For Richer or Poorer

06.11.14

The Cost of Raising a Special Needs Son

I wouldn’t trade my son Edmund, who has a rare chromosomal rearrangement, for any typical kid. Alas, I also count myself quite a bit poorer.

A recent study in the journal JAMA Pediatric predicted that a child with autism and intellectual disabilities will cost a family almost $2.5 million. My first thought was, “Not surprising.” My second thought was, “Holy crap, what will Edmund’s grand total be?”

Edmund, the second of my three sons, was diagnosed soon after his birth with a rare chromosomal rearrangement called Cri du Chat syndrome. Edmund is now 4, and is a giggly, sociable, nosy, occasionally impertinent boy. He cannot walk independently—he uses a wheelchair or commando crawls. He requires a feeding tube for nutrition. He is non-verbal. He has far more than his fair share of health problems. Edmund was in the NICU for four months after he was born, and has had seven surgeries—some major and some minor. In short, he is and always will be one expensive little guy.

If you are a parent to typical kids, you’re well aware of the thousands of little sacrifices you must make to raise them. You can no longer sleep late on weekends. You can’t spontaneously go to the movies. You spend a lot more money than you would otherwise. You need to find steady employment with decent health insurance. A kid with a serious disability is just like that. But a lot more so.

Our family has been lucky in many ways. We have a great support system in our family and friends. We live in Montgomery County, Maryland, which provides thorough early intervention services and special education. He is in an amazing public preschool with devoted and knowledgeable teachers, staff, and therapists.

Our health insurance, UnitedHealthcare PPO, is better than most. They didn’t blink at his NICU stay, which I guess topped $1 million. They rolled along with the $13,000 wheelchair. Oddly, they balked at a $600 bath chair that we needed when Edmund outgrew toddler baths but still was unable to sit up, saying it was “recreational equipment.” (If you happen to be a claims adjuster at UnitedHealthcare, allow me to suggest you try to bathe a slippery, squirming, low-muscle-tone child while making sure his head is above water at all times and see just how “recreational” it is.)

Even with all our advantages, however, Edmund is costly to us now and always will be. You may be wondering how it could possibly hit the $2.5 million mark. Easy as pie.

First, there are multiple extra expenses. Even though doctor visits are covered, there’s usually a $15 or $30 co-pay. Not a particularly noticeable expense for a healthy kid, but when you’re going to various doctors two or three times a month, that’s usually $50-$100. Some of his therapies are covered by our insurance; however, the physical therapist we believe is best for him is out-of-network. That’s usually another $200 a month out-of-pocket. He is still in diapers and will be for the foreseeable future. That’s another $50 or so a month, plus extra for wipes.

When you think about it, Edmund is the equivalent of a ginormous beach house in the Hamptons that we’re paying off for the rest of our lives.

Medical equipment is a serious issue—sometimes it’s covered by health insurance, sometimes it’s not. When in the house, Edmund sits in his wheelchair (he’s apt to throw himself out of any typical chair). When he outgrew his toddler car seat, he still needed a seat with a harness, as he is unable to sit in place with just a lap belt. So we upgraded to the Britax Marathon, a cool 230 bucks. He is now outgrowing this.

Next, we will have to get a seat made for people with special needs. Anything made especially for people with special needs is wildly expensive. I have no idea whether that’s because insurance sometimes covers such things or because the production volume is low, but the next car seat we’re looking at is close to $1,000. And then there is a turtle pillow with weighted blanket that costs $342.99 (25% off the list price!). He is now able to climb out of a regular crib, largely in virtue of his height. But he would fall out of a regular bed. A bed for people with special needs—essentially a large crib—can cost about $10,000.

These costs go on and on.

Child care is probably the costliest part of having a severely disabled child. If you have a 4-year-old who can’t walk and is fed through a feeding tube, you can’t just hire the local teenager for childcare and pop out for a night at the movies. You can’t join the local babysitting co-op. You have to pay a hefty premium for someone qualified and willing to take on the challenge of taking care of your kid. When we consider doing something active with our two typical kids—a hike, a bike ride, camping—we have to hire someone to care for Edmund, and $25 an hour is a minimum where we live.

You might be thinking that I’m wallowing in self-pity because I can’t go on a hike. Plenty of kids don’t go on hikes, and they are fine. This is true, but it indicates the other, more indirect cost of Edmund. That is, it’s not just what we actually pay but what we don’t earn. If we don’t pay for someone to take care of him, then my husband or I are taking care of him. And that means we can’t work.

There’s no way my husband and I can both have full-time jobs at regular business hours and care for Edmund. There are too many doctors’ appointments, too many emergencies. We both recently earned Ph.Ds in philosophy. We began our study before we married and had kids. The job market in philosophy went from awful to dreadful starting in 2008 and has never really recovered. There are hundreds of applications for any one job—and all the more applications in cities with children’s hospitals and decent public special education. There is the infamous two-body problem in academia. We have something of a three-body problem. It is, rather famously, not the most prudent move to get a Ph.D in philosophy. But plenty of people have managed to be professors and have families. We just did not foresee Edmund.

Suppose my husband gets hired in a tenure-track position at a university. I will not be able to get a full-time job to supplement the family income, as I might have if I hadn’t had Edmund. That’s money we could have earned, but did not.

And then there’s the future. Edmund will likely never have a job that pays above minimum wage, if that. So we will support him for our lives, and provide for his support after we are gone. Our typical children will (we hope!) go out and earn their own living, but Edmund will always be our financial responsibility. He will always need supervision (either from us or paid for by us). He will always need medical equipment.

We have 529 tax-deferred accounts set up for the education of our other two children. Infuriatingly, there is no such account to save for people who will not go to college. If Edmund has greater than $2,000 in assets to his name, he will not qualify for SSI benefits or Medicaid. The cost of support and health care and insurance without SSI or Medicaid is prohibitive even for very wealthy families. There are less-straightforward ways to provide for his future, and we do. It’s frustrating, however, that there is a disincentive to save for his future.

More than $2.5 million. When you think about it, Edmund is the equivalent of a ginormous beach house in the Hamptons that we’re paying off for the rest of our lives. I count myself beyond lucky to have him, who is so loving and kind and has taught me so much about the nature of love and suffering and happiness. I wouldn’t trade him for any typical kid. Alas, I also count myself quite a bit poorer.