751134

research-article2018
RPSXXX10.1177/1540796917751134Research and Practice for Persons with Severe DisabilitiesGilson et al.

Article
Research and Practice for Persons

Family Perspectives on Integrated

with Severe Disabilities
2018, Vol. 43(1) 20­–37
© The Author(s) 2018
Employment for Adults with Intellectual Reprints and permissions:
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and Developmental Disabilities DOI: 10.1177/1540796917751134
https://doi.org/10.1177/1540796917751134
journals.sagepub.com/home/rps

Carly B. Gilson1,2 , Erik W. Carter2, Jennifer L. Bumble2,

and Elise D. McMillan2

Abstract
Families are essential partners in efforts to elevate the employment outcomes of adults with intellectual
and developmental disabilities (IDD). We examined the employment-related expectations, preferences,
and concerns of 673 parents and other family members of adults with IDD. Participants prioritized paid
integrated employment over sheltered options, and such perspectives were strongly associated with the
recent employment status of their family member with IDD. In addition, they valued qualitative dimensions
of a potential workplace (e.g., personal satisfaction, social interaction opportunities) more highly than
prevailing employment metrics (e.g., rate of pay, hours per week, benefits). Multiple factors informed the
views of parents and other family members regarding integrated employment and the extent to which their
family member with IDD had been employed previously in the community. We offer recommendations for
research, practice, and systems change efforts aimed at raising expectations for and access to integrated
employment for adults with IDD.

Keywords
employment, families, attitudes, intellectual disability, systems change

Efforts to elevate employment outcomes for individuals with intellectual and developmental disabilities
(IDD) have dominated policy and practice for decades. Early investments focused on identifying alterna-
tives to sheltered workshops, demonstrating the employability of individuals with extensive support needs,
and developing new models of workplace support (e.g., Wehman, Hill, & Koehler, 1979; Wehman &
Kregel, 1985). More contemporary efforts have emphasized aligning policies, funding mechanisms, sup-
ports, and service delivery in ways that make integrated employment the first and preferred option for adults
with IDD (Butterworth, Christensen, & Flippo, 2017; Mank & Grossi, 2013; Martinez, 2013). Although
noteworthy progress has been made, the employment landscape remains stark and inconsistent. Although
some adults with IDD are making substantive contributions in the workplace, many more remain entirely
left out of the workforce (Butterworth et al., 2015; Carter, Austin, & Trainor, 2012).
Researchers have worked to identify the constellation of factors influencing whether adults with IDD
access integrated employment in their communities (e.g., Mastorell, Gutierrez-Recacha, Pereda, & Ayuso-
Mateos, 2008; Rose, Saunders, Hensel, & Kroese, 2005; Siperstein, Heyman, & Stokes, 2014). Although

1Texas A&M University, College Station, TX, USA

2Vanderbilt University, Nashville, TN, USA

Corresponding Author:
Carly B. Gilson, Department of Educational Psychology, Texas A&M University, College Station, TX 77843, USA.
Email: carly.gilson@tamu.edu
Gilson et al. 21

formal services and supports are clearly critical, the role of families also is essential. The majority of adults
with IDD reside with their families and only 25% are reported to access long-term services and supports
through the state (Braddock et al., 2015; Larson et al., 2015). Indeed, families (e.g., parents, siblings, other
close relatives) represent the most prominent and enduring sources of support and guidance for individuals
with IDD. Moreover, family involvement remains a hallmark of best practices in disability services (Keen,
2007; Reynolds et al., 2015); yet, little is known about the perspectives and priorities of these important
partners regarding the employment of their family members with IDD.
Several studies have found parental expectations to be strong predictors of post-school employment
outcomes among students with disabilities transitioning out of high school (Carter et al., 2012; Doren, Gau,
& Lindstrom, 2012; Simeonsen & Neubert, 2013). Most of these studies have addressed the preferences of
parents of school-age children. For example, Blustein, Carter, and McMillan (2016) found that 83% of
parents and other caregivers of children and youth (under age 22) with IDD considered it somewhat to very
important for their daughter or son to obtain a job in the community after graduation. Less is known about
the views of individuals whose family members with IDD are now adults. The importance they place on
employment experiences (e.g., integrated vs. sheltered employment) might influence the likelihood each
pathway will be pursued. Calls to transition from sheltered to integrated employment have garnered both
strong support and vocal opposition from families, suggesting very diverse priorities are held (Dague, 2012;
Migliore, Mank, Grossi, & Rogan, 2007). Knowing how family members of adults with IDD evaluate dif-
ferent employment pathways could inform approaches to advocacy, family support, and service delivery.
Community jobs can vary widely in terms of the benefits, opportunities, and supports they offer to an
employee. Knowing which aspects of a potential position family members are likely to prioritize when
considering local employment opportunities for adults with IDD is essential to understand. In other words,
it could shift pursuit of any job toward pursuit of the right job for an individual. Likewise, they may hold
concerns about an array of issues that could deter their family member with IDD from finding and maintain-
ing a job (Blustein et al., 2016). For example, parents and other family members may have uncertainty
about access to job-related supports, their family member’s motivation to work, or whether employers
would be willing to hire their family member. Understanding these priorities and concerns could provide
insight into why different people respond in different ways to the prospect of integrated employment.
The views and expectations of families may also account for why some adults with IDD are working and
others are not. Although scores of studies have explored predictors of integrated employment for individu-
als with disabilities, most have focused on transition-age youth and young adults (e.g., Alverson, Naranjo,
Yamamoto, & Unruh, 2010; Mazzotti et al., 2016). The ways in which individual, family, and community-
level factors combine to influence the likelihood of employment may look quite different for adults who
have long left the school system. A better understanding of these various influences could inform the design
and delivery of services for adults with IDD.
The present study examines the perspectives of parents and other family members within the context of
a multi-year systems change initiative designed to improve employment outcomes for individuals with
IDD. In 2012, Tennessee received a Partnership in Employment (PIE) Systems Change grant funded through
the Administration on Intellectual and Developmental Disabilities’ Projects of National Significance com-
petition. The purpose of this 5-year grant was to undertake coordinated efforts to ensure every Tennessean
with IDD would have the aspirations, expectations, preparation, opportunities, and supports to access inte-
grated and competitive work. From the beginning of this grant, we saw families as critical partners in this
work and knew it would be important to understand their priorities and concerns related to the pursuit of
employment. Therefore, we designed our statewide study of parents and other family members to address
the following research questions:

Research Question 1: What do family members view as important employment experiences?

