School reentry for students with a chronic illness: a role for professional school counselors.
Subject: Chronic diseases (Care and treatment)
Chronic diseases (Forecasts and trends)
Student counselors (Practice)
Students (Diseases)
Students (Forecasts and trends)
Students (Education)
Author: Kaffenberger, Carol J.
Pub Date: 02/01/2006
Publication: Name: Professional School Counseling Publisher: American School Counselor Association Audience: Academic; Professional Format: Magazine/Journal Subject: Family and marriage; Psychology and mental health Copyright: COPYRIGHT 2006 American School Counselor Association ISSN: 1096-2409
Issue: Date: Feb, 2006 Source Volume: 9 Source Issue: 3
Topic: Event Code: 010 Forecasts, trends, outlooks; 200 Management dynamics Computer Subject: Market trend/market analysis
Geographic: Geographic Scope: United States Geographic Code: 1USA United States
Accession Number: 142682714
Full Text: Approximately 20% of all children have a chronic illness, and about one-third of that number experience consequences severe enough to interfere with school functioning and performance. This article describes challenges that schools face in their efforts to serve students with chronic illness and their families, and it suggests the role that professional school counselors can play in facilitating support.


Although estimates of the number of children dealing with chronic illnesses vary, it is generally agreed that 20% of all children have a chronic illness and approximately one-third of that number experience consequences severe enough to interfere with school functioning and performance (Graft & Ault, 1993; Newacheck & Halfon, 1998; Thompson & Gustafson, 1996). A chronic illness is defined as an illness that has no cure but is not necessarily terminal (Huegel, 1998), requires medical interventions over time, and can result in debilitating consequences (Thompson & Gustafson). Approximately half of all children diagnosed with a chronic illness are absent from school more frequently, sometimes for extended periods of time, and therefore may require educational adaptations (Geist, Grdisa, & Otley, 2003; Lehr, 1990; Lynch, Lewis, & Murphy, 1992; Shiu, 2001). Making a successful transition back to school is associated with more positive long-term outcomes (Bessel, 2001; Houlahan, 1991; Kagen-Goodheart, 1977; Prevatt, Heifer, & Lowe, 2000). The purpose of this article is to identify the challenges that schools face in their efforts to help students with chronic illness return to school, and to suggest the role that professional school counselors can play in facilitating support.


It is estimated that 4.4 million children, or 6.5% of all under the age of 18, have a chronic condition severe enough to interfere with participation in normal activities such as school (Newacheck & Halfon, 1998), and 1 million children are dealing with a chronic illness that limits their ability to attend school on a regular basis (Thompson & Gustafson, 1996). Phelps (1998) identified 96 diseases diagnosed in children and adolescents that can result in psycho-educational consequences or require a special education intervention. The most common childhood chronic illnesses are asthma, allergic disorders, digestive disorders, central nervous system disorders, and seizure disorders such as epilepsy (Newacheck & Halfon). See Table 1 for a listing of the most common chronic illnesses and an estimation of the number of school-age children affected by these illnesses (Huegel, 1998; Phelps; Thompson & Gustafson).


Many children with a chronic illness manage their disease and suffer few psychosocial or educational consequences. However, one-third of all children with a chronic illness do have difficulty dealing with the demands of their illness (Armstrong & Horn, 1995; Boekaerts & Roder, 1999; Fasciano, 1996; Geist et al., 2003; Sexson & Madan-Swain, 1993; Thompson & Gustafson, 1996). Children with chronic illness are absent more than healthy children (Fowler, Johnson, & Atkinson, 1985). For example, in the first year of treatment for leukemia, it is estimated that students will miss 40 days of school, and they will have inconsistent attendance during the following 3 years (Prevatt et al., 2000). In general, students with a chronic illness are absent 16 days as compared to 5.7 days absent for healthy children (Fowler et al., 1985). Absenteeism varies according to illness, with asthma accounting for the highest number or days absent (Thompson & Gustafson). The longer that children are away from school, the more difficult the transition back to school. Prolonged absences contribute to a sense of learned helplessness and despair, and they interfere with coping and the rehabilitative process (Houlahan, 1991).

