This article presents findings on community-based nonwork (CBNW; activities that do not involve paid employment but take place in the community) from a 2001 survey of state intellectual disabilities/developmental disabilities agency directors. Survey responses indicated that CBNW is a considerable and growing part of the day services mix but that it is loosely defined with respect to requirements, activities, populations served, and goals. Although CBNW has the potential to enhance the lives of people with disabilities, these findings raise some concerns, including how quality can be assured when supports are loosely defined, how CBNW can be provided without taking resources away from supported employment, and whether community connections can be made when people are supported in groups.
Over the past 30 years, services and supports for people with developmental disabilities have increasingly emphasized inclusion and participation in society. Institutions have closed or downsized, and increasing numbers of people with developmental disabilities have been supported to live and work in the community. In 2004, over 70% of residential service recipients were living in settings of six or fewer residents (Coucouvanis, Prouty, & Lakin, 2005) compared with 13% in 1982 (Lakin, Prouty, Polister, & Anderson, 2000). Likewise, from 1988 to 2004, the national percentage of individuals receiving day services in integrated employment settings increased from 13% to 23% (Institute for Community Inclusion, 2007). Meanwhile, key legislation, such as the Americans With Disabilities Act and the Developmental Disabilities Assistance and Bill of Rights Act of 2000, has emphasized the rights of people with disabilities to full participation and membership in society.
In day services and supports, two service types exemplify the move toward community participation: supported employment and community-based nonwork. Community-based nonwork (CBNW), also known as community integration or community participation, includes non–job-related supports focused on community involvement. Activities may include volunteer work, participation in community recreation or education programs, life skills training, and general community exploration. Whereas there has been extensive research on policies, practices, and outcomes of community-based employment since the 1980s, there has been almost none on CBNW. This article presents findings from a survey module that addressed the roles and definitions of CBNW at the state agency level.
Previous Studies of CBNW
Although CBNW is part of the service mix in numerous locations across the country, very little research literature exists on the topic of nonwork supports in the community. There have, however, been a handful of studies that have provided some insights into the potential and challenges of CBNW.
Most notably, several individual CBNW success stories at the provider agency level were produced in the late 1990s by the Center on Human Policy at Syracuse University (Hall & Walker, 1997; Hulgin & Searle, 1996; Walker, 1998, 2000). Walker (2007) later developed a summary of key components and support strategies for meaningful leisure and social activities. In addition, Sowers, Dean, and Holsapple (1999) conducted site visits of 15 sites providing “alternatives to employment” services, which, at the time, was the primary service type for 22% of recipients of day services in Oregon.
In most of these cases, CBNW had emerged as a way to augment employment services by providing other options for community involvement, especially for people with severe disabilities (Hall & Walker, 1997; Hulgin & Searle, 1996; Sowers, Dean, & Holsapple, 1999; Walker, 2000, 2007). Walker (2007) noted that people with the most severe disabilities often do not have integrated employment, have limited hours of work, or do not have meaningful jobs of their choosing; consequently, “It is important for many people to have various community connections and engagements, either in addition to or instead of work that can contribute to a meaningful day” (p. 76).
A common challenge across the case studies was finding meaningful activities that fostered community integration and relationships (Hall & Walker, 1997; Sowers, Dean, & Holsapple, 1999). In a qualitative study focused on social capital for individuals with intellectual disabilities, Cohen (2005) found that community presence through CBNW activities does not always equal participation and that real relationships with community members may be very difficult to form. An additional challenge was deciding when and to what extent the use of agency-owned sites was appropriate (Hall & Walker, 1997; Walker, 1998, 2000). For example, Hall and Walker (1997) found that closure of the day facility at Common Ground (Littleton, NH) had both advantages (forcing staff to be more creative about finding community-based options) and disadvantages (forcing individuals to deal with transportation issues and bad weather to be “in the community” at all times).
These similarities indicate that certain issues (i.e., finding meaningful activities, determining the role of facilities, and helping people build relationships) are present in multiple CBNW programs across the country and could potentially be addressed by state policy.