Research Question 2: How recently and in what settings have adults with IDD been employed?
Research Question 3: What factors are associated with the importance family members place on com-
munity employment?
Research Question 4: What do family members consider to be important potential job features?
22 Research and Practice for Persons with Severe Disabilities 43(1)

Research Question 5: What concerns do family members hold regarding employment?

Research Question 6: What factors are associated with employment in the community?

Method
Participants
Participants were 673 parents and other family members of individuals with IDD. To be included in the
study, participants must have (a) had a family member (e.g., daughter, son, legal dependent, sibling) with an
intellectual disability and/or autism who was at least 22 years old and (b) lived in Tennessee. For each fam-
ily, we requested that only one individual complete the questionnaire about only one family member with a
disability. We pursued parents as respondents, but we recognized some adults with IDD would be living
with other family members. Most participants (76.7%) identified as the mother of the person with the dis-
ability; 10.5% as the father, 3.1% as a grandparent, and 2.4% as a legal guardian not related to the person.
Some participants (6.8%, n = 46) indicated they were another relative, including sister (n = 22), brother (n
= 4), cousin (n = 3), aunt (n = 2), or other/not specified (n = 15).
Most participants (81.3%) identified as White (non-Hispanic), followed by 14.9% Black/African American,
2.5% Hispanic/Latino, 0.6% Asian American, 0.4% American Indian or Alaskan, and 0.9% other. In terms of
participants’ highest level of education, 24.8% reported having a high school degree, 21.2% attended some
college, 10.3% had an associate’s degree, 15.9% had a bachelor’s degree, 19.1% had an advanced or graduate
degree (i.e., master’s, doctoral, or professional degree), and 8.6% reported none of the above. Most partici-
pants (89.3%) reported their family member with IDD lived with them in the same home. Almost half of the
participants (43.5%) indicated their community was suburban, followed by rural (37.9%) and urban (14.7%).
Demographic information for family members with IDD is summarized in Table 1.

Recruitment Procedures
Although the present article focuses on participants whose family member with IDD was above age 22, our
larger project focused on understanding family expectations, concerns, and needs for both children and
adults, before, during and after the school years (see Blustein et al., 2016). Recruitment and data collection
took place over 9 months. We sought to achieve broad representation from a sample reflecting the racial/
ethnic, economic, and geographic diversity of families across the state, as well as individuals whose family
members were not receiving formal, state-funded services. We partnered with state agencies and disability-
related organizations to extend study invitations to families across the state.

Reaching family networks.  We developed a multi-tiered approach that involved contacting an array of orga-
nizations, networks, and mailing lists focused on families of individuals with disabilities to identify those
who had relationships with our focus population. We created an extensive list of recruitment announcement
options (e.g., fliers, phone scripts, personalized email invitations), allowing partnering organizations to
adapt each to their best method for reaching families. The study questionnaire could be completed online
(i.e., REDCap platform; Harris et al., 2009) or via paper copy. We also attended community events (e.g.,
state disability conference, Special Olympics, district transition fairs) to distribute invitations and paper
questionnaires.

Partnering organizations. A total of 131 organizations, groups, and networks contributed to recruitment
efforts, including area Special Olympics programs (n = 22), disability services providers (n = 16), individ-
ual support/advocacy groups (n = 15), other sports and recreation programs and camps (n = 14), state Arc
chapters (n = 10), family support programs (n = 10), parent support groups (n = 10), Down syndrome sup-
port/advocacy groups (n = 7), faith-based ministries (n = 7), community extracurricular programs (n = 6),
University Centers of Excellence in Developmental Disabilities projects (n = 4), employment services
providers (n = 3), social services providers (n = 3), statewide advocacy organizations (n = 2), and other
organizations (n = 2). Most organizations (82%, n = 108) recruited participants by sending email invitations
Gilson et al. 23

Table 1.  Demographics of Adults with Intellectual and Developmental Disabilities (N = 673).

Variables % (n)
Gender
 Male 60.8 (409)
 Female 37.3 (251)
  Not reported 1.9 (3)
Primary or secondary disability label
  ID without autism 64.5 (434)
  Autism without ID 32.2 (217)
  Co-existing ID and autism 3.3 (22)
Age in years
 22-29 47.4 (319)
 30-39 30.8 (207)
 40-49 13.1 (88)
 50-59 6.4 (43)
  60 or above 2.4 (16)
Functional skills ratinga
 4-8 22.4 (151)
 9-12 32.7 (220)
 13-16 38.9 (262)
  Not reported 5.9 (40)
Disability severity reported
 Mild 17.8 (120)
 Moderate 49.0 (330)
 Severe 27.2 (183)
 Profound 3.9 (26)
  Not reported 2.1 (14)
Challenging behaviors exhibited in last 6 months
  Unusual or repetitive habits 42.3 (285)
  Uncooperative behavior 40.4 (272)
  Withdrawal or inattentive behavior 33.9 (228)
 Disruptive 26.0 (175)
  Socially offensive behavior 17.1 (115)
  Destructive to property 15.8 (106)
  Hurtful to self 14.9 (100)
  Hurtful to others 14.4 (97)
  None reported 40.4 (272)

Note. All percentages were rounded to the nearest decimal. ID = intellectual disability.
aRatings reflect a sum score across four items related to functional skills evaluated on a Likert-type scale (1 = not at all well to

4 = very well).

or announcements. In addition to general mailings, several organizations (e.g., Arc Tennessee, the state’s
Department of Intellectual and Developmental Disabilities, Autism Society of Tennessee) mailed copies of
the questionnaire to all families meeting our eligibility criteria. Mailed questionnaires included a cover let-
ter invitation and reply envelope. These organizations attached mailing labels on our behalf to preserve the
privacy of mailing lists. To reach Spanish-speaking participants, we worked with multicultural support
groups to translate and distribute the questionnaire.

