NeuroRehabilitation An InterdllCiplinary Journal
ELSEVIER
NeuroRehabilitation 5 (1995) 49-56
Educational outcomes in children with disabilities: Linking hospitals and schools Janet E. Parmer*a, Dana Clippardb a Department of Physical Medicine
and Rehabilitation, University of Missouri School of Medicine, 501 Rusk Rehabilitation Center, One Hospital Drive, Columbia, MO 65212, USA b Communication Disorders Unit, Rusk Rehabilitation Center, Columbia, MO 65212, USA
Accepted 10 September 1994
Abstract Children with disabilities are at increased risk of poor educational outcomes. Although most participate regularly in educational programs, they are less likely to be functionally independent, socially integrated, psychologically adjusted, and engaged in productive activity following school completion. Improved collaboration between rehabilitation specialists and educators has the potential to prevent these secondary complications of disability. Professionals need to specify important outcome domains to track in both settings, consider using a prevention model to guide interventions, and increase awareness of common underlying beliefs about the need for inclusive environments and interdependence. Keywords: Educational outcomes; Childhood disabilities - - - - - - - - - - - - - - - - - - - - - - - - - - _ . _ - - _ . _ - - - - - - _..._ - - _ . _ - - - - - - -
1. Introduction Children with a wide range of disabilities, including those with congenital problems (e.g., spina bifida, cerebral palsy), serious injuries (e.g., traumatic brain injury, spinal cord injury, burns, amputations), and disabling illnesses or diseases (e.g., encephalopathies, muscular dystrophies), receive rehabilitation services in hospitals. These same
* Corresponding author.
children receive educational services at school, often for years compared with the weeks or months they may spend in rehabilitation [1]. Whether at school or in rehabilitation, children with disabilities face a variety of challenges due to physical impairments, brain dysfunction, and decreased health status. Despite a common interest in meeting the needs of children with disabilities, rehabilitation specialists and educators have traditionally worked in parallel without regular communication or mutually identified objectives. This lack of partnership
1053-8135/94/$09.50 © 1995 Elsevier Science Ireland Ltd. All rights reserved. SSDI 1053-8135(94)00104-3
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I.E. Farmer, D. Clippard / NeuroRehabilitation 5 (1995) 49-56
produces two major problems for the child with a disability. First, rehabilitation treatment may be less effective if educators are not involved. Without input from teachers, clinicians have an incomplete baseline of child functioning prior to admission. Important rehabilitation goals and effective intervention strategies may be missed. Furthermore, when there is little school involvement during rehabilitation, children and their families may be cut off from much needed peer and teacher support. This may increase the child's level of distress and impede progress in therapies. Second, limited contact between hospital and school professionals often disrupts the child's transition back to school. Educators may be unaware of the impact of some childhood disabilities on school performance and uncertain of effective approaches to treatment [2]. Therefore, they may require considerable preparation to meet these children's needs. Even the best recommendations of rehabilitation specialists are likely to lose their impact if they are not communicated adequately to teachers or if they are a poor fit with educators' needs. For instance, clinicians have been known to provide written reports at the end of treatment that are too technical or incomplete, and they have made recommendations that are naive in relation to available school resources [2,3]. Increased contact during rehabilitation can smooth the transition from hospital to school. It also allows therapists and teachers to build a working relationship that contributes to effective long-term educational planning and school success. For example, rehabilitation specialists are often more familiar with communitybased programs than educators and can help identify long-range options for students with disabilities (e.g., independent living programs, state vocational services) [3]. Establishing a stronger link between hospital and school professionals is an essential step toward improving educational and functional outcomes. To help forge such a link, this paper provides an overview of the educational outcomes of children with disabilities and suggests ways that rehabilitation specialists and educators may work more collaboratively to enhance outcomes.
2. Defining educational outcomes The systematic measurement of outcomes is a relatively new endeavor for both rehabilitation and educational professionals. Ysseldyke et al. [4] defined educational outcomes as the result or product of recurring interactions between children and their learning experiences. They reported that educators and child specialists have typically evaluated results such as academic achievement, dropout rate, attitudes and aspirations, post-graduation status (employment, higher education), and life adjustment. With funding provided to the National Center on Educational Outcomes, Y sseldyke and Thurlow [5] developed a model for evaluating outcomes for students with disabilities. They proposed the following domains as priorities for assessment: presence and participation in educational programs; physical health; responsibility and independence; contribution and citizenship; academic and functional literacy; personal and social adjustment; individual, family and community satisfaction; and child and family use of accommodations/adaptations that facilitate other outcomes. Each outcome domain can be assessed using measurable indicators for children of different ages. This approach has the potential to inform professionals about the impact of both rehabilitative and educational programs. Because the categories are so new, indicators have not yet been assessed in all domains. However, there is outcome information available for youth with disabilities in several areas. 2.1. Presence and participation Before the late 1970s, parents had few options for obtaining educational services for children with disabilities. Over the past 20 years, federal legislation has dramatically changed the way that educators meet the needs of children with disabilities [6]. In 1975, the landmark Education for All Handicapped Children Act (ERA; PL. 94-142) mandated that all school-aged children receive a free and appropriate public education in the least restrictive environment. Under this law, the federal government required special education and
J.E. Fanner, D. Clippard / NeuroRehabilitation 5 (1995) 49-56
related services (e.g., physical and occupational therapy, speech/language therapy, counseling) for the following categories of childhood disabilities: mental retardation, hearing and visual impairments, orthopedic impairments, speech/language disorders, serious emotional disturbance, specific learning disabilities, multiple disabilities and other health-related impairments such as childhood cancer or stroke. PL. 94-142 also specified the need for an Individualized Education Program (IEP) for each student to document present levels of performance, annual goals, and necessary services. Several recent amendments and revisions have extended and refined PL. 94-142. In 1986, the passage of PL. 99-457 mandated special education services and early intervention programs for pre-school age children with disabilities. In 1990, PL. 101-476 reauthorized the ERA, changed the law's name to the Individuals with Disabilities Education Act (IDEA), added traumatic brain injury as a distinct special education category, and required transitional services to promote successful community entry for youth with disabilities. These federal mandates have allowed children with disabilities equal access to education [7]. Children receiving special education services not only participate, but they are also similar to nondisabled youth in dropout rate (23% vs. 25%, respectively) [8]. This level of success in the domain of presence and participation has shifted the focus to outcomes reflecting the quality of educational experiences, including level of independence, academic accomplishments, and adjustment to disability. 2. 2. Responsibility and independence Peraino [8] conducted an extensive review of the most recent studies examining post-graduation outcomes of youth who participated in special education services. Compared with a non-disabled group, graduates from such programs were clearly more dependent financially and functionally. They showed consistently lower employment rates than non-disabled youth showed (40% vs. 62% employed, respectively), less participation in postsecondary education (25% vs. 56%), and greater reliance on living with parents (66% vs.
