Time’s Up ? | 8 in 10 Caregivers, 1 in 5 Have a Child with a Disability: Will You Support Them—Or Lose Them?

Welcome back to 'Health at Work & People'! Continuing our mission to empower employees to advocate for their health at work and to build healthier workplaces, we explore the convergence of top Health Risk issues, Mental Fitness, Wellbeing, and Business Growth, reinforcing our commitment to impactful health strategies.

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Health at Work & People collaborations aim to equip employees with data insights and tools to advocate for their health in the workplace, while also helping employers incorporate best practices for a healthier workforce and sustainable business.

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I encourage us all to contribute to this dynamic resource, and share with whoever may be impacted by it. Whether you’re an expert in your field, a health advocate, or a forward-thinking employer, join us in enhancing workplace wellbeing and sustainability.

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When I was invited to speak at a recent Integrated Benefits Institute conference covering global health and benefit equity, particularly centered around caregiving employees parenting children with disabilities, it was quite a journey. This topic is not only a professional concern but also a personal one. As an advocate for pro-Ability, wearing a dual hat that aligns with both my work values and my parenting journey.

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This dual role makes me a better person, leader and effortlessly shapes what I do, inviting others—like you—to embrace inclusion, from classrooms to boardrooms. Yet, what drove me to convert a recent Integrated Benefits Institute speaking engagement into a Health at Work collaboration was the realization that I am far from alone. While over 80% of employees are caregivers, and 1 in 5 are expected to have a child with a disability.

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Empowered by Meaningful Stories and Data Insights ??

We’re addressing some critical questions.

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1 ?? What are the primary challenges faced by employees who are caregivers?

Why should employers, health, welfare and financial wellbeing providers care?

2 ?? How can leaders and organizations effectively support caregivers?

What steps can be taken to build equitable offerings?

3 ?? How can we uncover the unmet needs of caregivers?

4 ?? Path to Solution: How can organizations create a sustainable environment for all employees, including caregivers?

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1: Caregiving Employee Impact

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Approximately 80% of U.S. families have at least one employed member. When narrowing the focus to families with children under age 18, about 91.9% have at least one parent who is employed . Among these families, around 24.8% have at least one child with a disability. This means that nearly 1 in 5 employees in the workforce is likely balancing their job responsibilities while parenting and caring for a child with a disability.

When reflecting on the approximately 7.3 million students recognized under the Individuals with Disabilities Education Act (IDEA ) in the U.S., it's important to see this not merely as a statistic but as a testament to the resilience and dedication of countless families. Each number represents a unique story of a family balancing professional duties with the profound responsibility of parenting and caregiving—often without outward recognition.

Embracing this journey offers an opportunity for growth and reflection. Parents often sandwiched across generational caregiving, discover untapped reservoirs of strength and empathy, developing a deep understanding of the true meaning of inclusion and advocacy. Moreover, the experiences of these families contribute invaluable insights into the push for more inclusive and supportive policies in educational and professional environments.

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The challenges of this dual role are significant, but so too are the triumphs. Families often experience a profound sense of community and connection with others on similar paths. A priceless bond is established. This compassionate mindset can lead to powerful advocacy networks that drive change not only in their own lives but also in society at large. ?

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The journey of parenting a child with a disability is a testament to the transformative power of love and commitment. It challenges us to broaden our perceptions and advocate for a world where every individual, regardless of ability, can thrive.

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Becoming a parent to a child with a disability has unveiled the best version of myself. This journey transformed me into a relentless advocate, a care coordinator, an amateur therapist, a financial planner, and a compassionate leader — roles far beyond the conventional duties of parenting. In this hurricane of responsibilities, there's no room for the words "can't" or "impossible". Instead, I gravitate towards those who see potential, who transform challenges into opportunities for action.

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The support of a family, whether by blood or choice, is indispensable. My spouse and I, both entrenched in demanding careers, have adopted a strategy of divide and conquer to fulfill our professional and personal roles effectively. He has been an exceptional father. Through working 50+ hours a week, we've learned the art of delegation, entrusting professionals, family, and caregivers to help our child thrive, with financial planning perpetually at the forefront of our minds. Honestly, I don't think I will ever 'retire'.

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In previous corporate roles, I chose to be reserved about my personal life. Authenticity and setting boundaries must coexist harmoniously. My family's journey is shared selectively, aimed at empowering others to overcome their challenges, advocating for inclusivity in educational environments, and ensuring no one feels isolated. Moreover -as a woman and an immigrant - I did not want other leaders to treat me differently or to think that I was not up to complex endeavors. Have you felt that way?

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I count myself lucky to have encountered numerous allies along the way—brave souls challenging the status quo and redefining inclusion as the new 'normal'. The world could certainly benefit from more champions like these, moving us from ‘dis’Abled to ‘pro’Abled. ?

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First,

it's important to recognize that if you are parenting a child with a disability, you're part of a larger community—15% of students in the U.S. are reported to have disabilities.

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Second,

the spectrum of disabilities is broad, each type bringing its own set of challenges that requires distinct efforts from parents and caregivers.

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Third,

to put it into a global perspective, over 1 billion people worldwide live with some form of disability, including 240 million children.

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Connecting with 'proAbility' advocates like Dr. Michael J. Hynes has deeply enriched my path. His dual role as a devoted father and a leader in education has given him a unique perspective on inclusivity and diversity. His stories, particularly about his daughter Sadie, resonate strongly, providing heartfelt insights into the challenges and triumphs of advocating for a more meaningful and inclusive world.