Participant incentives.  We took several steps to secure a large and diverse pool of participants. First, partici-
pants were not asked to share any identifying information on the questionnaire. Second, we randomly
selected 50 participants to receive a US$25 gift card. We requested contact information on a separate form
24 Research and Practice for Persons with Severe Disabilities 43(1)

not linked to participant responses. Third, we designed the questionnaire to be completed in less than 30
min. Fourth, we offered both paper questionnaires and online questionnaires to capture a wide span of par-
ticipants, including those without Internet accessibility. Fifth, the questionnaire was available in English
and Spanish.

Measure
We developed a questionnaire to (a) understand family perspectives, priorities, and concerns related to
employment and community involvement of children and adults with IDD and (b) learn the resources and
training pathways they would find most helpful in supporting their family member. We created the question-
naire by drawing upon previous research on family needs and expectations (e.g., Beaver & Busse, 2000;
Carter et al., 2012; Grigal & Neubert, 2004; Wagner, Newman, Cameto, Levine, & Marder, 2007). The
sections of the questionnaire pertinent to the analyses in this article include: (a) demographic information
of family members with IDD (14 items), (b) employment perspectives and experiences (8 items), (c)
employment priorities and concerns (14 items), and (d) demographic information related to the participant
(9 items). These sections included a total of 45 items. We asked 12 family members of individuals with IDD
to take the questionnaire in draft form; they provided feedback via email related to the length, formatting,
and the clarity of several questions.

Demographic information of family members with IDD.  We asked participants to provide various information
about their family member with IDD. If they had more than one family member with IDD, we requested
they focus on only one for the questionnaire. (To ensure duplicate data on the same family member was not
submitted by multiple participants, we examined the participant demographic sections to ensure there were
no identical responses in the same zip code.) The demographic information included the family member’s
age, gender, and primary and secondary disability category when he or she had attended school. We asked
participants to describe their family member’s level of disability: mild, moderate, severe, or profound. We
assessed functional abilities using a measure consisting of four items related to how well the family member
performed independently: reading and understanding common signs, telling time on a clock with hands,
counting change, and looking up phone numbers and using the telephone. Response options were 1 = not at
all well, 2 = not very well, 3 = pretty well, and 4 = very well, and the total score was a sum of the four items
with a lower score reflecting greater functional deficits (see Table 1). These items were developed for the
National Longitudinal Transition Study-2 (https://nlts2.sri.com/) and used in several studies (e.g., Carter
et al., 2012; Shattuck et al., 2012). Cronbach’s alpha for these items was .88.
We determined the occurrence of challenging behaviors by asking participants which of eight behaviors
their family member had exhibited in the last 6 months (see Table 1). These items were drawn from the
Problem Behaviors Scale included in the Scales of Independent Behavior–Revised assessment (Bruininks,
Woodcock, Weatherman, & Hill, 1996). Participants could also indicate their family member had not exhib-
ited any of these behaviors in the last 6 months. Kuder–Richardson’s coefficient for this measure was .78.

Employment perspectives and experiences.  We asked participants to rate the importance of their family mem-
ber having each of the following employment options in the next 2 years: (a) work in a part-time job in the
community, (b) work in a full-time job in the community, (c) work in a part-time job in a sheltered work-
shop, and (d) work in a full-time job in a sheltered workshop. Responses were provided on a 4-point, Likert-
type scale (1 = not at all important to 4 = very important). Cronbach’s alpha for these four items was .79.
We then asked participants to report how recently their family member had each of these employment
experiences since exiting high school. Response options were in the last month, in the last year, more than
a year ago, I don’t know, or not at all (or not applicable). Cronbach’s alpha for these four items was .71.
Table 2 provides a summary of this section.

Employment priorities and concerns.  We asked participants to rate the importance of 12 different aspects of a
potential job using a 4-point, Likert-type scale (1 = not at all important to 4 = very important; see Table 3).
Cronbach’s alpha for these 12 items was .94. To explore concerns about success in the workplace, we asked
 Table 2.  Ratings of Importance and Participation in Employment Experiences.

Importance ratings of participating family Most recent employment

members (%) participation (%)

In the last In the More than I don’t

Employment experience Not at all A little Somewhat Very M (SD) month last year a year ago know Not at all
Part-time job in the community 29.6 8.2 17.0 45.2 2.78 (1.29) 33.8 29.5 19.8 1.4 15.5
(n = 631)
Full-time job in the community 47.8 12.4 15.1 24.7 2.17 (1.26) 20.7 24.7 21.8 0.0 32.7
(n = 636)
Part-time job in a sheltered 40.1 16.4 21.9 21.6 2.25 (1.19) 16.9 25.1 25.1 0.0 33.0
workshop (n = 629)
Full-time job in a sheltered 53.1 15.8 15.6 15.5 1.93 (1.14) 14.2 20.1 25.4 0.0 40.3
workshop (n = 621)

Note. Percentages are based on the number of participants who completed the given item. All percentages were rounded to the nearest decimal place.

25
26 Research and Practice for Persons with Severe Disabilities 43(1)

Table 3.  Important Features of Employment for Family Members with Intellectual and Developmental Disabilities.

Percentage of participants selecting rating

Not at all A little Somewhat Very

Item important important important important M (SD)
A job that brings personal satisfaction (n = 629) 13.5 3.7 11.3 71.5 3.41 (1.06)
Opportunities to interact with people (n = 633) 11.1 6.2 18.0 64.8 3.37 (1.01)
Opportunities to develop friendships (n = 635) 10.7 8.2 18.4 62.7 3.33 (1.01)
Access to supports at workplace (n = 633) 14.8 5.7 17.2 62.2 3.27 (1.10)
A match with my child’s interest (n = 634) 16.4 5.4 15.8 62.5 3.24 (1.13)
Availability of reliable transportation (n = 628) 17.4 7.3 14.3 61.0 3.19 (1.16)
A workplace that employs people with and 16.9 9.3 20.6 53.2 3.10 (1.14)
without disabilities (n = 632)
A flexible schedule (n = 624) 21.5 11.1 22.3 45.2 2.91 (1.19)
Availability of health benefits (n = 631) 29.3 9.7 14.9 46.1 2.78 (1.30)
Opportunities for advancement (n = 622) 33.6 17.5 19.3 29.6 2.45 (1.23)
A high pay rate (n = 635) 42.0 16.5 16.5 24.9 2.24 (1.23)
A high number of working hours (n = 628) 49.0 15.6 22.1 13.2 1.99 (1.11)

