6
Assuring Appropriate Educational Support Services

Going back to school or work following cancer treatment can signal a return to normalcy. Some survivors of childhood cancer are, however, left with persistent late effects of treatment that may interfere with their ability to receive an education or obtain gainful employment. Neurocognitive deficits, functional and sensory limitations, and symptoms such as fatigue are examples of late effects that can hamper educational and vocational success. Prolonged absence from school during illness may also slow educational progress and keep survivors from advancing to higher grade levels along with their peers.

This chapter first briefly reviews the prevalence of school-related disabilities among survivors of childhood cancer. Next, programs are described that are designed to assist cancer survivors and their families in reentry into school following treatment. The chapter concludes with a brief review of federal laws that protect the educational and employment rights of individuals with disabilities. This chapter draws heavily upon a review of educational issues for children with cancer published in 2002 (Leigh and Miles, 2002). In addition, two background papers commissioned by the Board were helpful in preparing this chapter, “Cognitive Late Effects of Childhood Cancer and Treatment: Issues for Survivors,” by F. Daniel Armstrong, and “Policy Recommendations to Address the Employment and Insurance Concerns of Cancer Survivors,” by Barbara Hoffman (www.iom.edu/ncpb). See Chapter 4 for a review of cognitive late effects, their implications for school achievement, and the limited research on interventions to ameliorate cognitive late effects.



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6 Assuring Appropriate Educational Support Services Going back to school or work following cancer treatment can signal a return to normalcy. Some survivors of childhood cancer are, however, left with persistent late effects of treatment that may interfere with their ability to receive an education or obtain gainful employment. Neurocognitive deficits, functional and sensory limitations, and symptoms such as fatigue are examples of late effects that can hamper educational and vocational success. Prolonged absence from school during illness may also slow educational progress and keep survivors from advancing to higher grade levels along with their peers. This chapter first briefly reviews the prevalence of school-related disabilities among survivors of childhood cancer. Next, programs are described that are designed to assist cancer survivors and their families in reentry into school following treatment. The chapter concludes with a brief review of federal laws that protect the educational and employment rights of individuals with disabilities. This chapter draws heavily upon a review of educational issues for children with cancer published in 2002 (Leigh and Miles, 2002). In addition, two background papers commissioned by the Board were helpful in preparing this chapter, “Cognitive Late Effects of Childhood Cancer and Treatment: Issues for Survivors,” by F. Daniel Armstrong, and “Policy Recommendations to Address the Employment and Insurance Concerns of Cancer Survivors,” by Barbara Hoffman (www.iom.edu/ncpb). See Chapter 4 for a review of cognitive late effects, their implications for school achievement, and the limited research on interventions to ameliorate cognitive late effects.

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DISABILITIES AMONG SCHOOL-AGE CANCER SURVIVORS An estimated 5.5 percent of school-age children and adolescents (age 5 to 17) in the general population have chronic health conditions or impairments that contribute to an inability to attend school at all (0.6 percent), a need for special school or classes (3.7 percent), or a limitation in the amount of school attendance (1.2 percent) (Wenger,1995). There are few estimates of the proportion of survivors of childhood cancer with limitations that may affect school performance. Educational outcomes among survivors of acute lymphoblastic leukemia (ALL) and central nervous system (CNS) tumors have been assessed because they are generally exposed to treatments that can affect neurocognitive function (see Chapter 4). These cancers make up about 50 to 60 percent of newly diagnosed cases of childhood cancer and so, represent a significant share of the survivorship population. The largest study of educational outcomes to date suggests that ALL survivors have lower grades, enroll in special education or learning disability programs at three to four times the rate of their siblings, and when enrolled in such programs, spend a longer time in them as compared with their siblings. ALL survivors are also at higher risk of missing school for long periods and of repeating a year of school. On the other hand, most ALL survivors had rates of high school graduation, college entry, and college graduation that were similar to those of their brothers and sisters. Only survivors treated with 24 Gy of cranial radiation and those diagnosed at a preschool age were at higher risk for poor educational performance (Haupt et al., 1994) (see Chapter 4 and Table 4.3 for details of this study). The cohort of survivors treated in the 1970s and 1980s were at especially high risk for school-related problems because many of them were treated with 24 Gy of radiation. Few children with ALL now receive doses of cranial radiation this high, but the effects on school performance of treatment regimens common in the 1990s that relied on higher doses of chemotherapy have not yet been determined. Among the general population, an estimated 11.2 percent of school-age children (age 6 to 17) are enrolled in federally sponsored special education programs (Department of Education, 2001).1 Roughly 30 to 40 percent of 1   The percentage of school-age children enrolled in federally sponsored special education programs (11.2 percent) is higher than the earlier mentioned estimate of children and adolescents with a chronic health condition or impairment and a disability related to schooling (5.5 percent). Many children enrolled in special education programs have learning disabilities that may not have been considered a chronic health condition or impairment in the survey from which the lower estimate was derived.

