In addition to the health care services and programs discussed in Chapter 4, children with disabilities often need a wide array of additional supports and services from other sectors that influence a child’s social and human capital development outcomes. In many cases, these services interact with those described in Chapter 4 to influence health and functional outcomes, as well as social and human capital development, for children with disabilities. The combination of health and other services and supports, including education, employment, and social services, increases the likelihood of positive overall outcomes.
In this and the following chapter, the committee examines services and programs with evidence supporting their impact on the social and human capital development outcomes of children and youth with disabilities. In Chapter 3, these outcomes were identified as including education, daily living skills, communication and social skills, employment and earnings, community participation, self-determination, and independent living. As discussed in Chapter 2, a child’s needs for programs and services change over the life cycle. For example, in early childhood, the focus on both family and child-level supports is greater. As children move into elementary school, education services become a core set of supports. As youth near adulthood, they and family members must begin making decisions that impact long-term adult outcomes, and transition planning becomes particularly important during the movement from secondary school to the adult world.
Educational services and supports are intended to create supportive school and community contexts that enable the social and human capital
development of students with disabilities and promote capacity development in students with disabilities and their families by teaching skills—including academic, daily living, and social skills—and providing necessary supports for the expression of skills. As with health interventions, it is critically important that environmental modifications and capacity development interventions be undergirded by a focus on student and family involvement, individualization, building comprehensive systems of supports, and evidence-based interventions.
This chapter begins with a discussion of the educational landscape for children with disabilities, which is guided primarily by the Individuals with Disabilities Education Act (IDEA)1 and to a lesser, but still significant, extent by Section 504 of the Rehabilitation Act of 1973.2 This section also includes a discussion of the impacts of charter schools and school voucher programs on children with disabilities and their families. Next, the chapter presents the committee’s review of special education services as guaranteed by IDEA: inclusive education, specially designed instruction, supplementary aids and services, and related services and supports. Then, the chapter explores school-based transition services, also guaranteed under IDEA, which help prepare the child for transitioning to adulthood and support long-term goals including employment, community participation, and independent living. The chapter ends with the committee’s chapter-specific conclusions on special education programs and services for children with disabilities and their families. Throughout the chapter are examples of evidence-based and promising programs that support children with disabilities in accessing educational services and creating the building blocks for improved long-term functional outcomes. The program descriptions provide an overview of targeted populations, goals and desired outcomes, service methodology, supporting evidence, funding, and marketing and outreach where this information was available.
Required Educational Services
As discussed in Chapter 4, the delivery of health care services in the United States, especially for children with special health care needs and/or disabilities, is highly fragmented. Services may be delivered by a wide variety of professionals, including pediatricians and family practitioners, mental health practitioners, occupational and physical therapists, nurses,
1 Public Law 108-446.
2 45 C.F.R. Part 85.
and a wide variety of other specialty and subspecialty providers. Such services are provided in an array of settings, such as private practices, clinics, community health centers, community and children’s hospitals, and even the child’s home. Access to health care services is highly dependent on access to health insurance, which may be privately or publicly funded. And although provision of certain services is mandated for specific subsets of the population of children with disabilities (e.g., early and periodic screening, diagnostic, and treatment services for children on Medicaid), there is no legally mandated guarantee of health care services for all children with disabilities, nor is there centralized oversight of such services.
In contrast, all children (including those with disabilities) in the United States are guaranteed access to a free and appropriate public education (FAPE), with schools providing a centralized location for the delivery of educational and other services and supports for all children. Section 504 of the Rehabilitation Act of 1973 prohibits federally funded programs and activities from discriminating against individuals with disabilities while encouraging them to take steps to increase integration of people with disabilities into all areas of community life (see Appendix D). Each federal agency has created a unique set of Section 504 compliance regulations, with common regulations including providing reasonable accommodations for employees with disabilities, providing adaptive communications and technologies for people with sensory deficits, and making accommodations for physical disabilities in the construction of new facilities. In the education sector, Section 504 mandates that federally funded programs include elementary and secondary public school programs as well as postsecondary education (e.g., colleges, universities, and vocational and employment programs) (Lipkin and Okamoto, 2015). As a civil rights law, Section 504 guarantees the rights of children with disabilities to FAPE; however, it does not address or allocate funding for the protections it guarantees.
Passed in 1975, the Education for All Handicapped Children Act (EAHCA) required all public schools receiving federal funding to accept and provide an education to children with mental and physical disabilities and was the first legislation to mandate that public schools create individualized education programs (IEPs) for children with disabilities. EAHCA also required that public schools establish administrative procedures through which parents of children with disabilities could participate in the decision-making process and negotiate or dispute decisions made for their child through in-house procedures prior to judicial review.3 Introducing management, auditing, and mediation procedures, EAHCA increased direct involvement of parents in the educational planning process. Amendments in
3 Prior to EAHCA, parents were able to proceed directly to judicial review if they felt their child’s legal protections had been violated.
1990, which renamed EAHCA the Individuals with Disabilities Education Act (IDEA), and subsequent amendments in 1997 and 2004 expanded the reach of special education services and requirements for ensuring access to FAPE in the least restrictive environment (LRE) possible, and they continue to guide the provision of special education services across the United States.
IDEA guarantees access to education-related services for all children with a qualifying disability. Through the child find4 provision, IDEA mandates that all states
must have in effect policies and procedures to ensure that (i) all children with disabilities residing in the State, including children with disabilities who are homeless children or are wards of the State, and children with disabilities attending private schools, regardless of the severity of their disability, and who are in need of special education and related services, are identified, located, and evaluated; and (ii) a practical method is developed and implemented to determine which children are currently receiving needed special education and related services.
IDEA provides an initial entry point into the disability service system through early intervention services (birth through age 2), followed by school-based services beginning in pre-K or thereafter. These services continue until young adulthood, or as long as disability-related services are deemed necessary.5 Once a child has been identified, eligibility for special education must be reestablished every 3 years by qualified professionals.
