7 Inclusive Culture Guidelines

I recently interviewed 6 representatives from diversity & inclusion leading corporations. The interviewees were asked what are their key recommendations to foster an inclusive culture. These recommendations were developed into a short list of thought leadership points for developing an inclusive environment. What would you add to the list?

1. Embed diversity and inclusion into your core values
2. Develop internal key messaging to reflect the core values
3. Make it open and easy for everyone to participate and offer ideas
4. Make resources easily and readily available
5. Encourage employees to volunteer or be a part of the groups/organizations that may exist within the company so that they may meet people out of their own business units/departments
6. Build in accountabilities by building in objectives and performance measurements in the evaluations
7. Focus not on retention, but on success

Defining Diversity

I recently interviewed 6 representatives of major corporations in the United States that are openly dedicated to diversity and inclusion. I was curious to know how they personally defined diversity. As you read, consider how you might define diversity...share below!

In an interview with representatives from leading inclusive corporations in the U.S., I asked them to define, in their own words what does diversity and inclusion mean to them. The findings revealed that the participant’s descriptions included four common dimensions: actuality, customer representation, holistic culture and inclusion. Actuality is the actual characteristics of differences. The actuality dimension of diversity was described in terms of ideas, preferences, backgrounds, racial/ethnic origins, sexual orientations, as well as physical and intellectual disabilities. The customer representation dimension is defined as the ability to synthesize differences to meet customer interests. It described diversity as the opportunity to drive solutions to clients that are holistic in scope and that allow the company to approach customers with various interests. In addition, the customer representation dimension described diversity as the opportunity that reflects every possible difference that may impact the solution. The holistic culture dimension described diversity as an ability-focused environment that celebrates the difference between core values and day-to-day employee engagement. The holistic culture dimension was described by multiple participants as something that is embedded so deeply, it’s just assumed to be a part of business culture. The inclusion dimension described the actions taken to include individuals with differences; in particular, it is the leveraging of differences to foster high performance and produce better business results. It’s the act of establishing the necessary processes and attitudes to ensure that employees can accomplish success.

As a result, a summation of diversity in the workforce that incorporates all the interviewee input is as follows:

Diversity is the holistic empowerment of differences, leveraging all possible perspectives to produce high performance in the development of solutions that meet customer interests. 

Barriers to Enter the Workplace

Preventive Factors in Hiring Individuals with ASD

The resources available are valuable, but it thought that there is insufficient guidance and support on the employer side to understand the full scope of the opportunity and a lack of employer tools available to smoothly integrate employees with ASD (Bruyere, 2000; Jans, Kaye, & Jones, 2011). For example, when people think of disabilities in the workforce, they think of physical and sensory disabilities. They do not usually think of people with developmental disabilities (Siperstein, Romano, Mohler, & Parker, 2006). There is also a deficit of knowledge and training for supervisors on how to make accommodations (Bruyere, 2000). The following outlines additional factors preventing individuals with ASD from being hired by businesses. 

employer assumptions.

Overall, it is difficult to determine employer opposition to hiring and maintaining employees with disabilities. The barrier to hiring is thought to be summarized simply as fear (Kirkbride & Peck, 2001). Employers assume that people with disabilities are a liability for several reasons (Kirkbride & Peck, 2001). For example, they are concerned about possible safety issues that may arise as a result of the disability (Alexander & Morgan, 2005). In addition, employers fear they cannot terminate employees with disabilities after hiring them (Hernandez & Keys, 2000). There are also employers who feel that employees with disabilities are too protected, and therefore cannot be terminated, even if the employee does not meet the minimal expectations (Kirkbride & Peck, 2001). Furthermore, they worry that employees with disabilities will be expensive and may not hire them based on perceived costs (Hernandez & Keys, 2000). Employers tend to associate employees with disabilities as an expensive and risky investment. They do not understand the accommodations and do not know if the employee will meet expectations (Kirkbirde & Peck, 2001). Key cost concerns include training, supervision, and accommodations (Bruyere, 2000). Employers also assume that productivity will be compromised as a result of additional training and supervisor attention (Kirkbride & Peck, 2001). Lastly, employers are hesitant to trust vocational placement agencies. They know that the goal of placement agencies is to increase placement numbers and thus employers do not have confidence in that the candidate is truly qualified (Kirkbride & Peck, 2001).

employer attitudes.

