Joyce is a high school student whose father has Multiple Sclerosis (MS). At age 15, she helps her single dad exercise, bathe, shave, take medications, and she cooks diet-appropriate meals. She also manages most household duties, including cleaning, laundry, lawn mowing, and more. After her caregiving responsibilities are finished for the day, it's time for homework. Joyce has difficulty focusing on grades or friendships because even at school, she knows the responsibilities she must face when she returns home. She is constantly thinking about her father and what’s going to happen to her if something happens to him.
For many years, 14-year-old David has been caring for his younger sister Rania, who is now 11, and was born with a rare congenital heart defect. His family came to the United States to receive needed medical care for her. So far she has had eight heart surgeries and two on her eyes. “There were days when Rania was not feeling well. I got scared but I knew what to do: keep her calm, put on her monitors to check her heart rate, blood pressure and oxygen levels,” said David.
He is thankful for the ongoing support and recognition he receives from the Caregiving Youth Project of the American Association of Caregiving Youth, including the ability to earn community service hours required by his high school. He also said, “We don’t know what the future has for us, but we take every day as it comes. We are happy together.” He wants to pursue a medical career after entering the military.
The Caregiving Youth Project started in one middle school and now serves students in 35 public middle and high schools.
Established in 1998 as Boca Raton Interfaith in Action, what is now the American Association of Caregiving Youth (AACY), is the only organization in the United States that solely concentrates on helping young caregivers and their families. Caregiving youth are children younger than age 18 who are providing care for a loved one with a chronic illness, a disability or frailty associated with aging.
Caregiving Youth Project
After research done in Florida and nationally, in 2006 the nonprofit launched a school-based program, the Caregiving Youth Project (CYP), through a cooperative agreement with the School District of Palm Beach County. CYP started in one middle school and now serves students in 35 public middle and high schools. The program also extends and provides support and services to student caregivers in 22 other schools that do not yet house the in-school component.
CYP provides comprehensive services in school, the community and at home, all at no cost to clients. Each caregiver is assigned a master’s level family specialist who assesses the young person’s and their family’s needs through an intake process and, if eligible, invites the student to ask for parental permission to participate. When enrolled, the specialist identifies areas of concern and initiates follow-up care management services to meet the family’s needs within AACY’s resources abilities.
These services include but are not limited to: skills-building support groups for the young people in school, along with lunch and learn sessions, and individual counseling. Other supports include the awarding of community service hours for high school students, tutoring, respite, mentoring, counseling, sponsored fun and educational activities/events, special projects and referrals to appropriate community partners.
CYP’s goal is to ensure that all students receive support, learn they are not alone and successfully graduate from high school. Statistics show that 22% of adults who have not graduated from high school dropped out due to caregiving responsibilities. In contrast, CYP participants have a high school graduation rate of 98%, demonstrating that programmatic and other ongoing support of the young caregivers and their families is critical to the success of this unique population.
CYP participants have a graduation rate of 98%.
As of 2020, there were more than 5.4 million caregiving youth in the United States. In Florida, more than 290,000 student caregivers were identified in public schools through the statewide Youth Risk Behavior Survey (YRBS), resulting in a breakdown of 23.6% in middle school and 16.4% in high school. The varying diagnoses and mammoth responsibilities run the gamut as the young people are performing care for family members with cancer, unmanaged diabetes, hypertension, frailty due to aging, developmental and other disabilities, and more. They also help with medication and medical equipment management, wound care, bathing/hygiene care, incontinence care, lifting and moving, feeding, meal preparation, transporting to and attending medical appointments, as well as translating between relatives and medical professionals.
In the absence of recognition and support, these children face many challenges such as: tardiness to school due to exhaustion from the previous night of providing care, pre-school caregiving, difficulty focusing and completing school assignments, isolation from peers and limited participation in extra-curricular activities due to caregiving time requirements and often limited resources. Multiple studies show that young caregivers have a higher prevalence of anxiety and depression than do their non-caregiving peers. Additionally, since the COVID-19 pandemic, the CYP team has observed an increased trend in high school student caregivers working an outside job to provide financial support for their family.
Caregiving Youth Institute
The Caregiving Youth Institute (CYI) was created in 2014 with a special seed donation as a response to the rising numbers of caregiving youth who were going unrecognized by school, healthcare and community systems. CYI follows four C.A.R.E. tenants: Connect, Advocate, Research and Educate. Beginning in 2015, CYI has hosted four in-person and one virtual conference. Professionals and community members participate from local, state and out-of-state organizations, as well as Canada and the UK.
Since the launch of AACY’s programs, there has been some recognition of the organization’s efforts to find solutions for the plights faced by these young people. CYP directly helps more than 500 caregiving youth throughout the calendar year and has helped more than 2,100 since its inception. The organization receives some local funding from Palm Beach County for services, but mostly operates on grants and individual donations.
In 2022, AACY proudly received the County Proclamation naming Nov. 13–Nov. 19 “Palm Beach County Caregiving Youth Week.” The federal government also issued a Congressional resolution citing its “First National Caregiving Youth Week” during that same time period. Although AACY has made much progress, there is still a long road ahead!
AACY's National Advisory Council members from multiple states, including AACY President and Founder Dr. Connie Siskowski, are also relentlessly seeking legislative changes in Florida and federally. This would significantly help to recognize and increase the support and thus success for this overlooked population of children and adolescents throughout their education, including tuition assistance. Furthermore, these young caregivers are prime candidates for workforce development in the field of healthcare due to their experience.
The mission of AACY is to champion and support these young people, but it cannot do it alone. Resources and financial support are needed for the rising numbers of caregiving youth and families in need and critical to continuing and expanding the program’s support. Since 2014, an affiliate model has been created. Yet in the absence of public financial support, it was unable to sustain serving this special population. There are also limited resources once young caregivers reach age 18, unless they are caring for an older individual. These resources vary by region. The ultimate goal is for caregiving youth to be recognized and supported throughout the United States, so that no child has to drop out of school due to family caregiving responsibilities.
Amoy Gordon, MSW, RCSWI, is director of the Caregiving Youth Project at the American Association of Caregiving Youth, in Palm Beach, Fla.