Family Perspectives on the Appeals of and Alternatives to Sheltered Employment for Individuals with Severe Disabilities

Abstract

Although calls to expand integrated employment opportunities have permeated recent legislative and policy initiatives in the United States, substantial numbers of adults with severe disabilities still work in segregated settings. We examined findings from events held in eight communities to solicit the views of parents and other family members (n = 93) on the state’s shift from sheltered to integrated employment. Our interest was in understanding what maintained their attraction to segregated work settings and which factors would lead them to consider community employment as an appealing alternative. The considerations raised by participants were wide-ranging and highly individualized. However, factors related to ensuring safety, the availability of personal supports, and opportunities for relationship development were pronounced across these geographically and economically diverse communities. We offer implications for research and policy aimed at changing the employment landscape for individuals with severe disabilities.

Keywords

intellectual disability competitive employment policy community conversations

A good job in the community can have a powerful impact on the lives of adults with severe disabilities (e.g., Beyer, Brown, Akandi, & Rapley, 2010; Butterworth, Hiersteiner, Engler, Bershadsky, & Bradley, 2015). The wages and benefits available through competitive employment can certainly contribute to a person’s financial health, independence, and dignity. But inclusive work experiences can also lead to new friendships, provide a place of belonging, support valued roles, promote a sense of accomplishment, create access to other community activities, offer career advancement opportunities, and enhance overall well-being. Just as important, communities can also benefit from making this investment (e.g., Lindsay, Cagliostro, Albarico, Mortaji, & Karon, 2018; Lysaght, Ouellette-Kuntz, & Lin, 2010; Scior & Werner, 2016). Employers are positively impacted by the stability, commitment, and contributions that can come from having well-supported employees with severe disabilities. Moreover, others in the community come to see people with severe disabilities as individuals who bring talents, gifts, and positive qualities that make them indispensable. This constellation of mutual benefits lies behind the continued push to expand access to integrated, competitive employment throughout the United States (e.g., Butterworth, Christensen, & Flippo, 2017; Martinez, 2013; TASH, 2009).

Despite long-standing calls to elevate employment outcomes, integrated employment has still not been adopted in widespread ways. Fewer than one fifth of adults with intellectual and developmental disabilities hold a paid job in the community (Butterworth et al., 2015; Siperstein, Heyman, & Stokes, 2014; Winsor et al., 2017). Instead, most adults with severe disabilities are either unemployed or receive services in facility-based, sheltered workshops. For example, Carter, Austin, and Trainor (2012) found that a fairly small proportion (26%) of young adults with severe disabilities were working up to 2 years after high school and almost half were working in segregated settings. Domin and Butterworth (2016) found that the most common employment service for individuals with intellectual and developmental disabilities was facility-based work, which supported nearly one quarter (24%) of individuals. As of 2015, more than 130,000 adults with disabilities were served in sheltered workshops compared to 113,000 adults served in integrated employment (Winsor et al., 2017).

National policy has shifted away from segregated employment (Butterworth et al., 2017; Martinez, 2013). For example, accountability indicators within special education require tracking of the percentage of youth who are competitively employed after exiting high school (Alverson, Naranjo, Yamamoto, & Unruh, 2010); both the Workforce Innovation and Opportunity Act of 2014 and Medicaid Home and Community-Based Services (HCBS) regulations of 2014 identify integrated competitive employment as the prioritized outcome; and settlement agreements with the Department of Justice explicitly address ensuring access to quality employment outcomes. Integrated employment at competitive wages is now advocated as the first and preferred option for service delivery (Nord et al., 2015).

Personal perspectives, however, have been much slower to change. Studies examining the views of adults with disabilities (e.g., Dudley & Schatz, 1985; Murphy, Rogan, Handley, Kincaid, & Royce-Davis, 2002), professionals (e.g., Inge et al., 2009), and families (e.g., Dague, 2012; Francis, Gross, Turnbull, & Turnbull, 2014) regarding integrated and sheltered employment have produced a mixed portrait of priorities. For example, Migliore, Mank, Grossi, and Rogan (2007) interviewed or surveyed 619 adults with intellectual disability, family members, and staff—all of whom were connected to local workshops in a mid-Western state—about their preferences for employment settings. In contrast to the majority of families and staff who did not express a preference for employment outside of the workshop, almost two thirds (63%) of people with disabilities said they preferred community employment. In their statewide study of 673 parents and other caregivers in a southeastern state, Gilson, Carter, Bumble, and McMillan (2018) asked participants to rate the importance of their daughter or son having each of four different employment options (i.e., part- or full-time employment in the community or in a sheltered workshop) in the near future. Although integrated options were more highly preferred than segregated options, two fifths of participants considered a part- or full-time job in a sheltered workshop to be somewhat or very important for their daughter or son.

A variety of factors may shape the employment pathways families prioritize and ultimately pursue. For example, prior studies have highlighted concerns related to safety, the risk of social isolation, the adequacy of available supports, their family member’s ability to work, and the attitudes of employers (e.g., Francis et al., 2014; Gilson et al., 2018; Migliore et al., 2007). In the present study, we were interested in learning what parents and other family members found most appealing about segregated work settings—both for themselves and for their daughters, sons, or other relatives with severe disabilities who participated in these programs—and the factors that would lead them to consider community employment as a viable alternative. We sought to extend prior research by addressing a fuller range of factors that may maintain current placements and could drive future placement decisions.