Children between birth and age 3 years with an IDEA-qualifying disability (discussed in Chapter 2) are eligible for education-related services under IDEA Part C,6 which provides home-based intervention services tailored to the child’s and his or her family’s individual needs under an Individualized Family Service Plan (IFSP). As children and youth (aged 3–21) enter the school system, service requirements shift to IDEA Part B,7 which provides school-based intervention services tailored to the child’s individual needs under an IEP. Nationwide, the public education system provides disability support services for 6.6 million children aged 3–21, or approximately 13 percent of total enrollment in public schools in the United States (NCES, 2017). Starting with preschool services at age 3, special education is provided until the condition responsible for a child’s disability has been remediated sufficiently that the child is no longer deemed eligible
4 34 C.F.R. § 300.111.
5 Individuals with Disabilities Education Act (IDEA). See https://www.congress.gov/bill/105th-congress/house-bill/5 (accessed December 13, 2017).
6 34 C.F.R. § 300 Part 303.
7 34 C.F.R. § 300.
for special services under federal and state criteria, or until the child “ages out” of the educational system around her or his 22nd birthday.
IDEA requires that all children with disabilities have access to specially designed instruction, supplementary aids and services, and related services that are deemed necessary for the child to receive FAPE (each of these service domains is discussed below). Each needed service is specified in the IEP and is used to enable the child to (1) access and progress in the general education curriculum (including extracurricular and other school activities that are part of the curriculum) to the maximum extent possible, and (2) meet short-term individualized learning goals while taking developmentally appropriate steps toward achieving the long-term outcome of enhanced education, employment, and community participation outcomes in adulthood. Each IEP specifies current levels of performance, annual goals, special education and related services, level of integration with children without disabilities in the general education curriculum, and how progress will be measured in the general education curriculum and on annual goals. Each child’s IEP requires annual updating. As progress on IEP goals is reevaluated and as eligibility for special education is reassessed, the services and supports in the IEP may change. Commonly, a child’s annual IEP goals tend to focus on near-term outcomes related to the child’s development and educational progress, aligned with completing the lessons and learning appropriate school and social behaviors for a particular grade level.
It is important to note that students with disabilities may not be eligible for special education services under IDEA if their disabilities are determined not to create a need for specially designed instruction. Some students who may be eligible for Supplemental Security Income (SSI) or other federal disability programs but do not quality for special education may qualify for Section 504 plans that specify other types of accommodations required to access FAPE. For example, children with cancer, juvenile diabetes, and attention-deficit hyperactivity disorder (ADHD) often receive services under a Section 504 plan; however, children with these conditions may be covered by IDEA under the “other health impairment” classification if they are also determined to need specially designed instruction as a result of a disability.
Section 504 plans can be similar to IEPs in that they provide special accommodations, instructional and testing modifications, and special services that mirror those provided by an IEP. A key difference, however, is that a Section 504 plan is designed to ensure that the child has access to FAPE and school-related activities, while IEPs are intended to describe explicitly the special education services a child needs to receive FAPE. Additionally, the federal government does not provide any direct funding for Section 504 plans as it does for special education under IDEA, and schools are not required to follow the strict regulations and procedures for special education services and supports under Section 504 plans mandated by IDEA.
Nevertheless, Section 504 plans are beneficial to children with disabilities who do not meet IDEA’s educational need criteria.
It is important that educational planning for children with disabilities consider the individual strengths, goals, and preferences of each student when generating short- and long-term measurable goals, particularly in the context of transition services (school-based transition services are discussed later in this chapter; additional services related to transition outside of the school system are discussed in Chapter 6). One strategy commonly used to achieve this is person-centered planning, discussed in Box 5-1.
The Impact of Charter Schools and School Voucher Programs on Children with Disabilities
Forty-three states and the District of Columbia and Puerto Rico have a state statute specifically authorizing the establishment of charter schools (Aragon, 2015). In 2015, there were approximately 6,700 publicly funded charter schools in the United States (NCES, 2017). These charter schools enroll 2.7 million students, an increase from 2 to 5 percent of all public school students between 2004 and 2014 (NCES, 2017).
According to the Council of Parent Attorneys and Advocates (COPAA), “as recipients of federal funds under Section 504 of the Rehabilitation Act of 1973 (Section 504) and as state or governmental entities under Title II of the Americans with Disabilities Act (ADA), charter schools cannot discriminate against students with disabilities” (COPAA, 2017). According to the U.S. Government Accountability Office (GAO) (2012), however, “in most states, charter schools enrolled a lower percentage of students with disabilities when compared to traditional public schools.” In school year 2009–2010, approximately 11 percent of students enrolled in traditional public schools were students with disabilities, compared with about 8 percent of students enrolled in charter schools. The proportion of charter schools that enrolled high percentages of students with disabilities was lower overall than the proportion of traditional public schools (GAO, 2012). Additionally, it has been reported that charter schools underenroll students who have more significant disabilities and more resource-intensive educational needs (OCR, 2015). Charter schools serving students with disabilities are predominantly, but not exclusively, located in urban, under-performing districts (COPAA, 2017).
School voucher programs are, with the exception of Washington, DC, state-funded scholarships that pay for students to attend private school rather than public school or pay for other educational expenses for eligible students (Almazan and Marshall, 2016). Voucher programs vary by state, and “range from traditional ‘choice’ models that allow use of funds to enroll in the school that parents select, to education savings accounts, and tax
credit allowances” (Almazan and Marshall, 2016). Vouchers (along with education savings accounts [ESAs] and tax incentive programs) provide parents the option to send children to a private school using public funding to pay all or part of tuition. Currently, there are 27 voucher programs in place across 16 states and Washington, DC (NCLD, 2017). Fifteen of the
27 programs are designed for students with disabilities (GAO, 2017). Most voucher programs for students with disabilities allow students eligible for special education services under IDEA to receive a voucher for a sum of money that may or may not be equal to the state-funded portion of the cost of their education in a public school (Hensel, 2010).
Voucher programs present several problems for students with disabilities, including failure to cover the full cost of private schools, loss of civil rights protections, inadequate access to information, and lack of reporting (Rauschenberger, 2015). “In most cases, voucher amounts are not set at rates high enough to cover the full cost of the education at a private school” (Hensel, 2010). Because voucher programs vary by state, even if the amounts provided cover the cost of enrollment, many of the programs do not cover costs as necessary to enable full access and participation, such as transportation.
