Abstract

Our purpose in this article is to contend that organizational change from sheltered to integrated employment is not only possible but necessary, and a federal Employment First agenda must be advanced. Findings are reported from interviews with senior managers from 10 organizations that have shifted their service delivery to community employment, and recommendations are provided based on these findings. Results reveal the commonalities among a diverse group of agencies, suggesting the viability of transformation of our current systems with the support and leadership of state and federal agencies and programs.

The United States has strong disability legislation and legal decisions upholding the “separation is inherently unequal” dictate of the landmark Civil Rights Act of 1964. Yet, in the year 2011, our federal and state governments continue to uphold an apartheid system of mass congregation and segregation of adults with intellectual and developmental disabilities in sheltered workshops and day activity centers. Our purpose in this article is twofold. First, we contend that organizational change from sheltered to integrated employment is not only possible but is necessary. We discuss this premise in the context of national legislation, research, and best practices. We present the results of a set of structured interviews of providers that have undergone organizational change in order to describe our current status. Second, in light of these data and emerging Employment First initiatives in many states, we put forth a call for organizational change and offer a set of recommendations for a national Employment First mandate.

It is difficult to fathom the lack of progress toward universal access to employment for people with disabilities in the United States. On the 20th anniversary of the signing of the Americans with Disabilities Act (ADA) on July 26, 2010, a new survey sponsored by the Kessler Foundation and the National Organization on Disability (NOD) found that most Americans with disabilities are still struggling with many of the same lifestyle and economic issues they confronted over two decades earlier in 1990, when the ADA became federal law. The 2010 Kessler/NOD Survey of Americans with Disabilities, conducted by Harris Interactive, reveals little or no substantial gains in 10 key indicators, ranging from employment and income to social engagement and life satisfaction. Employment remains the largest gap between people with and those without disabilities and is directly linked to the continued lack of progress in other key areas for people with disabilities, such as income, access to health care, and socialization. Among all working-age people with disabilities, only 21% say they are employed full- or part-time, compared to 59% of people without disabilities. This gap has decreased since it was first examined in 1998, but it still remains large and its decline has been slow.

Despite demonstrations that people with high support needs can work in the community through supported and customized employment, congregation and segregation of people with intellectual and developmental disabilities in facility-based day programs is increasing, along with community-based nonwork programs. Most Americans are unaware that approximately three out of four adults with intellectual/developmental disabilities (76%) spend their days in facility-based services (Braddock, Hemp, & Rizzolo, 2005). As Curtis Decker, Executive Director of the National Disability Rights Network stated, “Most are paid only a fraction of the minimum wage while many company owners make six figure salaries” (National Disability Rights Network, 2011, p. 2). In fact, about half (54%) of those in sheltered workshops earn less than $2.50 per hour, while about a quarter (23%) earn less than $1.00 per hour (United States General Accounting Office, 2001).

The federal government, through the Medicaid program, continues to spend four times more money on segregated adult day programs, including day habilitation and prevocational services, than on supported employment, and there is no preference for integrated employment within the Medicaid program. Major policy and funding disincentives still exist that discourage people with disabilities to pursue integrated employment. For example, according to the United States Government Accountability Office “only 2 percent of the costs of the entire disability system are spent on programs that provide employment services, while most funds involve income support services (such as SSDI)” (Wittenburg, Rangarajan, & Honeycutt, 2008, p. 5).

Juxtapose the above status with the fact that we have an abundance of federal legislation intended to increase employment outcomes. The Individuals with Disabilities Education Act of 1990 mandated that all schools take steps to ensure that students achieve employment after graduation. The Rehabilitation Act Amendments of 1992, the Workforce Investment Act of 1998, and the Ticket to Work and Work Incentives Improvement Act of 1999 addressed integrated employment outcomes for individuals with disabilities. According to the Supreme Court's Olmstead v. L.C. decision in July 1999, services for people with disabilities must be delivered in the most integrated settings possible. This high court decision upheld the integration mandate of the Americans with Disabilities Act of 1990, which requires public agencies to provide services in the most integrated setting appropriate to the needs of qualified individuals with disabilities. The New Freedom Initiative was issued in 2001. Described as “fulfilling America's promise to Americans with Disabilities,” the New Freedom Initiative was designed to

help Americans with disabilities by increasing access to assistive technologies, expanding educational opportunities, increasing the ability of Americans with disabilities to integrate into the workforce, and promoting increased access into daily community life. (foreword to the New Freedom Initiative, 2001)