51
50%). Youth with multiple disabilities, probably among the more severely affected youngsters, fared the worst with only 5% employed, 4% receiving postsecondary education and 3% living independently. Among graduates with physical disabilities, those with orthopedic impairments due to disease, trauma or congenital anomalies (e.g., spina bifida, cerebral palsy, brain injury) were more dependent than those with other health impairments that affected strength, vitality or alertness (e.g., leukemia, epilepsy, cardiac problems) [9]. Youth with orthopedic limitations were less likely to be employed than were those with other health problems (35% vs. 47% employed, respectively). Only a small number of all youth with physical disabilities were employed in full-time competitive work (2-8%). Approximately one-third of young people with physical disabilities participated in postsecondary training or education, a rate higher than youth with other disabilities (estimated between 15-25%), but well below non-disabled graduates (56%). Far fewer students with physical disabilities attended a 4-year college than did non-disabled students (9% vs. 28%). 2.3. Academic and functionalliteraGY
This outcome domain focuses on traditional academic accomplishments such as reading, writing and mathematics, as well as communicative competence, problem-solving skills and nonacademic learning (e.g., vocational skills) [5]. In this domain, the heterogeneity of children with disabilities is particularly apparent, both within and across disabilities. In general, children with any history of developmental or acquired neurological dysfunction are at greatest risk for poor academic achievement [10]. To illustrate, there is considerable documentation of the learning problems of children with traumatic brain injury (TBI) [11,12]. Early studies indicated that between 25% and 75% of children with TBI exhibited school failure or required special education services within 5 years after injury [12]. More recently, Jaffe et al. [13] studied the recovery of 94 children with mild, moderate and severe brain injuries. One year after initial postinjury assessment, they found a dose-re-
52
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sponse relationship between severity of injury and performance in six domains of neurocognitive functioning. That is, children with increasingly severe injuries showed correspondingly severe decrements in intelligence, adaptive problem solving, memory, academic performance, motor abilities, and psychomotor problem solving. Compared with a group of matched control subjects, moderately and severely injured children displayed persistent impairments on these outcome indicators not only at the I-year follow-up, but also after 3 years [14]. Jaffe et al. [13] also examined the cognitive outcomes of children with mild TBI, who did not differ from matched controls without brain injury. A separate analysis of these data raised the possibility that mild TBI may affect a range of neurobehavioral abilities weakly rather than markedly impair any single area of functioning [15]. This possibility is supported by a 23-year follow-up of a sample of children with mild brain injuries [16]. Approximately one-third of these individuals (31 %) reported subjective complaints of continuing physical, intellectual, or emotional problems due to the injury after 23 years. Such subjective complaints were associated with greater evidence of neurological damage reported at the time of injury and with lower intellectual abilities on measures obtained shortly after injury. Those persons with more subjective complaints also reported significantly more school failure and unemployment, than did those without subjective complaints. Although this study lacked a noninjured control group, it suggested that some children with mild brain injuries may be at risk for long-term disability. Children with spina bifida also show cognitive and academic difficulties relative to non-disabled children. Intellectual functioning ranges from average to significantly below average, with decreased performance associated with complications from hydrocephalus (e.g., multiple shunt revisions or shunt infections) and with greater impairment of sensory and motor functioning (i.e., higher level of lesion) [17]. Specific deficits in perceptual-motor skills, arithmetic skills, and language discourse and pragmatics have also been found [18,19]. As in the case of children with TBI,
more severe neurological dysfunction in a child with spina bifida leads to greater cognitive and academic impairment and a greater need for individualized educational programs [20]. Other factors besides severity of brain injury have been associated with poor academic outcomes in children with disabilities. For example, younger age of onset of brain insult has been related to poorer outcomes following traumatic brain injury [1], encephalopathies [21], and childhood leukemia [22]. In addition, level of cognitive and academic functioning prior to brain injury has been positively correlated with academic outcomes following brain dysfunction [21,23]. For instance, Rivara et al. [23] found lower pre-injury classroom grades and teacher ratings of school performance were strongly related to decreased performance on measures of academic achievement 1 year post-TBI. Family functioning contributed less to predictions of cognitive and academic outcomes than severity of injury or pre-injury abilities, most likely because of the overriding impact of these variables. 2. 4. Personal and social adjustment
Recent research indicates that youngsters with chronic health conditions are at higher risk of showing psychological symptoms such as depression, anxiety, and anger than non-disabled children [24,25]. However, children with disabilities do not inevitably develop clinically significant mental health problems. Instead, adaptation to disability is multiply determined and influenced by child factors such as developmental level, by characteristics of the specific disease or disorder, and by contextual factors such as family coping and support services [26]. For example, Ireys et al. [25] found that children's mental health is most threatened by the following specific disease factors: poor medical prognosis, restricted activity days, hearing and speech problems, and unpredictable illness symptoms. Interestingly, children with TBI do not consistently exhibit elevated rates of maladaptive behaviors (e.g., acting out, depression) on standard behavior rating scales relative to same age peers, although deficits in adaptive behavior (e.g., daily living skills, communication abilities) and social
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competence are well documented [23,27,28]. The lack of behavioral problems is somewhat surprising and may be due to insensitive measures, given earlier accounts of behavioral disturbances following TBI such as poor anger management, hyperactivity, conduct disorder and emotionallability [12]. When behavioral problems are reported, they are most strongly associated with the child's preinjury behavior and with preinjury family functioning rather than with severity of injury [13,23]. Similarly, a study of children with myelodysplasia [29] found that family functioning was a stronger determinant of behavioral adjustment than central nervous system dysfunction. Fewer internalizing behavior problems were reported among children with supportive families, and more externalizing behavior problems were identified in families with a high level of conflict and poor organization. These data from the domain of personal adjustment support the idea that many factors contribute to educational outcomes, not just the nature of the disability. 2.5. Summary Educational outcomes for children with disabilities have been measured in a variety of domains using either one-time follow-up studies (e.g., school completion, employment) or longitudinal follow-along studies that evaluate more immediate outcomes over time (e.g., academic achievement, cognitive functioning, adaptation). Initial findings indicate that children with disabilities are regularly participating in educational programs. Unfortunately, children with disabilities are more likely to show persistent impairments in cognition and academic achievement, with the severity of these problems dependent on the type and extent of neurological insult. They are also less likely to be functionally independent, socially integrated, and engaged in productive activity following school completion. Furthermore, although maladaptive behavior is not an inevitable consequence, disability increases the risk of poor personal and social adjustment. A growing body of research suggests that the outcomes of children with disabilities are multi-determined by characteristics of the child, family, school and community.