Note. Percentages are based on the number of participants who completed the given item. All percentages were rounded to the
nearest decimal place.

participants to rate the extent to which each of 14 factors (e.g., challenging behaviors, lack of accessible
transportation, social and communication skills; see Table 3) might deter their family member from finding
and maintaining a job. Ratings were provided using a 4-point, Likert-type scale (1 = not at all a concern to
4 = a major concern). Cronbach’s alpha for these 14 items was .91. We included an open-ended response
area in both sections for participants to add priorities and concerns not listed.

Demographic information of study participants.  We asked participants to provide demographic information

about themselves and their family, including their marital status, race/ethnicity, highest degree of formal
education, relationship to their family member with IDD (e.g., mother, father, grandparent), whether the
family member with IDD lives in the same home, total number of children in household, prior eligibility for
free or reduced-price meals when their family member with IDD was in school, and whether their commu-
nity is rural, suburban, or urban. We also asked participants for their zip code to track our representation
across the state.

Data Analysis Procedures

We used descriptive statistics to summarize how participants viewed the importance of each possible employ-
ment option and how recently their family member with IDD was employed in this setting, if at all (Research
Questions 1 and 2, Table 2). We used descriptive statistics to summarize ratings across 12 important job
features (Research Question 4, Table 3) and 14 potential job concerns (Research Question 5, Table 4). All
percentages and summary statistics were calculated based on the number of participants who completed the
given item.
We were interested in exploring factors that might contribute to community-based employment expecta-
tions (Research Question 3; i.e., linear regression) and participation in community-based employment
(Research Question 6; i.e., logistic regression; see Table 5). Before finalizing which variables to include in
these models, we computed correlation coefficients to examine the relation between dependent and inde-
pendent variables. Specifically, we computed Pearson correlation coefficients to examine associations
among continuous variables and used point-biserial correlation coefficients for combinations of continuous
and dichotomous variables (see Table 6). We removed variables in which the measures were functionally
similar and high bivariate correlations were present. For example, we removed the “functional skills”
Gilson et al. 27

Table 4.  Concerns Regarding Employment of Family Members with Intellectual and Developmental Disabilities.

Percentage of participants selecting rating

Not at all a A minor Somewhat A major

Item concern concern a concern concern M (SD)
Opportunities for on-the-job support (n = 636) 10.4 8.8 20.6 60.2 3.31 (1.00)
Ability to apply and find a job (n = 633) 13.6 9.5 17.2 59.7 3.23 (1.09)
Ability to be hired by employers (n = 633) 13.7 9.8 19.1 57.3 3.20 (1.09)
Social and communication skills (n = 637) 12.1 10.0 24.5 53.4 3.19 (1.04)
Safety on the job (n = 630) 14.4 13.7 19.7 52.2 3.10 (1.11)
Lack of reliable transportation (n = 633) 17.1 12.6 20.2 50.1 3.03 (1.14)
Ability to perform the job (n = 639) 12.7 13.3 32.1 41.9 3.03 (1.03)
Lack of accessibility to programs that support jobs 17.2 15.1 20.1 47.6 2.98 (1.15)
(n = 628)
Challenging behaviors (n = 634) 19.2 18.3 26.5 36.0 2.79 (1.13)
Job’s negative impact on benefits and insurance 24.2 16.4 19.2 40.2 2.76 (1.21)
(n = 629)
Work shifts impacting our family’s schedule (n = 629) 27.3 16.7 20.3 35.6 2.64 (1.22)
Motivation to work (n = 627) 27.3 16.1 25.2 31.4 2.61 (1.19)
Health issues (n = 636) 35.2 22.5 15.6 26.7 2.34 (1.21)
Hygiene (n = 635) 40.9 20.9 18.3 19.8 2.17 (1.17)

Note. Percentages are based on the number of participants who completed the given item. All percentages were rounded to the
nearest 10th of a decimal place.

variable from the model due to high correlations with disability severity. Among the independent variables
included in our analyses, none had correlations with each other that exceeded r = .31.
For our two linear regression models, the dependent outcome variables were continuous variables represent-
ing the importance ratings of community-based employment (i.e., full-time or part-time; possible range 1-4,
wherein 1 = not at all important, 2 = a little important, 3 = somewhat important, and 4 = very important).
Independent variables comprised binary variables and continuous variables. We created the following binary
variables: male (1 = male, 0 = female); presence of an intellectual disability (1 = intellectual disability, 0 = no
intellectual disability); participant race/ethnicity (1 = White; 0 = non-White); rural (1 = lives in a rural commu-
nity; 0 = does not live in a rural community); family member with IDD living in the same home as participant (1
= in the same home; 0 = not in the same home); and recent community-based employment of the family member
with IDD (1 = employed part- or full-time in community within past month or year; 0 = not employed in the past
month or year). We treated race/ethnicity and geographic locale dichotomously because of our interest in gauging
whether the importance placed on employment was different for minority families or families in rural communi-
ties, both of which often experience poorer employment outcomes (e.g., Ipsen & Swicegood, 2015). Continuous
variables included age of family member with IDD (range, 22-78 years; higher numbers reflect older adults with
IDD); disability severity (possible range = 1-4, wherein 1 = mild, 2 = moderate, 3 = severe, 4 = profound; higher
scores reflect higher degrees of disability severity); participant education level (possible range = 1-8; high school
to doctoral or professional degree; higher scores reflect more advanced levels of education); challenging behav-
iors (sum ranging from 0 to 6; higher scores reflect more varieties of challenging behaviors exhibited within the
previous 6 months); and job concerns (sum ranging from 1 to 14, based on number of items rated as being “some-
what or major concern”; higher scores reflect higher number of concerns).
We also conducted two logistic regression models with the dependent outcome as a binary variable rep-
resenting whether the family member with IDD had participated in full- or part-time employment in the
community in the last month or year (1 = has worked in the last month or year; 0 = has not worked in the
last month or year). All independent variables mirrored those we used for the employment expectations,
with the exclusion of recent community-based employment. In addition, we included importance ratings of
part- and full-time work in each model of the respective outcome.
28
Table 5.  Summary of Regression Analyses for Rating of Importance of Part- or Full-Time Work and Recent Integrated Employment.