A Partnerships in Employment Systems Change grant funded by the Administration on Intellectual and Developmental Disabilities provided the backdrop for this research. Launched in 2012, our systems change project (called TennesseeWorks) has focused on spurring changes in policy, practice, and perspective that enable (a) young people with intellectual and developmental disabilities to aspire toward competitive work from an early age; (b) families to pursue competitive work for their members with disabilities; (c) educators to prepare students for competitive work throughout their schooling; (d) service systems to support competitive work in every corner of the state; and (e) communities to receive the gifts and contributions of people with disabilities (Carter, McMillan, Willis, & TennesseeWorks Partnership, 2017). Early in our project, we held a series of successful “community conversation” events across Tennessee that brought diverse stakeholders together to identify creative and promising local pathways for connecting people with disabilities to meaningful employment in their local community (Bumble, Carter, McMillan, & Manikas, 2017; Carter et al., 2016). At the same time, changes in the policies and priorities of the state were pushing toward the conversion or closure of sheltered workshops. Indeed, more than 3,500 adults with disabilities were being served in these facility-based settings. Agency and organization leaders within the TennesseeWorks partnership proposed adapting the “community conversation” approach as a way of hearing the perspectives and recommendations of families who would be directly impacted by these systemic changes. Moreover, careful analyses of the issues emerging across different communities could provide a data-driven way to inform the future movements of agencies, organizations, and providers.

The purpose of this qualitative study was to explore the perspectives of parents and other family members on the transition from segregated to integrated employment. We examined the following questions:

What did these individuals say made sheltered employment work well for themselves and their daughter, son, or other family members with severe disabilities?

What made them reluctant to consider integrated employment as an alternative?

What supports or assurances would need to be in place for them to pursue integrated employment in the community?

Method

The Arc Tennessee and the Tennessee Department on Intellectual and Developmental Disabilities organized a series of listening events in eight diverse communities to invite the perspectives of parents and other family members on the conversion from sheltered to integrated employment. Researchers from Vanderbilt University supported the organizers in determining the structure of the events, writing the four discussion questions addressed at each event, developing the data collection tactics, and analyzing the findings. University institutional review board (IRB) approval was obtained prior to hosting these events.

Participants

To determine locations for each of the events, the organizers generated a list of all communities in Tennessee served by sheltered employment programs. They selected a subset of nine communities that would be heterogeneous in community size, economic opportunities, and racial/ethnic diversity. In addition, they selected communities in the three regions of the state to ensure geographic diversity. Among the nine communities that were selected, eight events were ultimately held. Table 1 displays demographics for these communities.

Table 1.

Demographics of Communities in Which Events Were Held.

Demographic variable	Communities								State
Demographic variable	A	B	C	D	E	F	G	H	State
Population of community^a	173,366	11,246	67,685	183,270	11,359	653,450	117,044	634,464	6,495,978
Percentage race/ethnicity^b
White	59.3	95.6	51.0	77.8	77.9	30.4	76.1	61.6	78.4
Black or African American	34.5	0.2	45.7	16.9	20.0	63.0	16.4	28.4	16.7
Hispanic or Latino	5.4	5.1	4.2	4.2	1.8	6.4	4.9	10.0	4.5
Asian	2.2	0.2	1.6	1.8	0.2	1.7	3.6	3.2	1.5
American Indian and Alaska Native	0.3	0.4	0.0	0.2	0.7	0.2	0.2	0.2	0.3
Percentage employed
All persons, ages 16+^b	63.6	58.8	59.7	65.6	51.2	60.6	68.4	69.6	56.0
Percentage of persons below poverty level^b	23.9	29.1	23.7	30.5	30.5	26.9	17.6	18.9	17.3
Percentage of persons with a disability (ages 18-64)^b	14.0	19.4	13.8	7.7	7.7	13.0	7.8	9.8	13.4

U. S. Census Bureau, Population Division.

U. S. Census Bureau, American Community Survey.

A total of 93 family members of individuals with intellectual and developmental disabilities participated in these events and it was their responses that were analyzed in this study. When asked to identify their specific family member roles, 75.3% (n = 70) were parents, 16.1% (n = 15) were other close relatives, 6.5% (n = 6) were siblings, 1.1% (n = 1) were grandparents, and 1.1% (n = 1) were multiple roles. For those family members who reported demographic information, 1.1% were 25 to 34 years old, 3.4% were 35 to 44 years old, 15.9% were 45 to 54 years old, 34.1% were 55 to 64 years old, 29.5% were 65 to 74 years old, 14.8% were 75 years old or over, and 1.1% did not report age. In addition, 82.1% identified as White, 16.7% identified as African American, and 1.2% identified their ethnicity as Other. Representatives from the organizing groups and some family members with intellectual and developmental disabilities were also present at the events. However, they did not sit with participating family members during the group discussions or did not share responses if facilitating a group’s conversation (see below). Instead, they assisted in logistics of the event or attended the opening presentation on federal- and state-level changes related to employment.

Conversation Events

In each community, the organizers worked with a local service provider to host the event. Five of the events took place at the service provider’s facilities and three took place in other community locations (e.g., a bank, a church). Planning began in the summer approximately 2 months prior to the events, and all events took place during a 2-month window in the fall. Invitations were extended to “family members and self-advocates” who were served within sheltered workshops in each region. The invitations described the purpose of the events as a “forum to learn about the changes impacting employment options for people with ID [intellectual disability], to share your thoughts on what works for you in the current system, and to share what needs to be in place for you to consider other employment options.” Flyers were sent electronically to families by local service provider agencies and the events also were announced in newsletters distributed by the Department of Intellectual and Developmental Disabilities.

