Nila Kartika Wati
Helina Josephson, a 55-year-old resident of Canaan, New Hampshire, represents a demographic that is frequently overlooked in the American healthcare and social policy landscape: the disabled caregiver. Having retired in 2017 due to a debilitating autoimmune disease and chronic pain, Josephson’s daily life is a gauntlet of physical challenges, including "ice pick" headaches—sudden, stabbing sensations—and severe arthritis in her hips. Despite her own medical needs, Josephson serves as the primary caregiver for her 80-year-old mother, Rohana Miller, who suffers from dementia and diabetes. This situation, characterized by Josephson as "running on fumes," highlights a critical but often invisible reality where those requiring significant medical support are themselves the primary support system for others.
The narrative that caregiving is a one-way street—flowing from the healthy to the infirm—is increasingly being dismantled by new research and lived experiences. According to a landmark report from the Lurie Institute for Disability Policy at Brandeis University, approximately 36 percent of family caregivers in the United States have a disability themselves. This statistic challenges the foundational assumptions of national caregiving strategies and reveals a systemic failure to provide inclusive support for a population that is disproportionately represented in the caregiving workforce.
The Intersection of Personal Disability and Elder Care
For Helina Josephson, the transition to full-time caregiving occurred last year when it became evident that her mother could no longer manage her diabetes safely. Living together has meant that Josephson’s own recovery and maintenance routines—such as physical therapy, rest, and consistent pain management—frequently take a backseat to her mother’s immediate needs. The cognitive decline associated with dementia adds a layer of emotional and physical exhaustion; Miller often struggles with basic sequential tasks like dressing or eating and can become confused or agitated.
The logistical demands are constant. Josephson must monitor her mother’s insulin levels around the clock. The technology intended to assist often adds to the burden; Josephson is frequently awakened at night by insulin monitor alarms, not because of a medical emergency, but because her mother has shifted in her sleep and compressed the sensor. This chronic sleep deprivation exacerbates Josephson’s autoimmune symptoms, creating a feedback loop of physical decline that remains largely hidden from the outside world. "I try really hard not to look as bad as I feel," Josephson noted, reflecting the silent struggle of millions of Americans in similar positions.
Challenging the Narrative of One-Directional Care
The Brandeis University report, co-authored by research scientist Lauren Bixby and Joe Caldwell, director of the Community Living Policy Center, emphasizes that disabled individuals are not merely recipients of care; they are more likely to be caregivers than those without disabilities. This finding disrupts long-standing societal tropes regarding the roles of disabled people in the community.
Joe Caldwell, who previously worked on developing a national strategy for family caregivers during the first Trump administration, points out that existing frameworks are often insufficient. While the RAISE Family Caregivers Act of 2018 led to the creation of the first National Strategy to Support Family Caregivers in 2022, the specific needs of disabled caregivers remain a secondary consideration. Policy experts argue that inclusivity must be built into the foundation of these strategies, ensuring that services like respite care, transportation, and medical advocacy are accessible to those who may have mobility, sensory, or cognitive impairments of their own.
Advocacy and the Barrier of Communication
Jacquelyn Revere, a 39-year-old caregiver and influencer from Los Angeles, provides another perspective on the intersection of disability and care. Revere spent years caring for her mother and grandmother through their battles with dementia, a journey she documented for a massive audience on social media platforms under the handle @MomOfMyMom. Revere, who has stuttered since childhood, found that the immense stress of caregiving significantly worsened her speech impediment.
The challenges Revere faced were not only physical but structural. In the high-pressure environment of medical appointments, where time is limited and doctors often lack patience, her stutter became a barrier to effective advocacy. "There is this assumption that we’re not as smart," Revere explained, describing the condescension she frequently encountered from healthcare professionals. To ensure her mother and grandmother received proper care, Revere had to innovate, often pre-recording questions or writing them out to bypass the communicative hurdles imposed by her disability.