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3. Implications of outcome studies
Children with disabilities are clearly an at-risk group for poor educational outcomes. To enhance functioning in such children, rehabilitation and educational professionals must overcome communication and systems-based barriers [3] and improve collaborative efforts. One way to accomplish this task is by developing a common set of outcome domains across settings such as those proposed by Ysseldyke and Thurlow [5]. Specific goals and measured indicators of program efficacy may vary in each setting. For example, rehabilitation specialists are more likely to emphasize physical health and assistive devices, while educators will attend more to academic progress. However, for optimal outcomes, both groups must monitor progress in all domains and coordinate intervention efforts. In addition, hospital and school-based professionals can improve their collaborative efforts if they have a common conceptual framework for preventing secondary complications of disability (e.g., school failure, social isolation). Several researchers have described a prevention model based on evaluation of risk and protective factors that contribute to child outcomes [30,31]. Risk factors are those that increase the likelihood of poor outcomes, such as severe cognitive deficits, decreased social competence, or family disorganization. Protective factors limit the negative impact of child impairments and include the child's residual or developing skills, parental warmth and child management abilities, and well-trained teachers. To improve child outcomes, interventions must be planned to counteract known risk factors and enhance protective factors. This approach focuses on the individual needs of children with disabilities, emphasizes the importance of repeated assessments over time (i.e., to evaluate change associated with development/recovery processes, to monitor shifting environmental conditions), and encourages interventions directed toward multiple spheres of influence such as family, peers, teachers, and health care providers. For instance, when Rivara et al. [23] found increased risk of post-TBI maladaptive behavior in children who
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had premJury behavior problems or who came from poorly functioning families, they recommended comprehensive treatment with behavioral interventions at school, individual and family counseling, parent training in child behavior management, support groups, and case management services to help families access available social programs. A preventive approach also advocates early intervention to offset risk factors before they develop into actual dysfunction. Early contact between rehabilitation specialists and educators following acquired brain injury is one preventive approach that can serve many purposes. It allows educators to provide background information about preinjury child characteristics that can contribute to or protect against long-term risk. In addition, educators can help shape rehabilitation interventions by providing educational materials for therapeutic use. They can also ease the transition back to school by sharing information about the school environment such as length of day, classroom structure, and physical facilities. In turn, rehabilitation specialists can inform educators both about brain injury and about hospital and community resources for child treatment and family support. Hospital-based caregivers also can share specialized assessment techniques and intervention strategies, such as neuropsychological assessment, cognitive retraining, and methods of supporting social reentry [20,32]. For optimal collaboration and preventive impact, rehabilitation specialists must have an appreciation of special education processes, the continuum of educational services available for children of differing ages, and commonly used adaptive teaching strategies [33,34]. A key member of the pediatric rehabilitation team is often a special educator who can provide such expertise, act as coordinator of communication with the school, and ensure a match between the child's needs and available educational resources. Rehabilitation specialists must also initiate and model a team approach to program planning and treatment, including students, families, educators, health-related service providers and outside social agencies in this process. Thousand and Villa [35] found that such a team approach was well-re-
ceived by special educators, as it increased their sense of competence and job satisfaction. One final factor that can support collaborative efforts between educators and rehabilitation service providers is having a common set of values and attitudes toward children with disabilities. There is an increasing emphasis in both special education and rehabilitation on programs that value diversity, emphasize social connectiveness, and encourage self-determination by youth and their families. Many special educators are advocating greater inclusion of children with disabilities in general education classrooms with individualized programming and coordinated support systems [36]. Similar to the inclusive model, the interdependent model in rehabilitation focuses on the capacity of persons with disabilities to be successful in the community and hold valued work roles, if there are adequate supports for full participation [37]. Strong working relationships between schools and rehabilitation hospitals are an underlying assumption of these partnership models. Many times the major factor threatening the link between schools and rehabilitation is a lack of financial resources [3,37]. Collaboration takes time and must be funded. Yet managed health care insurance companies sharply limit the amount of reimbursement for indirect (non-therapy) rehabilitation services. In addition, insurers frequently will not reimburse for medically nonessential services such as those provided by the special educator on the rehabilitation team. School districts typically must ration financial resources for children with special needs. There are often disputes over whether schools or insurers are responsible for even basic services (e.g., physical therapy, occupational therapy) provided to children in transition from rehabilitation. One possible solution to the funding dilemma is to consider more efficient service delivery models aimed at linking hospitals and schools. For example, Lash and Scarpino [3] described a state funded project that developed a mobile team of multidisciplinary specialists in TBI. Traveling to communities throughout central Massachusetts, this team provided parents, educators and other professionals with formal training about TBI. In
I.E. Fanner, D. Clippard / NeuroRehabilitation 5 (1995) 49-56
addition, the team offered follow-up consultation using small working groups to advise, support and respond to specific questions regarding children with TBI. This model created a continuum of care for children across the health care and educational systems that was easily accessed and relatively cost-efficient, compared with the cost of duplicating this program at every hospital serving children with TBI. However, long-term funding resources for such innovative programs remain uncertain [3].
