It’s that time of year again – back to school! Follow along with our newest blog series on prepping your young ones for the new school year. Most posts will focus on issues affecting children (K-12) and eventually college-age youth.
By Ann Faraone, EdD; Connie Siskowski, RN, PhD; & Carol D. Goodheart, EdD
As students around the country are excitedly gathering their backpacks and school supplies in anticipation of the new school year, there is another group of students who are more worried than excited…worried about the family member(s) they are caring for…”What if something happens when I am at school?” “What if people at school find out what I do…will they take me away from my family?”
These are not carefree days for caregiving youth.
The National Alliance for Caregiving research (2005) on this population estimated there are over 1.3 million youth, ages 8-18 years, who are sacrificing their education, health, well-being and childhood by providing care for an ill, injured, elderly or disabled family member. It might be a parent, sibling, grandparent or even great-grandparent or other relative in today’s extended families. Frequently these students are assisting more than one person. Their responsibilities include administration of medications, transferring, bathing, toileting, cooking, translating at doctor’s visits, and anything else that an adult caregiver might do.
Yet, they are still children – developing, maturing and trying to figure out life and their futures.
“Why me?” some ask. Most do not identify themselves as “caregivers.”
A child’s job is to learn. With the challenges of academic success compounded by adult-sized caregiving tasks, how do these youth manage and cope?
They often feel isolated and alone. “Who else does this?” they wonder. Feelings of anger, sadness, anxiety and depression are typical and normal responses to tough circumstances.
What can be done?
A Model Program
In the U.S. the first comprehensive program to address the challenges faced by these children began in Palm Beach County, FL in 2006. At the time, many were skeptical. However, in partnership with schools, the Caregiving Youth Project (CYP) of the American Association of Caregiving Youth (AACY) began. Youth caregivers and their families were no longer alone – others understood and would help to support their challenges.
School staff began to look at the back stories of children who had frequent absences or acted out in school. They learned that before school one student made sure her mom got off to dialysis safely. A boy was having trouble staying awake in class. Why? He was up during the night settling down his mentally ill mother. Furthermore, financially insecure families often do not have computers or internet access for homework help. If the sole parent is ill, who helps with school projects, buys the supplies or advocates on their child’s behalf? Lack of participation in school meetings may be misinterpreted as disinterest in the child’s well-being.
Interventions – The CYP has developed specific prioritized support services for student-caregivers:
They are identified through a screening process in grade six.
The CYP professional team provides Skills Building groups from 6th grade through high school.
Lunch and Learn sessions educate about illnesses common to care receivers such as heart disease, diabetes, Alzheimer’s and autism.
CYP staff participates in School Based Team meetings, working with school counselors to identify student issues and collectively strategize solutions.
The home visit results in linkages to resources to strengthen families and reduce stress on youth.
Sponsored activities, including an overnight camp, provide caregiving youth time to bond with each other and experience childhood fun.
Our Changing Society
Not everyone agrees that a child should be in the role of a family caregiver. However, changes in family composition and healthcare delivery impacts children:
There are more single parent as well as multi-generation households.
Complex care, formerly delivered in medical facilities, is now done at home.
Managed care programs have decreased home care support.
More grandparents are raising grandchildren with little consideration for illness or disability affecting that family unit.
Particular Risks for Caregiving Youth
We must face the realities of youth caregivers’ lives, recognize their valiant work, and strive to reduce their worries so they can focus on learning.
Risk of invisibility – Few people are aware that the numbers of youth caregivers far exceeds those in the foster care system. They face the risks for school drop-out, depression, anxiety, physical injury, trauma, abuse, grief, loss of normal developmental and social activities.
Risk of not meeting school expectations – signs of caregiving may include tardiness, absences, incomplete assignments, non-participation in school events, distraction or inability to focus, lethargy, unkempt appearance, and being isolated, anxious or bullied.
Risk of school dropout – the Civic Enterprises Silent Epidemic (2006) reported that among young adults who had dropped out of school, 22% said it was to care for a family member. Others reported dropping out for financial reasons. Did these young people have to go to work because mom or dad was no longer able to work?
Risk of exposure – Families may fear that if others knew their child was providing significant care, the child would be removed from the home. They do not know about possible resources to support their family.
Risk of role “blindness” – Parents may not be aware of the anxiety that family illness creates. The child, realizing how overwhelmed the family already is, may not share his/her own feelings or concerns. Also, when an adult in the home is employed, the adult may not fully appreciate all the caregiving the child is doing when the parent is not home. “But, I’m the caregiver” a parent said until asked if her son gave medications or assisted with feedings; then the mom realized that he too was providing care.
All caregivers within a family deserve recognition and support!
Educators, counselors, school nurses, psychologists and others can help by identifying and then supporting a caregiving student.
American Psychological Association, Connecting with Caregivers: http://www.apa.org/pi/about/publications/caregivers/consumers/index.aspx
American Association of Caregiving Youth: www.aacy.org or call 800-508-9618 or 561-391-7401 for direct assistance. The AACY website has suggestions and links that can help families, professionals and school-based staff to assist these vulnerable students.
View short videos of real caregiving youth as broadcast on national TV via the home page of www.aacy.org
Help caregiving youth to gain recognition and support by sharing this blog post.
Ann Faraone, EdD, is the Director of Education Services at the American Association of Caregiving Youth (AACY). With over four decades of experience in the field of education, Dr. Farone began her career as a teacher in NYC. She has also been the Program Director for the NYS Department of Education, Assistant Dean of the Graduate School of Education & Human Services at St. John’s University, and as a Principal in NY & FL.
Connie Siskowski, RN, PhD, is founder of the American Association of Caregiving Youth (AACY). She was named as a Purpose Prize winner in 2009 and a top 10 CNN Hero in 2012. She went to nursing school at Johns Hopkins University and holds a Master’s degree from New York University in Public Administration and a PhD in Educational Leadership from Lynn University. She founded AACY in 2006.
Carol Goodheart, EdD, earned her doctorate in Counseling Psychology at Rutgers University and is a licensed psychologist practicing in Princeton, New Jersey. She is Chairperson for the National Advisory Council for the American Association of Caregiving Youth. She was the 2010 President of the American Psychological Association. She is also a Fellow of the American Psychological Association, a Distinguished Practitioner in the National Academy of Psychology, a Registrant in the National Register of Health Service Providers in Psychology, and the recipient of national and state Psychologist of the Year Awards from Psychologists in Independent Practice and from the New Jersey Psychological Association, as well as the recipient of the Gold Medal Award for Life Achievement in the Practice of Psychology.
Image source: iStockPhoto.com