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The Role of Community Rehabilitation Providers in Employment for Persons With Intellectual and Developmental Disabilities: Results of the 2010-2011 National Survey Daria Domin and John Butterworth
Abstract 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 11.5% and a concurrent growth in participation in nonwork services to 43% of all purchased services. Key Words: intellectual disability; developmental disability; community rehabilitation provider; integrated employment; fadlity'based work; facility-based non-work; community - based non-work
Community rehabilitation providers (CRPs) and their staff are the primary source of employment supports for people with intellectual and developmental disabilities (IDD). Defined as communitybased 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..
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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, HagenFoley, Botterbuscb, 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 witb 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
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Table 1 Distribution of Services by T)ipe and Location Employment
Nonwork
Programs where people with disabilities spend Community based Individual integrated employment the majority of their day in the community Competitive empioyment, individualsupported empioyment, self-empioyment in places where most people do not have disabilities. The primary focus may include Group supported employment general community activities, volunteer Enclaves, mobile work crews experiences, recreation and leisure, Short-term work experiences improving psychosocial skills, or engaging Transitionai employment for people witii in activities of daily iiving. mental iilness, time-limited paid work experience • Community-based nonwork • Community-based nonwork for the elderly Includes psychosociai skills, activities of daily Facility based Employment in a facility where most living, recreation, and/or professional people have disabilities, with ongoing therapies. Includes day habilitation, medical work-related supports and supervision day care, and day activity programs. • Facility-based work • NISH/National Industries for the Biind • Facility-based nonwork • Faciiity-based nonwork for the eiderly 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 heen 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 availahility. Rogan and Rinne (2011) found that agencies that successfully converted their
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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
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used to support the shift to community services were found to he common factors in the organizational change process. The purpose of this study was to identify and describe employment and nonwork services provided hy 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 disahilities 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 disahilities.
Data Collection and Methods Instrument Development 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 he 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 numhers were in tahle format. The original fulllength 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 disahility type. The section also asked respondents to answer questions about the ttend for the numher served over the previous three years for six of the nine employment settings. Section C addressed nonwork services including the numher served in each of
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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 disahility (IDD) as it is used in this survey. Services are descrihed in this manuscript according to the two primary dimensions of type of service (employment or nonwork) and location (community based or facility hased). The distrihution of services for analysis is identified in Tahle 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.
Survey Population 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 disahilities. 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 Cerehral 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.
Sampling Method 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. Eor states that had fewer than 100 organizations on the list, every identified CRP was included in the sample. Eor states with at least 100 CRPs, a simple random sampling approach was used, and 100 organizations were
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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, postagepaid 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 tbe 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 tbe end of February 2011.
Survey Response During tbe survey implementation process, CRPs in the sample that were determined ineligible were
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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 tbat refused to participate in tbe study—a total of 262. Once a CRP refused, they were removed from follow-up efforts and future mailings. From tbe 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 tbe 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. Tbe 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 cbecked weekly and entered as received as well. After tbe survey closed, paper surveys were bundled into packets of 10. A coding scbeme for addressing errors and missing data was developed, and each survey was reviewed and edited by two survey team members. Cases witb missing data were excluded from analyses. Disagreements were discussed in a meeting resulting in consensus. Once all tbe surveys were edited, graduate assistants entered the
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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.
Findings CRP Characteristics 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. Eacility-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
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individuals were supported in facility-based and nonwork settings: 61% of individuals with any disability and 70% of people with IDD.
Employment Services 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%. Individualsupported 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 facilitybased 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
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Employment Services Individual supported employment {n=845)
81.3%
Competitive employment (n=831)
•
Facility-based work (n=819)
70.3% 67.2%
Enclaves (n=794)
• 42.8%
Mobile crews (n=786)
41.3%
Time-limited paid work experience {n=772) Self-employment (n=772) Transitional employment for people with mental illness (n=769) NISH/National Industries for the Blind (n=754) Non-work Services Facility-based non-work {n=726)
3
Community-based non-work {n=713) Facility-based non-work for elderly (n=630) Community-based non-work for elderly (n=636)
81.4%
H 64.9% J 32.7% 22.6%
Figure I. Percent of CRPs providing services. 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 tbe most likely to be working for pay (96%), wbile people in competitive employment services were the least likely to receive compensation, although a significant majority did (61%). A higher percent of people witb 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 witb 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 (individualsupported or competitive 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 tbe most frequently reported to have decreased (32%). Less than 1% of respondents reported that they had discontinued facility-based work. Wbile 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 bigber 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).
