The Cost of Raising a Special Needs Kid

~ Laura

Jeff Howe at CNN.com talks frankly about the expenses of raising a kid with severe autism. It's a hard article to read, because the dude is still firmly stuck in the grief phase.

Howe's five-year old son has huge needs. He isn't potty trained. He has major behavior problems. He has major cognitive impairments. That part of his story is straight forward and indisputable. 

He discusses the financial obligations for raising a son with such huge needs. The child needs 24 hour care, so they employ a nanny who costs $24,000  per year. They spend $1,800 on diapers. $5,400 goes towards medical costs for their son. He says that they don't have the energy to do after-school activities and therapy for him. If they did, their expenses would be even higher. They are worried about the cost down the road, when his schooling is done. Full-time care facilities for people with extreme disabilities could be $100,000 per year. 

Those numbers are straight forward and indisputable. The government has some programs to help out with respite care and therapy, but as Howe says, it's a major pain in the ass to find those programs. Sometimes the reimbursement for services is so minimal that it's barely worth the time to fill out all the paperwork. 

What makes Howe's story so messy is that he is still firmly in the grief phase of special needs parenting. He is still very upset that his son is struggling with basic life skills. That's an understandable grief. But he's also grieving the life that his family won't have, because his son is different. This is selfish grief and, really, needs to end fast. 

Howe defines a "normal" life as one where "both partners pursue their dreams, attend social events with our friends, and our daughter receives the sort of two-on-one attention that would be her lot if we hadn't had Finn." It means a hefty college savings for his older daughter, so she can attend the college of her choice. 

This is the "normal" life that all us smart, dues-paying, elite college attending people believe that they are owed. There are two dominant "normal" upper-middle class lifestyles. One is dual working family with pristine daycares, or the single earning family with SAHM who is the pillar of the community. It involves a nice house in a nice community and one vacation per year to a hotel on an island with a swim-up bar and water slides of the kids. People like us feel entitled to this lifestyle, because we're smart, worked hard, and made lots of sacrifices in our 20's. Everybody else has that, so we should, too.

If you have a special needs kid, you might not get that. One person may have to end the perfect career to manage the schooling, health care, and paperwork that goes along with the kid. Your kid may not be able to travel to the fancy hotel on an island. You can't be a pillar of the community, if your child doesn't attend a local school and can't go to church. 

That part of his story has to be very grating to people who live outside the upper-middle class bubble. Nobody is entitled to the college of their choice, a house, a fulfilling career, and a nanny. Honestly, he needs to get over those disappointments pronto.

But let's get back to the part of his story that needs remedy. A family with a severely impaired child does have major needs. They need help from behaviorists who will teach the child to control tantrums, to not self-injure, to not destroy family property, and to stay within the home. There are basic safety issues. I know kids who have to be locked in their bedrooms at night, because they'll run out of the house at 3am and get lost. It's very hard to get the state or the school system to provide this help outside of school hours. 

Parents of severely affected, special needs kids do need sanity breaks. Howe's family paid $24,000 per year for a nanny. That seems like a lot for a kid who is in school from 9 to 3 every day. I didn't quite understand if his wife worked a paying gig or not. Some states provide something called "respite care" for those needed sanity breaks, but I've heard that the paperwork was monumental, the waiting lists are long, and the actual respite is too short. 

Uncovered medical expenses are a large problem with raising special needs kids. Insurance companies are experts at avoiding paying for therapy. There are very strict rules in New Jersey, but they still don't pay. At this point, our outside school therapy needs are pretty minimal, but others aren't so lucky. 

I wish that Howe had written this article without the grief and the entitlement. Those sentiments muddy the story. The real story is that parents do need more financial support from the government to help meet the monumental expenses of raising a special needs kid. 

Related: My guest-blog post at the Atlantic. 

Published by Laura

12 thoughts on “The Cost of Raising a Special Needs Kid”

  2. We only qualified for $5000/year respite funding (which was reimbursement) and I had to complete a mountain of paperwork every year to qualify. I gave up after the second year of frustrating headaches: it really wasn’t worthwhile to battle for this and then struggle to front the money with a hope of reimbursement!
    The cost opportunities of raising a special needs kid are staggering and the weariness that battling bureaucracy brings is incalculable. Chronic underemployment and financial fears are hitting families at all levels. Autistic Youngest isn’t even severely autistic but we’ve warped our lives enormously to ensure she’s taken care of now and into the future.

