RETAIN Kentucky: A return-to-work and stay-at-work program for people with disabilities grounded in the conservation of resources theory

1 Introduction

Each year in the United States, millions of people exit the workforce due to non-work-related illnesses and injuries [1, 2]. Particularly for people in the mid-career stages of life, this blow to their employment status and economic self-sufficiency can be devastating [3]. Over time, the loss of employment and the resources it brings (e.g., employer-sponsored healthcare benefits, stable income, social support) can negatively impact any or all aspects of a person’s life [4].

Experts have long asserted that the specter of continuing employment while coping with a disability is an exceedingly difficult proposition, but it is critically important. Without intervention, workers who have acquired disabilities are likely to progress through medical leave, short-term disability, long-term disability, and ultimately onto Social Security Disability Insurance (SSDI) benefits [1, 5]. The aggregate cost of exiting the workforce is high for the individual and family members, for the person’s employer, and for society at large [6].

Acquiring a mid-career disability is considered one of the most stressful circumstances in the modern human experience [7]. The injury or illness may threaten the individual’s perceived ability to live a fulfilling life. Disability is also apparent to others in one’s family, social network, and employment setting. Research indicates that others view acquired illnesses and injuries as stigmatizing conditions associated with stereotypical perceptions of the person as contagious, a safety risk, unproductive, dependent, and unstable [7]. These stereotypes may cause family members to emphasize what the person cannot do, friends to avoid social contact with the person, and employers to initiate actions that cause the person to resign or retire [4, 8]. Thus, and understandably, some employees may attempt to conceal their injuries or illnesses from their employers [9]. Workers with disabilities often report fears that employers will refuse to meet their accommodation needs, view them as safety risks, and seek to terminate their employment in favor of replacement workers who do not have disabilities [6]. Moreover, workers with mid-career injuries and illnesses frequently cite the lack of effective vocational rehabilitation services as a barrier to their continued employment [9].

Disengaging from the workforce following the onset or exacerbation of an injury or illness is often unhealthy for the individual. The medical and psychological effects of the disability itself conjoin with the negative impact of being unemployed in a manner that can undermine one’s medical treatment, intensify disabling symptoms, and affect performance in a wide range of social roles [10]. Collectively, these experiences with disability interfere with the person’s belief in the ability to exert personal control in daily affairs and achieve community living, educational, recreational, financial, and vocational goals [11, 12].

Given this summation of the impact of acquired disability, it is no wonder that attempting to retain employment while coping with injuries and illnesses proves to be so challenging for so many people. The onset or exacerbation of disability constitutes a real and present threat to assets or resources that enable the individual to maintain a fulfilling life. This threat of loss or actual loss of resources causes individuals to conclude that their disabilities will have multiple negative and uncontrollable (i.e., stressful) effects on their lives, a conclusion that only serves to heighten the negative impact of disability on the individual and on one’s ability to work [12].

Hobfoll’s Conservation of Resources Theory (CRT) provides a useful framework for understanding and intervening upon the myriad effects of disability on employment [13–16]. The CRT holds that human beings are motivated to increase their resources that sustain and improve their lives, and to protect any losses of resources. These resources are classified into four major categories: condition, energy, object, and personal [16].

Condition resources encompass interpersonal relationships (e.g., being married) and statuses (e.g., having a stimulating job) that affect quality of life. Energy resources are exchangeable “things,” including money and time, that can be deployed to obtain more resources. Object resources entail amenities in the physical environment (e.g., housing, transportation). Lastly, personal resources are personal attributes and identities (e.g., gender identity, socioeconomic status, severity of injury/illness). Any real or perceived threat to any of these resource types can create stress, undermine psychological and physical health, and compromise one’s overall quality of life [6]. On the other hand, focused efforts to preserve or protect these resources, in the case of this article for purposes of helping people with disabilities to remain in the workforce, have the potential to alleviate stress, promote positive health outcomes, and enhance quality of life. In the remainder of this article, we describe one such effort.

2 A Comprehensive Return-to-work and Stay-at Work Program

With the onset or progression of disability posing such a threat to so many individuals’ health, resources, and quality of life, the Retaining Employment and Talent After Injury/Illness Network Kentucky (RETAIN Kentucky) project began in 2018 with the objective of increasing employment participation and retention for people with non-work-related injuries and illnesses. Guided by the evidence-based Crux model of vocational case management that has been widely utilized in rehabilitation counseling settings for more than 40 years, RETAIN Kentucky offers RTW and stay-at-work (SAW) services to aid injured or ill employees, their families, employers, and the state and national economies [17]. RETAIN Kentucky is driven by an early healthcare and vocational intervention to minimize barriers to work that those injuries and illnesses may create, all in the interest of reducing the number of lost days of work due to injury or illness and pre-empting disengagement from the workforce. RETAIN Kentucky employs a cadre of highly trained RTW Coordinators (RTWCs) who deliver the intervention.

