Before examining the effectiveness of programs and services to improve health and functioning outcomes for school-aged children with disabilities, the committee addressed a fundamental question: What do successful health and functioning outcomes look like?
Ultimately, optimal long-term outcomes for children with disabilities are the same as those desired for all children: that they be physically and mentally healthy; able to meet their daily needs; educated; engaged in and able to maintain satisfying, competitive, long-term employment; able to participate in their community at the level they desire; and able to act as the causal agent in their lives. However, it is important to note that many children with severe disabilities will never achieve optimal outcomes: their health may improve, but they may never be considered healthy; they may meet their daily needs or engage in competitive employment only with significant supports; and they may never fully act as the causal agent in their lives, even with a great deal of support. Therefore, positive health and functioning outcomes should not simply be equated with the absence of disability or elimination of the need for services and programs aimed at improving the lives of those with disabilities. Any gains in each of the areas outlined in this chapter should be considered positive progress, but some children with disabilities will need continued support to achieve and maintain those gains. For example, programs intended to mitigate the severity of disabilities or to help persons living with disabilities better access services and integrate into their communities (e.g., transportation programs) require long-term and continuous support to maintain positive outcomes.
The International Classification of Functioning, Disability and Health (ICF), developed by the World Health Organization (WHO) in 2001, helps describe the different types of health and functioning outcomes that may be considered. The ICF framework (depicted in Figure 2-3 in Chapter 2) is an integrated biopsychosocial model that includes both physical and behavioral aspects of health, and can be used to define and measure health outcomes that disability programs and services strive to optimize. The ICF framework moves beyond the traditional medical model approach of focusing specifically on body structures (anatomical parts of the body, such as organs, limbs, and their components), body functions (physiological functions of body systems, including mental and behavioral health functions), and their impairments (problems in body structure and function, such as a significant deviation or deficit). It recognizes that impairment does not equal disability; rather, disability results from the complex interplay between impairments and personal and environmental factors, and is best understood in terms of activities (execution of a task by an individual) and participation (involvement in life situations).
Similarly, the definition of health adopted for this report (see Box 1-1) views children’s health as comprising three distinct but related domains: health conditions, functioning, and health potential (NRC and IOM, 2004). The focus of this definition on health conditions (disorders or illnesses of body systems that are conventionally measured in health care settings) and functioning (the manifestation of health in an individual’s daily life) is similar to the ICF framework’s focus on body structures and functions, activities, and participation. However, this definition adds a third dimension by which outcomes should be measured and tracked: health potential, or “the development of assets and positive aspects of health, such as competence, capacity, and developmental potential” (NRC and IOM, 2004, p. 4).
Building on earlier work by WHO (2001) and the National Academies (NRC and IOM, 2004), this committee focused on outcomes for children with disabilities across two primary domains: health, and social and human capital development. Social and human capital development outcomes encompass seven outcome domains spanning the child’s life from school entry through the transition to adulthood: education, skills for daily living, communication and social skills, employment and earnings, community participation, self-determination, and independent living. Optimal outcomes in the health domain and the social and human capital domain and potential indicators for measuring progress are described in turn in the next two sections. The final section presents the committee’s chapter-specific conclusions on health and functioning outcomes for children with disabilities.
Optimizing health is an overarching goal of many programs and services for children with disabilities. For the purposes of this report, the term health outcomes refers to physical and mental health outcomes directly related to the child’s health conditions (disorders or illnesses of body systems that are conventionally measured in health care settings). Accordingly, outcomes in this domain focus primarily on those related to impairments of body structures and body functions, as described in the ICF, examples of which are provided in Table 3-1.
Successful long-term health outcomes are achieved when a child is able to reach her or his optimal health potential. Optimal outcomes in this domain include increased emotional and behavioral strengths, the ability to regulate emotional and cognitive states, the development of healthy eating habits, regular engagement in physical activity, and resilience. Ultimately, it is hoped that improved health outcomes will result in optimal health-related quality of life, enabling the best possible overall health, functioning, and well-being of the child. In that context, the better and more stable the physical and mental health of the child, the greater is the opportunity to maximize quality time and functioning outside of health care.