Researchers have concluded that chronic illness has a direct impact on school achievement. Theis (1999) reported that 45% of students with chronic illness report falling behind in their schoolwork, often contributing to negative feelings toward school. At the high school level, 35% of students identified as "other-health impaired" had failing grades. Brown and Madan-Swain (1993) reviewed the literature concerning the impact of leukemia, the most common childhood cancer, and found a high incidence of neurocognitive deficits associated with radiation treatment. The deficits were reflected in short-term memory impairment, distractibility, motor speed, and perception, resulting in more special education placement and lower achievement and performance scores on math and reading tests as compared to healthy peers (Peckham, Meadows, Bartel, & Marrero, 1988; Taylor, Albo, Phelbus, Sachs, & Bierl, 1987).

Students with chronic illness are more likely to have behavior problems including internalizing problems such as depression, somatic complaints, social withdrawal, and high anxiety (Boekaerts & Roder, 1999). Students with a chronic illness do seem to be at greater risk for social isolation related to peer misunderstanding about the disease.


Returning to school is a critical factor in the effort to address educational and psychosocial needs of the student with chronic illness (Brown & Madan-Swain, 1993; Graff & Ault, 1993; Houlahan, 1991). Studies have demonstrated the benefits to the child when schools, families, and hospital teams work together to facilitate a return to school as soon as possible (Katz & Varni, 1993; Katz, Rubenstein, Hubert, & Blew, 1988; Prevatt et al., 2000; Spinetta & Deasy-Spinetta, 1981). From a psychosocial perspective, returning to school as soon as possible after the diagnosis of a chronic illness represents a return to normalcy (Sexson & Madan-Swain, 1993).

The Professional School Counselor's Current Role

The role that professional school counselors should play in supporting students with chronic illness and facilitating school return is unclear. In 2000, the author of this article surveyed 250 school counselors in a large, urban district (Kaffenberger, Edstrom, Hardison, & Perdu, 2002). School counselors stated that they provided a wide range of services to children with illness and their families, such as collecting homework, coordinating 504 plans, helping the teacher understand the nature of the student's illness, working with the peers of the student with chronic illness, negotiating credit for missed course work, and meeting with the parents, administrators, and teachers. But 71% of elementary school counselors and 83% of secondary school counselors said they felt unprepared to provide these services. Most said they scrambled to put together services in the days before the student's return to school. When asked whether they felt the need for training in this area, 75% of elementary school counselors and 83% of secondary school counselors said the), would welcome training and support.

Given the central role that professional school counselors play in schools, as well as their counseling and consultation training (Fasciano, 1996) and knowledge of community resources, counselors are in an ideal position to improve school reentry services for students with chronic illness. However, barriers interfere with the school counselor's involvement in the school reentry process. These barriers also explain why the needs of students with chronic illness and their families are not adequately met.

Barriers to School Reentry

Making the transition back to school is a complex, many-phased process that requires individualized services for each student (Fottland, 2000; Prevatt et al., 2000). The barriers and challenges to school reentry facing the three groups of stakeholders (families, medical teams, and school personnel) include a lack of communication, a lack of information and training, and unsupportive school system policies (Fasciano, 1996; Gaynon, 1993).

A lack of communication among the three groups is the greatest barrier to smooth school reentry (Armstrong & Horn, 1995; Gaynon, 1993; Prevatt et al., 2000). Families, devastated by the news that their child has been diagnosed with a life-threatening disease, reorganize in order to respond to the crisis and often limit contact with outsiders (Kaffenberger, 1999; Martin, Brady, & Kotarba, 1992). They delay contact with the school, mistakenly believing that school issues are no longer a priority or lacking the knowledge of how to access school resources (Gaynon; Peckham, 1993). Without a vehicle of communication, schools are unsure of their role and how to proceed.

A lack of information is another barrier to school reentry. Families and medical teams do not have specific information concerning the services that schools can provide. Schools lack information concerning the nature of the diagnosis and the medical needs of the child returning to school (Baskin, Saylor, William, Finch, & Carek, 1983; Henning & Fritz, 1983; Pallmeyer et al., 1986). Teachers report that they are unsure about how to handle classmates' questions or the teasing that may occur as a result of a student's altered appearance after treatment, or what the medical needs of the child will require of them (Baskin et al.; Henning & Fritz). The school staff's previous experiences with cancer or serious illness, in their own lives or in the school community, can impact their response to sick children and families.

