Connie Siskowski is at the forefront of efforts to identify, help, and bring national recognition to the children and adolescents in the United States who have dual roles as students and caregivers for ill, frail or disabled family members.
The New Idea
Connie imagines a society where caregivers of all ages are supported to succeed in their dual roles and where contributions to family and community health are broadly recognized and valued. To achieve this, Connie is assisting youth who have significant responsibilities for ill, aging or disabled family members complete their education and achieve success in their lives through a program taking place in Palm Beach County, Florida middle schools. The Caregiving Youth Project (CYP) is the only comprehensive program for youth caregivers in the United States.Connie believes that school is the work life of children. Just as employed adults can be physically, emotionally, psychologically, spiritually and financially stressed when they have significant care responsibilities at home, children in school also become stressed when they are providing substantial assistance, often on a regular basis, to relatives who need help because of physical or mental illness, disability, frailty associated with aging, substance misuse or other conditions. While adult caregivers miss work, youth caregivers miss school, and sometimes even quit to find a job to help support their family financially.Connie is changing the way the education system, social work and health care professionals as well as community organizations approach youth caregivers. Instead of having these children face disciplinary action or work with school counselors after they start to show signs of delinquency or strain from care responsibilities, she has developed a system that offers support to these children immediately to prevent them from having to choose between school and family. As a result, children are staying in school and families are staying together.While Britain and a few other countries have already initiated support for youth caregivers, Connie is creating a unique response to the challenges faced by hundreds of thousands of children in the United States who are still hidden from public view or consideration. Unlike programs outside the United States that stand alone outside social systems, Connie’s model integrates health, education and community systems in crafting holistic, mind-body-spirit solutions. It is the only known model that is providing wrap-around social support to youth caregivers in school, as well as in the home.
Caregiving youth are an invisible population in the United States. While we have visual cues because we can generally see people who are hungry or homeless, family caregiving by children happens behind closed doors, and as a result, is often ignored by professionals in education, healthcare and the community as well as the public. The first U.S. survey of America’s young caregivers was reported in 2005 by researchers at the National Alliance for Caregiving and the United Hospital Fund. It documented that nearly 1.4 million American youth take on additional responsibilities, often in very complex medical situations. Furthermore, in 2006, another report found that 22 percent of young adults who dropped out of school for personal reasons were caring for a family member.In Florida, a 2002 Palm Beach County-wide survey of middle and high school children in public schools showed that one in two children had a family member with a health problem. This survey, over-sampled for minority populations, showed that 90 percent of children in these families said they were participating in care, and about one in three youths said their performance in school suffered as a result. Caregiving in this context is not simply doing chores, but rather carrying the same responsibilities and burdens that adult caregivers face. In fact, these children can often function as home health care workers--giving injections, monitoring medications, talking to doctors and nurses, and changing diapers.However, there is a difference, of course, between health workers and youth caregivers. For example, a home health aide, even with training and certification, is limited in the medical tasks he or she is allowed to perform, while children can do almost anything for their family. Children take on these responsibilities for many reasons, primarily because they want to help and they love their relatives, but other factors are important as well. Sometimes they are assigned because there is simply no one else. Insurance, for instance, does not provide for on-going help at home, and the family can neither afford nor does it want outside help provided by “strangers.” In the United States, the challenge of juggling dual student-caregiver roles is experienced most widely among children and adolescents in marginalized, single-parent multigenerational minority and immigrant families.
As the Caregiving Youth Project works within a school, the school culture changes, with teachers, faculty, and other students’ better understanding that a child’s struggle with homework, projects or school activities and disruptive behavior may have its roots in the stress associated with their family health situations. Connie’s model achieves these results through a variety of ways, including:
Identifying caregiving youth in a particular school through a survey/eligibility process;
Assessing those youth most in need of support by identifying their Level of Responsibility, which takes into account the types of caregiving activities they perform and the time they spend doing them;
Providing a variety of information, counseling and skills-building services to strengthen youth’s problem-solving and caregiving skills, and to increase their confidence;
Reminding young people they are not alone in their role by providing Lunch and Learn sessions in school, inviting them to participate in school-based clubs, and sponsoring activities where they have an opportunity to talk, relax and play with other caregiving children who know what they are going through;
Conducting home visits to assess family needs and provide resources;
Promoting awareness, knowledge and understanding of caregiver youth among students, teachers, health and social service professionals and the broader community;
Encouraging educational success by providing computers and connectivity as well as in-home tutoring and mentoring through collaborating partners;
Advocating for youth with school system decision-makers to craft student caregiver-friendly policies and practices that support school engagement and success.