Also in 2001, the definition of employment outcome was amended within the State Vocational Rehabilitation Services Program (Federal Register, January 22, 2001). The revised regulations no longer allowed placement in segregated employment settings, such as sheltered workshops, to be an appropriate employment outcome of vocational rehabilitation services for individuals with disabilities. Instead, employment outcomes were defined as full- or part-time employment in the integrated labor market. To further illustrate the growing mandate for inclusion of people with disabilities, Self-Advocates Becoming Empowered (SABE) developed a Policy Statement on Employment in 2009. The statement promotes integrated employment and calls for an end to subminimum wages by 2012.

Sheltered Versus Integrated Employment

Many authors have described issues and concerns about sheltered workshops and other segregated day activity programs (McGaughey, Kiernan, McNally, Gilmore, & Keith, 1994; Migliore, 2010; Murphy & Rogan, 1995; National Disability Rights Network, 2011; Wehman, 1994). Sheltered workshops represent artificial work environments that rarely reflect conditions found in integrated work settings. The narrow range of work tasks (typically subcontracted from area businesses or focused on a few small businesses) does not represent the array of work opportunities that exist in most communities. Thus, true choice and self-determination are limited. Individuals who work in sheltered workshops typically earn subminimum wages, and there are typically periods of down time when no work is available. The rate of movement from sheltered workshops to the regular labor market is extremely low (e.g., 3.5%), indicating that workshops are not effective in preparing individuals for real work in real workplaces (Taylor, 2004).

It is important to note that many, if not most, adults with disabilities who spend their days in sheltered day programs would prefer to work in a real job in the community. For example, in a study in one state involving 210 adults with developmental disabilities in 19 sheltered workshops, 74% of them and the majority of their parents/caregivers and staff stated that integrated employment was their preferred choice or at least an option (Migliore, Mank, Grossi, & Rogan, 2007).

Since the 1970s and early 1980s, community rehabilitation providers have demonstrated that people within all disability categories (including developmental and psychiatric disabilities), and those with significant support needs, can work successfully in the community if given appropriate supports, typically through supported or customized employment services. Integrated employment outcomes, although still requiring improvement, exceed those of people in segregated day programs.

People with disabilities in integrated employment earn more than do those in sheltered workshops. In 2009, vocational rehabilitation data indicated that weekly earnings of people with intellectual or developmental disabilities in integrated employment averaged $213, based on an average of 24.7 hours of work per week (Butterworth, Hall, Smith, Migliore, & Winsor, 2011). Although income is still not at a level of self-sufficiency for supported employees, it exceeds wages in sheltered workshops, which average approximately $25 per week, based on an average 18 hours of work per week (National Core Indicators, 2008). In terms of cost–benefit, supported employees returned an average monthly net benefit to taxpayers of $251 (or an annual net benefit of $3,016.08 per supported employee) and generated a benefit–cost ratio of $1.46 for every dollar spent (Cimera, 2010).

States vary tremendously in their policies, practices, and rates of integrated employment outcomes. In 2007, Vermont was the first state to discontinue state funding for sheltered workshops (Sulewski, 2007). Washington State aligned their Employment First philosophy with policy by adopting the working age adult policy entitled “Pathways to Employment” (Division of Developmental Disabilities, 2008). This policy states that

Each individual will be supported to pursue his or her own unique path to work, a career, or his or her contribution to/participation in community life. All individuals, regardless of the challenge of their disability, will be afforded an opportunity to pursue competitive employment. (p. 1)

Washington State reported a 72% employment rate for individuals with intellectual/developmental disabilities. Other top tier states that reported more than 40% of individuals receiving day and employment services in integrated employment include Oklahoma, Vermont, New Hampshire, Connecticut, and New Mexico (Hall, Butterworth, Winsor, Gilmore, & Matzel, 2007).

Unfortunately, the growth trajectory of integrated employment has slowed since 2000, due in part to the economic downturn and resulting budget cuts at the state and local levels (Rusch & Braddock, 2004). According to Butterworth, Smith, Cohen Hall, and Winsor (2009), “While national estimates suggest modest growth in the number of individuals in integrated employment services, the percentage of individuals receiving integrated employment services declined to 21.9 percent in FY2008” (p. 18). Concurrently, there is growth in nonwork community-based services. In an era of limited public resources, one wonders why policymakers have not invested more heavily in services that result in integrated employment outcomes.

