I'm Supposed to Be In Charge'': Self-Advocates' Perspectives on Their Self-Determination Support Needs - My Life My Decisions Inc
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INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 | OCTOBER 2011
‘‘I’m Supposed to Be In Charge’’: Self-Advocates’ Perspectives on
Their Self-Determination Support Needs
Stacy L. Nonnemacher and Linda M. Bambara
Abstract
In this qualitative interview study, we explored the perceptions of adults with intellectual disability
regarding interpersonal or social supports needed to express their own self-determination. Specifically,
10 adults, all members of a self-advocacy group, were asked to discuss their understanding of the term
self-determination and ways in which support staff have either supported or inhibited their self-
determination. Ten themes characterizing supportive and impeding staff actions were identified. The
need for greater exploration of environmental and social influences on self-determination is emphasized.
DOI: 10.1352/1934-9556-49.5.327
Supporting adults with intellectual disability In theory, individuals’ expression of self-determi-
to lead self-determined lives has been a salient focus nation is influenced positively or negatively by the
of both research and disability services for over interaction between one’s personal characteristics
two decades (e.g., Policy Research Brief, 2009; and environmental conditions (Abery, 1994; Field
Wehmeyer, 2001). The construct of self-determination & Hoffman, 1994; Wehmeyer & Garner, 2003).
carries multiple meanings. When defined from a per- Specifically, in describing the functional theory of
sonal and a psychological perspective, self-determination self-determination, Wehmeyer and Garner (2003) pro-
is characterized as ‘‘volitional actions that enable posed that (a) personal capacity, influenced by learning
one to act as the primary causal agent in one’s life history and personal development; (b) opportunity,
and to maintain or improve one’s quality of life’’ influenced by environment and experience; and (c)
(Wehmeyer, 2005, p. 117). From this perspective, supports or accommodations that enable people to
self-determination is viewed as a drive, motivation, exercise self-direction all impact the expression of self-
or trait. When the construct is applied to service determination. Although it may be tempting to focus
systems, self-determination is viewed as a right, on personal limitations, environmental influences, in-
referring to the freedom, authority, support, and cluding related supports, may be the most relevant for
responsibility needed for individuals to direct and adults with intellectual disability. Research supports
control their own services and budgets (Nerney, this supposition. Several studies have shown that
2007). Despite the variation in meanings, a con- adults with intellectual disability who live or work in
sistent thread is that self-determination is about more congregate settings display lower levels of self-
people self-directing their lives in positive ways. determination than those who live or work in more
Arguably, self-determination is the hallmark independentornonsegregatedenvironments(e.g.,Stan-
of adulthood and an essential attribute needed for cliffe, Abery, & Smith, 2000; Wehmeyer & Palmer,
achieving a good, quality life (Lachapelle et al., 2005; 2003; Wehmeyer & Schwartz, 1998). Further, when
Wehmeyer & Palmer, 2003; Wehmeyer & Schwartz, researchers controlled for personal characteristics, the
1998); but how does one come to express self- environment, and not intelligence, was found to be the
determination? This is a salient question given a significantcontributortoself-determination,confirming
strong consensus in the research literature that many therelativeimportanceandimpactofthisvariableonthe
adults with intellectual disability do not live very self- lives of adults with intellectual disability (Wehmeyer &
determined lives (Stancliffe, 2001; Wehmeyer, 2001). Bolding, 2001; Wehmeyer & Garner, 2003).
’American Association on Intellectual and Developmental Disabilities 327INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 | OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
Research on the environmental influences on adults with intellectual disability has been largely
self-determination is emerging. Beyond understand- limited to measuring their level of self-determina-
ing the broad impact of congregate settings, very tion, quality of life, or opportunities for choice and
little is known about specific environmental factors control (e.g., Lachapelle et al., 2005; Stancliffe &
that occur within and across settings that either Wehmeyer, 1995; Wehmeyer & Palmer, 2003) rath-
promote or hinder individuals’ expression of self- er than assessing their perceived support needs. By
determination. The setting itself may not be the contrast, national initiatives, such as Self Advocates
most influential variable, but, rather, the con- Becoming Empowered (SABE: http://www.sabeusa.
ditions within settings that foster self-direction may org) and the Robert Wood Johnson Foundation
be the most relevant (Wehmeyer & Bolding, 2001). self-determination projects (Robert Wood Johnson
The provision of choice is one variable that has Foundation, 2007), have actively sought and encour-
received considerable research attention, but a myr- aged adults with intellectual disability to speak-out
iad of other environmental factors, physical and about the services and supports needed to enhance self-
social, are likely to be influential (Stancliffe, 2001). determination. The resulting outcomes have broad-
One potential environmental influence that has ened our understanding of self-determination from the
received little research attention in relation to self- perspectives of self-advocates (e.g., Bradley et al.,
determination is the quality and type of interpersonal 2001); however, these initiatives have been focused on
supports provided to individuals with intellectual broad systems and policy changes needed for
disability by their family, friends, or support staff. consumers to direct and control services rather than
Given certain cognitive and physical limitations, to understand the influences of self-determination from
many individuals with intellectual disability are not a personal perspective.
likely to act completely autonomously but, rather, In a study related to the current investigation,
require the on-going assistance of others to participate Stoner et al. (2006) interviewed adults with physical
in daily decision-making and to advocate for their disabilities regarding their perceptions about factors
own preferences and needs (Thompson et al., 2009). that facilitated and impeded their self-determina-
The extent to which supporters through their daily tion. The participants described specific intrinsic
personal interactions can help foster or hinder indivi- (e.g., personal fortitude, self-doubt) as well as extrin-
duals’ expression of self-determination is especially sic or environmental variables (e.g., support net-
critical to our understanding as theoretically support- works, physical accessibility) that influenced their
ers create the conditions for self-determination. ability to be self-determined. Family support and
Several authors have speculated about the character- other social networks were identified as facilitators,
istics of interpersonal supports that may enhance self- bringing into the spot light the importance of more
determination. These include establishing trusting thoroughly investigating the nature of interpersonal
relationships (e.g., Kennedy, 1996), interpreting supports and their influence on self-determination.
and responding to nonverbal communication (e.g., Our purpose in this study, therefore, was to ex-
Brown, Gothelf, Guess, & Lehr, 1998), and provid- plore the perspectives of adults with intellectual dis-
ing on-going encouragement for and assistance with ability regarding the interpersonal or social supports
decision- making and other acts of self-direction (e.g., needed to express their own self-determination.