Importance of Importance of
part-time work full-time work in Full-time employment
in community community Part-time employment in community in community

Variable Ba SEb B SE B SE Exp(B)c CId B SE Exp(B) CId

Intercept 3.02** 0.36 3.11** 0.36 −1.88 1.01 0.15 — −1.74 1.02 0.18 —
Male (vs. female)e −0.25* 0.10 −0.12 0.10 0.18 0.24 1.20 [0.74, 1.93] −0.08 0.25 0.93 [0.57, 1.51]
Age of family member 0.00 0.01 −0.00 0.01 −0.01 0.01 0.18 [0.97, 1.02] 0.00 0.01 1.00 [0.98, 1.03]
ID (vs. non-ID)e −0.16 0.11 −0.45** 0.11 −1.29** 0.25 0.28 [0.17, 0.45] −1.15** 0.27 0.32 [0.19, 0.53]
Disability severity −0.38** 0.07 −0.34** 0.07 −0.50** 0.19 0.61 [0.42, 0.88] −0.29 0.19 0.75 [0.52, 1.08]
Challenging behaviors 0.03 0.03 0.01 0.03 0.08 0.08 1.08 [0.93, 1.26] 0.10 0.08 1.11 [0.95, 1.28]
Job concerns 0.06** 0.01 0.03* 0.01 −0.05 0.04 0.95 [0.89, 1.02] −0.02 0.04 0.98 [0.92, 1.05]
Participant education −0.02 0.02 −0.02 0.02 0.03 0.06 1.03 [0.91, 1.16] −0.02 0.06 0.98 [0.87, 1.11]
White (vs. non-White)e −0.07 0.13 −0.28* 0.13 −0.42 0.33 0.66 [0.34, 1.25] −0.48 0.33 0.62 [0.33, 1.17]
Rural (vs. non-rural)e −0.04 0.15 −0.12 0.15 −0.43 0.37 0.65 [0.31, 1.35] −0.08 0.37 0.92 [0.45, 1.89]
Family member living at home (vs. living not at −0.07 0.17 0.13 0.17 0.78 0.48 2.17 [0.84, 5.60] 0.28 0.51 1.32 [0.49, 3.59]
home)e
Importance of part-time work in community — — — — 1.01** 0.13 2.75 [2.14, 3.54] — — — —
Importance of full-time work in community — — — — — — — — 0.73** 0.11 2.07 [1.68, 2.54]
Recent employment in community 1.05** 0.11 0.95** 0.12 — — — — — — — —

Note. ID = intellectual disability.

aUnstandardized regression coefficient. bStandard error of unstandardized coefficient. cOdds ratio for logistic regression. d95% confidence interval for odds ratio, upper and lower limits.
eThis was a dichotomous variable in which the variable label = 1 and all other values = 0.

*p < .05. **p < .01 (two-tailed test).

 Table 6.  Correlation Among Predictor and Outcome Variables.

Variables M SD 1 2 3 4 5 6 7 8 9 10 11 12 13 14
  1. Importance of part-time 2.78 1.29 —  
work
  2. Importance of full-time work 2.17 1.26 .69** —  
  3. Recent part-time employment 2.13 1.26 .52** .46** —  
  4. Recent full-time employment 1.74 1.22 .25** .43** .78** —  
  5. Male 0.62 0.49 −.12** −.08* −.09* −.09* —  
  6. Age of family member 33.08 10.46 −.00 −.02 −.01 .02 −.01 —  
  7. Intellectual disability 0.65 0.48 −.26** −.35** −.34** −.29** −.04 .02 —  
  8. Functional skills 11.47 3.70 −.48** −.38** −.34** −.21** .08* −.01 .22** —  
  9. Challenging behaviors 1.47 1.62 .09* .12** .13** .12** .03 .00 −.31** .12** —  
10. Job concerns 9.13 4.00 .18** .14** .09 .09* −.01 .06 −.12** .00 .24** —  
11. Participant education 3.29 2.11 −.05 −.03 −.01 −.05 .05 −.01 .04 −.03 .00 −.09* —  
12. White 0.81 0.39 −.04* −.09* −.05 −.13** .01 .01 −.04 −.03 .09* −.13** −.03 —  
13. Rural 0.15 0.35 .01 .87 .02 .03 −.10** .04 .01 −.02 −.03 .10* .07 −.31** —  
14. Family member living at home 0.90 0.30 .06 .12** .12** .10* .03 −.08* −.16** .06 .05 .12** −.13** −.14** −.05 —

Note. N = 673. Male (1 = male); intellectual disability (1 = intellectual disability); White (1 = White); Rural (1 = rural).
*p < .05. **p < .01.

29
30 Research and Practice for Persons with Severe Disabilities 43(1)