Employment Services Trends
Funding for Employment Services
CRPs were asked to report whether they currently provide or have provided six types of employment
CRPs were asked to report bow many people were supported in employment services by various federal.
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Table 2 Total Individuals Currently Served in Work and Nonwork Services Type of service setting
Total with IDD
% with IDD
20.7% 14.3% 13.4% 5.4% 2.5% 3.5% 1.5% 1.2% 0.4% 62.7%
37,810 18,255 9,766 9,507 4,863 3,433 1,142 752 510 86,038
25.2% 12.i% 6.5% 6.3% 3.2% 2.3% 0.8% 0.5% 0.3% 57.2%
21.1% 12.8% 1.98% 1.37% 37.3% 100.00%
36,259 22,903 3,398 1,733 64,293 150,330
24.1% 15.2% 2.3% 1.2% 42.8% 100.0%
Total with any disability
% with any disability
41,803 28,763 27,087 10,784 5,052 6,950 2,925 2,389 775 126,528 42,489 25,901 3,999 2,754 75,143 201,672
Employment services Facility-based work* Individual-supported empioyment Competitive employment with time-iimited supports Enciaves Mobiie crews NISH/National Industries for the Blind* Transitional employment for people with mental illness Time-limited paid work experience Seif-empioyment (entrepreneurism) Totai employment Nonwork services Faciiity-based nonwork* Community-based nonwork* Faciiity-based nonwork for eiderly* Community-based nonwork for elderiy* Totai nonwork Total reported**
*Denotes faciiity-based and nonwork service settings. **Totai reported will include dupiication of services in cases where a re:sDondent reco rds an individual in mo than one category.
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.'^
Nonwork Services Despite the reported increase in integrated employment hy CRPs in the past three years, a substantial number of
' Funding sources were not reported by all respondents, so the total served does not match what is displayed in Table 2. ' Individuals may be represented in more than one category.
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people were being served in nonwork services. Facilitybased 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 he 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 facilitybased 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.
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Table 3 Percent in Paid Work by Service
Service Facility-based work Individual-supported employment Competitive employment with time-limited supports Enclaves Mobile crews NISH/National Industries for the Blind Transitional employment for people with mental illness Time-limited paid work experience Self-employment (entrepreneurism) Total 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 -hased 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
Any disability
Persons with IDD
80.5% 71.7% 60.9% 93.0% 96.1% 87.6% 72.0% 77.9% 70.9% 76.1%
91.7% 80.1% 77.0% 90.6% 94.5% 95.7% 78.9% 89.8% 90.2% 87.6%
three-year trends for facility-based nonwork services: 84% increased or stayed the same and 16% decreased or discontinued the service (Figure 2).
Discussion 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
] 46.6% Competitive employment (n=651 )
Individual supported employment (n=703)
Facility-based work (n=588)
nIncreased • Stayed the same • Decreased • Discontinued
Enclaves (n=353)
45.6%
Mobile crews (n=333)
49.7%
Self-employment (n=203) 2.1%
Figure 2. Trends in employment service provision in the past three years.
