one parent many times that has immune problems of some kind of their own - and the medical establishment slowly green bleeds them dry.

Guys 1 out of 4 college kids have a mental illness and bipolar has gone through the roof. THank goodness they are now dignosing them -- think of all those past generations when we went without a dignosis (being sarcastic here)

Bill Christiaanse

Dear Julie,
I was sorry to read about your planning problems. I have a 29 year old autistic son, and I have worked as a financial advisor for over 30 years for a well known firm. One of my firm's specialties and one of my own specialties, because of my son's needs, is financial planning for families with disabled children. My firm, and at least one other, has an excellent website (free) with planning advice and an excellent calculator. If you contact me directly, I will be happy to refer you to the site and other resources that you and your husband can use.

Michael Giammatteo

Thank you, Julie.

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