Abstract

Employment, career advancement, and financial independence are highly valued in the United States. As expectations, they are often instilled at a young age and incentivized throughout adulthood. Despite their importance, employment and economic sufficiency continue to be out of reach for most people with intellectual and developmental disabilities (IDD). Over the last quarter century, extensive research and effort has been committed to understanding and improving these phenomena. This paper summarizes this employment research base by reviewing the literature on the effectiveness of the current employment support system, employment-specific interventions, and the economics and cost benefits of employment for people with IDD. Recommendations and directions for future research are also presented.

People with intellectual and developmental disabilities (IDD) are recognized to be greatly underrepresented in today's general workforce (American Association on Intellectual and Developmental Disabilities & The Arc of the United States, 2008; Migliore, Mank, Grossi, & Rogan, 2007). Yet research has found that most adults with IDD seek economic independence and self-sufficiency and include employment in the community among their top stated goals (Gray, McDermott, & Butkus, 2000; Migliore et al., 2007). For youth with IDD, there has also been ample research to show that employment is a shared goal among family members and individuals (Chambers, Hughes, & Carter, 2004; Grigal & Neubert, 2004; Migliore et al., 2007).

In the policy arena, employment goals are supported through guidelines and legislation (Hoff, 2012; Silverstein, 2003, 2007; U.S. Department of Health and Human Services, 2011). Some of the major policies enacted to facilitate greater inclusion of people with disabilities in the workforce include the Developmental Disabilities Act of 1984, the Rehabilitation Act Amendments of 1986, the Workforce Investment Act of 1998, the Americans with Disabilities Act of 1990 as amended, and the Ticket-to-Work and Work Incentives Improvement Act of 1999. Employment and a career are also chief intended outcomes of federally mandated special education for all youth with disabilities. The notion that all youth receiving special education services can be presumed employable is a cornerstone of federal special education and vocational rehabilitation legislation (Individuals with Disabilities Education Improvement Act, 2004; Workforce Investment Act, 1998).

Despite the major policy and fiscal investments in employment services, at present, no national population estimates of the employment and labor force participation rates of people with IDD exist, making it impossible to know how many people with IDD are actually employed across the United States. A reasonable proxy to IDD is the American Community Survey's definition of cognitive disability, which is defined as having a physical, mental, or emotional condition that presents a serious difficulty concentrating, remembering, or making decisions (U.S. Census Bureau, 2010). Using this broader definition, it is estimated that in 2011 23.0% of working-age Americans with cognitive disabilities were employed, and another 11.4% were unemployed but looking for work (Erickson, Lee, & von Schrader, 2012). Not only are these outcomes low compared to the general population, they are also lower than many other disability groups, such as visual, hearing, and ambulatory disabilities (Erickson et al., 2012; U.S. Department of Labor, 2013).

System-Level Understanding

The low level of employment of people with IDD exists in the context of complex and often fragmented education, vocational rehabilitation, and human service systems that provide a wide range of employment supports for many youth and adults. These systems have varied success in supporting people with IDD. A recent study analyzing the National Longitudinal Transition Study 2 database, which included a large percentage of students with intellectual and multiple disabilities, found that only 26% of youth and young adults were reported to be employed two years after high school. This report does not differentiate the type of employment achieved and likely includes a large number employed in congregate settings earning below minimum wage (Carter, Austin, & Trainor, 2011b). In fiscal year 2011, state vocational rehabilitation programs successfully achieved employment outcomes for, on average, 51% of 47,812 people with intellectual disabilities that received services, ranging from 29% in Arkansas to 75% in Delaware (Butterworth et al., 2013). Similarly, disparate system outcomes were found to exist in the state developmental disabilities agency-funded support system (Butterworth et al., 2013; Human Services Research Institute & The National Association of State Directors of Developmental Disability Services, 2012), and the percentage of people receiving integrated employment services as a percentage of all day and employment services has declined since the 1990s (Butterworth, Smith, Hall, Migliore, & Winsor, 2012).