None of the 15 voucher programs aimed specifically at students with disabilities explicitly allow them to retain full IDEA rights (NCLD, 2017). In the majority of school voucher programs, when students use vouchers to attend a private school, they relinquish their rights under IDEA, including the right to an IEP and FAPE in the least restrictive environment, as well as their rights under Section 504 of the Rehabilitation Act and the ADA. However, parents may not know that by enrolling in a voucher program, they may be signing away their child’s civil rights protections (NCLD, 2017). Although the U.S. Department of Education recommends that state and local education agencies notify families of any changes in rights, IDEA does not provide the statutory authority to require such notifications (GAO, 2017). Consequently, GAO (2017) found that 4 of the 15 voucher programs for children with disabilities “provided no information about changes in rights under IDEA when a child with a disability moves from public to private school” (p. 25), while enrolling 73 percent of children participating in disability-related voucher programs. Another 5 programs were found to have provided inaccurate information on IDEA rights.
There is very little monitoring and oversight around the quality of education students receive at schools accepting vouchers (Rauschenberger, 2015). Generally, school voucher programs for students with disabilities do not require the schools to participate in standardized state assessments or any public reporting on results of student testing. Additionally, teachers in school voucher programs are not required to be qualified in accordance with state and federal laws. Parents have no recourse if a voucher is used or if a private school fails to meet a student’s needs—especially if the student has not yet been identified as having a qualifying disability, and the student will not be entitled to compensatory services (Almazan and Marshall, 2016).
There are a number of special education service domains mandated under IDEA. In this section, the committee describes and examines the evidence for inclusive education, specially designed instruction, supplementary aids and services, and related services and supports. It is important to note that within education, there are several interventions that are widely implemented and identify key outcomes for supports and services, but for which there have not yet been rigorous evaluations of efficacy or effectiveness. Implementation of these programs and interventions without having corroborating evidence results from several factors, including the difficulty of large-scale evaluation of programs mandated by law (which therefore cannot be withheld to form a group comparison), and the difficulty of longitudinal evaluation of outcomes as a function of multiple program implementations over the life span. Accordingly, the following sections highlight both promising practices and evidence-based practices that have been examined through randomized controlled trials. The programs mentioned should be considered exemplars, as there are multiple examples of evidence-based education practices that fall in each of these domains. Other research organizations, such as the What Works Clearinghouse,8 have engaged in comprehensive reviews of specific education practices in general and special education.
Since the 1990s, a convincing database has emerged with regard to the impact of promoting access to the general education curriculum on educational outcomes for students with disabilities (Ryndak et al., 2013; Soukup et al., 2007). Existing research has documented primarily the impact of inclusive education on academic, social/communication, and behavioral skills, suggesting that students with severe disabilities (1) exhibit growth in academic achievement and use of academic skills when participating in inclusive settings (Dessemontet et al., 2012; Kurth and Mastergeorge, 2012; Ryndak et al., 1999), and (2) show increased communication (Foreman et al., 2004), social (Carter and Hughes, 2005; Fisher and Meyer, 2002), and self-determination (Hughes et al., 2013) skills when placed in general education settings. Researchers have also suggested that students with severe disabilities have greater growth in social skills, largely as a result of access to social networks and peer models (Boyd et al., 2005), when they received specially designed instruction in the general education curriculum.
Furthermore, researchers have suggested that students without disabilities can realize socially valued outcomes as well as have access to resources and supports in inclusive classrooms that promote success for all students (Carter and Kennedy, 2006; Shogren et al., 2015b).
The principles for prevention and early intervention in promoting health outcomes that are outlined in Chapter 4 run parallel to strategies in the education sector for promoting positive education outcomes in all children. These principles entail promoting positive academic and social behaviors in all children while simultaneously working to identify children who show symptoms of disabilities that could hinder their academic progress, followed by more targeted interventions for those found to be at risk. Tiered support models have been demonstrated to effectively promote academic, behavioral, and social success in an inclusive environment; two such models are discussed in Box 5-2.
Specially Designed Instruction
Specially designed instruction provides students with different avenues for acquiring content knowledge, processing information, constructing meaning, or making sense of concepts. According to the IDEA legislation, “Specially designed instruction means adapting, as appropriate to the needs of an eligible child . . . the content, methodology, or delivery of instruction (i) to address the unique needs of the child that result from the child’s disability; and (ii) to ensure access of the child to the general curriculum, so that the child can meet the educational standards within the jurisdiction of the public agency that apply to all children” (§ 300.39(b)(3)). Specially designed instruction is supplemental to core instruction and individualized, based on a child’s unique learning needs, to help the child acquire specific skills he or she does not possess in order to progress successfully through the general curriculum (KSDE, 2017). It is generally provided by special education teachers or general education teachers in consultation with a qualified special education teacher, often with assistance from others, such as trained special education aides, therapy assistants, and paraprofessionals (KSDE, 2017; NCDPI, 2016).
Because of the emphasis on individualized instruction, much of the empirical research on the evidence base for specially designed instruction has employed single-subject designs (Horner et al., 2005; Spooner et al., 2012; Wong et al., 2015). In single-subject design research, certain specially designed instruction practices have been identified that are highly effective with specific disability groups, such as children who have autism spectrum disorder or severe developmental disabilities (Wong et al., 2015). In general, high-quality and large-scale evaluation of the evidence base for specially
designed instruction has focused primarily on social skill building (e.g., for children with autism spectrum disorder) (Wong et al., 2015).
As mentioned, policy and research suggest that specially designed instruction should be provided in the least restrictive environment. This principle emphasizes that specially designed instruction should be delivered in environments best suited to access the general education curriculum and meet the student’s unique learning needs, with the presumption of placement in the general education classroom with appropriate supplementary aids and services (discussed below). At the national level, nearly 63 percent of children receiving special education and related services spend at least 80 percent of their school day inside the regular classroom (ED, 2016), although this figure overshadows considerable variation.
