Families Creating Employment Opportunities for Individuals with Developmental Disabilities

Understanding the Contribution of Familial Entrepreneurship

Jennifer Percival

• Publisher: Routledge
• Year: 2021
• Print ISBN:
  9781032036847
• eBook ISBN:
  9781000413243
• Topic: Éducation
• Subtopic: Éducation générale

This volume provides an in-depth, qualitative exploration of familial entrepreneurship as an innovative employment model, being established by families in response to difficulties faced by individuals with developmental disabilities in entering the labor market.

Drawing on rich qualitative data collected via research with families, this volume explores how and why familial entrepreneurs in the United States have chosen to develop businesses to employ their loved ones. Chapters offer close analysis of the challenges and opportunities associated with familial entrepreneurship and highlight the ways in which this practice supports people with developmental disabilities by providing opportunities for skill development, social interaction, and participation in meaningful activity. Recognizing familial entrepreneurship as a new and distinct hybrid employment model, the text goes on to consider how curricula, policy, and state services might better support families and underpin this form of inclusive work.

The volume provides important conclusions that contribute to the fields of Disability Studies, Entrepreneurship, Inclusive Education, Adult Education, Exceptional Student Education, Transition, and Vocational Rehabilitation. It is a key reading for scholars in these fields and across Education more widely.

1The Unemployment Experience for Individuals with Developmental Disabilities

I can tell you right now nobody would give him a job. It's just not going to happen. Nothing he would want to do anyway.

This chapter will explore the unemployment situation for individuals with developmental disabilities, delving into the reasons why this group has limited work opportunities in traditional employment settings. Data will be reviewed, including the US Census and ARC FINDS Survey, approximating that the unemployment rate for this population is between 75% and 90%, showing how this group is widely underrepresented in the typical workforce. An explanation of how beliefs and overgeneralized negative assumptions made about the abilities and the potential contribution of individuals with developmental disabilities create a significant barrier to work will be reviewed. This chapter will delve into the importance of employment, including the conceptual framework for why jobs matter. The consequence of unemployment will be reviewed, and the governmental services intended to support employment outcomes for people with disabilities will be explained. Definitions of employment options will also be provided.

Disability Rates

The Centers for Disease Control (CDC) of the United States (2015) defines developmental disability as “a group of conditions due to an impairment in physical, learning, language, or behavior areas” (p. 1). The onset of a developmental disability occurs during the stages of childhood development. Braun et al. (2015) suggest that “developmental disabilities are a group of chronic conditions attributable to a physical or mental impairment which may result in functional limitations often requiring life-long coordinated, interdisciplinary services and supports” (p. 2). One in six children in the United States has a developmental disability, of which the CDC considers a diagnosis of one or more of the following: Attention deficit hyperactivity disorder (ADHD), autism spectrum disorders (ASD), cerebral palsy, hearing loss, intellectual disabilities, learning disabilities, and vision impairment (CDC, 2015).

Why Does Employment Matter?

Employment is a more complex experience than a route to an income. A familial entrepreneur (FE) shared support for this idea: “For my guys right now, the paycheck is the most minimal part of it. It's the purpose.” The act of being employed offers opportunities for skill development, self-exploration, enhancing proficiencies and competences, and even discovering unknown talents. It provides a chance to apply dreams about the future and to grow. Employment also offers a social outlet where people can connect with both their colleagues and the community, building relationships and practicing social skills in the real world. Employment is a chance to be away from home, to become an independent adult, even if only for the time at work, or while navigating the transportation to and from a job. Employment can mean financial security for the immediate future and for long-term plans. Benefits that often come with employment include health insurance, recreational activities, and even support to continue or expand on education. Employment is more than income, it facilitates effective belonging and inclusion, and provides purpose. Employment is a path to self-discovery and opportunity, and a concept grounded in human rights.

Employment and Human Rights

Some may believe that complete inclusion is radical or even a utopian-esque objective. That every person will not only be accepted and integrated into society, but that their uniqueness will be celebrated and honored. To better understand the challenges of inclusion, we look back to the moments and movements in history when individuals had deep beliefs and acted in the face of oppression. These activists used their voices to demand to be heard. Civil rights movements intended to shift the idea that “darkness turns the world off” and strive to change personal beliefs by bringing light, with the hope to alter and improve societal attitudes and behaviors (Van Manen, 2003, p. 163). When hearing these voices, we can look to Anne Frank's (1967) words which are a symbol and a reminder of how even the voice of one can hold a space of hope for change while facing oppression and persecution:

It's really a wonder that I haven’t dropped all my ideals, because they seem so absurd and impossible to carry out. Yet I keep them, because in spite of everything I still believe that people are really good at heart. I simply can’t build up my hopes on a foundation consisting of confusion, misery, and death. I see the world gradually being turned into a wilderness, I hear the ever-approaching thunder, which will destroy us too, I can feel the sufferings of millions and yet if I look up into the heavens, I think that it will all come right, that this cruelty too will end, and that peace and tranquility will return again. (Frank, 1967, p. 273)