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ALL survivors would be expected to be in special education programs if the three- to fourfold increase in use of special educational programs among survivors of ALL documented by Haupt and colleagues can be applied to survivors treated after the mid-1980s (Haupt et al., 1994). Other survivors of childhood cancer may not experience neurocognitive late effects, but need special accommodations because of physical limitations that impede participation in school-related activities. Irrespective of education placement upon reentering school following diagnosis and treatment, childhood cancer survivors and their families, teachers, and classmates can benefit from special transition services. SCHOOL REENTRY INTERVENTIONS Children are often absent from their regular school during periods of treatment and generally receive at least some educational services at home or in the hospital. School districts nationally vary tremendously in their guidelines for providing such services, the amount of weekly teaching provided (from a few hours per week to daily contacts), and in the preparation and familiarity of teachers in these settings to meet complex educational needs during limited teaching contacts. A child’s educational experience may lack continuity if he or she goes back and forth between hospitalizations and home and/or school over the course of treatment. A return to their familiar school and classmates following treatment can be a long- awaited event, but can also raise fears about peer teasing or the ability to resume a pre-cancer level of activity and function. A school with 500 to 1,000 students may have a student with cancer enrolled every few years, but given the rarity of new cases of childhood cancer, most teachers would not be expected to be familiar with the physical and psychosocial issues related to childhood cancer. Teachers may become more familiar with these issues as the number of childhood cancer survivors increases. Organized educational programs for teachers and classmates have been successful in reducing problems associated with school reentry (Leigh and Miles, 2002). A well-defined and planned hospital/school program is necessary for hospitals, according to the International Society of Paediatric Oncology (SIOP) Working Committee on Psychosocial Issues in Pediatric Oncology (Masera et al., 1995). Programs vary in their approaches, but a general plan for school reentry has been described (Box 6.1). Children may experience emotional, behavioral, or social problems at school reentry, may have physical needs (e.g., related to fatigue, mobility problems), and may have cognitive effects of treatment (Loman and Vincent, 2002). Children at highest academic risk include children with CNS-involved disease, a history of school problems, numerous or extended ab-

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sences, and children who speak English as a second language (Loman and Vincent, 2002). Relatively little is known about the availability of school reentry programs, but a survey conducted from November 2001 through spring 2002 of 238 Children’s Oncology Group (COG) institutions (55 percent response rate; 130 institutions) indicates that fewer than half of responding institutions (42 percent) had a formal program and roughly half (52 percent) had some services. Most programs had support from the hospital or department (54 percent) and from donations or grants (20 percent). Programs often provided (Loman and Vincent, 2002): home tutoring, communication between school, medical team and family, education for parents and children regarding going back to school, school staff consultation at the time of reentry, advocacy information for parents and individual education plan (IEP) help, neuropsychological evaluations,2 individual or family therapy, and class presentations. Another study of support services available to cancer survivors within National Cancer Institute (NCI)-designated comprehensive cancer centers found only 7 of 37 (19 percent) centers with school re-entry programs (Tesauro et al., 2002). Most of the school-based educational programs that are responsive to the needs of survivors of childhood cancer are in place following the enactment of federal laws to protect the educational and employment rights of individuals with disabilities. FEDERAL LAWS AND PROGRAMS3 Three federal laws protect the educational and employment rights of individuals with disabilities: the Individuals with Disabilities Education Act (IDEA) of 1975 and IDEA amendments of 1997 support states to ensure the provision of free appropriate public education of children with disabilities (age 3 to 21); 2   Neuropsychological evaluations were provided by nearly two-thirds of institutions. 3   Much of this section is excerpted directly from the chapter in Principle and Practices of Pediatric Oncology, “Educational Issues for Children with Cancer” (Chapter 50) by Leigh and Miles (2000).