Possible Roles of CBNW
If properly implemented, CBNW has potential to enhance quality of life for people with disabilities. Halpern (1993), on the basis of a review of 41 postschool follow-up studies of young adults with disabilities, recommended that programs and evaluations should “attend more regularly to the full array of adult roles that comprise quality of life” (p. 497). In addition, research on recreation (Draheim, Williams, & McCubbin, 2002; Frey, Buchanan, & Sandt, 2005; Stanish & Draheim, 2005), religious participation (Gaventa, 1994; McNair, 2005; McNair & Swartz, 1997; Minton & Dodder, 2003), and postsecondary education (Grigal, Neubert, & Moon, 2002; Hamill, 2003) has identified a need for more nonwork supports to fill gaps in the support systems of people with developmental disabilities and enable them to lead fuller lives.
Emergence of CBNW as a Considerable Part of the Day Supports System
The Institute for Community Inclusion (ICI) at the University of Massachusetts Boston has been collecting states' data on day and employment services for people with developmental disabilities since 1988 through the National Survey of Day and Employment Programs for People With Developmental Disabilities. The first several iterations of the survey collected data on distribution of services across three basic categories:
Integrated employment (individuals working in community-based jobs),
Facility-based work (sheltered workshops or work activity programs), and
Facility-based nonwork (day habilitation or day activity programs).
Starting in 1996, ICI added a fourth category of services—CBNW—to the survey. The fourth category was added because respondents to previous years' surveys commented that CBNW was a type of support that they provided that did not fit into the other three categories. A concurrent survey of local community rehabilitation providers (CRPs) also identified CBNW as an emerging service category, with some CRPs reporting that CBNW was provided despite it not being included among the service categories in the survey (McGaughey, Kiernan, McNally, Gilmore, & Keith, 1996).
CBNW was defined in the 1996 survey as
Non job-related supports focusing on community involvement such as access to public facilities (recreational/educational) or public transportation. For example, Community Integration Services. (p. 2)
In 2001, the definition was modified to
Non job-related supports focusing on community involvement such as access to public resources (recreational/educational) or volunteer activities; typically identified as Community Integration or Community Participation Services. Community-based non-work includes all services that are located in the community (rather than facility-based) and do not involve paid employment of the participant. (p. 2)
The 1996 survey findings confirmed that CBNW was a considerable component of the day services and supports mix, with 16% of day services recipients in the 39 responding states participating in CBNW (Butterworth, Gilmore, Kiernan, & Schalock, 1999). To learn more about this service category, ICI included an additional set of questions about CBNW programs and policies in the 2001 survey. This article presents findings from the 2001 survey, which showed that, although CBNW is a significant and growing part of the service mix, state definitions and requirements for CBNW tend to be broad and unfocused.
The National Survey of Day and Employment Programs for People With Developmental Disabilities has been conducted every 2–3 years since 1988. To date, data have been collected for 7 fiscal years: 1988 (Kiernan, McGaughey, Schalock, & Rowland, 1988), 1990 (McGaughey, Kiernan, Lynch, Schalock, & Morganstern, 1991), 1993 (McGaughey, Kiernan, McNally, & Gilmore, 1993), 1996 (Ma & Gilmore, 1997), 1999 (Dreilinger, Gilmore, & Butterworth, 2001), 2001 (Sulewski, Butterworth, & Gilmore, 2006), and, most recently, 2004 (Winsor & Butterworth, 2007).
The survey has changed over time in response to feedback from respondents and based on individual question responses (i.e., questions that yielded very few responses were eliminated in future surveys). The core data items of the survey, however, which address the distribution of services, numbers served, and funding sources, have remained similar over the years. In addition to these core items, the 2001 survey included a two-page module on CBNW supports. The CBNW module was developed by ICI staff, who were familiar with the previous survey and with the relevant issues, and was intended to gain an initial understanding of state agencies' goals, requirements, and administration of CBNW support funding, as well as the specific activities, supports, and individuals involved. The module included questions about the following:
The agency's definition of CBNW, including specific requirements and specific activities supported as part of CBNW;
How CBNW fit into the agency's funding structure;
What population groups the agency's CBNW services targeted; and
What the agency's goals for CBNW were.
