"I'm Supposed to Be In Charge": Self-Advocates' Perspectives on Their Self-Determination Support Needs

Article (PDF Available)inIntellectual and Developmental Disabilities 49(5):327-40 · October 2011with54 Reads
DOI: 10.1352/1934-9556-49.5.327 · Source: PubMed
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.
‘‘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
to lead self-determined lives has been a salient focus
of both research and disability services for over
two decades (e.g., Policy Research Brief, 2009;
Wehmeyer, 2001). The construct of self-determination
carries multiple meanings. When defined from a per-
sonal and a psychological perspective, self-determination
is characterized as ‘‘volitional actions that enable
one to act as the primary causal agent in one’s life
and to maintain or improve one’s quality of life’’
(Wehmeyer, 2005, p. 117). From this perspective,
self-determination is viewed as a drive, motivation,
or trait. When the construct is applied to service
systems, self-determination is viewed as a right,
referring to the freedom, authority, support, and
responsibility needed for individuals to direct and
control their own services and budgets (Nerney,
2007). Despite the variation in meanings, a con-
sistent thread is that self-determination is about
people self-directing their lives in positive ways.
Arguably, self-determination is the hallmark
of adulthood and an essential attribute needed for
achieving a good, quality life (Lachapelle et al., 2005;
Wehmeyer & Palmer, 2003; Wehmeyer & Schwartz,
1998); but how does one come to express self-
determination? This is a salient question given a
strong consensus in the research literature that many
adults with intellectual disability do not live very self-
determined lives (Stancliffe, 2001; Wehmeyer, 2001).
In theory, individuals’ expression of self-determi-
nation is influenced positively or negatively by the
interaction between one’s personal characteristics
and environmental conditions (Abery, 1994; Field
& Hoffman, 1994; Wehmeyer & Garner, 2003).
Specifically, in describing the functional theory of
self-determination, Wehmeyer and Garner (2003) pro-
posed that (a) personal capacity, influenced by learning
history and personal development; (b) opportunity,
influenced by environment and experience; and (c)
supports or accommodations that enable people to
exercise self-direction all impact the expression of self-
determination. Although it may be tempting to focus
on personal limitations, environmental influences, in-
cluding related supports, may be the most relevant for
adults with intellectual disability. Research supports
this supposition. Several studies have shown that
adults with intellectual disability who live or work in
more congregate settings display lower levels of self-
determination than those who live or work in more
independentornonsegregatedenvironments(e.g.,Stan-
cliffe, Abery, & Smith, 2000; Wehmeyer & Palmer,
2003; Wehmeyer & Schwartz, 1998). Further, when
researchers controlled for personal characteristics, the
environment, and not intelligence, was found to be the
significantcontributortoself-determination,confirming
therelativeimportanceandimpactof thisvariableonthe
lives of adults with intellectual disability (Wehmeyer &
Bolding, 2001; Wehmeyer & Garner, 2003).
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 |OCTOBER 2011
American Association on Intellectual and Developmental Disabilities 327
Research on the environmental influences on
self-determination is emerging. Beyond understand-
ing the broad impact of congregate settings, very
little is known about specific environmental factors
that occur within and across settings that either
promote or hinder individuals’ expression of self-
determination. The setting itself may not be the
most influential variable, but, rather, the con-
ditions within settings that foster self-direction may
be the most relevant (Wehmeyer & Bolding, 2001).
The provision of choice is one variable that has
received considerable research attention, but a myr-
iad of other environmental factors, physical and
social, are likely to be influential (Stancliffe, 2001).
One potential environmental influence that has
received little research attention in relation to self-
determination is the quality and type of interpersonal
supports provided to individuals with intellectual
disability by their family, friends, or support staff.
Given certain cognitive and physical limitations,
many individuals with intellectual disability are not
likely to act completely autonomously but, rather,
require the on-going assistance of others to participate
in daily decision-making and to advocate for their
own preferences and needs (Thompson et al., 2009).
The extent to which supporters through their daily
personal interactions can help foster or hinder indivi-
duals’ expression of self-determination is especially
critical to our understanding as theoretically support-
ers create the conditions for self-determination.
Several authors have speculated about the character-
istics of interpersonal supports that may enhance self-
determination. These include establishing trusting
relationships (e.g., Kennedy, 1996), interpreting
and responding to nonverbal communication (e.g.,
Brown, Gothelf, Guess, & Lehr, 1998), and provid-
ing on-going encouragement for and assistance with
decision- making and other acts of self-direction (e.g.,
Bambara, Cole, & Koger, 1998; Lotan & Ellis; 2010);
however, these and other forms of interpersonal
supports on the expression of self-determination by
adults with intellectual disability have yet to be
systematically documented by researchers.
Central to this discussion on interpersonal sup-
ports is the attending to the voices of adults with
intellectual disability regarding the types of supports
they need or want. Rarely are the perspectives of
individuals with disability included in the research
literature in general (e.g., Robledo & Donnellan,
2008; Ruef & Turnbull, 2002; Stoner, Angell,
House, & Goins, 2006). With regard to published
research on self-determination, the involvement of
adults with intellectual disability has been largely
limited to measuring their level of self-determina-
tion, quality of life, or opportunities for choice and
control (e.g., Lachapelle et al., 2005; Stancliffe &
Wehmeyer, 1995; Wehmeyer & Palmer, 2003) rath-
er than assessing their perceived support needs. By
contrast, national initiatives, such as Self Advocates
Becoming Empowered (SABE: http://www.sabeusa.
org) and the Robert Wood Johnson Foundation
self-determination projects (Robert Wood Johnson
Foundation, 2007), have actively sought and encour-
aged adults with intellectual disability to speak-out
about the services and supports needed to enhance self-
determination. The resulting outcomes have broad-
ened our understanding of self-determination from the
perspectives of self-advocates (e.g., Bradley et al.,
2001); however, these initiatives have been focused on
broad systems and policy changes needed for
consumers to direct and control services rather than
to understand the influences of self-determination from
a personal perspective.
In a study related to the current investigation,
Stoner et al. (2006) interviewed adults with physical
disabilities regarding their perceptions about factors
that facilitated and impeded their self-determina-
tion. The participants described specific intrinsic
(e.g., personal fortitude, self-doubt) as well as extrin-
sic or environmental variables (e.g., support net-
works, physical accessibility) that influenced their
ability to be self-determined. Family support and
other social networks were identified as facilitators,
bringing into the spot light the importance of more
thoroughly investigating the nature of interpersonal
supports and their influence on self-determination.
Our purpose in this study, therefore, was to ex-
plore the perspectives of adults with intellectual dis-
ability regarding the interpersonal or social supports
needed to express their own self-determination.
Understanding the perspectives of adults with intel-
lectual disability regarding how to best encourage
their expression of self-determination is imperative
not only to develop meaningful supports that are
important to them, but also to target potential
environmental influences not previously explored by
researchers that may result in improved outcomes
for adults. Because support staff through community
disability services plays a major role in the support
of adults with intellectual disability, our focus was
on understanding staff actions that were perceived
to support or impede self-determination. Using a
qualitative approach to inquiry, we interviewed well-
informed adults to talk about their self-determination
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 |OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
328 American Association on Intellectual and Developmental Disabilities
and experiences with support staff. All participants
were members of a self-advocacy group and were
knowledgeable and conversant about the topic of
self-determination. In addition, at the time of the
study, the participants received staff supports in com-
munity settings. Specifically, we sought to answer the
following questions. How do the self-advocates with
intellectual disability define self-determination? What
staff actions do they perceive as supporting their self-
determination? Conversely, what staff actions do they
perceive as inhibiting their self-determination?