To convince funding sources of the efficacy of a coordinated approach to school and rehabilitation interventions, educational outcomes and their costs must be documented. For instance, Kagan and Rivara [38] reported that collaborative treatment of young children and their families improved program quality and scope, and was cost effective. Continued tracking of educational outcomes will guide the allocation of resources, promote effective interventions, and increase each child's opportunity to optimize functional independence and achieve social well-being. References [1] Begali V, ed. Head injury in children and adolescents: a resource and review for school and applied professionals, 2nd edn. Brandon VT: Clinical Psychology Publishing, 1992. [2] Telzrow CV. Management of academic and educational problems in traumatic brain injury. In Bigler ED, ed. Traumatic brain injury. Austin TX: Pro-Ed, 1990;251-272. [3] Lash M, Scarpino C. School reintegration for children with traumatic brain injuries. NeuroRehab 1993;3:13-25. [4] Ysseldyke JE, Thurlow ML, Bruininks RH. Expected educational outcomes for students with disabilities. Remedial Spec Educ 1992;13:19-30. [5] Ysseldyke JE, Thurlow ML, eds. Self-study guide to the development of educational outcomes and indicators: a companion piece to the six levels of educational outcomes and indicators for use by State departments of education, school districts, and local schools. Minneapolis MN: University of Minnesota, National Center on Educational Outcomes. (ERIC Document Reproduction Service #ED 363 059), 1993. [6] Wehman P, ed. Life beyond the classroom: transition strategies for young people with disabilities. Baltimore: Paul H Brookes Publishing Company, 1992. [7] National Council on Disability. The education of stu-
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dents with disabilities: where do we stand? Washington DC: National Council on Disability, 1989. Peraino JM. Post-21 follow-up studies: how do special education graduates fair? In: Wehman P, ed. Life beyond the classroom: transition strategies for young people with disabilities. Baltimore: Paul H Brookes Publishing Company. 1992;21-70. West M, Mast M, Cosel R et al. Applications for youth with orthopedic and other health impairments. In: Wehman P, ed. Life beyond the classroom: transition strategies for young people with disabilities. Baltimore: Paul H Brookes Publishing Company, 1992;373-393. Fletcher JM, Levin HS. Neurobehavioral effects of brain injury in children. In: Routh DK, ed. Handbook of pediatric psych. New York: Guilford Press, 1988;258-295. Farmer JE, Peterson L. Pediatric traumatic brain injury: promoting successful school re-entry. School Psychol Rev (in press). Hanson SL, Clippard D. Assessment of children with traumatic brain injury: planning for school re-entry. In: Hanson SL, Tucker DM, eds. Physical Medicine and Rehabilitation state of the art review: Neuropsychological assessment, Vol 6, No 3. Philadelphia, PA: Hanley and Belfus, 1992. Jaffe KM, Fay GC, Polissar NL et al. Severity of pediatric traumatic brain injury and neurobehavioral recovery at one year - a cohort study. Arch Physical Medicine and Rehabilitation 1993;74:587-595. Fay GC, Jaffe KM, Polissar NL et al. Outcome of pediatric traumatic brain injury at three years: a cohort study. Arch Physical Medicine and Rehabilitation 1994;75:733-741. Polissar NL, Fay GC, Jaffe KM et al. Mild pediatric traumatic brain injury: adjusting significance levels for multiple comparisons. Brain Injury 1994;8:249-246. Klonoff H, Clark C, Klonoff PS. Long-term outcome of head injuries: a 23 year follow up study of children with head injuries. J Neurol Neurosurg Psychiatry 1993;56:410-415. Hunt GM. Open Spina Bifida: Outcome for a complete cohort treated unselectively and followed into adulthood. Dev Med Child Neurol 1990;32:108-118. Dennis M, Barnes MA. Oral discourse after early-onset hydrocephalus: linguistic ambiguity, figurative language, speech acts, and script-based inferences. J Pediatr Psychol 1993;18:639-652. Wills KE, Holmbeck GN, Dillon K et al. Intelligence and achievement in children with myelomeningocele. J Pediatr Psychol 1990;15:161-176. Baron IS, Goldberger E. Neuropsychological disturbances of hydrocephalic children with implications for special education and rehabilitation. Neuropsychol Rehab 1993;3:389-410. Madge N, Diamond J, Miller D et ai, eds. The national childhood encephalopathy study: a 10 year follow-up. London: Mac Keith Press, 1993.