Each 2-hr event was held on a weekday. Seven communities held two listening sessions on the same day—one from 1:00 p.m. to 3:00 p.m. and one from 5:30 p.m. to 7:30 p.m.—to accommodate the schedules of as many attendees as possible. In the eighth community, only an evening event was held. Upon arrival, attendees signed in, provided basic demographic information, and enjoyed light refreshments. They sat at unassigned tables (usually round) in groups of three to eight people (typically two to three groups per event). A facilitator (i.e., a representative from the organizing groups or a graduate student from the partnering university) was present at each table to structure the conversation. Facilitators received initial training from the organizer on their roles and most served at multiple events. Each session began with a 30-min presentation during which a representative from The Arc Tennessee shared information with families about federal- and state-level changes that could impact employment services for people with disabilities. The presentation addressed the Medicaid HCBS final rule, the increase in minimum wage to $10.10 for federal contracts, the potential elimination of section 14c of the Fair Labor Standards Act, the Governor’s Executive Order to expand community employment opportunities, the current employment-related grants in our state, and legislation impacting “state use” contracts.

The remainder of the event—on which our study focused—involved structured, small-group conversations among participants at each table. The table facilitators guided the participants through four successive rounds of discussions, each lasting about 20 min and addressing a different question: (a) What are the top three reasons that sheltered work settings work well for you as a parent or primary caregiver? (b) What are the top three reasons that a sheltered work setting works best for your son or daughter? (c) What are the top three reasons you are reluctant to consider work in the community for your son or daughter? (d) What are the top three supports or assurances that would need to be in place for you to consider community integrated employment options for your son or daughter? The participants at each table were asked to contribute their thoughts, while the table facilitators were responsible for keeping the conversation focused and writing down all responses in each group. The organizers provided each facilitator a set of instructions and four separate response forms. In addition, each participant was given a set of four numbered notecards, one for each of the four consecutive rounds of discussion. Each round followed the same procedure.

The facilitators began by posing Question 1 to the group. Participants were instructed to independently write their three strongest responses to the question on the corresponding notecard before any group discussion began. Once participants had written down their individual responses, the facilitators initiated the small-group discussion. Circling clockwise around the table, participants were asked to share aloud one response from their notecards, skipping any responses that duplicated an idea already shared by another participant at their table. Participants continued sharing and discussing responses from their notecards until all unique responses had been read. The facilitators wrote down a complete list of the responses from each round on a separate “group response form” which could be seen by all participants.

Once all responses were compiled and discussed, the facilitators led participants through a process to decide as a group which responses they considered most salient or important. The facilitators began by reading aloud all of the responses. Each participant then ranked his or her top three responses from the table’s written list (which was also shared verbally), and the facilitators tallied the votes for each response on the group response form, circling the collective top three responses. No personally identifiable information was written on the individual notecards or group response forms. This procedure was repeated for each of the four questions. At the end of the event, all of the notecards and group response forms were collected by the organizers.

Data Analysis

Coding was conducted by two members of the research team—one graduate research assistant and one faculty member in special education—who partnered with the organizers to conduct an independent analysis of the findings. We used content analysis (Neuendorf, 2017) to examine the full list of ideas generated within and across communities, as documented on both individual notecards and group response forms. We first transcribed all of the group response forms for each community event. This included the list of all responses compiled at the tables as well as the rankings of those responses. We compared this list to the individual notecards and added in any answers (n = 13) not reflected on a group response form. This process yielded 235 responses to Question 1, 229 responses to Question 2, 219 responses to Question 3, and 198 responses to Question 4. A couple sets of notecards were not returned to the event organizers at the end of the conversations, so they were not reviewed and included in our analyses.

After transcribing the responses for each table, we coded the responses into categories. The primary coder completed the first round of coding by grouping similar responses together into clusters. For example, responses such as “Gives her a sense of accomplishment” and “Proud of their accomplishments” were clustered together under the label feelings of accomplishment. Next, she repeated this process by combining similar clusters together. For example, clusters labeled feelings of accomplishment and self-worth/importance were grouped together under the category fosters pride and self-worth. The second coder independently reviewed both the original responses and tentative coding to help refine the codes and clusters. We continued to combine similar or overlapping clusters together until the list could no longer be condensed without compromising the meaning of each group of responses. At this point, no individual response could be appropriately categorized into another group of responses under the same heading. Unlike some qualitative studies, our goal was not to reduce these categories into a small number of themes (Hsieh & Shannon, 2005). Instead, we were interested in identifying the full range of factors families considered. This process resulted in 27 categories for Question 1, 23 categories for Question 2, 35 categories for Question 3, and 29 categories for Question 4. We labeled the categories for each question according to a uniform style for clarity. For Questions 1 and 2, which asked about participants’ positive feelings toward sheltered work settings, we used an action-oriented nomenclature and omitted pronouns (i.e., provides income, enjoys relationships with peers, offers familiarity/comfort). For Questions 3 and 4, which asked about their reluctance to consider work in the community and supports or assurances that would need to be in place for them to consider it, we used a statement-oriented nomenclature and omitted pronouns (i.e., concerns about bullying, lack of transportation, an enjoyable job). When related categories appeared across more than one question, we used similar wording to facilitate comparisons across rounds.

After we identified the full range of categories for each question, we used three different methods to summarize their weight and prominence. First, we calculated top-ranked by tables to provide a sense of how many times small groups of participants, after discussing all of the responses raised by anyone at their table, collectively prioritized a given response across all communities. We determined this by the number of times a given response was ranked as one of the top three most important by a table collectively, according to the top responses circled on the group response form. Second, we calculated top-ranked by families to provide a sense of how many of the event participants (out of 93 parents and other family members) prioritized a given response across all of the communities. We determined this by the number of times a given response was ranked as one of the top three most popular responses by participants at a table, according to the total number of votes attributed to each response on the group response forms. This method accounts for the differences in attendance and table sizes across communities. Third, we calculated community mentions to provide a sense of how widespread a view might be across the state. We determined this by the number of different communities (out of eight communities) in which a particular response was mentioned.