Method
Self-Advocate Selection and
Recruitment Procedures
Ten adult self-advocates with intellectual dis-
ability who were members of one of two self-advocacy
groups located in northeast Pennsylvania participat-
ed. To recruit participants, we asked mentors of the
self-advocacy groups who co-facilitated meetings with
group members to nominate individuals based on the
following inclusion criteria: (a) diagnosis of in-
tellectual disability as evidenced by the receipt of
disability services (e.g., Medicaid Waiver), (b) a min-
imum of 10 hours of staff support per week from a
community, residential, and/or employment service
provider, (c) conversational skills necessary to partic-
ipate in interviews, (d) conceptual understanding of
the construct of self-determination observed through
group discussions, (e) ability to articulate concerns
about events that affect them, and (f) an expressed
willingness to participate in the interviews.
All self-advocates nominated by the mentors par-
ticipated. To establish a relationship with the nomi-
nees and confirm that they understood the concept
of self-determination and had sufficient language skills
to respond to interview questions, the first author
attended monthly meetings with each group for 3 to
4 months prior to conducting individual interviews.
Attendance at meetings continued for an additional
3 months during and after the interviews to maintain
relationships.
Self-Advocates
Table 1 provides descriptive information for
each of the 10 self-advocates, including their age,
gender, and ethnicity and the participants’ present
(during the time of the interviews) and past
(within past 10 years) living and employment
situations for which they received staff support
through a disability service provider. As shown, the
self-advocates were 6 women and 4 men, ranging in
age from 24 to 56. With regard to present services, 7
self-advocates received staff support for residential
living only; 1 received support for employment only;
and 2 received staff support for both residential
living and employment. With regard to present
living situations most self-advocates lived in a 24-
hour group home or in a semi-independent living
situation that provided less than 30 hours of staff
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
provided for employment, 2 self-advocates worked
in a sheltered workshop. Outside of paid support, 1
self-advocate, Marie, lived with her family and 7
self-advocates were either competitively employed,
self-employed, or unemployed at the time of the
interviews.
Past living and employment situations also varied.
Some participants lived and worked in multiple situ-
ations within the past 10 years. Past living situations
that provided 10 hours or more of staff support in-
cluded family, semi-independent, and group home
living as well as institutional placement in an Inter-
mediate Care Facility. Past employment situations
providing paid staff support included sheltered work
and competitive community employment.
Data Sources and Procedures
We used one-on-one, in-depth semi-structured
interviews to explore the self-advocates’ experiences
and perspectives concerning their self-determination.
Interviewing individuals with intellectual disability
may pose a number of challenges associated with the
interviewees: (a) recalling experiences, (b) under-
standing and responding appropriately to open-
ended questions (particularly when questions exceed
their linguistic abilities), and (c) pleasing the inter-
viewer with responses that they believe the inter-
viewer or others want to hear (Biklen & Moseley,
1988; Finlay & Lyons, 2002). Interview procedures
were designed to address these challenges.
Following Seidman’s (1991) recommendations
for conducting a multiple interview series, we inter-
viewed each self-advocate twice. The first interview
encouraged free recall to open-ended questions and
general discussion about self-determination. In the
second interview we asked the self-advocates to
clarify their responses made in the first interview and
to detail their experiences by providing specific
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 |OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
American Association on Intellectual and Developmental Disabilities 329
examples. The two interviews were spaced less than
one month apart. Following a topical interview
guide, the first author conducted all interviews,
which ranged from 60 to 90 min.
The interview guide consisted of open-ended
questions, examples of alternatively worded questions
that were used in instances when a self-advocate
appeared to have difficulty comprehending a ques-
tion, and sample follow-up probes that encouraged
them to detail their responses. Before using the
interview guide, we asked members at one self-
advocacy group meeting to provide feedback on the
clarity of the questions and interview format outlined
in the guide. Their feedback was used to shape the
final protocol.
We organized the interview guide around four
broad categories. First, the self-advocates were
oriented to the purpose of the study and asked to
talk generally about themselves in an effort to build
rapport and reduce any uneasiness about partici-
pating in the interviews. To discourage interviewer-
pleasing statements, the interviewer stressed the
importance of speaking honestly. Self-advocates
were reminded periodically throughout each inter-
view that what they say would not be shared with
others (especially staff members) and that ‘‘I don’t
know’’ was an option for every question.
Second, we asked self-advocates to define the
meaning of the term self-determination (e.g., ‘‘What is
self-determination?’’ ‘‘Why is important?’’ ‘‘What
things do you do to be more self-determined?’’).
Third, we requested that they discuss their experi-
ences in which staff actions were viewed as
interfering with their ability to express their self-
determination (e.g., ‘‘Can you tell me a story of
when a staff person did something that got in your
way of being self-determined?’’ ‘‘What things have
you seen with other people with disabilities?’’).
Fourth, we asked self-advocates to describe their
perspectives about how staff members can help
support their self-determination (e.g., ‘‘Can you tell
me a story of when a staff person did something that
helped you be self-determined?’’). In addition to re-
phrasing questions to ensure comprehension, the
interviewer frequently summarized and paraphrased
the self-advocates’ responses to ensure that she
Table 1 Demographic Information
Name Age
Present staff
support
Residential experiences Employment experiences
Present Past Present Past
Jerry 49 Residential Semi-independent Personal family,
semi-independent
with roommate
Competitive Competitive
Mickey 56 Residential Group home Personal family Competitive,
volunteer
Workshop,
competitive
Bob 29 Residential Semi-independent Personal family,
group home
Competitive Competitive
Phil 53 Residential Group home Personal family,
institution
None Workshop
Joni 44 Residential Family living Personal family None Competitive
Carolyn 49 Residential Group home Family living,
semi-independent
None Workshop
Dina 49 Residential/
employment
Group home Personal family,
institution
Workshop Competitive
Marie 24 Employment Personal family Personal family Competitive,
volunteer
Competitive,
volunteer
Carly 46 Residential/
employment
Group home Personal family,
semi-independent
with roommate
Workshop Competitive
Note. All participants were Caucasian.
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 |OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
330 American Association on Intellectual and Developmental Disabilities
correctly understood their words and intended
meaning.
All self-advocates chose to be interviewed in
their homes in a private location. When given the
option of having a trusted person present for support
during the interviews, 3 elected to have their mentor
present. To reduce the possible influence of the
mentor’s presence on participant responses (Biklen
& Moseley, 1988), we asked the mentor not to
participate in the interviews but, rather, to inter-
pret hard-to-understand communication between
the interviewer and the self-advocate only when
asked. If the mentor offered an interpretation, the
interviewer asked the self-advocate to verify its
accuracy (e.g., ‘‘Judy said you were afraid. Is this
true?’’).
