Imagine that you are a caregiver for a family member who lives with a significant functional limitation. Your home routine is an effort to keep up with shopping, cleaning, dressing, and feeding. At night, you might be woken multiple times for trips to the toilet or for comforting.
You can’t schedule time with friends or leave the home without worrying about your loved one. You might be confused by instructions for administering medication or be physically and emotionally overwhelmed by the work.
{mosads}Now imagine that you, the caregiver, are fourteen years old.
Imagine that rather than being asked how your caregiving is impacting your well-being, you shield the information from your doctors or teachers because they could misunderstand and assume you are being neglected.
You receive no acknowledgement or recognition for this important work that you do; instead, you are lectured for being chronically tardy, late with homework, or for being tired in class. You are never asked about how your caregiving is going, what you need in order to keep yourself and your family well and healthy, or how you think your responsibilities will impact college, work, or your future.
This is the experience of too many young people in our country. In 2005, the only national prevalence study of youth caregiving found that there are 1.3 to 1.4 million youth caregivers, ages 8-18 in the U.S However, with many demographic and healthcare changes, experts anticipate that current prevalence is significantly higher.
Youth caregivers, like adult caregivers, provide care for family members who have chronic illness, disability, or other health condition that requires assistance. They care for siblings, parents, grandparents, great-grandparents, and others. Youth caregivers might support their families in this critical work for as little as an hour each day, or for upward of 40 hours a week.
Yet despite their numbers, and although their work is comparable to that of adult caregivers, young people under the age of 18 are largely absent from policy discussions related to the current and future landscapes of caregiving in our country.
As governments, researchers, and practitioners around the world recognize their importance and voice, the U.S. has made no comparable strides in including youth as caregivers in policy and legislation. In the U.K., for instance, youth caregivers (also called “young carers”) are recognized as having rights that must be respected by local and national governments, caregiving advocacy groups, health care services, and schools. Their programs have measurable impacts upon the educational achievement and wellbeing of caregivers and of their families.
The RAISE Family Caregivers Law provides an opportunity for the U.S. to finally recognize youth caregivers. It directs the Department of Health and Human Services to develop, maintain, and update a national Family Caregiving Strategy. Youth caregiver interests must be represented at the table while developing this strategy.
If they are not, more than one million young people and their families will continue to fall between the cracks of caregiver support. We call upon all advocates of family caregiving to acknowledge youth caregivers and their families as legitimate, but often excluded, stakeholders in actions taken to secure the future of family caregiving in America.
The good news is that there are communities of researcher and practitioners already working to bring this population out of the shadows. The American Association of Caregiving Youth has raised awareness and, for over a decade has provided a multifaceted system of support.
Its Caregiving Youth Project provides direct services to middle and high school students in school, out of school, and at home. Organizations such as the ALS Association are actively collaborating with researchers to understand the role of youth in caregiving for specific disease population, while community networks in North Carolina are focusing on youth caregiving of older adults.
However, until the federal government acknowledges that young people are caregivers in the U.S., this work will only touch a small fraction of families.
The RAISE Family Caregiving Law is good news for all American families. It’s now time for the U.S. to recognize and support youth caregivers. Including their voices in the planning of a future Family Caregiving Strategy is an essential first step.
Dr. Elizabeth Olson, PhD, is Professor of Geography and Global Studies at UNC Chapel Hill. Dr. Connie Siskowski, RN, PhD is the President and Founder of the American Association of Caregiving Youth.