Feature Issue on Crisis Management for People with Intellectual, Developmental, and Other Disabilities

This article explores the impact of the COVID- 19 pandemic on employment and day services funded and monitored by state developmental disability systems. Also noted are insights on emerging alternatives in service delivery that meet the needs and expectations of service users, their families, as well as providers and state systems that support them.

The pandemic has affected every corner of the world, every industry, and all population groups. The impact on developmental disability provider networks, particularly in the delivery of employment and day services, has been devastating. All but a handful of states closed their facility-based employment and day services in spring of 2020. Those who remained open deliver services at reduced capacity. Employment and day services providers were often encouraged to develop collaborative relationships with residential providers in their shared service area to “loan” or “transfer” direct support staff to address labor shortages in residential service settings, but this took professionals out of their areas of expertise in providing meaningful life skills development or job skills coaching. In addition, people with intellectual and developmental disability (IDD) who had secured competitive employment through these providers suffered substantial job losses.

Providers who were able to stay agile and offer multiple modes of service delivery have been most successful in weathering the pandemic.

Based on responses to a national survey of organizations conducted by The Association of People Supporting Employment First (APSE), day services – more than any other service type – have been impacted by the public health emergency and shutdown of congregate settings. Of the 280 responses to a question about whether they closed a service in response to the pandemic, 26% reported closing customized employment services, 51% reported closing facility-based day habilitation services, and 44% reported furloughing or laying off staff.

Providers that did continue to operate facility-based services are operating at reduced capacity to address the need for social distancing. Additional costs are being born in managing enhanced cleaning and transportation protocols to alleviate the potential transmission of COVID -19 while managing with decreased income.

Despite the challenges, there is energy being created by innovations that many employment and day service providers are implementing.

Expanded settings. Federal and state agencies have adjusted service delivery requirements. This allows flexibility to assure continuation of needed services and mitigate COVID -19 risk for those who previously received employment and day services in group settings. Thirty-nine states allowed providers to deliver employment and day services in expanded settings, with several states allowing typical day service delivery in private homes and residential settings during the public health emergency.

Virtual services. Technology has become a lifeline, transforming day-to-day operations for providers and the lives of those they support.

Telehealth has expanded beyond medical services to include delivery of employment and day services. Employment and day services are reaching people through telephone, virtual and remote modes of communication. As the pandemic has lingered, remote and virtual services have expanded and individuals are demonstrating capacity to interact and learn in these virtual environments in an unanticipated way. Families are adjusting to having their family members use virtual services.

Enhanced individualization. Pivoting to a remote workforce and telehealth as a major part of service delivery required a shift to more individualized employment and day service models and a move away from a facility-based program model. Strategies ranged from providing limited but individualized in-person supports to designing a menu of virtual experiences that participants could choose to attend based on interest. Successful organizations invested considerable time in curriculum and activity development. In many cases these activities mirrored facility-based learning experiences, but in other cases they established more community-centered experiences, such as remote opportunities for job exploration and participation in inclusive community experiences such as exercise or art classes. While many services, including person-centered career planning, are more effective in person, a virtual approach supports engaging key supports like distant family members in the discovery and job search process.

On the job, the use of technology allows for less intrusive workplace support, and for support designs that are available on demand rather than scheduled. For example, an individual can reach out immediately by phone, video chat, or text if they have a work question. On- demand supports and remote monitoring are effective strategies for community living, and they now have the opportunity to be more widely used as employment supports.

Supported decision-making. Individualization also emphasizes the need for every individual and those in their households to make decisions about the risk and benefits of returning to work or other activities in the community. This has created heightened awareness of the importance of assuring individuals have all the information they need to make informed decisions about the type of service delivery they wish to receive. The experience of making those decisions and selecting from a menu of options during the pandemic has the opportunity to be a pathway to a different approach to planning for a life and supports.

Individual Integrated Job n=10,420; Group Supported Employment n=2,780

State Employment Leadership Network. Data were collected between May and July 2020 from employment providers in Alabama, Georgia, Illinois, Maryland, Missouri, Rhode Island, and Virginia.

Employment during the pandemic

Supporting competitive, integrated employment has been a particular challenge during the pandemic. Individuals have experienced job loss due to the impact of the pandemic on their employer, restrictions placed on them by their living circumstances, and restrictions on the supports provided by their employment provider. Data collected by seven state IDD agency members of the State Employment Leadership Network suggest that only 46% of individuals in individual jobs and 35% of people in group supported jobs who were employed on March 1 2020 were still working three to five months later. Despite these challenges, a large number of individuals made the decision to continue working and successfully maintain their jobs. A few points stand out:

• Workers in individual, competitive jobs were more likely to continue working than workers in group supported employment.
• Despite the impact of COVID-19, providers have reported that individuals did enter new competitive, integrated jobs.
• A significant number of individuals stopped working primarily for personal reasons, including restrictions placed on them by their living circumstances. An ongoing challenge is helping them to assess their options and preferences.

Data from these states, combined with interviews with eleven employment consultants representing ten states, suggest that state-to-state differences in policy and response to the pandemic had a significant impact on employment outcomes. Interviews with employment consultants identified funding and billing, safety guidance, and service provision as factors that either supported or inhibited the ability of individuals to maintain employment. How a state responded to the pandemic could support flexibility and innovation in service provision, maintain or inhibit maintenance of employment staff, and restrict or enhance the ability of employment providers to provide services at all. Policies that redefined billable activities, sustained base funding, encouraged the use of technology, and maintained a clear value for employment were critical factors.

Considering new trends and challenges ahead.

Changes born of necessity over the past year will be key to the sustainability of the system in the future. The forces to maintain a compliant, cost-effective, and high-quality service delivery system will require resilience and determination to shape the stability of employment and day services.

Workforce shortages remain, and retooling direct support professionals to work remotely and deliver quality services in virtual environments will continue to challenge the system. The changes nevertheless hold promise in developing healthier and more engaging teams that provide more individualized inclusive services.

The array of state experiences suggests a need to apply lessons learned from the pandemic in redefining supports. For example, Bradley (2020) highlights the opportunity to deconstruct services to offer more individually designed supports, strengthen the use of remote and other telehealth supports, and expand self-directed services. The experiences of individuals, employment and day providers, and states suggest we can design support systems that, in addition to being more individualized, rely less on face-to-face supports. These new models can break away from a commitment to a 30-hour program week, incorporate virtual and remote supports, and focus more on outcomes than face-to-face time.

We imagine a future where individuals have the opportunity to seek self-directed services, and to design their week in ways that have the most meaning to them. In this vision, providers are encouraged to expand alternatives to facility-based programs and to be agile enough to offer multiple modes of service delivery and supports. Finally, we envision state systems that recommit to individualized, person-centered planning, and to building supports that emphasize employment and community life engagement. This will require reimagining funding, service definitions, technology, and workforce preparation.

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