My daughter Sadie has taught me more in her 11 years of life than I have learned in my past 53 years of existence. My wife Erin and I had no idea that our daughter had Down Syndrome when she was born. Sadie had to stay in the newborn intensive care unit for a few weeks and we met some of the most compassionate and amazing professionals in the world. Unfortunately, we also met others who were much better off keeping their thoughts to themselves.

I remember a doctor at the hospital telling me he was “sorry” after Sadie was born. On another occasion, a family member shared with my wife and I that “Mongoloids can be nice people ”. She didn’t mean to upset us; it was her mental model about Down Syndrome. Initially, as parents we were surprised with the multitude of closed-minded comments we came across. As Sadie grew and we brought her to restaurants, stores or in public, people would stare at her longer than one should.

I’m sharing this with you not to complain; but doing so because we began to learn how the world can perceive others without knowing anything about them whatsoever, except through the lenses of their biases and assumptions. Little did they know our little Sadie has the best sense of humor and can read on grade level like her peers. She enjoys music and hanging out with her best friends like all children do. As parents, we began to advocate for more programs in her school and for the school districts we served in.

Here are the lessons my wife and I learned from our personal lives that now transcend to our professional ones.

1. You never know what others are going through. I have a much deeper respect for parents who have children with autism, Down Syndrome, ADHD, OHI, etc. They have incredible stories to share, and we need to support them as much as their children. Neurodiversity is real.
2. Never place limits on your child or students. Don’t accept what professionals say at face value all the time. If Erin and I listened to what some professionals believed Sadie would never be able to do, her life would be so much more unfulfilled. She is flourishing.
3. In the education system I have served in for over 27 years, we need to remove the word “special education”. This word places a label on a child that never leaves them and carries a negative connotation with it. Yes, the children are “special”, but they are certainly not less than “typical children”. By the way I loath that phrase as well.
4. Inclusion is important. Integration however is critical. It’s great to be included but to be fully integrated is where the secret sauce is. Separating and segregating children is not the answer. Teach them to become independent and watch them soar!

Sadie is now moving into 6th grade. She continues to surprise people with her intelligence, humor and at times stubbornness. We are so fortunate to have her in our lives. There are other “Sadie’s” in every school in America. Are we as school leaders doing everything in our power to make our school system more inclusive and integrated? That’s for you to answer and my hope is that you strive to make that a reality. Every child will benefit from it.

With over 56% of employees serving as parents and caregivers, understanding these Caregiving challenges is crucial for any organization aiming to foster an inclusive, supportive, and productive workplace. Unlike most life events, having a child with a disability can, without adequate support, push your most talented employees out of the workforce.

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Businesses face not only the direct costs associated with caregiving-related turnover but also broader economic impacts, such as reduced productivity and increased healthcare costs. By addressing these issues proactively, businesses can enhance employee engagement and focus, reduce turnover, and improve their overall competitive edge in the market.

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The Impact of Caregiving ??

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How many of your employees are also caregivers juggling multiple responsibilities at home and work? ?? According to the recent publication "Parents Under Pressure: The U.S. Surgeon General's Advisory on the Mental Health & Well-Being of Parents ", parents and caregivers face increasing stressors throughout their lives. These include financial strain, economic instability, time demands, concerns about children's health and safety, parental isolation and loneliness, challenges managing technology and social media, and cultural pressures.

While progress is being made toward greater equity in parenthood ??, both mothers and fathers have significantly increased their parental and caregiving responsibilities. The time parents dedicate to primary childcare has risen significantly. For mothers, weekly childcare hours have increased by 40%, from 8.4 hours in 1985 to 11.8 hours in 2022. For fathers, the jump is even more dramatic—154%—from 2.6 hours in 1985 to 6.6 hours in 2022 ; one big step on parental equity direction!!! ??

For caregivers of children with severe disabilities, the demands are even greater, with an average of 53 hours per week spent on caregiving—equivalent to more than a full-time job ??, with no free weekends, imposing significant emotional and physical demands on the caregiver.

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And yet,

many employees choose not to disclose their caregiving responsibilities at work, concerned about potential impacts on their career trajectories. Among those who acknowledge their roles as caregivers, about 28% believe it has affected their professional growth. These caregivers report significant challenges such as a lack of engaging assignments leading to demotivation (54%), reduced salary increments or bonuses (50%), and constrained career advancement (46%). This perspective is explored in Joseph Fuller analysis, “How to Keep Employees Productive: Support Caregivers”

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The Professional Toll of Caregiving: How It Causes Talent Loss. ??

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1?? Workforce Participation: Approximately 73% of these families see reduced work hours or complete job cessation, predominantly among mothers. This reduction not only affects family income but also career progression and job security.

In contrast, the role of women as primary breadwinners has nearly tripled , now accounting for almost half of all families—with a remarkable 68% in Black families. ?? Additionally, about three-quarters of mothers are actively employed, highlighting a dynamic shift in workforce participation and family financial structures.

2?? Financial Stress: In the last decade, child care prices have grown by approximately 26% in the U.S. ??Over half (54%) of families with a disabled member face significant financial pressure due to the high costs associated with specialized care. This burden is often exacerbated by a potential drop in family income when one member must leave the workforce to undertake full-time caregiving duties.

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3?? Single-Parent Dynamics: Families with a disabled child are nearly five times more likely to be headed by single mothers, compounding isolation, financial and emotional challenges.

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4?? Career Limitations | ‘Motherhood Penalty ’: Mothers caring for children with disabilities are 50% less likely to attain or maintain executive-level positions.

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2: Building Equitable Offerings. How?