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individuals were supported in individual integrated employment, compared to 24% in tbe 2002-2003 survey (Metzel et al., 2007), suggesting only a sligbt increase in tbe number of individuals witb all disabilities supported in tbis employment category. For individuals with IDD tbe percent reported in individual integrated employment only increased from 18% to 19%. Differences in service participation between individuals witb all disabilities and individuals witb IDD likely reflect a relatively bigher level of participation in short-term or transitional services, sucb as job placement supports supported by state vocational rebabilitation agencies for individuals witb all disabilities, compared to a bigber level of participation in long-term supports sucb as supported employment for individuals witb IDD. Individuals witb all disabilities bad a lower reported percent working for pay in individual employment, for example, reflecting a bigber likelihood of being in a career planning or job development stage of tbe 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. Tbe data reported by CRPs reflect a sbift 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 tbis change reflects cbange in tbe service priorities of individuals and state IDD agencies or cbanges in tbe marketplace for work opportunities, but it documents a significant sbift in resource allocation. Unfortunately, these resources have largely been allocated to a growtb in nonwork services, currently reflecting 43% of all purcbased services, and an even bigber percent of funding. In FY 2010 only 10.5% of state IDD agency funding for day and employment services was allocated to integrated employment (Butterwortb et al., 2011). Witbin tbe category of nonwork services, tbere is growtb in botb facility-based nonwork and community-based nonwork. Tbe rapid growtb in community-based nonwork services, or community integration services, may reflect a growing empbasis on community presence, although the nature of tbe service tbat is being reported and the contribution of tbis service to community participation remains unclear. Tbere is currently a limited amount of data on tbe structure, activities, and outcomes of tbis service, and research suggests tbat states have not
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establisbed clear service expectations or qualityassurance strategies (Sulewski, 2010; Sulewski, Butterworth, & Cilmore, 2008). As tbe prevalence of coservices grows, additional research is needed on wbetber these services enhance or impede integrated employment outcomes and bow community-based nonwork services contribute to meaningful daytime activities for individuals witb IDD. People witb IDD are tbe largest customers of CRPs, representing 75% of all tbose served, a 5% increase since tbe 2002—2003 survey. Even tbougb CRPs are more likely to report a decrease in facility-based work tban otber service models, it remains the most common employment outcome for individuals witb IDD (25.2%), and only 19% of individuals witb IDD receive individual integrated employment services, not much bigber tban tbe 18% found by tbe 2002-2003 survey. Improving employment outcomes requires attention to tbe policy commitments and priorities of state IDD agencies, to improving tbe capacity of tbe CRP community to provide bigb-quality supports, and to supporting individual cboices and career patbs.
Development of Employment First Initiatives Tbe data suggest a continued need to strengtben policy and resource commitments to integrated employment. Tbe substantial state-to-state variation in participation in employment services among people witb IDD receiving publicly funded services suggests tbat state policy, strategy, and investments bave a significant effect on the numbers of people who are working in integrated community settings. Wbile current national discussions empbasize tbe benefits of state Employment First policies, case studies of bigber performing states suggest tbat policymakers need to provide a consistent message prioritizing employment and tbe goal of achieving paid work in integrated settings across all major buman services and service system components including leadersbip, 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 bolistic approach to building employment systems capacity. Planning for wrap-around supports. People working in individual jobs wbo are supported by state IDD agencies average less tban 15 bours per
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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 personcentered 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, Crossi, Mank, and Rogan (2008) reported that the majority
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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.
References Boeltzig, H., Timmons, J. C , & Butterworth, J. (2008). Entering work: Employment outcomes of people with developmental disabilities. International journal of Rehabilitation Research,
3J (3), 217-223. Brooks-Lane, N., Hutcheson, S., & Revell, C. (2005). Supporting consumer-directed employment outcomes, journal of Vocational Rehabilitation, 23, 123-134. Brown, L., Shiraga, B., & Kessler, K. (2006). The quest for ordinary lives: The integrated postschool vocational functioning of 50 workers with significant disabilities. Research & Practice for Persons with Severe Disabilities, 31(2), 9 3 121. Butterworth, J., Fesko, S. L., & Ma, V. (2000). Because it was the right thing to do: Changeover from facility-based services to community employment. Journal of Vocational Rehabilita-
tion, 14(1), 23-35. Butterworth, J., Cilmore, D. S., Timmons, J. C , Inge, K. J., «Si Revell, C. (2007). Community rehabilitation programs: The relationships between organizational characteristics and employment
outcomes. Washington, DC: U.S Department of Labor, Office for Disability Employment Policy. Butterworth, J., Hall, A. C , Smith, F. A., Migliore, A., Winsor, J., Timmons, J., & Domin, D. (2011). StateData: The national report on employment services and outcomes. Boston,
MA: Institute for Community Inclusion, University of Massachusetts Boston. Haines, K., & Domin, D. (2013). The 2010/2011 national survey of community rehabilitation providers: Estimating the number of community rehabil-