We took several steps to ensure our analyses were rigorous and our findings trustworthy. First, we solicited the perspectives of numerous family members living in multiple locales and supported by a variety of agencies. Our analyses focused on their own written ideas, as well as the summarized lists made by group facilitators in the presence of these participants. Second, we involved multiple researchers in the analyses to reduce the possibility of biased or idiosyncratic interpretations of participants’ responses. Third, we shared back our initial findings with the primary event organizers who had attended every meeting as a way of checking our conclusions and inviting additional critique.

Results

Tables 2 -5 display all categories emerging in response to each of the four questions. Each category is accompanied by a brief description and summarized three ways.

Table 2.

Reasons Sheltered Employment Works for Parents and Other Family Members.

Categories	Definitions	Top-ranked by tables		Top-ranked by families		Community mentions
Categories	Definitions	n	%	n	%	n	%
Provides a sense of safety	References to confidence in their child’s safety within the program	18	81.8	60	64.5	7	87.5
Availability of individualized support	Staff ability to meet unique support needs and provide individualized instruction	7	31.8	20	21.5	7	87.5
Promotes social interaction and relationships	Opportunities for child to have relationships and friendships with peers/staff	5	22.7	26	28.0	8	100
Provides a structured environment	Consistency in scheduling, staffing, daily routines; having a controlled environment	5	22.7	23	24.7	6	75.0
Experiences a sense of community	Having their child be in a community (e.g., feelings of comfort, among “like” people)	4	18.2	10	10.8	3	37.5
Provides somewhere to go	References to having a place for their child to go outside of the home each day	4	18.2	7	7.5	6	75.0
Enhances independence	References to their child’s independence, including independence from family	3	13.6	17	18.3	6	75.0
Accepted and treated with dignity	Acceptance of “odd” or challenging behaviors and still being treated as a person	3	13.6	11	11.8	3	37.5
Offers familiarity and comfort	References to life revolving around the workshop and comfort with being there long term	3	13.6	8	8.6	3	37.5
Provides purpose to the day	Purpose in reference to a reason to get up in the morning	3	13.6	7	7.5	4	50.0
Facilitates community participation	References to community activities and community inclusion	3	13.6	6	6.5	4	50.0
Provides respite for parents	References to parents having time to themselves	2	9.1	18	19.4	6	75.0
Provides a stable job	Appeal of the stability of workshop job	2	9.1	8	8.6	5	62.5
Adequate supervision	Confidence that sufficient levels of supervision are available in the program	2	9.1	5	5.4	4	50.0
Allows parents to work	References to their child having a schedule that allows parents to maintain employment	2	9.1	5	5.4	4	50.0
Addresses more than just work	References to collateral needs (e.g., medical, social, recreational) being met	1	4.5	14	15.1	4	50.0
Access to instruction and skill building	References to their child learning, growing, or developing skills	1	4.5	13	14.0	6	75.0
Fosters pride and self-worth	References to their child’s self-esteem and sense of accomplishment	1	4.5	10	10.8	5	62.5
Presence of trained staff	Comfort and confidence knowing staff are trained to deal with behaviors and health needs	1	4.5	10	10.8	4	50.0
Brings enjoyment	References to their child’s happiness and enjoyment within the program	1	4.5	6	6.5	4	50.0
Convenience for families	References to flexibility (of schedule) and locality of the program as a one-stop shop	1	4.5	4	4.3	4	50.0
Open communication with families	Ability to do unannounced visits and know what is going on regularly	1	4.5	1	1.1	3	37.5
Provision of transportation	References to the provision of transportation to the program	0	0.0	3	3.2	3	37.5
Provides something to do	References to keeping their child busy or occupied during the day	0	0.0	2	2.2	2	25.0
Addresses unique needs of seniors	The program as an appropriate work setting for older children past working age	0	0.0	1	1.1	1	12.5
Provides income	References to the satisfaction their child gets from earning income	0	0.0	1	1.1	3	37.5
Other parent benefits	Miscellaneous references to reduced stress, avoidance of embarrassment, or caregiving support	3	13.6	7	7.5	3	37.5

Table 3.

Reasons Sheltered Employment Settings Work for Adults With Disabilities.

Categories	Definitions	Top-ranked by tables		Top-ranked by families		Community mentions
Categories	Definitions	n	%	n	%	n	%
Provides a sense of security	General references to feelings of safety and security within the setting	8	36.4	24	25.8	5	62.5
Fosters friendships	Opportunities to build friendships or be with friends	7	31.8	31	33.3	8	100
Provides a structured environment	Benefiting from the structure, predictability, routine, and consistency	7	31.8	20	21.5	5	62.5
Promotes social interaction	Opportunities to socialize, to be around others, and to meet new people	6	27.3	25	26.9	7	87.5
Values the work	Indications their child likes the available work and wants to work	6	27.3	16	17.2	6	75.0
Facilitates community participation	Provides involvement in community-based activities and outings	5	22.7	10	10.8	6	75.0
Provides income	Enjoyment or pride in receiving a paycheck and making money	4	18.2	19	20.4	6	75.0
Brings enjoyment	Their child seems to enjoy going to the center; finds the activities, recreation, and socialization fun	4	18.2	9	9.7	6	75.0
Fosters pride and self-worth	Feelings of value, importance, confidence, maturity, self-esteem, accomplishment	3	13.6	17	18.3	4	50.0
Availability of individualized support and supervision	References to support needs being met and consistent staff	3	13.6	12	12.9	5	62.5
Provides a sense of purpose	References to having meaningful activities that give their child a sense of purpose	3	13.6	12	12.9	5	62.5
Provides somewhere to go	Having a place to go outside of the home each day	3	13.6	11	11.8	6	75.0
Accepted and treated with dignity	Having a place of acceptance without judgment or ridicule	2	9.1	9	9.7	5	62.5
Enhances independence	Giving their child feelings of independence	2	9.1	9	9.7	3	37.5
Provides something to do	Having something to do each day that fills the day	2	9.1	7	7.5	4	50.0
Teaches responsibility	References to gaining opportunities to learn responsibility	2	9.1	6	6.5	3	37.5
Learns new skills	Indications their child is learning new skills and enjoys this learning	2	9.1	5	5.4	5	62.5
Enjoys relationships with staff	References to their child developing positive relationships with staff	1	4.5	9	9.7	6	75.0
Experiences a sense of community	References to experiencing a positive community environment with peer support	1	4.5	9	9.7	5	62.5
Enjoys relationships with peers	Their child enjoys being around people who are similar to themselves	1	4.5	4	4.3	5	62.5
Have no other option	References the lack of any other available options that would meet their child’s supervision needs	1	4.5	2	2.2	3	37.5
Enjoys transportation	References to their child’s enjoyment of being provided transportation	0	0.0	2	2.2	2	25.0
Offers familiarity/comfort	Reference to their child having been in the same program since graduation	0	0.0	1	1.1	1	12.5