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Barriers to health equity and workplace inclusion often led to increased levels of health issues, disengagement, turnover, absenteeism, and presenteeism among employees.

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Health disparities aren't just a health issue; they hit our wallets too. ?? We're talking about an extra $320 billion annually in the US alone and, if left unaddressed, could cost $1 trillion or more a year by 2040.?

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Developing inclusive offerings requires a structured approach that not only addresses diverse needs but also fosters an environment of trust and empowerment. Here’s a five-step roadmap to build inclusion effectively, with practical behaviors that exemplify each step:

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1?? Stakeholder Mapping: Engage and Listen

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Start by identifying who needs to be involved. Reach out to a diverse range of employees, managers, and even external partners. Actively engage with them to hear their real-world experiences and perspectives. Make this a conversation, not a one-way survey.

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2?? Problem Identification: Focus and Define

Use the insights gathered to pinpoint the most pressing challenges. Ask yourself: Which issues impact our teams' wellbeing, and our company’s performance and sustainability the most? Focus on these and clearly define the problems to set the stage for effective solutions.

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3?? Solution Mapping: Collaborate and Innovate

Work together with the stakeholders you’ve engaged. Hold brainstorming sessions that welcome people from different departments and diverse backgrounds. The goal is to co-create solutions that are not only innovative but also feasible and aligned with your resources.

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4?? Prioritization: Strategize and Plan

Decide on the order in which these solutions should be tackled. Consider both the impact and the resources available – and test (small) that solutions are viable, impactful and sustainable. It’s about being strategic—integrating quick wins where possible and planning for long-term initiatives that may require more time and investment.

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5?? Implementation: Execute and Evolve

Put your plans into action. Monitor the outcomes and be ready to make adjustments. This step is about empowerment, measurament and support— removing obstacles, making sure everyone involved has what they need to succeed.

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Building trust goes beyond simply asking questions; it involves approaching interactions with the right intentions—genuinely seeking to uplift others. It requires transparent communication about priorities, a firm commitment to follow through on actions, and an openness to receiving and responding to feedback.

In my experience validated by several studies, creating effective and inclusive health, welfare and wealth employee benefits requires broad collaboration. I've partnered closely with our HR, ESG, and DEI teams, alongside business, global benefit brokers, consultants, insurers, multinational pools, and global underwriters. If you have a captive manager, they can be a key resource as well.

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Together, we’ve successfully captured the voice of our employees, gained market and business insights, and effectively closed the gaps between our initial offerings and our core design principles. Ensuring that our actions are not only well-intended but truly impactful.

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How important is it to create environments where diverse employees can thrive and drive business outcomes?

This 麦肯锡 study sheds light on this question, revealing that companies with diverse executive teams are more likely to outperform their peers by 9% in profitability, and companies face a significant financial downside if they lack diversity, with those in the bottom quartile being 66% less likely to achieve above-average financial returns.

This analysis, incorporating insights from Dame Vivian Hunt , Sundiatu Dixon-Fyle , Celia Huber , Maria del Mar Martinez , Sara Prince , and Ashley Thomas, emphasizes the increasing economic imperative for creating conditions that favor executive-level diversity.

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3: Uncover Unmet Needs

Employees Caring for a Child with Disabilities

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Imagine walking into your office and knowing that one in five of your colleagues are juggling more than just work deadlines and daily tasks. They're also navigating the complex and often silent struggle of raising a child with a disability. That's 20% of your workforce, from the minds engineering our future to the hearts managing our talents.

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These aren't merely colleagues. They are key members of our team, often wrestling silently with challenges that could lead to burnout or compel them to step away from their careers entirely.

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So, let’s pause and think: What does parenting truly involve? It’s more than just the basics of nurturing and education; it’s about instilling values, providing emotional support, and adapting to unique challenges every single day.

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Meet Taryn (Debold) Lagonigro , Co-Founder of Extra Lucky Moms , an inspiring organization that champions the empowerment of caregivers in the workplace. I had the pleasure of meeting Taryn at the National Down Syndrome Congress , where she spoke passionately about supporting parents of children with disabilities. Taryn's dedication shines as she advocates for these caregivers to be recognized not just for their challenges but for their extraordinary strengths.

?? Time Management Skills: Parents of children with disabilities are experts at multitasking—balancing therapies, appointments, and everyday demands. This likely means they are efficient at prioritizing tasks. While they may need flexibility for appointments, working with them ensures the job gets done to a high standard.

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?? Commitment: The "why" behind their work is deeply personal. They are dedicated to excelling in their job, not only to contribute to the company but also to provide for their family. Their focus and motivation are unwavering because every hour away from their family holds weight.

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?? Resilience: Parents of children with disabilities often face high-stress situations, with some studies even likening their stress levels to those combat veterans . A tough workday is unlikely to shake them. This resilience makes them capable of handling high-pressure scenarios, though it’s important not to overload them unnecessarily.

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?? Inclusion & Diversity: These employees bring valuable perspectives, fostering greater inclusion through their lived experience. Encouraging them to share their stories can help create a more diverse and resilient workplace environment.

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?? Empathy: Their personal journey has likely shaped them into empathetic individuals. By offering the right support, employers create the space for employees caregiving for an individual with disability to elevate workplace culture, fostering stronger team connections, growth mindset and understanding.

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?Taryn continues by sharing that,

While the value that a parent in the disability community brings to a company is immense, it’s essential to recognize that it’s a partnership to ensure their success. Supporting these employees through flexibility, understanding, and the right resources helps unlock their full potential. Extra Lucky Moms

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For those caring for a child with a disability, these responsibilities expand significantly.?

