Ellen was 14, in the eighth grade, in a Florida middle school, when she took a short questionnaire at school that asked about caring for ill, injured or disabled parents, siblings or grandparents. She was surprised when shortly after that she was taken out of class to meet with someone from an organization that she would come to cherish, who asked her, "Was it true?" referring to her responses about her responsibilities caring for her parents.
Not only was it right but it began Ellen on a path that now, four years later and a senior in high school, has her able to manage as a caregiver of her parents yet still build her own life so that she is preparing for college next year. The organization is called The American Association of Caregiving Youth (www.aacy.org), founded by Connie Siskowski, R.N., Ph.D., whose work won her a coveted Ashoka Fellowship as a social entrepreneur (see my post "What in the World Is a Social Entrepreneur?")
What struck Ellen, after speaking with the family specialist (a licensed clinician) who reviewed her questionnaire with her, was that being different was not something to be ashamed of. She could be proud of who she was and the help she was providing for her family. She was certainly not alone as a youth caring for other family members. She joined a group, run by "Dr. Connie," of eight other teenagers who are still together today, where information was liberally laced with support and where these youth grew more confident that their burdens need not derail their lives. The work of Caregiving Youth has spread from one school to more than 25 middle and high schools in Palm Beach County, Florida.
What Dr. Connie recognized were the changing demographics of families, with more women working, more single parent and multi-generational households, more grandparents as parents, and a broken health care and long-term care system that relies tremendously on families to take care of their loved ones, even if the caretakers are children. Estimates are that over 1.3 million youth ages eight to 18 are caregivers, with responsibilities for ill, injured or disabled parents, siblings or grandparents. Rates of isolation, anxiety and depression are high among these youth, and one in four has serious educational problems. These were the problems that Dr. Connie and Caregiving Youth sought to remedy.
The Caregiving Youth Project (CYP) delivers services in school, out of school and at home. Tweens and teenagers, from middle school and older, are taught skills in how to manage their personal and caregiving lives and their feelings. Sometimes tutoring, even in-home tutoring, is arranged. The youth gather in groups and help one another, enjoying planned activities, diminishing shame and delivering support, and sustaining these connections through all the electronic links we now enjoy. When needed, the program does home visits and helps arrange for special services, like respite, access to medical care and case management, for the parents, siblings or grandparents.
Getting an adolescent to do anything can be a challenge (adults are sort of like that, too), especially those already besieged by demands. Yet retention in this program is very high, with virtually every student who joined remaining in and engaged throughout high school and as long as they continued in their caregiving role. Program participants report better grades, improved family relationships, reduced isolation, more time for themselves, more confidence and hope for their futures.
Another youth, Jesse, joined CYP when he was 12, with falling test scores and grades, suffering from clinical depression and showing attendance problems at school. His family lived in a mobile home community and his father had a serious and chronic lung condition with medical bills that the family could not manage. His mom was disabled after a fall and had mobility problems and depression. Jesse attended groups in school that taught him how to better manage himself and his parents' needs; home visits resulted in the delivery of case management for his parents, household improvements and the provision of other resources that on their own this family had not obtained. With other student-caregivers Jesse was able to get out of his cloistered caregiving life at home and begin to rediscover friends and a world that had been shutting down for him. These interventions worked. His school attendance, grades and test scores have all improved -- as have conditions at home.
Basic principles of public health are at work here: Identify people at risk or suffering from a condition that can be improved by proven interventions, and establish ways to implement the known solutions for large number of people. But can CYP be "scaled up," a favorite question among public health professionals and policy makers? Can it go from a group of Florida counties to widespread application throughout this country? That is Dr. Connie's current challenge, and that of all people concerned about the future of more than one million deserving youth, their families and their communities.
I asked Ellen after we were done talking about her family and her plans what advice she gives other young people. She initially demurred, saying no words can quite express what it is like having an ill parent and providing care for him or her. But with some encouragement she added that in caring for others, "patience is the key ... don't give up on them. You would not be here without them. They did not give up on you."
Wise counsel from a youth whose experience has made her mature beyond her years, a youth whose life has been rescued by an organization that knows what needs to be done and how to do it. The future of many like her lies in how well this program can spread beyond its Florida beginnings.
The opinions expressed herein are solely my own as a psychiatrist and public health advocate.
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