Table 4.

Reasons Parents and Other Family Members Are Reluctant to Consider Community Integrated Employment Options.

Categories	Definitions	Top-ranked by tables		Top-ranked by families		Community mentions
Categories	Definitions	n	%	n	%	n	%
Safety concerns	Hesitations related to general safety, physical safety, potential harm, and fear of unknown	11	50.0	38	40.9	7	87.5
Insufficient supervision	Anticipation of the lack of needed support staff and supervision in the setting	5	22.7	21	22.6	5	62.5
Lack of acceptance or understanding	Concerns about attitudes of community members or coworkers	4	18.2	23	24.7	6	75.0
Challenging behaviors	Low tolerance for unusual, inappropriate, or challenging behaviors (e.g., elopement, destruction)	3	13.6	17	18.3	2	25.0
Transportation concerns	Dearth of safe, viable, and reliable transportation to these settings	3	13.6	11	11.8	6	75.0
Unprepared employers	Lack of employer training, knowledge, and expectations around disability	3	13.6	7	7.5	5	62.5
Potential for abuse or harm	Fear their child might be abused, harassed, or taken advantage of	2	9.1	16	17.2	5	62.5
Fear of the unknown	General references to fear of the unknown	2	9.1	14	15.1	4	50.0
Lack of consistent routine	Anticipated lack of stability and structure in an integrated setting	2	9.1	14	15.1	6	75.0
Concerns about bullying	Fear of bullying, ridicule, poor treatment, cruelty from others	2	9.1	12	12.9	6	75.0
Family member’s ability to be safe	Their child’s limited awareness of danger, especially around others	2	9.1	9	9.7	6	75.0
Insufficient training available	Concerns about the paucity of on-the-job training	2	9.1	9	9.7	3	37.5
Negative prior experiences	References to past integrated employment experiences that were unsuccessful	2	9.1	9	9.7	4	50.0
Demanding nature of jobs	The demands and pressure of community jobs might be too much to handle	2	9.1	8	8.6	5	62.5
Difficulties performing jobs	Their child may lack skills and abilities needed to carry out their responsibilities	2	9.1	6	6.5	5	62.5
Interpersonal difficulties	The presence of poor social skills or their child’s discomfort around unfamiliar people	2	9.1	6	6.5	3	37.5
Lack of adequate support from others	Lack of onsite support staff or supportive network of peers and coworkers	2	9.1	5	5.4	6	75.0
Lack of interest for family member	Indications their child is not incentivized or motivated to work	2	9.1	4	4.3	3	37.5
Health-related concerns	Mentions of medical, dietary, mental, and physical health needs that might not be addressed	1	4.5	9	9.7	5	62.5
Communication limitations	Their child’s lack of an effective or reliable means of communication	1	4.5	5	5.4	4	50.0
A poor fit for family member	References to specific traits and preferences that make work a poor fit for their child	1	4.5	4	4.3	2	25.0
Concerns about permanence	Fear about what will happen if community work turns out to be unsuccessful	1	4.5	4	4.3	3	37.5
Lack of communication with caregivers	Concerns that they would not know about their child’s daily activities	1	4.5	4	4.3	3	37.5
Potential for embarrassment	References to the possibility that their child would experience embarrassment	1	4.5	4	4.3	2	25.0
Impact on benefits	Concerns about how a paid job would negatively impact their benefits or insurance	1	4.5	2	2.2	3	37.5
Unfair judgment	References to the potential discrimination or unfair treatment and judgment	0	0.0	7	7.5	3	37.5
Wage-related concerns	Concerns about inadequate wages, financial sustainability, or higher taxes	0	0.0	4	4.3	2	25.0
Cognitive limitations	Uncertainty about their child’s ability to understand the concept of a real job	0	0.0	3	3.2	2	25.0
Lack of structure	The likelihood that community jobs would be uncontrolled work environments	0	0.0	2	2.2	2	25.0
Physical limitations	Physical limitations that would impact their child’s ability to work	0	0.0	2	2.2	3	37.5
Self-care limitations	References to toileting needs that would be difficult to support	0	0.0	2	2.2	2	25.0
Parent preference	Statement of parent preference for their child to remain in their current placement	0	0.0	1	1.1	1	12.5
Socially isolating	The possibility of social isolation and lack of social interaction that might exist	0	0.0	1	1.1	2	25.0
Concerns about success	Expressions of doubt or fear of failure	0	0.0	0	0.0	2	25.0
Limited flexibility	Potential for the loss of scheduling flexibility for their family	0	0.0	0	0.0	2	25.0

Table 5.