When we compare Ann's words from the past to the current words that the United Nations (UN) uses to define human rights, we can see her hope in this larger entity, supporting her ideal of peace and tranquility, as well as equality:

Human rights are rights inherent to all human beings, regardless of race, sex, nationality, ethnicity, language, religion, or any other status. Human rights include the right to life and liberty, freedom from slavery and torture, freedom of opinion and expression, the right to work and education, and many more. Everyone is entitled to these rights, without discrimination. (UN, 9/10/2020)

In 2006, the Convention on the Rights of Persons with Disabilities indicated some movement and change of perspective from a lens of goodwill and tolerance to one that included the rights of people with disabilities. These rights encompassed employment and the ability to seek work that aligns with one's interests and abilities. The then, UN High Commissioner for Human Rights, Louise Arbour said, “The celebration of diversity and the empowerment of the individual are essential human rights messages. The Convention embodies and clearly conveys these messages by envisaging a fully active role in society for person with disabilities.” UN Rights and Disability (9/10/2020, https://www.ohchr.org/EN/Issues/Disability/Pages/DisabilityIndex.aspx).

The Convention works to expand the definition of “all,” to be inclusive of people with disabilities, and that they, as the rest covered by that spirit, are entitled to rights.

Van Manen (1990) offers hope in support of human rights across his works. He shares that “the world of becoming is the one in which we become ourselves; the world where our understanding, expression, and creation takes place; the particularly human world in and through which we become more human” (Van Manen, 2003, p. 132). Newfound acceptance can come from innovation as it confronts discrimination: a type of radical inclusion, almost a revolution. The larger hope being societal change. Freedom through this type of transformative learning does not necessitate an understanding necessarily, but at least a supportive theory of mind approach that all are unique, but have equal rights. There is a “focus on the experience itself and how experiencing something is transformed into consciousness” (Merriam & Tisdell, 2015, p. 24). Kegan and Lahey (2001) examine how people struggle with the act of confrontational behavior. The authors identify the concept of competing commitments as the source for the resistance. An example they provide is of people who are attached to attitudes that ultimately get in the way of progress. They reveal that people themselves are their own worst enemy and that getting to the root of what is competing is necessary before growth can occur. This process is difficult and requires time to mature.

The communal process of transformation, which includes the voices of all representatives, is part of developing “an environment where no one is advantaged or disadvantaged, where we is everyone” (Thomas, 1990, p. 109). Mezirow's (2000) transformational learning strategies suggest the place to begin is to “shift preconceived assumptions and biases about issues related to diversity” (Young, Mountford, & Skrla, 2006, p. 266). A consideration then is that the businesses in this study may have been created, in part, because society was not prepared to change without these trailblazers, without successful examples to lean on, without evidence that the impossible is possible. The efforts of these businesses, then, are an act of protest, an action of asserting the necessity of human rights, a shout into the world saying that yes, it can be done.

People with developmental disabilities continue to encounter threats to their human rights in the employment sector. This prevents them from partaking in and contributing to the traditional workforce. They experience barriers from the application and interview process to onboarding at a business, transitioning into the position, and receiving the necessary supports and assistance to be both initially successful, and to maintain that success. Without this access, their rights to self-determination are not only diminished, but threatened long-term.

In his letter from Birmingham Jail, Dr. Martin Luther King, Jr. (1963) emphasized how leaders can be foundational change-makers. He suggested that “we have not made a single gain in civil rights without determined legal and nonviolent pressure. Lamentably, it is a historical fact that privileged groups seldom give up their privileges voluntarily” (King, 1963, p. 81). Opening doors with action sometimes requires pressure to the system which may not always be well received.

The FEs in this study are opening these doors and breaking ground by demanding that their relatives be included even if that means they must commit their own lives to that objective. The families are at the birth of the transformational process. As such, inclusion through this new form of work, for people with developmental disabilities, is in an emancipatory phase, and “liberation is thus a childbirth, and a painful one. The man or woman who emerges is a new person” (Freire, 2000, p. 49). In this case, the FEs are a group of people emerging in new places and in new ways. The creation of businesses may cause labor pains and uncertainty for the traditional workforce who struggles to understand the purpose or impact these businesses offer. It is very challenging to see the potential outcomes at the start of the business. This research will help examine and describe the groundwork along with documenting the birth process of these businesses, supporting an easier, or at least, less unknown pathway for those who follow, and a place to look back from the future.

