Feature Issue on Employment and IDD

Like the more recent evolution from sheltered workshops to competitive, integrated employment, day habilitation services for people with intellectual and/or developmental disabilities (IDD) have been experiencing a simultaneous shift from facility-based programs to integrated, community-focused models. Facility-based day programs were initially developed as a result of the deinstitutionalization movement of the mid-20th century, when large institutions began to close and there was a need to create alternative, community-based services for people with disabilities. At that time, societal attitudes often viewed people with disabilities as needing protection and care in separate environments, away from the general public. Programs were designed to keep people safe and occupied but often resulted in isolation from the broader community and all its opportunities.

Day services and vocational services for people with IDD have traditionally operated in separate tracks, often with limited coordination between the two. Day services and employment may have been managed by different teams, funded through different sources, and pursued with distinct goals in mind. As a result, people might have engaged in day services that didn’t directly connect to or prepare them for employment, while employment services may not have considered the broader context of a person’s daily life and community involvement. This separation has limited the ability of both services to fully support people in achieving their overall life goals, particularly when it comes to integrating employment with community life engagement.

In recent decades, several key U.S. policies and pieces of legislation have helped create a shift away from these facility-based models of support in day and employment services for people with disabilities. The Americans with Disabilities Act (ADA) of 1990 established a legal framework by prohibiting discrimination against people with disabilities and promoting their integration into all areas of public life, including employment and community services. The U.S. Supreme Court Olmstead v. L.C. decision in 1999 further reinforced this by ruling that people with disabilities have the right to receive services in the most integrated setting appropriate to their needs, challenging the long-term reliance on more segregated, center-based programs.

The Workforce Innovation and Opportunity Act (WIOA) of 2014 emphasized competitive integrated employment as the preferred outcome for people with disabilities, pushing states to move away from legacy models such as sheltered workshops. The Centers for Medicare & Medicaid Services (CMS) issued the Home and Community-Based Services (HCBS) Final Settings Rule in 2014, which set forth requirements to ensure that services funded through Medicaid support people in fully integrated settings, and not isolated, facility-based environments. Since 2009, the Department of Justice (DOJ) has applied the ADA and Olmstead while investigating and addressing violations in various state systems. Earlier this year, the DOJ found that the state of Utah unnecessarily segregates adults and youth with IDD away from their communities. These policies and rulings collectively drive the national agenda toward greater community integration, reinforcing the rights of people with disabilities to live, work, and participate fully in their communities.

To meet these policy and societal shifts, organizations that provide day and employment services are changing approaches and embracing more holistic, community-based services that prioritize individualized, person-directed services. This holistic approach, which has existed for roughly 40 years, requires considering not just one area of a person’s life but looking at the whole person and all aspects of their life when planning and delivering services. It also means recognizing the interconnectedness of different supports and services, ensuring that they complement each other rather than functioning in isolation or siloes. This is especially critical considering the workforce shortages that affect disability support services. Limited resources mean organizations must be strategic and efficient about staff roles and eliminate duplication of effort where possible. By better coordinating services that support the same person, organizations can provide better outcomes and reduce strain on resources.

It’s worth noting that employment outcomes are generally easier to track than those associated with community life engagement. Employment outcomes are easier to quantify with things like hours worked, wages earned, job retention or job satisfaction. These are metrics that provider organizations and states can track and compare nationally to similar data for people without disabilities. Instead, the outcomes of community life engagement—how people, with and without disabilities, access and participate in their communities—are often more qualitative, emphasizing a person's sense of belonging, personal interests and skills, and the unique aspects of the communities they choose to be part of. These outcomes may be subjective and harder to quantify, making them more challenging to track consistently across different service providers and settings.

The Institute for Community Inclusion (ICI) at the University of Massachusetts Boston has been engaged in work and research related to employment and community life engagement for decades. ICI’s work has emphasized the importance of a holistic approach to community life, where activities such as volunteerism, post-secondary education, and community participation and membership are aligned with a person’s interests and goals as identified in their person-centered plan. This approach means that day services (and other non-work services) that support community life engagement must move beyond providing services that simply fill a person’s time during the day. This also means staff who support community life engagement must understand Employment First principles and values to ensure people of working age are supported to consider, explore, and pursue employment outcomes.

This approach, after all, is more like most people’s lives.

