The Hidden Cost of a Child’s Severe Disability: Why Employers Should Add Child Disability Insurance

When Ashley went in for her 20-week ultrasound, she was thinking about baby names and a gender reveal party. “It was supposed to be one of the most exciting days of my life,” she recalled. “But instead, a doctor walked in and said very bluntly, ‘There’s something severely wrong with your baby’s heart.’ Just like that, I wasn’t embracing the joys of becoming a mom—I was preparing to fight for my child’s life.”

Over the months that followed, Ashley lived in the cardiac ICU, sleeping in a chair beside her newborn daughter after open-heart surgery. She battled to understand complicated medical decisions, monitored every vital sign, and called insurance companies daily. “We had to empty our 401k at 29. Five years of savings gone. I spent the last two weeks of maternity leave fighting billing errors instead of enjoying the little time I did have with my daughter at home,” she said. “And I still had to go back to work because I couldn’t afford to pay COBRA and didn’t want to lose our health insurance.”

Ashley’s story isn’t rare. It’s just rarely told. And for millions of working parents like her, a child’s serious illness or disability sets off a life-altering cascade of emotional, logistical, and financial challenges—challenges that existing benefits simply aren’t designed to support.

The Financial and Emotional Cost of Raising a Child with a Severe Disability

Across the U.S., millions of working parents face the profound challenge of caring for children with severe illnesses or disabilities while sustaining their careers. These families confront relentless logistical, emotional, and financial stress from caregiving—often in silence.

Severe childhood illnesses and disabilities range widely, from rare genetic disorders to chronic physical and neurological conditions. Yet public support systems remain severely inadequate. Even with health insurance, families incur substantial out-of-pocket expenses for children, averaging $48,000 annually, including lost income, specialized therapies, equipment, and more.

How Severe Child Disability Affects the Workforce

Raising a child with severe disabilities can cost over $1.5 million across their lifetime. This impact extends to the workforce too, with research indicating that:

• 73% of primary caregivers raising a child with a severe illness or disability quit or reduce hours¹

• Women are 12x more likely than men to be the primary caregiver and leave the workforce^1‍

Those who remain employed often experience caregiver burnout, chronic stress, and exhaustion—factors that silently erode productivity, engagement, and overall well-being. What’s more, many employers never hear about these challenges—because parents often choose not to share. Whether it’s fear of stigma, a desire to protect their role at work, or the need to preserve a sense of normalcy, silence is often a form of survival.

Taken all together, a child’s severe illness or disability is the largest uninsured financial risk parents face–and today in America, they face it alone. Families caring for a child with a rare disease face an annual financial gap of $45,700—costs that fall entirely outside of traditional medical coverage.

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Hear another family’s story on the impact of raising a child with a severe disability.

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The Coverage Gap Families Face—and How Juno Closes It

Products like critical illness insurance offer relatively small lump-sum payouts upon a limited set of specific diagnoses or events. While these can be helpful, they often fail to address the ongoing, long-term nature of severe childhood disabilities and illnesses.

• Limited Scope:
  
  • Critical illness policies typically cover a predefined list of conditions, which do not address many rare or complex disabilities.
  • Most policies focus on adult conditions, not those of children and young adults
  • Policies generally do not cover disability from accidents or injuries.
    
• One-Time Payouts:
  
  • Lump-sum payments, while useful, may be quickly depleted by years of ongoing expenses.
  • They don't provide the sustained financial support families require for long-term care.
• Smaller Total Benefits:
  
  • Critical illness policies typically provide much smaller total benefits
  • For children, many plans provide either no or limited coverage, often just 25% of the total benefit
• Lack of Personalized Support:
  
  • Traditional supplemental policies rarely offer the personalized guidance and resources parents need to navigate complex care systems.
  • Families are often left to manage overwhelming logistical and emotional challenges on their own.

At Juno, we’re on a mission to fix this gap in protection for families. As parents ourselves—including some raising children with disabilities—we’ve seen how invisible and overwhelming this burden can be. That’s why we created a new kind of insurance: one that offers sustained financial support and personalized guidance for families navigating the long-term challenges of a child’s serious illness or disability. 

“We founded Juno because we wanted a financial safety net and support if our own children developed a severe disability or illness. We worried what would happen to our families, our finances, and our careers if something were to happen to our kids. ”

 - Jordan Epstein, Founder and CEO of Juno

Why Forward-Thinking Employers Support Caregiving Parents

The best leaders think beyond the everyday. They prepare for the life events that reshape work, family, and finances. Employers can prepare for the moments that change everything: a diagnosis, a long hospital stay, or a sudden need for care.. Providing long-term financial protection and tailored family  support when an employee’s child becomes severely ill or disabled is not only compassionate but a core component of financial wellness and for building an inclusive, equitable, and productive workforce. Companies that invest in proactive protection:

• ‍Enhance Retention and Talent Attraction: Offering targeted benefits such as child disability insurance reduces turnover and attracts committed talent.‍
• Improve Productivity and Engagement: Reducing employee financial and caregiving stress boosts overall workplace performance.‍
• Strengthen Company Reputation: Forward-thinking organizations that offer disability-inclusive employee benefits and address comprehensive well-being become employers of choice.

It’s not about checking a box. It’s about making things just a little more manageable when life gets hard.

How Juno’s Child Disability Insurance Supports Working Families

Juno's child disability insurance offers families proactive financial protection. Founded by parents who understand these challenges firsthand, Juno provides:

• ‍A lifetime cash benefit–based on coverage level and severity–up to $500,000, delivered monthly, to cover out-of-pocket expenses not addressed by health insurance.‍
• Expert, personalized guidance and resources to help parents confidently navigate care needs, from medical advocacy to specialized support services.

Partnering with Juno is easy, with a seamless experience for employers and minimal time to implement. Juno equips companies with comprehensive resources to launch this important benefit swiftly and effectively.

From Survival to Strength: Ashley’s Journey to Hope

Ashley’s story didn’t end in the ICU. Today, her daughter is thriving—a tenacious, compassionate child who’s become an ambassador for the American Heart Association, raising over $15,000 to support kids like her. “She calls kids with heart conditions ‘kids with special hearts,’” Ashley shared. “She wants to be a cardiologist when she grows up—to fix other kids’ hearts.”

The challenges didn’t end when they left the hospital. Ashley still battles ongoing medical costs, navigates yearly cardiology visits, and carries the emotional weight of everything her family endured. “It took me years to get my mental health back under control,” she said. “I ignored it for the sake of getting her through it—and then had to go right back to work like everything was fine.”

If Juno had existed then, she believes it would have changed everything. “I could’ve spent my time being a mom, not fighting insurance companies. I wouldn’t have had to empty my 401k. I would’ve had space to recover.”

Still, she holds tight to the gratitude that got her through it. “When you’re so close to losing them, every little moment becomes precious,” she said. “Nothing I do professionally will ever compare to the joy of watching her live the life she fought so hard to have.”

It’s Time to Lead: Support Working Parents with Juno

Addressing this hidden struggle requires action—not just awareness. Implementing Juno’s child disability insurance is a straightforward decision with profound impact, positioning your company as a leader in employee well-being and workplace innovation.

Now is the time to step forward and ensure that no employee must choose between their child’s health and their career.

Join the more than 75 leading employers who are already transforming workforce support—schedule a call with Juno today

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¹https://www.caregiving.org/wp-content/uploads/2020/05/NAC-RareDiseaseReport_February-2018_WEB.pdf

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