While the exact reason is unknown, research suggests that one of the main preventative factors for hiring employees with disabilities is their preexisting attitude (Bruyere, 2000; Hernandez & Keys, 2000; Jans, Kaye, & Jones, 2011; Siperstein, Romano, Mohler, & Parker, 2006). A national survey of the hiring practices of federal agencies suggested that lack of employee experience with people with disabilities can be a contributing factor (Bruyere, 2000). Interestingly, the global attitudes of employers are positive. Global attitudes are defined as the response toward the general idea of something (Bruyere, 2000). In this case, employer global attitudes toward the idea of employees with disabilities in the workplace tend to be positive (Hernandez & Keys, 2000). However, employers tend to have negative attitudes about more specific and actionable ideas related to employees with disabilities, particularly those with intellectual disabilities (Hernandez & Keys, 2000). Specific and actionable ideas such as hiring, assigning tasks and promoting are all received with negative attitudes (Hernandez & Keys, 2000). The limitation of attitudinal studies is that the research does not measure actionable intention and behaviors of employers (Hernandez & Keys, 2000). Large and small business have different concerns that inhibit them from hiring persons with disabilities. Small businesses tend to be concerned about employee productivity; mid-sized companies are concerned about referral validity from rehabilitation centers; and large companies are challenged by resistance from managers (Bezyak, Chan, Copeland, & Fraser, 2010).

supportive services for individuals with ASD are inadequate.

According to a longitudinal study on vocational programs for young adults with ASD, evidence for positive benefits is inconclusive due to the poor quality of research and limited studies (Siperstein et al., 2006). In particular, studies related to supported employment and ASD are minimal, and cannot provide support for this type of service (Siperstein et al, 2006).

The VR system is valuable, but limited as less than .05% of their clients are diagnosed with ASD (Cimera & Oswald, 2009). The VR is not equipped to evaluate the diversity of ASD, resulting in individuals with ASD not finishing the evaluation process, and if they do, they end up with incompatible placements (Standifer, 2009). In addition, of all VR clients with disabilities, an average 66.5% leave because they cannot get employment (Cimera & Oswald, 2009).

If employers seek private resources, such as Diversity Inc. or USBLN, they are required to pay for the memberships. That means that accessing excellent resources can be expensive. In general, there is a lack of support for employers to successfully modify their hiring and training practices (Jans, Jones, & Kaye, 2011).

Vocational Rehab & ASD

As a result of a growing population of adults with ASD who need support entering the workforce, there has been a substantial increase in efforts to offer vocational rehabilitation, job training, and opportunity (Autism Speaks, 2013b). Individuals with ASD can participate in the workforce through the same channels as those without disabilities including: self-employment, customized employment, and competitive employment (Autism Speaks, 2013). In addition, there are facilitated options (supported by individuals and/or employment support organizations) that are unique to individuals with disabilities such as supported employment or sheltered workshops (Dove, McPheeters, Sathe, Taylor, Veenstra-Vanderweele, & Warren, 2012). Supported employment typically occurs in community-based jobs with a job coach (Dove et al., 2012). Sheltered workshops are a setting in which only disabled coworkers perform tasks in a segregated and supported setting (Dove et al., 2012).

About 17% of young adults with ASD enter competitive employment directly out of high school (Taylor & Selzer, 2012). However, when facilitated employment options are included, the rate increases to 37% for young adults with ASD (Taylor & Selzer, 2012). Although this is still half the rate of young adults without disabilities (Newman, Wagner, Knokey, Marder, Nagle, & Shaver, 2011), the rate demonstrates that facilitated options can double employment opportunities for those with ASD.