For our regression analyses, we hypothesized that the importance families place on employment
would be strongly associated with the characteristics of their family member with IDD (i.e., higher for
individuals with fewer challenging behaviors and had less severe disabilities), their family member’s
employment history (i.e., higher for individuals who had recently worked), their own qualities (i.e.,
higher for individuals with more education and who held fewer job-related concerns), and the locale
within which they lived (i.e., higher for families residing in rural communities). Likewise, we antici-
pated community employment would be less likely for family members with intellectual disability who
had more challenging behaviors, more severe disabilities, lived in rural communities, and were part of
families where less importance was placed on working in the community. These hypotheses emerged
from our examination of similar topics with families of younger children (Blustein et al., 2016) and
prior research suggesting variations in employment expectations and outcomes vary widely based on
a related individual, family, and community factors (e.g., Carter et al., 2012; Holwerda, van der Klink,
Groothhoff, & Brouwer, 2012).
We conducted several tests to identify potential issues within our dataset. First, we included collin-
earity diagnostics with the regression models to assess the extent to which multicollinearity was present
among our independent variables. The variance inflation factor for each of the independent variables
across our models was less than 1.5, indicating no potential for multicollinearity with these variables.
Second, we used the Shapiro–Wilk test to assess the extent to which the residuals of our linear model
violated the assumption of normality. Although the assumption of normality appears not to have been
met, ordinary least squares (OLS) regressions have a robustness to the normality assumption and as
such is not a large concern (e.g., Van Belle, 2008). Third, we examined the unstandardized regression
coefficients, standard errors, and significance of each variable in the model to isolate the correlational
value and weight of each variable, holding other variables in the model constant. The unstandardized
regression coefficients represent the amount of potential change of the dependent variable (i.e., partici-
pants’ expectations of employment) given an increase of one unit of the variable. Unstandardized
regression coefficients are expressed in the scale units of the variable of interest. A negative regression
coefficient represents a negative relationship between the independent and dependent variables.
Standard errors measure how precisely the model estimates the unstandardized coefficient’s value. That
is, the smaller the standard error, the more precise the estimate.
We did not impute values for the marginal percentage of missing data across our large sample (i.e.,
approximately 5% of missing responses across questions included for analysis). Instead, we reported
percentages and models based on the number of participants who responded. Although we could detect
no clear patterns of missing data across variables in the dataset, we did notice that missing data were
more likely to occur in the paper copy responses of the questionnaire format (n = 134) because partici-
pants were able to skip certain questions or sections, unlike the online version in which they were
required to complete some sections before advancing to the next page and ultimately being able to sub-
mit their full responses.

Results
What Do Family Members View as Important Employment Experiences?
We used descriptive statistics to understand how participants evaluated the importance of four employment
experiences (i.e., full- or part-time employment in the community and full- or part-time employment in a
sheltered workshop) for their family member with IDD (see Table 2). The employment experience with the
highest rating of importance was working at a part-time job in the community, with 62.2% of participants
indicating it to be somewhat or very important (M = 2.78, SD = 1.29). This was followed by a part-time job
in a sheltered workshop, considered somewhat or very important by 43.5% of participants (M = 2.25, SD =
1.19). Only 39.8% of participants identified working full-time in the community as somewhat or very
important (M = 2.17, SD = 1.26). Working full-time in a sheltered workshop was considered to be somewhat
or very important by 31.1% of participants (M = 1.93, SD = 1.14).
Gilson et al. 31

How Recently and in What Settings Have Adults with IDD Been Employed?
More than half of adults with IDD (54.2%) were reported to have participated in some form of employment
in the last month or year (see Table 2). Most (63.3%) reported to have part-time employment in the com-
munity, but other employment experiences included full-time in the community (45.4%), part-time in a
sheltered workshop (42.0%), and full-time in a sheltered workshop (34.3%). Since participants could indi-
cate their family member with IDD participated in up to four types of employment, percentages exceed
100%.

What Factors Are Associated with the Importance Family Members Place on Community
Employment?
We used correlational analyses and linear regression to understand the factors contributing to the impor-
tance participants placed on employment in the community. Expectations of part-time work in the commu-
nity had the strongest positive correlations with recent part-time employment in the community, recent
full-time employment in the community, challenging behaviors, and job-related concerns. These expecta-
tions were negatively correlated with being male, having an intellectual disability, disability severity, and
race/ethnicity. Similarly, full-time work expectations had the strongest positive correlation with recent part-
and full-time employment in the community, challenging behaviors, job concerns, and living at home with
the participant; the strongest negative correlations were with male gender, intellectual disability, disability
severity, and race/ethnicity.
We used these correlations to construct a linear regression analysis demonstrating the factors associated
with the varying levels of importance participants placed on community-based employment. A summary of
the unstandardized regression coefficients and standard errors of each of the 14 variables for these two
models is provided in Table 5. The first regression model accounted for 35% of the variance in importance
ratings of part-time community employment, R2 = .35, F(11, 446) = 22.83, p < .001. Higher importance
ratings of part-time employment were associated with females whose disability was reported to be less
severe, who presented more job-related concerns, and who had worked in the community in the last month
or year. The second model accounted for 29% of the variance in importance ratings of full-time community
employment, R2 = .29, F(11, 484) = 18.45, p < .001. Higher importance ratings of full-time employment
were associated with individuals who did not have intellectual disability (i.e., had autism), who were per-
ceived to have less severe disabilities, presented more job-related concerns, were non-White, and had
recently worked in the community.

What Do Family Members Consider to Be Important Potential Job Features?

We used descriptive statistics to summarize participants’ views on important features of a job. These fea-
tures are displayed in Table 3 and arranged from highest to lowest mean ratings. The items with the highest
importance ratings were as follows: a job that brings personal satisfaction (M = 3.41, SD = 1.06), opportu-
nities to interact with people (M = 3.37, SD = 1.01), and opportunities to develop friendships (M = 3.33, SD
= 1.01). The lowest mean values were found in opportunities for advancement (M = 2.45, SD = 1.23), a high
pay rate (M = 2.24, SD = 1.23), and a high number of working hours per week (M = 1.99, SD = 1.11).
Participants could also write in responses listing additional job features. The most common responses
related to the following topics: match with interests and strengths (n = 28), access to on-the-job supports
(n = 22), having an inclusive working environment (n = 21), and experiencing acceptance by employers
and co-workers (n = 10).

What Concerns Do Family Members Hold Regarding Employment?

Participants’ concerns related to the employment of their family member with IDD are summarized in
Table 4, also arranged by mean. The items reflecting greatest levels of concern were opportunities for
on-the-job support (M = 3.31, SD = 1.00), ability to apply and find a job (M = 3.23, SD = 1.09), ability
32 Research and Practice for Persons with Severe Disabilities 43(1)

to be hired by employers (M = 3.20, SD = 1.09), and social and communication skills (M = 3.19, SD =
1.04). The items reflecting the lowest levels of concerns were health issues (M = 2.34, SD = 1.21) and
hygiene (M = 2.17, SD = 1.17). Participants could also indicate additional concerns in the open-response
section. The areas of greatest concern were issues related to the individual’s disability (e.g., comprehen-
sion, social awareness; n = 12), access to transportation (n = 10), and negative treatment by others in the
workplace (n = 7). In both open-response sections, many participants (n = 47) wrote their family member
was unable to work at all for various reasons (e.g., health concerns).