Most rehabilitation services organizations have added integrated employment to their array of services while maintaining sheltered day services. However, organizations all across the United States have made the commitment to move away from segregated services and have undertaken a changeover process to integrated services. This process is referred to as organizational change.

Organizational Change From Sheltered to Integrated Employment

The process of organizational change has been described in multiple publications (e.g., Albin, Rhodes, & Mank, 1994; Butterworth & Fesko, 1998; Rogan, Held, & Rinne, 2001). Moving to integrated community services necessitates a complete rethinking of mission, vision, values, and practices. Strategies for organizational change typically involve obtaining stakeholder buy-in; creating a vision for the future; mobilizing commitment; developing strong leadership for change within and outside of the organization; and aligning the organizational structure, human resource practices, and services to focus on integrated employment outcomes.

Most of these studies took place over a decade ago. Given the relatively flat growth of supported employment in the past decade, the current economic slowdown, and the emergence of Employment First initiatives, we were interested in investigating the current status of organizational change in the United States from the individual agency perspective.

Status of Organizational Change

The study of organizational change that we conducted involved a three-part process: (a) identify organizations in each state in the country that have made significant strides toward organizational change from sheltered to integrated employment, (b) conduct interviews with the executive directors or program directors of these organizations using a standard interview protocol, and (c) analyze responses and identify themes.

Method

This study involved qualitative inquiry and the use of semi-structured interviews, with some document analysis (Mack, Woodsong, MacQueen, Guest, & Namey, 2005). We used purposive sampling to identify organizations that had made significant strides toward organizational change. Our preselected criterion for agency selection was that agencies served at least 50% of individuals in community-based (integrated) services. Using a snowballing (also known as chain referral) sampling method, we worked through state APSE chapters (formerly the Association for Persons in Supported Employment) to identify organizations in that state that met the criteria for selection. We also used our professional networks to identify contacts in various states. One contact often led to another, resulting in a list of 36 organizations in 20 states that were identified as possible participants. Eight state contacts indicated that there were no organizations in that state that met the criteria. The list of 36 organizations should not be considered exhaustive nor did they all meet the criteria (50% in integrated services). We contacted the organizations on this list and selected 10 to interview during the spring of 2010. This sample was considered appropriate to obtain a good understanding of their organizational change experiences.

Participants

Table 1 provides a list of the 10 organizations that were included in this study, the person interviewed and their title, the number of people served in integrated employment, and the total agency budget for all services.

Table 1

Organizations Involved in the Study

Organizations Involved in the Study
Organizations Involved in the Study

Interview Protocol

Contact was made with each organization via e-mail or phone. A mutually agreeable time was set for a phone interview and the guiding questions were sent in advance. The following script was used in our correspondence with each organization:

Your agency was recommended as an example of the type of organizational change we would like to understand. The questions will allow us to get more information about your organization, your change process, resistance and barriers that you experienced, and suggestions for moving forward. Results will be shared in an article we are submitting to the Association on Intellectual and Developmental Disabilities (AAIDD). I would like to set a time to talk to you so that you can give us your thoughts about the following questions.

The interview questions are provided in the  appendix. Responses to these questions were typed on a computer as the interview progressed. Many exact quotes were captured, but not always. After the phone interview, the notes were immediately reviewed and expanded to capture the full essence of the conversation. Several individuals sent additional written information following the interview. Interviews varied in length, but averaged one hour.

Data Analysis

Qualitative data analysis followed a process described by Taylor-Powell and Renner (2003). The process involved (a) getting familiar with our data by reading and re-reading the interview texts, (b) analyzing and categorizing the data by reviewing responses to each question and identifying common and unique themes or patterns within and between texts, and (c) interpreting the data for major findings. A table was developed to document themes across all interviews. Quotes or examples for each theme were identified as illustrations of the theme.

Findings

The participating agencies varied in size, location (urban vs. rural settings), timeline of their change process, and the characteristics of the people they served. One organization was only one year into their changeover process, two had completed their conversion, and the others were somewhere in between. Despite their differences, there was a great deal of similarity in the reasons for change, the role of leadership, barriers faced, approaches to increasing employment outcomes, and resources they used to support the shift to community services.