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itaxion providers in the United States. Research to Practice, Boston, MA: University of Massachusetts, Institute for Community Inclusion. Hall, A. C , Butterworth, J., Winsor, J., Gilmore, D., & Metzel, D. (2007). Pushing the employment agenda: Case study research of high performing states in integrated employment. Intellectual and Developmental Disabilities, 45(3), 182-198. Human Services Research Institute (2012). Working in the community: The status and outcomes of people with intellectual and developmental disabilities in integrated employment. (NCI Data Brief, October 2012). Cambridge, MA: Human Services Researcb Institute. Inge, K. ]., Wehman, P., Revell, C , Erickson, D., Butterwortb, J., & Cilmore, D. S. (2009). Survey results from a national survey of community rebabilitation providers bolding special wage certificates. Journal of Vocational RehabÛitadon, 30(2), 67-85. Menz, F., Hagen-Foley, D., Botterbuscb, K., Thomas, D., & Radtke, J. (2002, Febmary). Modeb for achieving employment outcomes: Preliminary results. Paper presented at tbe CARF Employment Conference, Tucson, AZ. Metzel, D. S., Boeltzig, H., Butterwortb, J., Sulewski, J., & Gilmore, D. S. (2007). Achieving community membership through community rehabilitation provider services: Are we there yet? Intellectual and Developmental Disabilities, 45(3), 149-169. Migliore, A., Grossi, T., Mank, D., &. Rogan, P. M. (2008). Wby do adults with intellectual disabilities work in sheltered workshops? Journal of Vocational Rehabilitation, 28, 2 9 ^ 0 . Rogan, P., & Rinne, S. (2011). National call for organizational change from sheltered to integrated employment. Intellectual and Developmental Disabilities, 49(4), 248-260. Rusch, F., & Braddock, D. (2004). Adult day programs versus supported employment (1988-2002): Spending and service practices
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of mental retardation and developmental disabilities state agencies. Research & Practice for Persons with Severe Disabilities, 29(4), 237242. Sulewski, J. S. (2010). In search of meaningful daytimes: Case studies of community-based non-work supports. Research & Practice for Persons with Seigere Disabilities, 35(1-2), 39-54. Sulewski, J. S., Butterwortb, ]. & Gilmore, D. S. (2008). Community-based non-work supports: findings from tbe national survey of day and employment programs for people with developmental disabilities. Intellectual and Develop' mental Disabilities, 46(6), 456-467.
Submitted 2/5/13, first decision 5/31/13, final decision 6/4/13. Editor-in-Charge: Glenn Fujiura 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 (KSA), U.S. Department of Education (#H133B07000J). 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.
Authors: Jobn Butterworth (e-mail: john.butterworth@umb. edu). Institute for Community Inclusion, University of Massacbusetts Boston, 100 Morrissey Boulevard, Boston, MA 02125, USA; Daria Domin, University of Massacbusetts Boston.
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The Role of Community Rehabilitation Providers in Employment for Persons With Intellectual and Developmental Disabilities: Results of the 2010-2011 National Survey Daria Domin and John Butterworth
Abstract 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 11.5% and a concurrent growth in participation in nonwork services to 43% of all purchased services. Key Words: intellectual disability; developmental disability; community rehabilitation provider; integrated employment; fadlity'based work; facility-based non-work; community - based non-work
Community rehabilitation providers (CRPs) and their staff are the primary source of employment supports for people with intellectual and developmental disabilities (IDD). Defined as communitybased 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..
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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, HagenFoley, Botterbuscb, 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 witb 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
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Table 1 Distribution of Services by T)ipe and Location Employment
Nonwork
Programs where people with disabilities spend Community based Individual integrated employment the majority of their day in the community Competitive empioyment, individualsupported empioyment, self-empioyment in places where most people do not have disabilities. The primary focus may include Group supported employment general community activities, volunteer Enclaves, mobile work crews experiences, recreation and leisure, Short-term work experiences improving psychosocial skills, or engaging Transitionai employment for people witii in activities of daily iiving. mental iilness, time-limited paid work experience • Community-based nonwork • Community-based nonwork for the elderly Includes psychosociai skills, activities of daily Facility based Employment in a facility where most living, recreation, and/or professional people have disabilities, with ongoing therapies. Includes day habilitation, medical work-related supports and supervision day care, and day activity programs. • Facility-based work • NISH/National Industries for the Biind • Facility-based nonwork • Faciiity-based nonwork for the eiderly 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 heen 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 availahility. Rogan and Rinne (2011) found that agencies that successfully converted their
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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
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used to support the shift to community services were found to he common factors in the organizational change process. The purpose of this study was to identify and describe employment and nonwork services provided hy 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 disahilities 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 disahilities.
Data Collection and Methods Instrument Development 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 he 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 numhers were in tahle format. The original fulllength 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 disahility type. The section also asked respondents to answer questions about the ttend for the numher served over the previous three years for six of the nine employment settings. Section C addressed nonwork services including the numher served in each of
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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 disahility (IDD) as it is used in this survey. Services are descrihed in this manuscript according to the two primary dimensions of type of service (employment or nonwork) and location (community based or facility hased). The distrihution of services for analysis is identified in Tahle 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.