Bambara, Cole, & Koger, 1998; Lotan & Ellis; 2010); Understanding the perspectives of adults with intel-
however, these and other forms of interpersonal lectual disability regarding how to best encourage
supports on the expression of self-determination by their expression of self-determination is imperative
adults with intellectual disability have yet to be not only to develop meaningful supports that are
systematically documented by researchers. important to them, but also to target potential
Central to this discussion on interpersonal sup- environmental influences not previously explored by
ports is the attending to the voices of adults with researchers that may result in improved outcomes
intellectual disability regarding the types of supports for adults. Because support staff through community
they need or want. Rarely are the perspectives of disability services plays a major role in the support
individuals with disability included in the research of adults with intellectual disability, our focus was
literature in general (e.g., Robledo & Donnellan, on understanding staff actions that were perceived
2008; Ruef & Turnbull, 2002; Stoner, Angell, to support or impede self-determination. Using a
House, & Goins, 2006). With regard to published qualitative approach to inquiry, we interviewed well-
research on self-determination, the involvement of informed adults to talk about their self-determination
328 ’American Association on Intellectual and Developmental DisabilitiesINTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 | OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
and experiences with support staff. All participants through a disability service provider. As shown, the
were members of a self-advocacy group and were self-advocates were 6 women and 4 men, ranging in
knowledgeable and conversant about the topic of age from 24 to 56. With regard to present services, 7
self-determination. In addition, at the time of the self-advocates received staff support for residential
study, the participants received staff supports in com- living only; 1 received support for employment only;
munity settings. Specifically, we sought to answer the and 2 received staff support for both residential
following questions. How do the self-advocates with living and employment. With regard to present
intellectual disability define self-determination? What living situations most self-advocates lived in a 24-
staff actions do they perceive as supporting their self- hour group home or in a semi-independent living
determination? Conversely, what staff actions do they situation that provided less than 30 hours of staff
perceive as inhibiting their self-determination? support per week. One self-advocate lived in a family
living situation where the host family was paid to
provide care. With regard to present staff support
Method provided for employment, 2 self-advocates worked
Self-Advocate Selection and in a sheltered workshop. Outside of paid support, 1
Recruitment Procedures self-advocate, Marie, lived with her family and 7
Ten adult self-advocates with intellectual dis- self-advocates were either competitively employed,
ability who were members of one of two self-advocacy self-employed, or unemployed at the time of the
groups located in northeast Pennsylvania participat- interviews.
ed. To recruit participants, we asked mentors of the Past living and employment situations also varied.
self-advocacy groups who co-facilitated meetings with Some participants lived and worked in multiple situ-
group members to nominate individuals based on the ations within the past 10 years. Past living situations
following inclusion criteria: (a) diagnosis of in- that provided 10 hours or more of staff support in-
tellectual disability as evidenced by the receipt of cluded family, semi-independent, and group home
disability services (e.g., Medicaid Waiver), (b) a min- living as well as institutional placement in an Inter-
imum of 10 hours of staff support per week from a mediate Care Facility. Past employment situations
community, residential, and/or employment service providing paid staff support included sheltered work
provider, (c) conversational skills necessary to partic- and competitive community employment.
ipate in interviews, (d) conceptual understanding of
the construct of self-determination observed through Data Sources and Procedures
group discussions, (e) ability to articulate concerns We used one-on-one, in-depth semi-structured
about events that affect them, and (f) an expressed interviews to explore the self-advocates’ experiences
willingness to participate in the interviews. and perspectives concerning their self-determination.
All self-advocates nominated by the mentors par- Interviewing individuals with intellectual disability
ticipated. To establish a relationship with the nomi- may pose a number of challenges associated with the
nees and confirm that they understood the concept interviewees: (a) recalling experiences, (b) under-
of self-determination and had sufficient language skills standing and responding appropriately to open-
to respond to interview questions, the first author ended questions (particularly when questions exceed
attended monthly meetings with each group for 3 to their linguistic abilities), and (c) pleasing the inter-
4 months prior to conducting individual interviews. viewer with responses that they believe the inter-
Attendance at meetings continued for an additional viewer or others want to hear (Biklen & Moseley,
3 months during and after the interviews to maintain 1988; Finlay & Lyons, 2002). Interview procedures
relationships. were designed to address these challenges.