As described earlier, the VR is comprised of state-operated centers offering competitive employment opportunities to people with disabilities. Brusilovskiy, Lawer, Mandell, and Salzer (2008) evaluated adults with ASD in the VR and found individuals with ASD are also the most likely population to be denied state vocational services due to the severity of their condition. However, of the clients accepted by the VR, 42% worked in competitive employment (Brusilovskiy, et al., 2008). Inclusion success was measured using factors such as higher functional skills, comparative conversational skills, high social capital and higher household income (Anderson et al., 2013). In addition, the use of services directly resulted in likelihood to achieve employment (Anderson et al., 2013).

When an individual uses the VR, the expense to the state to maintain an employee with ASD is an average of $2,380 per person, the highest average of all comparable disabilities (Brusilovskiy, et al., 2008). Similar to employees with comparable disabilities, 28% of the clients with ASD did not have any costs associated with them (Brusilovskiy, et al., 2008). This demonstrates that almost one out of three individuals with ASD employed through the VR have no additional cost to the company associated with their employment. However, of those that do have additional cost, it is approximately $2,300 USD. This indicates that determining a general representation of the potential efficiency and cost of an employee with ASD is difficult, because the nature of the diagnosis is dynamic and each individual calls for a unique set of accommodations (if any at all). Accommodations include job coaches, mentors, on-site training, simulation training, daily schedule prompts, visual prompts, transition warnings, work area with minimal distractions, headphones, routine breaks, PDA with communication software, sensitivity training for co-workers and self assessments (Standifer, 2009). In addition, assessment and evaluation tools are particularly useful for defining opportunities. Taylor and Selzer (2012) developed a Vocational Index for individuals with ASD on a scale of independence. The Vocational Index is a coding system with eleven categories coded on a 9-point scale to reliably evaluate the individual with ASD’s current employment experience. It is based on the inherent responsibilities of their education/job and the number of employment hours (Taylor & Selzer, 2012). This tool and similar tools measuring vocational experience are useful for analyzing vocational progress over time and/or for predicting vocational outcomes (Taylor & Selzer, 2012).

ASD & Legislation in the U.S.

Key Legislative Initiatives

         integration into society. Over the last 40 years, several critical pieces of U.S. federal legislation have changed the lives of individuals with disabilities in society, greatly improving their ability to attain their legal rights and live fulfilling lives. The Civil Rights Act of 1964 prohibited discrimination founded on race, color, religion, sex or national origin (USS CoJ, n.d.). However, it did not explicitly include individuals with disabilities. To secure the civil rights of individuals with disabilities, the Rehabilitation Act of 1973 was formed to enforce national law prohibiting discrimination based on disabilities. The Rehabilitation Act continues to protect civil rights and authorizes grants for vocational rehabilitation, employment, independent living, individual support and research (Autism Society, n.d.b.). Another important piece of legislature passed by the U.S. Congress is The Individuals with Disabilities Act (IDEA) of 1975. It mandates that all public schools in the U.S. must provide accommodations for children with disabilities to maximize their access to school curricula in the least restrictive environment.

         The ADA of 1990 updates to the Rehabilitation Act of 1973 and more specifically forbids discrimination in the areas of, “employment, state & local government, public accommodations, commercial facilities, transportation, and telecommunications” (Civil Rights Division, 2009). Of particular significance for the ADA is Title I, which reinforces verbatim the same provisions as the Rehabilitation Act, mandating that employers must provide equal opportunity employment and make reasonable accommodations for known disabilities (Civil Rights Division, 2009).

         In 2000, President Clinton issued the Executive Order 13162 to increase the number of employees with disabilities in the workforce and declared that the federal government should be the model employer (U.S. Government Printing Office, 2000). President Barrack Obama reissued President Clinton’s Executive Order 13163 and repositioned it by focusing specifically on recruitment of individuals with disabilities. The Executive Order included the establishment of the “Internship Program” and the “Recent Grad Program”, which came to be collectively known as the “Pathways Programs”, to provide meaningful opportunities to qualified individuals with disabilities (The White House, 2010).