It is important to note that specially designed instruction does not have to be delivered exclusively by teachers or other professionals, but can also involve strategies that engage the child’s peers in supporting her or his educational needs. Peer support is a strategy that involves placing students in pairs or in small groups to participate in learning activities that support academic instruction and social skills (Riester-Wood, 2015). As discussed above, promotion of inclusive education and community environments has been linked to growth in academic achievement and the development of positive behavioral, social, communication, and self-determination skills. The provision of peer supports for children with disabilities both inside and outside of the classroom helps support the inclusion of people with disabilities across the life span. Moreover, some types of peer supports, particularly those involving friendship building, do not require additional staff or extra funding (Riester-Wood, 2015).
An education-based example of peer supports is Peer-Assisted Learning Strategies (PALS)—a highly effective intervention approach with a substantial evidence base (Fuchs et al., 1997, 1999). Broadly, the PALS approach involves recruiting typically developing peers to augment class instruction, essentially serving as peer tutors supporting the learning of the children with disabilities. The peer-assisted learning intervention has been implemented in a number of states, across multiple grade levels, and across diverse socioeconomic status and racial groups and tested on a variety of subjects, such as reading and math9 (McMaster et al., 2006). In addition to producing reliable gains in the students with disabilities, there is evidence that serving as a peer tutor to children with disabilities improves knowledge and skills in the typically developing students. Furthermore, evidence suggests that students who have emotional or behavioral disorders can serve successfully as both tutors and recipients of tutoring under this model (Spencer, 2006).
Many key elements that are considered when implementing the PALS intervention mirror themes of successful disability interventions: Lessons are individualized and developmentally appropriate for the student’s skill level, goals are mastered before moving onto the next level, and learning is scaffolded so that each new unit builds upon a solid foundation. For example, a PALS exercise will provide instruction on key math concepts until
the tutee demonstrates automatic knowledge of the instructions. Although much of the evidence base focuses primarily on reading and math skill acquisition, efforts have been made to branch the PALS model into social studies and other subjects (McMaster et al., 2006), and to extend the upper and lower bounds of the age ranges receiving the intervention (Fuchs et al., 2001).
Enlisting peers to help youth with disabilities gain employment skills (ED, 2017), or children and youth gain social skills (Locke and Fuchs, 199510), has also been a popular form of intervention; however, more rigorous testing is needed in these domains to assess the efficacy of peer coaching outside of the classroom. Single-subject design studies have shown that placing students with disabilities next to a peer partner in the classroom increases the number of informal social interactions between the students beyond the end of the intervention (Carter et al., 2011).
Peer supports can also be delivered by individuals who have common interests or similar life experiences (SAMHSA, n.d.). For instance, substance abuse support groups rely on peer support to aid individual recovery.
Peer supports also promote a sense of belonging within the community and provide opportunities for friendships. As awareness surrounding such disorders as autism increases, more and more peer support clubs and organizations have been founded by students enrolled in elementary, middle, and high schools, as well as universities. Stated goals of these organizations include helping children and youth with disabilities increase their socialization and develop independence. Examples of peer support programs are provided in Box 5-3.
Supplementary Aids and Services
IDEA defines supplementary aids and services as “aids, services, and other supports that are provided in regular education classes or other education-related settings to enable children with disabilities to be educated
with nondisabled children” to enhance school and postschool outcomes. As such, supplementary aids and services are meant to address students’ individualized learning needs and support students with disabilities across environments in accessing curricular content, interacting with their peers, and developing the skills necessary to achieve postschool outcomes. Each student will have differing needs for supplementary aids and services based on her or his individualized learning needs. Researchers have linked the provision of supplementary aids and services to increased student goal attainment, academic achievement, and access to the general education curriculum (Lee et al., 2009; Soukup et al., 2007).
Supplementary aids and services encompass anything a child needs to be educated alongside peers without disabilities to the maximum extent appropriate, including adapted equipment (e.g., ergonomic scissors or writing utensils), assistive technology (e.g., word processors, augmentative/alternative communication devices), training for staff or parents, a one-on-one aide, accommodations (e.g., additional time for movement between classes, preferred classroom seating), or adapted materials (e.g., electronic books) (MSDE, 2011). States bear responsibility for producing data that prove a student cannot be successful in a general education classroom while receiving supplementary aids and services before removing the student to a separate, nonintegrated classroom (Yell, 1995). According to the 26th Annual Report to Congress on the Implementation of IDEA, 85 percent of elementary or middle school children with disabilities in regular education language arts classes had some type of support indicated on their IEP or Section 504 plan. The most common aids, services, accommodations, and modifications included extra time to complete assignments or take tests (61.9 percent), shorter assignments or test questions (36.8 percent), having tests read aloud (35.3 percent), and slower-paced instruction (30.4 percent) (Blackorby et al., 2004, p. 3).
Certain supplementary aids, services, modifications, and accommodations for ensuring that a child is educated in the regular classroom have been shown to improve performance at grade level for students with disabilities. Soukup and colleagues (2007) found that the physical arrangement of children in relationship to one another in the classroom predicted access to the general education curriculum for students with intellectual disabilities. Specifically, when student seating was arranged in clusters or groups, the students with intellectual disabilities had more access to grade-level material than when seated in study carrels or isolated from the group.
Assistive technology devices and services can also be secured for a child who has an IEP as a necessary component of providing FAPE in the least restrictive environment. Assistive technology devices are “any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve the
functional capabilities of children with disabilities.”11 This includes a broad array of devices, such as wheelchairs, pencil grips, adapted keyboards for visually impaired students, electronic note takers, and augmentative communication devices. Assistive technology can be used to support students to maximize their strengths and communicate and participate successfully in the general education classroom and school-sponsored extracurricular activities. Schools should provide assistive technology in the home if required to complete assignments or otherwise receive FAPE (Reynolds et al., 2015). Technological devices that have been surgically implanted (e.g., cochlear implants) are not considered to be assistive technology devices that the school is required to provide for children.