RETAIN Kentucky Phase 1 (2018–2021) was a federally funded pilot program that assisted more than 200 Kentucky workers with disabilities. The early-intervention service model hinged on a collaborative relationship among the worker, the worker’s healthcare providers, and the employer –facilitated by RETAIN Kentucky RTWCs. The evaluation plan for Phase 1 involved a single-cohort, longitudinal design that collected employment-related, health-related, and quality of life measures from participants.

The Phase 1 participant eligibility criteria were that the person must: 1. have an injury or illness that is not work related; 2. be employed or have been employed within the last 12 months, making at least $1,000 in one of those months; 3. not have applied for or be receiving federal disability benefits including Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI); and 4. reside, work or receive health care services in the 14 county geographic catchment area that includes Louisville and Lexington. Once participants were enrolled in Phase 1, they were assigned to a RTWC. The RTWC worked with each participant to develop an RTW/SAW plan, depending upon the participant’s employment status, healthcare needs, life circumstances, and future goals. The RTWC then worked with the participant to implement the plan. Healthcare providers and employers were also engaged, when the participant authorized communication with the RTWC. Important community supports and resources (e.g., transportation, childcare, housing, financial assistance) were also assessed and included when needed by the individual. The well-known RTW hierarchy was utilized for case conceptualization purposes [18, 19]. The hierarchy places priority order on services that help workers return to their same jobs with their same employers (Tier 1), then on supports for the same jobs with different employers (Tier 2), different jobs with their same employers (Tier 3), and different jobs with different employers (Tier 4). In keeping with established best practices in integrated disability management [6, 19], RTWCs and participants operationalized the RTW/SAW plan by moving only as far down the RTW hierarchy as was necessary to return the worker to an employment situation that was commensurate with the RTW/SAW goal.

RETAIN Kentucky Phase 1 was guided by an abiding philosophy of universal design whereby services and supports were usable to all eligible participants regardless of disability or other characteristics [20]. This proved particularly important at the outset of the COVID pandemic. Given that RTWCs used multiple methods for engagement with participants, including video meetings, there were no COVID related service interruptions when face to face meetings were largely paused in 2020. Assistive technology consultation and workplace accommodations ensured that the workplaces participants returned to were fully accessible, and employers of participants were encouraged to make their facilities and information available and accessible to the broadest audiences of stakeholders. Peer mentoring and supports were also an essential element of Phase 1 services. This component of the intervention provided one on one support from an individual who had successfully navigated barriers to employment and independent living, and this individual served as a valuable guide for Phase 1participants.

Throughout Phase 1, RETAIN Kentucky emphasized the multiple systems and stakeholders that are integral to improving return to work outcomes and keeping valuable employees from leaving the workforce. Committed partners included public health, healthcare providers, universities, regional and state workforce development boards, disability management organizations, social service referral mechanisms, the Council of State Governments, and the state Vocational Rehabilitation agency. Phase 2 continues and expands on these partnerships. Statewide expansion of the intervention includes new partnerships across healthcare and workforce systems. These include the Kentucky Chamber of Commerce, University of Kentucky Cooperative Extension Service, and statewide medical and allied health associations.

Two hundred forty-seven workers enrolled in the Phase 1 intervention. The average age of participants was 46 (minimum = 18, maximum = 75). Gender data were required to be captured as a dichotomous variable and were evenly split at 50.2% male and 49.8% female. In terms of race, 65.2% were white, 33.2% were black or African American, 2% were Asian, and 0.4% were Hawaiian or Pacific Islander. Approximately 4% were Hispanic. Education level ranged from less than a high school diploma (4.9%) to an advanced degree (8.9%), with the modal group of participants having a high school diploma, GED, or certificate of completion (41.7%). Participants worked across a variety of industries, with the greatest proportions coming from education or health care (20%); manufacturing (19%); and professional, management, or administration (13%).

Roughly 70% of participants self-reported having an illness and 30% indicated an accident or injury. A variety of diagnoses were reported, including stroke, COVID-19, mental health conditions, multiple sclerosis, and cancer. Approximately 51% of participants had a job that was physically demanding. A full 47% had at least one mental health diagnosis. Thirty-eight percent had fine motor difficulties. Roughly one-third of participants experienced chronic pain, and 59% had a condition that required hospitalization, surgery, and/or extensive levels of treatment. Despite this, 72% of Phase 1 participants were not using workplace accommodations at the time of enrollment in the project.

