Based on the 2010–2011 National Survey of Community Rehabilitation Providers, findings are presented on people with all disabilities and people with intellectual and developmental disabilities (IDD) who are served in employment and nonwork settings by community rehabilitation providers. Findings suggest little change over the past eight years in participation in integrated employment. Overall, 28% of all individuals and 19% of individuals with IDD were reported to receive individual integrated employment services. The results suggest that 15% of individuals with IDD work in individual integrated jobs for pay. Group supported employment continues to play a smaller but significant role in employment supports, with almost 10% of individuals with IDD participating in enclaves or mobile work crews. Data do reflect a decline in participation in facility-based work for individuals with IDD, from 41% to 27.5% and a concurrent growth in participation in nonwork services to 43% of all purchased services.
Community rehabilitation providers (CRPs) and their staff are the primary source of employment supports for people with intellectual and developmental disabilities (IDD). Defined as community-based organizations that provide employment and day supports to individuals with disabilities, CRPs vary widely in their size, the population they serve, and the services they provide. A 2002–2003 survey found that on average CRPs served 171 individuals in employment and nonwork services, and that the majority (over 70%) of individuals with disabilities served by CRPs are individuals with IDD (Metzel, Boeltzig, Butterworth, Sulewski, & Gilmore, 2007). Inge et al. (2009) also found that individuals with developmental disabilities were the primary disability group receiving supports, with 80% of responding CRPs reporting that individuals with developmental disabilities represented most or all of the individuals supported. Over two thirds of CRPs provide both employment and nonwork services, and, of those that provide employment services, 70% offered both integrated and facility-based (sheltered) employment supports (Metzel et al., 2007). Identifying the number of CRPs nationally is difficult, but estimates range from 5,000 to 6,000 based on recent efforts to build a comprehensive list to 8,100 (Haines & Domin, 2013; Menz, Hagen-Foley, Botterbusch, Thomas, & Radtke, 2002).
Services provided by CRPs vary along two dimensions, purpose (work or nonwork) and setting (community based or facility based) (see Table 1). Integrated employment supports can be further distinguished by the number of individuals with disabilities present. Service systems distinguish between individual integrated employment, group supported employment, and time limited work experiences. Facility-based and nonwork services continue to dominate for individuals with IDD, and data from state IDD agencies suggests that participation in integrated employment declined between 2000 and 2010 (Butterworth et al., 2011; Rusch & Braddock, 2004). Inge et al. (2009) found that 74% of individuals with IDD participated in sheltered employment, day habilitation services, or nonwork community integration services while only 26% were working in integrated employment. Furthermore, of those in integrated employment, almost one third (8% of all served) were in group supported employment models, such as enclaves and mobile work crews. Despite these national data, some providers have successfully shifted emphasis to integrated employment supports, including closing one or more facility-based programs (Brooks-Lane, Hutcheson, & Revell, 2005; Brown, Shiraga, & Kessler, 2006; Butterworth, Fesko, & Ma, 2000), and some states have been successful in significantly increasing the number of individuals in integrated employment (Butterworth et al., 2011; Hall, Butterworth, Winsor, Gilmore, & Metzel, 2007). Butterworth, Gilmore, Timmons, Inge, and Revell (2007) found that smaller organizations (those serving 1–40 individuals) had significantly higher rates of participation in individual and integrated employment. In addition, organizations that served all or mostly individuals with IDD had significantly lower participation in individual employment and significantly higher participation in subminimum wage employment. While factors such as size and population served relate to outcomes, the survey results also suggest that organizational priorities and goals are critical influences in outcomes and may play a more central role than commonly accepted factors such as fear of benefits loss, family concerns, or transportation availability. Rogan and Rinne (2011) found that agencies that successfully converted their services provided extensive staff training and rewrote staff position descriptions to emphasize integrated employment services. Their findings also showed the importance of setting benchmarks and gathering data to evaluate outcomes and progress.