Supports or Assurances Parents and Other Family Members Needed to Consider Community Work for Adults With Disabilities.

Categories	Definitions	Top-ranked by tables		Top-ranked by families		Community mentions
Categories	Definitions	n	%	n	%	n	%
Assurance of safety on the job	Ensuring general safety, having a safe environment, and promoting safety with others	10	45.5	36	38.7	7	87.5
Access to job coaching	Availability of one-to-one or long-term job coaching and associated funding	6	27.3	26	28.0	8	100
Individually assigned support person	Being able to have one-to-one support for their child on the job site	6	27.3	17	18.3	6	75.0
Disability training for employers/coworkers	Providing disability training for managers, supervisors, or coworkers	5	22.7	19	20.4	6	75.0
Presence of trained and consistent staff	Ensuring the regular presence of trained staff	3	13.6	15	16.1	4	50.0
Strong communication among everyone	Establishing open communication between family, employers, and agencies	3	13.6	13	14.0	7	87.5
Opportunities for positive social relationships	Finding friendly and supportive coworkers and inclusive opportunities	3	13.6	11	11.8	5	62.5
A strong job match with abilities	Finding jobs their child could successfully perform and reflect a strong job match	3	13.6	10	10.8	7	87.5
Appropriate accommodations	Provision of appropriate accommodations on the job	2	9.1	17	18.3	5	62.5
Availability of transportation	Efforts to meet existing transportation needs	2	9.1	15	16.1	7	87.5
On-the-job training to learn the job	References to ongoing support and training of their child	2	9.1	15	16.1	7	87.5
Adequate supervision	General references to the provision of full-time or sufficient supervision	2	9.1	13	14.0	4	50.0
Individual support needs met	Specific support needs met (behavior, self-care, toileting, dietary, communication, eloping)	2	9.1	8	8.6	4	50.0
Job security	Assurance of job sustainability or laws protecting their child’s job	2	9.1	8	8.6	2	25.0
Supports beyond work	Continued access to services beyond work (e.g., varied activities, support group)	2	9.1	7	7.5	3	37.5
Soft skills instruction	Opportunities to learn social skills, time management, or good appearance	2	9.1	4	4.3	1	12.5
An employer who is patient	Descriptions of patient, sensitive employers who will listen and not scream	1	4.5	6	6.5	3	37.5
Assurance of employers’ understanding of disability	Finding employers who are understanding and possess positive attitudes toward people with disabilities	1	4.5	5	5.4	4	50.0
Scheduling flexibility	Availability of shorter work hours, frequent breaks, or flexible schedules	1	4.5	4	4.3	5	62.5
Sufficient salary	Provision of sufficient salary or adequate wages	1	4.5	4	4.3	2	25.0
An accepting environment	A place marked by acceptance by others in the workplace	1	4.5	2	2.2	2	25.0
An enjoyable job	Having a job that brings their child satisfaction and enjoyment	0	0.0	6	6.5	5	62.5
Availability of safe transportation	Availability of safe, reliable transportation	0	0.0	6	6.5	3	37.5
A predictable environment	References to a controlled environment or the opportunity to work alone	0	0.0	4	4.3	3	37.5
Confidence benefits could be kept	Assurance that their child would not lose their benefits or needed insurance	0	0.0	2	2.2	1	12.5
Other motivators beyond pay	Provision of additional motivators or incentives to work	0	0.0	2	2.2	2	25.0
Backup plan if unsuccessful	Availability of a “trial and error” period or a “backup plan” if unsuccessful	0	0.0	1	1.1	2	25.0
Sufficient hours	A job that provides sufficient hours of work per week	0	0.0	1	1.1	2	25.0
A preferred job	References to their child having a choice of jobs that were preferred	0	0.0	0	0.0	2	25.0

Reasons Sheltered Employment Settings Work for Families

Participant responses to Question 1 (“What are the top three reasons that sheltered work settings work well for you as a parent or primary caregiver?”) spanned 27 categories (see Table 2). Nearly all of the categories were raised by multiple participants and across multiple communities. During the table discussions, the most often top-ranked responses by the group were provides a sense of safety, availability of individualized support, promotes social interaction and relationships, and provides a structured environment. Provides a sense of safety, which included references to their feeling that their child’s safety was being ensured within the sheltered setting, was top-ranked ranked by 81.8% of tables, making it the most strongly endorsed response for any of the four questions posed at the events. Indeed, this category was raised by nearly two thirds of all participants and prioritized by nearly all of the tables. The second top-ranked category was availability of individualized support (31.8% of tables), which included references to staff’s ability to meet unique support needs and provide individualized instruction. Although promotes social interaction and relationships and provides a structured environment were both top-ranked at almost one quarter (22.7%) of tables, the former was ranked highly by more individual participants and was the only category raised at all eight communities. Respectively, these categories included mention of opportunities to build relationships with peers and staff and to have friends, and references to consistency in scheduling, staffing, daily routines, and having a controlled environment.

Reasons Sheltered Employment Settings Work for Adults with Disabilities

Participant responses to Question 2 (“What are the top three reasons that a sheltered work setting works best for your son or daughter?”) spanned 23 different categories (see Table 3). All but one of the categories were mentioned by more than one participant and in more than one community. Those most often top-ranked at individual tables were provides a sense of security, fosters friendships, provides a structured environment, and promotes social interaction. Provides a sense of security was the most emphasized category (36.4% of tables) and included a range of references to the sense of safety or security that is available through the workshop. Fosters friendships and provides a structured environment were both top ranked at 31.8% of tables. Fosters friendships, which encompassed the opportunities their child had to build friendships or to be with friends, was also ranked highly by individual participants (33.3%) and was the only category for this question mentioned across all communities. Provides a structured environment—which included references to structure, predictability, routine, and consistency—was top-ranked by fewer family members (21.5%), but was mentioned in five communities.

