April 23, 2015 Boca Raton, FL
-- More than 150 community supporters and professionals recently participated in the Caregiving Youth Institute Conference (CYI). The Institute was established last year bythe American Association of Caregiving Youth (AACY) to promote awareness and present solutions to the problems confronting more than 1.4 million youth caregivers, ages 8- 18 years, in this country.
The group of educators, clinicians, social and human service workers was welcomed by Dr. Connie Siskowski, AACY Founder and President and Joe Kraus, Chairman of the organization's Board of Directors. Before the informational sessions started, Dr. Ian Saltzman Superintendent of Palm Beach County Schools and Area 1 attested to the vital support that nearly 1 ,000 middle and high school students and their families in Palm Beach County have received to assure education continues and future success is possible.
Experts in the fields of healthcare, education, human services and government resources from across Florida and as far as Wisconsin and Maryland shared profiles and research findings about this hidden population and the stress, trauma and loneliness from which they suffer. A panel, facilitated by Josephine Kapellini of Caring Across Generations in Washington that included Linda Roman, Director of Community Impact for Education at United Way of PBC, Beth Levine, COO, of Ruth Rales Jewish Family Services and Ben Durgen Aide to Senator Joseph
Abruzzo urged that we all continue to work together to improve the resources and support for this hidden population of children.
A highlight of the day was the Keynote Address delivered by Carolyn Kelly who has 18 years of experience in leadership roles at the Federal, State, Regional and Local levels. Prior to moving to Florida she was the Director of the South Carolina Coastal Program and the first female to
hold this prestigious position. For nine years she oversaw all aspects of the program, including harbor deepening port expansion and beach renourishment, all Coastal Regulatory permitting and off-shore issues and initiatives.
Now, as "First Lady of Florida Atlantic University," she is focusing on creating economic partnerships as she builds relationships with the South Florida community. Particularly significant is Carolyn's experience, beginning at age 14, as a caregiver for her mother. Her story captured the audience.
"This was something I wanted to do," she said. Her two brothers were not up to the task and her father handled none of the responsibilities. Because the diagnosis was a rare disease, treatments like radiation and chemical infusion necessitated Carolyn to spend long periods of
time in hospitals. "I spent a lot of time sleeping in chairs, decorating her room, researching medications and interpreting for my mother what the doctors really were saying. As I grew older, I ended up having dinner dates in the hospital cafeteria," she recalled.
Carolyn didn't share the burden of her responsibilities with her friends. She couldn't spend much time socializing after school. When classmates are at basketball practice, play rehearsal, working on school projects, or just hanging out with friends, caregiving youth usually are
providing medical care and personal care, language translation in medical settings and emotional support. "Many times these youngsters are also responsible for the typical everyday responsibilities of running a household including shopping for groceries, preparing meals
preparation and performing housekeeping chores," explains Connie Siskowski.
"My priorities were different," Carolyn affirms. She says she really missed having anyone her own age who could understand her feelings and frustrations.
"Psychologically these young caregivers can suffer from anxiety, feelings of isolation and depression and there are physical impacts as well," says Julia Belkowitz, MD, Assistant Regional Dean for Students and Assistant Professor at University of Miami Miller School of Medicine.
"Normal growth and development can be compromised and the child neglects their own personal medical needs, missing appointments and not receiving necessary immunizations." Belkowitz and her colleagues worked with the American Association of Caregiving Youth (AACY) to better understand the experiences of Palm Beach youth caregivers. They found that caregiving affects academic performance and that the youngsters who provide care often are unable to complete assignments or participate in co-curricular activities. Too frequently, they would miss school altogether.
Carolyn Kelly says she missed many days of school and never shared the real reason with any teachers or other students. "I had been an 'A' student, but my grades slipped because of the mediocre work I produced. One of my teachers eventually recognized something was going on," she says.
Today, Carolyn Kelly is a strong advocate for the role AACY plays in educating school administrators and teachers about the needs of children who bear the responsibility of taking care of a parent, sibling or grandparent, regardless of whether it occurs during the school day
or after the final bell has sounded. She is happy to see that youth caregivers can find support at school during skills-building classes, support groups, and lunch and learn sessions sponsored by the Caregiving Youth Project (CYP), an AACY program .She is grateful for the way the group is able to link families with resources, provide computers, tutoring and solutions for special needs. Outside of school CYP creates opportunities for its participants to spend time with their peers during overnight camp, fishing, picnics and dinners along with other and recreational activities.
The Caregiving Youth Institute (CYI) was established in 2014 by the American Association of Caregiving Youth with the goal of raising awareness of the needs of caregiving youth and promoting solutions for support through a series of initiatives called C.A.R.E. The United
States lags behind other countries focusing attention on the four distinct elements of C.A.R.E. which are connection, advocacy, research, education as they relate to the issues confronting this growing hidden population of our youth. The only national study released in 2005 needs to be updated to reflect the growing numbers of caregiving youth who are yet unrecognized by the healthcare and education professionals as well as community leaders.
The Caregiving Youth Institute is made possible by an initial grant from the Schmidt Family Foundation, a charitable organization that funds local non-profit 501(c)3 organizations because it "shines a light on the challenges of caregiving youth, an under-recognized healthcare issue not
only in our community, but across the nation."
For more information, please contact Dr. Connie Siskowski at 561.391.7401 or email