Data Analysis
A research team, consisting of the two authors
and a doctoral student in special education, con-
ducted the data analysis. All interviews were audio-
taped and transcribed verbatim by a professional
transcriptionist. The first author, responsible for the
interviews and the primary analysis, listened to the
tapes and corrected any inaccuracies in the tran-
scripts. Data analysis of the transcribed interviews
progressed in four stages, following a modified ver-
sion of the Consensual Qualitative Research proce-
dure developed by Hill, Thompson, and Williams
(1997).
First, we developed a set of domain codes to
categorize the participant responses into related top-
ic areas. The process involved two team members
reading through the first three sets of interview
transcripts, generating an initial start list of domain
codes based on participant responses, independently
applying the codes to the first set of transcripts, and
then coming to consensus on the categorization of
text, modifying or creating new codes as needed to
categorize all the data. This resulted in a start list of
20 domain codes that were then used to code the
remaining sets of transcripts.
Second, the primary coder applied the domain
codes across all the remaining transcripts, resulting in
the categorization of all text within the transcripts;
however, we maintained and used original transcripts
throughout all stages of data analysis to prevent
decontextualizing the self-advocates’ responses. Once
all transcripts were coded, a second team member
audited the categorized text; any disagreements with
the primary coder were resolved through consensual
agreement. As needed, we continuously modified
domain codes or created novel ones as new concepts
emerged from the interviews.
Third, we abstracted the content of each do-
main by preparing a succinct summary of each self-
advocate’s core ideas. The goal here was to reduce
the data in preparation for the cross analysis. A
second team member audited the abstracts and met
with the primary coder to come to consensus, making
sure that the wording of the abstracts was represen-
tative of the participant’s words and ideas.
Fourth, we conducted a cross analysis by com-
paring all abstracted domains across participants. All
cases within abstracted domains were analyzed to
determine similarities across participants and wheth-
er or not abstracted ideas could be further coded into
smaller subcategories. A final comprehensive anal-
ysis linking domains and subcategories into themes is
reported below in the Findings. The research team
reviewed the final themes to achieve consensus and
to confirm that the themes were grounded in the
data.
Member Check
To verify that themes reflected self-advocates’
experiences, we presented a summary of the findings
at two self-advocacy group meetings that were held
in different locations to elicit comments. At least 3
self-advocate participants were present at each
meeting. Specifically, we asked the group members
to comment on whether the themes and illustrative
examples were typical to their experiences and those
of others with intellectual disability. Both groups
indicated strong endorsement of the themes. Several
members responded by providing additional exam-
ples and telling their own personal stories. These
accounts were recorded in fieldnotes by the self-
advocacy mentor and were integrated into the
findings.
Findings
Here we describe how the self-advocates (a)
defined the meaning of self-determination and (b)
perceived staff actions to either impede or support
their ability to express their self-determination.
Definition of Self-Determination
Two themes seemed to capture the self-advocates’
understanding of the construct self-determination:
speaking out and being in charge.
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 |OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
American Association on Intellectual and Developmental Disabilities 331
1. ‘‘I’m my own advocate’’: Speaking out
When the self-advocates were asked, ‘‘How
do you describe self-determination,’’ they expressed
a common view that self-determination was about
speaking out on their own behalf about what they
wanted or did not want, and it was about making
their intentions heard. Jerry said that being able ‘‘to
talk about what I want’’ with others defined self-
determination for him. Similarly, Bob and Dina des-
cribed self-determination as knowing ‘‘your rights’’
and talking about ‘‘what you want.’’ Bob defined self-
determination by stating, ‘‘Self-determination to me
is how I moved out of a group home.’’ He explained
that when he learned from his caseworker that he
had the right to ‘‘not to live in a group home,’’ he
spoke out by making his desire to move known to his
support staff. Jerry stated that if he did not speak out
on his own behalf, ‘‘nobody else would do it for me.’’
2. ‘‘Being my own boss’’: Being in charge
In addition to speaking out, being ‘‘in charge,’’
or making and acting on decisions, also defined self-
determination for the self-advocates. Phil said that
when ‘‘the ball is in my court, I decide how things
should be done.’’ In particular, the self-advocates
shared many examples of being in charge through
daily choice-making, such as deciding what to do
during free time, choosing where to live or work,
determining what to do with personal spending
money, and choosing to have intimate relationships
with others. Joni said that choosing to have a
boyfriend and choosing what to do when she had free
time were ways that she was self-determined, while
Jerry stated that self-determination means, ‘‘Doing
what I want.’’ Another self-advocate participating in
one of the focus group meetings said that self-
determination ‘‘means doing things for myself and
reaching my goals.’’
Although the self-advocates emphasized being
in charge, 3 participants explicitly acknowledged
their need for support or assistance from others to
do so. Bob voiced that being self-determined meant
being ‘‘independent,’’ but if he needed, he knew
whom he could go to seek assistance ‘‘to be more
independent.’’ Jerry seemed to echo this sentiment
of being in charge while also securing help when
needed. He stated:
I want somebody to help me, yes, I ain’t saying that [I don’t want
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
self-advocate, the first thing I could do is speak up for myself—to
know what’s going on in my life.
Staff Actions
Ten themes characterized the self-advocates’ per-
ceptions about staff actions that influenced their abil-
ity to express their self-determination. These themes
are organized by staff actions that either impeded or
supported their acts of self-determination.
Actions Impeding Self-Determination:
1. ‘‘They’d boss me around’’: Usurping decision-
making and control
All but one self-advocate relayed numerous in-
stances in which their opportunities to express self-
determination were impeded when support staff
made decisions for them. Based on the self-advocates
examples, congregate and family living settings posed
the most restrictions. For instance, Bob stated that
when he lived in a group home, he and his room-
mates ‘‘[had] to do whatever staff says.’’ He ex-
plained, ‘‘They’d tell me what time to go to bed, what
time to eat, and wherever the staff go, we’d have to
go.’’ Dina, who lived in an institution, reported being
upset by having to eat dinner at three thirty in the
afternoon, expressing that it was ‘‘so early for supper’’
and that ‘‘people would be getting hungry’’ later
in the evening. Cass, who lived in a family living
situation, also spoke about the limited control she
had over her daily activities.
Staff control over decision-making extended be-
yond daily choices and often pre-empted opportuni-
ties for self-advocates to decide where to work and
live and with whom. After sharing an apartment
with a roommate without disabilities for years, Carly
explained that one day she was informed by a pro-
gram supervisor that her roommate no longer wanted
to live with her and that she would be placed in a
group home. Similarly, Phil reported that he moved
from an institution to his group home without being
presented with any options. Concerned about their
personal welfare, Carly and Marie angrily explained
that they and their friends were not given the choice
of selecting their own roommates and support staff.
Speaking about her friends, Marie said,
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
come in there? ‘‘NO,’’ we don’t want him working in the group
home, because he’s mean.
Two self-advocates also expressed dismay about
their support staff changing their employment with-
out consulting them. When Dina was asked what she
would have said if her caseworker had asked her
whether she wanted to change jobs, Dina stated, ‘‘I
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 |OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
332 American Association on Intellectual and Developmental Disabilities
would have said to her, no, I want to keep the job.’’
In summary, in sharp contrast to the self-advocates’
characterization of self-determination (i.e., speaking
out and being in charge), staff control over decision-
making was perceived as a major impediment to the
self-advocates’ expression of their self-determination.