For many people with IDD, the various publicly funded systems are an important component to accessing the employment and personal supports needed to obtain and maintain work. Thus, in summarizing the state of the science in employment and self-sufficiency, it is important to recognize the system research occurring in the field. In an attempt to describe the system and state-level conditions that facilitate system change for greater integrated employment services, recent research has provided an avenue of understanding. Through this line of research, characteristics of high-performing state systems have been identified, and they include (1) use of flexible employment service policies that identify employment as the preferred outcome with latitude for service providers to innovate, (2) use of flexible funding to accommodate the changing employment support needs of each person, (3) an effective weaving and braiding of multiple funding sources, (4) use of incentives to guide the service delivery system to implement integrated employment services, and (5) use of data to monitor and evaluate progress and goal attainment (Cohen, Butterworth, Gilmore, & Metzel, 2003; Hall, Butterworth, Winsor, Gilmore, & Metzel, 2007; Hall, Freeze, Butterworth, & Hoff, 2011).

In addition, system investment in the employment support workforce was also identified as a key characteristic. For effective employment services, it is necessary to provide training and development to equip employment professionals with knowledge and skills about best practices to effectively support people with IDD in the community (Conley, 2003; Hall et al., 2007; Migliore, Butterworth, Nord, Cox, & Gelb, 2012). Effective training and development can pay dividends, as research has found, through more community-based job placements and job placements with high wages and more work hours per week (Butterworth, Migliore, Nord, & Gelb, 2012).

Employment Support Interventions

In assessing the state of the science in employment and self-sufficiency for people with IDD, it is necessary to recognize the substantial and lengthy research history of tested interventions that lead to improved outcomes and enhanced career opportunities. Many of these interventions are anchored in the instructional strategies applied to employment settings that were pioneered in the 1970s and 1980s by research groups from the Research and Training Center at Virginia Commonwealth University, the University of Illinois, and the University of Oregon. This early work on instructional approaches was driven by applied behavior analysis and direct instruction methods. It emphasized the use of detailed task analyses and instructional techniques that included visual, audio, and kinetic methods to create models that were rooted in behavioral chaining and practice to the point of fluency. Central to these instructional methods was an assumption that failures to learn were the responsibility of the instructor rather than a failure of the learner.

Additional techniques to improve independence and job success focus on self-management strategies for employment (Rusch & Dattilo, 2012). Self-management strategies create methods of learning and reminders that allow the individual employee to continue job performance in the absence of a trainer and with minimal supervision over time. Methods of self-management include templates for counting, timekeeping devices to track pace, and visual cues for sequencing tasks that comprise a job.

More recently, with the emergence of increasingly smaller computing technologies, such as smartphones and tablets, technology-based interventions are emerging and hold great promise for supporting ongoing independence (Banda, Dogoe, & Matuszny, 2011; Van Laarhoven, Johnson, Van Laarhoven-Myers, Grider, & Grider, 2009). These devices enable new support practices to be implemented. For example, ubiquitous video recording by way of a smartphone allows for the recording of job tasks and sequences. These approaches can assist employees in learning and completing specific job duties. They can also be used to demonstrate completed tasks. In addition, technology interventions, including handheld motorized devices (e.g., power tools), reduce the physical demands of some jobs that may interfere with independence.

Another important intervention strategy is that of natural supports. These supports make use of the antecedent conditions and the existing supports and supervision that naturally occur in a workplace. Natural supports emerged in the 1980s with the pioneering work out of the University of New Hampshire. Natural supports are intervention strategies related to the individual inasmuch as they require training an individual employee to pay attention to the cues and supports in the natural environment. Natural supports are also intervention strategies implemented through an employee's coworkers and supervisors because they will act as the primary resource for the employee with IDD by providing assistance through activities such as instruction, redirection, and supervision.

Individual intervention outcomes have been improved with person-centered career planning (PCP) (Claes, Van Hove, Vandevelde, van Loon, & Schalock, 2010). The PCP process includes the participation of the person with IDD as well as those in a close circle of family and friends in planning for employment that is based entirely on an individual's interests and abilities rather than deficits. The process also considers and accounts for the ability of the person's personal network to find or develop suitable employment prospects likely to result in success. The PCP process is focused on planning for success rather than any specific individual-level intervention. Specific interventions may be identified during the PCP process as important mechanisms to facilitate employment. In contrast to deficit-based planning methods, PCP emphasizes what a person wants to do and what skills can be acquired in the workforce.