Drawing from personal experiences and insights shared by others such as Lindsey Topping-Schuetz , Elle Meza , and Kelley Coleman , as well as numerous studies , the role of parenting a child with a disability extends far beyond traditional caregiving. These parents often find themselves as health coordinators, therapy facilitators, financial planners, accessibility specialists and advocates navigating equitable access to health, education and workplaces.

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In a very engaging conversation with Kelley Coleman , she shared powerful insights from her recent book “Everything No One Tells You About Parenting a Disabled Child ” that emphasize the necessity of equitable access. Here is an extract from her book, addressing the question “Why do I need to know about disability rights?”

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For those caring for an adult with a disability, knowing disability rights is essential.

Accommodations for disability are fundamental rights, deeply embedded in civil rights, as recognized by federal law .

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Beyond parenting. Sandwiched Generations.

There are approximately 63 million parents living with children under the age of 18 in the United States, and there are millions of additional caregivers who hold the primary responsibility for caring for children.

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I recently had the pleasure of speaking with Serena H. Huang, Ph.D. , a leading expert in people data analytics, founder of Data With Serena?? . She is also a passionate advocate for inclusive leadership and mental health awareness in the workplace. Here is Serena’s reflection:

Unmet needs for employees caring for children with disabilities are substantial and span across health, wealth, and wellbeing. Here's how these challenges manifest:

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Employees often face challenges in accessing timely, specialized, and coordinated healthcare for their children and others they care for, with these difficulties often compounded by delays in their own healthcare due to caregiving demands.

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How much energy, productivity, and wellbeing are sacrificed while navigating delays in specialized healthcare?        

?? Wealth

The financial burden is significant, with families facing high out-of-pocket costs for disability care. ?Caregivers incur direct costs such as medical care and therapies and often face unexpected expenses like out-of-network providers, specialized equipment or home modifications.

For instance, each American household caring for a child with a disability shoulders an estimated annual income loss of $18,000 ($1m+ over the child’s life). And it can be far more difficult for families with a child with a severe disability – for example, annual income loss in caring for a child with severe autism is estimated at twice this amount, or $36,000 per year ($2m+ over the lifetime), costing up to $1M or more.

According to the National Council on Disability and Princeton Department of Economics, families with disabled members spend significantly more on healthcare, average $30,500 a year, which impacts their ability to save for retirement.?

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We also need to navigate complex financial planning issues, from specialized estate planning to securing long-term care. This financial strain is exacerbated when one parent reduces work hours, less opportunities for career advancement or exits the workforce entirely to manage caregiving responsibilities, impacting the family's overall financial stability.? ?? This isn’t just about money—it’s about time, mental energy, and the overall employee wellbeing.

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?? Wellbeing

Without timely support, the dual demands of work and caregiving can lead to lack of mental fitness, career disruption, and social isolation . Caregivers often lack: sufficient time, personalized-relevant-time knowledge, and safe talking space support, which impact their mental, social and emotional health.

“Caregivers don’t always disclose their responsibilities because they are afraid of the consequences or the negative impact they could have on their careers,”

Says Joana Coelho in the article Supporting Caregivers in the Workplace .

“Building a culture of support, empathy, collaboration and belonging will help to promote openness among employees to allow them to talk about their problems. This is the first step needed for companies to give effective support.”?

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I recently had the pleasure of reconnecting with Dani Kimlinger, PhD, MHA, SPHR, SHRM-SCP , CEO of MINES and Associates , during the SIIA international captives conference. Dani is phenomenal leader, intellectually humble, known for her vibrant, effective and insightful approach to organizational health and mental wellbeing. Spending time with her and Bob was an absolute joy! ?

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I had the pleasure of meeting Heather Sachs a few years ago at the National Down Syndrome Congress (NDSC) and recently reconnected with her on an advocacy forum. Heather’s insights are both authentic and deeply impactful, especially when it comes to supporting caregivers. Her compassionate and practical approach to addressing the challenges caregivers face has been truly eye-opening.

When organizations deliver radical flexibility, compared with delivering flexibility only around when and where employees work, the percentage of employees defined as high performers increases by 40%.

Performance improves in part because radical flexibility provides employees with a much-needed sense of autonomy, and in part because it dramatically reduces the risk of burnout.

The Secret to Productive Employees? A Radical Shift in Work Flexibility
Gartner | 2023        

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4: Path to Solution | Health, Wealth & Wellbeing

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Here’s an invigorating truth: with the right support systems, over 80% of your workforce, including the 1 (in 5) employee who are caregivers to children with disabilities can not only manage their challenges but actually be engaged and present at work, as they feel valued and recognized - fueling both their productivity and satisfaction.

Leveraging insights from our earlier discussions, how can we strategically prioritize and tackle the unmet health, wealth and wellbeing needs of our employees? Consider a targeted, multifaceted approach that addresses these needs efficiently and effectively:

Path to Solution: Health ???

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?? Enhance access to Specialized Care: Bridge the gaps in accessing specialized healthcare by providing healthcare advocates and up-to-date information on care options for children. ?? This initiative could involve partnerships with healthcare plan administrators, legal experts, care coordinators, and mental health service providers.

National Special Needs Attorney Groups, include:

?? Special Needs Alliance 
?? National Academy of Elder Law Attorneys (NAELA)
        

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?? Training and Resources: Offer targeted training for parents and their managers that covers emergency preparedness, disability rights, workplace accommodations, and flexible scheduling. ?? Incorporate training that enhances compassionate leadership and supports the reintegration into work.