A school system's regulations and policies concerning access to homebound instruction and special education and Section 504 services are also barriers to school reentry (Prevatt et al., 2000). Qualifying for homebound instructional services is often determined by policies that require that students are absent from school for 30 days before services can be authorized. Once students have qualified for homebound instruction they are not permitted to attend school, even to visit. Students with a chronic illness, such as cancer, diabetes, or asthma, need more flexible homebound services that would support them during the treatment and recovery period and would allow them to participate in school, as their health permits.

School personnel are sometimes slow to respond to the need for special education or 504 services for children dealing with short-and long-term consequences of their treatment, identifying low motivation and inconsistent attendance as a behavior problem rather than a result of the illness (Armstrong & Horn, 1995). Cancer treatments--surgery, radiation, and chemotherapy--have been associated with a higher incidence of learning disabilities and physical disabilities that impact school performance and may require special education services (Armstrong & Horn; Douglas, 1997; Sexson & Madan-Swain, 1993). Federal legislation, Public Law 94-142 and the Individuals with Disabilities Education Act Amendments of 1997 (U.S. Department of Health and Human Services, 2004), guarantees an appropriate education for all people, including students with chronic illness. Some students with chronic illness will qualify for special education services, and some may qualify for 504 services. Section 504 of the Rehabilitation Act of 1973 (U.S. Department of Health and Human Services) offers protection for students who have a physical or mental disability that limits a major activity. Section 504 requires that modifications to the learning environment be made to give the child access to educational opportunity. Examples of modifications for a child with a chronic illness might include a shortened day, modified and/or homebound instruction, or the opportunity to rest in the school clinic.

Model School Reentry Programs

Model school reentry programs that help children make the transition back to school have been described in the literature (Fasciano, 1996; Houlahan, 1991; Katz et al., 1988; Katz, Varni, Rubenstein, Blew, & Hubert, 1992; Prevatt et al., 2000; Sachs, 1980; Shields, Heron, Rubenstein, & Katz, 1995). Although model programs have been described, few programs exist that facilitate school reentry for students with chronic illness and improve communication between schools and medical teams. While there is agreement that a comprehensive school reentry program is ideal, staffing issues, funding, and a lack of supporting research data about the effectiveness of existing programs limit the number of programs being implemented.

Prevatt et al. (2000) reviewed 16 comprehensive school reintegration programs for students with cancer described in the literature, and they concluded that the components of an effective school reintegration program share six features. Model programs

* identify a school-based or medical team coordinator of services,

* provide direct services to the student,

* consult with the family,

* educate school personnel,

* provide information to classmates, and

* involve the medical team.

Central to the success of model programs is the identification of a liaison who coordinates the school reentry process (Shields et al., 1995). The liaison oversees the first phases of the transition process by conducting individual interviews or assessments with the family and the student. It is important for the liaison to have access to the family, the student, the medical team, and the school. The liaison meets with the parents to determine how they want information transmitted, and to assess resources and family support available. The liaison begins the school reentry process by providing information to the family about school services available, the importance of involving the school from the time of diagnosis, and the school reentry process.

The liaison works with the school to educate and inform school personnel. A workshop for teachers and administrators is recommended as the best vehicle for sensitizing school personnel to the unique needs of a child with cancer, and how to handle the classroom response to the sick child (Baskin et al., 1983). The liaison also is called in to work directly with classrooms and peers (Benner & Marlow, 1991). Finally, the liaison keeps the lines of communication open, passing along updated information and planning for school reentry.


The needs of students with chronic illness are not being met by current practices (Lynch et al., 1992; Prevatt et al., 2000; Shiu, 2001). Typically the transition process is put together in a piecemeal fashion, with families struggling to understand the school regulations, unsure of what their child will need and what the future holds. Schools scramble to find information about the diagnosis, the needs of children and ramifies, and available resources. Well-meaning professional school counselors and school personnel, lacking clarity about their roles, knowledge about the illness and available resources, and training, feel unprepared to meet the needs of students and families.

Professional school counselors, by virtue of their training and knowledge of social, emotional, and academic needs of students, are ideally suited to play a greater role in school reentry for students with chronic illness. Professional school counselors, however, will not be prepared to assume this role without training and the support of supervisors and school administration.


