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The National Survey of Community Rehabilitation Providers, FY2002-2003, Report 2: Non-Work Services

Research to Practice 36

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Originally published: 9/2004

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Introduction

The proportion of individuals participating in non-work programs has grown noticeably over the past decade. Despite the push toward integrated employment for people with developmental disabilities in many states, non-work day programs continue to be a substantial component of the service mix. Butterworth et al. (1999:23) suggest that "services are becoming increasingly individualized and differentiated... traditional service categories may not be sufficient to capture the full range of how individuals with developmental disabilities are spending their day."

This brief presents findings that describe the role of non-work programs in the service mix offered by community rehabilitation providers (CRPs), individuals' participation in non-work programs, and the activities and goals of non-work services. This is the second in a series of Research to Practice briefs on the FY2002-2003 National Survey of Community Rehabilitation Providers, which was funded by the Administration on Developmental Disabilities.

Main Survey Findings

Background: National Trends from the State MR/DD Surveys

For background and comparison purposes, we include some related findings from ICI's 2001 National Survey of Day and Employment Programs for People with Developmental Disabilities (2001 state MR/DD survey), a survey of state mental retardation or developmental disability agencies. Since 1988, ICI has been collecting data on day services from state MR/DD agencies through this survey. Findings indicated that the percentage of people served by MR/DD agencies participating in non-work day services grew from 39% (in facility-based non-work) in 1988 to 47% (in facility- and community-based non-work) in 2001.

Community-based non-work (CBNW) was a new category of services added to the MR/DD survey in 1996. Feedback from state agencies indicated that CBNW was establishing a definite presence in their service mix yet was not adequately reflected in the original three categories included in the survey (facility-based non-work, facility-based work, and integrated employment). Typically referred to as "community participation" or "community integration services," CBNW encompasses any non-work activity that takes place in the community rather than in a program setting for people with disabilities.

In 1996, state MR/DD agencies reported that 16% of the people they served were in CBNW services. By 2001, the percentage in CBNW had grown to 18%. In the meantime, facility-based non-work decreased from 31% to 28% of individuals served, but the number of people served in facility-based non-work actually rose slightly in that time period.

In total, from 1988 to 2001 the number of people served in non-work services (facility-based and community-based) increased more than 125% from 98,223 to 222,443. This increase represented both the overall growth in numbers of people served in work and non-work services and the emergence of CBNW.

Findings

The FY2002-2003 National Survey of Community Rehabilitation Providers included several questions related to non-work services (see the sidebar for more details on this survey). It is important to note that while the findings from the 2001 state MR/DD survey described services specifically for people with MR/DD, the following CRP findings refer to services for people with a variety of disabilities.

Community Rehabilitation Providers

The majority of CRPs provided both employment and non-work services. Sixty-nine percent (174) of CRP survey respondents indicated that they offered both employment and non-work services (see Figure 1). Only 7% (18) provided non-work services only. This finding suggests that the inclusion of non-work programs among a variety of options did not necessarily replace employment.

Figure 1.

Figure 1. Service mix offered by CRPs (N=254)
Sixty-nine percent of CRP survey respondents indicated that they
offered both employment and non-work services. Seven percent provided
non-work services only compared to twenty-four percent that offered
work services only.

Eighty-five of the 162 facility-based non-work providers reported that the number of people served in facility-based non-work had increased during the past three years. Likewise, 75 of 116 CBNW providers reported that the number of people served in CBNW had increased. These findings were consistent with the national growth in non-work found in the 2001 state MR/DD survey.

State Variation in Service Mix

The proportion of individuals served in non-work day settings varied greatly by state. In those states providing non-work services, the proportion of individuals receiving MR/DD services in non-work settings ranged from 11% to 95%. Thirteen states reported more than half of individuals receiving MR/DD services participating in non-work. The proportion of individuals in community-based versus facility-based non-work also varied greatly.

People Served

Over one-third of individuals (35%) served annually by survey respondents were in non-work programs only, although the majority (60%) only received work services (see Figure 2). Most individuals were in either work or non-work but not both. Of the 86,170 individuals served annually, only 5% received both work and non-work services from the CRP.

Figure 2.

Figure 2. Individuals served annually by CRPs (N=254)*
Of the 86,170 individuals served annually, only five percent received
both work and non-work services from the CRPs. Thirty-five percent
received non-work services only compared to sixty percent who received
work services only.

The majority of individuals in non-work services were in facility-based settings (see Table 1). CRPs were asked to report how many people were served in each type of non-work program on a selected date. It is important to note that individuals who were in more than one service could be counted in more than one service category.

Of individuals in non-work programs, the largest number were reported to be in facility-based non-work. Less than half as many people were reported in CBNW. Facility-based non-work continued to be the most prevalent type of non-work setting, despite the expansion of CBNW services.

The majority of individuals in non-work services were identified as having a developmental disability (see Table 1). Of the 18,880 individuals supported by CRPs in non-work on a selected date, 12,724 or 67% were people with developmental disabilities.