Both the questions and the response options for the module were developed through extensive discussion among ICI project staff and were based on our collective knowledge of the relevant policy and service issues.
As in previous years, the survey was sent to the director of the state Mental Retardation/ Developmental Disabilities (MR/DD) agency in each of the 50 states plus the District of Columbia. The survey was also sent to the individual who filled out the survey in the previous year. The Fiscal Year (FY) 2001 survey was the first online iteration of data collection. An electronic version of the survey was posted on a Website, and each state agency contact was e-mailed the survey instructions and a password for his or her state. The initial contact was asked to either personally complete the survey or pass the survey on to the person in the agency who would best be able to address the survey topic. Project staff followed up by telephone to encourage participation of nonresponding agencies and/or clarify data. Paper or e-mail versions of the survey were also provided if requested by the respondent. Forty-three state agencies responded, for a total response rate of 84%. Because some respondents skipped certain questions, and because several respondents did not fill out the CBNW module, the number of respondents for each question on CBNW ranged between 30 and 40.
The core data addressing the elements of CBNW is from the 2001 survey described above, but because this is a longitudinal study, we also present data on numbers from our 2004 survey.
Participation in CBNW
From its first appearance in the survey (1996), a considerable percentage (13%) of day services recipients were in CBNW; as of 2004, responding states indicated that 22% of individuals receiving day and employment supports were in CBNW (ICI, 2007). The number of individuals reported in CBNW nationally also grew considerably, from about 44,000 in FY 1996 to over 114,000 in FY 2004. This growth in number of individuals participating in CBNW reflects an overall growth in the total number receiving day and employment supports, from just under 400,000 in 1996 to over 520,00 in 2004. Although the numbers served in facility-based services (work and nonwork) were fairly steady between 1996 and 2004, the numbers receiving community-based supports (integrated employment and CBNW) grew in both absolute terms and the percentage of individuals served (see Figure 1).
Characteristics of CBNW Services
Several questions in the CBNW module of the 2001 survey addressed the characteristics of CBNW services from the state agency perspective, including what funding categories CBNW was included in, what guidelines the agency had in place for CBNW, and what activities were considered part of CBNW.
Respondents were asked to choose (from a given list) all the ways CBNW fit into the agency's funding structure. The most common response (24 of 40 respondents) was “part of a general day services funding category,” indicating that for a majority of states CBNW is not a distinct entity financially (Figure 2). The next most frequent response (n = 15), however, was “a distinct funding category,” so a considerable number of states did consider CBNW a separate service type.
States also had few specific guidelines for CBNW. When asked what requirements (minimum staff-to-individual ratio, maximum group size, minimum number of hours in the community, or other) were in place for CBNW, over one third of the respondents to this question (12 of 32) did not identify any specific requirements. Ten respondents said their agency had a minimum staff-to-individual ratio (specified ratios ranged from 1:2 to 1:8). The same number said that the agency specified a maximum group size (with specified group sizes between 2 and 6). Four states specified a minimum number of hours in the community and six had other requirements, such as a maximum amount of time a person could be working and still considered in CBNW, provider certification requirements, service planning requirements, and, in one case, an encouragement of use of settings where 50% or more of people did not have a disability. Although some states had strict requirements, overall, the low use of specific requirements reflects a general flexibility around CBNW and a lack of clear consensus regarding what factors make day supports “community based.”