Near-term health outcomes prioritized for measurement and improvement among programs and services for children with disabilities often reflect results of ongoing, recurrent, comprehensive assessments of the child’s body structures and their functions. These assessments are intended to lead to the identification and treatment of chronic impairments (as well as the factors that influence them) that preclude children from experiencing optimal health and body functioning. Thus, near-term outcomes include achieving symptomatic control and improvement, minimizing the frequency and
|Body Structure||Examples of Body Function|
Brain, nervous system, eye, ear, and other related structures
Cognition, emotion, other mental functions, sensory functions, and pain
Voice, speech, and hearing systems
Cardiovascular and respiratory systems
Breathing and circulation
Digestive, metabolic, and endocrine systems
Hydrating, swallowing, nutritional intake
Genitourinary and reproductive systems
Hematologic and immunologic systems
Coagulation, fighting infections
Musculoskeletal, skin, and related systems
severity of acute illnesses,1 limiting secondary and tertiary impairments that may occur as complications of the original impairment, mitigating the accumulation of disability related to the impairment, improving gross and fine motor skills, meeting recommended weight and body mass, and improving psychological and cognitive functioning. In addition to outcomes related directly to body structures and their functions, outcomes in this domain are also often discussed in relation to their impact on daily life. For example, positive outcomes may be measured in terms of reducing the number and length of hospitalizations and reducing disability days, bed days, and limited activity days (NRC and IOM, 2004). Sample health outcome measures are listed in Box 3-1.
In adopting an expansive view of health, the committee recognizes that optimal health and functioning outcomes reach well beyond those directly
1 Examples of acute illnesses include infections (e.g., cellulitis, gastroenteritis, pneumonia), malfunction of medical technology devices (e.g., feeding and breathing tubes), and exacerbations of chronic impairments (e.g., suicidality in an adolescent with depression).
related to body structures, body functions, and their impairments to include what the National Academies report referenced earlier (NRC and IOM, 2004) terms functioning (the manifestation of health in an individual’s daily life) and the ICF refers to as activities and participation. The committee chose to examine such outcomes under the umbrella of social and human capital development, which, as noted earlier, encompasses seven primary outcome domains. These seven domains can be further delineated by the period of childhood during which they are targeted. During early and middle childhood, optimal outcomes are those that help provide children with the building blocks for long-term success. These include outcomes related to education, skills for daily living, and communication and social skills. As the child reaches adolescence, outcomes of interest include those that signal a successful transition to adulthood. These include outcomes related to self-determination, employment and earnings, community participation, and independent living. Optimal outcomes in each of these domains are discussed below.
The Building Blocks of Childhood: Education, Daily Living Skills, and Communication and Social Skills
A primary goal of childhood is to develop the skills required to be healthy and active, independent, and engaged in one’s community to the extent desired and to serve as the causal agent in one’s life (Heckhausen et al., 2010; NASEM, 2016). Optimal long-term outcomes related to this goal include the ability to meet one’s daily needs, graduation from high school, participation in postsecondary education or advanced job training, entry into the workforce or entrepreneurship, and participation in one’s community, as described in the transition planning mandates of the Individuals with Disabilities Education Act (IDEA)2 (the outcomes of entry into the workforce or entrepreneurship and community participation are described in subsequent sections). To help achieve these outcomes, a broad array of near-term goals are targeted, based on the individual needs of the child, in three primary domains identified above: education, skills for daily living, and communication and social skills (CPIR, 2017).
2 Under IDEA, schools provide transition services for youth with disabilities aged 16 and older to support their transition into postsecondary life broadly, and specifically around continued education and employment (see the detailed description of transition services in Chapter 6).