Unemployment Rates

The rate of unemployment for people with disabilities as reported by the US Bureau of Labor Statistics for 2019 is 7.3%, which is double the rate for people without disabilities. Individuals with developmental disabilities and those who require more support, needing additional accommodations, are less likely to be employed than other individuals with disabilities. People with developmental disabilities have limited access to work opportunities in a conventional employment setting. Overgeneralized negative assumptions and preconceived attitudes made about the potential contribution and the abilities of individuals with developmental disabilities ultimately create an invisible, but significant barrier for this population to obtain and maintain work. This barrier frustrates families. One FE shared:

I think the parent community, if given the right resources and the right information could really do a wonderful job influencing for the companies that they work for to employ people with Autism. The reason that I believe that hasn’t happened so far is because there are very few people that really understand the breadth and depth of the advantages of employing people with Autism.

Obtaining employment is more difficult for this group, and it is important to understand the challenges. Examining the unemployment statistics is important, but it only paints a part of the picture. Most unemployment data is not disaggregated to effectively capture the unemployment rate for specific disability groups. Therefore, the statistics tend to be delayed, as they are further examined years later, or they are obtained in alternative ways, through self-report or surveys. The 2010 US Census indicates that 19% of the general population has a disability, and that “41% of those age 21 to 64 with any disability were employed, compared with 79% of those with no disability” (US Census, 2012, para. 5). The National Core Indicators (2014) data reveal that only 16% of people with developmental disabilities are employed in a community setting. The Arc FINDS Survey examined employment rates for people with developmental disabilities and found that 85% of individuals were not employed (The Arc, 2011). When comparing this data to the current population survey from 1998, which does not disaggregate the data for specific disabilities, there is not a great change in employment outcomes from then to now, when “only 30.4% of those persons with disabilities between the ages of 16 and 64 were in the labor force” (Blanck, Sandler, Schmeling, & Schartz, 1999, p. 3).

When we started to our homework and understand really what we were trying to solve, or the problem we were trying to solve, it became very apparent within two months of research that there was a 0% chance that my brother was going to find employment. We 100% have to take action with as much confidence as we can, because this isn’t going to get solved without our intervention.

The US Bureau of Labor Statistics indicated that in 2013, 17.6% of people with a disability were employed compared to 64% without a disability. Unemployment rate for people with a disability was 13.2% in 2013, with a rate of 7.1% for non-disabled people (US Department of Labor, 2016). In 2014, non-disabled youth aged 16–19 had a 29.9% rate of employment, while their peers with disabilities had an employment rate of only 16.6% (USDOL, 2015). In Palm Beach County, the home of this author, the December 2014 unemployment rate was 4.8% compared to 5.4% for the state of Florida, suggesting that employment was available in the region (CareerSource Palm Beach, 2018). In 2014, Vocational Rehabilitation (VR—an agency providing employment services for people with disabilities) served approximately 3,500 clients in Palm Beach County. This level of usage suggests that despite a low unemployment rate, many individuals with disabilities were seeking and utilizing government-funded support services for employment.

The literature supports the data we are able to obtain. Ridley and Hunter (2006) suggest that in the workforce “we have known for some time that those with the most severe disabilities are generally under represented” (2006, p. 67). Wehman, Chan, Ditchman, and Kang (2014) suggest that “there is an urgent need to employ effective intervention strategies to mitigate barriers and facilitate successful employment outcomes for young adults with Intellectual and Developmental Disabilities (IDD)” (p. 296). One of the FEs supports this and believes that, “Most of these jobs are for much higher functioning young adults that can work independently and even get there independently.”

Employment for Individuals with Disabilities

Well, we had been looking for a business for my daughter. She was 24. She had two years of doing nothing, pretty much, and I was paying someone, a teacher, to shadow her during the day, to help her volunteer in her previous high school to deliver mail, and was paying because they wouldn’t pay, so I was paying this teacher. I was basically working just to pay for all these things, but she was really bored, so we knew we needed something, but I didn’t want to do food. I didn’t want to deal with all the restrictions on food. I wanted something that we could do out of the home, that she could do.

Employment for individuals with disabilities is important. Without work opportunities, some parents try to emulate what employment might offer their loved one. This is not always successful. Having a job is a positive experience for people with disabilities because working supports “self-esteem, confidence, independence, social inclusion physical and mental health, sense of identity, and quality of life” (McGlinchey, ...

Table of contents

• Cover
• Half Title
• Series Page
• Title Page
• Copyright Page
• Dedication
• Contents
• List of Figures
• Author Bio
• Preface
• Introduction
• 1 The Unemployment Experience for Individuals with Developmental Disabilities
• 2 National Pilot Study and Approaching the Research
• 3 Case Studies
• 4 Commonality and Differentiation
• 5 Familial Entrepreneurship
• 6 The Impact of Familial Entrepreneurship
• 7 How Can This Process Improve? What Is the Future of Familial Entrepreneurship?
• 8 Considering Familial Entrepreneurship During the Transition Process
• 9 Conclusion
• References
• Index