What Factors Are Associated with Employment in the Community?

We used correlational analyses and logistic regression analyses to understand employment participation in
the community. Both recent (i.e., within the last month or year) part-time and recent full-time employment
in the community were positively correlated with importance ratings of part- or full-time community work,
challenging behaviors, and living at home. Negative correlations across part-and full-time community
employment were being male, having an intellectual disability, and greater disability severity. Full-time
community work was also positively correlated with job concerns and negatively correlated with race/
ethnicity.
We conducted two logistic regression models related to part- and full-time employment in the commu-
nity. A summary of the unstandardized regression coefficients, standard errors, and odds ratios of each of
the 13 variables for both models is provided in Table 5. For part-time employment in the community, a test
of the full model against a constant only model was statistically significant, demonstrating that these factors
contributed meaningfully to the likelihood of part-time employment, χ2 = 24.07, p < .001 with df = 13,
Exp(B) = 0.153. Nagelkerke’s R2 of .47 indicated a strong relation between this set of variables and having
recent part-time employment. Specifically, part-time employment was more likely for individuals who did
not have an intellectual disability, whose disabilities were considered less severe, and whose participating
family member placed higher importance ratings on part-time employment. Similarly, for full-time employ-
ment in the community, the constant-only model was statistically significant, χ2 = 123.18, p < .001 with df
= 13, Exp(B) = 0.320. Nagelkerke’s R2 of .35 indicated the relation between these same variables and recent
full-time employment was not as strong as for recent part-time employment. Moreover, high importance
ratings of full-time employment and not having an intellectual disability were the only statistically signifi-
cant factors in the model.

Discussion
Improving integrated employment outcomes for adults with IDD is at the core of current policy, advocacy,
and systems change initiatives (Butterworth et al., 2017; Mank & Grossi, 2013; Martinez, 2013). Recognizing
the substantial contributions parents, siblings, and other family members can make toward supporting
employment access, we sought to understand their views related to the employment of their family member
with IDD. Our findings offer insights into the priorities of families and the factors that may impact the out-
comes of adults with IDD.
The employment outcomes considered most important for adults with IDD varied considerably among
family members participating in our study. Pursuit of part-time employment in the community garnered the
largest support (i.e., considered somewhat or very important by 62.2% of participants). Although this pref-
erence aligns with contemporary calls to expand integrated employment opportunities (The Arc, 2012;
Martinez, 2013; TASH, 2009), the proportion of family members prioritizing this option was considerably
less than what we found in our study of family members of school-age children (under age 22) in the same
state (i.e., considered somewhat or very important by 79.7% of participants; Blustein et al., 2016). Moreover,
nearly half of family members (43.5%) considered part-time sheltered work to be somewhat or very impor-
tant. At the time of the study, more than 10,000 Tennesseans with IDD were served in facility-based and
non-work settings—approaches widely used in many other states as well (Butterworth et al., 2015). This
mix of views is not altogether surprising, as it is also apparent in other areas such as preferred educational
setting (e.g., de Boer, Pijl, & Minnaert, 2010; Leyser & Kirk, 2004; Palmer, Fuller, Arora, & Nelson, 2001)
Gilson et al. 33

and residential placement (e.g., Blacher, Kraemer, & Howell, 2010; Blustein et al., 2016). Such findings
highlight the complexities of establishing community employment as a preferred outcome for individuals
with IDD. Several factors were associated with higher ratings of the importance of part- or full-time employ-
ment in the community. Specifically, higher ratings were evident among participants who reported more
job-related concerns and were non-White, as well as for family members with less severe disabilities, who
were female, and who had recently worked in the community. Helping families formulate a cohesive vision
for integrated employment remains a critical step in both state and national efforts to elevate adult
outcomes.
Family members participating in our study tended to prioritize qualitative aspects of potential work
experiences over employment metrics widely used within the field. For example, they affirmed the impor-
tance of their family member with IDD accessing workplaces that were inclusive (i.e., employ people with
and without disabilities), individualized (i.e., bring personal satisfaction and matches their interests), and
interactive (i.e., provide opportunities for social connections and friendship development). In contrast, job
features such as high pay, abundant hours, and opportunities for advancement were considered less impor-
tant. In our view, such findings should not minimize pursuit of good pay, adequate hours, and strong bene-
fits. Instead, they call for much broader consideration of what constitutes successful job placement and
highlight the importance of inviting the input of families.
Participants also raised a variety of concerns related to the involvement of their family member with IDD
in the workplace. Although some of these concerns centered on perceptions related to their family members’
capacities (e.g., ability to apply for and find a job, social and communication skills, ability to perform the
job), others addressed the availability of workplace (e.g., opportunities for on-the-job support, safety on the
job) or community supports (e.g., lack of reliable transportation, lack of accessibility to programs that sup-
port jobs). Indeed, nearly all participants affirmed more than one concern. The origins of these concerns are
unclear, however, as is the potential impact. In other words, we cannot determine whether these concerns
are only anticipated or are based on actual prior experience, nor do we know whether these concerns are
impacting participants’ pursuit of employment for their family member. Each reflects areas in which addi-
tional information, instruction, resources, or supports may need to be offered by employment agencies or
disability organizations (Gilson, Bethune, Carter, & McMillan, 2017). Moreover, these findings reinforce
the importance of understanding the underlying concerns and questions of families when addressing
employment.
We identified a strong association between the importance participants place on integrated employment
and the extent to which their family member with IDD was working in the community. Such a finding sup-
ports prior studies documenting the link between family expectations and subsequent employment among
transition-age youth with disabilities (e.g., Carter et al., 2012; Chiang, Cheung, Li, & Tsai, 2013; Doren
et al., 2012). Collectively, these findings lend strong support to the importance of understanding the expec-
tations families hold regarding how to enhance employment pathways of adults with IDD. The influence of
families should drive the field to deepen its awareness of family perspectives and priorities.