Nationally, CRPs maintain a limited investment in integrated employment. In a national survey of CRPs that provide subminimum-wage employment, respondents reported that only 8.7% of staff worked with individuals earning minimum wage or higher (Inge et al., 2009). Eighty-nine percent of respondents indicated that sheltered employment was a necessary service, 69% responded that individuals with IDD were unable to earn minimum wage, and only 47% of CRPs indicated that their organization had a formal plan to expand integrated employment (Inge et al., 2009). Agency leaders report multiple obstacles to transitioning into integrated employment services, including staff resistance, family resistance, and funding structures that do not adequately support community-based services for people with high support needs (Rogan & Rinne, 2011). However, in their recent study of organizational changeover from sheltered workshops to the provision of community employment supports, Rogan and Rinne (2011) found several similarities among successful organizations. The reasons for change, role of leadership, approaches to increasing employment outcomes, and resources used to support the shift to community services were found to be common factors in the organizational change process.
The purpose of this study was to identify and describe employment and nonwork services provided by CRPs, the characteristics of individuals who received services, and to continue a series of surveys that began in 1985. This article presents findings on the participation of people with all disabilities and people with intellectual and developmental disabilities (IDD) in employment and nonwork services. The last national comprehensive survey of CRPs conducted by the Institute for Community Inclusion was in 2002–2003 and also gathered data on provider services for individuals with disabilities (Metzel et al., 2007). This article will incorporate some of those findings and compare them to the 2010–2011 survey in order to assess the state of integrated employment outcomes of people with disabilities.
Data Collection and Methods
The goal of the survey was to collect organizational characteristics and service information from CRPs in all U.S. states with a focus on individuals with IDD. The survey instrument was designed to be consistent with past CRP surveys and incorporated input from ICI staff and pilot organizations. Twenty-three pilot organizations from Massachusetts and New Hampshire were selected, of which 11 responded with feedback on the proposed survey instrument including the clarity of questions, ease, and length of completion. Pilot respondents were compensated for their input with a $10 gift card. Final instrument items were a mix of closed and open-ended questions and Likert scale responses. Most questions requiring respondents to input numbers were in table format. The original full-length survey contained five sections. Section A gathered general information about the CRP (e.g., type of organization, geographic scope, budget, number served annually). Section B gathered data on employment services, including the number of people served in nine employment settings and the number served by funding source and disability type. The section also asked respondents to answer questions about the trend for the number served over the previous three years for six of the nine employment settings. Section C addressed nonwork services including the number served in each of four nonwork settings and two trend questions related to two nonwork services. Section D addressed the CRP's participation in the Ticket to Work Program. Lastly, Section E was comprised of questions about CRPs' relationship with state Vocational Rehabilitation (VR) agencies.
A condensed version of the survey (not analyzed for the purpose of this article) was used in the later stages of data collection to increase the response rate and contained Sections A, B, and E with some questions in each section eliminated to increase response rate. Respondents were provided with detailed definitions of different types of nonwork and employment services and a description of intellectual and developmental disability (IDD) as it is used in this survey.
Services are described in this manuscript according to the two primary dimensions of type of service (employment or nonwork) and location (community based or facility based). The distribution of services for analysis is identified in Table 1. Community-based employment services are further divided into individual integrated employment, group supported employment, and short-term work experiences for parts of the analysis.
The survey population for this study was community rehabilitation providers from all 50 states and the District of Columbia that provided employment and/or day services to individuals with disabilities. Various publicly-accessible sources were consulted to assemble a final sample frame of 11,712 organizations. Organizations were drawn from lists from key disability-focused non-profit organizations including the ARC, United Cerebral Palsy Association, NISH, APSE, Easter Seals, as well as state run agencies including mental health, vocational rehabilitation, and IDD that were able to provide a list of CRPs they contract with.
Working from the list of 11,712 CRPs, the organizations were grouped by state using stratified sampling. The following steps were implemented to compile a final sample. For states that had fewer than 100 organizations on the list, every identified CRP was included in the sample. For states with at least 100 CRPs, a simple random sampling approach was used, and 100 organizations were randomly selected in each state resulting in a sample of 4,418 CRPs for 50 states and the District of Columbia. Graduate assistants then proceeded to verify whether these organizations met the criteria of being a CRP and had valid contact information (address and a valid phone number) for follow-up purposes. If an organization failed to meet these two criteria, it was replaced by another randomly selected organization from that particular state. If the state had less than 100 CRPs to begin with, then the CRP would be eliminated from the sample and not replaced. This process resulted a final sample list of 3,551.