Community Life Engagement Guideposts

To support this work, ICI developed Community Life Engagement (CLE) Guideposts based on expert interviews with researchers, state and local policy makers, provider staff, management, self-advocates and family members. They are a set of key principles that states, and service providers can use to create and support high-quality outcomes for people. The four key guideposts include:

Individualize Supports: speaking to the importance of getting to know each person as a unique human with their own set of preferences, interests, and skills outside of the scope of paid services.

Promote Community Membership: stressing the difference between simply being present in community settings and actively participating and belonging there. This means ensuring that support staff does not unintentionally limit or inhibit relationships with community members. Supporting membership outcomes may require additional support or training for direct support professionals (DSP) who may have traditionally seen their role as that of a caregiver or group organizer.

Develop Relationships and Build Skills to Decrease Reliance on Paid Supports: community life is about more than just fun activities. It can provide an important avenue for learning skills that can support access to community and employment. As community connections are developed, it is important to encourage the use of already established support in the same way that often occurs in employment settings. For example, a person engaged in their chosen faith community may tap into transportation and support to participate in services by a fellow member of the congregation.

Provide Outcome-Oriented and Regularly Monitored Supports. This drives home the importance of keeping the focus on person-directed goals and satisfaction, instead of simply tracking scheduled activities. Keeping in mind the low employment rates for people with disabilities, it is important that provider organizations maintain focus on expecting employment outcomes for people of working age. Organizations can access the community life engagement toolkit, including an online fidelity scale tool . This self-assessment can help providers reflect on their policies and practices and how they align with the guideposts.

While there are not yet universally accepted metrics to track outcomes associated with CLE, these guideposts provide some potential starting points for consideration and ongoing discussion.

New and innovative day services are increasingly focused on creating flexible and individualized supports that align with the natural rhythms of community life, rather than adhering to a rigid 9 a.m.-to-3 p.m. program structure. This flexibility allows people to engage in activities during evenings or weekends, participate in community events, and explore interests that could lead to employment opportunities, all while being fully integrated into their communities. Such an approach not only enhances the quality of life for individuals with IDD but also opens pathways to meaningful employment by fostering connections and developing skills that are directly applicable in the workforce.

This vision and service delivery requires states and organizations to rethink the one-size-fits-all approach of more traditional center-based day services that often rely on standard weekday hours and group activities. These models have often artificially kept people out of their own homes during weekday hours, as opposed to individually connecting people to their community at large to reduce the need for paid support long-term. Instead, states and providers are considering how people might be supported to live lives with the same rhythms and routines as people without disabilities. Rather than spending the entire day at a provider-owned facility, an adult with IDD might spend the morning at home, work part-time in the afternoon, and join community activities with friends after work. This individualized approach allows for a more balanced and integrated daily routine.

These evolving models of day services also emphasize the importance of natural (or unpaid) supports and community connections in achieving employment outcomes. By fostering relationships within the community, individuals can build their personal networks, which could lead to job opportunities, volunteer positions, relationships or other forms of community engagement that support their career goals. This holistic approach ensures that employment is not seen as a separate goal, but as an integral part of a person's overall community life engagement. As states and providers continue to innovate, the integration of day services and employment supports will be crucial in achieving the broader goal of full community inclusion for people with IDD.

Along with service providers, state systems play an important role in supporting and funding CLE outcomes for people with IDD. As a companion to the four CLE Guideposts, ICI also developed a state agency self-assessment tool . The tool evaluates a state’s current strengths and areas needing improvement concerning CLE. It encourages states to reflect on their goals, barriers, and opportunities for advancing CLE. For example, it asks if the state IDD agency:

• emphasizes participation in activities that take place in typical community settings alongside community members without disabilities,
• ensures that service definitions allow for flexibility in scheduling and staffing patterns,
• ensures service definitions for services that support employment and community life engagement are written to encourage combining both in a person’s life, and
• collects provider outcome measures and use them to improve supports and guide decisions about priority areas for training.

As part of outreach and education, ICI UMass Boston partners with the University of New Hampshire and American Network of Community Options and Resources (ANCOR) on a project called Community Life in Action. Major activities include establishing a national CLE community of practice, conducting a “lunch and learn” webinar series for service providers to learn from each other's successes through storytelling, and fielding an e-newsletter using micro-learning strategies. The goal of this project is to transform and improve services in order to increase community life engagement for adults with IDD.