Following Seidman’s (1991) recommendations
Self-Advocates for conducting a multiple interview series, we inter-
Table 1 provides descriptive information for viewed each self-advocate twice. The first interview
each of the 10 self-advocates, including their age, encouraged free recall to open-ended questions and
gender, and ethnicity and the participants’ present general discussion about self-determination. In the
(during the time of the interviews) and past second interview we asked the self-advocates to
(within past 10 years) living and employment clarify their responses made in the first interview and
situations for which they received staff support to detail their experiences by providing specific
’American Association on Intellectual and Developmental Disabilities 329INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 | OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
Table 1 Demographic Information
Residential experiences Employment experiences
Present staff
Name Age support Present Past Present Past
Jerry 49 Residential Semi-independent Personal family, Competitive Competitive
semi-independent
with roommate
Mickey 56 Residential Group home Personal family Competitive, Workshop,
volunteer competitive
Bob 29 Residential Semi-independent Personal family, Competitive Competitive
group home
Phil 53 Residential Group home Personal family, None Workshop
institution
Joni 44 Residential Family living Personal family None Competitive
Carolyn 49 Residential Group home Family living, None Workshop
semi-independent
Dina 49 Residential/ Group home Personal family, Workshop Competitive
employment institution
Marie 24 Employment Personal family Personal family Competitive, Competitive,
volunteer volunteer
Carly 46 Residential/ Group home Personal family, Workshop Competitive
employment semi-independent
with roommate
Note. All participants were Caucasian.
examples. The two interviews were spaced less than were reminded periodically throughout each inter-
one month apart. Following a topical interview view that what they say would not be shared with
guide, the first author conducted all interviews, others (especially staff members) and that ‘‘I don’t
which ranged from 60 to 90 min. know’’ was an option for every question.
The interview guide consisted of open-ended Second, we asked self-advocates to define the
questions, examples of alternatively worded questions meaning of the term self-determination (e.g., ‘‘What is
that were used in instances when a self-advocate self-determination?’’ ‘‘Why is important?’’ ‘‘What
appeared to have difficulty comprehending a ques- things do you do to be more self-determined?’’).
tion, and sample follow-up probes that encouraged Third, we requested that they discuss their experi-
them to detail their responses. Before using the ences in which staff actions were viewed as
interview guide, we asked members at one self- interfering with their ability to express their self-
advocacy group meeting to provide feedback on the determination (e.g., ‘‘Can you tell me a story of
clarity of the questions and interview format outlined when a staff person did something that got in your
in the guide. Their feedback was used to shape the way of being self-determined?’’ ‘‘What things have
final protocol. you seen with other people with disabilities?’’).
We organized the interview guide around four Fourth, we asked self-advocates to describe their
broad categories. First, the self-advocates were perspectives about how staff members can help
oriented to the purpose of the study and asked to support their self-determination (e.g., ‘‘Can you tell
talk generally about themselves in an effort to build me a story of when a staff person did something that
rapport and reduce any uneasiness about partici- helped you be self-determined?’’). In addition to re-
pating in the interviews. To discourage interviewer- phrasing questions to ensure comprehension, the
pleasing statements, the interviewer stressed the interviewer frequently summarized and paraphrased
importance of speaking honestly. Self-advocates the self-advocates’ responses to ensure that she
330 ’American Association on Intellectual and Developmental DisabilitiesINTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 | OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
correctly understood their words and intended agreement. As needed, we continuously modified
meaning. domain codes or created novel ones as new concepts
All self-advocates chose to be interviewed in emerged from the interviews.
their homes in a private location. When given the Third, we abstracted the content of each do-
option of having a trusted person present for support main by preparing a succinct summary of each self-
during the interviews, 3 elected to have their mentor advocate’s core ideas. The goal here was to reduce
present. To reduce the possible influence of the the data in preparation for the cross analysis. A
mentor’s presence on participant responses (Biklen second team member audited the abstracts and met
& Moseley, 1988), we asked the mentor not to with the primary coder to come to consensus, making
participate in the interviews but, rather, to inter- sure that the wording of the abstracts was represen-
pret hard-to-understand communication between tative of the participant’s words and ideas.
the interviewer and the self-advocate only when Fourth, we conducted a cross analysis by com-
asked. If the mentor offered an interpretation, the paring all abstracted domains across participants. All
interviewer asked the self-advocate to verify its cases within abstracted domains were analyzed to
accuracy (e.g., ‘‘Judy said you were afraid. Is this determine similarities across participants and wheth-
true?’’). er or not abstracted ideas could be further coded into
smaller subcategories. A final comprehensive anal-
Data Analysis ysis linking domains and subcategories into themes is
A research team, consisting of the two authors reported below in the Findings. The research team
and a doctoral student in special education, con- reviewed the final themes to achieve consensus and
ducted the data analysis. All interviews were audio- to confirm that the themes were grounded in the
taped and transcribed verbatim by a professional data.
transcriptionist. The first author, responsible for the
interviews and the primary analysis, listened to the Member Check
tapes and corrected any inaccuracies in the tran- To verify that themes reflected self-advocates’
scripts. Data analysis of the transcribed interviews experiences, we presented a summary of the findings
progressed in four stages, following a modified ver- at two self-advocacy group meetings that were held
sion of the Consensual Qualitative Research proce- in different locations to elicit comments. At least 3
dure developed by Hill, Thompson, and Williams self-advocate participants were present at each
(1997). meeting. Specifically, we asked the group members
First, we developed a set of domain codes to to comment on whether the themes and illustrative
categorize the participant responses into related top- examples were typical to their experiences and those
ic areas. The process involved two team members of others with intellectual disability. Both groups
reading through the first three sets of interview indicated strong endorsement of the themes. Several
transcripts, generating an initial start list of domain members responded by providing additional exam-
codes based on participant responses, independently ples and telling their own personal stories. These
applying the codes to the first set of transcripts, and accounts were recorded in fieldnotes by the self-
then coming to consensus on the categorization of advocacy mentor and were integrated into the
text, modifying or creating new codes as needed to findings.
categorize all the data. This resulted in a start list of
20 domain codes that were then used to code the
Findings
remaining sets of transcripts.