2. ‘‘He used to hold my money’’: Controlling personal
spending
Staff control over personal spending money,
resulting in the self-advocates either not having
direct access their money or having to ask support
staff for daily spending money, was a significant
barrier to self-determination for 5 self-advocates.
They seemed to equate lack of control over their
money with lack of power or general control over
their lives. Phil reported that when he lived in
an institution, his money was locked in an office.
Mickey reported wanting to watch a truck pull
contest at a local fair, but when he asked his support
worker for money, the staff person refused by stating,
‘‘That’s not nice, that’s not for you.’’ Three other
self-advocates who lived in group homes had to ask
for their money when they wanted to buy something
and were not permitted to keep their money in their
personal possession.
3. ‘‘I can’t tell her I don’t like my job’’: Being
unapproachable or inaccessible
Although not a staff action per se, self-advocates
perceived unapproachable or at times inaccessible staff
persons as another impediment to self-determination.
Four self-advocates described situations in which they
simply did not feel comfortable confiding in their
support staff or seeking their assistance when needed.
Dina explained that when she lived in the institution,
she was pressured by another resident to have sex.
Although frightened by his advances, she was afraid to
speak out because it seemed as if ‘‘the staff didn’t care at
all.’’ She also feared that if she reported the situation,
her support staff would tell the resident’s sister, whom
Dina perceived as being mean. Similarly, Mickey
reported that although he did not like the hard work
and little money he made at the sheltered workshop,
he did not feel comfortable telling the workshop staff
that he wanted another job. One self-advocate who
participated in one of the focus groups seemed to offer a
partial explanation. He bluntly stated that he stopped
going to one support worker for help because the
worker failed to follow through with his requests.
Overall, discomfort or hesitancy with approaching
support staff for fear of staff not doing anything or
for fear of undesired repercussions seemed to have
inhibited the self-advocates’ drive to speak out.
The lack of accessible or available support staff
also posed a barrier. Marie and Joni reported that
when support staff were inaccessible or unavailable,
it was difficult for them to speak out about what they
wanted and carry out their intentions. When Marie’s
job coach abdicated his responsibility of doing
weekly follow-up checks, she expressed dismay that
she did not know whom she could to turn to and
discuss this issue. Joni expressed that when her group
home is understaffed, and only one staff person is
available, she is unable to leave the group home
and do the things that she wants to do without her
roommates.
4. ‘‘I told her I wanted a job, but I haven’t seemed to
get one yet’’: Failing to follow through
Based on their accounts, there were times when
the self-advocates clearly spoke out by making their
intentions and decisions known; however, staff failed
to follow through by providing timely and needed
supports to help the self-advocates carry out their
intentions, which posed another barrier to their
self-determination. Specifically, 6 self-advocates dis-
cussed situations in which support staff either pro-
crastinated or did nothing at all to assist them.
Several self-advocates reported instances in
which they informed support staff of their prefer-
ence for a new job or living situation, but had to
wait before staff took any noticeable action to assist
them. Mickey explained that his support staff did
not listen to him at first after he declared that he
wanted another job. Upset and unsure of why they
did not listen, Mickey reported that it took a long
time before his support staff finally helped him.
Similarly, Joni also reported that she told her staff
she wanted a job at Wal-Mart. She finally got the
job she wanted, but emphasized that ‘‘it took a
while.’’ Jerry declared that it took his support staff a
long time to ‘‘hear’’ that he wanted a new place to
live. When a new apartment was found, he said, ‘‘It
was like a hurricane, like one, two, three and I’m in
there. I didn’t know what really hit me. I still got a
lot of stuff missing.’’
Other self-advocates wondered whether some
staff persons listened to them at all. Phil recounted
a time when he approached his staff about getting a
job. When asked if he thought his support staff
listened to him, he stated sarcastically, ‘‘I haven’t
seemed to get one yet.’’ Carolyn stated that the
reason that she was no longer interested in pursuing
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 |OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
American Association on Intellectual and Developmental Disabilities 333
a job was that her support staff did nothing to help
her, despite the fact that she clearly made her
desires known.
Four self-advocates talked about the lack of staff
support around transportation. Living in rural areas
with limited public transportation, Joni, Cass, Dina,
and Carly relied on their support staff to take them to
work or to desired community places and activities,
yet the lack of staff assistance posed problems for
them. Cass said that her family living provider
declared that he was ‘‘too busy’’ to take her to self-
advocacy meetings. Joni mentioned that she liked
her job at Wal Mart ‘‘’till there was no buses; then I
could not do the job.’’ One self-advocate who
participated in a focus group explained that her
desire to do something was constantly dictated by the
availability and willingness of her staff to provide
transportation, not when she wanted or needed to do
something. These self advocates viewed transporta-
tion as means to their self-determination, and if staff
could or did not provide transportation, the self-
advocates were either left to find alternative methods
or were left being unable to pursue their interests.
5. ‘‘She said if I moved out she wasn’t going to talk to
me anymore’’: Obstructing and coercing
Six self-advocates spoke candidly about an-
other way that support staff impeded their self-
determination. This came in the form of obstructing
or vetoing the self-advocates’ decisions, sometimes
through acts of coercion or manipulation. Mickey
explained that he told both his mother and his
staff worker that he no longer wanted to work in a
workshop, but was informed by both that he ‘‘had to
stay,’’ totally disregarding his choice.
Four self-advocates spoke about staff manipu-
lating the self-advocates’ view of a situation in an
effort to persuade them to do what staff members
thought was best. Jerry talked to his caseworker
about wanting to move to his own apartment, but
reported that, ‘‘they told me to wait until the end of
July; now they’re trying to talk me out of it.’’ Bob
explained that when he told his group home staff
that he was ‘‘ready’’ to move out, they responded,
‘‘no, you’re not.’’ Similarly, when he told his boss
and job coach that he ‘‘doesn’t want to be doing
dishes the rest of life,’’ Bob’s boss responded that he
was ‘‘the best dish washer ever.’’
Carolyn said that her family living provider
threatened her to change her mind about moving
out. Carolyn reported that when she told the woman
about wanting to move, the woman responded by
saying ‘‘if you move out [she] wasn’t going to talk to
[Carolyn] anymore.’’ Taken together, these examples
of coercion (purposeful or not) suggest that support
staff, or others in position of authority, may at times
distort facts, make false statements, or use their
position of power to impose their views or persuade
self-advocates to change their decisions.
Actions Supporting Self-Determination:
By contrast, five themes emerged that character-
ized the self-advocates’ descriptions of staff actions
that supported their self-determination.
1. ‘‘They point me in the right direction when I need
it’’: Expanding options and experiences to encour-
age choice
Nine self-advocates spoke positively about sup-
port staff who encouraged them to initiate choice-
making by presenting options and exposing them to
new experiences. Phil, for example, reported that his
support staff helped him to find a new job, by
describing to him ‘‘what’s out there’’ and asking him
if he would like to learn more about available jobs in
his community. Three self-advocates spoke fondly
about a support program that provided a monthly
recreation calendar in which activities and events in
their area were listed. Joni talked about how the
calendar made her think about new activities that
she wanted to try. Dina revealed how experiencing
an option helped her to make a decision to move
from a large congregate care facility. Although she
admitted that she did not like living there, she
explained that she would have never considered
moving out until her caseworker suggested she try
living in a group home on a trial basis.