The success of the CYP is grounded in a close partnership with the School District of Palm Beach County, the fifth largest school district in Florida and the twelfth largest in the nation. Ann Faraone of Palm Beach County’s Department of Student Intervention Services works closely with Connie to integrate the CYP into the schools. According to Dr. Faraone, of the youth who drop out of school in the district, 80 percent are not failing academically, which further illustrates the need for intervention and support of kids in unique and difficult family situations.With support from local foundations, a multi-year $500,000 matching grant from the Robert Wood Johnson Foundation, and significant volunteer assistance, Connie began the CYP in Boca Raton Community Middle School during the 2006 to 2007 school year. In the years since, CYP has expanded and is now working in five middle schools serving more than 200 students and their families in Palm Beach County, with another 300 in various stages of identification and assessment.To lay the groundwork for spreading the CYP model beyond Palm Beach County, Connie founded the American Association of Caregiving Youth (AACY) as a national resource center and central hub for organizations in other counties in Florida and other states that want to support youth caregivers using elements of the CYP model and affiliate under the auspices of the AACY. Connie has been providing technical assistance for over a year to her first affiliate, the Caregiver Support Network in Pinellas County, Florida created by Sidney and John Goodman, major employers and philanthropists in the county who are also backers of a large intergenerational assisted living community in Largo.This year, Connie will incorporate the AACY as a separate non-profit organization and assume a full-time role as its Director. Her five-year vision for the AACY includes building a national board of directors, developing a system for identifying and training affiliates, producing how-to informational materials and on-site training programs for affiliates, enrolling affiliates in ten states, instituting a fee-for service capability to diversify and expand her revenue base, partnering with universities to study and publish on caregiving youth and CYP outcomes, and continuing to create and pursue public education opportunities through the media. Connie will also be working with national policy impact partners such as the National Alliance for Caregiving to educate key members of Congress and the Obama administration about the need to make youth caregivers eligible for federal support now available only to adult caregivers.
Friends and colleagues all describe Connie as a person of great integrity, humility, focus, competence and passion, driven by her faith and deep empathy for those in pain or difficult circumstances. Like the lives of the youth caregivers she has been called to help, Connie’s childhood was defined by the conditions and experiences surrounding her role as a caregiver in Nutley, New Jersey. Her parents separated before she was born and she and her brother and mother lived with her grandparents. From her beloved grandfather, a plumber, traveling salesman and small business entrepreneur, Connie received the love, protection and guidance that the rest of the adults in her family did not provide. When her grandfather became ill and unable to care for himself, Connie was the one who took care of him in a household of modest means.After her grandfather passed away when she was in the eighth grade, Connie worked as a candy striper at a local hospital, volunteered with the junior first aid squad, and went on to attend the Johns Hopkins Hospital School of Nursing on scholarship. After becoming a cardiac nurse specialist and earning a Bachelors and Master’s Degree in Public Administration, Connie moved to Florida, where her career took her into the homes of people managing chronic illnesses. She found investor partners to start a healthcare company, MD to You, which sent doctors into the home. In the mid-1990s, Connie became involved in family caregiving issues and in 1998 with seed funding from the Robert Wood Johnson Foundation’s Faith in Action Program, Connie founded and still currently directs Volunteers for the Homebound and Family Caregivers (VHFC), Inc. to promote dignity and independence for homebound persons and family caregivers of all ages in Palm Beach County.Connie was conducting her own studies on caregiving youth in the greater Boca Raton community and Palm Beach County as early as 2002 and that research gave impetus to the first U.S. survey on youth caregivers in 2005, and launched the pilot Caregiving Youth Project in Palm Beach County in 2006. Today, Connie is recognized in her field not only as the leading scholar-writer on youth caregiving, but also as its leading social entrepreneur.