Reasons Family Members Are Reluctant to Consider Community Employment

Participant responses to Question 3 (“What are the top three reasons you are reluctant to consider work in the community for your son or daughter?”) spanned 35 categories—more than any of the other questions addressed at these events (see Table 4). Almost all of the categories were ranked as a top response by at least one table, at least one individual participant, and more than one community. Safety concerns, insufficient supervision, and lack of acceptance or understanding from others emerged as the top-ranked reasons at tables. Safety concerns included references to general safety, physical safety, harm, and fear of the unknown. This category was the most frequently top-ranked response by tables (50.0%) and by individual participants (40.9%); moreover, it was mentioned in seven of eight communities. The second most emphasized category at tables was insufficient supervision (22.7%), which included concerns related to the lack of needed support staff and supervision that might be available through integrated employment. Lack of acceptance or understanding (18.2%) included concerns about acceptance, understanding, or criticism from community members or coworkers.

Supports or Assurances Needed to Consider Community Employment

Participant responses to Question 4 (“What are the top three supports/assurances that would need to be in place for you to consider community integrated employment options for your son or daughter?”) spanned 29 categories (see Table 5). The most prominent was assurance of safety on the job, which included references to ensuring the individual’s general safety, a safe environment, and safety with others. This category was top-ranked by almost half (45.5%) of tables. The second most emphasized category was access to job coaching (27.3% of tables), which reflected concerns about the availability of one-to-one or long-term job coaching, as well as the associated funding necessary to support this. This was the only category mentioned in all eight communities. The need for an individually assigned support person also received considerable attention (27.3% of tables), which referenced one-to-one support staff that extended beyond a designated job coach.

Although this question focused on the supports or assurances that would be needed to be in place to consider integrated employment, it is important to note that a number of participants provided responses that communicated a community job was not an option (i.e., it was not going to be considered). Indeed, this category was mentioned by 12 individual participants (12.9%), in three different communities (37.5%), and top-ranked at two tables (9.1%).

Discussion

The alignment of policies and perspectives is an important consideration within systems change efforts focused on expanding integrated employment (Flippo & Butterworth, 2018). Understanding how key stakeholders view the changes being pursued by state-level teams can provide a valuable source of information and guidance as states make progressive movements in this area (Carter et al., 2017; Gilson et al., 2018). We sought to understand what maintained the attraction of parents and other family members in our state to segregated employment options and inquired about the factors that would lead them to consider integrated employment options as an appealing and viable alternative. Our findings offer important insights for the large number of other states that are also invested in shifting employment opportunities from sheltered to community settings (Butterworth et al., 2017).

The ways in which participants articulated the appeal of sheltered employment and their priorities for integrated employment were wide ranging and highly individualized. We were struck by the number and variety of different factors emerging in response to each of the four questions—ranging from 23 to 35 categories (M = 28.5). With one exception (provides a sense of safety, Question 1), no single category was ranked in the top three by more than half of tables or individual family members. Instead, most categories were affirmed by less than 10% of individual participants and no two identified the very same combination of issues as another for any question. Such heterogeneity in perspectives is consistent with studies addressing issues as diverse as residential options, educational placements, and recreational programs (e.g., Jones & Gallus, 2016; Palmer, Fuller, Arora, & Nelson, 2001; Tsai & Fung, 2009). It is clear there exists no single family perspective on the pressing policy issues of the day. Such findings highlight the importance of asking individual families about their perspectives and priorities rather than making presumptions that they hold uniform or particular positions.

Amid this diversity of viewpoints, several topics did receive more attention from participants than others: safety, socialization, individualized attention, and structure. Across all four questions, the assurance of safety received the most emphasis. These family members spoke to its importance in a variety of ways, including having access to a safe environment, remaining safe from physical injury, and being free from abuse or harassment. This particular priority has been raised elsewhere as a prominent consideration when it comes to decisions about employment settings (Dague, 2012; Gilson et al., 2018). Such findings highlight the importance of addressing safety in conversations about the move from sheltered to integrated employment. At the same time, it may be worth exploring the source of this concern more thoroughly: Are such fears based on actual experiences or anticipated experiences? Is there compelling evidence that abuse, harm, and harassment is more likely in one setting over another? And what supports could be put in place to assure families that their members with severe disabilities are indeed safe in whatever setting they are served? Future research and practice should be aimed toward these questions.

Socialization—which typically referenced opportunities for developing relationships and friendships—was another noticeable category across questions. Participants indicated that they—and their daughters and sons with disabilities—valued the interaction and friendship opportunities available within workshop settings and wondered whether similar opportunities would exist through individualized jobs in the community. Moreover, participants also expressed fears of bullying and uncertainty about the attitudes their family members would encounter among coworkers and community members. The paucity of friendships among adults with severe disabilities has been well-documented (e.g., Fulford & Cobigo, 2018; Verdonschot, de Witte, Reichrath, Buntinx, & Curfs, 2009). Whereas the social connections adults develop within sheltered workshops may be immediately apparent to families, the promise of relationships with others in the community who do not have similar disabilities may require more imagination. Conversations about workshop conversions should explicitly address the ways in which existing relationships can be maintained and new relationships developed through well-planned opportunities and supports in the workplace (Timmons, Hall, Bose, Wolfe, & Winsor, 2011).