Second, the primary coder applied the domain Here we describe how the self-advocates (a)
codes across all the remaining transcripts, resulting in defined the meaning of self-determination and (b)
the categorization of all text within the transcripts; perceived staff actions to either impede or support
however, we maintained and used original transcripts their ability to express their self-determination.
throughout all stages of data analysis to prevent
decontextualizing the self-advocates’ responses. Once Definition of Self-Determination
all transcripts were coded, a second team member Two themes seemed to capture the self-advocates’
audited the categorized text; any disagreements with understanding of the construct self-determination:
the primary coder were resolved through consensual speaking out and being in charge.
’American Association on Intellectual and Developmental Disabilities 331INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 | OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
1. ‘‘I’m my own advocate’’: Speaking out Staff Actions
When the self-advocates were asked, ‘‘How Ten themes characterized the self-advocates’ per-
do you describe self-determination,’’ they expressed ceptions about staff actions that influenced their abil-
a common view that self-determination was about ity to express their self-determination. These themes
speaking out on their own behalf about what they are organized by staff actions that either impeded or
wanted or did not want, and it was about making supported their acts of self-determination.
their intentions heard. Jerry said that being able ‘‘to
Actions Impeding Self-Determination:
talk about what I want’’ with others defined self-
determination for him. Similarly, Bob and Dina des- 1. ‘‘They’d boss me around’’: Usurping decision-
cribed self-determination as knowing ‘‘your rights’’ making and control
and talking about ‘‘what you want.’’ Bob defined self- All but one self-advocate relayed numerous in-
determination by stating, ‘‘Self-determination to me stances in which their opportunities to express self-
is how I moved out of a group home.’’ He explained determination were impeded when support staff
that when he learned from his caseworker that he made decisions for them. Based on the self-advocates’
had the right to ‘‘not to live in a group home,’’ he examples, congregate and family living settings posed
spoke out by making his desire to move known to his the most restrictions. For instance, Bob stated that
support staff. Jerry stated that if he did not speak out when he lived in a group home, he and his room-
on his own behalf, ‘‘nobody else would do it for me.’’ mates ‘‘[had] to do whatever staff says.’’ He ex-
plained, ‘‘They’d tell me what time to go to bed, what
2. ‘‘Being my own boss’’: Being in charge time to eat, and wherever the staff go, we’d have to
In addition to speaking out, being ‘‘in charge,’’ go.’’ Dina, who lived in an institution, reported being
or making and acting on decisions, also defined self- upset by having to eat dinner at three thirty in the
determination for the self-advocates. Phil said that afternoon, expressing that it was ‘‘so early for supper’’
when ‘‘the ball is in my court, I decide how things and that ‘‘people would be getting hungry’’ later
should be done.’’ In particular, the self-advocates in the evening. Cass, who lived in a family living
shared many examples of being in charge through situation, also spoke about the limited control she
daily choice-making, such as deciding what to do had over her daily activities.
during free time, choosing where to live or work, Staff control over decision-making extended be-
determining what to do with personal spending yond daily choices and often pre-empted opportuni-
money, and choosing to have intimate relationships ties for self-advocates to decide where to work and
with others. Joni said that choosing to have a live and with whom. After sharing an apartment
boyfriend and choosing what to do when she had free with a roommate without disabilities for years, Carly
time were ways that she was self-determined, while explained that one day she was informed by a pro-
Jerry stated that self-determination means, ‘‘Doing gram supervisor that her roommate no longer wanted
what I want.’’ Another self-advocate participating in to live with her and that she would be placed in a
one of the focus group meetings said that self- group home. Similarly, Phil reported that he moved
determination ‘‘means doing things for myself and from an institution to his group home without being
reaching my goals.’’ presented with any options. Concerned about their
Although the self-advocates emphasized being personal welfare, Carly and Marie angrily explained
in charge, 3 participants explicitly acknowledged that they and their friends were not given the choice
their need for support or assistance from others to of selecting their own roommates and support staff.
do so. Bob voiced that being self-determined meant Speaking about her friends, Marie said,
being ‘‘independent,’’ but if he needed, he knew
whom he could go to seek assistance ‘‘to be more They have a right to choose who they want in their group home.
They weren’t able to sit and say yes, will you like this person to
independent.’’ Jerry seemed to echo this sentiment
come in there? ‘‘NO,’’ we don’t want him working in the group
of being in charge while also securing help when home, because he’s mean.
needed. He stated:
Two self-advocates also expressed dismay about
I want somebody to help me, yes, I ain’t saying that [I don’t want their support staff changing their employment with-
someone to help me]. Everyone needs help. I need help, you need
help, everybody needs help. The point is, if I am going to be a
out consulting them. When Dina was asked what she
self-advocate, the first thing I could do is speak up for myself—to would have said if her caseworker had asked her
know what’s going on in my life. whether she wanted to change jobs, Dina stated, ‘‘I
332 ’American Association on Intellectual and Developmental DisabilitiesINTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 | OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
would have said to her, no, I want to keep the job.’’ for fear of undesired repercussions seemed to have
In summary, in sharp contrast to the self-advocates’ inhibited the self-advocates’ drive to speak out.
characterization of self-determination (i.e., speaking The lack of accessible or available support staff
out and being in charge), staff control over decision- also posed a barrier. Marie and Joni reported that
making was perceived as a major impediment to the when support staff were inaccessible or unavailable,
self-advocates’ expression of their self-determination. it was difficult for them to speak out about what they
wanted and carry out their intentions. When Marie’s
2. ‘‘He used to hold my money’’: Controlling personal job coach abdicated his responsibility of doing
spending weekly follow-up checks, she expressed dismay that
Staff control over personal spending money, she did not know whom she could to turn to and
resulting in the self-advocates either not having discuss this issue. Joni expressed that when her group
direct access their money or having to ask support home is understaffed, and only one staff person is
staff for daily spending money, was a significant available, she is unable to leave the group home
barrier to self-determination for 5 self-advocates. and do the things that she wants to do without her
They seemed to equate lack of control over their roommates.