Three self-advocates described specific examples
of staff providing them with opportunities to make
frequent, daily choices in their homes, speaking at
length about support staff providing them with
options for meals. They expressed that even though
support staff took primary responsibility for cooking
meals, they welcomed opportunities to make meal
selections or choose something else to eat when they
did not like what was being served. Although these
choice opportunities seemed minor in comparison to
making decisions about employment and living
situations, they were nonetheless important to these
self-advocates.
2. ‘‘I could go to somebody higher up’’: Supporting
access to people of authority
Eight self-advocates expressed that their self-
determination was supported when they were able
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 |OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
334 American Association on Intellectual and Developmental Disabilities
to access people of authority above their direct
support staff who could make things happen for
them. Based on the self-advocates’ accounts, the
role of support staff was to either educate the self-
advocates about whom to go to for help or to assist
the self-advocates to make connections with people
in power. At least, supportive staff members did not
appear to stand in their way. For example, Dina
stated that if she had an issue with a staff person
telling her when she should go to bed, she knew she
could ‘‘go to somebody higher up’’ to express that
she ‘‘should’’ be able to stay up later. Similarly
Carly, who was required to have 24 hours of staff
support because of balance problems, planned to
talk to the ‘‘big bosses’’ (i.e., residential program
directors) at her annual planning meeting about her
desire to have time alone with her boyfriend. She
stated emphatically, ‘‘We’ll talk about it at my
meeting.’’ Cass posed this question to one of her
support workers, ‘‘What can I do if I had a problem
with somebody [staff person] and I didn’t know who
to go to? Or, can I come to you to talk? Being
supported to have access to people of authority
seemed to have provided the self-advocates with
a way to resolve issues that either involved their
support staff or issues that their support staff could
not address themselves.
3. ‘‘I feel comfortable with her’’: Being approachable
and accessible
Ways in which support staff fostered the self-
advocates’ expression of self-determination seemed
rooted in the relationships formed between support
staff and the self-advocates. An overarching premise
expressed by 8 self-advocates was feeling comfortable
enough with their support staff in order to approach
them for help and accept their guidance when
needed. Both Carly and Dina talked about liking
certain staff persons and being able to tell them
anything. Carly explained, ‘‘It’s important to me if
you like your staff. You could talk to her about more,
you could open up to them.’’ Dina indicated that
staff persons who are ‘‘nice and don’t boss her
around’’ are the ones that she goes to if she needs
help in making decisions.
In addition to being liked, approachable staff
persons were the ones the self-advocates trusted.
Dina made specific mention of trusting a staff person
to the point of accepting her recommendations; she
explained that she took her staff person’s advice
to change her job without trying it first because
she ‘‘trusted her.’’ Similarly, Carly explained that
because of her relationship with her support staff
(one with whom ‘‘she is able to kid around with’’),
she is ‘‘fine’’ when her support staff makes sugges-
tions for buying new clothes. Positive relationships
built on trust and comfort seemed to foster the self-
advocates willingness to accept guidance and foster
their initiative to speak out.
4. ‘‘I will have the staff sit down … and I will sort out
the choices’’: Listening without judgment
Five self-advocates reported that their self-
determination was supported when support staff
‘‘really listened’’ to them whenthey spoke out, rather
than dismissing or ignoring their assertions. Implicit
in their discussions, listening seemed to mean that
support staff took the time to understand the self-
advocates’ point of view, offered assistance when
they could, and refrained from imposing judgment or
their own position on the self-advocates’ decisions.
Carolyn, for instance, shared many examples
about the choices she made, which included wanting
to live in town, not wanting to work (especially not
in a workshop), going to bed early, and not wanting
to be part of a community club hosted by her
residential provider. Through these stories, Carolyn
conveyed that support staff respected her recreation-
al, employment, and residential decisions because
they did not attempt to change her mind. Phil was
appreciative that when he and his friend approached
his group home staff and the residential director
about wanting to change group homes, his staff and
program director did not question his decision or
‘‘give their two cents’’ trying to persuade him dif-
ferently. Rather, he explained, they all sat down
together to devise a plan to move.
Three self-advocates acknowledged that there
were times when support staff could not honor their
requests or help them to act on their decisions.
Rather than doing nothing or ignoring their requests,
the self-advocates appreciated support staff who
explained honestly why they could not help. Phil ex-
plained that he usually talks to the program director
if he has an issue because she listens; but, he also
understands that she ‘‘tells [him] what she can and
can’t do.’’
5. ‘‘Have staff in my corner, whatever I want to do,
they will help me’’: Providing support for follow
through
Lastly, and perhaps in the most obvious way, the
self-advocates indicated that their self-determination
was upheld when support staff provided needed assis-
tance to help them carry out or refine their decisions
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 |OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
American Association on Intellectual and Developmental Disabilities 335
once they had spoken out. Based on the self-advocates’
accounts, support for follow through took on various
forms. First, 7 self-advocates spoke about support staff
sitting down with them to problem solve and plan a
course of action. The key was not for staff to impose
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-
advocates spoke about telling their support staff that
they wanted a new job, and how they felt sup-
ported when staff assisted them by looking through job
ads and describing available options. Similarly, Bob
explained that when he declared that he wanted to
move to a place of his own, his support staff helped
him make decisions by explaining his financial situ-
ation, looking at the classifieds together, and providing
him with several apartment options to consider.
A second form of support for follow through was
when staff members encouraged or motivatedthe self-
advocates to pursue their decisions and goals, Jerry
spoke appreciatively about staff members motivating
him on ‘‘days when he didn’t want to do things.’’
When asked what motivating meant to him, Jerry
replied, ‘‘To have them in my corner. Like whatever I
want to do they could support me. Motivate me, [get
me] moving and get another job; encourage.’
Phil and Dina spoke about staff members en-
couraging them to lose weight after they declared
their interest by reminding them to practice portion
control and motivating them to exercise. In another
example, Carly talked appreciatively about her sup-
port worker who encouraged her to make decisions
for herself. When shopping for clothing, her support
worker said, ‘‘don’t buy it to make me happy, what do
you like?’’
A third form of support for follow through con-
sisted of support staff assisting the self-advocates to
carry out tasks of daily living. When asked specifically,
‘‘what do staff do to help you be self-determined?’’
several self-advocates talked about the many ways that
staff provided daily assistance, including assistance
with taking medications, going to the bank, doing
laundry, going to the grocery store, cooking, and going
to doctor appointments. Carolyn, for example, talked
about how support staff taught her to manage her
diabetes and give herself insulin shots. Support to
participate in daily activities was viewed by the self-
advocates as being relevant to their self-determination
because these activities were important to them; staff
assistance helped the self-advocates exert control and
pursue the things they wanted to do. This form of
support was extended to transportation and spending
as well. Several self-advocates gave examples of their
self-determination being supported when staff made
alternative arrangements for transportation or helped
them manage, as opposed to controlling, their budgets
and spending.