Size of Agencies

The 10 organizations varied in size from serving 100 people to over 1,000 individuals in a region. Budgets ranged from $2.6 million to $25 million (including other services).

Reasons for Change

Making the decision to change the agency's direction and services is a difficult one for even the most experienced administrator. If we are to promote such risk-taking in other organizations, it is important to understand the motivations of these innovators. Each organization's respondent described a dissonance between their existing services and what they knew to be best practices for individuals with disabilities. As one agency director stated, “It's the right thing to do and it's long overdue.” Another noted that “I had been there long enough to realize that we were having a hard time keeping people employed with sheltered workshop activities. We are in a rural area without much industry.” Further, it was what their customers wanted. When one agency surveyed their participants, they were stunned to find that more than 75% said they wanted a job instead of coming to the facility. Sheltered work became problematic because they saw what was possible through supported employment. Whether they had been invited to participate in an organizational change initiative, received a state Developmental Disabilities Planning Council grant, visited an agency in the process of changeover, or learned through research, each came to understand that integrated employment was what people with disabilities wanted, and it was the right thing to do.

Changeover Processes

Respondents relayed a variety of strategies for shifting their service delivery model. In each instance, the executive director was the driver of the agency's transformation. The leader brought a new vision that compelled others to follow. The following summarizes some of the most common strategies:

Conducted strategic planning

At the outset leaders established a vision for the future of the organization and a sense of urgency to achieve the vision. Baseline data were gathered prior to change efforts. Through a systematic planning process (using such formats as Planning Alternative Tomorrows With Hope (PATH) and substantial education, staff, customers, families, funders, and board members learned what action steps would be needed to create short- and long-term outcomes and developed tasks, timelines, and people responsible. One director indicated that they targeted specific issues (e.g., structural, policies and procedures, communication, quality) within their implementation plan. Another agency set up subcommittees (or hot topic task forces) to address specific issues (e.g., scheduling, employment job descriptions, dovetailing person-centered planning with the Individual Program Plan process, marketing materials, and revenue generation) and report back to the guidance team.

Formed a leadership/change management team

Change management teams (also called guidance teams) were formed to champion the organizational change efforts. These teams, which typically consisted of management, direct support staff, and in some cases, people with disabilities, met regularly and planned, monitored, and evaluated activities. A couple of organizations reported that the teams were instrumental at getting acceptance across the agency. They served as a vehicle to communicate the vision and ensure that implementation plans included all perspectives. In at least one agency, the team has been operating for 15 years, even after the last workshop was closed in 2004. It continues to evaluate the agency efforts to fully integrate individuals in all aspects of their life.

Conducted extensive staff training

The shift to community services requires staff to learn new skills. For example, workshop staff needed to understand how to approach employers; supervisors needed to become skilled at how to support staff who would be spread out throughout the community; and administrators needed to budget, plan, and manage differently. One respondent emphasized that “staff training is the most important thing.” Organizations invested in trainings through the Community Rehabilitation Provider—Rehabilitation Continuing Education Program (CRP-RCEP), state APSE chapters, the Training and Technical Assistance for Providers project, online formats, outside experts, and in-house staff. Some training efforts included person-centered planning, job development, community building, systematic instruction, and program management. Without exception, agencies pumped substantial training resources to all levels of staff to address these training needs. In addition, external experts were brought in to assist with planning, staff training, and general consultation.

Flattened the organization's structure

In community services, communication across the agency is essential. Multiple agencies found it beneficial to reduce administrative layers so that communication was enhanced. A team structure, with staff members coming together to serve each person, promoted decision-making by those closest to the person, thus empowering others to act on the vision. Agencies used the team structure to support staff members who were new to finding employment and even to involve residential staff in the process. An agency that closed its workshops in 1990 now has teams that include both day and residential staff that support people across employment and home settings.

Redefined position descriptions

Several respondents indicated that they rewrote job descriptions for employment positions and funded these at a higher rate within the organization. This effort involved communicating with all staff members that employment is everyone's focus. Changes were also made to the quality assurance reviews to reflect changes in operational expectations.

Utilized a person-centered planning

Planning happened both at the organizational and the personal level. All agencies started by working with each individual being served to identify his or her skills, interests, and support needs. Various forms of person-centered planning were used to guide the process. Central to planning was the belief that everyone could work. Several agencies reported that this was key in changing the expectations of all involved, including family members. When planning moved from a deficit model to a strengths model it gave individuals a different view of the possibilities and eased many of their fears about community employment. As one director noted, “Teams came together with annual plans that set the course for each person. Our culture has evolved so staff can't imagine facility-based or group employment.”

