In response to our article, “Achieving Community Membership Through Community Rehabilitation Provider Services” (Metzel, Boeltzig, Butterworth, Sulewski, & Gilmore, 2007), Weikle (2008, this issue) provides an opportunity to extend the discussion of opportunities for adults with developmental disabilities and, in particular, the roles of choice and public policy in promoting integrated employment outcomes. Our article raised questions about state agency investment in services and the public policy direction of state systems and community rehabilitation providers (CRPs). Based on a survey of a national random sample of CRPs, we observed that there has been little change in the rate of participation in integrated employment for individuals with developmental and intellectual disabilities, with participation hovering around 26% of individuals who are supported by CRPs in day and employment services. Weikle raises concerns about our interpretation of these findings. In particular, he is concerned with our suggestion that public funding should be directed away from facility-based day programs toward programs that assist people with disabilities in gaining integrated employment. Weikle argues that this would limit the very same choice that advocates of integrated employment claim for people with disabilities. As a descriptive study, the presentation of the data provides a simple summary of the state of CRP services. The limited change in the distribution of services over the past decade, however, raises questions about the effectiveness of the service system in pursuing the vision of community membership described by Bradley (1994) and others.
This research can only be understood in the context of a larger body of work. One key element is the demonstrated success of some CRPs and states in supporting stronger employment outcomes. Case study and qualitative research suggests that individual CRPs have been successful in shifting service emphasis to integrated employment (Butterworth, Fesko, & Ma, 2000; Murphy & Rogan, 1995; Olney, Fratangelo, & Lehr, 2000). These CRPs have reported that few individuals made the decision to transfer to other service providers, suggesting that when provided with an effective and systematic opportunity for integrated employment, individuals make that choice at a much higher level than our research indicates is the norm. The experiences of these providers suggest that we have not been effective on a national level at presenting and supporting alternatives so that individuals can make a truly informed choice. A recent study by Migliore, Mank, Grossi, and Rogan (2007) supports this notion. In a survey of 210 adults with intellectual disabilities who worked in a sheltered workshop, 82% of consumers believed they could work outside the workshop, with support if needed, as did 75% of families and 78% of workshop staff. Only 27% of family members indicated they opposed integrated employment, and only 29% of staff in these workshops thought that the consumers they supervised were not interested in outside employment. It is significant that the findings indicated that professionals in disability services played a minimal role in encouraging pursuit of integrated employment. Only 22% of families reported that workshop staff encouraged them to pursue employment outside of the workshop (Migliore, Grossi, Mank, & Rogan, 2007).
Similarly, several state developmental disability agencies have achieved levels of participation in integrated employment in the range of 50% or higher of all individuals receiving day and employment supports. The success of states like Washington, Oklahoma, New Hampshire, and Vermont suggests that there is substantial untapped potential for supporting individuals in integrated employment (Hall, Butterworth, Winsor, Gilmore, & Metzel, 2007). In fact, Washington's Working Age Adult Policy “establishes employment supports as the primary use of employment/day program funds for working age adults” (Washington State Department of Social and Health Services, 2004, p. 1), and over 70% of individuals supported in Thurston–Mason counties participate in integrated employment. Again, these states provide evidence that state policy and strategy can support dramatically different outcomes for individuals.
Weikle raises a question about recognizing personal values and world views. The Institute for Community Inclusion (Boston, MA) has conducted numerous studies that explore the values of individuals who are being supported in employment. For example, Cohen (2005) found that individuals in workshops had differing opinions about where they wanted to work. Some wanted to work in the community and were adamant about wanting to leave the workshop, whereas others were very committed to staying or had left the workshop for a job in the community and had chosen to return. An important mediating factor for individual preferences was the type of choices and experiences individuals had been exposed to and how their experiences shaped their views and values. As collaborators in a system of care, we need to do a better job of offering meaningful choices and enabling people to have experiences that enrich their lives while valuing the importance of relationships that form in the workshops. People do not have to work in sheltered workshops to maintain important friendships. As Weikle notes, he is a fan of vintage cars and associates with individuals who have similar interests; it is likely that he sees these friends outside of work, in the evenings or on the weekends. He does not have to work with them to maintain ties. In addition, he has established a multitiered identity, but he implies that people with disabilities are principally defined by their disability. It is critical that we help individuals with disabilities develop “dynamic selves” (Noonan et al., 2004), with multiple defining characteristics such as religion, ethnicity, gender, and interest areas. For individuals with disabilities to have the opportunities to truly connect with people and groups of their choice, they must be aware of the potential for other kinds of association.
So what challenges do we face? Clearly we need to begin providing experiences that support varied career paths earlier in individual's school experiences. We need to ensure that high-quality employment supports are readily available, including a choice among providers. We need to respect personal choice and support a wide range of career options through strategies like person-centered career planning, job creation and restructuring, and supported entrepreneurship. Work plays a central part in the lives of most adults. Approximately 78% of working-age adults without disabilities participate in the labor force, and work is a defining characteristic in most of our lives. Work is also an expectation and a necessity for most of us. It is reasonable for state and federal policies to raise the bar by establishing a similar expectation for individuals with developmental disabilities. Choice of a career path should be a primary focus in the supports we provide, but we are too quick to allow the decision to work or not to work to be a valued choice.
John Butterworth, PhD (email@example.com), Project Director, and Heike Boeltzig, MS, Research Associate, University of Massachusetts Boston, Institute for Community Inclusion, Boston, MA 02125-3393