One of the primary goals of childhood is to attain the knowledge and abilities necessary for successful interactions with the world as the child ages and transitions into adulthood by receiving an appropriate education (Eccles, 1999). Education outcomes are those related to the attainment and application of knowledge and the development of academic skills and attributes that enable lifelong learning (Vera-Toscano et al., 2017). Outcomes in this domain are generally measured in a wide variety of ways. Optimal near-term outcomes include achieving academic proficiencies (e.g., reading, writing, math), acquiring cognitive skills (knowledge, comprehension, application, analysis, synthesis, and evaluation), maintaining an adequate grade point average, performing at or above grade level, advancing through grades on schedule, developing and demonstrating effective learning and study skills, and developing and demonstrating effective creative thinking and problem-solving skills (NCD, 2004; NEA, n.d.). As children reach adolescence, education outcomes begin to shift toward those related to the transition to adulthood (NCD, 2004). Optimal near-term outcomes at this life stage include developing technical skills (including computer and technology use); demonstrating decision-making skills; and identifying strengths, values, and career interests and goals (Levinson and Palmer, 2005).
Daily Living Skills
Daily living skills include all the tasks and activities individuals must complete to carry out self-maintenance and, as an adult, to maintain their health, care for their home, engage in their community, and care for others. Supporting children and adolescents in learning to care for themselves requires time and effort over many years, beginning with mastery of basic activities (e.g., eating, dressing, bathing, toileting) and progressing to more complex skills (e.g., helping with chores, caring for siblings, preparing meals). In addition to these discrete skills, daily living skills include the ability to organize a relevant set of activities into a routine and to problem-solve and adapt to unexpected circumstances (Kao et al., 2015). For example, the physical task of donning clothing is only one aspect of dressing, which also requires attention to the weather, consideration of which clothes are appropriate (e.g., work versus leisure), and the ability to change one’s plan as needed (e.g., if a rip is discovered in one of the clothing articles). These aspects of daily living need to be considered in evaluating outcomes in this domain, as many individuals with disabilities may master discrete skills but still need guidance and support in adapting these skills as needed as part of daily life (Browder et al., 2014; Hume, 2014).
Communication and Social Skills
Effective communication and social skills facilitate positive outcomes in the domains of education and daily living skills. The development of communication skills is in turn facilitated by the development of speech and language abilities during childhood. As children develop, targeted speech and language outcomes evolve from simple articulation and vocabulary building to understanding and using abstract language; reading nonverbal cues; and building cognitive skills, such as theory of mind, that facilitate interpersonal communication and understanding of the environment (Baron-Cohen, 1991; Wimmer and Perner, 1983).
During early childhood, optimal outcomes in this domain include the ability to speak clearly, process incoming speech streams, and develop strategies for expressing needs and wants. Additionally, the development of skills in reading and literacy, conversational turn taking, and nonliteral use of language (e.g., joking, sarcasm) are vital components of effective communication, academic success, and the ability to form social bonds.
In older children and youth, both cognitive and linguistic skills are required to facilitate speech perception and production, as well as social skill building. Children must learn to process speech in noisy environments; to understand non-native speakers; and to decode degraded speech signals in suboptimal listening environments, such as when talking on the phone. Cognitive skills related to linguistic performance include selective attention, or the ability to tune out one signal to focus on another; verbal working memory; and semantic predictability skills, or the ability to predict what a speaker is likely to say next based on the immediate context (Fallon et al., 2002; Gordon-Salant and Fitzgibbons, 1997).
Social skills can be defined as the cognitive functions and discrete verbal and nonverbal behaviors that are performed while interacting with others (Coleman and Lindsay, 1992). Optimal near-term outcomes in this domain include being able to communicate clearly and effectively with others, forming positive relationships, and learning to work productively with others. Optimal long-term outcomes include developing social competence, being able to build leadership skills, working productively with others (McHolm et al., 2005), forming positive relationships, and engaging in effective conflict resolution. Finally, achieving the near-term outcome of helping children with communication and social/behavioral disorders understand instructions in spoken, written, or nonverbal form will positively impact long-term academic and employment outcomes, such as the ability to work independently and as part of a team.