Involved key stakeholders at all points

To gain input and consensus for the shift to community services, agencies involved individuals receiving services, family members, staff, board members, and funders from the start. These stakeholders shared information through focus groups and surveys. and they were involved in planning, implementation, and evaluation activities. As noted, one agency conducted a survey at the beginning of their change process in 1996. Through the survey they found the people they served were unhappy with sheltered employment and were extremely excited about the chance for a real job. The information guided their early work and allayed the organization's fears that they would meet with a great deal of resistance.

Diversified funding (blended/braided)

As agencies shifted their service systems, they found it essential to become less dependent upon state and federal funding. Many did this by developing or spinning off businesses. Others expanded services to other populations (e.g., children) or added services (e.g., housing). One agency found that the community came to know them as the place that deals with anyone with an employment barrier. This led to contracts for services with entities outside the disability field. Starting with 175 individuals the agency presently supports over 3,000 children and adults.

Connected and communicated with the community

The key ingredient in shifting to community services is the community itself. Most reported that connecting to the community became easier as staff members and the people they serve spent more time there. Connecting was also important for advancing the discussions of organizational change. This included involvement in various state-level forums (e.g., People First, The Arc, APSE, the Development Disabilities Planning Council, and the state's provider networks). Directors noted that the community was not resistant to their efforts. As one executive director put it, “Our relationship with employers has helped us during more difficult times. They value our services and see the value of the people we serve.” However, another indicated that “Due to the economic situation, we have experienced difficulties with employers regarding hiring and even work trials.”

Benchmarked

The process of change was facilitated in several instances by talking with and visiting agencies that were further along in the changeover process. Such experiences proved extremely powerful, because seeing was believing for staff. The early adopters had a more difficult time because there were no models to see. Of the 10 interviewed, most began their transformation during the 1990s, but two closed their sheltered facilities as early as 1986.

Gathered data

Data were gathered to document the starting point of each organization and the progress being made. For one organization this involved sharing employment statistics on a quarterly basis. In addition, the same organization periodically evaluated their progress using various measuring sticks, such as Kotter's (1995) eight stage process of creating major change and Ambrose's (1987) change matrix. The results for all made the effort worth it. As one executive noted, “The consumers are happier. Ninety percent of people are happy with their support, their wages, and their jobs.”

Ceased subminimum wage certificates

In one unique situation, the organization discontinued their subminimum wage certificates, thus ending all agency contract work that did not pay at least minimum wage. As noted above, SABE has set forth a national goal of ending subminimum wages by 2012.

Resistance and Barriers

Agency leaders reported multiple obstacles to organizational change, including staff resistance, family resistance, and funding structures that do not adequately support community-based services for people with high support needs. Some staff members who disagreed with this policy were let go. As one executive director noted, “Families worry about people being out rather than in one place. We still have some of this.” When one organization closed and sold some buildings, it caused great consternation because families “thought we were going out of business.” In several states, the sheltered facilities “have a big strong hold and are very vocal.” One respondent indicated that the “workshop licensing people don't even ask if people are getting jobs” and “the Quality Improvement Committee is not collecting data on employment.”

Another set of barriers was related to the fact that some agency leaders had limited experience in organizational transformation. As one respondent indicated, “The main thing has been not realizing what planning needed to go into it.” Perhaps most interesting was that none experienced opposition on the part of community members or people with disabilities.

Funding and other resources

Several respondents indicated that the state vocational rehabilitation agency has been an impediment (“It was more work than worth the funding they provided” and “A lot of people in day programs have been turned down by VR [vocational rehabilitation]”). One executive director indicated that they bypassed vocational rehabilitation by using Medicaid Waivers, which were designed for long-term support. However, another director indicated that Medicaid Waiver policies have been an impediment to funding long-term employment support due to caps on the number of hours of service allowed. In one case, a respondent noted that “vocational rehabilitation and DD [developmental disabilities] conflict. They don't know how to pull off a good relationship.” Notably, no one reported that funding structures were in alignment with their goals of organizational change, and they had to work very hard to find alternative monies. “You really have to want to do it and then go find your own money,” counseled one director.