Assistive technology services assist a child with a disability in the selection, acquisition, and use of an assistive technology device.12 Such services include making necessary modifications to the device; training the child, families, or teachers on how to use the device; and providing for necessary maintenance or repair of the device (DRW, 2015).13 Some school districts employ assistive technology services (ATS) staff members to collaborate with IEP teams to ensure that all children who need assistive technology devices are able to access them, and that all relevant parties are trained on how to use and maintain them. For example, Fairfax County Public Schools in Virginia assigns one assistive technology resource teacher to provide assistive technology training and support to 8–10 public schools within the school district and engages staff in professional development training by hosting teacher programs such as Technology Outreach and Program Support (FCPS, n.d.). For maximal effectiveness, assistive devices should be as personalized as much possible to meet each child’s individual needs and to promote access to and participation in an inclusive environment. Regarding postsecondary outcomes, more research is needed to understand how the specifications for and use of assistive devices support inclusion in society and integrated work environments for individuals with disabilities (NASEM, 2017).
Related Services and Supports
In the school context, the integration of educational supports and related services, including services described in Chapter 4, can be important. IDEA guarantees an array of related services for children eligible for special education services when necessary to ensure FAPE. These services include transportation, speech-language pathology and audiology
11 20 U.S.C. 1401(1); 34 C.F.R. § 300.105.
12 20 U.S.C. 1401(2).
services, interpreting services, psychological services, physical and occupational therapy, recreation (including therapeutic recreation), social work services, school nurse services, counseling services (including rehabilitation counseling), orientation and mobility services, and medical services (for diagnostic and evaluation purposes only).14 Two of these related services—psychological services and physical and occupational therapy—are discussed in Chapter 4. Herein, the committee discusses three additional related services that are critical to the success of young people with disabilities: speech-language pathology and audiology services, school nurse services, and school social work services. The committee also recognizes that although the public school system is not formally identified as a medical center for mental health services or as a point of entry into the mental health system, schools often serve as the primary source for mental, emotional, and behavioral supports and services for many children with disabilities; therefore, school-based mental health services and interventions are also briefly discussed.
Speech-Language Pathology and Audiology Services
One of the most common disability typologies in childhood is speech and language disorders (Prelock et al., 2008). Not only are speech and language disorders primary eligibility qualifiers for special education services and a potential qualifier for the SSI benefits program, but they also commonly co-occur with other neurodevelopmental, learning, and intellectual disabilities. Because of this, many of the services provided by speech-language pathologists are delivered through the school system. Evidence suggests that directly targeting speech and language goals can be highly effective for improving communication and social skills in children with developmental or intellectual disabilities (Schalick et al., 2012). For example, a recent speech intervention study examining school-aged children with Down syndrome found that treating speech comprehensibility at the word level greatly improved clarity of speech compared with teaching isolated word sounds (Yoder et al., 2016).
As the recent National Academies report on speech and language disorders in the SSI population indicates, there is an extensive evidence base supporting direct instruction for speech and language (NASEM, 2016). However, there is a continued need for longitudinal studies that trace the developmental impact of these services from early intervention and preschool, to the K–12 system, and beyond postsecondary transitioning to adult vocation and community living. Early interventions may focus on developing first words and initial social engagement, expanding to focus
14 Many of these services are also paid for by Medicaid.
on more effective communication, conversational skills, and vocabulary building during the preschool years. Many students with speech and language problems are likely to have reading and writing difficulties, and often experience difficulty in academics generally because of their difficulty with language comprehension. In elementary school, speech-language therapy services are often focused on the language of the classroom, including knowledge of metaphors and formal rules of sentence structure/syntax, as well as reading and writing. For many students, such as those with autism spectrum disorders, school-age language services often focus on social skills and the nuances of conversation as well. Middle school and high school services are often focused on the interface between language and literacy and the vocabulary and language skills needed for employment and for community participation.
School Nurse Services
School nurses provide services to all children, and have been shown to serve an important role in providing health care services to children in poverty, who have been found to seek school nursing services more than their peers (Fleming, 2011). Services provided include a variety of screening services (e.g., vision and hearing), assessment, diagnosis, counseling, and related services (NASISP, 2016), and school nurses assume many roles to meet student needs, including clinician, care coordinator, liaison/collaborator, counselor, health educator, and advocate (Bergren et al., 2017; NASN, 2005).
As clinicians, school nurses may provide a wide variety of medical services, such as administration of oral, intramuscular, intravenous, and subcutaneous medications; catheterization; dialysis; glucose testing; and respiratory care (SMS, 2014). As care coordinators, they may provide referrals; help connect families with resources and services; plan for care in the school setting, including emergency preparedness; provide staff trainings; and assist with planning for transition (NASN, 2005). School nurses also often serve as liaisons, providing an important source of collaboration between the school and health communities, and as providers of health education, counseling, and advocacy.
School nurse coordination has been found to improve readiness to learn, classroom participation, and academic performance for students with special health needs (Bethell et al., 2012), and reduce the long-term impact of chronic health conditions on children (McClanahan and Weismuller, 2015). In a 4-year project looking at school nurse case management, 84 percent of students improved in one or more areas: attendance, behavior, academic performance, quality of life, and health compliance (Bonaiuto, 2007). Research has also found that school nursing services reduce absences
(Maughan, 2003; Shaw and McCabe, 2008; Weismuller et al., 2007); help students with disabilities better address teasing and bullying situations (Vessey and O’Neill, 2011); and are cost-effective, saving $2.20 in medical costs and time for parents and teachers for every $1.00 spent on school nursing services (Wang et al., 2014).
School Social Work Services
School social workers are trained mental health professionals who provide services to improve a child’s social, emotional, and academic outcomes. Most school social workers are based in public or private schools, although some are housed in social services agencies or residential treatment centers for children with emotional disturbances.15 School-based social work is considered a “related service” under IDEA.16 Related service in this context refers to “developmental, corrective, and other supportive services as are required to assist a child with a disability to benefit from special education . . . and includes counseling services. . . . The term also includes school health services, social work services in schools, and parent counseling and training”17 (Allen-Meares and Burman, 1999; Altshuler and Kopels, 2003). Social workers provide individualized services to help each child develop the skills he or she needs to succeed in school and later in life. For instance, among children who have intellectual or developmental disabilities, school social workers perform individual and family interventions to help with social and emotional functioning.
