Wikipedia

Draft:American Association of Caregiving Youth

American Association of Caregiving Youth
AbbreviationAACY
Formation1998 (as Boca Raton Interfaith in Action)
2005 (as Volunteers for the Homebound and Family Caregivers)
2010 (as American Association of Caregiving Youth)
Type501(c)(3) nonprofit organization
HeadquartersBoca Raton, Florida, U.S.
Key people
Connie Siskowski, RN, PhD (Founder and President)
Websiteaacy.org

The American Association of Caregiving Youth (AACY) is a nonprofit organization headquartered in Boca Raton, Florida. It is the only organization in the United States dedicated to identifying and supporting Caregiving Youth, defined as young people under the age of 18 who provide significant care or assistance to a family member with a chronic illness, disability, mental health condition, or frailty due to aging, regardless of the specific diagnosis or condition of the person receiving care.[1] A 2025 report by the U.S. Government Accountability Office cited research estimating that 3 to 5 million minors in the United States may be caregivers.[2] AACY operates a direct services program in the School District of Palm Beach County, Florida, under a cooperative agreement with the district. The program identifies and supports Caregiving Youth at school and at home. AACY also coordinates national advocacy, research, and education through its Caregiving Youth Institute.

History

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AACY was founded in 1998, when Connie Siskowski, RN, PhD, established a nonprofit in Boca Raton, Florida called Boca Raton Interfaith in Action, with initial funding from the Robert Wood Johnson Foundation to provide volunteer support services to homebound individuals and caregiving families. The organization's name changed to Volunteers for the Homebound and Family Caregivers in 2005.[3]

The focus on youth caregivers emerged from Siskowski's doctoral research, which identified a population of child caregivers in Palm Beach County schools whose academic challenges had not previously been counted or documented. A 2005 national prevalence study by the National Alliance for Caregiving and the United Hospital Fund estimated that at least 1.4 million children ages 8 to 18 were serving as caregivers in the United States.[4] A 2006 report by Civic Enterprises for the Bill and Melinda Gates Foundation found that among high school dropouts in the United States, 22 percent had left school to care for a family member.[5]

Effective January 1, 2010, the organization officially became the American Association of Caregiving Youth, a Florida-based 501(c)(3) nonprofit corporation, narrowing its focus exclusively to children in caregiving roles.

The Caregiving Youth Project began in the fall of 2006 at Boca Raton Community Middle School, described as the first school-based program of its kind in the United States.[6] By 2024, it had expanded to serve students across more than 40 middle and high schools in Palm Beach County.[7]

In 2014, AACY launched the Caregiving Youth Institute, organized around the C.A.R.E. framework: Connection, Advocacy, Research, and Education.

A 2021 article published in Generations by the American Society on Aging examined AACY's role in shaping the national research and policy agenda for Caregiving Youth in the United States through its school-based program, national institute, and research collaborative.[8]

Programs

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Caregiving Youth Project

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The Caregiving Youth Project is a school-based direct services program operating in Palm Beach County, Florida, under a cooperative agreement with the School District of Palm Beach County. It serves middle and high school students who are providing unpaid care for family members, offering identification, social work services, academic support, respite services, and connection to community resources. Services are provided at no cost to students and their families and extend to support at home as well as at school.[9]

As of 2025, the program serves approximately 700 students per year across 44 Palm Beach County schools and reports an 11-year average high school graduation rate of 98 percent, with more than 80 percent of graduates pursuing post-secondary education, certifications, or military service.[10] The program has been covered by independent news organizations as a school-based model for identifying and supporting Caregiving Youth.[11]

Caregiving Youth Institute

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The Caregiving Youth Institute, launched in 2014, serves as AACY's national program organized around four areas of work: Connection, Advocacy, Research, and Education. The institute coordinates peer connection for Caregiving Youth and their families, conducts federal and state policy advocacy, supports an affiliate network of organizations serving Caregiving Youth across the country, and facilitates education and outreach for healthcare providers, educators, and policymakers. In 2015, the institute co-founded the Caregiving Youth Research Collaborative in partnership with researchers at the University of North Carolina at Chapel Hill. The collaborative brings together academics and practitioners from universities and organizations across the United States and Canada.[12]

In 2022, the Rhode Island Council on Elementary and Secondary Education approved Readiness-Based Graduation Requirements, effective for the graduating Class of 2028, which explicitly require high schools to identify and provide supports and flexibilities for Caregiving Youth. Rhode Island is the first U.S. state to mandate statewide identification and support for Caregiving Youth in public schools.[13][14]

Research

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The following peer-reviewed publications and government reports have cited or named AACY as a contributing organization.