Survey Population 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 disahilities. 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 Cerehral 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.
Sampling Method 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. Eor states that had fewer than 100 organizations on the list, every identified CRP was included in the sample. Eor states with at least 100 CRPs, a simple random sampling approach was used, and 100 organizations were
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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, postagepaid 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 tbe 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 tbe end of February 2011.
Survey Response During tbe survey implementation process, CRPs in the sample that were determined ineligible were
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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 tbat refused to participate in tbe study—a total of 262. Once a CRP refused, they were removed from follow-up efforts and future mailings. From tbe 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 tbe 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. Tbe 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 cbecked weekly and entered as received as well. After tbe survey closed, paper surveys were bundled into packets of 10. A coding scbeme for addressing errors and missing data was developed, and each survey was reviewed and edited by two survey team members. Cases witb missing data were excluded from analyses. Disagreements were discussed in a meeting resulting in consensus. Once all tbe surveys were edited, graduate assistants entered the
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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.
Findings CRP Characteristics 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. Eacility-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
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individuals were supported in facility-based and nonwork settings: 61% of individuals with any disability and 70% of people with IDD.
Employment Services 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%. Individualsupported 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 facilitybased 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
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Employment Services Individual supported employment {n=845)
81.3%
Competitive employment (n=831)
•
Facility-based work (n=819)
70.3% 67.2%
Enclaves (n=794)
• 42.8%
Mobile crews (n=786)
41.3%
Time-limited paid work experience {n=772) Self-employment (n=772) Transitional employment for people with mental illness (n=769) NISH/National Industries for the Blind (n=754) Non-work Services Facility-based non-work {n=726)
3
Community-based non-work {n=713) Facility-based non-work for elderly (n=630) Community-based non-work for elderly (n=636)
81.4%
H 64.9% J 32.7% 22.6%
Figure I. Percent of CRPs providing services. 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 tbe most likely to be working for pay (96%), wbile people in competitive employment services were the least likely to receive compensation, although a significant majority did (61%). A higher percent of people witb 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 witb 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 (individualsupported or competitive 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 tbe most frequently reported to have decreased (32%). Less than 1% of respondents reported that they had discontinued facility-based work. Wbile 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 bigber 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).
Employment Services Trends
Funding for Employment Services
CRPs were asked to report whether they currently provide or have provided six types of employment
CRPs were asked to report bow many people were supported in employment services by various federal.
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Table 2 Total Individuals Currently Served in Work and Nonwork Services Type of service setting
Total with IDD
% with IDD
20.7% 14.3% 13.4% 5.4% 2.5% 3.5% 1.5% 1.2% 0.4% 62.7%
37,810 18,255 9,766 9,507 4,863 3,433 1,142 752 510 86,038
25.2% 12.i% 6.5% 6.3% 3.2% 2.3% 0.8% 0.5% 0.3% 57.2%
21.1% 12.8% 1.98% 1.37% 37.3% 100.00%
36,259 22,903 3,398 1,733 64,293 150,330
24.1% 15.2% 2.3% 1.2% 42.8% 100.0%
Total with any disability
% with any disability
41,803 28,763 27,087 10,784 5,052 6,950 2,925 2,389 775 126,528 42,489 25,901 3,999 2,754 75,143 201,672
Employment services Facility-based work* Individual-supported empioyment Competitive employment with time-iimited supports Enciaves Mobiie crews NISH/National Industries for the Blind* Transitional employment for people with mental illness Time-limited paid work experience Seif-empioyment (entrepreneurism) Totai employment Nonwork services Faciiity-based nonwork* Community-based nonwork* Faciiity-based nonwork for eiderly* Community-based nonwork for elderiy* Totai nonwork Total reported**
*Denotes faciiity-based and nonwork service settings. **Totai reported will include dupiication of services in cases where a re:sDondent reco rds an individual in mo than one category.
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.'^
Nonwork Services Despite the reported increase in integrated employment hy CRPs in the past three years, a substantial number of
' Funding sources were not reported by all respondents, so the total served does not match what is displayed in Table 2. ' Individuals may be represented in more than one category.
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people were being served in nonwork services. Facilitybased 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 he 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 facilitybased 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.