We noted an interesting finding in the distribution of people with developmental disabilities among the non-work services (excluding "Other"). In contrast to the approximately 75% of people with developmental disabilities in each of the other non-work services, slightly more than half of the individuals in CBNW for the elderly had developmental disabilities.

Table 1.

Individuals Served in Non-Work Services on a Selected Date

Type of non-work service Total
N= 18,880
Individuals with developmental disabilities
N= 12,724
Facility-Based Non-Work 10092 7458
Facility-Based Non-Work for Elderly (aged 55 and above) 1082 766
Community-Based Non-Work 4053 3501
Community-Based Non-Work for Elderly (aged 55 and above) 598 320
Other 3055* 679*

* These totals were based on very small numbers of CRPs (ten and three respectively) that reported data in these categories.

CRPs That Provided Non-Work Services

More than half (96 or 51%) of the 191 CRPs that offered non-work provided both facility-based and community-based non-work (see Figure 3). Sixty-seven CRPs (or 36%) used only facility-based non-work settings, while 24 CRPs (or 13%) operated only CBNW supports. These figures included programs for both the general population and the elderly.

One hundred twenty CRPs operated programs for the general population (rather than specifically for the elderly). Slightly more than half (64) of the CRPs provided both programs for the general population and programs specifically for the elderly. Only three agencies exclusively operated non-work programs for the elderly.

Figure 3.

Figure 3. Service mix offered by non-work providers (N=191)
Fifty-one percent of CRP survey respondents that offered non-work
provided both facility-based and community-based non-work. Thirteen
percent provided community-based non-work only compared to thirty-six
percent that provided facility-based non-work only.

Community-Based Non-Work Activities

More CRPs reported that they supported group and disability-specific CBNW activities than other types of non-work activities (see Table 2). CRPs indicated that they provided a variety of services as part of CBNW. When asked to indicate which of a list of nine activities were included in CBNW, the majority of CRPs reported providing at least eight of the nine, which confirmed the findings in the 2001 state MR/DD survey (referenced in the Background section).

Two patterns in the activities offered were troubling. First, more CRPs provided community-based recreation and educational activities specifically for people with disabilities than supported generic recreation and educational activities. Second, a high percentage of CRPs offered community exploration in a group as part of their CBNW programs. Both group activities and activities specifically for people with disabilities have more potential to isolate people with disabilities than supporting individuals to participate in generic community activities.

Transportation to community activities was provided by a majority of CRPs as part of CBNW. While this item was included in the "activities" question, in our analysis it was considered a "service" rather than an activity since it lacked the common element of active participation assumed in the other activities.

Table 2.

Community-Based Non-Work Activities and Rate/Number of CRPs Providing These Activities

Activity % CRPs N=87
Transportation to community activities 92% 80
Community exploration in a group 92% 80
Volunteer opportunities 90% 78
Guided community exploration for individuals 77% 67
Participation in recreation programs for individuals with disabilities 76% 66
Participation in community recreation programs 68% 59
Unstructured recreation lines 68% 59
Participation in community educational programs for individuals with disabilities 68% 59
Participation in community educational programs 56% 49
Other activities 67% 58

Community-Based Non-Work Goals

Respondents rated CBNW program goals on a one-to-five scale ("not at all important" to "very important"). Ratings ranged from 2.55 to 4.55 (see Table 3). Consistent with our findings from the 2001 state MR/DD survey, the goals with the highest average ratings were providing life skills for independent living, providing self-directed services, and providing day services to individuals who had difficulty maintaining integrated employment. Although "Other" had an average rating of 4.55, only 11 CRPs reported this category.

Table 3.

Average Rating of Importance of Community-Based Non-Work Program Goals (CRP: N=87)

Program goal Rating
To provide participants with life skills for independent living 4.22
To provide self-directed services (N=86) 3.98
To provide day services to individuals who have difficulty maintaining integrated employment 3.91
To prepare participants for integrated employment 3.55
To supplement employment services 3.21
To provide interim services to individuals looking for work 2.99
To provide retirement services 2.55
Other goals (N-11) 4.55

Discussion

The analysis of the FY2002-2003 National Survey of Community Rehabilitation Providers confirms non-work as a significant component in the service mix.

Findings such as these raise questions about the service system's commitment to both the integration and employment of people with developmental disabilities. The continued and conspicuous bias toward facility-based non-work calls for an examination into other factors that support non-work, especially facility-based non-work for people with developmental disabilities.

CBNW programs demonstrated a slight but noticeable bias toward group and disability-specific activities, reflecting less integration in "community-based" settings. These findings suggest that how these activities are provided, group or individual, and generic or disability-specific should be further explored for their impact on integration. Details about volunteer activities, unstructured recreation times, and other activities are also needed for a more comprehensive understanding of CBNW activities. Information on what activity choices are offered by the CRPs, how they match the preferences and needs of the people with developmental disabilities, and how these activities are supported would help clarify the value of non-work services offered by CRPs.

