Feature Issue on Employment and IDD

Clear-language summary

Having a competitive community-based job can help people with IDD to be part of the community. From 2017 to 2021, the number of people working in sheltered employment decreased from 19% to 12%, but the number of people working in a competitive community-based job only increased from 20% to 22%. Competitive jobs in the community pay the same wages and have the same tasks and benefits for all workers, whether or not they have disabilities.

Systems need to change so more people have the opportunity to work in community-based jobs. Agencies that support people with IDD in the area of employment must play a key role for this transition to be successful. This requires designing new ways to provide services that can support people both in completing work tasks and making connections with coworkers.

State systems that fund employment services also need to be supportive in making the necessary changes. Recruiting and retaining an adequate supply of DSPs is critical to these efforts, and also challenging given the current labor market. A few promising practices include assisting coworkers to act as natural supports as they become comfortable and using technology to support people to be more independent in their work.

Work is an extremely important part of most adults’ lives. For many people, work provides their main source of income and access to benefits such as healthcare and retirement plans; for some, work also provides a sense of purpose, structure in their days, and opportunities to connect with other people. Many people with disabilities do not benefit from these advantages because they face significant disparities in employment. Fewer than one in four people with disabilities were employed in 2023, according to the Bureau of Labor Statistics, compared with nearly two-thirds among people without a disability. Among people aged 16 to 64, 37.1% of people with disabilities were employed, far less than the 75% among people without disabilities.

About 24% of adults with disabilities live in poverty, compared with 11% of adults with no disability, according to U.S. Census data reported in the StateData employment report , which is produced by ThinkWork! at the Institute for Community Inclusion at University of Massachusetts at Boston.

For people with intellectual and developmental disabilities (IDD), the setting where they are employed can have just as much effect on their quality of life as their employment status. When institutions began closing in the mid-20th century, family members and others established sheltered workshops to provide employment for people with disabilities. These workshops are largely segregated, and workers often complete simple tasks for less than minimum wage. Some workshops added group employment options such as work crews and enclaves, in which people with disabilities work in groups with other people with disabilities and their support staff in community businesses. Often, facility-based and group employment offer few opportunities for individualized careers paying competitive wages, also known as competitive, integrated employment. Competitive, integrated employment, as defined by the U.S. Department of Labor, means the person makes at least minimum wage or wages comparable to others in the same position, receives the same level of benefits provided to employees without disabilities, interacts with employees without disabilities, and is presented opportunities for advancement similar to employees without disabilities. Facility and group employment models remain popular throughout the United States today, despite the clear evidence that competitive, integrated employment leads to an increase in community integration, social belonging, and personal independence, as well as increased wages and hours worked.

Source: Institute for Community Inclusion

“Research on the efficacy of [supported employment] in leading to [customized, integrated employment] outcomes is strong, with demonstrated success using the highest levels of methodological rigour,” Joshua Taylor and colleagues wrote in a 2022 article published in the Journal of Applied Research in Intellectual Disabilities.

Policymakers and advocates have pushed for decades for more opportunities for people with disabilities to pursue competitive, integrated employment. State and federal rulings, policies, and laws enacted over the past 25 years and the advocacy efforts of people with disabilities have resulted in many states taking seriously the need for systems change to focus on competitive, integrated employment rather than legacy models of support such as facility-based and group employment. These efforts have been reinforced in recent years by advocacy at the federal and state levels to end subminimum wages for people with disabilities and the temporary closures of center-based services during the COVID-19 pandemic.

Despite these efforts to increase employment outcomes, progress has been slow. From 2017 to 2021, the percentage of people receiving day or employment services who were in facility-based employment decreased from 19% to 12%, according to the StateData report . The percentage of people in integrated employment only increased from 20% to 22% over that same period, however. There is an obvious question that arises from this data: What is happening to the people who leave facility-based work if they are not successfully shifting to competitive integrated employment? The data suggests many are leaving employment altogether.

Over the past 35 years, the UMB-ICI’s Access to Integrated Employment project has gathered data showing a steady increase in people accessing facility and community-based non-work day services as opposed to facility-based or integrated employment services. This is a problem, because many people with IDD who are not working would like to be working. Data collected by National Core Indicators (NCI) consistently shows that among people with IDD who do not currently have paid employment, almost half want a job. A significantly smaller percentage of those people actually have a goal for employment in their service plan, however. This highlights the critical role that case managers can play in ensuring people with IDD have continued access to explore and pursue competitive, integrated employment.

As states continue to explore the phaseout of sheltered work models, this data trend highlights the need to focus not just on improving employment services, but also on redesigning or enhancing non-work day services at the same time. These services are often provided by the same organizations and rely on many of the same resources.

Instead of thinking about work and community life engagement as mutually exclusive, there is an understanding that having a job can help people build their social connections, gain a sense of purpose and increase their independence, all of which can contribute to a more robust community life. By the same token, people being active in their community through volunteerism, participating in social activities or joining local groups can help people develop skills, build networks, and gain experiences that may improve their chances of finding and keeping a job.