School social workers serve children across a variety of integrated settings, providing school-based services and reaching out to children and families at home or in the community (SSWAA, n.d.). Hence, they also play an important role in supporting the families of children with disabilities. After a disability diagnosis is established, school social workers are instrumental in connecting parents to community resources, offering emotional support to the parents, and serving as a point of communication between the school and the child’s family (Foster, 2015). Social workers aid families in ensuring continuity of services during moments of critical transition, including from early intervention services to preschool services and from preschool services to kindergarten services and beyond (Rosenkoetter et al., 2007). In the event of a crisis at school, the social worker reaches out to the family to ascertain their immediate wishes and provide them with follow-up support (Constable, 2009).
School social workers also serve as advocates for children to have
16 20 U.S.C. § 1401(22).
17 34 C.F.R. § 300.24.
access to any accommodations to which they may be entitled under the law. For example, social workers may advocate for testing in a child’s native language if he or she is still acquiring English, as codified under 34 C.F.R. §300.532(a)(1)(ii) (Altshuler and Kopels, 2003). School social workers help identify where other marginalized populations of children (e.g., children of migrant workers) may be found and evaluated for potential disabilities. Throughout the assessment, planning, and implementation processes, school social workers are valuable advocates for the child’s needs who can also articulate family preferences and contextualize cultural differences if the family is not capable of serving as primary advocates for their child.
School social workers are also natural points of contact for children who are in the foster care system, as these children have often experienced abuse or neglect and had unstable living situations. As a cohort, children in foster care are among the lowest-performing students. When foster children with disabilities are enrolled in a new school, their foster parents may know very little about the history of their disability or their special education needs. Moreover, foster parents may not know their rights and responsibilities for making educational decisions for foster children in their care. Under these circumstances, school social workers are indispensable, as they have been trained to understand the language used by child welfare caseworkers and the language of education legislation (Altshuler and Kopels, 2003). A school social worker may initiate team meetings to request relevant assessments for the child and create or amend an existing IEP for the child (Openshaw, 2008). School social workers can be expected to remain as participating members of the IEP team once it is formed. As foster children change schools and living circumstances, a school social worker may be the single continual point of contact for the child and a key advocate for ensuring that the child’s IEP is implemented throughout his or her academic career.
School-Based Mental Health Services
The Office of the Surgeon General’s (2001) definition of mental health as “the successful performance of mental function, resulting in productive activities, fulfilling relationships with other people, and the ability to adapt to change and to cope with adversity” has given the education sector a de facto leading role in children’s mental health care, with educational outcomes often being the basis for assessing “productive activities” (e.g., attendance rates) (Virginia Commission on Youth, 2010, p. 239). Moreover, schools may be the only mental health service providers that children and youth can access, as they entail no additional transportation or cost to the family, and youth may feel more comfortable referring themselves to school staff than navigating the private mental health care system.
In 2005, the Substance Abuse and Mental Health Services Administration (SAMHSA) released the first national baseline data on school-based mental health care services for children and youth—receiving mail-in responses from a representative sampling of 83,000 public elementary, middle, and high schools. The vast majority of schools indicated that at least one staff member’s primary responsibilities included providing mental health services to students, and that all students were eligible to receive mental health services, regardless of whether they had a documented disability. Responses further indicated that the most common school mental health providers were school counselors, followed by nurses, school psychologists, and
social workers. When applicable, school nurses estimated that they spent one-third of their time providing mental health services. The most common mental health services provided by school staff included mental health assessments, behavior management interventions, group or individual counseling (most often related to family issues), and referrals to community mental health specialists. While most schools reported willingness to refer students to community mental health services, only half of schools reported having a contract or other formal arrangement with local mental health service agencies to refer students in need of treatment (Foster et al., 2005). An example of a school-based mental health delivery model is provided in Box 5-4.
To prepare each child for successful long-term educational, employment, community participation, self-determination, and independent living outcomes once he or she exits the school system, it is important that school-based programs and services for children with disabilities focus specifically on preparing the child for transitioning to adulthood. Despite the fact that few studies of transition prior to 2010 involved classic research rigor or empirically validated interventions, they nevertheless have led to general agreement among researchers and practitioners on appropriate interventions that promise a favorable impact on transition outcomes. Simultaneously, there have been efforts to identify those factors that affect optimum postschool outcomes, especially postschool employment outcomes.
In 2009, the National Secondary Transition Technical Assistance Center (NSTTAC)18 conducted a two-part review of the literature on transition, focusing first on quality experimental studies (group and single-subject designs), then expanding the review to rigorous correlational research (Mazzoti et al., 2016; Test et al., 2009a,b). Updated annually,19 the review identifies effective practices and predictors of postschool outcomes for children with disabilities across three domains—education, employment, and independent living (Test et al., 2016). Based on an evaluation of the amount, type, and quality of the research conducted, the National Technical Assistance Center on Transition (NTACT) classifies effective practices and predictors as evidence-based, research-based, or promising.
As of November 2017, NTACT had identified 11 evidence-based practices, 47 research-based practices, and 76 promising practices; effective practices and related lesson plan starters by outcome area can be accessed via the NTACT website.20 NTACT has also identified 20 predictors of positive postschool outcomes, extracted from high-quality correlational research including students with disabilities (Mazzoti et al., 2016; Test et al., 2009a,b); predictors (and their operational definitions) by outcome area are presented in Table 5-1. Future research needs to determine the relative effectiveness of the strategies, experiences, and student behavior predictors by disability category, severity of disability, or environmental context.