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DOI: 10.1352/1934-9556-51.4.215
Table 3 Percent in Paid Work by Service
Service Facility-based work Individual-supported employment Competitive employment with time-limited supports Enclaves Mobile crews NISH/National Industries for the Blind Transitional employment for people with mental illness Time-limited paid work experience Self-employment (entrepreneurism) Total 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 -hased 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
Any disability
Persons with IDD
80.5% 71.7% 60.9% 93.0% 96.1% 87.6% 72.0% 77.9% 70.9% 76.1%
91.7% 80.1% 77.0% 90.6% 94.5% 95.7% 78.9% 89.8% 90.2% 87.6%
three-year trends for facility-based nonwork services: 84% increased or stayed the same and 16% decreased or discontinued the service (Figure 2).
Discussion 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
] 46.6% Competitive employment (n=651 )
Individual supported employment (n=703)
Facility-based work (n=588)
nIncreased • Stayed the same • Decreased • Discontinued
Enclaves (n=353)
45.6%
Mobile crews (n=333)
49.7%
Self-employment (n=203) 2.1%
Figure 2. Trends in employment service provision in the past three years.
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individuals were supported in individual integrated employment, compared to 24% in tbe 2002-2003 survey (Metzel et al., 2007), suggesting only a sligbt increase in tbe number of individuals witb all disabilities supported in tbis employment category. For individuals with IDD tbe percent reported in individual integrated employment only increased from 18% to 19%. Differences in service participation between individuals witb all disabilities and individuals witb IDD likely reflect a relatively bigher level of participation in short-term or transitional services, sucb as job placement supports supported by state vocational rebabilitation agencies for individuals witb all disabilities, compared to a bigber level of participation in long-term supports sucb as supported employment for individuals witb IDD. Individuals witb all disabilities bad a lower reported percent working for pay in individual employment, for example, reflecting a bigber likelihood of being in a career planning or job development stage of tbe 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. Tbe data reported by CRPs reflect a sbift 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 tbis change reflects cbange in tbe service priorities of individuals and state IDD agencies or cbanges in tbe marketplace for work opportunities, but it documents a significant sbift in resource allocation. Unfortunately, these resources have largely been allocated to a growtb in nonwork services, currently reflecting 43% of all purcbased services, and an even bigber percent of funding. In FY 2010 only 10.5% of state IDD agency funding for day and employment services was allocated to integrated employment (Butterwortb et al., 2011). Witbin tbe category of nonwork services, tbere is growtb in botb facility-based nonwork and community-based nonwork. Tbe rapid growtb in community-based nonwork services, or community integration services, may reflect a growing empbasis on community presence, although the nature of tbe service tbat is being reported and the contribution of tbis service to community participation remains unclear. Tbere is currently a limited amount of data on tbe structure, activities, and outcomes of tbis service, and research suggests tbat states have not
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establisbed clear service expectations or qualityassurance strategies (Sulewski, 2010; Sulewski, Butterworth, & Cilmore, 2008). As tbe prevalence of coservices grows, additional research is needed on wbetber these services enhance or impede integrated employment outcomes and bow community-based nonwork services contribute to meaningful daytime activities for individuals witb IDD. People witb IDD are tbe largest customers of CRPs, representing 75% of all tbose served, a 5% increase since tbe 2002—2003 survey. Even tbougb CRPs are more likely to report a decrease in facility-based work tban otber service models, it remains the most common employment outcome for individuals witb IDD (25.2%), and only 19% of individuals witb IDD receive individual integrated employment services, not much bigber tban tbe 18% found by tbe 2002-2003 survey. Improving employment outcomes requires attention to tbe policy commitments and priorities of state IDD agencies, to improving tbe capacity of tbe CRP community to provide bigb-quality supports, and to supporting individual cboices and career patbs.
Development of Employment First Initiatives Tbe data suggest a continued need to strengtben policy and resource commitments to integrated employment. Tbe substantial state-to-state variation in participation in employment services among people witb IDD receiving publicly funded services suggests tbat state policy, strategy, and investments bave a significant effect on the numbers of people who are working in integrated community settings. Wbile current national discussions empbasize tbe benefits of state Employment First policies, case studies of bigber performing states suggest tbat policymakers need to provide a consistent message prioritizing employment and tbe goal of achieving paid work in integrated settings across all major buman services and service system components including leadersbip, 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 bolistic approach to building employment systems capacity. Planning for wrap-around supports. People working in individual jobs wbo are supported by state IDD agencies average less tban 15 bours per
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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 personcentered 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, Crossi, Mank, and Rogan (2008) reported that the majority
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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.
