In Fiscal Year (FY) 2004, an estimated 513,746 individuals received day or employment supports from state intellectual disability/developmental disability (ID/DD) program agencies. This number grew from 412,602 in FY 1996. Despite this growth, the number of individuals supported in integrated employment grew only from an estimated 91,787 in FY 1996 to 116,917 in FY 2004. State investment in supports continues to emphasize growth in facility-based and nonwork services.
The data reported here are the core elements of Institute on Community Inclusion's National Survey of Day and Employment Services. Data are reported by state ID/DD program agencies on services funded by or monitored by those agencies. This article focuses on participation in integrated employment, community-based nonwork services, and facility-based services. Integrated employment includes both individual employment and group-supported employment, and community-based, nonwork is defined as services that are located in the community and not a facility and do not involve paid employment, including general community activities, volunteering, or recreation and leisure participation. Last, facility-based settings include both facility-based work services (sheltered employment) and facility-based nonwork services such as day habilitation or day activity. Data are included from the 50 states and the District of Columbia. The number of reporting states by variable varied from 37 to 45 over the time studied, with data projection used to estimate national totals for service participation. For some states, data reported by service setting represent duplicated counts because individuals were served in multiple settings. For these states, the percentage served across settings may add to more than 100%. In addition, other services, including services for individuals who are elderly, are not reported.
In FY 2004, an estimated 22% of individuals receiving day supports from state ID/DD agencies participated in integrated employment, whereas 58% of individuals were supported in facility-based settings. Although the data demonstrate a decline in the percentage of people served in facility-based settings (from 72% in 1996 to 56% in 2004), they also indicate a slight decrease in the percentage served in integrated employment following the peak of 24% in 2001. The data also suggest that the growth seen in supported employment between the mid-1980s and mid-1990s has not continued.
Facility-based settings continue to make up the majority of expenditures for day and employment services. Nationally, facility-based work and facility-based nonwork services received 57% of the funding for day and employment services, whereas integrated employment received 12% of the funding in FY 2004. These data have changed only slightly since 1996 when 11% of funding was allocated to integrated employment and 66% toward facility-based work and nonwork services.
Nationally, participation in community-based nonwork services has grown steadily from 12.5% in FY 1996 to 21.5% in FY 2004 for states that report it as a service. First added to the survey as a service option in FY 1996 in response to state feedback, the number of states reporting participation in community-based nonwork has grown from 18 in FY 1996 to 24 in FY 2004 (see Table 1). Community-based nonwork services accounted for 31% of state ID/DD agency expenditures for FY 2004 for states that reported the service. Growth in supports for community-based nonwork may reflect a growing emphasis on community presence, although the contribution of this service to community membership remains unclear. There are limited data on the structure, activities, and outcomes of this service, and states have not established clear service expectations or quality assurance strategies (Sullivan, Boeltzig, Metzel, Butterworth, & Gilmore, 2004).
The substantial variability in participation in both integrated employment and community-based nonwork across the states suggests that some states have been effective in developing policy and strategy that expand community membership (see Table 1). Several states reported serving less than 15% of individuals in facility-based settings, and in FY 2004 Vermont reported that the state did not serve any individuals in facility-based settings. Nine states reported serving over 40% of individuals in integrated employment. Data from these states suggest that individual states have the ability to institute policies and practices that support improved employment outcomes. Factors that have been identified as influencing state integrated employment outcomes include clear system goals, policies and funding practices that emphasize employment, communication of values through employment-outcome data collection, and innovation diffusion through training within the context of a clear values base and strong leadership (Hall, Butterworth, Winsor, Gilmore, & Metzel, 2007).
(Sources: 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, 182–198; and Sullivan, J., Boeltzig, H., Metzel, D., Butterworth, J., & Gilmore, D. S. (2004). National survey of community rehabilitation providers, FY2002-2003 Report 2: Non-work services (Research to Practice Brief, Vol. 10, No. 3). Boston: University of Massachusetts, Institute for Community Inclusion.)
This research was supported in part by Cooperative Agreement 90ND0216 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.
We thank Frank Smith and Alberto Migliore for their generous technical support on this manuscript.