On a positive note, one respondent indicated that vocational rehabilitation pays for follow-along support if there is no other funding source. Also positive was the fact that one state was in the process of modifying how they pay for employment, focusing on “money follows the person” and sufficient funding amounts. Multiple respondents indicated that the current budget crisis has led to funding cuts, making it even more difficult for agencies to pay for individualized services.

Other resources were secured from the state Developmental Disability Council and foundations in the form of grants. Several relied on entrepreneurial enterprises and fundraising. Universities and Community Rehabilitation Provider–Rehabilitation Continuing Education Program (CRP-RCEP) provided training and technical assistance, and other experts in the field offered consultation.

Serving People With High Support Needs

One of the reasons others have given for not shifting to integrated employment is that the people they serve cannot work due to the severity of their disability. The respondents at the agencies interviewed each gave examples of individuals they assumed at first would be difficult to place, but who have been working successfully for several years. One respondent indicated that “one out of five people we serve were declared unemployable by others.” Customized employment, with a focus on self-employment, was mentioned several times as a strategy for working with people who faced significant challenges to employment. However, in reference to placing individuals with significant disabilities in jobs, several executive directors indicated that “it is a tough sell in this economy,” especially in small towns, and state cuts have made it hard to serve people who have high support needs.

Completing the Changeover Process

Respondents from organizations that had a goal of complete changeover offered their thoughts about next steps. Their plans addressed both their organization and the state. A priority for most was to collect and analyze data about who was unemployed, why, and what needed to be done. One person indicated that there needed to be triage at the time of intake in order to braid funding and customize the approaches to securing employment. Another commented that they planned to “let the workshop die” as people retire. A huge undertaking continued to be institutionalizing all the new approaches throughout the organization. And even after the workshops are closed, there is still work to do. An agency that closed all facility services is focusing on community engagement.

At the state level, one director indicated that the state must set employment expectations in all of their policies and procedures. Funding is critical. “There is plenty of money out there around employment,” reported one agency executive, who said “Nothing will change until the funding works so that having someone work is just as lucrative to a provider as running a workshop.” Another spoke about the importance of their state being involved in the Supported Employment Leadership Network (SELN). Comprised of state developmental disability directors and supported by the Institute for Community Inclusion in Boston, this group is focused on sharing successful strategies for increasing employment outcomes. Yet another effort involves a series of National Organizational Change Forums that have been held in different locations around the country for the past 12 years, with which we have been actively involved. The goal of these forums, held every 2 years, is to elevate the discourse around organizational change; bring together key stakeholders, including state teams, for professional development; and develop a national agenda for change.

Several of the organizations are in states that have undertaken Employment First conversations, whereas in other states there is “some noise” but not much action. Others indicated that state-level discussions with the state's APSE chapter and the Alliance for Full Participation had taken place, focused on doubling employment outcomes. One agency indicated that they were part of a newly formed Mid-States Employment Coalition of three provider organizations in two states working together to support organizational change. It was encouraging to learn that upcoming state conferences are focused on Employment First initiatives.

Limitations

Given the fact that this study involved 10 organizations, the findings cannot be generalized to a national level. We caution that this is not an exhaustive compilation of the strategies employed by the agencies contacted. Neither can it be considered a prediction of the kinds of issues other agencies may face in undergoing a significant transformation. Rather, it is an analysis of the commonalities among a rather diverse group of organizations that have adopted the same goal, namely, to support people in community employment and end the practice of sheltered employment.

We next address the Employment First movement as a key element to promoting organizational change and integrated employment outcomes.

The Employment First Movement

In recent years, a new movement has been created to establish Employment First initiatives in the United States (Niemiec, Lavin, & Owens, 2009). States such as Tennessee in 2002; Washington in 2004; California and Indiana in 2005; Minnesota in 2006; and Georgia, North Dakota, Wisconsin, and Missouri are currently making progress in moving toward adopting and/or implementing Employment First initiatives. The former Assistant Secretary of the Department of Labor's Office on Disability Employment Policy, Neil Romano, issued a memorandum highlighting the importance of the nation's Employment First movement. According to the former secretary,