Professional school counselors are positioned to coordinate a range of support services to the family, the student with chronic illness, the siblings, and the school staff throughout the period of diagnosis, treatment, aftercare, and school reentry. Providing support to students and families will need to be negotiated to respond to the unique qualities of each illness and the particular needs of each student and family. The school counselor's involvement with the student, family, and school will be especially important as the uncertainties of the initial diagnosis and treatment unfold. The following strategies are offered to guide school counselors' involvement in the school reentry process (Graft & Auk, 1993; Houlahan, 1991; Katz et al., 1988; Prevatt et al., 2000).

Suggested Strategies for Working with the Family

School counselors should be encouraged to contact the parents as soon as possible after learning of the diagnosis. Ideally, the counselor should offer to meet with the parents in person. During the initial crisis period, parents may not know what they need or how to proceed. If the school counselor can make some useful suggestions, provide information about school services, or structure a course of action, it is likely that the parents will respond positively (Kaffenberger, 2004; Lynch et al., 1992).

During the first contact or meeting, the counselor should begin to negotiate a role with the family, asking how the family wants information among school, home, and hospital to be shared. School counselors may be asked for information about community resources, or to coordinate support from school, church, or neighbors. During this meeting the school counselor can assess the level of support that the family will need and can expect to receive from extended family and the community.

A meeting with school personnel and the family should be scheduled as soon as possible after the diagnosis. The purpose of this meeting is to share information about the diagnosis, the needs of the child, the support the school will provide, and the way information will be shared. School personnel who should attend this meeting could include the school administrator, professional school counselor, classroom teachers, physical education teacher, school nurse, and social worker. If the student will be out of school for extended periods of time, homebound services should be requested and plans for school reentry should begin. Parents will need to know whom they should contact with updated information. How the illness will be discussed with other school personnel and students also should be discussed at this meeting.

One of the most important roles for school counselors involves preparing for the student's return to school. Planning should begin from the time of diagnosis (Kaffenberger, 2004). Counselors can provide the parents with information about homebound instruction, policies, tutors, the possible need for special education and 504 services, and preparation for school reentry. Parents may be concerned about teasing, catching up on missed schoolwork, and how the teacher will respond to their child (Baskin et al., 1983; Benner & Marlow, 1991). These concerns can be addressed if the dialogue between home and school continues throughout the periods of school absence.

School counselors who have played an active role from the beginning will be in a position to provide support to the family should the student's health deteriorate or if the child should die. The counselor's previous preparation in working with families dealing with the death of a child and grief counseling with the family, siblings, and school community will prove invaluable.

Suggested Strategies for Working with the Student with Chronic Illness

The school counselor also can provide direct support to the student with chronic illness (Ross, 1984). With the permission of the parents, the school counselor can contact a member of the student's medical team in order to receive information about the treatment, post-treatment, and recovery period. The school counselor should work with the student and the family to determine what to expect when the student returns to school, and what would be helpful through the treatment and recovery period. Some students want as much contact as possible, including cards, phone calls, and visits. Videotapes of the class, e-mail, and phone calls can keep the student in touch with school and peers. Other children, especially some adolescents, prefer to limit contact with the school and to receive support from close friends and only a few teachers. Individual differences need to be respected. School counselors also may provide counseling as needed to support students with chronic illness as they reenter school.

Families differ greatly in how much school involvement they want and how much information they want shared with the school. Professional school counselors will need to be sensitive to cultural and religious differences concerning the meaning of illness, and how this will impact the school's response and support.

Suggested Strategies for Working with the Siblings

School counselors are in a unique position to support the siblings of the child with chronic illness (Wallinga & Reed, 1990). Siblings are often the forgotten members of the family (McKeever, 1983; Thompson & Gustafson, 1996). Lacking confidence about how to help siblings, school personnel often miss the opportunity to support them. While family resources rally around the sick child, siblings arc often left to fend for themselves (Kaffenberger, 1999). Well-meaning neighbors or relatives are given responsibility for caring for siblings. At a time of family crisis and uncertainty, siblings' questions often go unanswered and the emotional support of parents is missing. Years after the family crisis period, siblings continue to report their sadness and resentment about the lack of support they received (Kaffenberger).

