The challenges faced by full time caregiving parents, specifically those who care for chronically ill, disabled children, or children with other special needs, too frequently go unnoticed by the rest of society. What some may consider simple or tedious - like school drop-offs and bedtime routines - can be lengthy, exhausting, and demanding for these parents. Leaving home often presents a significant challenge, often requiring the transfer of heavy medical equipment, and many public spaces, like playgrounds or malls, remain inaccessible. On top of that, these parents must learn how to navigate bureaucratic red tape, many of whom make acquiring basic accommodations or support for their child and family beyond difficult.
As parents learn how to navigate these obstacles, much of their own mental health and overall needs deplete. In the midst of what can feel like daily obstacles, there’s often little to no time left for work, rest, or simple moments of connection. Even learning how and where to access support can be a challenge. In addition, parents often struggle with internalized shame or compassion fatigue, further exacerbating feelings of isolation. Yet so many of these caregiving parents, most of them women, remain invisible to society.
It is imperative that these parents not only feel seen, but the rest of society become educated on the realities of full-time caregiving for children with complex needs. In doing so, we can begin to create systems that give back to those who give so much.
The Invisible Workforce
According to a 2020 report from the AARP and the National Alliance for Caregiving, nearly one in five Americans have provided care to either a child with special needs or an adult in the past year. Johns Hopkins Medicine defines a caregiver as someone who supports another person in meeting their daily needs. These responsibilities can include bathing, dressing, feeding, transportation, grocery shopping, housework, assisting with mobility, preparing meals, dispensing medications, and coordinating with medical staff.
As you might imagine, being a full-time caregiver for a child with complex needs is a job in itself. Their second job: being an advocate for their child. Beyond fulfilling their daily needs, parents must also learn how to navigate access to equitable care. An example of this includes speaking with teachers, therapists, doctors, etc. to ensure their child receives appropriate schooling accommodations. Some schools, especially those lacking in resources, might not be able to provide the accommodations needed to ensure the child receives an equitable educational experience. For others, public school isn't always a viable option, forcing some parents to find alternative educational solutions for their children. From the beginning, this job requires persistence, advocacy, and resilience. To support these parents, we must educate ourselves on the “hidden responsibilities” of being a full-time caregiver.
According to the research, female caregivers face larger economic burdens than men. Some of these challenges include taking less demanding jobs, leaving the workforce, or losing job-related benefits. This can lead to financial instability as well as a loss of fulfillment and connection. Despite the very real burdens of caregiving, reaching out for support may initiate internalized shame. Additionally, parents may be cautious about vocalizing their worries due to fear of stigma and how their child may be treated or perceived. All of these factors contribute to the invisibility of caregiving and the importance of acknowledging the weight of the role.
The Emotional and Mental Health Toll
Full-time primary caregivers for children with complex needs are especially vulnerable to mental health challenges. Being a full-time caregiving parent can feel like being “always on.” On top of worrying about their loved one, the difficulty of navigating barriers can create feelings of inadequacy, guilt, and powerlessness. Additionally, there is often a significant reduction in personal time. This can lead to neglected self-care, time away from friends, and even a loss of one’s sense of self. The chronic stress that accompanies being a full time caregiver for a child with complex needs can also hinder a parents ability to perform certain duties. This can lead to feelings of guilt which further exacerbate mental health challenges.
As you can see, being a full time caregiver comes with significant challenges, many of which can trigger a cyclical and toxic stress response. By building awareness, we are not only helping to stop this cycle, but acknowledge to these caregivers that we see them and we care. But seeing is not enough, we also need to talk about and push for societal change that supports the wellbeing of the child and their parents.
Navigating Systems and Bureaucracy
From 2015 to 2020, the number of families reporting difficulty coordinating care rose from 17% to 21%. If caring for a child with complex needs was not hard enough, navigating bureaucratic systems can leave parents feeling as though these systems built to help them are only hurting. On top of learning how to access and advocate for essential services, parents must also deal with overwhelming and often never-ending piles of paperwork and forms. Some of the barriers parents face in navigating these systems include transportation struggles, appointment costs, provider shortages, confusing jargon, and language barriers for families who don’t speak English as a first language. For those in under-resourced communities, the challenges are even greater. Research shows that low-income families of autistic children are more than twice as likely to struggle with getting advice about services, and often face limited insurance coverage on top of it.
What makes this journey especially difficult is that parents must first figure out what their child needs before they can even begin the fight for access. It is our societal duty to bring awareness to these challenges as well as fight for changes that make accessing basic services and necessities easier for parents and families.
The Gendered Reality
According to the World Journal of Psychiatry, up to 81% of all caregivers are women, who spend as much as 50% more time providing care than men. A Fall 2023 survey of 1,354 New York State residents revealed that 66% of women identified as caregivers compared to 34% of men. Nearly half reported household incomes under $75,000, and 65% were balancing caregiving with paid work. Despite these sacrifices, most—65%—felt the state does not provide enough support for unpaid family caregivers.
Deep-rooted gender expectations play a role in perpetuating the message that caretaking is considered “women’s work.” This not only leads to the work being disproportionally shouldered by women but also discourages men from stepping in.
To foster a more equitable system, actions must be taken on a systemic level. Stronger workplace protections, financial assistance, and public policies can support in building the narrative that being a caretaker is an essential labor that requires responsibility being shared fairly.
What Support Really Looks Like
What are actionable ways in which we can support these parents? When we refer to change- it must go beyond words. At work, this could look like flexible hours, remote options, and expanded family leave. Opportunities that foster education and connection are also critical, including programs which offer counseling, skills workshops, and support groups. To reduce financial strain and increase equitable access to essential services, health insurance reforms should be conducted to ensure families are able to receive the support they need. Similarly, direct financial assistance and funding to reduce waitlists for essential services like transportation, housing, and personal care can facilitate additional aid.
By raising awareness, we convey to the caregivers of children with complex needs that self-care is not an act of selfishness or sign of defeat, but critical to them as well as for the sustainability of the care they provide. Patricia Smith, founder of the Compassion Fatigue Awareness Project, emphasizes taking breaks, delegating tasks, setting boundaries, and seeking support as examples of ways to combat chronic stress and avoid compassion fatigue.
Conclusion
Supporting caregivers is supporting families. A tireless and often invisible job, is it critical our culture reflect caregiving for what it is: an essential, skilled labor. These parents deserve to be seen, heard, and supported. Caregiving is a shared responsibility, yet too often falls solely on the shoulders of the family. We must go beyond framing caregiving as “heroic”, but take concrete steps toward actionable change, communicating to these parents and their children that we see them, we’re listening, and we’re ready.