Shining a Light on Young Caregivers
America's only youth caregiving group illumines a silent epidemic
By ASA Staff
It wasn't until a therapist asked Connie Siskowski about her experience as a young caregiver to her beloved grandfather- if she thought it was normal thing for a kid to do- that Siskowski realized it wasn't.
Early one morning, when she went to give her grandfather his medication, she found his lifeless body. Siskowski was only 13 years old.
She recalls that night like it was yesterday. Back then there was no recognition of a child's grief, or of the caregiving role, so it has become Siskowski's calling as president and founder of the American Association of Caregiving Youth (AACY) to help young caregivers. Her group, founded in 1998, evolved into the first and only program that identifies and supports caregiving youth in the United States.
In 2001, when Siskowski went for her doctorate, she chose as her research project a study of the prevalence of family caregiving in Palm Beach, FIa. Working with a local school district, she found more than one-third of high-school-age caregivers had issues with missing school and not doing homework because of caregiving duties, but "no one wanted to believe the information at the time."
Numbers Tell the Story
In 2005, the National Alliance on Caregiving released a report revealing that in the United States there are 1.3 to 1.4 million kids, ranging in ages from 10 to 20, who are caring for sick or disabled relatives, with about one-third taking care of a grandparent. Siskowski now had statistics to go with her story when approaching funding sources. The Bill and Melinda Gates Foundation then conducted focus group research that became the 2006 report, The Silent Epidemic, which showed that 22% of high school dropouts leave school to care for family members.
Siskowski's original study and the Gates Foundation report were critical to getting funding for her new association. Upon finishing her degree, she created a foundation that became the Caregiving Youth Project. Using her original research to identify schools that needed help, in 2006 they began their first program at Boca Raton Middle School in Palm Beach County.
The AACY now has 395 active students and works with eight middle schools. Working in partnership with local school districts, the AACY goes into schools to help students with skills building, and provides much-needed support. It gives caregiving kids an opportunity to stay connected, to learn they're not alone.
Young Caregivers' Unseen Burden
Feeling isolated is one of the burdens of caregiving, especially in families that have trouble seeing how caregiving affects kids. In some families the kids slip into the role out of necessity because parents work, in others they soak up stress as observers. The AACY visits willing families at home, to "help strengthen the family and reduce the load on the child," says Siskowski. "Often kids have tried to protect the family from what's going on with them."
And sometimes, life crumbles for adults, and kids step into primary caregiving roles. When her younger sibling died of meningitis and her parents succumbed to depression and alcoholism, AACY volunteer Laurie Connors says of her youth, "I became the caregiver to hold things together for everyone involved. Yes, it taught me valuable life skills. But the cost I have paid has been enormous. If I had someone to talk to, or if I could have known that I was not alone, life would have been different. …