That brings us to this moment, when policymakers and advocates are recognizing that focusing on reducing facility-based employment and ending subminimum wages does not, on its own, get people jobs. State systems and provider organizations must be focused on what they are building in regard to new service models and provision of best practices, not just on what should be ending. This includes building holistic service systems that support and promote both competitive integrated employment and community life engagement. State agencies that fund employment services for people with IDD are engaging in systems change with that charge in mind. The High-Performing State Framework, developed by the State Employment Leadership Network (SELN), identifies key elements that are crucial for developing and sustaining integrated employment systems for people with disabilities. Elements include leadership, policy and goals, performance and data measurement, service innovation, training and technical assistance and financing. All of these elements are underpinned by the need for robust interagency collaboration.

A 2022 joint letter from the Office of Special Education and Rehabilitative Services (OSERS), the Office of Disability Employment Policy (ODEP), the Administration for Community Living (ACL), and the Substance Abuse and Mental Health Services Administration (SAMHSA) also echoes this call for interagency collaboration and emphasizes the importance of maximizing opportunities for community engagement. The letter calls for collaborative and coordinated planning and delivery of services that support personal interests and goals, keeping individuals on the path to competitive, integrated employment. This framework highlights the need for a comprehensive approach to service delivery that prioritizes both employment and community life engagement.

Employment service providers must play a key role in the systemic shift from facility-based and group employment to competitive, integrated employment; it is their role to change how services and supports are delivered in practice. Some providers are responding to the drumbeat of change from policy, advocates, and the younger generation of people with disabilities who expect more opportunities to pursue their interests, use their skills, and make a living wage. Across the country, service providers are taking on ambitious organizational changes to better align their service models with best practices to increase competitive, integrated employment outcomes, such as customized employment.

For employment service providers, the concept of pairing competitive, integrated employment with community life engagement is fairly new. This more holistic approach, with employment at the center, means designing non-work day services not just to include activities meant to occupy a person’s time, but as a part of a broader strategy to help people achieve their life goals, including both employment and community life engagement. To truly support this integrated approach, it’s essential to embed Employment First values (the vision of making employment the first and preferred outcome) within all aspects of service delivery, including non-work day services. This ensures that staff and leadership providing those services clearly understand their role in setting high expectations and a vision for employment for people of working age.

Source: Hall et al (2007)

Addressing the rise in non-work day services requires a fundamental shift in how employment service providers view and deliver day supports for people with disabilities. By recognizing the interconnectedness of employment and community life engagement and adopting holistic, person-centered approaches, service providers can create service models that truly empower individuals to live full, meaningful lives. Many service providers have done the hard work of evolving their practices, culture, and infrastructure to align with the goals of Employment First, but many others still have this work ahead of them. As providers, policymakers, and advocates, the focus must be on building new service models that integrate best practices and support people in achieving their personal and professional goals.

Efforts to transform entrenched state systems and established provider organizations often prove to be complicated and challenging. Changing existing models of funding and financing, transitioning infrastructure, accessing staff training resources, and resistance to change from direct support staff, agency leadership, case managers, family members, and people with disabilities themselves are all barriers to transformation. One of the biggest challenges for enacting transformation is the nationwide shortage of direct support professionals. Many providers struggle to have enough staff to provide daily supports for people and do not have the additional capacity to take on a comprehensive organizational transformation.

While there is no indication that the direct support workforce crisis will ease anytime soon, more providers are adapting practices that could help relieve some of the workforce pressures. As technology continues to rapidly evolve, things like wearable devices, artificial intelligence, remote supports and customized apps may enable greater independence for people with disabilities, as well as their support staff, ultimately freeing up limited resources that can be used in other ways. Providers are increasingly recognizing the benefits of building natural supports (i.e., support from coworkers, managers, and technology) for people with disabilities in the workplace and fading formal supports once the person becomes confident in their role. This increases independence and community inclusion, and helps providers use their stretched workforce more efficiently. Since the COVID-19 pandemic, remote supports have become a standard offering of provider agencies. They increase accessibility for some people with disabilities and can cut down travel time for employment staff who can do a video call with a jobseeker or employed person rather than an in-person visit. This particularly helps staff living in rural communities who serve a large geographic area. Artificial intelligence is another tool that employment staff are beginning to adopt. ChatGPT and similar tools are helping some providers streamline some aspects of their work, boosting efficiency. Maintaining momentum in the push for competitive, integrated employment is crucial because it ensures that the progress already made continues to expand. Reaching more individuals with disabilities and providing them with opportunities to work and participate in community life in the same ways as people without disabilities will stall without sustained efforts, leaving many individuals in outdated service models that do not fully support their potential.

Job Match Makers: Minnesota Transformation Initiative

The Job Match Makers Podcast , a partnership between the University of Minnesota’s Institute on Community Integration and University of Massachusetts Boston’s Institute for Community Inclusion, shares stories from employment consultants about supporting people with intellectual and developmental disabilities to find employment in their communities—one person, one job at a time.