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Box 6.1 Phases of School Reentry for Children with Cancer Phase 1: Initial hospitalization and plans for reentry As a first step, a hospital-based school liaison should be identified soon after diagnosis to work with parents as an advocate for the child and to serve as a bridge between the hospital and school personnel. The importance of a child’s returning to school and to other normal activities should be discussed early as part of the treatment plan by physicians. Schools are responsible for providing a teacher for instruction if a child is home-bound or in the hospital and close to school. The school district in which the hospital is located may be responsible for providing education for children being cared for far from home. Some school systems lend laptop computers to students who are hospitalized so that they can use e-mail to send assignments and maintain communication with classmates. Other technologies that may be available include video teleconferencing with a child’s classroom and the use of computer programs and the Internet. With the parent’s permission, the school liaison can work with the teacher, counselor, or both to provide appropriate information to an affected child’s classmates about the diagnosis and the anticipated length of absence from school. Factors that can affect educational outcomes should be documented including information on any pre-existing learning disabilities or chronic illness, and the specific nature of the cancer and its treatment. Neurocognitive testing begins before treatment and plans should be made for repeated assessment to detect emerging treatment-related disabilities that may not be seen for several years after treatment. Phase 2: Contact and education of school personnel All children should be given the opportunity to express their individual concerns and information should be provided about services available to assist them upon the Rehabilitation Act (section 504) provides a broader set of protections for individuals of all ages with disabilities to ensure that discrimination does not occur within any program in receipt of federal funds. the Americans with Disabilities Act (ADA) prohibits discrimination of persons with disabilities of all ages in both public and privately supported agencies and business and requires that persons with disabilities receive reasonable accommodation. These laws apply to every level of education, from preschool to college and vocational education. Although these laws are federal, local and state governments interpret and implement them differently (Root et al., 1993). Any services needed by children in school, such as special education or classroom accommodations, have to be identified in a formal written plan according to specifications in the IDEA or in section 504 of the Rehabilitation Act. The written, signed plan protects affected children’s rights and

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their return to school. A presentation about illness and treatment to classmates or teachers can provide children and classmates with examples of what can be said or how situations can be handled. Parents need reassurance to assuage fears, for example, that their child will be exposed to infections or that they will not be able to cope. Parental reactions, such as separation anxiety, may need to be assessed. An interview with teachers can help them appreciate realistic academic expectations of the returning student and prepare them for the psychosocial issues that may emerge following school reentry. Peer education may ease misconceptions regarding cancer, aid classmates in their desire to be helpful, and forestall teasing or other inappropriate behaviors. Phase 3: Follow-up contact Frequent communication between school personnel and the school liaison should continue following school reentry to assess how children are adjusting to the school environment and to ensure the receipt of appropriate educational and supportive services. A schedule of follow-up testing for high-risk children is recommended because neurocognitive deficits may not appear until 2 to 4 years following treatment. In the long term, transitional services to support college entry or vocational training may be appropriate if accommodations are needed because of a learning or other disability. For terminally ill children, continued school participation may also be important. School participation can change from school attendance to home-bound services or any combination of the two to accommodate terminally ill children’s physical problems or minimize their discomfort. At some time, academics will no longer be appropriate, and teachers may want to engage children in other activities. Mental health consultation may be needed to support not only the child and their caregivers, but also teachers and classmates. SOURCE: Adapted from Leigh and Miles, 2002. provides documentation needed by parents if the services are not provided appropriately. Individuals with Disabilities Education Act The Individuals with Disabilities Education Act (IDEA) (20 U.S.C. 1400 et seq.) establishes a federal grant program to assist states in providing children with disabilities with a “free, appropriate public education which includes special education and related services, to meet the unique needs of all disabled individuals between the age of three and 21” (34 Code of Federal Regulation [CFR], Sec. 300.1[a]). Special education is defined as “specially designed instruction, at no cost to the parents, to meet the needs of a child with a disability” (34 CFR, Sec. 300.17). Special education includes services ranging from simple classroom accommodations in a regular classroom to all-day placement in a resource room environment to