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  3. I dunno – he doesn’t seem any more entitled than your average UML Cambridge guy (which is plenty, sure, but that’s who he is). And his grief seems appropriate to me, given the child’s age and suggested level of disability.
    People can give up some things and adjust – you lose your house and end up in an apartment. You move from your dream community to someplace you can actually work and afford to live. You work your way through school and have no time or money to socialize or shop or eat much beyond oatmeal and ice cream for four years. All of these things take adjustments but they are doable.
    But it seems to me that autism, when it’s that severe, asks you to give up almost everything forever – not just hopes and dreams for your child, but normal family experiences, social life, inclusion in your community, professional growth, so much of what makes life worthwhile. And I don’t think most of us can let those things go without a fight and some prolonged and complicated grief. (or maybe it’s just me – I’m still a little wistful about what I missed during those years and for us, it was a temporary adjustment mostly, although we didn’t know that then)
    I found the article heart-breaking, frankly. The realization that they had to choose between the help that allowed the family a semblance of a normal life and saving responsibly for their son killed me. And they are a family of means.
    I know a few families with kids who are very severely affected – the kids attend a full-time behavioral program, but still need aides at home during most waking hours because even after years of first-rate intervention, they need an adult’s full attention to be safe and non-destructive. Without an aide, there would be no dinner cooked, no homework supervision for sibling, no after-school activities, no soccer games or school plays watched. I don’t know if the author’s family is in the same category but if they are, I hope they keep the nanny, for their sake.

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  4. I was raised a Quaker, and one of my memories from childhood was a disturbing story from American Friends Service Committee work in Viet Nam – they were fitting amputee children with prostheses, getting them back to their families. They would check in a few months later: “He died”. The parents had decided for the sake of their other children, that caring for that kid was too much. There was a fair amount of reporting during the aftermath of thalidomide of Belgian families killing their kids. I remember several times seeing stories of moms who were caring for severely disabled kids at home in New England calling the police to report that their kids had drowned in the bathtub while they were caring for their other kids in the front of the house.
    We are staggeringly wealthy as a society to be able to afford severely disabled kids. In recent history, our predecessors could not. Many of Gosnell’s wealthier patients – the ones who he and the missus aborted for cash on the weekends in the nicer part of his clinic, when the help was not there – were women who had wanted pregnancies and discovered near the end of their terms that the kid would be severely disabled.
    The slope to “life unworthy to be lived” is right off to the right, I see it. Still every day I am grateful that my kids are in the normal part of the spectrum, with a dash of ADHD to keep me humble.

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  5. (long rambling comment to come. Sorry in advance.)
    Jonah came home the other day depressed, because all his friends are going to Europe this summer and spent the winter at Vale. He thought we were poor, because we can’t do those things. Every day, I’m grateful that we moved to this wealthy town, because the schools are so much better, but then we have to deal with that stuff. Jonah and I had a long chat about what it means to be poor and how we were very, very lucky to have this, that, and the other thing.
    Perspective is important.
    “But it seems to me that autism, when it’s that severe, asks you to give up almost everything forever – not just hopes and dreams for your child, but normal family experiences, social life, inclusion in your community, professional growth, so much of what makes life worthwhile.”
    Yes, autism kills a lot of dreams and plans for a normal life. We only dealt with relatively minor stuff, but still it did screw up my professional goals, kept us isolated, and made a whole lot of experiences a lot more complicated. And I was very, very upset for a long period of time. I’m not judging the author of this article, because I was in a similar position a few years back.
    I had to learn that some people have it worse, to be grateful for everything that I had, and to be more creative about creating a “normal life.” Once I got over all that grief, I was able to be more effective as a parent and as an adocate for others. I see others get stalled in the grief phase and they are permanently miserable people.
    Caring for a person with special needs is incredibly expensive. I just wanted the author to focus on that, and that message got lost in all his sadness. He probably should be putting pressure on the school district to cover after-school therapies, which would ease up on the babysitting expenses and help the child be less destructive at home. Other things may just have to be given up: a dual career family where one person doesn’t bring in much money and weekly social events.
    When Ian was having his worst problems, we still brought him everywhere. We took him to ballgames. When the sun was irritating his eyes and he couldn’t sit down, I spent the whole time walking with him back and forth in the shady food court area. Steve stayed with Jonah in the stands. We took him to retaurants, but not ones with strong fishy smells. We wen to the movies, even though we had to sit in the seats until the very last credit left the screen, because his hyperlexia was in high gear. We took him to Jonah’s concerts, but let him play his DSI with earbuds to cancel out the loud sounds. It’s possible to live a normal life, just one with adjustments.