School counselors may be in the best position to be an advocate for siblings. They can provide siblings with the time and support necessary to express feelings, tell their story, and cope (Wallinga & Reed, 1990). They can help the school community understand the needs of the sibling and provide support. School counselors also can help parents understand the short-and long-term impact of the illness experience on siblings. School counselors may be able to suggest ways to involve healthy siblings in the care and support of their sick brother or sister. Support groups at school or in the community also can be effective in supporting siblings (Johnson, 1997). The most important role the counselor can play is giving siblings a safe place to express their needs and talk about their experiences (Wallinga & Reed). Johnson identified the following goals for counseling siblings: (a) validate the healthy children's feelings about their sick brother or sister, (b) normalize the experience, (c) provide direct information about the illness and treatment, (d) facilitate open communication among family members, (e) encourage involvement with their sick brother or sister, (f) identity, positive aspects of the experience, and (g) cultivate age-appropriate coping strategies (p. 421).

Suggested Strategies for Working with the School Community

The school counselor can help school administrators, teachers, and students understand their role in supporting the child, family, and siblings. School counselors may be asked to conduct or arrange classroom workshops to sensitize peers to the needs of the sick student. Peers want to know about the illness (Kaffenberger, 2004). They want to know if the illness is contagious, whether the child will die, and what it's like to have the illness (Peckham, 1993; Treiber, Schramm, & Mabe, 1986). Even a brief workshop or presentation has a significant impact on classmates' knowledge, decreases worries, and increases their willingness to interact with the student with chronic illness (Benner & Marlow, 1991; Treiber et al.). When the student with chronic illness is in middle or high school, it is recommended that the workshop be conducted either in a science class, to emphasize the medical components of the illness, or in homeroom, to emphasize the social-emotional impact of the illness experience. Adolescent peers are more likely than younger children to personalize the experience and, therefore, should be encouraged to process those feelings.

School counselors also are encouraged to provide a workshop for school faculty and staff (Kaffenberger, 2004). Although the time commitment involved in organizing such a workshop is extensive, the payoff is worthwhile. In one study (Baskin et al., 1983), teachers reported that participating in a workshop provided needed information about the medical and emotional impact of the illness, resulted in normalization of teacher behaviors, and had a genuine impact on how teachers treat students with cancer (Prevatt et al., 2000).

Preparing for a Proactive Role

What can professional school counselors do to prepare for the near certainty that a student in their school will be diagnosed with a serious chronic illness? School counselors can begin gathering information about resources in their schools and communities. They should begin by familiarizing themselves with school district policies, such as the homebound instruction procedures, and how to access these services. School counselors may be asked to link homebound instructors with classroom teachers in order to make instruction as relevant as possible. School counselors also need to be fully aware of the special education and 504 regulations available to students with chronic illness. School counselors may need to help parents understand what services are available and how to access those resources. As mentioned previously, school counselors surveyed by this author stated that they felt unprepared for the role they are asked to play in providing services for students with chronic illness (Kaffenberger et al., 2002). They responded that they need information and training. Coordinators of school counseling programs at the district level should be encouraged to develop training procedures and to coordinate services with administrators, school social workers, and school nurses.

School counselors also should begin developing their knowledge of chronic illnesses and gather resources that will be available to school personnel, families, siblings, and students at the school. There are many books and Web sites (see Appendix A) specifically for students, families, and schools that provide resources, information, and support. Finally, professional school counselors need to advocate for the academic needs of students with chronic illness by educating school leadership concerning the need for program development, expanded services, and training.


Professional school counselors are in a unique position to coordinate school support services for students with chronic illness. Given the growing number of students returning to school who have chronic illnesses, and their unique needs for services, school counselors have the responsibility to be prepared for a role in the school reentry process. School counselors are encouraged to make early contact with the family and to negotiate how the student and family will be served, what services will be needed, and how the school will communicate with the family. In order to assume this role, and prepare for it, school counselors will need training and access to information and resources. Additionally; school system leadership will need to mandate and underscore the importance of the professional school counselor's role in the school reentry process.


Resources for Working with Families and School Communities When a Student Has a Chronic Illness

Recommended Reading

Huegel, K. (1998). Young people and chronic illness: True stories, help, and hope. Minneapolis, MN: Free Spirit Publications.

Meyer, D. J., & Vadasy, P. F. (1994). Sibshops: Workshops for siblings of children with special needs. Baltimore: Paul H. Brookes Publishing Co.