Person-centered career plans are most effectively realized when partnered with best practices in developing job placements and opportunities, connecting with employers, and facilitating ongoing supports after attaining employment. Customized employment is being recognized as a promising practice to achieve these goals in the employment support field. Unlike traditional job search and support activities that rely on passive and competition-based strategies, such as submitting résumés for a job opening (Bissonnette, 1994; Bolles, 2009; Levinson & Perry, 2005), customized employment aims to design a job around the unique skills and talents of a job seeker by selecting the various job tasks that directly match these skills and talents to the needs of the business (Griffin, Hammis, & Geary, 2007; Luecking, Fabian, & Tilson, 2004). Although it is still an emerging area of research, evidence suggests a link to the implementation of customized employment practices and better outcomes for people with IDD, including higher wages, more hours, and greater job retention (Butterworth, Migliore, et al., 2012; Rogers, Lavin, Tran, Gantenbein, & Sharpe, 2008).

Many studied interventions are applicable across working age. There is also considerable research assessing interventions specifically aimed at those transitioning from high school to adult life. Extensive historical and emerging evidence exists about what is possible for post-school employment success and what will be required to achieve it. A recent study by Carter et al. (2011b) that examined factors associated with employment two years following high school found, for those employed, there were two factors that correlated strongly with post-school employment: hands-on work experiences during high school and high parent expectations. The implications are clear from this and other related studies that authentic work experiences are clearly suggested as essential educational interventions if employment outcomes are to be routinely achieved by youth in transition (Carter, Austin, & Trainor, 2011a; Carter et al., 2011b; Timmons, Hall, Bose, Wolfe, & Winsor, 2011).

Various other studies affirm the value of paid employment, specifically in community settings, as an educational intervention. For example, Fabian (2007) reported that youth with intellectual disability fared as well as any other disability group participating in a standardized internship program across multiple geographic locations. All groups were reported to achieve significantly high post-school employment as a result. Certo and Luecking (2006) demonstrated the value of paid employment as a transition intervention jointly provided by schools and adult-service providers for youth considered to have significant intellectual disability. Up to 70% of these youth achieved integrated employment post-school. They additionally demonstrated that integrating the services of the schools and collaborating adult-service entities can result in students seamlessly continuing into post-school life with employment secured before school exit. Moreover, employment is more likely to be a post-school expectation for youth with intellectual disability when youth have experiences in authentic workplaces early and often during their secondary education years. This is especially so when paid employment is on a youth's resume and vocational supports are in place by the time they exit school (Carter et al., 2011b; Certo & Luecking, 2006; Fabian, 2007; Wagner, Newman, Cameto, Garza, & Levine, 2005). In other words, it is a reasonable expectation that work be both an integral part of the educational experience for youth with intellectual disability as well as the expected outcome.

One study currently underway is illustrating the relationship of youth work experiences and additional incentives to make work more attractive to youth receiving public income benefits. Through a rigorous random assignment research design, the Social Security Administration (SSA) is funding and evaluating employment-focused interventions for youth in six sites across the country (Fraker & Rangarajan, 2009). The interventions consist of enhanced SSA work incentives, individualized employment services, and benefits planning and management. The study, known as the National Youth Transition Demonstration (YTD), is gathering data on treatment and control group members for up to four years following random assignment through surveys and SSA administrative records. The YTD program of research will assess whether the six YTD projects, each serving over 400 youth, are successful at improving transitions to adulthood by comparing mean values of outcomes, such as earnings and disability benefit amounts, for the treatment and control groups. The results of the YTD, which become available in 2013, will provide critical information about the prospects of employment and self-sufficiency for individuals with intellectual and other significant disabilities who are at risk of a lifetime of poverty in the absence of effective transition interventions.