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Flexibility should be paired with a performance assessment system that focuses on outcomes rather than adherence to a traditional work schedule. If you prefer to tackle a project during off-hours—perhaps when it's quieter and everyone else is asleep—why shouldn't you? 

What truly matters is the quality of the work and its timely completion. Awarding efficiency and results over conventional presence in the workplace.
        

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?? Mentorship and Support: Facilitate mentorship programs and interactions with experts to empower caregivers with the knowledge to navigate healthcare complexities. ??This includes practical and actionable education for employees on health, wealth and welfare benefits, with community building, expert navigators, and advocacy training to deal with medical systems effectively.

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This could be your employee! ?? Imagine losing at least five hours each week to healthcare bureaucracy—this is the reality for one international pilot at a major U.S. delivery service.

At a recent disability advocacy event, I listened as numerous working parents shared their struggles with securing proper healthcare for their children. They spoke of endless hours spent on the phone with insurance providers, fighting denied claims, dealing with high deductibles, and wrangling over prior authorizations .

Among them was a pilot from a well-known U.S. delivery service, who vividly described the frustration and helplessness they felt battling the healthcare system. Each week, they lost at least five hours per week to these issues—time that could have been spent with family or focusing on work.

We sat down for a few minutes to discuss potential solutions. It became clear that employer support could play a pivotal role in easing this burden. Their struggle was real! We explored how they might approach their employer to advocate for better support systems that could help navigate these healthcare hurdles more effectively. The goal was simple: to ensure that employees could remain focused and productive at work without the added stress of healthcare-related obstacles.

Affordability and Care Access

[Path to Solution: Health ??]

?? Subsidized Care Options: Ensure access to affordable and subsidized specialized care, covering therapies, devices and medical needs essential for children with disabilities.

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?? Proactive Care: Promote targeted essential check-ups, and specialized mental fitness support for caregivers. ?? Encourage caregivers to maintain their health alongside their caregiving responsibilities by emphasizing life experiences that can be created as a result of investing in regular essential health screenings, healthier lifestyle habits, and easy access to mental health care.

Rethinking Design & Health Equity ??

Are healthcare plans unintentionally creating barriers to care and worsening health?

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A concerning trend: 2 in 5 adults have delayed or skipped essential care due to costs .?

?? Imagine this: 30% of these individuals could be among your workforce, with over half reporting their health conditions have worsened as a result.

?? The affordability of healthcare remains the primary barrier, with nearly half of working-age adults delaying or skipping needed care due to high out-of-pocket costs.

?? In the US, despite 90% of the population having health coverage, 20.4 million people face unpaid medical debt, with many owing over $1,000. In total, Americans owe at least $220 billion in medical debt. Health disparities exacerbate these financial burdens, costing the US an extra $320 billion annually. Without intervention, this figure could exceed $1 trillion by 2040. [Delloite Consulting , KFF , American Hospital Association ]

?? Inequities in the US health system limit access to affordable, high-quality care and lead to avoidable costs that impact societal wellbeing.

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Hence, a question for us all. As we design plans with focus on cost mitigation - with high deductibles, coinsurance and copays, we must ask ourselves: Are we creating too many barriers to care, and unintentionally promoting a healthcare system that leans too heavily on emergency care rather than focusing on prevention, empowerment and proactive measures?

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Path to Solution: Wealth ???

Addressing the wealth-related challenges faced by caregiving employees requires a multifaceted approach that recognizes the complexities of their responsibilities and the profound impact on their financial stability. Caregivers often grapple with escalating costs associated with child care (??26% increase over the last decade in the US), healthcare, and education, alongside employment and income insecurity—factors that significantly contribute to caregiver stress. In 2023, a staggering 66% of parents reported feeling overwhelmed by financial concerns, compared to 39% of other adults.

Here are a few support systems for employers and employee benefit providers, aimed at easing financial stressors, helping caregivers effectively manage their financial health alongside their caregiving responsibilities and mental fitness:

?? Risk Mitigation Child Disability Protection: Time is of the essence!? Unexpected costs can hit employees from day one.? Work with insurance companies to develop or offer products that cater specifically to families with disabled children, covering areas not typically included in standard policies, such as specialized therapy or adaptive technology.

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How often have you been asked to assist an employee during an emergency, only to find yourself navigating complex legal challenges and avoiding setting unintended precedents?

It's in scenarios like these where innovative solutions come to the fore. Consider the introduction of child disability insurance by Juno in the U.S. market—a first of its kind.?During my conversations with Hall Kesmodel , I was excited to learn about this caregivers' child disability protection, as Juno not only addresses a significant gap in caregiver support but also prompts us to reconsider our approach to risk and benefits in the workplace.

???? Could this forward-thinking model inspire new strategies in other areas of your organization?

??? Emergency Funds: Create or expand hardship funds specifically designed to support employees with urgent financial needs due to unexpected disability-related expenses.

?? Legal Assistance and Advocacy Services: Offer access to legal assistance programs that provide support with navigating disability rights, particularly in education and healthcare. ?

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?? Tailored Financial Wellness Programs: Develop financial wellness programs that fit within your caregiver benefits ecosystem, and provide personalized guidance on managing the high costs associated with disability and health care. ?Consider partnering with financial planning experts specializing in advice for families with special needs, providing essential financial strategies and services.?

In my previous role, I had the opportunity to work alongside Lauren Uranker and her team at Ayco , crafting personalized financial well-being solutions for around 90,000 U.S. employees. We uncovered actionable knowledge gaps in financial wellbeing and, by co-creating solutions directly with employees, we significantly boosted their financial literacy. ?? This collaborative effort led to a double digit improvement in their savings rates, better utilization of FSAs and HSAs, and smarter budgeting and estate planning choices—truly a rewarding experience for everyone involved.