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[30]
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Stehbens JA, Kaleita TA, Noll RB et al. CNS prophylaxis of childhood leukemia: what are the long-term neurological, neuropsychological, and behavioral effects? Neuropsychol Rev 1991;2:147-177. Rivara JB, Jaffe KM, Polissar NL et al. Family functioning and children's academic performance and behavior problems in the year following traumatic brain injury. Arch Physical Medicine and Rehabilitation 1994;75:369-379. Bennett DS. Depression among children with chronic medical problems: a meta-analysis. J Pediatr Psycho I 1994;19:149-169. Ireys HT, Werthamer-Larsson LA, Kolodner. Mental health of young adults with chronic illness: the mediating effect of perceived impact. J Pediatr Psychol 1994;19:205-222. Lemanek KL. Editorial: Research on pediatric chronic illness: new directions and recurrent confounds. J Pediatr Psychol 1994;19:143-148. Fletcher JM, Ewing-Cobbs L, Miner ME. Behavioral changes after closed head injury in children. J Consult Clin Psychol 1990;58:93-98. Ylvisaker M. Communication outcome in children and adolescents with traumatic brain injury. Neuropsychol Rehab 1993;3:367-387. Thompson RJ, Kronenberger WG, Johnson DF et al. The role of central nervous system functioning and family functioning in behavioral problems of children with myelodysplasia. Dev Behav Ped 1989;10:242-248. Coie JD, Watt NF, West SG. The science of prevention:
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[34]
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A conceptual framework and some directions for a national research program. Am Psychol 1993; 48:1013-1022. Wallander JJ, Varni JW, Babani L et al. Family resources as resistance factors for psychological maladjustment in chronically ill and handicapped children. J Pediatr Psychol 1989;14:157-173. Savage RC, Wolcott GF, eds. Educational dimensions of acquired brain injury. Austin TX: Pro-Ed, 1994. Harrington D. Educational strategies. In: Rosenthal M, Griffith ER, Bond MR, Miller JD, eds. Rehab of the adult and child with traumatic brain injury, 2nd edn. Philadelphia: FA Davis Company, 1990;476-492. Stetson EG. Clinical child psychology and educational assessment. In: Walker CE, Roberts MC, eds. Handbook of clinical child psychology. 2nd edn. New York: John Wiley & Sons, 1992;101-131. Thousand J, Villa R. Strategies for educating learners with severe handicaps within their local home schools and communities. Focus Exceptional Child 1990;23:1-25. Morsink CV, Lenk LL. The delivery of special education programs and services. Remedial Spec Educ 1992;13:33-43. CondeIuci A. Brain injury rehabilitation: the need to bridge paradigms. Brain Injury 1992;6:543-551. Kagan S, Rivera M, eds. Collaborations in action: reshaping services for young children and their families. New Haven CT: Yale University, Bush Center in Child Development and Social Policy, 1990.
ELSEVIER
NeuroRehabilitation 5 (1995) 49-56
Educational outcomes in children with disabilities: Linking hospitals and schools Janet E. Parmer*a, Dana Clippardb a Department of Physical Medicine
and Rehabilitation, University of Missouri School of Medicine, 501 Rusk Rehabilitation Center, One Hospital Drive, Columbia, MO 65212, USA b Communication Disorders Unit, Rusk Rehabilitation Center, Columbia, MO 65212, USA
Accepted 10 September 1994
Abstract Children with disabilities are at increased risk of poor educational outcomes. Although most participate regularly in educational programs, they are less likely to be functionally independent, socially integrated, psychologically adjusted, and engaged in productive activity following school completion. Improved collaboration between rehabilitation specialists and educators has the potential to prevent these secondary complications of disability. Professionals need to specify important outcome domains to track in both settings, consider using a prevention model to guide interventions, and increase awareness of common underlying beliefs about the need for inclusive environments and interdependence. Keywords: Educational outcomes; Childhood disabilities - - - - - - - - - - - - - - - - - - - - - - - - - - _ . _ - - _ . _ - - - - - - _..._ - - _ . _ - - - - - - -
1. Introduction Children with a wide range of disabilities, including those with congenital problems (e.g., spina bifida, cerebral palsy), serious injuries (e.g., traumatic brain injury, spinal cord injury, burns, amputations), and disabling illnesses or diseases (e.g., encephalopathies, muscular dystrophies), receive rehabilitation services in hospitals. These same
* Corresponding author.
children receive educational services at school, often for years compared with the weeks or months they may spend in rehabilitation [1]. Whether at school or in rehabilitation, children with disabilities face a variety of challenges due to physical impairments, brain dysfunction, and decreased health status. Despite a common interest in meeting the needs of children with disabilities, rehabilitation specialists and educators have traditionally worked in parallel without regular communication or mutually identified objectives. This lack of partnership
1053-8135/94/$09.50 © 1995 Elsevier Science Ireland Ltd. All rights reserved. SSDI 1053-8135(94)00104-3
50
I.E. Farmer, D. Clippard / NeuroRehabilitation 5 (1995) 49-56
produces two major problems for the child with a disability. First, rehabilitation treatment may be less effective if educators are not involved. Without input from teachers, clinicians have an incomplete baseline of child functioning prior to admission. Important rehabilitation goals and effective intervention strategies may be missed. Furthermore, when there is little school involvement during rehabilitation, children and their families may be cut off from much needed peer and teacher support. This may increase the child's level of distress and impede progress in therapies. Second, limited contact between hospital and school professionals often disrupts the child's transition back to school. Educators may be unaware of the impact of some childhood disabilities on school performance and uncertain of effective approaches to treatment [2]. Therefore, they may require considerable preparation to meet these children's needs. Even the best recommendations of rehabilitation specialists are likely to lose their impact if they are not communicated adequately to teachers or if they are a poor fit with educators' needs. For instance, clinicians have been known to provide written reports at the end of treatment that are too technical or incomplete, and they have made recommendations that are naive in relation to available school resources [2,3]. Increased contact during rehabilitation can smooth the transition from hospital to school. It also allows therapists and teachers to build a working relationship that contributes to effective long-term educational planning and school success. For example, rehabilitation specialists are often more familiar with communitybased programs than educators and can help identify long-range options for students with disabilities (e.g., independent living programs, state vocational services) [3]. Establishing a stronger link between hospital and school professionals is an essential step toward improving educational and functional outcomes. To help forge such a link, this paper provides an overview of the educational outcomes of children with disabilities and suggests ways that rehabilitation specialists and educators may work more collaboratively to enhance outcomes.