money with lack of power or general control over
their lives. Phil reported that when he lived in 4. ‘‘I told her I wanted a job, but I haven’t seemed to
an institution, his money was locked in an office. get one yet’’: Failing to follow through
Mickey reported wanting to watch a truck pull Based on their accounts, there were times when
contest at a local fair, but when he asked his support the self-advocates clearly spoke out by making their
worker for money, the staff person refused by stating, intentions and decisions known; however, staff failed
‘‘That’s not nice, that’s not for you.’’ Three other to follow through by providing timely and needed
self-advocates who lived in group homes had to ask supports to help the self-advocates carry out their
for their money when they wanted to buy something intentions, which posed another barrier to their
and were not permitted to keep their money in their self-determination. Specifically, 6 self-advocates dis-
personal possession. cussed situations in which support staff either pro-
crastinated or did nothing at all to assist them.
3. ‘‘I can’t tell her I don’t like my job’’: Being Several self-advocates reported instances in
unapproachable or inaccessible which they informed support staff of their prefer-
Although not a staff action per se, self-advocates ence for a new job or living situation, but had to
perceived unapproachable or at times inaccessible staff wait before staff took any noticeable action to assist
persons as another impediment to self-determination. them. Mickey explained that his support staff did
Four self-advocates described situations in which they not listen to him at first after he declared that he
simply did not feel comfortable confiding in their wanted another job. Upset and unsure of why they
support staff or seeking their assistance when needed. did not listen, Mickey reported that it took a long
Dina explained that when she lived in the institution, time before his support staff finally helped him.
she was pressured by another resident to have sex. Similarly, Joni also reported that she told her staff
Although frightened by his advances, she was afraid to she wanted a job at Wal-Mart. She finally got the
speak out because it seemed as if ‘‘the staff didn’t care at job she wanted, but emphasized that ‘‘it took a
all.’’ She also feared that if she reported the situation, while.’’ Jerry declared that it took his support staff a
her support staff would tell the resident’s sister, whom long time to ‘‘hear’’ that he wanted a new place to
Dina perceived as being mean. Similarly, Mickey live. When a new apartment was found, he said, ‘‘It
reported that although he did not like the hard work was like a hurricane, like one, two, three and I’m in
and little money he made at the sheltered workshop, there. I didn’t know what really hit me. I still got a
he did not feel comfortable telling the workshop staff lot of stuff missing.’’
that he wanted another job. One self-advocate who Other self-advocates wondered whether some
participated in one of the focus groups seemed to offer a staff persons listened to them at all. Phil recounted
partial explanation. He bluntly stated that he stopped a time when he approached his staff about getting a
going to one support worker for help because the job. When asked if he thought his support staff
worker failed to follow through with his requests. listened to him, he stated sarcastically, ‘‘I haven’t
Overall, discomfort or hesitancy with approaching seemed to get one yet.’’ Carolyn stated that the
support staff for fear of staff not doing anything or reason that she was no longer interested in pursuing
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Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
a job was that her support staff did nothing to help saying ‘‘if you move out [she] wasn’t going to talk to
her, despite the fact that she clearly made her [Carolyn] anymore.’’ Taken together, these examples
desires known. of coercion (purposeful or not) suggest that support
Four self-advocates talked about the lack of staff staff, or others in position of authority, may at times
support around transportation. Living in rural areas distort facts, make false statements, or use their
with limited public transportation, Joni, Cass, Dina, position of power to impose their views or persuade
and Carly relied on their support staff to take them to self-advocates to change their decisions.
work or to desired community places and activities,
Actions Supporting Self-Determination:
yet the lack of staff assistance posed problems for
them. Cass said that her family living provider By contrast, five themes emerged that character-
declared that he was ‘‘too busy’’ to take her to self- ized the self-advocates’ descriptions of staff actions
advocacy meetings. Joni mentioned that she liked that supported their self-determination.
her job at Wal Mart ‘‘’till there was no buses; then I 1. ‘‘They point me in the right direction when I need
could not do the job.’’ One self-advocate who it’’: Expanding options and experiences to encour-
participated in a focus group explained that her age choice
desire to do something was constantly dictated by the
Nine self-advocates spoke positively about sup-
availability and willingness of her staff to provide
port staff who encouraged them to initiate choice-
transportation, not when she wanted or needed to do
making by presenting options and exposing them to
something. These self advocates viewed transporta-
new experiences. Phil, for example, reported that his
tion as means to their self-determination, and if staff
support staff helped him to find a new job, by
could or did not provide transportation, the self-
describing to him ‘‘what’s out there’’ and asking him
advocates were either left to find alternative methods
if he would like to learn more about available jobs in
or were left being unable to pursue their interests.
his community. Three self-advocates spoke fondly
about a support program that provided a monthly
5. ‘‘She said if I moved out she wasn’t going to talk to
recreation calendar in which activities and events in
me anymore’’: Obstructing and coercing
their area were listed. Joni talked about how the
Six self-advocates spoke candidly about an-
calendar made her think about new activities that
other way that support staff impeded their self-
she wanted to try. Dina revealed how experiencing
determination. This came in the form of obstructing
an option helped her to make a decision to move
or vetoing the self-advocates’ decisions, sometimes
from a large congregate care facility. Although she
through acts of coercion or manipulation. Mickey
admitted that she did not like living there, she
explained that he told both his mother and his
explained that she would have never considered
staff worker that he no longer wanted to work in a
moving out until her caseworker suggested she try
workshop, but was informed by both that he ‘‘had to
living in a group home on a trial basis.
stay,’’ totally disregarding his choice.