The Economics of Work

There is a lengthy history of economic research related to the employment and self-sufficiency of people with IDD. Since the implementation of supported employment in the 1980s, community-based employment support service has received considerable attention. As a tax-payer investment, studies from the 1980s and 1990s suggest the cost-efficiency of support employment in the community is mixed (Hill & Wehman, 1983; McCaughrin, Ellis, Rusch, & Heal, 1993; Rusch, Conley, & McCaughrin, 1993; Tines, Rusch, McCaughrin, & Conley, 1990; Wehman et al., 1985). More recent research found that context matters greatly in that the cost-efficiency for tax payers depends on the state in which employment services are provided (Cimera, 2010a, 2010b). In addition, the phase of support for the supported employees working in the community matters. Initial support costs are highest, and greater cost-efficiencies are realized over time (Cimera, 2008, 2012).

A key area of focus when considering the economics of employment of people with IDD is that of earnings. Without adequate income, economic self-sufficiency through employment alone remains an unattainable goal. Recent research continues to indicate that workers with IDD employed in the community typically earn wages near the national minimum and work about 20 hours per week on average (Cimera, 2010b; Cimera & Burgess, 2011; Human Services Research Institute & The National Association of State Directors of Developmental Disability Services, 2012), resulting in an income below the national poverty line. Yet, as pointed out in a recent review of research by Cimera (2012), extensive research has been conducted since the 1980s that has found people with disabilities in general and people with IDD specifically benefited more financially by working in their community than working in sheltered workshops. These findings have been confirmed in more recent studies, some of which replicated the cost-accounting methodologies used in earlier research (Cimera, 2009; Cimera, 2010b; Cimera 2012; Cimera & Burgess, 2011).

It must be recognized that the economics related to employment earnings are confounded by the public benefit programs many people with IDD rely on for income support and medical insurance coverage. A key eligibility requirement of programs such as Social Security Disability Insurance is the inability to work gainfully; thus those who are able to earn more than the preset income threshold risk losing public benefits. A number of employment incentives exist, including Plans for Achieving Self-Support, Impairment Related Work Expenses, Medicaid Buy-In, and the Ticket-to-Work program. These approaches aim to provide beneficiaries of specific benefit programs greater opportunities to work and earn more income while reducing the negative impact of higher earnings on benefit eligibility. To assist workers in navigating this complex work-benefit landscape, benefits counseling has been found to be an effective strategy that leads to better employment outcomes, including higher earnings (Delin, Hartman, & Sell, 2012; Gruman, Shugrue, Kellett, Robinson, & Porter, 2010; Tremblay, Smith, Xie, & Drake, 2004).

Future Research and Considerations

The continued low rates of employment for people with IDD indicate major challenges to providing and supporting the experiences that produce employment outcomes for people across all stages of life. Wagner et al. (2005) found that youth with intellectual disability as a group had among the lowest post-school employment rates (slightly more than 20%) of any disability group. This number is misleading because it did not distinguish between level of intellectual disability and it did not distinguish between direct hire, integrated employment and congregate sub-minimum wage employment in the analysis. This reflects the difficulty in gathering good employment data on this group due to the wide disparity of functional levels and support needs of individuals classified as having an intellectual disability. It also reflects the different avenues to employment historically available to this group. Thus, without careful and rigorous research designs, it is difficult to make adequate comparisons that would allow more definitive conclusions as to why employment was not achieved.

The issue of employment is further complicated by the fact that it may or may not result in economic self-sufficiency. Recent data indicate that there are over 113,000 people supported in integrated employment services annually through state developmental disabilities agencies across the United States, a figure that is about a quarter of the number of people accessing facility-based employment services or nonwork services (Butterworth Smith, et al., 2012). The majority of these groups receive public income support, such as Supplemental Security Income, and live on what most would consider a subsistence income. Although the net income of people with IDD who work in integrated employment exceeds the net income of those who work in congregate settings, on average it is still below the federal poverty line (Cimera, 2011). Further research is required to clarify the most effective interventions in transition and adult employment services and supports.

Additionally, future research must continue to investigate and identify existing, emerging, and new interventions that promote the exposure of students and adults with IDD to work experiences and paid work. In particular, it is important to examine the features of school-provided, supported employment-related services and how effectively they are incorporated into the curriculum and into transition services (Getzel, 2012). It is important for future research to be able to answer

What can schools do to improve preparation for transition to employment?