Since the passing of her grandmother in 2017 and her mother in 2022, Revere has transitioned into a role as a community builder, founding "The Care Den." This initiative seeks to provide a supportive space for caregivers to share their experiences and find the resources they need to navigate the emotional and physical toll of their roles. Her experience underscores a vital point: the disability of a caregiver can complicate their ability to navigate the very systems—healthcare, insurance, and social services—designed to assist the person they are caring for.
Statistical Analysis and Demographic Shifts
The prevalence of disabled caregivers is inextricably linked to the aging of the American population, often referred to as the "Silver Tsunami." Data suggests that caregivers with disabilities are significantly more likely to be over the age of 65. This demographic is often composed of spouses who are managing their own age-related chronic conditions while supporting a partner with cognitive or physical decline.
According to the Centers for Disease Control and Prevention (CDC), one in four U.S. adults has a disability that impacts major life activities. When combined with AARP data showing that more than 48 million Americans provide unpaid care to an adult, the overlap is inevitable. The economic value of this unpaid labor is estimated at over $600 billion annually, yet the caregivers providing this value often face a "double-bind." They are frequently unable to maintain traditional employment due to their caregiving duties and their own health issues, leading to higher rates of poverty and social isolation.
The Psychological Burden of "Mutual Care"
The dynamic of caregiving changes significantly when cognitive disabilities like dementia are involved. In many cases, the care recipient may forget or fail to comprehend that their caregiver is also struggling with a health condition. Josephson noted that while her mother occasionally notices her pain and suggests she "take better care" of herself, the reality of Josephson’s disability is often forgotten in the haze of dementia.
This lack of recognition can lead to a profound sense of isolation. Caregivers with disabilities often feel they must "perform" healthiness to maintain the stability of the household. This performance is mentally taxing and prevents the caregiver from seeking the help they desperately need. Furthermore, the stigma surrounding disability often leads to a fear that if the caregiver admits to their own struggles, the state or medical establishment may deem the home environment "unsafe," potentially leading to the forced institutionalization of their loved one.
Policy Implications and the Path Forward
The findings from the Lurie Institute suggest that the next phase of national caregiving policy must be radically inclusive. This involves several key areas of reform:
- Accessible Respite Care: Current respite services often do not account for the caregiver’s own physical limitations. Programs need to be designed so that the caregiver can actually rest or attend their own medical appointments without the logistical burden becoming overwhelming.
- Training for Healthcare Providers: There is a critical need for medical professionals to be trained in recognizing and supporting disabled caregivers. This includes accommodating communication differences, such as stutters or hearing loss, and understanding the physical limitations of the person who is managing the patient’s home care.
- Financial Support and Social Security Reform: Given the high correlation between disability and caregiving, policy adjustments to Social Security and disability benefits are needed to ensure that providing care does not result in a total loss of financial independence or healthcare coverage for the caregiver.
- Integrated Technology: Assistive technology should be designed with both the recipient and the caregiver in mind. For example, insulin monitors and other medical devices should have interfaces that are accessible to caregivers with visual or motor impairments.
Conclusion
The experiences of Helina Josephson and Jacquelyn Revere are not outliers; they are representative of a substantial portion of the American workforce. As the population continues to age and the prevalence of chronic illness rises, the number of disabled caregivers will only grow. Recognizing the dual role of these individuals is not just a matter of social justice, but a necessity for the sustainability of the American healthcare system.
The "one-directional" model of care is a relic of a simpler demographic era. Today, the reality is a complex web of mutual dependence where the lines between "provider" and "recipient" are increasingly blurred. Addressing the unique needs of disabled caregivers is the next great challenge for social policy, requiring a shift from viewing disability as a disqualifier for caregiving to recognizing it as a common, albeit difficult, reality of the modern caregiving experience. Without significant intervention, the millions of Americans "running on fumes" may find their own health—and the health of those they care for—reaching a breaking point.