Limitations and Future Research

Several limitations to this study provide important avenues for future research. First, although we were able
to obtain a large sample involving at least one participant from 95% of counties in our state, we are unable
to calculate a definitive response rate. As no exhaustive list of families existed in our state, we used multiple
approaches to identify and invite families.
Some of our recruitment approaches (e.g., fliers, e-newsletter postings, website blurbs) made tracking
the exact reach of the invitation impossible. As the majority of adults with IDD and their families fall out-
side of the adult service system in Tennessee, the extent to which our sample is representative of all families
in the state is difficult to discern. For example, the relatively high reports of recent employment participa-
tion could be reflective of recruitment bias. Although we took several steps to recruit through both formal
(e.g., service providers, advocacy groups) and informal networks (e.g., parent groups, special recreation
programs, faith-based networks), future studies should explore additional recruitment avenues to ensure the
voices of all families are considered within this line of research. Likewise, perspectives are likely shaped by
34 Research and Practice for Persons with Severe Disabilities 43(1)

opportunities, resources, supports, and cultural considerations that vary widely across states and regions.
We encourage other researchers to replicate this study in different geographic and cultural contexts that may
differ substantially from Tennessee.
Second, our findings reflect the perspectives of just one person in a household, and our sample com-
prised primarily of mothers. It is unclear whether all family members are likely to share similar views on
employment, nor how divergent viewpoints are being navigated within a family. Future studies should
intentionally address how expectations are formed within families, including how the views of these indi-
viduals align or diverge from their family members with IDD.
Third, our use of a questionnaire for data collection limited our ability to obtain a more nuanced under-
standing of how families think about employment. We are particularly interested in learning more about
how people’s priorities develop, the ways in which they weigh their priorities and concerns against avail-
able options, and other unexplored factors that may shape their decisions. Interviews would provide an
appropriate method for obtaining more depth.
Fourth, our questionnaire was cross-sectional and conducted at a single point. Although we can speak to
the extent to which various factors are associated with importance ratings and employment experiences, we
cannot make causal links among these variables. Future studies should adopt a longitudinal approach in
which earlier expectations are examined against later employment outcomes (e.g., Carter et al., 2012).

Implications for Practice

Our findings have important implications for stakeholders invested in expanding access to community
employment for adults with IDD. Family members in our study vastly varied in their responses based on
perspectives, priorities, and concerns. Recognizing the strong association between the importance ratings
family members hold and the employment experiences of adults with IDD, it is vital to ensure all stakehold-
ers are exposed to knowledge of what can be possible. This could come in the form of trainings, family
support groups, or school and community collaborations developed during the school-to-work transition
years and maintained throughout adulthood.
The development of resources, training, and services should be tailored to address the needs and desires
of individual families rather than based on the assumption that everyone shares a uniform desire for inte-
grated employment. Many participants held views incongruent with current calls in the field and among
advocates. In fact, almost half of participating family members (43.2%) rated segregated pathways (e.g.,
sheltered workshops) more important than integrated employment. Considering the diversity among fami-
lies, practitioners, and policymakers, we cannot assume that there is only a singular pathway to employment
and thus cannot offer a “one-size-fits-all” approach to training, services, and resources. Instead, it is impor-
tant to ask thoughtful, individualized questions of families to discern their beliefs and perspectives, and
shape training and resource offerings accordingly with these priorities (Gilson et al., 2017). Practitioners
and service providers must be able to navigate balanced conversations with families by introducing the
benefits of new possibilities while striving to understand the reasons underlying different preferences.
The employment-related concerns identified in this study represent a call to employers to expand oppor-
tunities for adults with IDD. One of the greatest concerns in this study related to the ability of family mem-
bers with IDD to find a job and be hired. This could have been based on the participants’ beliefs or prior
experiences in which employers in the community were not openly receptive to hiring people with disabili-
ties. Employers should partner closely with families and make their willingness to hire known in the com-
munity at large. Similarly, many participants worried about the availability of on-the-job support and the
accessibility of employment programs. Thus, even if employers demonstrate a willingness to hire individu-
als with IDD, it is the joint responsibility of the employer and the disability service provider to ensure
individuals with IDD are successful and well-supported in the workplace.

Authors’ Note
Carly B. Gilson is now at Department of Educational Psychology, Texas A&M University, College Station. This work
was completed during her time as a doctoral student at Vanderbilt University.
Gilson et al. 35

Acknowledgment
The authors are grateful for the contributions of Scott Blain, Amy Gonzalez, Steven Greiner, Carrie Guiden, Sarah
Harvey, Lynnette Henderson, Elizabeth Hill, Robert Hodapp, Rachael Jenkins, Cecilia Melo-Romie, Kevin Raley,
Janet Shouse, Christopher Thompson, and more than 40 organizations and agencies comprising the TennesseeWorks
Partnership.

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: Support for this work came through 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. Partial financial support also came from a grant to the Vanderbilt Institute for Clinical and Translational
Research (UL1 TR000445) from the National Center for Advancing Translational Sciences and National Institutes
of Health.

ORCID iD
Carly B. Gilson  https://orcid.org/0000-0003-2579-8162

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Author Biographies
Carly B. Gilson is an assistant professor of special education at Texas A&M University. Her research focuses on sup-
porting individuals, educators, and families through the school-to-work transition and strengthening employment-
related social skills for adolescents and young adults with intellectual and developmental disabilities.
Erik W. Carter is 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.
Jennifer L. Bumble is a doctoral student in the Department of Special Education at Vanderbilt University. Her research
focuses on community engagement to improve employment, higher education, and independent living outcomes for
youth with intellectual and developmental disabilities.
Elise D. McMillan is Co-Director of the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities at
Vanderbilt University Medical Center and a Senior Associate in the Department of Psychiatry and Behavioral Sciences.
She holds leadership positions with TennesseeWorks, Tennessee Disability Pathfinder, and Next Steps at Vanderbilt.

Received: July 12, 2017

Final Acceptance: December 7, 2017
Editor in Charge: Stacy K. Dymond