         The Rehabilitation Act Section 503 Revisions of 2014 is the most recent legislative update. Effective March 24, 2014 federal contractors and subcontractors are required to take affirmative action to actively recruit, hire, promote and retain individuals with disabilities in an effort to improve job opportunities and improves compliance with the ADA (Department of Labor, 2014). The objectives of the Section 503 Revisions include: achieve a 7% utilization goal for qualified individuals with disabilities; documentation and updates of quantitative data of the number of individuals with disabilities that apply and that are hired; invitations for employees to self-identify; and grant permission to the OFCCP to check that the contractor is in compliance (Department of Labor, 2014).

         health and advocacy. As awareness for developmental, intellectual and mental disabilities increased in the United States, there was growing pressure on the health sector to take action to improve the management and treatments available for ASD. In 2006, the first ASD-specific piece of legislation, the Combating Autism Act, recognized ASD as a national healthcare crisis. Since its commencement, it has directed approximately $950 million for designing and implementing a strategic plan dedicated to ASD research (IACC, 2011).

         In addition, President Obama’s ACA of 2010 is widely considered a major health reform supporting ASD related medical needs (HHS, n.d.b). Starting in 2014, individuals can no longer be denied health insurance coverage for pre-existing conditions, including ASD (HHS, n.d.b). Additionally, the ACA covers preventative measures such as ASD screening for children 18-24 months along with significant changes. These changes include: no more lifetime dollar limits, young adults up to 26 years old with ASD coverage by their parents and new insurance plans tailored around ASD (HHS, n.d.b). Soon after the ACA, the Combating Autism Reauthorization Act of 2011 authorized $693 million federal dollars for ASD research, treatment and services through September 2014 (Autism Speaks, 2014). In February 2013, the ABLE Act was an initiative introduced to Congress proposing that families with children with disabilities may create tax-exempt savings accounts for their child’s future needs including education, housing and transportation (Congress, 2014). The ABLE Act has been referred to the Subcommittee on Health and has not made progress since then.

         In addition to federal initiatives supporting the ASD community, most of the 50 states and the District of Columbia have legislation related to ASD and developmental disabilities. As of 2014, thirty-four states and the District of Columbia have insurance coverage laws for individuals with ASD (Autism Speaks, 2014). For example, the Lanterman Act of 1977 passed in California to grant people with developmental disabilities support through the California regional centers for treatment, advocacy and protection (CDDS, 2001). In 2013, California joined more than half the states with their Self-Determination Act offering alternatives to the traditional delivery and management of healthcare services, commonly referred to as self-directed services. Self-directed services mean that Medicaid participants are provided with an individual services budget and increased flexibility to fulfill their IPP (California Legislative Information, 2013).

DSM-5 & The Autism Dx

         ASD was first included in the APA DSM-III in 1980 as “infantile autism” (APA, 2010). In today’s DSM-5, it is referred to as “Autism Spectrum Disorder” (APA, 2013). The most recent change from the DSM-IV to the DSM-5 was a significant diagnostic change because of reasons explained by the chair of the DMS-5 Task Force: “In suggesting these revisions, the work group has considered the many advances in the field of ASD and neurodevelopmental disorders, as well as concerns of advocacy groups, family members and the medical groups who treat those living with autism disorders” (APA, 2010).

            The DSM-IV had ASD divided into four separate disorders: autistic disorder, Asperger’s disorder, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified. Consistency in diagnosis was complicated, so the DSM-5 brought them together under the same umbrella to improve diagnostic accuracy (APA, 2013b). The reason for this was explained by a member of the DSM-5 Neurodevelopmental Disorders Work Group as, “The recommendation of a new category of autism spectrum disorders reflects recognition by the work group that the symptoms of these disorders represent a continuum from mild to severe, rather than being distinct disorders” (APA, 2010). All diagnoses from the DSM-IV are still applicable to the DSM-5 criteria for ASD, but instead of separately defined conditions, they are now on defined on a continuum. In addition to combining the diagnoses, the APA also added new components - overall development, course and language - all in an effort to create a more sensitive and accurate diagnostic standard (APA, 2010). A final change to the DSM-5 was to the diagnostic criteria: in DSM-IV the onset of ASD was not defined, but the DSM-5 indicates that ASD characteristics must be present from early childhood.