Survey Implementation and Response
Full-length survey implementation
A survey packet that contained the survey booklet, postage-paid reply envelope, and a cover letter explaining purpose of the survey and how to complete it was mailed to each CRP in the final sample. Respondents had the option to fill out the survey online by going to a website and entering a unique code, completing a paper survey, or calling a toll-free number and conducting the survey over the phone. In order to increase the response rate, a systematic follow-up strategy was implemented throughout the entire data collection process. Two postcard reminders were mailed to all nonrespondents, four email reminders to nonrespondents for whom we collected emails during sample cleaning, and a second survey packet with an extended deadline. Post cards were sent out one week after each survey packet. Additionally, graduate assistants conducted two rounds of phone follow up. Four months into survey implementation, and concurrent with the second round of telephone follow-up, an incentive letter and email was mailed that offered access to free prerecorded webinars on topics we found would be relevant to CRPs following completion.
Condensed survey implementation
After six months of survey implementation, the survey instrument was shortened to three sections (see Instrument Development) and a third and final survey packet was mailed. The packet was followed by two email reminders to nonrespondents for whom we had emails and a third round of phone follow-up. Data collection ceased at the end of February 2011.
During the survey implementation process, CRPs in the sample that were determined ineligible were replaced following the same strategy used for the original sample. A CRP met the criteria of ineligibility by not providing services, having invalid contact information, discontinuing services, or being a duplicate. We found out that a CRP was ineligible when survey packets were returned as undeliverable as well as during phone follow up. Ineligible CRPs were removed from the sample and replaced in the same manner as during sample cleaning: CRPs in states with less than 100 CRPs were not replaced; CRPs in states with 100 or more CPRs were replaced through random selection. A total of 282 cases were replaced in five waves. Our final sample size was also affected by CRPs that refused to participate in the study—a total of 262. Once a CRP refused, they were removed from follow-up efforts and future mailings.
From the original 3,551 list of CRPs, a total of 1,309 CRPs completed the survey questionnaire, yielding a 36.9% response rate. Seventy-eight percent of respondent organizations completed the full-length survey (n = 1,016), and 22.3% (n = 293) completed a condensed version of the survey. Filling out the survey online was the preferred method, with 65.7% of surveys completed that way, followed by mail (33.2%), and phone (1.2%). Findings for this manuscript are based on the 1,016 responses to the 2010–2011 National Survey of Community Rehabilitation Providers full-length survey.
The Institutional Review Board (IRB) at the University of Massachusetts Boston reviewed the survey instrument and study determining the study exempt. The survey instrument contained a section titled “Your Rights as a Participant” where it was communicated to respondents that filling out the survey was voluntary and their information will be kept confidential.
Date Preparation and Analysis
Paper surveys were stamped with a receipt date and marked in a FileMaker database as received. The submission of electronic surveys was checked weekly and entered as received as well. After the survey closed, paper surveys were bundled into packets of 10. A coding scheme for addressing errors and missing data was developed, and each survey was reviewed and edited by two survey team members. Cases with missing data were excluded from analyses. Disagreements were discussed in a meeting resulting in consensus. Once all the surveys were edited, graduate assistants entered the surveys into the online survey collection tool. The data was then downloaded into an Excel file where it was cleaned, labeled, and duplicates were removed. The data set was then transferred to a statistical software package (SPSS 18.0) for analysis.
Of the 1,016 CRPs analyzed for this article, 83% described their organization as private non-profit. The remaining CRPs fell into the following categories: for-profit entities (8%), public state or tribal government (4%), public local (3%), and other (2%). The average total operations budget reported for employment and day services was $3,839,731 (n = 682, SD = 8,313,585).
CRPs reported serving a total of 201,672 individuals with all disabilities across employment and day services. Individuals with IDD represented a significant majority of people supported by CRPs. Seventy-five percent of those reported were individuals with IDD. The average number of individuals supported per CRP was 200 (SD = 321). Half of the surveyed CRPs supported 107 or fewer individuals, while 25% served between 241 and 5,826. The most individuals supported by a CRP were 5,826. One hundred and fourteen CRPs reported not serving anyone at the time of survey administration.
