Story of Impact: American Association of Caregiving Youth (AACY)

Posted by Reeve Staff in Daily Dose on February 21, 2018 # Quality of Life Grant Spotlight, Caregiving

It’s easy to underestimate the number of children who care for an ailing family member. The only national study was done in 2005 and estimated that more than 1.3 million children ages 8-18 years old in the United States were caregiving youth. Connie Siskowski thinks the number is much higher.

“It is a multidimensional issue. We often focus on children of caregivers and not children as caregivers. There is very little recognized support for these kids,” said Siskowski, RN, PhD, who founded a nonprofit in 1998 that became the American Association of Caregiving Youth (AACY). “Many parents have an unfounded fear that if they reach out for help, their family will be split apart.”

Siskowski understands the challenges first-hand. As a young teen, she took a primary role in caring for her 84-year-old grandfather, often helping him with medical, personal hygiene and mobility needs. As an adult, she created AACY as a national resource for children who sometimes sacrifice their education, health, well-being and childhood to provide care for family members who are ill, injured, elderly or disabled.

In 2006, Siskowski took her commitment one step further and founded the first Caregiving Youth Project (CYP) in the United States. Funded and initiated in partnership with Florida’s School District of Palm Beach County, the CYP aims to increase awareness and support for the more than 10,000 children identified as caregiving youth throughout Palm Beach County which is roughly the size of Delaware.

“We provide needs-driven prioritized services to child caregivers in school, out of school and at home,” said Siskowski. “We are unique in that the child is our client. It could be an ailing grandparent, a sibling with a congenital condition or a parent who had an accident. We cover a wide range of conditions for families with limited resources.”

Last year, CYP aided 607 children in 23 schools. Youth caregivers are identified in sixth grade through a simple eligibility form. Support ranges from wheelchair ramps, bathroom safety bars and other vital home modifications to facilitating other assistance such as respite, tutoring and fun activities as well as connections to information and other resources.

“Every situation is different and we evaluate each family individually,” said Siskowski who also established the Caregiving Youth Institute to collaborate and share best practices with other states. “Our primary goals are to provide support for the children and to make sure they know they are not alone.”

In 2016, CYP reached out to the Reeve Foundation for a Quality of Life Grant to help support a family care coordinator position, contracted respite care services, and home visit assessments. Forty-two percent of the children CYP has identified are caring for someone with mobility limitations.

“There are no grants out there for caregiving youth so it was wonderful for the Reeve Foundation to recognize this important need,” said Siskowski. “The Quality of Life grants are so appropriately named. The Reeve Foundation is such a well-known name; their support gives us credibility and it makes us very proud.”

Although the home safety modifications and improvements that the Reeve Foundation grant supports are important, Siskowski also stresses how vital in-home respite care is to provide relief for the youth caregiver and other family caregivers who share responsibilities for the physical needs of their family member.

“It is so important to give caregivers a break and we try to provide a respite at least once a week,” said Siskowski. “It’s one of those simple things we all take for granted but can mean so much for the family to feel cared about and not so isolated.”

Siskowski continues, “No child should have to drop out of school because of family caregiving responsibilities. With increased support, more than 95 percent of CYP participants progress to the next grade level, graduate from high school and are well on their way to become healthy productive adults.”

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.