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instruction in the home, hospital, or other institution. Related services refers to transportation, corrective, and other supportive services that are required for children with a disability to benefit from special education. These include audiology and speech pathology, psychological services, physical and occupational therapy, recreation, counseling services, school health services, social work services in schools, and parent counseling and training (34 CFR, Sec. 300.16). Available classroom accommodations may include use of a scribe or tape recorder to take notes, shortened class or homework assignments, provision of information instead of copying from a board or book, preferential seating, more time for tests or written work, oral testing, and permission to leave class early to avoid accidental injury caused by travel through crowded hallways. Although schools are not required to provide all medical services, they must provide certain medical services that are necessary to implement the IEP. For example, a child who uses a catheter is entitled to the services of a school nurse or other trained personnel to help keep the catheter clean during the school day. Education must be provided in the least restrictive setting and where possible, school districts are required to provide children with disabilities an education in the regular classroom setting. To receive special education services under provisions of the IDEA, children must meet criteria for classification under at least one of several categories: mental retardation, hearing impairment, vision impairment, speech or language impairment, serious emotional disturbance, autism, deaf-blindness, traumatic brain injury, specific learning disability, orthopedic impairment, other health impairment, or multiple disabilities. Most children with cancer are eligible for services under the category “other health impairment,” defined as “a child who has limited strength, vitality, or alertness due to chronic or acute health problems, such as heart condition, tuberculosis, rheumatic fever, nephritis, asthma, sickle cell anemia, hemophilia, epilepsy, lead poisoning, leukemia, or diabetes which adversely affects educational performance” (34 CFR, Sec. 300.7). A physician often completes a form to verify the diagnosis, treatment, and related impairments to facilitate the eligibility determination process. Eligibility for services are, in part, determined by evaluations of aptitude and achievement. Eligibility for IDEA services under the category specific learning disability requires a discrepancy of one standard deviation (15 points) between measured intelligence quotient and measured academic achievement. For children treated for cancer, this discrepancy may not show up for years and for that reason, many children with cancer receive services under the IDEA category “other health impairment” or under section 504 of the Rehabilitation Act (see discussion below). These categories for eligibility do not require the use of a discrepancy score. Under IDEA, reassessments are made every three years. However,

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evidence suggests that neurocognitive testing to identify deficits following treatment of ALL or CNS tumors should be conducted more frequently with the timing and intensity of testing determined by the child’s age at the time of treatment, interval since treatment, and anticipated potential areas of difficulty based on typical developmental trajectories (Armstrong, 2002). Thus, for some children, evaluations every 12 to 18 months may be necessary during periods of rapid development, and for others, evaluations every 2 to 3 years may be adequate during periods of less rapid development. Although a psychologist with expertise in the appropriate psychometric tools may be needed to administer and interpret these tests, third party payers usually do not cover the cost of testing outside of the school system. If a child is determined to be eligible for services, an individual education plan (IEP) is designed by a multidisciplinary group of school staff, parents, and sometimes, the child. After the IEP is signed by all participants at the meeting, it becomes a legal document that, by law, the state must carry out as written. The goals and objectives of the IEP are reviewed annually, and the IEP is rewritten if necessary. Every 3 years, the child is reassessed. Beginning at age 14, each student’s IEP must include specific transition-related content and beginning no later than age 16, a statement of needed transition services. Transition services are defined as “a coordinated set of activities for a student, designed within an outcome-oriented process, that promotes movement from school to post-school activities, including post-secondary education, vocational training, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation. The coordinated set of activities must be based on the individual student’s needs, taking into account the student’s preferences and interests; and must include needed activities in the areas of instruction, community experiences, the development of employment and other post-school adult living objectives and, if appropriate, acquisition of daily living skills and functional vocational evaluation” (34 CFR, Sec. 300.29). The IDEA also mandates early intervention services for infants and toddlers who are either disabled or at risk of developmental delays. These services are provided either by school systems or by the state health department. Parents have specific rights under IDEA, including a request for review and modification of the IEP. This can also be requested by the school system. The school system is required to attempt full implementation of the IEP, but there are no specified consequences for non-implementation. Parents have a right to seek a legal remedy to ensure compliance with the IEP. Anecdotal reports suggest that satisfaction with the IEP process and related services is highly variable, and depends on the level of cooperation provided by the school, the school system’s awareness of cognitive impairment in