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  6. dave s.,
    I remember one of the Christmases I spent with my in-laws in Canada, the cover story was about a Canadian mother and father who gassed themselves and their (autistic?) son with carbon monoxide over the holidays.
    I couldn’t find that particular story online (it was probably around 10 years ago), but I did turn up this more recent Canadian story about a divorced couple and the eventual murder-suicide of the father and the 11-year-old autistic son.
    http://www.cbc.ca/news/canada/edmonton/story/2011/11/15/edmonton-.html
    “The boy was prone to violent outbursts and staff were either leaving because of his behavioural problems or because funding would run out. One doctor suggested the child was too difficult to handle and should be given up for adoption.”
    “[The father’s] eyes were glossed over. He wasn’t human,” Caputo [the father’s common-law] said, recounting her husband’s first visit to the lockdown group home where they were told Jeremy would have to be transferred. “It’s like he snapped. He didn’t say a word, not one word.”
    “Before that, Jeremy began showing improvements in 2008, Caputo said. He was able to stay at a private facility the government was funding at a cost of $32,000 a month. He was there on weekdays and was tended to by two workers.
    “But Caputo said when the province moved Jeremy to a group home, her husband shut down emotionally. She said his behaviour became zombie-like.”
    “Bostick was $90,000 behind in payments for Jeremy’s care when he took his and his son’s life.”

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  7. “Jonah came home the other day depressed, because all his friends are going to Europe this summer and spent the winter at Vale. He thought we were poor, because we can’t do those things.”
    Funny!

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  8. “When Ian was having his worst problems, we still brought him everywhere.”
    My first take on reading the link was that I was missing something that always comes through very clearly in 11D, Leelo and his Potty Mouthed Mom, and JennyAlice’s blog: how very much you love your children. Then, I thought, perhaps, that lack I was seeing was that the article was written by a Dad, and not a Mom, and that the way that he’s trying to express his love is by providing material goods for his children, all of them.
    It’s also just possible that they’re in a different stage of acceptance. But, I also think that there’s a difference in the way people approach unexpected tragedy (and, tragedy here doesn’t mean greek tragedy or metaphysical wrought with meaning, I’m including job loss, money loss, disability, death, everything) in their lives. There are many people who seem to spend a lot of time thinking “why me?” while others seem to accept, “why not me?” and go on with their lives. That was part of Laura’s summing up of our discussion on job loss: that there’s no way to arrange your life to avoid unfortunate outcomes; you just have to cope.

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  9. I just got an email from E’s psych about how there is a trend with insurance companies to refuse payment for neuropsychological evaluations saying they’re not medically necessary. (Apparently, our insurance provider is switching to a new mental health group on July 1, and she wants to book his re-eval sooner as a result.)
    So, is this good public policy? Is it decreasing resources to the moderately disabled (E is functioning about as well as he has been, though I anticipate difficulties next year because kids with AS do not respond well to changes like going to middle school) and diverting resources to the needier (i.e., E when he was 7?).

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  10. I didn’t mind hearing about the sadness or difficulties. I thought it provided important context to the dilemma of paying for the nanny so the family could have a life versus saving for the child’s care later on.
    I agree that at some point, it’s necessary to accept and move on, but my kid was fathoms milder (never destructive, super easy to take in public, affectionate, funny) and I surely wasn’t there when he was five. Also – I agree perspective is helpful, but that’s harder when you are the family that have it so bad you make everyone else feel lucky.

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  11. I didn’t see anything wrong with his article because I wasn’t reading it strictly for the quantitative facts. What I liked about this article was that it had a personal, human touch to it. So many articles are either/or -just statistics or all about the emotional burden. This mixes both because that’s what life it- it’s messy, it’s chaotic, there is no one way to categorize where we are in life -whether we’re still grieving and going through the insurance dance, or if we’re in a good place with our children’s disability. It’s not a neatly wrapped sentiment, it’s honest and raw that way. It shows the general public who may not be going through something similar just how it can be for some folks. Every person’s experience bringing up a child with a special need is different, all the feelings people experience are real and valid.
    Mr. Howe is entitled to feel the way he does. He loves his child, but he may be still struggling with coming to terms that his child is not as he originally perceived, to call that selfish is not fair, and frankly rude in my opinion. He is honest about those feelings. I don’t know any parent who has a special needs child who hasn’t once or twice, or more felt just utterly mournful of the realization of what life is really going to be like. It’s not our place to tell them when they should simply just “get over it”.

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  12. Nicely said cw. I respect Mr. Howe for bein g truthful about his situation. I have met so many parents like myself raising special needs children and they never show their true human side. I guestion them more so.

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