Three self-advocates described specific examples
Four self-advocates spoke about staff manipu-
of staff providing them with opportunities to make
lating the self-advocates’ view of a situation in an
frequent, daily choices in their homes, speaking at
effort to persuade them to do what staff members
length about support staff providing them with
thought was best. Jerry talked to his caseworker
options for meals. They expressed that even though
about wanting to move to his own apartment, but
support staff took primary responsibility for cooking
reported that, ‘‘they told me to wait until the end of
meals, they welcomed opportunities to make meal
July; now they’re trying to talk me out of it.’’ Bob
selections or choose something else to eat when they
explained that when he told his group home staff
did not like what was being served. Although these
that he was ‘‘ready’’ to move out, they responded,
choice opportunities seemed minor in comparison to
‘‘no, you’re not.’’ Similarly, when he told his boss
making decisions about employment and living
and job coach that he ‘‘doesn’t want to be doing
situations, they were nonetheless important to these
dishes the rest of life,’’ Bob’s boss responded that he
self-advocates.
was ‘‘the best dish washer ever.’’
Carolyn said that her family living provider 2. ‘‘I could go to somebody higher up’’: Supporting
threatened her to change her mind about moving access to people of authority
out. Carolyn reported that when she told the woman Eight self-advocates expressed that their self-
about wanting to move, the woman responded by determination was supported when they were able
334 ’American Association on Intellectual and Developmental DisabilitiesINTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 | OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
to access people of authority above their direct because of her relationship with her support staff
support staff who could make things happen for (one with whom ‘‘she is able to kid around with’’),
them. Based on the self-advocates’ accounts, the she is ‘‘fine’’ when her support staff makes sugges-
role of support staff was to either educate the self- tions for buying new clothes. Positive relationships
advocates about whom to go to for help or to assist built on trust and comfort seemed to foster the self-
the self-advocates to make connections with people advocates willingness to accept guidance and foster
in power. At least, supportive staff members did not their initiative to speak out.
appear to stand in their way. For example, Dina
4. ‘‘I will have the staff sit down … and I will sort out
stated that if she had an issue with a staff person
the choices’’: Listening without judgment
telling her when she should go to bed, she knew she Five self-advocates reported that their self-
could ‘‘go to somebody higher up’’ to express that determination was supported when support staff
she ‘‘should’’ be able to stay up later. Similarly ‘‘really listened’’ to them when they spoke out, rather
Carly, who was required to have 24 hours of staff than dismissing or ignoring their assertions. Implicit
support because of balance problems, planned to in their discussions, listening seemed to mean that
talk to the ‘‘big bosses’’ (i.e., residential program support staff took the time to understand the self-
directors) at her annual planning meeting about her advocates’ point of view, offered assistance when
desire to have time alone with her boyfriend. She they could, and refrained from imposing judgment or
stated emphatically, ‘‘We’ll talk about it at my their own position on the self-advocates’ decisions.
meeting.’’ Cass posed this question to one of her Carolyn, for instance, shared many examples
support workers, ‘‘What can I do if I had a problem about the choices she made, which included wanting
with somebody [staff person] and I didn’t know who to live in town, not wanting to work (especially not
to go to? Or, can I come to you to talk? Being in a workshop), going to bed early, and not wanting
supported to have access to people of authority to be part of a community club hosted by her
seemed to have provided the self-advocates with residential provider. Through these stories, Carolyn
a way to resolve issues that either involved their conveyed that support staff respected her recreation-
support staff or issues that their support staff could al, employment, and residential decisions because
not address themselves. they did not attempt to change her mind. Phil was
3. ‘‘I feel comfortable with her’’: Being approachable appreciative that when he and his friend approached
and accessible his group home staff and the residential director
Ways in which support staff fostered the self- about wanting to change group homes, his staff and
advocates’ expression of self-determination seemed program director did not question his decision or
rooted in the relationships formed between support ‘‘give their two cents’’ trying to persuade him dif-
staff and the self-advocates. An overarching premise ferently. Rather, he explained, they all sat down
expressed by 8 self-advocates was feeling comfortable together to devise a plan to move.
enough with their support staff in order to approach Three self-advocates acknowledged that there
them for help and accept their guidance when were times when support staff could not honor their
needed. Both Carly and Dina talked about liking requests or help them to act on their decisions.
certain staff persons and being able to tell them Rather than doing nothing or ignoring their requests,
anything. Carly explained, ‘‘It’s important to me if the self-advocates appreciated support staff who
you like your staff. You could talk to her about more, explained honestly why they could not help. Phil ex-
you could open up to them.’’ Dina indicated that plained that he usually talks to the program director
staff persons who are ‘‘nice and don’t boss her if he has an issue because she listens; but, he also
around’’ are the ones that she goes to if she needs understands that she ‘‘tells [him] what she can and
can’t do.’’
help in making decisions.
In addition to being liked, approachable staff 5. ‘‘Have staff in my corner, whatever I want to do,
persons were the ones the self-advocates trusted. they will help me’’: Providing support for follow
Dina made specific mention of trusting a staff person through
to the point of accepting her recommendations; she Lastly, and perhaps in the most obvious way, the
explained that she took her staff person’s advice self-advocates indicated that their self-determination
to change her job without trying it first because was upheld when support staff provided needed assis-
she ‘‘trusted her.’’ Similarly, Carly explained that tance to help them carry out or refine their decisions
’American Association on Intellectual and Developmental Disabilities 335INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 | OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
once they had spoken out. Based on the self-advocates’ as well. Several self-advocates gave examples of their
accounts, support for follow through took on various self-determination being supported when staff made
forms. First, 7 self-advocates spoke about support staff alternative arrangements for transportation or helped
sitting down with them to problem solve and plan a them manage, as opposed to controlling, their budgets
course of action. The key was not for staff to impose and spending.
