My husband and I have been married for 24 years. We have three children with various disabilities. Our sons have Autism, and two kids have ADHD and several autoimmune disorders. We are constantly dealing with doctor appointments, therapy appointments, medical bills, and service meetings, to name a few. My husband has always done everything he could to ensure he was doing everything possible to provide for his family’s needs.
However, our family is not a typical one. We have concerns, stressors, and financial issues that many other families don’t have. For our purposes, let’s look at one of the primary disabilities in my household – Autism. How much more does it cost to raise an Autistic child than a neurotypical child? How does that affect employment opportunities for us as parents? What would I, the mom of disabled children, like to tell employers about how to retain good, hard workers like my husband?
Family Support Costs
The most recent information I found on what it costs to raise a neurotypical child vs. a neurodiverse child is from October 2018. With inflation being a vast, worldwide problem in 2022, I bet these numbers have only increased. In October 2018, it cost $240,000 to raise a neurotypical child to the age of 18 (legal adulthood). At that time, it cost anywhere from $1.2 – 2.4 million to provide for an Autistic child’s lifetime care (many Autistics require lifelong help). Staggering, isn’t it? It’s essential to remember that there are hidden “costs” in caring for a disabled child aside from the financial.
There are costs in time, as well as social and emotional costs for the parents. We spend much time on the phone or at appointments with various service providers to get what our children need. Most of us lost many of our friends when our child’s needs came back and center. We have sacrificed our health so our children can meet their needs. With most studies indicating that Autism cases continue to rise, it makes sense to assume that someone in your workplace has a loved one with Autism – perhaps even several someone. Families like ours are not such an anomaly.
The Great Resignation
Have you heard or read about this phenomenon? It’s been all over the news. Since May 2021, millions of Americans have quit their jobs. 4.5 million left their jobs in March 2022 alone. This is happening primarily because the Covid-19 pandemic has caused people to reevaluate their lives. If I could distill it down, the main reasons people are leaving their jobs for other opportunities boil down to 3 things: they want higher wages, work-from-home options, and better benefits including family support through platforms like Vitalxchange. And these are precisely the three things I would like my husband’s boss to know.
Higher wages are a no-brainer. Who wouldn’t like to make more money? But higher wages may be necessary to succeed in life these days. Generation X (my generation) is the first generation in which children might not be better off financially than their parents were at the same age. It is even worse for Millennials, who have more student loan debt and higher housing costs and make 20% less than Baby Boomers at the same time in their lives. Add that to the rise in Autism cases and the average lifetime care cost for those children, and you can probably see the issue. We don’t take family vacations or live in a mansion. We drive used cars. There are not many places to cut back.
Work from Home
Working from home eliminates the commute to work, saves money on gas, and reduces the effect on our climate. It also allows parents to have some flexibility in their schedules. With work-from-home options, we can divide and conquer doctor appointments, school meetings, insurance company issues, and service provider meetings. I urge bosses to reconsider eliminating the work-from-home option we may not have realized we needed so badly until the pandemic left us with little choice. Caring for our disabled children for the past 20+ years became a full-time job in itself for me. I hadn’t the time nor energy left to give to a job, let alone the salary to justify paying for childcare. It was cheaper to stay home with my children. While I wouldn’t trade that time with my kids, there are genuine financial, social, emotional, and overall health hits I had to take because of this decision.
Family Support Benefits
Lastly, benefits packages have been the determining factor in whether to accept one job offer over another for us in the past. Bosses should consider that the benefits they offer are part of the overall compensation package. It shows employees how much their time and well-being mean to you and your company. Can people afford to use it if you provide only high-deductible insurance if they need it? Speaking from experience, probably not, although families like mine have no other choice. Can you offer better options? What other benefits can you offer that would add value to your overall compensation package that are directed to caregivers like Vitalxchange? Are there any health and well-being services you can offer – healthcare benefit coordinators for employees with medically complicated dependents, access to legal and financial help, pet insurance, child care, elder care, etc.? The possibilities are endless.
Supporting Families with Disabilities
Times have changed. It’s not your father’s economy anymore. Disabilities are rising (Long Covid, Autism, autoimmune disorders, etc.). People want to feel like the work they do matters. The price of the “American Dream” has gone up substantially. You can be part of the solution by listening to what your employees need for family support. Many people are hurting these days financially. Those of us with disabled children are feeling the financial pinch. You can do something to help. In return, you will be able to hire and retain quality employees. It’s a win-win situation
Suzanne Shaft is a VitalGuide on Vitalxchange, A digital platform that empowers and enables parents to make informed decisions & engage actively in their child’s care by providing them personalized parenting ‘prescriptions’ that matches their needs. Check out Vitalxchange’s employer page for more information on how you can provide family support for your employees who have children with disabilities.