Most states also included a wide variety of activities in the CBNW category. When asked what activities would be considered part of CBNW, all but 2 respondents (31 of 33) checked five or more of the nine given responses; in fact, 14 states checked all nine options (see Table 1). The variety of activities checked by each state indicates that individual state agencies supported a wide range of activities under this service category. The only activities included in CBNW by fewer than 29 of the 33 responding states were community education programs (25 states), recreation programs for people with disabilities (24), and unstructured recreation time (21). The wide range of activities was also apparent in the written definitions of CBNW provided by respondents. Definitions either did not specify activities at all or included broad categories of activities such as “typical activities of community life,” “socialization activities,” and “recreation.”
Included in the range of activities were both group activities and disability-specific activities. Community exploration in a group was part of CBNW in 29 states, as many as included one-on-one community exploration. In addition, educational and recreation programs for individuals with disabilities (activities such as therapeutic horseback riding) were considered part of CBNW by the majority of respondents. In fact, more agencies included participation in disability-specific educational programs (29 of 33 respondents) than participation in community educational programs (25 of 33 respondents). Twenty-four states also included participation in recreation programs for people with disabilities, whereas 29 agencies included community recreation programs.
Populations Served in CBNW
Most respondents indicated that CBNW was targeted at multiple population groups. One third of respondents (11 of 33) said that CBNW was targeted at all six population categories presented in the survey: transitional youth, people who were retired, people who were working, people in facility-based programs, people seeking employment, and people for whom work was not a goal. Each population group was chosen by at least two thirds of respondents, with the exception of transitional youth, who were targeted by only 14 states.
The population group patterns provide an indicator of the relationship between CBNW and integrated employment, the other major category of non-facility–based day supports. The population groups listed above could be grouped into four categories according to their relationship to employment:
Pre-employment (transitional youth or individuals seeking employment),
Postemployment (retired individuals),
“During” employment (supplemental service for individuals who were working), and
“Instead of” employment (individuals who spent part of the day in facility-based programs or for whom employment was not a goal).
Grouping responses in this manner makes it apparent that CBNW was most frequently described as a substitute for employment rather than something to be provided in addition to employment supports (see Figure 3). The other three relationships were also common, however, indicating that CBNW did not have one clear role relative to employment.
We also examined state-by-state responses for another view of the relationship between CBNW and employment. Table 2 presents data on CBNW and integrated employment for each state in 2004. These data indicated substantial state-to-state variability in outcomes, with no clear relationship across states between percentage in CBNW and the percentage in integrated employment. Of the 38 states that provided data on both CBNW and integrated employment, 11 had a high percentage (higher than the median of reporting states) in CBNW and a high percentage in integrated employment, 9 had a high percentage in integrated employment and a low percentage in CBNW, 8 had a high percentage in CBNW and a low percentage in integrated employment, and 10 had low percentages in both.
Goals of CBNW
When respondents were asked to rate the goals of CBNW for their agency, no particular goal prevailed. Respondents were asked to rate several goals on a 1–5 scale (from not at all important (1) to very important (5); see Figure 4), and there was little variation in average ratings across goals. All goals had average ratings between 3.4 and 4.0. The highest rated goals, on average, were providing services to people who have difficulty maintaining employment (3.87) and providing life skills or independent living training (3.94). Skill development and training were also frequently mentioned in states' written definitions of CBNW.
CBNW is an increasingly substantive part of the day services mix for adults with developmental disabilities. Between 1996 and 2004, both the number and percentage of individuals participating in CBNW grew nationally.
CBNW can be a useful way to supplement employment supports for people who work part time, enabling them to spend more of their nonwork hours engaging in community-based activities rather than being at home or at a facility. CBNW can also be used to support retirement activities for people who are over 65 years old and no longer want to work, to enable transition-age youth to gain work skills through higher education or volunteer work, and to provide meaningful day activities for people who are between jobs or have not yet found a job.
The findings from this survey suggest, however, that CBNW may not be fulfilling its promise. Several concerns arise from the data.
First, CBNW was not a clearly defined or delineated service type. In terms of funding, CBNW was often part of a broader service type (e.g., general day services) rather than a separate category. There were usually few specific requirements, and CBNW generally encompassed a variety of activities, population groups, and goals. The lack of clear goals and standards, although providing flexibility, brings into question the ability of states to effectively manage program quality.