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children with cancer, and resources available to provide the necessary interventions (Hoffman, 2002). Accessing special education services under IDEA can be a complex undertaking and some parents benefit from training to become an educational advocate for their child. Parental advocacy skills are critical, especially when families live far from their child’s treating facility or when parents need to overcome language and cultural-related difficulties in negotiating through complex school programs. The Department of Education supports parent centers in each state that provide training and information to help parents participate more effectively with professionals in meeting the education needs of children and youth with disabilities (www.taalliance.org/PTIs.htm, accessed March 15, 2003). Cancer centers may also provide parent training on the basics of special education services, how IEPs should be tailored to the specific needs of their child, how to appeal limitations on educational services offered to a child, and how to get help from organizations such as Candlelighters and local legal aid societies when services are designated but not provided, or provided in an ineffective manner. In some areas, ombudsman programs are available to provide an advocate to attend the IEP session with a parent to help negotiate for needed services. The Rehabilitation Act of 1973 Section 504 of the Rehabilitation Act of 1973 (re-authorized in 1998) “clarifies that no individual with a disability in the United States, shall, solely by reason of his or her disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance or any program or activity conducted by any Executive agency” (34 CFR, Sec. 104.4). Program or activity is defined as including “all operations of a local education agency, system of vocational education, or other school system.” This law applies also to colleges, universities, and private schools that receive federal funds. Under the provisions of this law, the definition of disability is broader: “a physical or mental impairment which substantially limits one or more of such person’s major life activities, such as learning; a record of such an impairment; or being regarded as having such an impairment.” The pertinent disability is not required to affect school performance adversely, and affected children do not have to come under the umbrella of special education to receive services. All persons at any age with diagnosed cancer are eligible to receive services under section 504. For affected children to receive services, a meeting similar to that for an IEP is conducted, and the needed services are written in the form of what is called a 504 plan. Unlike the IEP process however, a 504 plan is not monitored for compliance and does not have to be reviewed annually.

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In addition to stipulating conditions in academic settings, the Rehabilitation Act prohibits discrimination in employment practices; program accessibility; health, welfare, and other social services; nonacademic and extracurricular activities, including clubs; counseling services; transportation; and health services. Americans with Disabilities Act The ADA of 1990 provides a wider range of protection for all persons with disabilities. It prohibits discrimination against persons with disabilities and applies to all state and local agencies (not just those receiving federal funds), including private businesses. The ADA mandates that no individual with a disability shall be excluded from participation in public services or programs, such as higher education (42 U.S.C. 12132). The ADA not only prohibits discrimination against persons with disabilities, but requires that persons with disabilities receive “reasonable accommodation.” Its provisions apply to education, including non-sectarian private schools. It provides a second layer of protection, in addition to section 504, to ensure that public schools provide reasonable accommodations for students with disabilities. For example, a university may be required to provide a sign-language interpreter to a cancer survivor who has a hearing loss as a result of treatment. Additionally, the institution may not discriminate on the basis of the student’s disability. For example, a survivor who has respiratory fibrosis may not be required to complete the same physical educational standards required of other students. How effective are special education programs in addressing the needs of childhood cancer survivors? Unfortunately, there are no data to document specific outcomes (e.g., maintenance of developmental trajectories or improvement in functioning) for childhood cancer survivors who are provided with standardized access to special education services. Intervention studies are underway to assess programs designed to improve neurocognitive outcomes among survivors of childhood cancer (Armstrong, 2002). These interventions include improving the academic and social reintegration of children into the school setting; training parents to be more effective advocates for their child’s educational needs; and evaluating specific behavioral, medical, and compensatory interventions. SUMMARY AND CONCLUSIONS School-related disabilities among survivors of childhood cancer may include learning disabilities and functional limitations. There are no good estimates of how many childhood cancer survivors need accommodations at school, but among certain groups of survivors, the need appears to be

