Is Raising A Kid With Special Needs Making You Broke?

Families with children who have autism earn an average of $18,000 less than those with typically-developing children, says a new study. The reason for the income divide: moms of kids with autism are too busy caring for them to make major contributions to the family bank account. Sadly, this news won’t come as a shock to many parents.

Researchers tracked household employment data for 261 families with kids who have an autism spectrum disorder, 2,921 families that have kids with other health limitations, and 64,349 with so-called typical kids, work done by the Perelman School of Medicine at the University of Pennsylvania and the Center for Autism Research at the Children’s Hopsital of Philadelphia. Moms of kids with ASDs earned a whopping 56 percent less than moms of kids with no health limitations; the dads’ paychecks were not impacted. On average, families who have children with ADS take in 27 percent less pay than those of kids with no health issues.

“Mothers are often the primary caregiver and decisionmaker, and therefore have to devote considerable personal resources to obtaining health care services for their children,” said Zuleyha Cidav, Ph.D., the lead author of the study. “It is not surprising that, because of these additional responsibilities, these women are less likely to work.”

The study only examined families of children with autism, but I’ll bet the same would apply to parents who have kids with Down syndrome, cerebral palsy, genetic conditions and other disabilities. In fact, yesterday this message cropped up in a cerebral palsy online group I’m part of: “My husband and I just had our millionth discussion about finances. We never expected for me not to work, but there’s no way I can right now with the school and therapy schedule….”

I went back to my full-time job four months after my son, Max, had a stroke at birth that caused his cerebral palsy. I work because I enjoy what I do (I’m a magazine editor) and also because I have to bring in income for my family and for the equipment and many therapies insurance doesn’t cover. Since 2009, I’ve been freelancing. Last month, I turned down a five-day-a-week gig because I need Fridays to catch up on Max’s schoolwork, paperwork (hello, insurance insanity) and take him to therapy (although I do not want others to pity me for this).

Meanwhile, I hope there’s no backlash of work discrimination against moms of kids with autism or other special needs as a result of the study. What I most want (besides more hours in a day and a second pair of hands) are companies that provide flex-time—for all parents, yes, but especially for those of us with kids who need extra care.

How about you: How has having a child with special needs affected your family’s finances?

 

From my other blog:

What Rick Santorum’s showing the world about working parents 

What happened to Max

 

Image of bills and calculator via Shutterstock

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  1. by Katy

    On March 23, 2012 at 9:34 pm

    Of course! I tell everyone that I’m a pageant mom except my kid has therapies instead of pageants! We were always extremely conservative with money–living off of one salary instead of two even when we had two incomes–but the first two years after Charlie’s birth, we were definitely operating at a deficit. I won’t go into every detail, but we were definitely choosing therapy over everything else plus we moved to be closer to our support system and to get our son into the best public school district possible.

    Like you, I don’t want people to feel bad for us AT ALL–this is a choice we made and we were happy that we had/have options available to us. It does sadden me that not every family is in a place to make these kinds of decisions, but rather they are choosing between helping their child or keeping a positive bank balance.

  2. by Amanda

    On March 24, 2012 at 7:41 am

    It is SUCH a struggle financially. And there’s so much we’d do for our daughter if we had the resources, but we don’t. It makes me crazy that she could miss out on treatments that could improve her quality of life.

    My coworkers were talking last week about getting pedicures now that it’s sandal weather. One looks at my toes and says, “your toes are always so cute! You do them yourself, right?” I wanted to say, “yes, because 1 pedicure costs a third of 1 Hippotherapy session, and we have to pay for them weekly!”

    I need Donald Trump to adopt me.

  3. by Katherine M. Martin

    On March 24, 2012 at 8:23 am

    This is a rehetorical question.
    I am the single adoptive mom of a 17 yo son with complex medical and learning needs. His dietary issues alone wreck havoc never mind the money well spent to fight for his placement, countless weeks of unpaid leave when he was hospitalized, gas to get to specialists and copays. I filed bankruptcy to protect our house – I lost my job due to my son’s issues – but he is the best thing that ever came into my life.

  4. by Krista

    On March 27, 2012 at 12:59 pm

    261 children in the study?! Seriously??? This data is not valid. The statement being made may in fact be true but the sample size needs to be WAY bigger. I hate when tiny studies like this are done. That’s the same reason so many people believe that vaccines cause autism. Let’s try doing a valid study with a decent sized control group and experiment group. Again, 261 people proves nothing.

  5. by DW

    On April 26, 2012 at 10:50 am

    I never planned to be unemployed (who does really?) but complications with my pregnancy that required bedrest caused me to lose my job (even though I was perfectly capable and ready & willing to work from home) Then factor in a lengthy hospital stay for my kid and the time needed to get them settled into a routine once discharged & the slow paring down on the amount of diff dr’s one needs to see, coupled with a bad economy next thing you know 2yrs have passed w/o a job. Then, you realize that your kid who was progressing wonderfully just all of a sudden is not..cue the addition of more dr’s, filling out of applications, waiting for appts, driving all over for interviews with specialists and another 2yrs have gone by..now you get a “diagnosis” which means what? more crazy scheduling-how does one fit trying to find a job & keeping into that? Who would hire you? What would a job pay that would actually help you get back on your feet-considering now you would need to pay someone or someplace to watch your child as you go back to work? This after putting aside your inherent nervousness as to how they will take care of & respond to your special needs child? I don’t know, but through it all,the bills & bill collectors never stop and bridging the communications gap bet insurance companies, therapy & dr’s offices is another job in of itself (unpaid of course). Never mind the regular day to day of trying to keep your home functional.
    Of course our finances have been affected negatively. We all know that the price of everything has gone up & every surcharge is passed on to the end consumer. What I find amazing is that in the US-You have to pretty much be homeless & destitute to get any type of help to try & keep your head above water.
    No one needs to throw a pity party or anything but studies like this seem pointless..how about an actual plan to just really help? A streamlined process? Insurance companies that don’t keep asking the same questions over & over,then nickel & dime you to death & try to get out of paying for things? Or do we need another 100K small case studies?

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