Singer, A.T.B. (1999). Coping with your child's chronic illness. San Francisco: Robert D. Reed Publishers.

Recommended Reading for Children

Krisher, T. (1992). Kathy's hats: A story of hope. Morton Grove, IL: Albert Witman & Company.

MacLellan, S. N. (1998).Amanda's gift. Roswell, GA: Health Awareness Communications.

Meyer, D. (1997). View from our shoes: Growing up with a brother or sister with special needs. Bethesda, MD: Woodbine House.

Mills, J. C. (1992). Little tree: A story for children with serious medical problems. New York: Brunner/Mazel, Inc.

Saltzman, D. (1995). The jester lost his jingle. Palos Verdes Estates, CA: The Jester Co., Inc.

Vadasy, P., & Meyer, D. J. (1996). Living with a brother or sister with special needs: A book for siblings. Seattle, WA: University of Washington Press.

Online Resources for Information and Support

Allergy and Asthma--National Pollen Network. Web site for the education of patients with allergies and asthma. Provides national pollen rate updates, http://

American Diabetes Association. 800.342.3483. http://

American Heart Association. 800.AHA.USA1. Link pertaining to children, jhtml?identifier=1477

Arthritis Foundation. 404.965.7538. Link pertaining to arthritis in children, teens, and young adults, http:// www.a children_young_adults.asp

Association of Online Cancer Resources. Provides list-serves, online support, and related Web sites for children and adults dealing with cancer,

Band-Aids and Blackboards. This child-friendly Web site was created by a nurse educator to help children and teens cope with chronic illness and returning to school. bandaides/

Brave Kids. Online resources for children with chronic and life-threatening illnesses,

CancerSourceKids. The Association of Pediatric Oncology Nurses provides helpful information for kids with cancer and their parents, http://www.cancersourcekids. com

Candlelighters Childhood Cancer Foundation. Provides support for children and families, http://www.

Children's Health Information Network. Congenital heart disease information, resources, and support for families and professionals,

Children with Diabetes. For children and families, http://

Crohn's and Colitis Foundation of America. 800.932.2423.

Cure Search. The collaborative efforts of the National Childhood Cancer Foundation and the Children's Oncology Group. nccfintro.aspx

Cystic Fibrosis Foundation. 301.951.4422.

DNA Interactive. Genetic disorders (hemophilia, sickle cell, cystic fibrosis, Tay-Sachs, neurofibromatosis, etc.) resources and information, mason/ygyh.html?syndrome=hemo

Epilepsy Foundation. 800.EFA.1000.

Juvenile Diabetes Research Foundation. 800.533.2873.

Kids With Heart National Association for Children's Heart Disorders. 800.538.5390.

Lymphoma & Leukemia Society. 800.955.4572. http://

National Mental Health Association. 800.969.6642. http://


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Table 1. Most Common Chronic Illnesses and Estimated Number of
School-Age Children Affected

Illness Group                Estimated Number   Prevalence Ratios
                               of Children      of the Illness in
                               Affected (a)       Children (b)

Asthma                        5,330,000         10 in 100
Cardiac                         533,000         1 in 100
Seizure disorders               266,000         5 in 1,000
Bleeding disorders               67,000         1.25 in 10,000
Childhood cancer                810,000         1 in 660 (c)
Inflammatory bowel disease      186,500         3.5 in 100,000
Juvenile arthritis               53,300         1 in 1,000
Cystic fibrosis                  26,600         1 in 2,000
Diabetes                         10,700         15-20 in 100,000
Sickle cell anemia                9,000 (d)       1 in 375
                                                  (African Americans)
Estimated total number of     7,292,100
children for 10 illnesses:

(a) Estimated children affected is calculated using prevalence ratios
and the U.S. Census Bureau population of school-age children in the
United States, July 1, 2003. U.S. Census Bureau figure: 53,274,227
(U.S. Census Bureau, 2005).

(b) Prevalence ratios from Health-Related Disorders in Children and
Adolescents (Phelps, 1998).

(c) Prevalence ratio from Adaptation to Chronic Childhood Illness
(Thompson & Gustafson, 1996).

(d) There are 50,000 sickle cell cases reported in the United States
(Phelps, 1998). The number of affected children was calculated
assuming an even distribution of disease among age groups and African
American school-age children as a proportion of school-age children
in the total population.
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