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very high. There is, for example, a three- to fourfold increase in the use of special education services among survivors of ALL, which likely translates into a third to a half of such survivors needing special education programs. Survivors at higher risk for neurocognitive late effects require monitoring for long-term neurocognitive deficits that may arise in the years following treatment. More needs to be learned of the educational needs of other groups of childhood cancer survivors and of the effectiveness of interventions designed to ameliorate the late effects of cancer and its treatment. Many cancer centers have school programs to ease the return of childhood cancer survivors to school following their treatment. Ideally, planning for school reentry begins at diagnosis and involves a school liaison to ensure that educational environments are supportive and can accommodate any late effects. The school liaison’s role may include following the educational progress of survivors through transitions to college, employment, or vocational programs. Support to teachers and classmates may also be provided following the death of a child from cancer. Three federal laws protect the educational and employment rights of individuals with disabilities: IDEA, the Rehabilitation Act of 1973, and the ADA. IDEA supports states to ensure the provision of free appropriate public education of children with disabilities. The Rehabilitation Act provides a broader set of protections for individuals of all ages with disabilities, to ensure that discrimination does not occur within any program in receipt of federal funds. The ADA prohibits discrimination of persons of disabilities in both public and privately supported agencies and business and requires that persons with disabilities receive reasonable accommodation. Of most direct relevance to children with cancer and their families is the IDEA and the protections afforded by the Rehabilitation Act of 1973. While legal protections appear to be comprehensive, required procedures are implemented and legal interpretations are made locally. Consequently, among parents, satisfaction with accommodations at schools varies, depending on the school’s level of cooperation, awareness of cognitive impairment in children with cancer, and resources available to provide the necessary interventions. REFERENCES Armstrong D. F. 2002. Cognitive Late Effects of Childhood Cancer and Treatment: Issues for Survivors (IOM commissioned background paper) (www.iom.edu/ncpb). Haupt R, Fears TR, Robison LL, Mills JL, Nicholson HS, Zeltzer LK, Meadows AT, Byrne J. 1994. Educational attainment in long-term survivors of childhood acute lymphoblastic leukemia. JAMA 272(18):1427-32. Hoffman B. 2002. Policy Recommendations to Address the Employment and Insurance Concerns of Cancer Survivors (IOM commissioned background paper) (www.iom.edu/ncpb).

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Leigh LD, Miles MA. 2002. Educational Issues for Children with Cancer. Pizzo PA, Poplack DG. Principles and Practice of Pediatric Oncology. 4th ed. Philadelphia: Lippicott Williams and Wilkins. Pp. 1463-76. Loman P, Vincent N. 2002. School Reintegration: Current Trends and Future Directions. Presentation at a meeting of the Children’s Oncology Group, St. Louis, MO (October 2002). Masera G, Jankovic M, Deasy-Spinetta P, Adamoli L, Ben Arush MW, Challinor J, Chesler M, Colegrove R, Van Dongen-Melman J, McDowell H, et al. 1995. SIOP Working Committee on Psychosocial Issues in Pediatric Oncology: guidelines for school/education. Med Pediatr Oncol 25(6):429-30. Root H, Deasy-Spinetta P, Fiduccia D, et al. 1993. Protection of Children’s Educational Rights. Deasy-Spinetta P, Irvin E, eds. Educating the Child With Cancer. Bethesda, MD: The Candlelighter’s Childhood Cancer Foundation. Tesauro GM, Rowland JH, Lustig C. 2002. Survivorship resources for post-treatment cancer survivors. Cancer Pract 10(6):277-83. U.S. Department of Education. 2001. Twenty-Third Annual Report to Congress on the Implementation of the Individuals with Disabilities Act. Washington, DC: U.S. Department of Education. Wenger BL, Kaye HS, La Plante MP. Disabilities Among Children. 1995. Disability Statistics Abstract No. 15. Washington, DC: U.S. Department of Education, National Institute on Disability and Rehabilitation Research.