How effective are different employment-related interventions in achieving employment outcomes in school and in adulthood?

Specific support practices must also be further tested. For example, customized employment and other approaches continue to produce positive results; however, the research related to these approaches needs additional attention. Specific research questions that can begin this search include

What employment support practices are most effective in achieving employment outcomes, such as increased wages and hours, and career advancement opportunities?

How are best practices in employment support most effectively brought to scale?

As pointed out by Callahan, Griffin, and Hammis (2011), in many respects, the U.S. disability service system has limited the full access of people with IDD to their communities. Whereas people without disabilities often rely and draw on their own social capital to find and keep work, many people with IDD lack these personal networks to facilitate employment. Looking to the future, research must not ignore the role of one's personal network and the local community in relation to work acquisition and supports. Specific questions may include

What are the key characteristics of personal networks and communities that facilitate employment?

How can the employment support system effectively develop, facilitate, and access the personal network and social capital of people with IDD?

In addition, given the emerging literature on the correlation between high individual and family expectations and employment outcomes (Carter et al., 2011b), the landscape is ripe for further examination of those factors that encourage high expectations. For individuals and families, more research will inform and guide how they can raise expectations for post-school employment and what supports are useful to foster informed student choice as they pursue these outcomes.

What are effective strategies and interventions to raise employment-related expectations of individuals and families during the pretransition, transition, and adult years?

Finally, as mentioned earlier, employment services and supports occur across a number of large service systems. A common scenario for youth and adults with IDD includes interaction with an array of service entities that are often uncoordinated and disparately operated (Certo et al., 2008; Hall et al., 2011). Students and adults with IDD can expect to interact with multiple service systems. Typically, they may be simultaneously served through schools, state vocational rehabilitation agencies, state or regional developmental disabilities agencies, and, in many cases, the workforce investment systems. For the transition and adult systems, expectations of better employment outcomes will be influenced by identifying the conditions under which transitions services collaborate and what makes collaboration effective (Fabian & Martin Luecking, 2012; Hall et al., 2011; Oertle & Trach, 2007). Research questions to investigate include

How can disparate systems that interact with people with IDD collaborate for better outcomes?

What are effective system change activities to improve system expectations and outcomes related to employment?

What system practices and policies are most effective in improving employment overtime?

Conclusion

Research in the area of employment and economic self-sufficiency for people with IDD has a lengthy and productive history. The research has adapted to, tested, and improved the ongoing developments made in policy, services, and supports. Recent practice developments are providing opportunities by presuming the employability of the transitioning youth and adults with IDD. Increasingly, available research is supporting the efficacy of this belief. This is also supported in legislation and policy. Policy is also being challenged to encompass employment in its focus. For example, title II of the Americans with Disabilities Act (ADA) and the related Olmstead v. L.C. decision provide many people with IDD new opportunities when applied to employment services and supports. The ADA's integration mandate, as currently being litigated by the U.S. Department of Justice, would require the provision of community employment services for those wanting to work in the community rather than serving people primarily through segregated settings. To realize the full scope of the ADA and the enforcement of the Olmstead decision, research will play a role in identifying and improving employment interventions and monitoring ongoing progress to achieving the policy's goals.

Despite the advancements, people with IDD continue to face systemic and social barriers that prevent the majority from ever experiencing a job in the community. The likelihood of unemployment and poverty for people with IDD is unacceptable. People with IDD can work, want to work, and have the right to work, and, in spite of the challenges and barriers, some people are achieving exceptional employment outcomes. As the field progresses forward, further investigation is needed regarding how to make employment the norm rather than the exception.

Acknowledgments

This article was supported by Grant H133B080005 from the National Institute on Disability and Rehabilitation Research, U.S. Department of Education.

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Author notes

Authors:

Derek Nord (e-mail: nord0364@umn.edu), Research and Training Center on Community Living, University of Minnesota, 150 Pillsbury Dr. SE, Minneapolis, MN 55455, USA; Richard Luecking, TranCen, Inc.; David Mank, Christina Wray, Indiana Institute on Disability and Community, Indiana University; William Kiernan, Institute for Community Inclusion, University of Massachusetts Boston.