In the Shadows . . .

Caregiver, Kadniel, with Grandmother

Youth Caregiver, Kadniel, with his Grandmother

By guest blogger, Connie Siskowski (RN, PhD, President, American Association of Caregiving Youth), on behalf of Family Caregiver Alliance

“My dad isn’t working” was Eric’s only response – even with some gentle probing by a Family Specialist who is a licensed professional with the Caregiving Youth Project (CYP) of the American Association of Caregiving Youth (AACY) which is headquartered in Boca Raton, FL.

Eric’s life changed suddenly when one day his dad fell from a building and sustained head trauma.  He now has the debilitating effects of brain damage.  Eric and his family – his mom has asthma and had to go without proper medical attention – have lived in fear that they would be split up – so he suffered silently – as did his grades – until the CYP came beside the family. Not even his guidance counselor was aware of the family situation!

Now the family has some new resources, mom has medical care and asthma medications and dad has needed medical equipment, including a wheelchair so he can spend some time outside.  Eric has learned that he’s not the only one whose dad is disabled and whose mom has asthma. He has someone to talk to, will be receiving tutoring and knows he will stay with his family. He looks forward to some time away at the CYP overnight Camp Treasure.

Today, in Palm Beach County, FL there are over 500 children in eight middle schools and 17 high schools who are currently receiving support and services from the CYP.  In their own words, these 500 consider themselves to be the “lucky ones”.

They are among the more than 1.3 million children in the United States, ages 8-18 years, who serve a family caregiving role (Young Caregivers in the US, 2005) . The caregiving responsibilities children have, especially when they are in single parent or grandparent homes, pretty much mirrors the work and the ramifications experienced by adult family caregivers.  Those adults that are employed may arrive late at work, have absences and may even have to quit their jobs.  The “job” of a child is to learn; they may miss school, be late or even drop out. Or, similar to Austin Fisher of Carrollton, Ohio they may incur ramifications for graduation because of absences; in Austin’s case, it was to care for his mom with terminal cancer.

So, why do 500 caregiving youth in Palm Beach County consider themselves “lucky”?  The CYP is their unified answer.  With CYP support, they know they are no longer alone, have new resources and feel more confident in their caregiving responsibilities.  With a needs-driven approach for supporting student-caregivers, the CYP has provided computers, printers and internet access for 120 enrollees.  Some students have received in home tutoring; their grades have improved. Others and their families have received much needed and otherwise unavailable respite.  They are achieving academically and growing personally – and, they are staying in school!

The CYP is the model program of the AACY, the only organization of its kind in the United States addressing the educational, emotional, social and physical issues affecting these youthful caregivers who provide care for ill, injured, elderly or disabled family members and who are shouldering responsibilities usually relegated to an adult.

As a partner with The School District of Palm Beach County, the CYP began services in 2006. Its purpose includes reducing the barriers that interfere with a child’s ability to focus in school and to learn.  While the CYP helps to crumble the barriers with direct services in school, at home and out of school, AACY works to increase the adult, student, health care provider, educator and community understanding of the responsibilities and challenges caregiving youth face.

In school, CYP holds skills-building/support groups, lunch-and-learn sessions and the Soaring Eagles Club that help its members to manage stress, depression, anxiety and isolation, meet new friends who share their challenges, find answers to caregiving questions, and help them to realize they are not alone in their family health situations and caregiving responsibilities.

CYP at-home programs link families with resources which may include access to medical care, supplies and equipment, assistance with food and financial issues as well as solve special health and safety needs including home repairs.

In every instance, CYP has helped to make a positive difference in the lives of this silent, vulnerable and hidden population of children – and their families.

In your daily life and in mine, there are visual cues to remind us that there are people who are homeless and hungry.  People in our family may have challenging illnesses; their journeys pull at our heart strings. Out of sight and out of mind, the work of caregiving youth and the challenges they face everyday are behind closed doors…they are in the shadows of our everyday lives.

The more the barriers can be reduced or eliminated, the more that caregiving youth can reach their full potential, especially in the classroom.  Supporting caregiving youth benefits both the students themselves and society overall.  The ultimate goal is for every US child caregiver to feel valued and supported and that no caregiving youth drops out of school because of family caregiving responsibilities.

What are some things that a person can do to support a caregiving youth?

  •  Be aware of  family health situations and the effects on the whole family, especially on children and their education;
  •  Know that parents & grandparents who are themselves overwhelmed may not realize the effects of family health situations on their children;
  •  Refer concerns about caregiving youth to the school nurse, social worker or guidance counselor;
  •  Foster relationships with community support services to strengthen caregiving families;
  •  Encourage caregiving youth to request help by calling their local information hotline;
  •  Advocate for caregiving youth with legislators, religious and business leaders, the public and in educational and professional groups ;
  •  Take a proactive role – contact AACY about developing a Caregiving Youth Project affiliate with a local non-profit in your community;

More about the American Association of Caregiving Youth

As a Florida based 501 (C) (3) non-profit corporation, the AACY began serving the greater Boca Raton community in 1998.  It was created by a dedicated and passionate group of businessmen, clergy and healthcare professionals.  Its work has evolved from a Robert Wood Johnson Foundation funded Faith in Action program to today where It addresses the needs of pre-teens, teens, families and professionals through education and awareness, research and direct services.  AACY collaboratively utilizes existing resources locally, regionally and nationally to effectively recognize and support the vulnerable and valuable role caregiving youth fill within the family, in the health delivery system and in an aging and diverse society.

For more information email info@aacy.org, visit www.aacy.org or call Dr. Connie Siskowski at 561-391-7401.

Do you know a caregiving youth who is facing hardship in this role? Please share with our caregiver audience in the comments box below.

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