2. Defining educational outcomes The systematic measurement of outcomes is a relatively new endeavor for both rehabilitation and educational professionals. Ysseldyke et al. [4] defined educational outcomes as the result or product of recurring interactions between children and their learning experiences. They reported that educators and child specialists have typically evaluated results such as academic achievement, dropout rate, attitudes and aspirations, post-graduation status (employment, higher education), and life adjustment. With funding provided to the National Center on Educational Outcomes, Y sseldyke and Thurlow [5] developed a model for evaluating outcomes for students with disabilities. They proposed the following domains as priorities for assessment: presence and participation in educational programs; physical health; responsibility and independence; contribution and citizenship; academic and functional literacy; personal and social adjustment; individual, family and community satisfaction; and child and family use of accommodations/adaptations that facilitate other outcomes. Each outcome domain can be assessed using measurable indicators for children of different ages. This approach has the potential to inform professionals about the impact of both rehabilitative and educational programs. Because the categories are so new, indicators have not yet been assessed in all domains. However, there is outcome information available for youth with disabilities in several areas. 2.1. Presence and participation Before the late 1970s, parents had few options for obtaining educational services for children with disabilities. Over the past 20 years, federal legislation has dramatically changed the way that educators meet the needs of children with disabilities [6]. In 1975, the landmark Education for All Handicapped Children Act (ERA; PL. 94-142) mandated that all school-aged children receive a free and appropriate public education in the least restrictive environment. Under this law, the federal government required special education and
J.E. Fanner, D. Clippard / NeuroRehabilitation 5 (1995) 49-56
related services (e.g., physical and occupational therapy, speech/language therapy, counseling) for the following categories of childhood disabilities: mental retardation, hearing and visual impairments, orthopedic impairments, speech/language disorders, serious emotional disturbance, specific learning disabilities, multiple disabilities and other health-related impairments such as childhood cancer or stroke. PL. 94-142 also specified the need for an Individualized Education Program (IEP) for each student to document present levels of performance, annual goals, and necessary services. Several recent amendments and revisions have extended and refined PL. 94-142. In 1986, the passage of PL. 99-457 mandated special education services and early intervention programs for pre-school age children with disabilities. In 1990, PL. 101-476 reauthorized the ERA, changed the law's name to the Individuals with Disabilities Education Act (IDEA), added traumatic brain injury as a distinct special education category, and required transitional services to promote successful community entry for youth with disabilities. These federal mandates have allowed children with disabilities equal access to education [7]. Children receiving special education services not only participate, but they are also similar to nondisabled youth in dropout rate (23% vs. 25%, respectively) [8]. This level of success in the domain of presence and participation has shifted the focus to outcomes reflecting the quality of educational experiences, including level of independence, academic accomplishments, and adjustment to disability. 2. 2. Responsibility and independence Peraino [8] conducted an extensive review of the most recent studies examining post-graduation outcomes of youth who participated in special education services. Compared with a non-disabled group, graduates from such programs were clearly more dependent financially and functionally. They showed consistently lower employment rates than non-disabled youth showed (40% vs. 62% employed, respectively), less participation in postsecondary education (25% vs. 56%), and greater reliance on living with parents (66% vs.