Most CRPs provided both employment and nonwork services, although a significant minority provided only work or only nonwork services. Sixty-nine percent (n = 695) of CRPs provided both employment and nonwork services. Nineteen percent (n = 195) offered employment services only, and 12% (n = 117) served individuals only in nonwork services. Overall, individual-supported employment was the most frequently reported employment service, followed by competitive employment. Facility-based nonwork was the most commonly offered nonwork service (Figure 1).
Distribution of Individuals by Service
CRPs were asked to report the number of individuals with any disability and the number of individuals with IDD for nine employment and four nonwork settings. Overall, individuals with all disabilities and individuals with IDD were more likely to be served in employment services than in nonwork services (see Table 2). However, for both groups, facility-based work was reported to be the largest employment service, and the majority of individuals were supported in facility-based and nonwork settings: 61% of individuals with any disability and 70% of people with IDD.
Out of all the respondent organizations, 900 CRPs provided employment services to a total of 126,528 individuals with any disability (Table 2). Thirty-six percent of individuals with any disability were supported in integrated employment (group and individual), with the highest number of individuals supported in individual-supported employment (14.2%) and followed closely by competitive employment with time-limited supports (13.4%). Overall, only 28% of individuals were supported in individual integrated employment, compared to 24% in the 2002–2003 CRP survey (Metzel et al., 2007).
The percent served in integrated employment was lower for individuals with IDD compared to individuals with any disability, at 28%. Individual-supported employment was also the most common integrated employment service (12.1%), serving almost twice as many individuals as competitive employment, which was the second most common integrated service (Table 2). Only 19% of individuals with IDD received individual integrated employment services, not much higher than the 18% found in the 2002–2003 CRP survey (Metzel et al., 2007).
Out of all the work and nonwork services that CRPs reported offering in FY 2010–2011, a quarter of individuals with IDD (25.2%) worked in facility-based employment, which was the most common service category for individuals with IDD. Ninety percent of those served in sheltered employment were individuals with IDD. In the 2002–2003 survey, CRPs reported serving 36% of people with IDD in sheltered work, suggesting a significant decrease in seven years (Metzel et al., 2007).
While individuals are more likely to be in individual-supported or competitive employment services, group supported employment (enclaves and mobile work crews) continues to play a smaller but significant role in employment supports for individuals with IDD. Almost 10% of individuals with IDD in this sample participated in group supported employment, or about one third of those in integrated employment.
Individuals reported as receiving a service may not be working for pay based on the stage of the employment process they are in. This is particularly true of short-term services such as competitive employment and relatively less true of long-term employment options such as group-supported employment. The majority of individuals with any disability in employment services were working for pay (76%, see Table 3). Individuals working in mobile crews were the most likely to be working for pay (96%), while people in competitive employment services were the least likely to receive compensation, although a significant majority did (61%).
A higher percent of people with IDD in all employment services were reported to be working for pay compared with people with any disability, reflecting the long-term nature of supports for many individuals with IDD. Eighty-eight percent of individuals with IDD in employment services were working for pay. Of the nine employment settings for which CRPs reported data, individuals with IDD were more likely to be working for pay in seven of the settings compared to people with any disability, including integrated employment services (83% and 73%, respectively).
A key policy question is, “how many individuals with IDD are working in the typical labor market and receiving a pay check?” Of all individuals with IDD who were reported to receive work or nonwork services, 15% were working for pay in individual integrated jobs (individual-supported or competitive employment).
Employment Services Trends
CRPs were asked to report whether they currently provide or have provided six types of employment services in the past three years. If a respondent answered in the affirmative, they were asked a follow-up question on whether the service increased, decreased, stayed the same, or was discontinued. Individual-supported employment was provided by the highest percent of CRPs (Figure 1). Seventy-one percent of organizations also reported that service provision in this area either increased or stayed the same in the past three years, and only 1% had discontinued the service (Figure 2).
As compared to other types of employment services, CRPs most frequently reported that competitive employment had increased in the past three years (47%), while facility-based work was the most frequently reported to have decreased (32%). Less than 1% of respondents reported that they had discontinued facility-based work. While it was the most frequently reported to have decreased, facility-based work was also reported to be increasing by 37% of respondents, although competitive and individual-supported employment were reported as increasing by a higher percent of respondents (Figure 2). The top three employment service settings that CRPs reported as increasing—competitive employment, individual-supported employment, and facility-based work—also served the largest number of individuals with any disability (Table 2).