Discussion
In this study we explored the perceptions of self-
advocates with intellectual disability regarding their
understanding of the construct of self-determination
and the ways in which support staff have either
facilitated or hindered their self-determination. Con-
sistent with the views of other self-advocates des-
cribed in national reports (e.g., Bradley et al., 2001),
the participants described self-determination in terms
of speaking out for themselves, being in charge,
making decisions, and having control over the things
they want. Yet, at the same time, they seemed keenly
aware of their personal limitations and restrictions
imposed on them by their living and work situations
and, as such, turned to support staff or others for
assistance. The ways in which support staff created
opportunities for self-determination and responded
to the self-advocates’ self-determined acts seemed to
have a strong influence on the self-advocates’ ability
to carry out their will and their future expression of
self-determination. The findings are discussed within
the context of four overarching themes that sum-
marize potential key influences of self-determination
identified by the self-advocates.
Perhaps, one of the most important key in-
fluences on self-determination identified by the
participants was the quality of their interpersonal
relationships formed with support staff. Good rela-
tionships seemed to create the context for all other
supportive actions to follow. Self-advocates spoke
fondly about staff members whom they trusted and
liked. Implicit in their discussion, liking and trust
was facilitated by support staff consistently acting
on the self-advocate’s behalf and interests. If self-
advocates viewed their relationship with support
staff as positive, they seemed open to staff support by
initiating requests for assistance, sharing sensitive
information, and being receptive to staff members’
guidance. Indeed, in some instances, the self-
advocates seemed to relinquish control and accept
staff actions that can be construed as controlling
(e.g., portion control) perhaps because of the trust
that had been established. By contrast, self-advocates
reported avoiding staff members whom they did not
trust, sometimes at the expense of not pursuing their
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 |OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
336 American Association on Intellectual and Developmental Disabilities
own interests or protecting their personal welfare.
In other words, the extent to which self-advocates
could express their self-determination and seek
assistance when needed seemed mediated by the
quality of the interpersonal relationships formed
with their supporters. This conclusion is consistent
with the findings of a small, but growing number
of studies that point to the quality of relationships
as a key mediator in establishing effective supports
for individuals with developmental disabilities (e.g.,
Bambara, Gomez, Koger, Lohrmann-O’Rourke, &
Ping Xin, 2001; McLaughlin & Carr, 2005; Robledo &
Donnellan, 2008). It is also consistent with Ryan
and Deci’s (2000) self-determination theory posit-
ing that self-determined behaviors are more likely
to flourish in social contexts characterized by a
‘‘sense of security and relatedness’’ (p. 71) imparted by
others.
The second key influence identified by the
participants was the specific support strategies
implemented by staff to encourage and respond
to their self-determination. As indicated by the
self-advocates, supportive staff actions came in
several forms, such as encouraging them to try
new things or to pursue their goals and interests,
listening to their wants and ideas without imposing
judgment, providing support for decision-making
by sharing information and problem-solving with
them, and providing whatever assistance was needed
(e.g., arranging transportation, helping with grocery
shopping) in order for the self-advocates to carry out
their intentions and engage in activities that were
important to them. According to self-determination
theory as advanced by Deci and Ryan (1985), these
staff actions can be classified as informational, those
that support autonomy and promote competence,
rather than controlling, those actions that force one
to act or think differently. In their review of research
conducted with nondisabled populations, Deci,
Connell, and Ryan (1989) concluded that informa-
tional actions support self-determination, whereas
controlling actions diminish it.
The contribution of the findings in the pres-
ent study is that self-advocates provided specific
examples of how support staff can facilitate their
self-determination in noncontrolling or informa-
tional ways during daily interactions. As suggested by
many professionals, promoting self-determination
requires that supporters understand the target per-
son’s frame of reference and willingly follow the
person’s lead and interests (Bambara et al., 1998;
Brown et al., 1998; Turnbull & Turnbull, 2001;
Wetherow & Wetherow, 2003). Clearly, speaking
out or making choices is not enough. For individuals
with intellectual or other developmental dis-
abilities who need assistance, self-determination
cannot be fully realized without the on-going sup-
port of others.
It is interesting that, although making choices
is considered only one facet of self-determination
(Wehmeyer, 2005), the self-advocates viewed hav-
ing frequent opportunities for daily choice-making
as an important source of support. Although, their
emphasis on daily choice may have been fueled
by their limited experiences with having control in
their lives, it is possible that choice served an im-
portant function in their relationship with support
staff. That is, choice may have allowed self-advocates
to establish and maintain self-direction as they relin-
quished some control for certain activities (e.g., find-
ing a job or apartment) to support staff. Choice
provided a vehicle for shared decision-making be-
tween self-advocates and their supporters.
The third key influence of self-determination
relates to how support staff exerted their power. Due
to personal limitations, people with intellectual dis-
ability are vulnerable to the control of others who do
not share the same limitations. In a positive vein, self-
advocates described numerous ways in which staff
used their power to support their self-determination,
such as sharing information or helping them to gain
access to people in positions of authority. On the
other hand, supporters were described as abusing their
power sometimes through acts of coercion. Specifi-
cally, self-advocates talked frankly about staff mem-
bers who manipulated a situation or a self-advocate’s
view of a situation in an effort to persuade self-
advocates toward what staff thought was best.
Van Knippenberg, Van Knippenberg, and De
Cremer (2007) identified two driving forces behind
the use of coercive tactics by powerholders: compe-
tence and reward structures. With regard to com-
petence, the use of coercive tactics by support staff
may reflect traditionally held beliefs that people
with intellectual disability are incapable of making
competent decisions (e.g., Bannerman, Sheldon,
Sherman, & Harchik, 1990). With regard to reward
structures, staff workers may use coercive tactics to
manipulate situations for their own benefit, such as
making their jobs easier in some way. The primary
implication is that in order for staff to fully adopt a
noncontrolling posture of support, they may need to
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 |OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
American Association on Intellectual and Developmental Disabilities 337
become aware of their own motivations for their
actions.
The fourth key influence relates to the settings
in which the self-advocates lived and worked. Con-
sistent with previous research (e.g., Stancliffe, 2001;
Wehmeyer & Palmer, 2003), the self-advocates’
strongest voiced concerns about staff control (e.g.,
controlling money, usurping decision-making, fail-
ing to follow through) seemed largely associated with
congregate living or work settings. Staff actions
perceived as interfering with the self-advocates’
self-determination may be partly explained by the
policies and organizational structure of congregate
settings that are imposed on staff (e.g., locking up
money), including the inherent conflict of balancing
individual support needs with group care. However,
unsupportive staff actions were not limited to con-
gregate settings. Self-advocates reported numerous
instances in which support staff, and sometimes fam-
ily members and in one case an employer, usurped
their decision-making, failed to follow through on
requests, or pressured them into changing their
minds in noncongregate environments. At the same
time, they gave positive examples of staff support
occurring in group settings as well. These findings
suggest that the influences on self-determination
are complex and cannot be explained by a single
variable (i.e., setting alone). In order to fully under-
stand the influences of self-determination, greater
consideration must be given to multiple factors (e.g.,
setting, interpersonal, attitudinal) and the interac-
tion among them.
The findings of this study should be interpreted
in light of two primary limitations. First, similar to
all qualitative studies, the findings are uniquely tied
to the participants’ experiences and should not be
generally applied to other individuals. For instance,
all participants were members of one of two self-
advocacy groups run by the same organization;
therefore, their perspectives about the meaning of
self-determination were likely shaped by their group
discussions. Similarly, the self-advocates’ perspec-
tives about staff actions that supported or impeded
their self-determination were likely influenced by
their present and past living and work situations
and the contrast among them. Most self-advocates
experienced congregate living or work situations,
or they lived with a host family paid to provide
support. Thus, it is unclear whether other adults with
intellectual disability who receive supported living
services in their own home would share similar
views. In addition, because the self-advocates had
such varied living and work experiences, tracing
their perspectives about staff support to specific
contexts with any certainty is impossible.