51
50%). Youth with multiple disabilities, probably among the more severely affected youngsters, fared the worst with only 5% employed, 4% receiving postsecondary education and 3% living independently. Among graduates with physical disabilities, those with orthopedic impairments due to disease, trauma or congenital anomalies (e.g., spina bifida, cerebral palsy, brain injury) were more dependent than those with other health impairments that affected strength, vitality or alertness (e.g., leukemia, epilepsy, cardiac problems) [9]. Youth with orthopedic limitations were less likely to be employed than were those with other health problems (35% vs. 47% employed, respectively). Only a small number of all youth with physical disabilities were employed in full-time competitive work (2-8%). Approximately one-third of young people with physical disabilities participated in postsecondary training or education, a rate higher than youth with other disabilities (estimated between 15-25%), but well below non-disabled graduates (56%). Far fewer students with physical disabilities attended a 4-year college than did non-disabled students (9% vs. 28%). 2.3. Academic and functionalliteraGY
This outcome domain focuses on traditional academic accomplishments such as reading, writing and mathematics, as well as communicative competence, problem-solving skills and nonacademic learning (e.g., vocational skills) [5]. In this domain, the heterogeneity of children with disabilities is particularly apparent, both within and across disabilities. In general, children with any history of developmental or acquired neurological dysfunction are at greatest risk for poor academic achievement [10]. To illustrate, there is considerable documentation of the learning problems of children with traumatic brain injury (TBI) [11,12]. Early studies indicated that between 25% and 75% of children with TBI exhibited school failure or required special education services within 5 years after injury [12]. More recently, Jaffe et al. [13] studied the recovery of 94 children with mild, moderate and severe brain injuries. One year after initial postinjury assessment, they found a dose-re-
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sponse relationship between severity of injury and performance in six domains of neurocognitive functioning. That is, children with increasingly severe injuries showed correspondingly severe decrements in intelligence, adaptive problem solving, memory, academic performance, motor abilities, and psychomotor problem solving. Compared with a group of matched control subjects, moderately and severely injured children displayed persistent impairments on these outcome indicators not only at the I-year follow-up, but also after 3 years [14]. Jaffe et al. [13] also examined the cognitive outcomes of children with mild TBI, who did not differ from matched controls without brain injury. A separate analysis of these data raised the possibility that mild TBI may affect a range of neurobehavioral abilities weakly rather than markedly impair any single area of functioning [15]. This possibility is supported by a 23-year follow-up of a sample of children with mild brain injuries [16]. Approximately one-third of these individuals (31 %) reported subjective complaints of continuing physical, intellectual, or emotional problems due to the injury after 23 years. Such subjective complaints were associated with greater evidence of neurological damage reported at the time of injury and with lower intellectual abilities on measures obtained shortly after injury. Those persons with more subjective complaints also reported significantly more school failure and unemployment, than did those without subjective complaints. Although this study lacked a noninjured control group, it suggested that some children with mild brain injuries may be at risk for long-term disability. Children with spina bifida also show cognitive and academic difficulties relative to non-disabled children. Intellectual functioning ranges from average to significantly below average, with decreased performance associated with complications from hydrocephalus (e.g., multiple shunt revisions or shunt infections) and with greater impairment of sensory and motor functioning (i.e., higher level of lesion) [17]. Specific deficits in perceptual-motor skills, arithmetic skills, and language discourse and pragmatics have also been found [18,19]. As in the case of children with TBI,
more severe neurological dysfunction in a child with spina bifida leads to greater cognitive and academic impairment and a greater need for individualized educational programs [20]. Other factors besides severity of brain injury have been associated with poor academic outcomes in children with disabilities. For example, younger age of onset of brain insult has been related to poorer outcomes following traumatic brain injury [1], encephalopathies [21], and childhood leukemia [22]. In addition, level of cognitive and academic functioning prior to brain injury has been positively correlated with academic outcomes following brain dysfunction [21,23]. For instance, Rivara et al. [23] found lower pre-injury classroom grades and teacher ratings of school performance were strongly related to decreased performance on measures of academic achievement 1 year post-TBI. Family functioning contributed less to predictions of cognitive and academic outcomes than severity of injury or pre-injury abilities, most likely because of the overriding impact of these variables. 2. 4. Personal and social adjustment
Recent research indicates that youngsters with chronic health conditions are at higher risk of showing psychological symptoms such as depression, anxiety, and anger than non-disabled children [24,25]. However, children with disabilities do not inevitably develop clinically significant mental health problems. Instead, adaptation to disability is multiply determined and influenced by child factors such as developmental level, by characteristics of the specific disease or disorder, and by contextual factors such as family coping and support services [26]. For example, Ireys et al. [25] found that children's mental health is most threatened by the following specific disease factors: poor medical prognosis, restricted activity days, hearing and speech problems, and unpredictable illness symptoms. Interestingly, children with TBI do not consistently exhibit elevated rates of maladaptive behaviors (e.g., acting out, depression) on standard behavior rating scales relative to same age peers, although deficits in adaptive behavior (e.g., daily living skills, communication abilities) and social
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competence are well documented [23,27,28]. The lack of behavioral problems is somewhat surprising and may be due to insensitive measures, given earlier accounts of behavioral disturbances following TBI such as poor anger management, hyperactivity, conduct disorder and emotionallability [12]. When behavioral problems are reported, they are most strongly associated with the child's preinjury behavior and with preinjury family functioning rather than with severity of injury [13,23]. Similarly, a study of children with myelodysplasia [29] found that family functioning was a stronger determinant of behavioral adjustment than central nervous system dysfunction. Fewer internalizing behavior problems were reported among children with supportive families, and more externalizing behavior problems were identified in families with a high level of conflict and poor organization. These data from the domain of personal adjustment support the idea that many factors contribute to educational outcomes, not just the nature of the disability. 2.5. Summary Educational outcomes for children with disabilities have been measured in a variety of domains using either one-time follow-up studies (e.g., school completion, employment) or longitudinal follow-along studies that evaluate more immediate outcomes over time (e.g., academic achievement, cognitive functioning, adaptation). Initial findings indicate that children with disabilities are regularly participating in educational programs. Unfortunately, children with disabilities are more likely to show persistent impairments in cognition and academic achievement, with the severity of these problems dependent on the type and extent of neurological insult. They are also less likely to be functionally independent, socially integrated, and engaged in productive activity following school completion. Furthermore, although maladaptive behavior is not an inevitable consequence, disability increases the risk of poor personal and social adjustment. A growing body of research suggests that the outcomes of children with disabilities are multi-determined by characteristics of the child, family, school and community.