Defining ASD

Autism Spectrum Disorder (ASD) is a complex set of characteristics that continues to evolve as more research surfaces with new findings. It is recognized more frequently in males, with a male to female ratio of 4:1 (NIH, 2013; NIMH, 2013). Co-occurring conditions are common and typically include: Fragile X syndrome, tuberous sclerosis, epileptic seizures, Tourette syndrome, learning disabilities and attention deficit disorder (APA, 2013; NIMH, 2013). The most common co-occurring condition is epilepsy, developing in 2-3 out every 10 cases (NIMH, 2013). The cause of ASD remains unknown with research focusing on genetic, prenatal, neurological and environmental factors or a combination thereof. There are several different interpretations for defining ASD. The Center for Disease Control and Prevention (CDC) (2013) offers a sociological perspective stating:

Autism spectrum disorder is a developmental disability caused by differences in the brain… There is usually nothing about how people with ASD look that sets them apart from other people, but they may communicate, interact, behave, and learn in ways that are different from most other people.

This definition is expanded by the National Institute of Mental Health (2013), which states:

Autism is a group of developmental brain disorders, collectively called autism spectrum disorder. The term “spectrum” refers to the wide range of symptoms, skills, and levels of impairment, or disability that children with ASD can have. Some children are mildly impaired by their symptoms, but others a severely disabled.

The two previous definitions offer general insights to the impairments, but they are limited in specifying characteristics. In the DSM-5, the APA (2013) defines ASD in the following terms:

Autism spectrum disorder is characterized by persistent deficits in social communication and social interaction across multiple contexts, including deficits in social reciprocity, nonverbal communicative behaviors used for social interaction, and skills in developing, maintaining and understanding relationships. In addition to the social communication deficits, the diagnosis of autism spectrum disorder requires the presence of restricted, repetitive patterns of behavior, interests or activities. Because symptoms change with development and may be masked by compensatory mechanisms, the diagnostic criteria may be met based on historical information, although the current presentation must cause significant impairment.

For the purposes of this study, the American Psychiatric Association (APA) definition will be applied. It appears to be the most inclusive and is considered the standard for diagnosis and research

The History of ASD

         The history of cases of individuals with observed expressions analogous to ASD date back as far as 1806. At that time they were considered cases of insanity (Wolff, 2004). The evolution of ASD (aka autism) began in 1943 – 1944 when two different researchers, Leo Kanner in Baltimore, Maryland, U.S. and Hans Asperger in Vienna, Austria separately described cases of children who presented symptoms similar to those of schizophrenia (Barthélémy & Bonney-Brilhault, 2013). Both researchers identified the symptoms as “autism” because it was a term used to describe schizophrenic individuals who withdrew from reality (Barthélémy & Bonney-Brilhault, 2013). Kanner’s description of children with autism was that they, “have come into the world with innate inability to form the usual, biologically provided affective contact with people” (Wolff, 2004, p.203). Both Asperger and Kanner’s observations included stereotypic behaviors, poor emotional and social interactions, lack of empathy and poor body coordination (Wolff, 2004). At that time, Kanner postulated that autism and childhood schizophrenia were caused by distant parents (Kanner, 1949), which popularly became known as “Refrigerator Mothers”. It was not until two decades later that researchers focused on developing more sensitive diagnostics demonstrating that autism did not directly relate to schizophrenia or to poor parenting (Bailey, Phillips & Rutter, 1996; Folstein & Rutter, 1977; Rutter, 1968; Rutter, 1970). Since the early 1970’s, there have been academic journals reporting on expressions of autism. It has become commonly referred to as ASD, and to date there are four journals dedicated entirely to ASD. In the 1990s an increasing number of parents and advocates emerged and led cultural, political and attitudinal change toward ASD in the U.S.