their views but, rather, to provide information in the
form of options and advice for the self-advocates to
consider in their decision-making. For instance, 4 self- Discussion
advocates spoke about telling their support staff that In this study we explored the perceptions of self-
they wanted a new job, and how they felt sup- advocates with intellectual disability regarding their
ported when staff assisted them by looking through job understanding of the construct of self-determination
ads and describing available options. Similarly, Bob and the ways in which support staff have either
explained that when he declared that he wanted to facilitated or hindered their self-determination. Con-
move to a place of his own, his support staff helped sistent with the views of other self-advocates des-
him make decisions by explaining his financial situ- cribed in national reports (e.g., Bradley et al., 2001),
ation, looking at the classifieds together, and providing the participants described self-determination in terms
him with several apartment options to consider. of speaking out for themselves, being in charge,
A second form of support for follow through was making decisions, and having control over the things
when staff members encouraged or motivated the self- they want. Yet, at the same time, they seemed keenly
advocates to pursue their decisions and goals, Jerry aware of their personal limitations and restrictions
spoke appreciatively about staff members motivating imposed on them by their living and work situations
him on ‘‘days when he didn’t want to do things.’’ and, as such, turned to support staff or others for
When asked what motivating meant to him, Jerry assistance. The ways in which support staff created
replied, ‘‘To have them in my corner. Like whatever I opportunities for self-determination and responded
want to do they could support me. Motivate me, [get to the self-advocates’ self-determined acts seemed to
me] moving and get another job; encourage.’’ have a strong influence on the self-advocates’ ability
Phil and Dina spoke about staff members en- to carry out their will and their future expression of
couraging them to lose weight after they declared self-determination. The findings are discussed within
their interest by reminding them to practice portion the context of four overarching themes that sum-
control and motivating them to exercise. In another marize potential key influences of self-determination
example, Carly talked appreciatively about her sup- identified by the self-advocates.
port worker who encouraged her to make decisions Perhaps, one of the most important key in-
for herself. When shopping for clothing, her support fluences on self-determination identified by the
worker said, ‘‘don’t buy it to make me happy, what do participants was the quality of their interpersonal
you like?’’ relationships formed with support staff. Good rela-
A third form of support for follow through con- tionships seemed to create the context for all other
sisted of support staff assisting the self-advocates to supportive actions to follow. Self-advocates spoke
carry out tasks of daily living. When asked specifically, fondly about staff members whom they trusted and
‘‘what do staff do to help you be self-determined?’’ liked. Implicit in their discussion, liking and trust
several self-advocates talked about the many ways that was facilitated by support staff consistently acting
staff provided daily assistance, including assistance on the self-advocate’s behalf and interests. If self-
with taking medications, going to the bank, doing advocates viewed their relationship with support
laundry, going to the grocery store, cooking, and going staff as positive, they seemed open to staff support by
to doctor appointments. Carolyn, for example, talked initiating requests for assistance, sharing sensitive
about how support staff taught her to manage her information, and being receptive to staff members’
diabetes and give herself insulin shots. Support to guidance. Indeed, in some instances, the self-
participate in daily activities was viewed by the self- advocates seemed to relinquish control and accept
advocates as being relevant to their self-determination staff actions that can be construed as controlling
because these activities were important to them; staff (e.g., portion control) perhaps because of the trust
assistance helped the self-advocates exert control and that had been established. By contrast, self-advocates
pursue the things they wanted to do. This form of reported avoiding staff members whom they did not
support was extended to transportation and spending trust, sometimes at the expense of not pursuing their
336 ’American Association on Intellectual and Developmental DisabilitiesINTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 | OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
own interests or protecting their personal welfare. Brown et al., 1998; Turnbull & Turnbull, 2001;
In other words, the extent to which self-advocates Wetherow & Wetherow, 2003). Clearly, speaking
could express their self-determination and seek out or making choices is not enough. For individuals
assistance when needed seemed mediated by the with intellectual or other developmental dis-
quality of the interpersonal relationships formed abilities who need assistance, self-determination
with their supporters. This conclusion is consistent cannot be fully realized without the on-going sup-
with the findings of a small, but growing number port of others.
of studies that point to the quality of relationships It is interesting that, although making choices
as a key mediator in establishing effective supports is considered only one facet of self-determination
for individuals with developmental disabilities (e.g., (Wehmeyer, 2005), the self-advocates viewed hav-
Bambara, Gomez, Koger, Lohrmann-O’Rourke, & ing frequent opportunities for daily choice-making
Ping Xin, 2001; McLaughlin & Carr, 2005; Robledo & as an important source of support. Although, their
Donnellan, 2008). It is also consistent with Ryan emphasis on daily choice may have been fueled
and Deci’s (2000) self-determination theory posit- by their limited experiences with having control in
ing that self-determined behaviors are more likely their lives, it is possible that choice served an im-
to flourish in social contexts characterized by a portant function in their relationship with support
‘‘sense of security and relatedness’’ (p. 71) imparted by staff. That is, choice may have allowed self-advocates
others. to establish and maintain self-direction as they relin-
The second key influence identified by the quished some control for certain activities (e.g., find-
participants was the specific support strategies ing a job or apartment) to support staff. Choice
implemented by staff to encourage and respond provided a vehicle for shared decision-making be-
to their self-determination. As indicated by the tween self-advocates and their supporters.