Funding for Employment Services
CRPs were asked to report how many people were supported in employment services by various federal, state, and other funding sources. Medicaid waiver funds were the largest funding source for employment services. Respondents reported that a quarter (37,513 out of a total of 148,913) of the individuals who received employment services were funded by Medicaid waiver funds. State vocational rehabilitation agencies funded approximately 20% of individuals, while state IDD agencies provided financial support for 16% of those served. The remaining 39% were funded by welfare-to-work (11%), other sources (10%), state mental health agencies (7%), workforce development (3%), and self-pay (>1%). Seven percent were not funded at all.12
Despite the reported increase in integrated employment by CRPs in the past three years, a substantial number of people were being served in nonwork services. Facility-based nonwork was the most commonly reported service for people with any disability (23% served including services for the elderly) and for people with IDD (26%). Community-based nonwork served fewer individuals than facility-based nonwork for both disability groups.
Compared to the 2002–2003 survey, these data suggest that there has been growth in nonwork service participation for individuals with IDD. In 2002–2003, 33% of individuals with IDD were reported to be in nonwork services, compared to 43% in the current survey. This change has primarily been offset by a decline in the percent of individuals with IDD reported to be in facility-based work, dropping from 41% in 2002–2003 to 27.5% in the current survey. Overall the increase in nonwork services was higher for community-based nonwork: Participation in facility-based nonwork increased from 20% to 26%, while participation in community-based nonwork increased from 8% to 16% of all services.
CRPs providing nonwork services were asked to report on whether they currently provide or have provided two types of nonwork services in the past three years, facility-based nonwork and community-based nonwork. Eighty-five percent (n = 423) reported that community-based nonwork either increased or stayed the same over the past three years, and only 15% reported that it decreased or was discontinued. CRPs reported almost identical three-year trends for facility-based nonwork services: 84% increased or stayed the same and 16% decreased or discontinued the service (Figure 2).
There has been very little change in reported participation in integrated employment since the 2002–2003 survey for either individuals with any disability or individuals with IDD. Overall, 28% of individuals were supported in individual integrated employment, compared to 24% in the 2002–2003 survey (Metzel et al., 2007), suggesting only a slight increase in the number of individuals with all disabilities supported in this employment category. For individuals with IDD the percent reported in individual integrated employment only increased from 18% to 19%.
Differences in service participation between individuals with all disabilities and individuals with IDD likely reflect a relatively higher level of participation in short-term or transitional services, such as job placement supports supported by state vocational rehabilitation agencies for individuals with all disabilities, compared to a higher level of participation in long-term supports such as supported employment for individuals with IDD. Individuals with all disabilities had a lower reported percent working for pay in individual employment, for example, reflecting a higher likelihood of being in a career planning or job development stage of the employment process. In contrast, individuals with IDD working in individual integrated employment are more likely to continue receiving employment services to support job maintenance after placement.
The data reported by CRPs reflect a shift in investment in nonwork services and facility-based work. Respondents reported a large decline in participation in facility-based work, from 41% to 27.5%. It is unclear if this change reflects change in the service priorities of individuals and state IDD agencies or changes in the marketplace for work opportunities, but it documents a significant shift in resource allocation. Unfortunately, these resources have largely been allocated to a growth in nonwork services, currently reflecting 43% of all purchased services, and an even higher percent of funding. In FY 2010 only 10.5% of state IDD agency funding for day and employment services was allocated to integrated employment (Butterworth et al., 2011).
Within the category of nonwork services, there is growth in both facility-based nonwork and community-based nonwork. The rapid growth in community-based nonwork services, or community integration services, may reflect a growing emphasis on community presence, although the nature of the service that is being reported and the contribution of this service to community participation remains unclear. There is currently a limited amount of data on the structure, activities, and outcomes of this service, and research suggests that states have not established clear service expectations or quality-assurance strategies (Sulewski, 2010; Sulewski, Butterworth, & Gilmore, 2008). As the prevalence of coservices grows, additional research is needed on whether these services enhance or impede integrated employment outcomes and how community-based nonwork services contribute to meaningful daytime activities for individuals with IDD.