In addition to the educational and other school-based services described above, IDEA guarantees the right to transition services—defined as a coordinated set of activities for students with disabilities that are based on the student’s individual strengths, preferences, and interests—to all eligible
18 Funded by the U.S. Department of Education.
19 Initially by NSTTAC and since 2015 by the National Technical Assistance Center on Transition (NTACT).
20 See https://transitionta.org/system/files/epmatrix/matrix_11_02_17.pdf?file=1&type=node&id=1338 (accessed April 9, 2018).
|Predictor Category (Operational Definition)||Outcomes|
|Career Awareness (learning about opportunities, education, and skills needed in various occupational pathways)||X||X|
|Community Experiences (activities outside of school, supported with in-class instruction)||X|
|Exit Exam Requirements (passing standardized state tests with specified proficiency levels)/High School Diploma Status (completing state requirements for diploma)||X|
|Goal Setting (participation in prevocational/vocational goal setting)||X||X|
|Inclusion in General Education (access to general education curriculum and engagement in classes with peers without disabilities)||X||X||X|
|Interagency Collaboration (clear, purposeful, and carefully designed process promoting cross-agency, program, and -disciplinary collaborative efforts leading to tangible transition outcomes)||X||X|
|Occupational Courses (individual courses that support career awareness, allow or enable students to explore various career pathways, and develop specific occupational skills and experiences)||X||X|
|Paid Employment (existing standard jobs in a company or organization or customized work assignments negotiated with the employer; must always feature competitive pay directly to the student by the employer)/Work Experience (places the student in an authentic workplace and may include work sampling, job shadowing, internships, apprenticeships, and paid employment)||X||X||X|
|Parent Expectations (parents expect child to attend postsecondary education, engage in postschool employment, or be self-supporting)||X||X||X|
|Parental Involvement (parents/families/guardian are active and knowledgeable participants in all aspects of transition planning)||X|
|Predictor Category (Operational Definition)||Outcomes|
|Program of Study (individualized set of courses, experiences, and curriculum designed to develop academic and functional achievement to support the attainment of desired postschool goals)||X|
|Self-Advocacy/Self-Determination (make choices, solve problems, set goals, evaluate options, take initiative to reach goals, and accept consequences of actions)||X||X|
|Self-Care/Independent Living (skills for management of personal self-care and daily independent living, including skills to interact with others, financial management skills, and health care/wellness self-management)||X||X||X|
|Social Skills (behaviors and attitudes that facilitate communication and cooperation, e.g., social conventions, social problem solving, body language, speaking, listening, responding, verbal and written communication)||X||X|
|Student Support (network of people who provide services and resources in multiple environments to prepare students to attain their annual transition and postsecondary goals)||X||X||X|
|Transition Program (prepares students to move from secondary settings to adult life, utilizing comprehensive transition planning and education that create individualized opportunities, services, and supports to help students achieve their postschool goals)||X||X|
|Travel Skills (ability to travel independently outside the home)||X|
|Vocational Education (courses that prepare students for a specific job or career at various levels)||X||X|
|Work Study (instruction/experiences to develop work attitudes and behaviors via mutually supportive and integrated academic and vocational instruction)||X|
|Predictor Category (Operational Definition)||Outcomes|
|Youth Autonomy/Decision Making (exhibit autonomy and decision making, e.g., plan activities, volunteer, make long-range plans, follow directions)||X||X|
youth with disabilities as part of the IEP process (see Box 5-5 for the full IDEA definition of transition services). IDEA mandates that transition planning begin no later than the IEP that will be in effect at the child’s 16th birthday; however, public feedback received by the Federal Partners in Transition Workgroup (FPT, 2015) indicated stakeholders believe that age 16 is too late to begin transition services. Currently, almost half of all states begin required transition education services earlier, typically by age 14 (Cameto, 2005).
The goal of activities undertaken as part of transition services is to facilitate the child’s movement from school to postschool activities, including postsecondary education, vocational education, integrated employment (including supported employment), continuing and adult education, and adult services, and to optimize long-term outcomes related to self-determination, employment and earnings, community participation, and independent living. Accordingly, schools are responsible for addressing multiple factors that impact social and human capital development over the life span. As described above, this begins with the requirement to provide FAPE to children with disabilities in the least restrictive environment while promoting access to the general education curriculum and addressing individualized learning needs (ED, 2010). As the student progresses through the education system, it is important that the IEP evolve to address other social, emotional, and behavioral skills, both to promote academic progress and to promote successful transition and postsecondary health and functioning outcomes over the life span (El Nokali et al., 2010). Unfortunately, discussions of long-term goals rarely begin in IEP meetings during elementary or middle school, despite there being benefits to long-term goal planning through carefully designed IEPs at an early age (Bullis et al., 2002).
IDEA mandates that the student’s IEP include “appropriate measurable postsecondary goals based on age-appropriate transition assessments related to training, education, employment, and where appropriate, independent
living skills.”21 While no definition of “measurable” can be found in IDEA, it is accepted that to make a goal measurable, objective criteria must exist. In general, this means postsecondary goals should include the timeframe for the completion, the level of proficiency, how progress will be measured, and how the student will demonstrate the skill or behavior at the accepted level of performance. Postsecondary goals that are too vague are not measurable.
To ensure that students with disabilities have a successful transition from school to postschool life, educators must make sure they have the necessary supports in place (Mazzotti et al., 2015). For a child whose eligibility under IDEA terminates because of graduating with a regular diploma
21 34 C.F.R. 300.320(b)(1).
or exceeding the age of eligibility for special education services under state law, “a local educational agency shall provide the child with a summary of the child’s academic achievement and functional performance, which shall include recommendations on how to assist the child in meeting the child’s postsecondary goals.”22 This one document, referred to as a Summary of Performance (SOP), contains all of the child’s relevant transition planning information.
The hope is that the summary will strengthen the likelihood that when the child leaves high school, she or he will have the relevant information about her or his academic achievement and functional performance, which could help improve postschool outcomes. The summary may include the accommodations, modifications, and supports that were effective in high school and may have utility in postsecondary settings. Legally, completion of the SOP should happen during the youth’s senior year just prior to exiting special services; however, Martin and colleagues (2007) recommend that this be a yearly occurrence as part of the student’s transition plan as a means of driving the plan and increasing the student’s and family’s awareness of the SOP process. Furthermore, Martin and colleagues (2007) found that allowing for the student’s active involvement and leadership during his or her SOP meeting through the student-directed SOP process increases active engagement in the process and opportunities to enhance self-determination skills associated with disability awareness, strengths and limitations, goal setting, and self-advocacy.
In addition to IDEA-mandated transition services, in-school youth with disabilities up to age 21 (or older if state laws permit continued enrollment) are also eligible for in-school employment services under the Workforce Innovation and Opportunity Act (WIOA) if they are low-income23 (WIOA is discussed in greater detail in Chapter 6). WIOA defines a “student with a disability” as a youth who is enrolled in school and receives transition services as part of his or her IEP. Youth programs focused on improving educational attainment include tutoring services, study skills training, alternative secondary school offerings, and dropout recovery services (Hoff, 2014).