In 2021, the Social Policy Report published "The United States Should Recognize and Support Caregiving Youth" (Armstrong-Carter, Johnson, Belkowitz, Siskowski, and Olson), which drew on data from AACY's school-based programs and the Florida Youth Risk Behavior Survey.[15]

In January 2023, the American Academy of Pediatrics published "Recognize and Support Caregiving Youth in Your Care," which named AACY and outlined clinical guidance for pediatric providers in identifying youth caregivers.[16]

In 2024, the U.S. Government Accountability Office conducted a study on Caregiving Youth, for which AACY assisted with participant outreach and stakeholder engagement. The resulting report, Caregiving: HHS Should Clarify When Youth May Qualify for Support Services (GAO-25-106947), was published in May 2025 and addressed to congressional committees. It drew on school-based survey data from Florida, Colorado, and Rhode Island, and recommended that the Department of Health and Human Services clarify eligibility for support services for minors in caregiving roles.[2]

In February 2024, AACY contributed to the development of the Caregiving Youth Resource Guide, published on SupportCaregiving.org by the National Academy for State Health Policy with support from the John A. Hartford Foundation.[17]

Recognition and media coverage

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In 2009, AACY founder Connie Siskowski received a lifetime Ashoka Fellowship[18] and was named a Purpose Prize winner, a national recognition for individuals over 60 who have created solutions to social challenges.[19]

In 2012, Siskowski was named one of the Top 10 CNN Heroes.[20]

In December 2017, Vice News published a video report featuring a Palm Beach County teenager providing care for three family members simultaneously, highlighting the work of AACY's Caregiving Youth Project.[21]

In September 2022, Teen Vogue published an examination of youth caregivers and the challenges of providing home care for disabled family members, including coverage of AACY's programs.[22]

In January 2023, Esquire published "The Silent Epidemic Affecting Generation Z" by Anna Altman, an investigative piece on young caregivers in the United States that featured AACY and interviews with youth connected to the organization.[23]

In April 2024, The Wall Street Journal published "Millions of American Kids Are Caregivers Now: 'The Hardest Part Is That I'm Only 17'" by Clare Ansberry, examining the scope of youth caregiving in the United States and AACY's school-based response.[24]

In April 2024, the Johns Hopkins Bloomberg School of Public Health podcast Public Health On Call featured AACY founder Connie Siskowski in an episode on the needs of young family caregivers in the United States.[25]

In May 2024, AACY founder Connie Siskowski appeared on Fox News to discuss the economic factors driving an increase in youth caregiving in the United States.[26]

In June 2024, USA Today published a feature on the recognition and support of youth caregivers, including coverage of AACY's programs.[27]

In July 2024, a Caregiving Youth Project student and a youth caregiver from Kesem appeared on the TODAY Show with Maria Shriver on NBC in a segment on youth caregiving.[28]

In 2025, AACY served as a national outreach and engagement partner for Caregiving, a PBS documentary executive produced by Bradley Cooper, which premiered nationally on June 24, 2025. Statistics on Caregiving Youth cited in the documentary were sourced in part through AACY and the Caregiving Youth Research Collaborative.[29]

In April 2026, AACY was featured in TIME in an article examining the potential impact of proposed Medicaid cuts on families relying on home-based care.[30] That same month, Forbes published a feature on Caregiving Youth in the United States, focusing on AACY's programs and founder Connie Siskowski.[31]

In early 2026, AACY and the Caregiving Youth Project were recognized in a Churchill Fellowship research report by Madeleine Buchner of Little Dreamers Australia, examining international programs for young carers.[32]

Policy and legislation

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In November 2022, U.S. Representatives Lois Frankel (D-FL-22), Barbara Lee (D-CA-12), and María Elvira Salazar (R-FL-27) introduced the first congressional resolution to formally recognize Caregiving Youth, designating a National Caregiving Youth Week.[33][34]

In November 2025, U.S. Representatives Lois Frankel (D-FL-22) and María Elvira Salazar (R-FL-27) introduced a bipartisan measure recognizing November 10–16, 2025, as National Caregiving Youth Week.[35]

In February 2026, the federal Lifespan Respite Care Reauthorization Act was signed into law, explicitly recognizing caregivers under the age of 18 for the first time in federal statute. The legislation was authored by Senator Susan Collins (R-ME) and Senator Tammy Baldwin (D-WI) and extended the Lifespan Respite Care Program through Fiscal Year 2030.[36][37]