People with IDD are the largest customers of CRPs, representing 75% of all those served, a 5% increase since the 2002–2003 survey. Even though CRPs are more likely to report a decrease in facility-based work than other service models, it remains the most common employment outcome for individuals with IDD (25.2%), and only 19% of individuals with IDD receive individual integrated employment services, not much higher than the 18% found by the 2002–2003 survey. Improving employment outcomes requires attention to the policy commitments and priorities of state IDD agencies, to improving the capacity of the CRP community to provide high-quality supports, and to supporting individual choices and career paths.
Development of Employment First Initiatives
The data suggest a continued need to strengthen policy and resource commitments to integrated employment. The substantial state-to-state variation in participation in employment services among people with IDD receiving publicly funded services suggests that state policy, strategy, and investments have a significant effect on the numbers of people who are working in integrated community settings. While current national discussions emphasize the benefits of state Employment First policies, case studies of higher performing states suggest that policymakers need to provide a consistent message prioritizing employment and the goal of achieving paid work in integrated settings across all major human services and service system components including leadership, policy, financing, training and technical assistance, outcome and quality measurement, and interagency collaboration (Hall et al, 2007). States need to frame clear goals and take a holistic approach to building employment systems capacity.
Planning for wrap-around supports
People working in individual jobs who are supported by state IDD agencies average less than 15 hours per week (Human Services Research Institute, 2012). This finding clearly underscores the need for states and CRPs to develop policies and practices that encourage full-time employment and increased economic self-sufficiency in order to expand individual work hours. It also suggests that state agency administrators, planners, and operational staff must collaborate with community rehabilitation providers, home and residential support agencies, and others in the development and implementation of holistic approaches to person-centered life planning that includes nonwork hours. Typically, work takes place at all hours of the day throughout the workweek and workers organize their lives and activities around their jobs, families, and home responsibilities. People with IDD are frequently prevented from working at nights and on weekends because the lack of flexibility in the structure of their service delivery systems do not ensure the availability of staff to assist them at work during these periods. The need for a stronger focus on expanding employment opportunities is underscored by research that suggests that over one third of individuals in paid community jobs also participated in another day activity, most often an unpaid day activity (Human Services Research Institute, 2012). While the lack of full-time employment may be the result of an array of individual, regulatory, and financial factors, several states are addressing this issue through targeted regulatory, funding, and system changes.
Prioritizing individual jobs over group supported employment
Data suggest that individual employment yields higher levels of income and a wider array of job choices than does group-supported employment, despite the fact that people in group supported-employment work more hours on average (Boeltzig, Timmons, & Butterworth, 2008; Human Services Research Institute, 2012). Individuals in group-supported employment are also more likely to report that they want to work elsewhere (Human Services Research Institute, 2012). The benefits and advantages of individual employment should be reflected in policy and operational practices that prioritize individual employment outcomes.
Supporting career goals
National data suggest that almost half of individuals who are not working in the community want a job but that only 28% of those who want a job have community employment as a goal in their service plan (Human Services Research Institute, 2012), and Migliore, Grossi, Mank, and Rogan (2008) reported that the majority of individuals working in sheltered workshops expressed a preference for community employment. A key component of employment first initiatives, and of state-specific efforts to improve employment outcomes, is a focus on ensuring that employment is identified as a priority during each individual's person-centered service plan and on the provision of training to case managers or service coordinators to enable them to become skilled in facilitating conversations about employment and in addressing individual and family concerns about community employment.
This manuscript is a product of Access to Integrated Employment, a project of the Institute for Community Inclusion, and was supported in part by the Administration on Developmental Disabilities, U.S. Department of Health and Human Services, under cooperative agreement #90DN0295 and the National Institute on Disability and Rehabilitation Research (NIDRR) and Rehabilitation Services Administration (RSA), U.S. Department of Education (#H133B070001). The opinions contained in this report are those of the grantee and do not necessarily reflect those of the funders. The authors express their thanks to the 1,309 CRPs that responded to the survey and to our colleagues who supported completion of this research: Frank Smith, Heike Boeltzig, and Kelly Haines.
Individuals may be represented in more than one category.
Editor-in-Charge: Glenn Fujiura
John Butterworth (e-mail: firstname.lastname@example.org), Institute for Community Inclusion, University of Massachusetts Boston, 100 Morrissey Boulevard, Boston, MA 02125, USA; Daria Domin, University of Massachusetts Boston.