Feature Issue on Engaging Communities Underrepresented in Disability Research

Clear-language summary

Most people with disabilities want to work. Employment first policy says that all people with disabilities who want a job, should have one. These jobs should pay at least minimum wage, and offer chances for benefits like health insurance and paid vacation. Self-advocacy organizations have added that people should work at jobs that they chose and can lead to a career.

Unfortunately, many people with disabilities have trouble finding good jobs. While almost 74% of people without disabilities work for pay, only half as many people with disabilities are working. The numbers become lower for people with intellectual and developmental disabilities. More than half of the people who receive services through the government who are not working in the community said they would like a community job.

Finding a good job is even more difficult for people with disabilities who are from minoritized communities. Many are poor, making it difficult to wear the right clothes during job interviews or to be in social settings where they could hear about job openings. Sometimes, employers do not give people from minority races and cultures a chance to show everyone their talents. They are sometimes asked if they are citizens, and often do not feel welcome to use government programs and services that support people in their jobs. We need to support people with disabilities from under-resourced communities to be aware of and use these government services. We need to better understand what having a job means to them and which employment services will help most. We need to find out if employment services are actually helping people get good jobs.

Ajani Lewis-McGhee at work in his community. Read his article A Job to Finish.

People with disabilities, particularly people with intellectual and/or developmental disabilities (IDD), generally have very limited access to employment, and the data show a multiplier effect among workers with disabilities from historically marginalized communities. Less is known, about how and why these disparities persist.

We lack a common language for employment in the disability field. Competitive integrated employment (CIE), to many of us, is an individual job in the competitive labor market. That is not what all people mean when they talk about employment, complicating these conversations. Understanding what a valued employment outcome is means listening to advocates and going beyond the term CIE. Members of Self Advocates Becoming Empowered and Green Mountain Self Advocates worked with us to build a plain-language version of The Association of People Supporting Employment First’s policy statement . They said employment first policies are working when people earn minimum wage or higher, have jobs with benefits, and own and run businesses. More important, when people work at a job they choose, get promoted, and build careers. Liz Weintraub, who was part of our State of the Science working group on employment, emphasizes the importance of thinking about careers and not just jobs, but the data on employment doesn’t go this deep. What a career path means from an individual's perspective, based on their culture and context and their goals and timelines, is important to know.

Most states have some sort of Employment First policy that establishes employment as the preferred outcome. We know broadly how many people are employed, and mainstream national data often focus on the unemployment rate, but because so many people with a disability have become discouraged and stopped looking for work, it is less useful. Looking instead at how many people are working, the disparities are huge, even when focusing on disability and leaving out all other personal characteristics. Almost 74% of people without a disability work for pay, according to the American Community Survey (ACS). It's roughly half that for people with any disability, and it drops to 30% for people with a cognitive disability, according to a 2019 report on employment services from the Institute for Community Inclusion.

And individuals with IDD who receive services from a state IDD agency are even less likely to work. The National Core Indicators (NCI) project indicates that only 14% of people supported by state IDD agencies worked in a community job in 2020-2021, down from 22% in 2018-19.

Family, culture, language, and poverty status are also important contextual factors. There's a strong relationship between disability, work, and poverty. People with disabilities are much more likely to live in a household that is below the poverty line, and are less likely to work. According to ACS data, 10% of people without disabilities live in a household that is below the poverty line. That figure jumps to 24% for people with any disability, and 28% for people with cognitive disability.

Poverty affects job seekers’ networks, their flexibility to get to a job interview, and ability to wear appropriate clothing.

Factors including race, culture, ethnicity, and gender have a multiplying effect. For example, average annual earnings, employment overall and in community jobs, and rehabilitation rates, are all lower for Black workers with disabilities, compared with white workers with disabilities, according to ACS, NCI, and the Rehabilitation Services Administration (RSA).

A 2020 Institute for Community Inclusion report found similar patterns across racial and ethnic groups:

• Individuals with a disability who are Black or Native American are less likely to work and they earn less if they do work (ACS).
• Individuals who are Black, Native American, Native Hawaiian, or Hispanic are less likely to receive vocational rehabilitation services after application and are less likely to be employed following VR services (RSA).
• Individuals with IDD who are Black, Asian, or a Pacific Islander, or who identify as Hispanic, are less likely to work in integrated jobs (NCI).

One of the most telling pieces of data about people who receive services from state IDD agencies tells us that half of people who aren’t working in the community want a community job. In 2020-2021, 51% of people who didn’t have a community job said they wanted one, and that number has been consistent. But again, Black and white respondents had different experiences. People receiving IDD services who are Black are less likely to work, but they also are more likely to want a job if they are not working in community settings.

There are a few emerging qualitative research studies in the area of transition from school that are useful in studying people’s experiences within the contexts of their communities.

When Courtney Wilt of the University of Kansas and colleagues interviewed 36 family members with diverse racial and cultural identities, including low-income and rural white family members, it was striking how infrequently people felt that school played a significant role in preparing their children for adulthood. Low expectations, a well-known issue in disability circles, was an even stronger issue in families who reside in under-resourced communities. Families reported limited opportunities for career development and work-related experiences, often because it was so punishing dealing with the schools or the adult support system. Some families compensated by using the power of personal capital and community relationships that respected who they were, and this resulted in some positive outcomes.

In a study exploring experiences of caregivers supporting family members with disabilities, Grace Francis and colleagues talked to family members from Hispanic households about their experiences leading to their distrust of educators. Poor transition planning was discussed, as were factors specifically related to families from underserved communities. The overwhelming nature of our systems and the discomfort people feel in trying to operate within them was significant. Language barriers and lack of federally mandated interpreters and translation supports, along with microaggressions experienced along the way, complicated everything. Families reported being questioned about citizenship and eligibility as something that pushed them away from needed services, to which they were legally entitled. Families reported a lack of respect for cultural differences. Those with a strong cultural focus on interdependence, for example, encountered conflicts with the education and service system’s emphasis on independence.

Families, particularly those in poverty or working in low-wage jobs, struggled to maintain regular communication with schools and attend individualized education plan meetings. This resulted in individuals and families having limited information about available resources.

In general, the transition literature says individuals and families have limited information about resources and supports, but racial and other barriers exacerbate the problem, leaving many unanswered questions.

As we phase out of subminimum wage and older models of employment and other day services, we need research on people’s experiences and outcomes. Are people’s lives better with competitive employment?

Building off of Tawara Goode’s Disparities and Disability Framework, we need to develop measures and build awareness by recognizing and understanding the many ways individuals with IDD from marginalized communities experience differences in access, availability, acceptability, quality, and utilization of disability services.

In her Convergence of Cultural Contexts framework, Goode explains that each of the many systems people have to deal with has a different culture and expectations and process. Achieving employment requires engaging with multiple systems, including education, vocational rehabilitation, and IDD services; and managing income supports and health benefits.

We have a long way to go to make employment an expected outcome for people with disabilities, and people with IDD from historically marginalized communities face substantial additional barriers to securing and thriving in competitive employment. As a field, we have a lot of work to do to create strategies for removing those barriers.