Several states have moved forward to implement policies that focus in integrated, community based employment earning at or above the minimum wage as its first option for individuals with intellectual and other developmental disabilities. Using these ‘employment first’ policies, states are tapping the skills and contributions of these individuals to match employer demand for a reliable, productive workforce through customized employment opportunities. In these employment first states, sheltered employment with sub-minimum wages and non work “day activities” are no longer acceptable employment outcomes. (as cited in Niemiec et al., 2009, p. 139)

The policies, strategies, and practices of Employment First initiatives focus on integrated, community-based employment as the first option for individuals with disabilities. That is, state policies, funding structures, service delivery options, training and technical assistance priorities, data collection, and other practices should support integrated employment outcomes. Such statewide initiatives must involve collaboration with multiple stakeholders (individuals with disabilities, businesses, rehabilitation agencies, state agencies, disability organizations, and families) in order to build a strong coalition. Several states, such as Indiana and Minnesota, have produced Employment First reports. which serve as tangible evidence of goals and actions to be taken and as examples for other states.

Recommendations for Systems Change

The federal government and states continue to invest in facility-based and nonwork services, despite demonstrations that people can work and want to work if given appropriate services and supports. States vary tremendously in their commitment to integrated employment. Current return to work options for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) participants are limited in scope (General Accounting Office, 2004) and create disincentives to work (Stapleton, O'Day, Livermore, & Imparato, 2006). Less than 0.5% leave the rolls (Berkowitz, 2003), and few (approximately 4.8%) Social Security Administration disability beneficiaries ages 18 to 57 participate in vocational rehabilitation (Thornton et al., 2007). Furthermore, work incentives have been underutilized, with little impact on improving employment outcomes (Butterworth et al., 2009).

Our purpose here is to advocate for organizational change from sheltered to integrated employment, which is not only possible but necessary, and a federal Employment First agenda must be advanced. Extensive and expansive legislation, legal decisions, research, policies, and practices all point to the fact that the United States must take immediate steps to move beyond outdated, ineffective, segregationist modes of funding and service delivery. The results of discussions with organization leaders illustrate the efforts of those who are accomplishing this outcome in order to push back against those who say it cannot be done.

Promoting true systems change will take effort from federal, state, and local leaders. Recommendations are offered for each of these levels.

Federal and State Change

Develop federal and state Employment First initiatives

At the federal and state level, it is essential to develop Employment First initiatives that clearly articulate employment as the desired outcome and first option for individuals with disabilities. Imagine a federally funded national Employment First competition similar to Race to the Top that articulated desired outcomes (individualized and integrated employment at minimum wage or higher), promoted collaboration across key stakeholders, funded training and technical assistance for organizational change and integrated employment, required alignment of policies and funding across state agencies, and required solid data reporting outcomes. A unified national effort would be very powerful and would promote innovation and true change. It is time for a new federal initiative to promote systems change initiatives specifically to transition to integrated employment and kick start change efforts.

Align policies, funding, and practices

Federal and state change must include alignment of policies, funding, and practices across federal and state agencies. Such alignment must include cash benefit programs (SSI, SSDI) to promote integrated employment. The balance of expenditures should be shifted from sheltered to integrated employment by developing higher rates for desired outcomes. Policies that impose income and asset limitations that lead to poverty should be revised. Funding should continue for successful Medicaid Buy-In programs that allow adults with disabilities to maintain Medicaid coverage while earning more than otherwise would be allowed. As SABE has called for, subminimum wage provisions should be phased out.

Develop quality indicators for service providers

Quality indicators used by federal and state agencies must focus on practices that promote community employment. Evaluations and funding should be tied to desired outcomes, and annual targets should be set to track increases in integrated employment and concurrent decreases in facility-based and nonwork services.

Gather and use good data for decision-making and accountability

As the saying goes, “what you count counts.” It is essential that states gather, disseminate, and use good data for decision-making and accountability. Examples of important information to gather and compare within and across states include the numbers in integrated versus segregated settings, funding levels between integrated and sheltered employment, and cost savings and public benefit realized.

Expand and support comprehensive transition services

School to work and adult life transition services must result in postsecondary education and integrated employment outcomes. Doing so would cut off entry into sheltered work services and result in significant cost–benefit and quality of life outcomes while shrinking congregate, segregated services. This effort will require a renewed focus on transition planning and services in schools, including preparatory curricula, inclusive education, interagency collaboration, job training, student self-determination, and parent partnerships.