Box 3-2 lists sample outcome measures in the three domains discussed above.
The Transition to Adulthood: Self-Determination, Employment and Earnings, Community Participation, and Independent Living
During adolescence, children with disabilities reach a particularly salient period of life as they prepare to transition to adulthood. “Transition” as it relates to youth with disabilities has been defined as “a significant change or set of changes in a person’s life circumstances during a relatively limited time period rather than over the life span” (IOM, 2007, p. 100). While the exact ages at which the transition to adulthood begins and ends have not yet been defined by research, most definitions include ages 16–24.3
At the federal level, for example, transition-age youth (or “youth in transition”) is a designation that encompasses adolescents and young adults aged 16–24 who face special challenges in navigating the path to stable, satisfying independent living (Evans, 2017; Honeycutt et al., 2014; youth.gov, n.d.). During this period of great change, transition-age youth with disabilities must learn the skills and procedures necessary for independently navigating adult life after graduating or exiting from high school, including preparing for and pursuing postsecondary education or training and/or employment opportunities and effectively transitioning from pediatric to adult health care services.
Broad conceptual differences between child and adult disability services require transition-age youth to develop and hone new skill sets. For example, while IDEA guarantees access to educational services and accommodations for children with disabilities through completion of high school, the responsibility for exercising the right to seek and secure disability-related accommodations in college courses, as protected under Section 504 of the Rehabilitation Act of 1973, rests with the young adult student rather than the educational institution (OCR, 2015). Moreover, whereas access to special health care services, such as speech therapy, must be provided in public schools to children who qualify for IDEA services or have a Section 504 plan, and whose individualized education program (IEP) identifies this need (ED, 2010), young adults with disabilities must navigate insurance requirements and locate, coordinate, and arrange transportation to necessary health care services as they transition from secondary school (Got Transition?, 2017). Because of such challenges, those near-term outcomes during this period that prepare the adolescent to meet the challenges of young adulthood and achieve valued long-term outcomes are of great importance. The four primary outcome domains during this period identified above—self-determination, employment and earnings, community participation, and independent living—are discussed in turn below.
Self-determination is increasingly understood to be an important individual-level, long-term goal, particularly in the context of the transition from high school to the workplace or higher education. Self-determination has been broadly defined as acting as the causal agent in one’s life (Shogren et al., 2015). For people with disabilities, self-determination is not synonymous with independence or control, as programs and services can be a critical element of facilitating or enabling self-caused action.
Higher self-determination status4 of students with disabilities as they exit high school has been linked with achieving more positive employment, financial, and community living outcomes (Palmer et al., 2017; Shogren et al., 2015; Wehmeyer and Abery, 2013; Wehmeyer and Schwartz, 1997); expressing a preference for independent living (e.g., living outside the family home, having a savings or checking account); and obtaining job benefits, including vacation, sick leave, and health insurance (Wehmeyer and Palmer, 2003). Regarding postschool outcomes, Shogren and colleagues (2016) found that autonomy, a construct of self-determination, was linked to greater financial independence, employment, social relationships, housing, and positive postsecondary education outcomes among children with high-incidence disabilities (learning disabilities, emotional disturbances, speech or language impairments, and other health impairments), and to higher levels of independent living for people with intellectual and sensory disabilities. Psychological empowerment showed a strong relationship with employment wages and benefits across disability categories, and autonomy and self-realization contributed to independent living and enrollment in postsecondary education. Optimal near-term outcomes that can improve self-determination include autonomy, self-initiation, pathways thinking, self-regulation, self-direction, action-control beliefs, self-realization, and psychological empowerment (Shogren et al., 2017).