At exit, 52% of RETAIN Kentucky Phase 1 intervention participants had returned to work. As to the RTW hierarchy we described earlier in this article, of those who were working at the end of their Phase 1services, 79% had returned to their prior jobs with the same employers, 5% had different jobs with their same employers, and 16% were working for different employers altogether. The proportion of Phase 1participants who had not returned to employment at the time of their exit (48%) underscores the severity of work limitations associated with their disabilities, the high numbers of employment risk factors they reported at enrollment, and the still unfolding economic impact of COVID-19.

Many lessons were learned in Phase 1. Deliberate incorporation of RETAIN as part of the state’s overall priorities in workforce development and complementary disability employment initiatives (e.g., Employment First) built strong capacity for sustainability of the project during and after Phase I. The language used around state economy and workforce has been intentional in its emphasis on all Kentuckians, not just some. As a result, Kentucky provides a hospitable environment in which to introduce, expand and sustain workforce innovations, like RETAIN. We also found that coordination across referral mechanisms such as healthcare, employers, insurers, self-referrals, and community organizations was critical at the local level. Because many participants needed additional community services, ensuring that community organizations were aware of RETAIN led to reciprocity –RETAIN referred participants to these community organizations and vice-versa. This broad-based coordination also emphasized, and in many cases mitigated the impact of social determinants of health on workers.

The Phase 1 RETAIN Kentucky team provided training on RTW/SAW best practices to 517 health care providers and 673 other stakeholders. Systems change takes time, but, through our commitment to interdisciplinary pre-professional and continuing education training, we learned how important it is to engage all stakeholders in the process of solving pressing societal problems such as the low rate of labor force participation among Americans with disabilities. Perhaps the most enduring lesson learned from Phase 1 was that the COVID-19 pandemic brought both challenges and opportunities. The focus on universal design enabled a shift to remote service delivery during the pandemic with no gaps. Some employers also became more open to thinking broadly about how work gets done and how effective innovations could and should be continued in a post COVID workforce.

RETAIN Kentucky Phase 2 represents a statewide expansion of the Phase 1 pilot project. A minimum of 3,200 participants will be served in Phase 2, and those participants are being randomly assigned to either an expedited or enhanced vocational intervention group. Eligibility criteria have been expanded beyond the initial 14 county service area to the entire state. The minimum earnings threshold has also been removed, along with the requirement that the person has not applied for or received federal social security disability benefits. The expansion in both geographic scope and numbers of participants will require strengthening of partnerships. This will strengthen RETAIN Kentucky’s sustainability efforts, and it may have the added benefit of ‘softening the ground’ that is needed to promote policy change related to RTW/SAW that transforms the healthcare and workforce systems. Because the employment of people with disabilities is a critically important public health matter, our Phase 2 efforts to improve RTW/SAW outcomes for Kentuckians with disabilities are intended to result in improved health and quality of life outcomes statewide. Phase 2 will also leverage resources with workforce partners to foster data-driven decision making that improves how employers and workers are served through innovative policies and practices. Expansion of relationships that are being built with disability management organizations will add value and supplement their approaches to workers with non-work-related impairments.

Major activities that define the Phase 2 work plan include:

3,200 participants served

3 Conclusion

The results of RETAIN Kentucky Phase 1 supported our expectation that high-quality, early intervention would positively influence RTW and SAW outcomes. Borrowing from the established disability management model, employers and healthcare providers are integral elements of success, as are assistive technology resources, peer support, intensive case management, and connections with community resources regarding social determinants of health. Lessons we have learned from Phase 1 are informing our broader intervention and systems change efforts in Phase 2. The state’s recent passage of Employment First legislation will strengthen employer outreach through RETAIN, by providing employers a policy incentive to engage with their employees who have disabilities or who may be at risk of developing a disability. Several RETAIN Kentucky leaders also serve on the state’s Employment First Council.

Over the coming months, this RTW Corner article series will highlight specific content that informs the development of transformative policies and practices leading to more inclusive workplaces and greater levels of labor force participation for people with disabilities in Kentucky and across the United States. Our subject matter experts and partners will co-author articles with RETAIN Kentucky personnel that shine a light on strategies aimed at improving successful RTW and SAW outcomes even amid the continued uncertainty of the global public health and economic situation posed by the COVID-19 pandemic.

4 Disclaimer

Preparation of this article was funded by the U.S. Department of Labor and the Social Security Administration under a grant award of $21,600,000 to the Kentucky Office of Employment and Training that will be incrementally provided. 100% of grant funding is from U.S. Federal funds. This document does not necessarily reflect the views or policies of the U.S. Department of Labor or the Social Security Administration, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.

Conflict of interest

None to report.