Work-Life Balance For Parents Of Children With Special Needs: How Organizations Can Help

More than 14 million children in the US have special needs, according to the National Survey of Children’s Health conducted between 2021 and 2022 by the Maternal and Child Health Bureau. This means that approximately one in four families care for a child with special needs. Special needs is an umbrella term for children experiencing chronic physical, developmental, behavioral, or emotional conditions and requiring more care and services than other children. Due to the more intense care demands, parents of children with special needs often see no other choice than to stop working or to work fewer hours.

Those parents who hold full-time jobs find themselves in an ongoing grind, trying to meet work expectations while balancing additional care demands that are typically invisible to employers and colleagues. There is still a stigma around disabilities, making a parent of a child with additional needs think twice before sharing their home situation with their boss. It is not surprising that the mental health of those parents is significantly worse than the health of employed parents of ‘typical’ children.

Data from the National Survey of Children’s Health suggest that 56 percent of mothers and 48 percent of fathers caring for children with special needs report being in sub-optimal physical or mental health, compared to 37 percent of mothers and 33 percent of fathers who do not have children with special needs. Most parents who juggle work and care for a child with special needs do not even think about work-life balance. They are too busy trying to keep their heads above water. But it does not have to be this way. If we understand the pain points better, organizations can provide more effective support.

What Work-Life Balance?

In 2023, I surveyed 274 people in North America as part of a research project on work-life balance. When asked what they found most challenging about finding a balance between their roles, one parent of a child with special needs aptly wrote, “What balance?” Another parent wrote, “Balance for me is getting through the day without a meltdown (either from myself or my son).”

Although care demands vary depending on the disability, a couple of challenges stand out for caregivers of children with special needs. A first challenge is frequent health care appointments, such as visiting specialists, counselors, and occupational therapists. Those appointments are usually scheduled during regular business hours and thus conflict with jobs that follow a typical 9–to–5 schedule. A second challenge is finding childcare. As pointed out by research led by Professor Julie Rosenzweig from Portland State University, many regular daycare centers lack specialized instructors who can effectively care for children with disabilities.

Financial strain is another concern for parents of children with special needs. While it is more challenging to maintain a regular job due to the additional care demands, the medical expenses for their children are expensive, leaving those parents in a catch-22. A study published in Family Systems & Health found that more than half of parents of children with autism spectrum disorder and an intellectual disability reported financial difficulty and having to stop work to care for their child.

Caring for a child with special needs comes with additional worries – about the child’s development, whether they will find a connection with peers, or what their future looks like. For some, those worries come on top of handling behavioral difficulties, such as tantrums and aggression, that take an emotional toll. In a study led by my co-author, Professor Charles Calderwood from Virginia Tech, we asked parents of children with special needs to report daily how challenging they found various family experiences, ranging from helping children complete homework to managing tantrums, not listening, and resolving disagreements. The more family challenges parents encountered on a day, the worse their mood and the less satisfied they felt with their work-life balance.

How Organizations Can Help

Work can be a lifeline for parents of children with special needs. Work offers not only financial stability, but also a respite from family worries and care tasks. Organizations also benefit if they can prevent parents from quitting or taking a job below their skill level, as they retain talent and avoid the costs associated with recruitment and training. Here are some ways organizations can support parents of children with special needs.

• Offer (onsite) childcare with instructors qualified to care for children with a variety of abilities. Finding suitable childcare is one of the most significant stressors for parents of children with special needs. Mid-sized to large organizations can alleviate this concern by offering care centers.
• Increase the number of paid days for family care. Whereas the FMLA is a step forward, this leave is unpaid. Given the financial strain many parents of children with a disability are under, taking unpaid days off is not always an option.
• Offer flexible work arrangements. If offering paid family care days is not an option, parents are greatly helped by flexible work hours and the ability to work remotely. This flexibility enables them to complete their work tasks while also managing their children’s appointments. Many parents who care for a child with special needs will seek out employers with this flexibility and not even consider 9-to-5 in-office jobs.
• Counseling and social support. Work can offer a break from home that some parents crave – the last thing they might want to talk about is home. But at other moments, it can be incredibly comforting to find a sounding board at work. A counselor or an understanding supervisor can make a significant difference for parents coping with the challenges of raising a child with special needs.

Providing paid family emergency days and flexible work arrangements only works if a company truly supports these options. No employee will use such a policy if managers or colleagues disapprove of it, thereby halting their career progress. Given the number of parents caring for a child with special needs, it seems time for a change in mindset, one that is inclusive of employees who face unique care challenges at home. Even if the focus is on the dollar rather than social responsibility, organizations can differentiate themselves and attract talent by offering a culture that genuinely supports employees with diverse family lives.