Second, the expected role of CBNW was also unclear, particularly regarding its relationship to employment. The growth of CBNW services may represent a shift of emphasis from employment to a broader and less well-defined goal of “community inclusion.” Such a shift was also suggested by the finding that state agencies often considered CBNW an alternative—rather than a supplement—to employment. Although additional research is indicated, states need to be careful that CBNW services do not replace continued growth in access to high-quality employment opportunities.
Third, the inclusion of group activities (e.g., community exploration in a group) and disability-specific activities (e.g., therapeutic horseback riding) in CBNW may have limited its potential for community integration. In these activities and programs, the primary social interaction was likely to be with other individuals with disabilities and with staff. Although such activities were physically located in the community, they did not necessarily contribute to community membership because opportunities to meet and interact with community members not involved in disability services were limited. The limitations of this type of CBNW activities have implications for social networks of individuals with disabilities. Conclusions from this study mirror that of other work that has focused on social capital. In a qualitative study with individuals with intellectual disabilities, Cohen (2005) found that community participation was typically occurring within the context of a disability-specific group, such as Special Olympics or a Best Buddies program. These activities rarely yielded significant community connections with individuals without disabilities.
Limitations of This Study
This study has several limitations. First, the core data on CBNW presented here were from a 2001 survey. Although the 2001 data are 6 years old, they remain useful because there are no other data existing that provide the level of specificity on this emergent service category. Also, there have been no significant policy changes or other events that would lead us to believe that states' CBNW policies and practices have changed considerably since 2001.
Second, the findings of the survey are accurate only to the extent that each state's respondent provided accurate data. Because there are no national standards for collection of intellectual and developmental disability agency data, both the approach to data collection and the quality of the data varied from state to state. In addition, respondents left some questions blank.
Last, although these survey findings provide some insights into how CBNW was defined and managed by state intellectual and developmental disability agencies, the actual implementation of these services took place largely at the local service provider level. It is impossible to tell from this survey whether CBNW as currently implemented contributed to the broader goals of disability services and supports—goals such as choice, community integration, individualized services, and independence. A follow-up study to this survey better addressed these questions using a case study approach (Sulewski, 2006).
Overall, these findings indicate a need for more clearly articulated expectations for CBNW. If CBNW is to achieve its goals, those goals must be clearly set forth and adhered to both by the state agencies and service providers. Clear goals, definitions, and roles for CBNW can lead to higher quality supports.
Definitions and expectations for CBNW should emphasize community integration
Although the goal of CBNW as expressed by respondents varied, other research on CBNW (Sulewski, 2006) has identified the concept of integration as critical. Previous case studies of CBNW (Hall & Walker, 1997; Walker, 1998, 2000) have identified helping people make social connections and build relationships as both important roles and challenges of CBNW. For CBNW to accomplish integration, it needs to be expected not just to physically locate supports in the community but to move people toward community membership and provide opportunities for formation of relationships with other community members.
Certainly the lack of relationships is not an issue unique to CBNW; the literature on social networks has indicated that, even when they do have a presence in the community, people with developmental disabilities do not have as many social connections as people without disabilities (Gardner & Carran, 2005; Rosen & Burchard, 1990). Moreover, there is evidence that interactions between people with and without disabilities are particularly important. Amado (1993) observed that, “Many individuals who receive services are explicit about their preference for people other than staff and other people with disabilities” (p. 302). Putnam and Feldstein (2003) noted that, although “bonding” relationships (with people like oneself) are the easiest to form, “bridging” relationships are important in that they allow people access to a broader network of people and resources.