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Keith has also highlighted the significant advantages of accommodating employee needs. According to his team, such accommodations can lead to a variety of benefits, including reduced complaints of discrimination, increased productivity (a 40%?increase ?in high performers), decreased absenteeism (30% reduction ), stronger recruitment (reported ?by 77% of recruiters), and increased retention (between 9% and 15% ).? ?? In sum, actions that help caregivers can also drive cost savings and a push towards profitability.? These best practices and accommodations can help prevent unlawful discrimination and help further the EEOC 's mission of advancing equal employment opportunity for all.?

Building upon this, Miriam Zylberglait (Dr.Z) ?? , affectionately known as Dr. Z. Triple Board-Certified Physician in Internal Medicine, Geriatrics, and Obesity Medicine, Author of the book The 3G Cycle of Life , and the Founder of Virtual Wellbeing MD - Dr. Z , shares:

"Good intentions are not enough. What isn't formalized as a rule,  policy or law disappears the moment you change jobs or managers. ? The system needs clear, up-to-date, and standardized legal regulations. This can’t be seen as a favor or act of kindness — it must be a clear normative.  Otherwise, we risk perpetuating discrimination indefinitely."        

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Financial Planning Pitfalls.

Here's a quick tip on financial planning for parents of children with disability: A common concern is ensuring your child is cared for if you are no longer around. If you're considering leaving money directly to a child with a disability, reconsider this approach. ?? In the US, direct inheritance can potentially disqualify them from receiving essential welfare benefits.? Instead, consider setting up a special needs trust .

Caregivers first step in disability care planning: Take a look at the key elements shown below and see how they can help improve your family’s financial situation.

If financial wellbeing-coaching-advisor offering is not part of your employer benefits package, consider leveraging community resources or exploring what your Employee Assistance Program (EAP), caregiving employee benefits, retirement plan administrator, or advocacy organizations can offer.

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?? Enhanced Dependent Care Flexible Spending Accounts (DFSAs): Expand the scope of Dependent Care FSAs to include expenses such as specialized education and therapy services. ???This account allows employees to set aside pre-tax dollars to pay for eligible dependent care services, such as after-school programs, babysitting, and specialized day care that may be necessary for children with disabilities. The advantage of using pre-tax dollars helps reduce the overall cost of care, as it lowers the amount of income subject to taxes.

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?? Health Savings Accounts (HSAs) and Flexible Spending Accounts (FSAs) are also effective tools for employees caring for children with disabilities. HSAs are suitable for long-term savings with their rollover feature and tax-free growth, ideal for managing ongoing medical expenses. FSAs, while typically use-it-or-lose-it, help cover immediate medical costs and can be used within a year, easing the financial strain of disability care. Both accounts use pre-tax dollars, providing significant tax relief for caregivers.

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?? Specialized Transportation Subsidies: A Big Time Stressor for Caregivers! Provide subsidies or reimbursements for transportation costs related to medical and therapeutic appointments for children with disabilities.

We've explored essential care aspects like health, finance, and insurance, and looked into wealth management through financial planning. Now, let's turn our attention to addressing challenges related to time scarcity, career opportunities and feelings of isolation ??—key components of overall wellbeing.?

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I’m privileged to share the story of Alex Steinberg , a dear former colleague from Aon and a growth-minded leader whose life has been deeply influenced by his experiences growing up with a sister with disabilities. This relationship has not only shaped his compassionate outlook but also his approach to leadership and personal growth.

Growing up with a sister with disabilities has profoundly shaped my life. From a young age, it was evident that my sister faced significant challenges socially, academically, and in many other areas. My parents adopted distinct roles in her upbringing—my father as the unwavering supporter and my mother as the relentless motivator. This dynamic enabled my sister to exceed all expectations: she celebrated her bat mitzvah, learned to drive, earned an associate degree, and now works as an assistant at a daycare facility. ?

These accomplishments were a testament to the strength and unity of our family. Despite her progress, my sister still faces moments of struggle and overreaction. Patience and guidance are essential.

As I’ve grown older, my responsibilities towards her have increased. Whether it's fixing the internet connection, walking the dog on her difficult days, or managing her finances as her trustee, I've learned that compassion and support can help people with disabilities achieve remarkable things. Equally important is finding a community of individuals who understand and share similar experiences.

For many years, my grandmother was my sister’s best friend and rock. After her passing, I worried my sister might not find another support system outside our immediate family. However, this loss, combined with our encouragement to be more social, led her to connect with others facing similar challenges. Today, she is more socially active than I am. Ultimately, it's crucial never to underestimate anyone. Inclusion is vital; my sister simply wants to be thought of and to participate. ? She is the kindest, most thoughtful person I know, and anyone would be fortunate to call her a sister or friend. ?

Her unique perspective has even influenced how I approach obstacles in my own life. By listening, being kind, and being present, we can learn from and significantly impact others in ways we never imagined. ?

Path to Solution: Wellbeing ???

Enhancing Support for Employees Who Are Caregivers

What if? ??????

?? Employee portals were redesigned to be truly people-centric, deeply resonating with the lived experiences of caregivers?

Imagine transforming these platforms into vibrant communities filled with tailored resources, interactive support groups, and direct access to essential services. ? This would create a comprehensive support network that goes beyond mere information sharing, genuinely addressing the unique challenges faced by caregivers.