Participants also emphasized the importance of individualized support and supervision. In fact, the availability of high levels of individualized support was among the most highly valued aspect of sheltered workshops. Conversely, the presumed absence of insufficient supervision was the second most emphasized reason participants said they were reluctant to consider community employment for their daughters and sons. Such preferences for ongoing and individualized staff support resemble similar models of support advocated by parents in educational settings. For example, paraprofessionals are employed widely in elementary and secondary schools to address the educational and support needs of students with severe disabilities (Giangreco, 2010). Although the effectiveness of this approach has been questioned in school settings (Carter, 2018), limited research has examined the benefits and unintended consequences of such staff-heavy support models in the workplace. Conversations about workshop conversions should speak to the need for such intensive supports in the community and the avenues through which sufficient support would be provided in integrated workplaces.

Finally, participants felt that both they and their family members with severe disabilities benefited from and relied on the structure and consistency available through a sheltered workshop. For parents and other family members, this freedom was reflected in the predictability it afforded them to work, to manage their households, or to have a life outside their roles as caregivers. The importance of routine was also said to be salient for their daughters and sons. A number of participants indicated the familiarity of workshop routines enabled their family members to feel safe and function more successfully on a daily basis. Such issues will also be important to address in future conversations about conversions from sheltered to community employment. How might integrated employment—which so often involves part-time work for individuals with disabilities (Carter et al., 2012; Winsor et al., 2017)—be combined with other activities to establish predictable routines across weeks? In what ways might alternate plans be established so that individuals who lose their jobs are not left without support options while searching for another job?

Limitations and Future Research

Several limitations to this study suggest areas for future research. First, our findings reflect the vantage point of just one family member. We are uncertain whether the perspectives of other members within the same family (e.g., spouses, siblings) are likely to converge or diverge with those we heard through these events. Future studies should explore alignment of these viewpoints and address the ways in which such priorities are formed within families. Likewise, we did not solicit the views of individuals with severe disabilities who were being served in sheltered workshops or integrated employment (cf. Dudley & Schatz, 1985).

Second, we are limited as to what we can say about why participants held the particular views they shared. To protect the anonymity of attendees and create a context conducive to open and honest conversation, we opted not to audio- or video-record the events. Therefore, our analysis was limited to notecards completed by individual family members and group response forms completed by facilitators. Future studies could incorporate follow-up interviews or focus groups to allow deeper exploration of the experiences, values, expectations, and histories that led them to their present positions (e.g., Francis et al., 2014).

Third, we collected limited information about the family members with intellectual and developmental disabilities. Unlike professionals, disability advocates, state leaders, and others whose views about segregated and integrated employment are referenced to groups of adults with disabilities who have a particular label or meet certain eligibility criteria, the views of participants tend to be tied to their family members. In other words, the extent to which their child or relative has extensive support needs, challenging behaviors, complex communication challenges, special talents, or particular strengths are salient factors shaping their own preferences and priorities. Future studies should explore the ways in which the views of family members regarding integrated employment are influenced by these (and other) characteristics (e.g., Gilson et al., 2018).

Implications for Policy and Practice

Findings from this study have important implications for elevating integrated employment outcomes. First, this approach to gathering and soliciting the perspectives of families was both feasible and insightful. This adaptation of the community conversation approach (Carter & Bumble, 2018) could be applied to a range of issues of importance in the lives of individuals with severe disabilities (e.g., shifting from segregated to integrated residential, recreational, and educational options). Effective systems change projects must be marked by efforts to hear from, engage, and raise awareness among individuals working within (e.g., professionals), impacted by (e.g., individuals with disabilities, families), and living outside of (e.g., employers, civic leaders, community members) the disability service system.

Second, the priorities identified by participants in response to the fourth question highlight issues that should be addressed by local programs and state agencies as they work toward new employment options. Participants identified a range of supports or assurances that would prime them to pursue alternatives to segregated options. For example, answers should be prepared for how transportation will be provided, how supportive employers will be identified, how job coaching or ongoing supports would be arranged, how disability benefits will be impacted, and how any needed training would be made available to employers and/or employees.

Third, our state has used these findings to inform ongoing systems change efforts to increase integrated employment opportunities for people with severe disabilities. For example, the state’s new Employment and Community First (ECF) CHOICES program drills down employment supports into 14 discrete services. There also is an employment support option that allows a coworker to serve as a support on the job instead of using an outside provider. The state has also created a variety of other community services that could help create that consistent schedule mentioned by so many families.

Conclusion

Despite long-standing calls to expand integrated employment opportunities for adults with severe disabilities, the employment landscape in the United States is characterized by segregated experiences. Understanding of the perspectives and priorities of parents and other family members can be informative for states striving to build widespread support and strong capacity for integrated employment alternatives in local communities. We found the views of participants to be both individualized and insightful, reinforcing the value and necessity of intentionally soliciting stakeholder feedback as an ongoing element of our systems change efforts.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Partial support for this work came from a Projects of National Significance grant from the Administration on Intellectual and Developmental Disabilities, Administration for Community Living, U.S. Department of Health and Human Services, and Grant 90DN0294 to the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities.

Editor in Charge:

Paul Wehman

Author Biographies

Erik W. Carter is a Cornelius Vanderbilt Professor of Special Education at Vanderbilt University. His research and writing focus on promoting inclusion and valued roles in school, work, community, and congregational settings for children and adults with intellectual disability, autism, and multiple disabilities.

Sonni Bendetson is the founder of the Guidelight Group in Los Angeles, California, whose work supports adults with developmental disabilities and their families.

Carrie Hobbs Guiden is Executive Director of The Arc Tennessee. Her areas of work include secondary transition, employment, positive behavior supports, person-centered planning, alternatives to conservatorship, public policy, and systems change.

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