To promote relationships, activities need to involve long periods of contact, redundancy of contact, and a shared interest or purpose (Abery, 2004; Amado, 1993; Putnam & Feldstein, 2003; Wetherow & Wetherow, 2004). Creating expectations that are based on such criteria as repeated contact with community members, shared interests, and cooperative activities could lead to increased success in this area. For example, measures of quality could include the amount of time spent in the same community setting, frequency of contact with a particular group, and the extent to which an individual is engaging in activities with a shared purpose or interest, such as volunteer groups or hobby clubs, rather than in less interactive activities such as going shopping or out to eat. Cohen (2005) suggested that quality indicators for CBNW could come from the social capital literature, which includes measures for individuals' social networks and the benefits and value derived from the networks themselves.
CBNW should be a supplement to, not a replacement for, employment
An important part of setting expectations and goals for CBNW is defining its relationship to other supports and, in particular, its relationship to integrated employment. Employment enables people with disabilities to take on a typical adult role, be more active participants in the community, and become more self-sufficient financially. Moreover, if people with disabilities are to have equal treatment with others in society, they should have equal obligations as well, to at least some extent, which include an obligation to contribute to society through working.
Consequently, it is important that CBNW be considered a supplement to employment, with employment as the first priority. Even in an employment-focused system, there are a number of ways CBNW can enhance those parts of people's lives that employment does not fill, both on a day-to-day basis and in a longer term sense. For example, particularly for people working part time, CBNW can supplement employment with other daytime activities in the community, including volunteer work, recreational and social pursuits, and tending to daily life activities such as errands and appointments. Because most people in community-supported employment work limited hours (Mank, Cioffi, & Yovanoff, 2003), finding other meaningful day activities can fill an important gap.
CBNW can also be provided at times in their lives when people may not be working. For people transitioning from school to work, CBNW can be a tool for obtaining more education or training toward career goals. For people who are unemployed, CBNW supports could help them stay active in the community (but should also be accompanied by active job-search activities). For people who are aging, CBNW can serve as a retirement resource.
Although employment is a central part of most people's lives, employment alone does not make a life, so CBNW can have an important supplemental role in enabling people with disabilities to have fuller, richer lives. It is important, however, to be constantly vigilant to ensure that CBNW is not used simply to substitute for employment rather than to supplement it.
Group and disability-specific activities should be examined carefully
These study findings indicate that a number of states considered group-based supports and/or disability-specific activities appropriate for CBNW. Providing supports in groups can be a detriment to individualization, choice, and integration for participants. Choice is limited when several people's choices have to be considered at once. When people are in groups, they are less likely to interact with people outside the group and people outside the group are less likely to approach them, so opportunities for social integration and relationship building are reduced. Opportunities for participants to learn, grow, and gain independence are often lost in group supports because more time is spent simply ensuring that everyone is cared for and less one-on-one attention is paid to each participant.
There are, however, genuine friendships and relationships among people with disabilities that this article has not addressed thus far. Other research (Cohen, 2005) has shown the strong ties that may exist among individuals with disabilities who attend the same sheltered workshop, day program, or receive CBNW supports together. These relationships should not be discounted or discouraged. To insist that people in CBNW should be interacting only with people without disabilities would not only be disrespectful of their wishes but also discriminatory, implying that friendships with people with developmental disabilities are less valuable than those with people without disabilities. Consequently, there is an important place for supporting social interaction of groups of people with disabilities.
It is important, therefore, not to discontinue group activities altogether but to pay careful attention to each case of grouping to ensure that it is the preference of the people with disabilities and not grouping for the convenience of agency support staff or for logistical reasons. In addition, support for participation in group activities with others with disabilities should complement efforts to promote more relationships with community members without disabilities.
Authors: Jennifer Sullivan Sulewski, PhD (firstname.lastname@example.org), Research Associate, Institute for Community Inclusion, University of Massachusetts Boston, 100 Morrissey Blvd., Boston, MA 02125. John Butterworth, PhD, Research Coordinator, Institute for Community Inclusion, University of Massachusetts Boston, 100 Morrissey Blvd., Boston, MA 02125. Dana Scott Gilmore, MA, Market Research Manager, McGraw-Hill Construction, 34 Crosby Dr., Suite 201, Bedford, MA 01730