References Boeltzig, H., Timmons, J. C , & Butterworth, J. (2008). Entering work: Employment outcomes of people with developmental disabilities. International journal of Rehabilitation Research,
3J (3), 217-223. Brooks-Lane, N., Hutcheson, S., & Revell, C. (2005). Supporting consumer-directed employment outcomes, journal of Vocational Rehabilitation, 23, 123-134. Brown, L., Shiraga, B., & Kessler, K. (2006). The quest for ordinary lives: The integrated postschool vocational functioning of 50 workers with significant disabilities. Research & Practice for Persons with Severe Disabilities, 31(2), 9 3 121. Butterworth, J., Fesko, S. L., & Ma, V. (2000). Because it was the right thing to do: Changeover from facility-based services to community employment. Journal of Vocational Rehabilita-
tion, 14(1), 23-35. Butterworth, J., Cilmore, D. S., Timmons, J. C , Inge, K. J., «Si Revell, C. (2007). Community rehabilitation programs: The relationships between organizational characteristics and employment
outcomes. Washington, DC: U.S Department of Labor, Office for Disability Employment Policy. Butterworth, J., Hall, A. C , Smith, F. A., Migliore, A., Winsor, J., Timmons, J., & Domin, D. (2011). StateData: The national report on employment services and outcomes. Boston,
MA: Institute for Community Inclusion, University of Massachusetts Boston. Haines, K., & Domin, D. (2013). The 2010/2011 national survey of community rehabilitation providers: Estimating the number of community rehabil-
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itaxion providers in the United States. Research to Practice, Boston, MA: University of Massachusetts, Institute for Community Inclusion. Hall, A. C , Butterworth, J., Winsor, J., Gilmore, D., & Metzel, D. (2007). Pushing the employment agenda: Case study research of high performing states in integrated employment. Intellectual and Developmental Disabilities, 45(3), 182-198. Human Services Research Institute (2012). Working in the community: The status and outcomes of people with intellectual and developmental disabilities in integrated employment. (NCI Data Brief, October 2012). Cambridge, MA: Human Services Researcb Institute. Inge, K. ]., Wehman, P., Revell, C , Erickson, D., Butterwortb, J., & Cilmore, D. S. (2009). Survey results from a national survey of community rebabilitation providers bolding special wage certificates. Journal of Vocational RehabÛitadon, 30(2), 67-85. Menz, F., Hagen-Foley, D., Botterbuscb, K., Thomas, D., & Radtke, J. (2002, Febmary). Modeb for achieving employment outcomes: Preliminary results. Paper presented at tbe CARF Employment Conference, Tucson, AZ. Metzel, D. S., Boeltzig, H., Butterwortb, J., Sulewski, J., & Gilmore, D. S. (2007). Achieving community membership through community rehabilitation provider services: Are we there yet? Intellectual and Developmental Disabilities, 45(3), 149-169. Migliore, A., Grossi, T., Mank, D., &. Rogan, P. M. (2008). Wby do adults with intellectual disabilities work in sheltered workshops? Journal of Vocational Rehabilitation, 28, 2 9 ^ 0 . Rogan, P., & Rinne, S. (2011). National call for organizational change from sheltered to integrated employment. Intellectual and Developmental Disabilities, 49(4), 248-260. Rusch, F., & Braddock, D. (2004). Adult day programs versus supported employment (1988-2002): Spending and service practices
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of mental retardation and developmental disabilities state agencies. Research & Practice for Persons with Severe Disabilities, 29(4), 237242. Sulewski, J. S. (2010). In search of meaningful daytimes: Case studies of community-based non-work supports. Research & Practice for Persons with Seigere Disabilities, 35(1-2), 39-54. Sulewski, J. S., Butterwortb, ]. & Gilmore, D. S. (2008). Community-based non-work supports: findings from tbe national survey of day and employment programs for people with developmental disabilities. Intellectual and Develop' mental Disabilities, 46(6), 456-467.
Submitted 2/5/13, first decision 5/31/13, final decision 6/4/13. Editor-in-Charge: Glenn Fujiura 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 (KSA), U.S. Department of Education (#H133B07000J). 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.
Authors: Jobn Butterworth (e-mail: john.butterworth@umb. edu). Institute for Community Inclusion, University of Massacbusetts Boston, 100 Morrissey Boulevard, Boston, MA 02125, USA; Daria Domin, University of Massacbusetts Boston.
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