A user-centered portal, equipped with an AI-powered chat tool, could personalize support for employees who are parents and caregivers. This platform should focus on solving relevant problems by providing healthcare information, advocacy resources, insurance details, leave policies, caregiving support, and mentoring. Additionally, it should offer skills training, career advancement opportunities, and tools for mental fitness and care management—ensuring that all resources are actionable and easily accessible.

?? Mental Fitness, and Safe spaces were established within workplaces where caregivers can share tips, experiences, and mutual support — fostering meaningful connections?

Offering specialized mental fitness services, tools, and workshops tailored to caregivers is a vital step forward. Equally important is ensuring caregivers have the opportunity to access and benefit from these resources, which help build emotional awareness and resilience.

By creating dedicated safe spaces for caregivers to connect and share, we can enhance their sense of community and self-compassion while improving their ability to manage caregiving challenges through the exchange of lived experiences and mutual support.

?? People managers were equipped to be compassionate leaders who understand how to navigate emotions in the workplace, thereby building trust and enhancing team dynamics?

Training managers to adeptly handle emotional nuances can significantly improve team dynamics and productivity. When managers are equipped to support emotional wellbeing , they not only foster a nurturing work environment but also improve team performance by up to 30%.

?? Having a compassionate company culture truly makes a difference. Learn from Bob Carlson 's experience as a new parent and senior executive at a large technology organization. ??

The right—and wrong—ways to respond by Christina Bradley , Lindy Greer and Jeffrey Sanchez-Burks. Great resource!!!

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In a conversation with Bob Carlson , a seasoned technology and healthcare executive and father of a young adult with Down Syndrome, he shared his personal experience navigating work-life balance complexities while working at IBM .?

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Having the support of my manager, who understood the situation and provided flexibility, was key to my success at IBM. It empowered me to be there for my family and my child, and increased my loyalty and dedication to the company.

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Reflecting on the corporate culture at the time, he noted how flexibility was granted in an organic, personal way, despite the lack of formal caregiving policies:??

IBM was very understanding beyond what many companies are today. There were no formal rules like PTO or parental leave, but my boss gave me the latitude to do what was necessary, which created more flexibility in an unforeseen circumstance.

Bob's insights also touched on the importance of coaching managers to recognize and respond to caregiving needs:??

The value of having a people manager who sees you as a human being and recognizes your contributions while providing flexibility in tough personal circumstances cannot be overstated. ?? It drives trust, commitment and enables employees to focus on being their best, both at work and in their personal life."

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What if? ??????

[continued section | Path to Solution: Wellbeing ??]

?? New ways of working were embraced, and career structures redefined to better integrate 'essential freelancers' into core functions?

As more strategic roles are filled by highly skilled - 'essential freelancers', redesign career pathways and fostering an inclusive, flexible work culture can especially benefit caregivers.

?? Flexible working hours, remote work options, and paid time off evolved into something truly meaningful for caregivers and all employees?

Offering flexible work arrangements, and specialized time-off policies tailored for caregivers is essential ! Consider options for a phased return to work following parental leave or events that lead to dependent disability, supplemented by mentoring and career development opportunities.

Take it a step further... allowing employees to use some of their leave to attend caregivers-related conferences could be incredibly beneficial. I can personally attest to the value of these diverseAbilities conferences : they offer a wealth of knowledge from medical experts and educators, provide networking opportunities, and even allow siblings to meet others facing similar challenges.

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Take it a step further... Why not align these initiatives with our company’s ESG goals to strengthen our commitment to inclusion and belonging ? Expanding volunteering , mentoring, and donation matching programs that support disability care organizations can make a powerful impact. Studies show that 74% of employees say volunteering improves their sense of purpose and mental fitness, while companies with strong volunteer programs experience a 57% increase in employee engagement.

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I have a special connection to Sarah 's story, as we’ve shared many conversations about organizational mental fitness long before the birth of her children. I’ve had the privilege of watching her journey unfold, and her strength and advocacy have been truly inspiring. Her story is a testament to resilience, the power of speaking out, and the importance of support for caregivers.

I just recently?had my 2nd child nearly 7 months ago. My first will be 3 in December. However, my journey to have children began 5 years ago. Once I decided to get pregnant at 34, I had 2 concurrent miscarriages. The first one I felt blindsided by because no one talks about them. I had no idea how common they were. I wasn't prepared for it. The 2nd wasn't as surprising, but it was still devastating. I was working with one of the top fertility doctors in NYC when the 2nd happened, and he had no idea why it had happened. Women's healthcare is such a black box still. I was now turning 36 and was left with some challenging decisions given there wasn't a hard reason as to what was going on. I chose to go the IVF route to improve my chances of a successful pregnancy as well as to buy myself some insurance for baby #2 - I didn't want to go through all of this again - especially with the pressure of my age. The process was such an emotional roller coaster, but we did get a successful pregnancy. However, the challenge didn't stop there. I was extremely sick for both my pregnancies, and I had challenges with postpartum anxiety?after both of my babies. So needless to say, these 6 years have been some of the most challenging I've ever had.

All the while I was going through this, I was working at Headspace . It is really tough as a woman to want to show up every day and prove yourself when you are not at your best. After my miscarriages, I decided to become extremely vocal about my challenges. I was going to be a part of breaking the stigma around this conversation. I wanted other women to know that these trials and tribulations are normal, and there is nothing wrong with us when things go wrong. It was amazing to be at a company that gave me a platform to do so. I advocated for more support with our benefits department, sending our CHRO and the benefits team a long letter describing the costs that I had to pay out of pocket and the process I had to go through. I highlighted that I was in an extremely privileged?situation to be able to do this, and that this would not be accessible to many other employees. The following benefits cycle, our team bought Carrot Fertility for employees. I don't know if this was because of me, but I was really delighted to see some steps being taken.

