When my mother experienced a botched spinal surgery 25 years ago, she was discharged from the hospital to her 11-year-old child waiting at home. Me.<\/p>\n
After weeks in a rehabilitation facility, she was sent home in a neck brace and with a prescription for pain medication. She could no longer drive, and her long recovery prohibited her return to work as a registered nurse. When she was discharged, no one asked who would be living with her at home. She could not raise her arms above her head, yet no one asked who would feed, bathe or dress her. There was no one else in our family home but me. Ferrell, my 19-year-old brother, was away at college, and my parents divorced in my early childhood; my father lived thousands of miles away in Germany.<\/p>\n
The blessed hindsight of 25 years allows me to reflect upon the absurdity of it all. Why did no one ask if there was a responsible adult living in the home, someone to look after the disabled woman and her minor-age child? Did they truly expect that a woman who could barely stand unassisted would resume her normal household duties of cooking, cleaning and looking after me?<\/p>\n
There were no social workers assigned to her or home health aides visiting our home. The intimate tasks of bathing and dressing my mother fell to me. The administration of her numerous medications? I became well-versed in the complex drug names of her pill bottles, knowing exactly which medication to reach for at the right time. Over the coming years, my mother had a number of attempted corrective surgeries \u2013 to no avail \u2013 and I held the responsibility of her wound care after each. I was a child who still played with Barbie dolls and acted out the game of \u201chouse\u201d with her cousins. Yet, there I was, the caretaker of a real house at age 11.<\/p>\n
I wish that I could say that my experience is a relic of the distant past. According to the AARP and National Alliance for Caregiving, 5.4 million US children under the age of 18 have caregiving responsibilities<\/a> Youth caregivers typically provide care for their ill or disabled parent or grandparent, but they can provide care for anyone in their world: siblings, extended family members and friends.<\/p>\n Despite our growing awareness of the needs of children and adolescents with caregiving responsibilities, we have done little on a national scale<\/a> to support them. Perhaps our collective inaction is not surprising. The 63 million adults with caregiving roles in the US<\/a> have a precarious existence. Adult caregivers face the One Big Beautiful Bill Act\u2019s cuts to Medicaid and Medicare<\/a>, other political uncertainty, and lack of widespread respite care. Child caregivers, who are far less visible and less able to advocate for themselves \u2013 will likely suffer exacerbated effects.<\/p>\n Neo, a 16-year-old Bayside, New York resident, knows first-hand about these challenges. He started providing care for his father at age 12 after his father suffered a debilitating stroke. Before his father had a feeding tube, Neo would spoonfeed his father\u2019s meals and dress and bathe him, which Neo says was a \u201cnightmare to do\u201d. In fact, Neo says that his caregiving tasks were so extensive that his life \u201cdoesn\u2019t feel like a childhood\u201d but rather \u201cI\u2019m carrying a lot of responsibilities. It feels like I\u2019m basically an adult.\u201d<\/p>\n It doesn\u2019t have to be that way. In England, schools and charities have worked collaboratively to create the Young Carer Challenge<\/a>, a program that trains elementary and secondary school staff (called a \u201cYoung Carer Champion\u201d) to identify and support youth caregivers. For teens entering college, their standard application form asks them to indicate if they are a caregiver<\/a>, facilitating formal support services such as mental health counseling upon matriculation.<\/p>\n The British social scientist Saul Becker, a global expert on youth caregiving, believes that youth caregiving exists on a continuum<\/a>. Most children have some caregiving role at some time, but for a small percentage of them, it becomes a regular part of life. Youth caregiving extends beyond mere household chores or babysitting, and it is rarely a conscious decision parents or guardians make for their children. Rather, illness, disability, aging, and addiction in families \u2013 and increasing caregiving needs \u2013 transition children from caring about someone to caring for someone.<\/p>\n Greater amounts of caregiving are often associated with advanced levels of negative health outcomes<\/a>, such as depression, anxiety, self-harm and post-traumatic stress disorder. In school, youth caregivers have been shown to experience bullying, diminished academic performance and chronic absenteeism at higher rates<\/a> compared to their peers in non-caregiving roles.<\/p>\n In my family, my brother faced some of these repercussions. He came home from college during the weekend of our mother\u2019s surgery. He anticipated going back to class on Monday morning. Because the surgery was performed incorrectly, he realized he would have to drop out of college to care for us. He became what we researchers now call a young adult caregiver, taking on a full-time job to pay for our household bills.<\/p>\n Now 45 and finally a college graduate, he reflects that his young caregiving experience strengthened his patience, resilience, and problem-solving abilities. However, he added: \u201cThe trauma experienced during that period also required deep emotional, psychological, and social sacrifices that I continue to navigate to this day.\u201d<\/p>\n This is not the first time our country has depended on young people to fill in the missing gaps in our care infrastructure. During slavery, Black enslaved women, including adolescent girls, served as wet nurses for the infants of their white slave mistresses. A perversion of care, Black nursing women and girls depleted their own milk supply in service to their masters, leaving their own children without nourishment<\/a>.<\/p>\n To combat the terrifying rates of infant mortality of the early 1900s, the Little Mothers\u2019 Leagues<\/a> in New York City trained European immigrant young girls to provide care for their infant siblings while their parents worked. The Little Mothers\u2019 Leagues were seen as a great success in resolving the problem of much-needed childcare in an industrial society that required the labor of poor, newly arrived immigrants. Yet no one questioned why impoverished children were seen as an acceptable solution to an insufficient care infrastructure.<\/p>\n Today, domestic care work continues to be largely performed by Black and brown women<\/a> for low wages and with precarious worker protections. During the COVID-19 pandemic, Black and brown girls<\/a> were found to be performing greater amounts of caregiving in the home, compared to other racial groups.<\/p>\n Youth caregivers \u2013 Black and brown girls especially<\/a> \u2013 are living at the bottom of the societal food chain. They provide unpaid healthcare services in the home as \u201clittle nurses,\u201d if you will, counterbalancing the government\u2019s failure to safeguard the nation\u2019s sick and disabled.<\/p>\n That trend has only worsened under Donald Trump\u2019s second term as president. Eleven million family caregivers rely on Medicaid<\/a> to pay them for supporting their ill or disabled family members, and the One Big Beautiful Bill Act will cut Medicaid funding with some states proposing cuts early as the next fiscal year. Because of its coverage under Medicaid, the Home and Community-Based Health Services (HCBS) program is at risk for deep funding cuts, which family caregivers use to receive stipends for meal deliveries, home health care, and accessible home adaptations for older and disabled people.<\/p>\n