Special Needs Parent Salary Calculator

For the past few years in May, around Mother’s Day, salary.com has released a report proclaiming the estimated monetary value of all of the jobs a stay-at-home mom is responsible for. It is a high amount, especially when you calculate the wage at 40 hours/week plus 1.5 times the rate for overtime, which puts the total around 92 hours per week. If only real world employers valued working moms as much.  In 2013 it was calculated at $113,568.

I did multiple web searches looking for a similar comparison for parents who also care for a child with special needs and could find nothing. If you are reading this
blog right now, chances are you are one of these parents, many of whom had to withdraw from the work force because our children required a level of care not available without a hefty price tag, if it even were to exist in your area.

I am a stay-at-home mom in charge of the many duties listed in that salary.com annual report with a valuation of over $100,00/year AND many more specialty positions that exist in the community as decent paying jobs, some even commanding a pretty penny. For example, at my house I am also the:

Special diet coordinator/chef;

Patient healthcare advocate;

Patient case manager;

Educational advocate;

Medical transport service;

Therapy assistant;

Home health care aide;

AAC training coordinator;

Novel treatment research assistant; and

Grant writer.

Well, you get the idea. Some of these positions are specific to those who have chosen to pursue biomedical treatments for their children, but the majority are applicable to most special-needs parents. Most of the above positions receive salaries that are well over $50,000-60,000/year, with the exception of support roles that average $12-15/hour, depending on geography. I am always amazed by moms I see in online groups that can break down the methylation cycle or quote gene polymorphisms — and which supplements work best — with the ease of a geneticist. You really have to be at the top of your game to get to the bottom of what will help your child improve when professionals try to write it off as “just ___” (fill in the blank here, ours is autism). I also don’t think these job titles are an overstatement of what we as parents are dealing with on a day-to-day basis, especially if you are the parent of a severely affected child who has sleeping, toileting, communication and behavioral issues.

Additional casualties of the rising epidemic are the parents who are forced to remove themselves from the talent pool of our economy because they value their children’s recovery. Or perhaps they had no choice, as paying for even a few of the above services would negate any salary they might fetch. As parents, we do it while bankrupting our own futures and the ability to care not only for our children, should they need us, but also to support ourselves in retirement. We raid our 401k plans and bank accounts and mortgage our homes because they deserve a chance at life, and insurance companies consider these treatments and therapies as “experimental.” Would you deny your child an end to their pain just because your insurance provider does not approve an out-of-network, out-of-state doctor that’s one of a precious few that can help? Of course not. We do it because there is nothing more important than our children and their future.

Here we stand, parents that are put through the daily stress of navigating the red tape of insurance companies, government agencies, school districts, and the medical establishment. Not only are we staying home and missing out on our former paychecks, we willingly spend our last dollar making our children’s lives the best they can be. I think that no “Special-Needs Parent Salary Calculator” exists because to put the costs in black and white would be one more slight. If you are one of these parents, you are probably painfully aware that to price out your services would put your value in line with that of a bank executive. And we would put that money right back into our family’s well-being instead of a private jet. (Probably an equivalent dollar amount for the combination of medical care and the retirement income we are missing.)

My severely affected twins are eight years old. As we steadily creep towards improvements, I often spy negative comments at the end of mainstream internet posts complaining about how our kids are a drain on the system, especially schools, and how the commenters resent money being diverted to cover the rising costs of special education and health care. What will happen 10 years from now, when they become adults and will most likely always need heavy support? I will be 53 years old, out of the work force for 20 years with no 401k contributions since I left. Oh, and if your child receives SSI benefits you are not allowed to have retirement savings or any assets besides your house and one car.

Caring for four children with a long list of medical issues will surely have made an impact on my health (spoiler alert:  it already has). Who will take care of my adult children? And do I even verbalize the fear I have of who will take care of me in 30 years? As long as we live in a nation where autism is not viewed as the real problem that it is — where the money is dedicated to chasing the autism gene instead of developing an action plan — we are heading for serious trouble for not only a growing segment of the future adult population, but their caregivers as well. All of these talented, hardworking parents who put their lives and dreams on hold to care for their children will also need to be considered, because we matter too. We left the work force, lost our benefits, and cashed in our futures with love in our hearts and a mission to heal our children.

When politicians block autism insurance mandates they may protect business, but they are also bankrupting the futures of not only children but their families as well. What about the siblings of affected children? When only one parent remains in the work force there is no money for better school opportunities, extra-curricular activities or even little things like going to the movies.  There is no extra money when therapies and medical treatments that aren’t covered by insurance take priority. As parents we do it willingly, but at the cost of a child that we will never know what they could have become given the chance at a private education if we had been able to provide it.

Next time a salary calculator comes up with a price for all the services mom performs don’t forget the income, opportunities, and talent lost to the nation’s health epidemic.

~ Karma

About the author – Karma is a mom to four kids that spend way too much time navigating their dirty mini-van through the urban sprawl that is metro Atlanta. She proudly supports Generation Rescue in the role of parent mentor for their Family Grant program. When asked, “How do you do it?” the answer is simple:  coffee, Belgian ale, and an odd sense of humour. She is the co-author of Evolution Of A Revolution: From Hope To Healing and is a member of TEAM TMR, a not-for-profit organisation created by the  founders of The Thinking Moms’ Revolution.