When I look back over the years, I am most grateful for the supportive leaders I had during these times. I was given so much flexibility?in my schedule to work when I could and take time when I couldn't. I got a decent maternity leave of 16 weeks, and I was given space and grace upon my return. There are always areas for improvement in this area, but working from home with a flexible calendar was the most valuable piece of my experience.

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5: Conclusion

As we reflect on how to empower caregivers within our workplaces, especially those with children who have disabilities, it's essential to ask ourselves: How can we develop a work environment that not only supports but also values the unique contributions of every employee?

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The statistics paint a stark picture of the urgency: eight in ten are caregivers, and one in five employees has a child with a disability, and globally, over 1 billion people live with some form of disability. These individuals face costs that can be up to ten times higher than those without disabilities. This is not just an issue for individual workplaces; it's a societal challenge that requires innovative and inclusive responses.

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True inclusion goes beyond simply accommodating needs, ticking boxes or one-off initiatives— It's about making a commitment, day in and day out, to understand and feel the challenges others face — it's about creating adequate safeguards, transforming our work environments to fully acknowledge, embrace and benefit from the diversity of experiences. This means crafting support systems as varied as the people they aim to help and recognizing that each statistic represents an individual whose wellbeing is essential to the productivity and vibrancy of our workplaces.

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So, can we make a pledge? ?? every action we take to support our employees, particularly those juggling caregiving responsibilities, is a step toward creating a more inclusive, productive, and compassionate society. Isn't this the kind of workplace—and indeed, world—we all strive to achieve?

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By shifting our perspective from viewing caregiver support as a liability to seeing it as a key component of corporate resilience and innovation, we can turn challenges into opportunities for growth and forward-thinking leadership. This change is about more than policy; it's about cultivating a workplace culture where every employee feels valued and supported to flourish .

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My energy tank is full as I finish this research, and 'Health at Work & People' collaboration. So many voices were shared, and so much wisdom was gained. Let’s keep this conversation going. With diligent efforts and positive intentions, we can work together to transform how we view caregivers, and support disabilities— shifting the narrative from ‘dis’ Ability to ‘pro’-Ability, where potential is recognized and nurtured. ??

Guidelines ??

‘Health at Work & People ’ collaborations are promoted through LinkedIn , a social initiative, extending the reach of my work to help employees advocate for their health in the workplace and assist employers in navigating significant health and people challenges with data-driven and actionable insights.

These collaborations are fueled by the generous volunteering of time from advocates, health, wellbeing, and industry experts — including my own.

How to use the People, Health & Benefits newsletters?

For Individuals:

?? Share with your CHRO and business leaders for evaluation of risks, best practices and action. Build your knowledge from health experts insights included on these newsletters.

?? Comment on our LinkedIn posts to share how your employer and colleagues are supporting your health. Tell us what's working for you.

?? Help amplify our voices by reposting.

For Employers:

?? Review your current practices against best practices, identify gaps, and engage in a collaborative discussion with your HR and Benefits team. Focus on evaluating population impact, prioritizing budget and timelines, and planning implementation.

?? If you're implementing impactful strategies for your employees, share your experiences and insights by commenting and sharing on our LinkedIn post.

?? Repost our People, Health & Benefits editions if it aligns with your organizational values.

For Healthcare, Employee Benefits and Wellbeing Solutions Providers:

?? Assess employer best practices, spot areas for improvement in your solutions, and initiate a dialogue with your clients to evaluate problem to be solved, impact, set priorities, and implement changes.

?? Share relevant research, data insights, including how your company solutions are making a difference by engaging with our LinkedIn community.

?? Repost our content to amplify its reach.

Sources ??

1. The challenges of caring for children who require complex medical care at home: ‘The go between for everyone is the parent and as the parent that’s an awful lot of responsibility’
2. Parents spend an average of nine hours a day providing palliative care for children at home and need to maintain an average of five life-saving devices.
3. What federal education data shows about students with disabilities in the U.S.
4. The Personal Costs of Caring for a Child with a Disability: A Review of the Literature
5. Great Places to Work: Wellbeing Programs | Top 100 Companies
6. When Your Employee Feels Angry, Sad, or Dejected . The right—and wrong—ways to respond by Christina Bradley , Lindy Greer and Jeffrey Sanchez-Burks
7. Parents Get Depleted by Rick Hanson.
8. Healthy Outcomes: How employers' support for employees with caregiving responsibilities can benefit the organization . Harvard Business Review By Joseph Fuller
9. Highly Skilled Professionals Want Your Work But Not Your Job by Diane Gherson and Lynda Gratton
10. Impact of child disability on parental employment and labour income : a quasi-experimental study of parents of children with disabilities in Norway.
11. Global and regional prevalence of disabilities among children and adolescents : Analysis of findings from global health databases.

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Disclaimer ??

This collaboration may include a non-exhaustive list of health, wealth and wellbeing solutions. If you would like to discuss potential solutions tailored to your population, feel free to get in touch.

All information posted on this article is merely for educational and informational purposes. It is not intended as a substitute for health professional advice.

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Children with disabilities often work hard to accommodate themselves to an inaccessible world that excludes them. 

But they are not problems that need to be fixed or changed. 

Disability is part of the diversity of human experience: Functional limitations manifest in the life cycle of every one of us. 

The extent to which children with disabilities are able to lead happy lives depends on OUR own willingness to confront barriers to change. 

UNICEF ?