A second limitation is that in this study we
focused only on perceptions. Although understand-
ing the perspectives of adults with intellectual dis-
ability is vital to our understanding of meaningful
supports, perceptions alone do not reveal wheth-
er reported staff actions actually influenced self-
determination. Direct observations of self-advocate
and support staff interactions could have provided
more corroborating evidence and yielded richer
descriptions of what supporters say and do to
promote or hinder self-determination.
In conclusion, by focusing in this study on the
perspectives of adults with intellectual disability re-
garding the interpersonal or social supports needed
to facilitate their self-determination, we provide a
unique contribution to the literature. This study
clearly documents that self-determination cannot be
viewed outside of social contexts, especially for in-
dividuals with intellectual disability who must rely
on the assistance of others to carry out their will.
Future researchers should continue to explore how
all supporters, paid and unpaid, can best create inter-
personal contexts supportive of self-determination
and how to change their orientation toward greater
support of self-determination through training and
development.
References
Abery, B. H. (1994). A conceptual framework for
enhancing self-determination. In M. F. Hayden
& B. H. Abery (Eds.), Challenges for service
system in transition (pp. 345–380). Baltimore:
Brookes.
Bambara, L. M., Cole, C. C., & Koger, F. (1998).
Translating self-determination concepts into
support for adults with severe disabilities. Journal
of the Association for Persons with Severe Hand-
icaps, 23, 27–37. doi:10.2511/rpsd.23.1.27
Bambara, L. M., Gomez, O., Koger, F., Lohrmann-
O’Rourke, S., & Ping Xin, Y. (2001). More
than techniques: Team members’ perspectives
on implementing positive supports for adults
with severe challenging behaviors. Journal of
the Association for Persons with Severe Handi-
caps, 26, 213–228. doi:10.2511/rpsd.26.4.213
Bannerman, D. J., Sheldon, J. B., Sherman, J. A., &
Harchik, A. E. (1990). Balancing the right to
habilitation with the right to personal liberties:
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 |OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
338 American Association on Intellectual and Developmental Disabilities
The rights of people with developmental
disabilities to eat too many doughnuts and
take a nap. Journal of Applied Behavior Analysis,
23, 79–89. doi:10.1901/jaba.1990.23–79
Biklen, S. K., & Moseley, C. R. (1988). ‘‘Are you
retarded?’’ ‘‘No, I’m Catholic’’: Qualitative
methods in the study of people with severe
handicaps. Journal of the Association for Persons
with Severe Handicaps, 13, 155–162.
Bradley, V. G., Agosta, J. M., Smith, G., Taub, S.,
Ashbaugh, J., Silver, J., & Heaviland, M.
(2001). The Robert Wood Johnson Foundation
self-determination initiative: Final impact assess-
ment report. Cambridge, MA: Human Services
Research Institute.
Brown, F., Gothelf, C. R., Guess, D., & Lehr, D. H.
(1998). Self-determination for individuals with
the most severe disabilities: Moving beyond
chimera. Journal of the Association for Persons
with Severe Handicaps, 23, 17–26. doi:10.2511/
rpsd.23.1.17
Deci, E. L., Connell, J., & Ryan, R. (1989). Self-
determination in a work organization. Journal of
Applied Psychology, 74, 580–590. doi:10.1037/
0021–9010.74.4.580
Deci, E. L., & Ryan, R. M. (1985). Intrinsic motivation
and self-determination in human behavior. New
York: Plenum Press.
Field, S., & Hoffman, A. (1994). Development of a
model for self-determination. Career Develop-
ment of Exceptional Individuals, 17, 159–169.
Finlay, W. M. L., & Lyons, E. (2002). Acquiescence in
interviews with people who have mental retarda-
tion. Mental Retardation, 40, 14–29.
Hill, C. E., Thompson, B. J., & Williams, N. E.
(1997). A guide to conducting consensual qual-
itative research. The Counseling Psychologist, 25,
517–572.
Implementation of consumer-directed services for
persons with intellectual or developmental disabil-
ities: A national study. (2009, January). Policy
Research Brief, 20(1). Institute on Community
Integrations, University of Minnesota. Re-
trieved from http://ici.umn.edu/products/prb/
201/default.html
Kennedy, M. J. (1996). Self-determination and
trust. In D. J. Sands & M. L. Wehmeyer (Eds.),
Self-determination across the life span: Indepen-
dence and choice for people with disabilities
(pp. 37–49). Baltimore: Brookes.
Lachapelle, Y., Wehmeyer, M. L., Haelewyck, M. C.,
Courbois, Y., Keith, K. D., & Schalock, R.
(2005). The relationship between quality of life
and self-determination: An international study.
Journal of Intellectual Disability Research, 49, 740–
744. doi:10.1111/j.1365–2788.2005.00743.x
Lotan, G., & Ells, C. (2010). Adults with intellectual
and developmental disabilities and participation
in decision making: Ethical considerations for
professional–client practice. Intellectual and De-
velopmental Disabilities, 48, 112–125. doi:10.1352/
1934–9556–48.2.112
McLaughlin, D. M., & Carr, E. G. (2005). Quality of
rapport as a setting event for problem behavior:
Assessment and intervention. Journal of Positive
Behavior Interventions, 7, 68–91. doi:10.1177/
10983007050070020401
Nerney, T. (2007). The meaning of self-determined lives in
publicly funded systems of long-term care. Retrieved
from http://www.centerforself-determination.com/
new.html
Robert Wood Johnson Foundation. (2007). Self-
determination for people with developmental disabil-
ities: Grant results. Retrieved from http://www.
rwjf.org/pr/product.jsp?id517885
Robledo, J. A., & Donnellan, A. M. (2008). Properties
of supportive relationships from the perspective
of academically successful individuals with au-
tism. Intellectual and Developmental Disabilities, 46,
299–310. doi:10.1352/1934–9556(2008)46[299:
POSRFT]2.0.CO;2
Ruef, M. B., & Turnbull, A. P. (2002). The
perspectives of individuals with cognitive dis-
abilities and/or autism on their lives and their
problem behavior. Research and Practice for
Persons with Severe Disabilities, 27, 125–140.
Ryan, R. M., & Deci, E.L. (2000). Self-determination
theory and the facilitation of intrinsic moti-
vation, social development, and well-being.
American Psychologist, 55, 68–78. doi:10.1037/
0003–066X.55.1.68
Seidman, I. E. (1991). Interviewing as qualitative
research: A guide for researchers in education and
the social sciences. New York: Teachers College
Press.
Stancliffe, R. J. (2001). Living with support in the
community: Predictors of choice and self-
determination. Mental Retardation and Develop-
mental Disabilities Research Reviews, 7, 91–98.
doi:10.1002/mrdd.1013
Stancliffe, R., Abery, B., & Smith, J. (2000). Personal
control and the ecology of community living
settings: Beyond living-unit size and type. Amer-
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 |OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
American Association on Intellectual and Developmental Disabilities 339
ican Journal on Mental Retardation, 105, 431–
454.