See also

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References

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  1. ↑ "Youth Caregivers Are a Rising Trend. Experts Say They Need More Help". Detroit PBS. Retrieved 24 April 2026.
  2. 1 2 Caregiving: HHS Should Clarify When Youth May Qualify for Support Services (Report). U.S. Government Accountability Office. May 14, 2025. GAO-25-106947.
  3. ↑ "History". American Association of Caregiving Youth. Retrieved 24 April 2026.
  4. ↑ Young Caregivers in the U.S.: Findings from a National Survey (Report). National Alliance for Caregiving and United Hospital Fund. September 2005.
  5. ↑ Bridgeland, J.; DiIulio, J.; Morison, K. (March 2006). The Silent Epidemic: Perspectives of High School Dropouts (Report). Civic Enterprises for the Bill and Melinda Gates Foundation.
  6. ↑ "Help for a 'hidden population' of caregiving kids". CNN. May 17, 2012.
  7. ↑ Ansberry, Clare (April 27, 2024). "Millions of American Kids Are Caregivers Now: 'The Hardest Part Is That I'm Only 17'". The Wall Street Journal.
  8. ↑ Lewis, F. (October 20, 2021). "Youth Caregivers: Before, During, and After the Pandemic". Generations. American Society on Aging.
  9. ↑ Ansberry, Clare (April 27, 2024). "Millions of American Kids Are Caregivers Now: 'The Hardest Part Is That I'm Only 17'". The Wall Street Journal.
  10. ↑ "Hundreds of children in Palm Beach County are youth caregivers". WPTV. April 17, 2024.
  11. ↑ Altman, Anna (January 12, 2023). "The Silent Epidemic Affecting Generation Z". Esquire.
  12. ↑ Olson, E.; Edmonds, L. (October 2023). "Caregiving Youth and the Patchwork History of Recognition in the United States". International Journal of Environmental Research and Public Health. PMID 37887658.
  13. ↑ "The Rhode Island Diploma System and Graduation Requirements". Rhode Island Department of Education. Retrieved 24 April 2026.
  14. ↑ "Rhode Island Caregiving Youth Guidebook". Rhode Island Department of Education. February 2026. Retrieved 24 April 2026.
  15. ↑ Armstrong-Carter, E.; Johnson, C.; Belkowitz, J.; Siskowski, C.; Olson, E. (2021). "The United States should recognize and support caregiving youth". Social Policy Report. 34 (2). Wiley. doi:10.1002/sop2.14.
  16. ↑ Rivera, M.; Bliss, B.; Siskowski, C.; Belkowitz, J. (January 11, 2023). "Recognize and Support Caregiving Youth in Your Care". Pediatrics. American Academy of Pediatrics.
  17. ↑ "Caregiving Youth Resource Guide". National Academy for State Health Policy. Retrieved 24 April 2026.
  18. ↑ "Ashoka Fellow Connie Siskowski". Ashoka. Retrieved 24 April 2026.
  19. ↑ "Purpose Prize Winner Championing Children Named CNN Hero". Encore.org. Retrieved 24 April 2026.
  20. ↑ "Help for a 'hidden population' of caregiving kids". CNN. May 17, 2012.
  21. ↑ "What It's Like To Take Care Of Multiple Family Members At Age 15". Vice News. December 18, 2017.
  22. ↑ Germain, Jacqui (September 23, 2022). "Youth Caregivers: The Challenges of Providing Home Care for Disabled Relatives". Teen Vogue.
  23. ↑ Altman, Anna (January 12, 2023). "The Silent Epidemic Affecting Generation Z". Esquire.
  24. ↑ Ansberry, Clare (April 27, 2024). "Millions of American Kids Are Caregivers Now: 'The Hardest Part Is That I'm Only 17'". The Wall Street Journal.
  25. ↑ "740 - The Forgotten Youths Who Are Caregivers For Their Families". Johns Hopkins Bloomberg School of Public Health. April 1, 2024. Retrieved 24 April 2026.
  26. ↑ "Families struggling to afford home care leading to more youth caregivers". Fox News. May 9, 2024.
  27. ↑ "Youth caregiver rise: Recognition and support". USA Today. June 2, 2024.
  28. ↑ "Child caregivers shine light on heavy task of tending to sick parents". Today.com. July 10, 2024. Retrieved 24 April 2026.
  29. ↑ "Executive Producer Bradley Cooper's Film Caregiving to Premiere on PBS for Nationwide Broadcast June 24". WETA. March 20, 2025. Retrieved 24 April 2026.
  30. ↑ McCarty, Lisa (April 12, 2026). "Medicaid cuts could force more kids to become caregivers". Time.
  31. ↑ Kilgore, Wes (April 20, 2026). "Why No Child Should Have To Sacrifice School To Care For Their Family". Forbes.
  32. ↑ "To understand best practice research, policy and practice for young carers". The Churchill Trust. Retrieved 24 April 2026.
  33. ↑ "Reps. Frankel, Barbara Lee, and Salazar Lead Resolution to Recognize and Support Caregiving Youth". U.S. Representative Lois Frankel. November 21, 2022. Retrieved 24 April 2026.
  34. ↑ "Florida congresswoman offers resolution to designate National Caregiving Youth Week". Florida Daily. Retrieved 24 April 2026.
  35. ↑ "Reps. Frankel and Salazar Introduce Bipartisan Resolution Recognizing National Caregiving Youth Week". U.S. Representative Lois Frankel. November 13, 2025. Retrieved 24 April 2026.
  36. ↑ "Signed Into Law: Lifespan Respite Care Reauthorization Act". U.S. Senator Susan Collins. February 2026. Retrieved 24 April 2026.
  37. ↑ "S.830 - Lifespan Respite Care Reauthorization Act of 2025". Congress.gov. Retrieved 24 April 2026.
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