Provide a training arm in every state

Most of the leaders interviewed for this article mentioned the importance of support and training around the process of organizational change. They relied on support forums to build their leadership skills and to promote positive systems change strategies. Forums similar to the State Employment Leadership Network would help state and local leaders learn from those who have paved the way, those agencies in this study and the many others across the country. Ongoing training and technical assistance for organizational change and integrated employment best practices is critical to moving the effort forward.

Local and Organizational Change

At the local level, senior managers can have a significant impact on organizational change and integrated employment outcomes. Recommendations include the following:

Become informed about organizational transformation

Shifting from facility-based to community-based services requires a total change in thinking and practices. Organizational leaders need to be knowledgeable about effective change management strategies in order to guide their agency toward successful outcomes. Statewide training and technical assistance, mentioned above, is a critical vehicle for providing such professional development support. As part of a statewide systems change grant in Indiana, we found that gathering together agency leaders to learn and problem solve together and share successful strategies provided a powerful structure and network for organizational change.

Partner with self-advocates to promote change

Given that this discussion is all about the lives of people with disabilities, it is imperative that organizational leaders partner with self-advocates throughout the changeover process. Together, service providers and self-advocates can plan, educate others, demonstrate successful outcomes, and push for change within and outside of the organization. It is extremely beneficial to partner with self-advocacy/advocacy organizations to promote change.

Share success stories widely

Respondents interviewed for this study were so busy facilitating change that they often neglected to share the incredible life-changing stories that represented their efforts. Sharing success stories with staff, families, funders, employers, and community members serves to promote buy-in and enthusiasm for the change efforts. Given the fact that organizational change is very hard work, taking time to celebrate success is vital to keeping the energy and effort moving forward.

Hire and support the best staff

Too often, the work of human services is on the backs of low-paid staff members who are undertrained and lack good support. Organizational change and integrated employment rely on staff people who are well-trained and supported. Organizational leaders must seek, hire, prepare, and support the best staff possible. Part of this effort involves the development of an organizational culture that respects and appreciates staff members, invests in their professional growth, supports a career ladder, and rewards desired outcomes.

Promote the highest expectations

Working with board members, self-advocates, and families, agencies can raise expectations for people with disabilities by providing high quality, individualized, flexible, and stable supports for integrated employment and meaningful lifestyles. These stakeholders may have settled for the status quo for years and years, and they may not hold a vision for what is possible. Demonstrations of success allow stakeholders to see the change and, as a result, believe that it is possible.

Address resistance to change

In order to achieve successful change, it is important to directly address the reasons some have chosen to stay in segregated settings. Reasons include safety, the social environment, and consistent support throughout the day and year (Migliore et al., 2008). Each of these issues has been addressed in hundreds of thousands of cases throughout the United States; but, in the end, they must be addressed one person at a time. Unless supported or customized employment can offer something better in terms of quality of life and happiness for each individual with a disability, sheltered workshops will continue to be desired by families and others.

The experiences of the agencies highlighted in this article prove that with the vision, commitment, and the right strategies, organizations can make integrated employment a reality for everyone they serve. An Employment First agenda demands an attitude that all people can and should have the opportunity and ongoing support to be employed in the community. The recommendations for federal, state, and local change offer a 20/20 vision that we hope will be accomplished by the year 2020. As a great person once said, “If not us, who? If not now, when?” (anonymous). This is a call to action!

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Appendix

Interview Questions

  1. What is the size of your agency (customers and budget)?

  2. Of those you serve (working age), what percentage are working in the community?

  3. Do you have group placements? If so, describe.

  4. Describe your changeover process: how you began and the path you've taken to this point.

    • Structural changes?

    • Resources used (e.g., consultants, training, other organizations, networks)?

  5. What, if any, resistance did you get, from whom, and how did you facilitate buy-in?

  6. Discuss your funding issues: what has facilitated and impeded your change efforts?

  7. Describe how you have been successful in securing jobs, including for individuals with significant disabilities.

  8. What barriers or impediments have slowed your organizational change efforts?

  9. What will it take to complete your changeover process (assuming that is the goal)?

  10. What will it take to implement Employment First policies and practices in your state?

Author notes

Pat Rogan, PhD (e-mail: progan@iupui.edu), Executive Associate Dean, School of Education, Indiana University, 902 W. New York St., Indianapolis, IN 46202. Susan Rinne, MPA, Executive Director, Options, 200 E. Winslow Rd., Bloomington, IN 47401-8657.