"Other" program goals also warrant further investigation, especially in light of the social skills and relationship-building activities that some CRPs mentioned. It was encouraging that provision of skills for independent living and self-directed services received high average ratings in importance. Continued research into CBNW goals will help to assess the purpose of CBNW in the service mix.

Some of the "other goals" that the 11 CRPs identified included community integration and helping build relationships between people with and without disabilities; helping people to build self-confidence, skills, and social supports; and providing recreation and leisure opportunities.

Conclusion

Given that non-work continues to be a substantial and growing part of the CRP service mix, it is important to understand whether non-work programs advance goals such as independence, integration, and self-determination. Patterns such as the extensive use of facility-based non-work, group activities, and activities specifically for individuals with disabilities raise concerns about the effectiveness of non-work programs in reaching such goals. The expansion of CBNW also raises a concern that the investment of CRP resources in this emerging model may have a negative impact on the investment of program development resources in expanding opportunities for integrated employment. An in-depth exploration of the nature and roles of non-work will help us to understand if non-work, as it is currently provided, has meaning for people with developmental disabilities.

Data Collection and Methods

Since the late 1980s, ICI has conducted a series of national studies, funded by the Administration on Developmental Disabilities, to identify trends in day services for adults with developmental disabilities. The data collection efforts in these studies have included national surveys of state mental retardation/developmental disabilities agencies and CRPs.

The CRP survey was a national examination of randomly chosen CRPs that provided employment and/or non-work services to individuals with disabilities in FY 2002-2003. A mailing list representing the sample of providers was developed at the Research and Training Center on Community Rehabilitation Programs at the University of Wisconsin-Stout with input from project staff, and was cross-referenced with lists from other sources including Goodwill, Inc., The Arc, United Cerebral Palsy, and CARF.

In the sample of 507 providers, there were 254 valid responses, resulting in a response rate of 50%. Not all organizations provided all services, and individuals who participated in more than one service could be counted in more than one service category. Also it should be noted that 60 of the 254 respondents completed a shorter version of the survey. This version was offered in our third round of follow-up telephone calls to increase the response rate. Both versions can be accessed online at www.communityinclusion.org. Finally, it is important to mention that in this survey, respondents were asked to report both the annual and daily total numbers of people served in the different service settings.

Survey Definitions

Type of Service/Setting Work Non-Work
Community Integrated Employment:
A job in the community where most people to not have disabilities. Includes:
  • Competitive employment
  • Individual supported employment
  • Entrepreneurism (including self-employment)
  • Transitional Employment
  • Group supported employment including enclaves and mobile crews that meet the Rehabilitation Act definition
Community-based non-work:
A program where individuals engage in recreational, skill training, or volunteer activities in settings where most people do not have disabilities (e.g., community integration, community participation services).
Facility Sheltered work:
Employment in a facility where most people have disabilities, with continuous job-related supports and supervision. Includes:
  • Sheltered employment
  • Work center based employment
Sheltered non-work: A program whose primary focus is skill training, activities of daily living, recreation, and/or professional therapies (e.g., O.T., P.T.), in a facility where most people have disabilities (e.g., day activity, day habilitation).

What Services Do Individuals Receive from CRPs?*

All individuals served
N= 54,833*
Individuals with developmental disabilities
N= 38,298^^
Integrated Employment 32% 26%
Facility-Based Work 34% 41%
Community-Based Non-Work 8% 10%
Facility-Based Non-Work 20% 21%

* Individuals could be counted in more than one service category.
** Six percent of the total of all individuals served by CRPs were reported in the "other" non-work service category.
^^ Two percent of the total of individuals with developmental disabilities served by CRPs were reported in the "other" non-work service category.

References

Butterworth, J., Gilmore, D., Kiernan, W.E., and Schalock, R. (1999). State trends in employment services for people with developmental disabilities: Multiyear comparisons based on state MR/DD agency and Vocational Rehabilitation (RSA) data. Boston: Institute for Community Inclusion/UAP, Children's Hospital.

The authors would like to thank Ann Downing for her invaluable assistance with this project. Fred Menz and staff of the Research and Training Center on Community Rehabilitation Programs at the University of Wisconsin-Stout provided assistance in developing the sample used in this project.

For more information, contact:
Deborah Metzel, Ph.D.
Institute for Community Inclusion
UMass Boston
100 Morrissey Boulevard
Boston, Massachusetts 02125
617.287.4318 (v); 617.287.4350 (TTY)
deborah.metzel@umb.edu
www.communityinclusion.org

This publication will be made available in alternate formats upon request.

This document was supported in part by cooperative agreement #90ND0126 from the Administration on Developmental Disabilities, Administration for Children and Families, U.S. Department of Health and Human Services. Points of view or opinions do not necessarily represent official Administration on Developmental Disabilities policy.