Employment and Earnings
One overarching goal for youth with disabilities is finding and maintaining satisfying, competitive long-term employment in an integrated environment.5 Competitive employment denotes a job typically found in the community, while an integrated environment is one in which individuals both with and without disabilities work.6 Near-term outcomes that help in achieving this goal include enrolling in and completing vocational programs, developing career interests through job counseling and internships, gaining understanding of work culture through work-based learning experience, developing individual plans for employment, and finding an employer that matches well with the individual (FPT, 2016). At the community level, long-term outcomes include economic growth benefits for local and regional economies that result from decreasing unemployment rates and increasing individuals’ purchasing power (NCSL, 2016). Other long-term outcomes
4 Measured through tools developed for this purpose, such as The Arc’s Self-Determination Scale (Wehmeyer and Kelchner, 1995) and the newly developed Self-Determination Inventory (Shogren et al., 2017).
5 Section 102(b)(4) of the Rehabilitation Act of 1973, as amended by the Workforce Innovation and Opportunity Act, and § 361.46(a)(1) of the implementing regulations.
6 34 C.F.R. §§ 361.5(c)(9)(ii) and 361.5(c)(32)(ii).
for the community include decreases in demand for adult disability services and social needs programs (EARN, 2013). Not all adults with disabilities will fully achieve independent living; enabling them to rely on adult disability services and vocational and professional/communication skills gained through education and job training programs can develop personal characteristics (e.g., confidence, competence) and improve employment-related social skills (e.g., establishing professional support networks or mentoring relationships) to promote successful outcomes. In addition, research has shown that working can have health benefits, while not working has negative health consequences related to social isolation and less financial security (Montgomery et al., 1999; Paul and Moser, 2009), a finding that also implies savings in health care costs.
Community participation can be viewed as one facet of the meaning of “full participation” under the Americans with Disabilities Act (ADA). The concept of community participation reflects access to and meaningful engagement in the community settings and activities available to community members without disabilities. It may also encompass participation in inclusive or specially designed activities for children and youth with disabilities, such as adaptive recreational programs or Special Olympics. Although participation as defined under the ADA reflects a rights perspective, the literature suggests that participation is also a desirable outcome from a health and functioning perspective. Throughout development, children learn important information and skills relevant to their culture through participation in community activities (Dunst et al., 2002; Vandell et al., 2005). Some of this participation is part of daily or weekly routines, such as grocery shopping or attending religious services with one’s family. Other forms of participation provide diverse opportunities to experience different types of relationships with other community members, be challenged by new activities or interactions, and discover and refine personal interests and preferences. The literature on positive youth development (Larson, 2000) documents how participation in nonschool activities, especially activities that offer opportunities for youth self-direction, may help develop important skills for adulthood, including negotiating collaborative efforts within a group, exercising communication skills, and attempting new challenges (Lerner et al., 2011; Maslow and Chung, 2013; Mueller et al., 2011). Thus, community participation during childhood and adolescence is an important near-term outcome that may also contribute significantly to the achievement of important long-term outcomes, including employment and independent living. Optimal near-term outcomes in this domain include positive engagement in school and nonschool extracurricular activities, community
activities (e.g., work, self- and home maintenance, recreation, and leisure activities), and personally meaningful activities.
As noted previously, community participation is also an important outcome for adults with disabilities, and thus should be considered a long-term outcome for children to achieve as well. In the field of psychiatric disabilities, Kaplan and colleagues (2012) stress the importance of enabling community participation because of the health risks associated with isolation or very restricted participation. These risks include depression, loneliness,
poorer health management, and greater numbers of adverse health events. Engagement in community activities, whether work, self- and home maintenance activities, or preferred recreation and leisure activities, can provide purpose, needed structure, and personal fulfillment.