Transitioning to Postsecondary Education
IDEA brought a significant change in perspectives pertaining to individuals with disabilities when it mandated that postsecondary education be
22 20 U.S.C. § 1414 (c)(5)(B)(ii).
23 Youth with a disability can be counted as a “family of one” for purposes of qualifying for Workforce Innovation and Opportunity Act (WIOA) youth services. Additionally, 5 percent of youth participants in any WIOA-sponsored program can be exempt from income limits (Hoff, 2014).
considered a goal for all students. These changed perceptions are reflected in Wagner and colleagues’ (2007) finding that 80 percent of students with disabilities consider postsecondary education as a primary goal according to the National Longitudinal Transition Study-2. Because many students with disabilities expect to access postsecondary education after high school graduation, it is important to ensure that they have appropriate coursework, supports, and accommodations to help them reach their goals (Shaw et al., 2009). When students attain the necessary transition skills, they will have improved postsecondary outcomes. For example, when individuals with and without disabilities complete postsecondary programs, their chances for gainful employment and financial independence greatly improve (Shaw and Dukes, 2013). Although IDEA requirements and services do not extend to postsecondary education, youth with disabilities still receive protections and accommodations under Section 504 of the Rehabilitation Act of 1973 and the ADA. Accordingly, postsecondary institutions need to obtain information to document a disability, determine the current impact of the disability, and justify the need for the accommodations (Harrington, 2013). The student’s SOP, described above, can be of assistance in this process.
Student Involvement in Transition Planning and Increasing Self-Determination
It is important that the transition process include a discussion of the activities and services necessary for students to attain their postsecondary goals. IDEA requires the child’s involvement in IEP meetings “if the purpose of the meeting will be the consideration of the postsecondary goals for the child and the transition services needed to assist the child in reaching those goals.”24Burnes and colleagues (2017) found that student involvement in the IEP process predicted postsecondary education and employment for students with disabilities (Burnes et al., 2017). Students are more likely to be active participants in their IEP meetings if they are encouraged to express their preferences, strengths, and limitations and discuss transition goals and progress toward those goals. Evidence-based lesson packages, such as the Self-Directed IEP (Martin et al., 1996), have been associated with increased active participation of students in their IEP meetings, from 3 percent to 13 percent of sessions (Martin et al., 2006), and increased self-determination skills (Arndt et al., 2006; Seong et al., 2015). Another study found that students with autism who were involved in transition planning were more likely to move on to postsecondary education (Chiang et al., 2012).
An important aspect of promoting the involvement of people with
24 34 C.F.R. § 300.320(b).
disabilities in decisions about their lives, across the life span, is enhancing skills and opportunities for self-determination. Self-determination has been broadly defined as acting as the causal agent in one’s life, specifically, acting with the intention of accomplishing a specific goal or creating change (Shogren et al., 2015a). Self-determination is increasingly understood to
be a key value undergirding services and supports for children, youth, and adults with disabilities, as well as a key outcome of effective services and supports across the life span (Shogren et al., 2015a). To aid children and youth with and without disabilities in acquiring the necessary self-determination skills for long-term success in such areas as employment and community participation, researchers have developed new models of instruction to embed instruction on self-determination skills into transition planning, as well as other education activities. One such model is described in Box 5-6.
IDEA requires that state and local education agencies actively seek out all children with a disability that might impact their ability to receive FAPE in an inclusive environment, and provide specially designed instruction, supplementary aides and services, and related services to all children determined to be eligible. Service needs and interventions are outlined in the child’s IEP, which is updated annually, and eligibility is reestablished every 3 years. Additionally, as part of the child’s IEP, schools are required provide transition services to youth no later than their 16th birthday.
Disability-related services provided by the public school system emphasize improving outcomes that are closely related to the child’s ability to access FAPE. For example, interventions geared toward treating a learning disability or speech or language impairment are more likely to be included in a child’s IEP. This can be problematic because “other health impairments” that inhibit a child’s ability to reach her or his educational potential, including mental and behavioral health disorders such as anxiety, depression, or ADHD, may not receive the same level of systematic, programmatic support from the education system. Moreover, eligibility for services in most categories is based on educational criteria rather than on medical diagnoses and other functional capacities.
Conceptually, the notion of providing access to educational, behavioral, and related services and supports through the school years via an IEP is appealing, and a large majority of students with disabilities in the United States are served in this system. On the other hand, this arrangement all too often lacks continuity across the life span given the focus on short-term outcomes without planning for long-term outcomes. Annual establishment of goals and objectives creates short-term accountability. However, this often leads to a lack of integration and strategic planning for building more complex knowledge and skills needed for community living and participation in postsecondary education and the workforce upon exiting the K–12 system. Furthermore, only half of students receiving special education services leave high school with a standard diploma, leaving much to be done to reduce
high unemployment rates among individuals with disabilities immediately following high school and later on in life (CPE, 2009).
Based on its review of educational and school-based programs for children with disabilities, the committee drew the following conclusions:
- 5.1. By virtue of the IDEA requirement that state and local education agencies identify, locate, and evaluate all children in need of educational support services because of a disability, the school system is often the first point of entry for children and families to connect with local disability services. Schools play an important role as a centralized location for the delivery of a variety of disability-related services (e.g., education; transition; and, when needed, to ensure access to FAPE in the least restrictive environment, health care services) that help improve the health and functioning of children with disabilities.
- 5.2. Strategies that promote inclusive educational and community environments, including tiered support models and peer support models, provide children with disabilities the opportunity to increase academic achievement; develop positive behavioral, social, communication, and self-determination skills; and achieve valued long-term outcomes, including employment and economic self-sufficiency.
- 5.3. Current practice, research, and evidence related to the design and delivery of educational instruction and support for children with disabilities focus largely on relatively short-term, year-to-year interventions.
- 5.4. Overemphasizing near-term goals for children with disabilities during IEP planning and reassessment can deemphasize the importance of supporting long-term goals and outcomes.
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