Talking about money is a taboo in our culture, but sometimes the lack of available information leaves families bewildered when they find themselves in unusual circumstances. Nobody plans on having a child who has a disability, but life doesn’t always play out the way we expect.
A few years ago, my husband and I found ourselves facing a mountain of medical bills for our son who had been diagnosed with autism. As many parents do, we connected with as many services we could without worrying too much about the price tag or the personal cost. Every parent wants his or her child to thrive, and the costs of necessary interventions are insignificant if it means that their child is afforded the opportunity to live a happy, fulfilling life. Yet, demystifying these costs can help families plan and help us all be more effective advocates for families who find themselves raising a child with a disability.
Some of the costs associated with raising a child with a disability are obvious and easy to measure, while others may not be as apparent. An article in the Journal of the American Medical Association estimates that the cost of supporting a child with autism across the lifespan is approximately $2.4 million, more than a typically developing child. Adaptive technology, special therapies, medication, and specialists all come with a price tag, and it’s not uncommon for insurance companies to deny services that would benefit the child, leaving parents to foot the bill. A couple of years ago, Humana denied our son access to group speech therapy, a service he desperately needed at four years old as he was just beginning to talk. We were billed for those sessions at the rate of $112 per hour, and spent more than $6,160 out of pocket in total that year.
If a child requires a special school to accommodate his needs, the cost of tuition can run anywhere from $10k-14k in the Baton Rouge area. Keep in mind, tuition does not include copays or deductibles for the myriad of therapeutic services provided throughout the day. The same is true of summer camps or childcare over school breaks. Accommodations and specialized care usually means a higher price tag. The autism camp our son will attend this summer costs almost double what a traditional camp costs.
Special needs families have to consider financial areas that are more magnified than the typical family. Coordinating a date night or a vacation can seem almost impossible. Local mom Kodi Wilson, whose son requires round-the-clock nursing care, says, “Even planning a simple date night with my husband requires significant coordination of a team of professional and specially trained caregivers.” Then there’s also the cost of gas for driving around to various appointments and overnight accomodations associated with specialized care that’s not available in Baton Rouge. The financial toll can add up quickly.
Financial costs are not the only costs that a family raising a child with a disability might incur. There are also opportunity costs. Taking a child to therapy and medical appointments, coordinating care and hospitalizations, or working with the school system can mean significant time away from work. Many parents raising a child with a disability find themselves unable to work full-time. If they are able to work full time, they are less likely to be promoted or seek career advancement opportunities. Unfortunately, many parents find themselves in a sort of lose-lose situation when it comes to balancing work and their child’s needs. They need to work to help with the many financial demands that result from their child’s disability, but working impedes their ability to be fully engaged in their child’s care. Employers may perceive parents as being checked out at the office when really they are doing their best to manage the stress and demands in their personal life. On the other hand, teachers, doctors, and therapists may believe parents are not committed if they have to reschedule appointments or show up late when in reality, they may just be trying to keep their jobs.
Finally, there are costs that are impossible to measure at all. Many parents raising a child with a disability develop significant health issues of their own as a result of the stress. The time and energy spent fighting insurance denials or driving to appointments is time and energy that can’t be spent on other things—like hobbies, relationships, or self-care. The experience of raising a child with a disability can feel very isolating and overwhelming, leaving many parents feeling disconnected from their friends and loved ones.
In my own experience, the emotional and physical costs often feel more overwhelming than the financial ones. Despite these many costs, several families raising a child with a disability also become engaged advocates, heroically fighting to ensure that what little safety net our government provides for people who have a disability is not ripped out from under them too.
The good news is, while these costs can seem insurmountable, there are many ways you can help provide some relief even if you can’t make a significant financial contribution. Here are a few ways that you can help—offer to drop off dinner, provide childcare, clean their house, do a load of laundry (or 12), offer to run their errands, give them an Amazon or meal delivery gift card, treat them to a “friend date” and talk about anything other than their child’s disability, get involved in disability rights advocacy work, send them a note of encouragement, and most of all…love them and their child fiercely. ■