self-advocates, supportive staff actions came in The third key influence of self-determination
several forms, such as encouraging them to try relates to how support staff exerted their power. Due
new things or to pursue their goals and interests, to personal limitations, people with intellectual dis-
listening to their wants and ideas without imposing ability are vulnerable to the control of others who do
judgment, providing support for decision-making not share the same limitations. In a positive vein, self-
by sharing information and problem-solving with advocates described numerous ways in which staff
them, and providing whatever assistance was needed used their power to support their self-determination,
(e.g., arranging transportation, helping with grocery such as sharing information or helping them to gain
shopping) in order for the self-advocates to carry out access to people in positions of authority. On the
their intentions and engage in activities that were other hand, supporters were described as abusing their
important to them. According to self-determination power sometimes through acts of coercion. Specifi-
theory as advanced by Deci and Ryan (1985), these cally, self-advocates talked frankly about staff mem-
staff actions can be classified as informational, those bers who manipulated a situation or a self-advocate’s
that support autonomy and promote competence, view of a situation in an effort to persuade self-
rather than controlling, those actions that force one advocates toward what staff thought was best.
to act or think differently. In their review of research Van Knippenberg, Van Knippenberg, and De
conducted with nondisabled populations, Deci, Cremer (2007) identified two driving forces behind
Connell, and Ryan (1989) concluded that informa- the use of coercive tactics by powerholders: compe-
tional actions support self-determination, whereas tence and reward structures. With regard to com-
controlling actions diminish it. petence, the use of coercive tactics by support staff
The contribution of the findings in the pres- may reflect traditionally held beliefs that people
ent study is that self-advocates provided specific with intellectual disability are incapable of making
examples of how support staff can facilitate their competent decisions (e.g., Bannerman, Sheldon,
self-determination in noncontrolling or informa- Sherman, & Harchik, 1990). With regard to reward
tional ways during daily interactions. As suggested by structures, staff workers may use coercive tactics to
many professionals, promoting self-determination manipulate situations for their own benefit, such as
requires that supporters understand the target per- making their jobs easier in some way. The primary
son’s frame of reference and willingly follow the implication is that in order for staff to fully adopt a
person’s lead and interests (Bambara et al., 1998; noncontrolling posture of support, they may need to
’American Association on Intellectual and Developmental Disabilities 337INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 | OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
become aware of their own motivations for their such varied living and work experiences, tracing
actions. their perspectives about staff support to specific
The fourth key influence relates to the settings contexts with any certainty is impossible.
in which the self-advocates lived and worked. Con- A second limitation is that in this study we
sistent with previous research (e.g., Stancliffe, 2001; focused only on perceptions. Although understand-
Wehmeyer & Palmer, 2003), the self-advocates’ ing the perspectives of adults with intellectual dis-
strongest voiced concerns about staff control (e.g., ability is vital to our understanding of meaningful
controlling money, usurping decision-making, fail- supports, perceptions alone do not reveal wheth-
ing to follow through) seemed largely associated with er reported staff actions actually influenced self-
congregate living or work settings. Staff actions determination. Direct observations of self-advocate
perceived as interfering with the self-advocates’ and support staff interactions could have provided
self-determination may be partly explained by the more corroborating evidence and yielded richer
policies and organizational structure of congregate descriptions of what supporters say and do to
settings that are imposed on staff (e.g., locking up promote or hinder self-determination.
money), including the inherent conflict of balancing In conclusion, by focusing in this study on the
individual support needs with group care. However, perspectives of adults with intellectual disability re-
unsupportive staff actions were not limited to con- garding the interpersonal or social supports needed
gregate settings. Self-advocates reported numerous to facilitate their self-determination, we provide a
instances in which support staff, and sometimes fam- unique contribution to the literature. This study
ily members and in one case an employer, usurped clearly documents that self-determination cannot be
their decision-making, failed to follow through on viewed outside of social contexts, especially for in-
requests, or pressured them into changing their dividuals with intellectual disability who must rely
minds in noncongregate environments. At the same on the assistance of others to carry out their will.
time, they gave positive examples of staff support Future researchers should continue to explore how
occurring in group settings as well. These findings all supporters, paid and unpaid, can best create inter-
suggest that the influences on self-determination personal contexts supportive of self-determination
are complex and cannot be explained by a single and how to change their orientation toward greater
variable (i.e., setting alone). In order to fully under- support of self-determination through training and
stand the influences of self-determination, greater development.
consideration must be given to multiple factors (e.g.,
setting, interpersonal, attitudinal) and the interac-
tion among them. References
The findings of this study should be interpreted Abery, B. H. (1994). A conceptual framework for
in light of two primary limitations. First, similar to enhancing self-determination. In M. F. Hayden
all qualitative studies, the findings are uniquely tied & B. H. Abery (Eds.), Challenges for service
to the participants’ experiences and should not be system in transition (pp. 345–380). Baltimore:
generally applied to other individuals. For instance, Brookes.
all participants were members of one of two self- Bambara, L. M., Cole, C. C., & Koger, F. (1998).
advocacy groups run by the same organization; Translating self-determination concepts into
therefore, their perspectives about the meaning of support for adults with severe disabilities. Journal
self-determination were likely shaped by their group of the Association for Persons with Severe Hand-
discussions. Similarly, the self-advocates’ perspec- icaps, 23, 27–37. doi:10.2511/rpsd.23.1.27
tives about staff actions that supported or impeded Bambara, L. M., Gomez, O., Koger, F., Lohrmann-
their self-determination were likely influenced by O’Rourke, S., & Ping Xin, Y. (2001). More
their present and past living and work situations than techniques: Team members’ perspectives
and the contrast among them. Most self-advocates on implementing positive supports for adults
experienced congregate living or work situations, with severe challenging behaviors. Journal of
or they lived with a host family paid to provide the Association for Persons with Severe Handi-
support. Thus, it is unclear whether other adults with caps, 26, 213–228. doi:10.2511/rpsd.26.4.213
intellectual disability who receive supported living Bannerman, D. J., Sheldon, J. B., Sherman, J. A., &
services in their own home would share similar Harchik, A. E. (1990). Balancing the right to
views. In addition, because the self-advocates had habilitation with the right to personal liberties:
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