Finally, the ability to live independently and productively, to plan and execute daily self-maintenance tasks (e.g., medication management, personal hygiene), meet basic needs (e.g., food, shelter, clothing), and seek out and acquire necessary assistance and supports is often7 an important goal for youth as they transition to adulthood. Accordingly, mastery of daily living skills (discussed above) in childhood is used as a near-term indicator of progression toward the capacity for independent living. Independent living outcomes involve not only managing practical concerns, but also achieving emotional well-being and ensuring that social needs are met. Optimal outcomes in this domain include being able to meet basic needs, find adequate housing, develop resilience, engage in valued activities, and maintain meaningful relationships. Positive long-term outcomes, such as “thriving” (briefly defined as an upward developmental trajectory whereby individually or functionally valued behaviors increase, and the individual makes more contributions to self, family, and community) (Benson and Scales, 2009), remain understudied in individuals with mental health impairments. The amount of research exploring how individual and contextual factors differ for individuals with multiple impairments, such as intellectual disability and autism spectrum disorder, is particularly sparse (Weiss and Riosa, 2015).
Box 3-3 lists sample outcome measures in the four domains discussed above.
A life course perspective on disability acknowledges that what happens earlier in life affects what happens later. As outlined in this chapter, an array of near- and long-term outcomes are potential targets for programs and services for school-aged children with disabilities and their families. The committee identified two primary outcome domains as the focus of services and programs for children with disabilities: health (including health potential) and social and human capital development. The latter domain encompasses education, skills for daily living, communication and social skills, self-determination, employment and earnings, community participation,
7 It is important to acknowledge that for many young adults with severe disabilities, fully independent living, as opposed to assisted community living, is not a reasonable goal.
and independent living. Within each of these domains, the committee has defined optimal outcomes and provided a number of sample outcome measures by which progress toward achieving those outcomes might be tracked. Achieving optimal outcomes across these domains will ultimately improve the child’s quality of life.
A variety of factors related to the family can greatly influence the child’s health outcomes. For example, if a family is more financially stable and parents experience better physical and mental health, a child may be more able to benefit from special education that enhances his or her academic skills, which in turn can contribute to positive long-term transition outcomes such as employment. Furthermore, long-term outcomes, particularly after youth transition into adulthood, are cumulative, not easily attributed to the impact of any one particular child-focused program. The transition to adulthood presents special challenges for youth with disabilities, and near-term outcomes during this period can greatly impact these youth’s long-term health outcomes.
Based on its examination of optimal health and functioning outcomes for children with disabilities, the committee drew the following conclusions:
- 3-1. Positive health and functioning outcomes for children with disabilities occur along a continuum. Successful outcomes are not to be equated exclusively with the complete resolution or amelioration of disability or the partial or complete reduction of the need for disability-related programs and services, but rather with enhancement of the child’s health and quality of life and ability to participate meaningfully in society.
- 3-2. A large proportion of children with disabilities, especially those with severe disabilities, require disability-related services and supports throughout their lives, and the nature and intensity of those services and supports will evolve over time.
- 3-3. A life course perspective on disability acknowledges that early experiences impact later experiences and long-term outcomes. Therefore, it is important that near- and long-term goals be linked to the attainment of desired long-term outcomes and directly aligned with a long-term strategic plan for each child and her or his family.
- 3-4. For children with disabilities, a successful transition to adulthood requires the acquisition of developmentally appropriate building block skills throughout childhood and adolescence to maximize strong long-term outcomes.
To achieve progress in the outcome domains discussed in this chapter, children with disabilities will need varying levels of support across the life
span. When children with disabilities do not receive quality services that help address their unique needs, many are at increased risk for a variety of potential negative outcomes compared with their counterparts without disabilities or with those children with disabilities who receive services such as those described in Chapters 4 through 6. In the ensuing chapters, this report examines a variety of services and programs focused on health care and social and human capital development that are designed to help children with disabilities achieve the optimal health and functioning outcomes and avoid the negative outcomes discussed in this chapter.
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