A Special Blog for Special-Needs Caregivers
Parents of special-needs children face a unique set of challenges when it comes to balancing family and work obligations.
One of my biggest fears as a journalist – other than not getting the facts straight – is that no one is reading what I write.
If your immediate response is, “Check the number of Facebook likes, duh,” I challenge you to remember the last article you “liked” that you actually read all the way through. I don’t want to be “liked.” I want to write articles that readers engage with, articles that make them think and at the very least leave them a little better informed.
That’s why I love it when readers write back. Good or bad, I get a great sense of satisfaction out of knowing that what I’ve written triggered enough emotion in another person that they felt compelled to let me know how they’re feeling.
This very situation happened a few months ago with a story I wrote for the January issue of Workforce titled, “Caring for the Caregiver.” It was about employees who care for their aging or ill parents in addition to holding down a full time job. It’s no small task, and 15 percent of the U.S. workforce is currently trying to do it. The intention was to shine light on an underreported issue and to give employers ideas on how to support these employees.
Based on the Facebook likes, it was well received.
But then I got a letter from Laura Francis, the director of marketing at River software. With patience and gratitude she informed me that while accurate, my story was too narrow in its scope.
“I really appreciated your article on caring for caregivers,” Francis wrote. “It’s an incredibly important topic we need to address in society. Unfortunately, I feel like you overlooked a huge piece of this caregiver puzzle: parents of children with special needs.”
Her note struck a chord with me. I hadn’t even considered parents of special-needs children. Worse, none of the experts I spoke with for the story brought it up, either. I did some research, and according to the U.S. Census Bureau Report, one in every 26 families reported having a child with a disability. That’s a huge number of working adults. And it immediately made me wonder what, if anything, employers are doing to help ease that burden.
So I gave Francis a call, and she graciously shared her story.
Francis is the mother of a 6-year-old son who has cerebral palsy, epilepsy and cortical visual impairment in addition to other special needs. He can’t sit up on his own. He can’t crawl. He can’t walk. He can’t talk. He can’t feed himself. He needs someone with him all the time. Francis is that someone.
She considers herself lucky, though. Working for a small company like River has been a blessing.
“They know my family,” Francis said. “I’m not just some faceless name on a list. I’ve been with the company for 16 years so they’ve been with me through all of this. They are so responsive and flexible and I think flexibility is the key for parents of special-needs children.”
Francis works from home so that both she and her husband can care for their son. But River’s contribution goes beyond that. Last year when the company was switching insurance providers they called Francis first and asked her to make sure all her doctors would still be in network. They didn’t want to make a move that would leave her son uncovered.
“They are very thoughtful and respectful and open hearted and kind,” Francis said.
The Affordable Care Act also has been a blessing for Francis and parents like her. Before the legislation was passed in 2010, Francis had a $1 million lifetime maximum benefit for her health insurance policy. GIven her son’s medical needs, they had almost spent more than half of that. The ACA eliminated lifetime maximumsand made it so insurance companies can no longer deny coverage based on preexisting conditions.
“WIth all of the health issues my son faces, we would surely have faced this problem had there not been a law in effect to protect us,” Francis said.
While Francis is grateful for all that River and government legislation have done for her, she understands that not all parents of special-needs children have an ideal working situation. Her advice to those parents and their employers is to encourage conversation and understanding.
“One of the most important things for me is having my co-workers understand that caring for a special-needs child takes a lot out of you,” Francis said. “It can be exhausting. If you come to work one day and you’re just not on your game they can understand why without making assumptions about your commitment to the job.”
For employers considering treating parents of special-needs children the same way they treat parents who are responsible for elderly family members, here’s Francis’ advice: Don’t.
“These situations might feel similar, but they can be quite unique,” Francis said. “A lot of that is why it’s easy for us to get overlooked in the grand scheme of things. We’re trying to do our jobs and keep the family running. There’s not a lot of energy left to advocate for ourselves. Having benefits and ways to communicate within the workplace is so helpful.”
So for all the employers out there reading this, don’t make my mistake. Create a welcoming environment for all employees so that those with challenges like Francis feel comfortable coming to you knowing adjustments can be made so they can take care of work and family – without compromise.