Stancliffe, R. J., & Wehmeyer, M. L. (1995). Varia-
bility in the availability of choice to adults with
mental retardation. Journal of Vocational Reha-
bilitation, 5, 319–328.
Stoner, J., Angell, M. E., House, J. J., & Goins, K.
(2006). Self-determination: Hearing the voices of
adults with physical disabilities. Physical Disabili-
ties: Education and Related Services, 25, 3–35.
Thompson, J. R., Bradley, V. J., Buntinx, W. H. E.,
Schalock, R. L., Shogren, K. A., Snell, M. E.,
et al. (2009). Conceptualizing supports and the
support needs of people with intellectual dis-
ability. Intellectual and Developmental Disabilities,
47, 135–142. doi:10.1352/1934–9556–47.2.135
Turnbull, A., & Turnbull, R.(2001). Self-determination
for individuals with significant cognitive disabil-
ities and their families. Journal of the Association
for Persons with Severe Handicaps, 26, 56–62.
doi:10.2511/rpsd.26.1.56
Van Knippenberg, B., Van Knippenberg, D., &
De Cremer, D. (2007). Why people resort to
coercion: The role of utility and legitimacy.
European Journal of Social Psychology, 37, 276–
287. doi:10.1002/ejsp.362
Wehmeyer, M. (2001). Self-determination and
mental retardation. In M. L. Glidden (Ed.),
International review of research in mental retarda-
tion (Vol. 24, pp. 1–48). San Diego: Academic
Press.
Wehmeyer, M. L. (2005). Self-determination and
individuals with severe disabilities: Re-examining
meanings and misinterpretations. Research and
Practice for Persons with Severe Disabilities, 30,
113–120.
Wehmeyer, M. L., & Bolding, N. (2001). Enhanced
self-determination of adults with intellectual dis-
ability as an outcome of moving to community-
based work or living environments. Journal
of Intellectual Disability Research, 45, 371–383.
doi:10.1046/j.1365–2788.2001.00342.x
Wehmeyer, M. L., & Garner, N. W. (2003). The
impact of personal characteristics of people
with intellectual and developmental disability
on self-determination and autonomous func-
tioning. Journal of Applied Research in Intellec-
tual Disabilities, 16, 255–265. doi:10.1046/j.
1468–3148.2003.00161.x
Wehmeyer, M. L., & Palmer, S. B. (2003). Adult
outcomes for students with cognitive disabilities
three-years after high school: The impact of self-
determination. Education and Training in Mental
Retardation and Developmental Disabilities, 38,
131–144.
Wehmeyer, M. L., & Schwartz, M. (1998). The
relationship between self-determination and
quality of life for adults with mental retardation.
Education and Training in Mental Retardation and
Developmental Disabilities, 33, 3–12.
Wetherow, D., & Wetherow, F. (2003). Supporting
self-determination with integrity. TASH Con-
nections, 29, 28–30.
Received 1/29/10, first decision 10/3/10, accepted 11/
15/10.
Editor-in-Charge: Steven J. Taylor
This study was conducted in fulfillment of the first
author’s dissertation requirements at the Department of
Education and Human Services, Lehigh University,
Bethlehem, PA, under supervision of the second author.
We are grateful to the self-advocates who were brave
and willing to share their experiences, not only for this
study, but throughout their daily lives.
Authors:
Stacy L. Nonnemacher,PhD, Senior Clinical
Consultant, Bureau of Autism Services, Pennsylva-
nia Department of Public Welfare; correspondence
address: HCR 1 Box 155, Neola Rd., Sciota, PA
18354. Linda M. Bambara, EdD (e-mail: lmb1@
lehigh.edu), Professor, Lehigh University, College
of Education, Bethlehem, PA 18015.
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 327–340 |OCTOBER 2011
Self-advocates’ perspectives on self-determination S. L. Nonnemacher and L. M. Bambara
340 American Association on Intellectual and Developmental Disabilities
    • "While Self- Advocacy can produce deeper senses of community, culture, identity formation, and disability pride (Caldwell, 2011; Carlson, 2010; Spassiani and Friedman, 2014), it is also noted for its liberatory potential because it directly challenges deficit-based understandings of IDD by continually pushing for self-determination. While there are various definitions of self-determination, self-advocates define self-determination as making themselves heard about their wants and needs, including both daily decisions and larger goals (Nonnemacher and Bambara, 2011). Interdependence is a core aspect of self-determination for people with IDD because they often rely on other people in their lives to provide support so they can enact their self-determination (Wehmeyer, 1998). "
    [Show abstract] [Hide abstract] ABSTRACT: People with intellectual and developmental disabilities must often advocate for themselves in many facets of life, including sexuality. Because of this, sexual self-advocacy is an important concept to develop and apply to policy and practice. This paper provides a conceptualization of sexual self-advocacy, a view of sexuality formulated by adults with intellectual and developmental disabilities that is closely tied to the values of the Self-Advocacy Movement. In describing the study process, this paper also puts forth the Participatory Action Research method, Nominal Group Technique, as an accessible method for gaining insight from adults with intellectual and developmental disabilities. The choice of Nominal Group Technique as a research method was motivated by several factors. Nominal Group Technique served to counterbalance many of the potential research difficulties when working with people with intellectual and developmental disabilities, including the need for understandable, inclusive, and participatory ways to access data from people with intellectual and developmental disabilities, and addressed the topic of sexual self-advocacy that is important to people with intellectual and developmental disabilities.
    Article · Jun 2015
  • [Show abstract] [Hide abstract] ABSTRACT: Abstract This paper presents findings from a qualitative research project on an English self-advocacy organization. In light of recent political and economic developments that have threatened the sustainability of a number of self-advocacy groups for people with intellectual disability, I seek to explore how one particular organization managed to survive and grow. In particular, the paper explores themes of management, leadership, and user control, linking these to external perceptions about self-advocacy organizations. The organization in my study developed an "interdependent" governance model based on key organizational roles for nondisabled advisors and self-advocates, which proved popular with external funders. Despite the organization's notable achievements, its success raises questions for the wider self-advocacy movement, notably how leadership capacity can be developed among self-advocates.
    Article · Dec 2013
  • [Show abstract] [Hide abstract] ABSTRACT: This article examines Brantlinger and colleagues' longitudinal case study Fighting for Darla; Challenges for family care and professional responsibility [Brantlinger, E.A., S.M. Klein, and S.L. Guskin. 1994. Fighting for Darla; Challenges for family care and professional responsibility. New York: Teachers College Press]. I describe how this piece resonated with me as a mother of a boy considered to have significant disabilities and how it informed my practice as an emerging qualitative researcher. I explore the relationship between this form of methodology and the ‘subjects’ agency referring to my own research and others in the humanities. Brantlinger's work here is historical in its documentation of the experience of a teenager with a label of autism who has not been supported in developing conventional communication and who becomes pregnant and has a child. It is illustrative of the unique contributions she made towards understanding the complexities of daily life for families with children with disabilities. Two decades have passed since this study was published and yet the methodology and lessons learned remain important to informing those of us who value the humanity of people with significant disabilities and respect their sense of agency. Finally, the possible implications for the activist researcher, such as Brantlinger, are discussed.
    Article · Dec 2013
Show more

  • undefined · undefined
  • undefined · undefined
  • undefined · undefined