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3. Implications of outcome studies
Children with disabilities are clearly an at-risk group for poor educational outcomes. To enhance functioning in such children, rehabilitation and educational professionals must overcome communication and systems-based barriers [3] and improve collaborative efforts. One way to accomplish this task is by developing a common set of outcome domains across settings such as those proposed by Ysseldyke and Thurlow [5]. Specific goals and measured indicators of program efficacy may vary in each setting. For example, rehabilitation specialists are more likely to emphasize physical health and assistive devices, while educators will attend more to academic progress. However, for optimal outcomes, both groups must monitor progress in all domains and coordinate intervention efforts. In addition, hospital and school-based professionals can improve their collaborative efforts if they have a common conceptual framework for preventing secondary complications of disability (e.g., school failure, social isolation). Several researchers have described a prevention model based on evaluation of risk and protective factors that contribute to child outcomes [30,31]. Risk factors are those that increase the likelihood of poor outcomes, such as severe cognitive deficits, decreased social competence, or family disorganization. Protective factors limit the negative impact of child impairments and include the child's residual or developing skills, parental warmth and child management abilities, and well-trained teachers. To improve child outcomes, interventions must be planned to counteract known risk factors and enhance protective factors. This approach focuses on the individual needs of children with disabilities, emphasizes the importance of repeated assessments over time (i.e., to evaluate change associated with development/recovery processes, to monitor shifting environmental conditions), and encourages interventions directed toward multiple spheres of influence such as family, peers, teachers, and health care providers. For instance, when Rivara et al. [23] found increased risk of post-TBI maladaptive behavior in children who
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had premJury behavior problems or who came from poorly functioning families, they recommended comprehensive treatment with behavioral interventions at school, individual and family counseling, parent training in child behavior management, support groups, and case management services to help families access available social programs. A preventive approach also advocates early intervention to offset risk factors before they develop into actual dysfunction. Early contact between rehabilitation specialists and educators following acquired brain injury is one preventive approach that can serve many purposes. It allows educators to provide background information about preinjury child characteristics that can contribute to or protect against long-term risk. In addition, educators can help shape rehabilitation interventions by providing educational materials for therapeutic use. They can also ease the transition back to school by sharing information about the school environment such as length of day, classroom structure, and physical facilities. In turn, rehabilitation specialists can inform educators both about brain injury and about hospital and community resources for child treatment and family support. Hospital-based caregivers also can share specialized assessment techniques and intervention strategies, such as neuropsychological assessment, cognitive retraining, and methods of supporting social reentry [20,32]. For optimal collaboration and preventive impact, rehabilitation specialists must have an appreciation of special education processes, the continuum of educational services available for children of differing ages, and commonly used adaptive teaching strategies [33,34]. A key member of the pediatric rehabilitation team is often a special educator who can provide such expertise, act as coordinator of communication with the school, and ensure a match between the child's needs and available educational resources. Rehabilitation specialists must also initiate and model a team approach to program planning and treatment, including students, families, educators, health-related service providers and outside social agencies in this process. Thousand and Villa [35] found that such a team approach was well-re-
ceived by special educators, as it increased their sense of competence and job satisfaction. One final factor that can support collaborative efforts between educators and rehabilitation service providers is having a common set of values and attitudes toward children with disabilities. There is an increasing emphasis in both special education and rehabilitation on programs that value diversity, emphasize social connectiveness, and encourage self-determination by youth and their families. Many special educators are advocating greater inclusion of children with disabilities in general education classrooms with individualized programming and coordinated support systems [36]. Similar to the inclusive model, the interdependent model in rehabilitation focuses on the capacity of persons with disabilities to be successful in the community and hold valued work roles, if there are adequate supports for full participation [37]. Strong working relationships between schools and rehabilitation hospitals are an underlying assumption of these partnership models. Many times the major factor threatening the link between schools and rehabilitation is a lack of financial resources [3,37]. Collaboration takes time and must be funded. Yet managed health care insurance companies sharply limit the amount of reimbursement for indirect (non-therapy) rehabilitation services. In addition, insurers frequently will not reimburse for medically nonessential services such as those provided by the special educator on the rehabilitation team. School districts typically must ration financial resources for children with special needs. There are often disputes over whether schools or insurers are responsible for even basic services (e.g., physical therapy, occupational therapy) provided to children in transition from rehabilitation. One possible solution to the funding dilemma is to consider more efficient service delivery models aimed at linking hospitals and schools. For example, Lash and Scarpino [3] described a state funded project that developed a mobile team of multidisciplinary specialists in TBI. Traveling to communities throughout central Massachusetts, this team provided parents, educators and other professionals with formal training about TBI. In
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addition, the team offered follow-up consultation using small working groups to advise, support and respond to specific questions regarding children with TBI. This model created a continuum of care for children across the health care and educational systems that was easily accessed and relatively cost-efficient, compared with the cost of duplicating this program at every hospital serving children with TBI. However, long-term funding resources for such innovative programs remain uncertain [3].
To convince funding sources of the efficacy of a coordinated approach to school and rehabilitation interventions, educational outcomes and their costs must be documented. For instance, Kagan and Rivara [38] reported that collaborative treatment of young children and their families improved program quality and scope, and was cost effective. Continued tracking of educational outcomes will guide the allocation of resources, promote effective interventions, and increase each child's opportunity to optimize functional independence and achieve social well-being. References [1] Begali V, ed. Head injury in children and adolescents: a resource and review for school and applied professionals, 2nd edn. Brandon VT: Clinical Psychology Publishing, 1992. [2] Telzrow CV. Management of academic and educational problems in traumatic brain injury. In Bigler ED, ed. Traumatic brain injury. Austin TX: Pro-Ed, 1990;251-272. [3] Lash M, Scarpino C. School reintegration for children with traumatic brain injuries. NeuroRehab 1993;3:13-25. [4] Ysseldyke JE, Thurlow ML, Bruininks RH. Expected educational outcomes for students with disabilities. Remedial Spec Educ 1992;13:19-30. [5] Ysseldyke JE, Thurlow ML, eds. Self-study guide to the development of educational outcomes and indicators: a companion piece to the six levels of educational outcomes and indicators for use by State departments of education, school districts, and local schools. Minneapolis MN: University of Minnesota, National Center on Educational Outcomes. (ERIC Document Reproduction Service #ED 363 059), 1993. [6] Wehman P, ed. Life beyond the classroom: transition strategies for young people with disabilities. Baltimore: Paul H Brookes Publishing Company, 1992. [7] National Council on Disability. The education of stu-
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