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Journal of Intellectual Disability Research

1076

doi: 10.1111/j.1365-2788.2012.01649.x

volume 56 part 11 pp 10761086 november 2012

Special issue: Human rights

Protection, participation and protection through

participation: young people with intellectual disabilities
and decision making in the family context
R. Saaltink,1 G. MacKinnon,2 F. Owen2 & C. Tardif-Williams2
1 Department of Sociology, Queens University, Kingston, Ontario, Canada
2 Department of Child andYouth Studies, Brock University, St. Catharines, Ontario, Canada

Abstract
Background Research suggests that persons with
intellectual disabilities (ID) are expected to be more
compliant than persons without disabilities and that
expectations for compliance begin in childhood. No
study, however, seems yet to have included a
primary focus on the participatory rights, or rights
to express opinions, desires and preferences and to
be heard and taken seriously in decision making
among young people with ID who are not yet considered legally adult. The purpose of the two
current studies was to explore how the right to participation is negotiated for young people with ID in
a family context and to determine family members
recommendations for strategies to facilitate the participation of young people with ID.
Method In the first study, four young people with
ID, their mothers and two siblings from four families took part in semi-structured interviews about

Correspondence: Robyn Saaltink, Department of Sociology,

Queens University, Kingston, Ontario, Canada K7L 3N6 (e-mail:
0rrs@queensu.ca).

decision making in the family context. In the second

study, a mother and daughter from the first study
discussed and developed strategies to promote participation for young people with ID.
Results In the first study, all participants communicated that young people with ID follow an agetypical yet restricted pattern of participation in
decisions about their lives. Young peoples participation was consistently framed by familial norms and
values as well as their families desire to protect
them. In the second study, both participants suggested communication about the outcomes of real
or imagined decisions would help young family
members rehearse decision-making strategies that
would facilitate their autonomy while remaining
within the bounds of familial norms, values and perceptions of safety.
Conclusions Although young people with ID may
make fewer independent decisions about their lives
than typically developing peers, support in decision
making can enable both increased protection and
independence.
Keywords decision making, family, human rights,
intellectual disability, participation, young people

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Introduction
According to the United Nations (UN) Secretariat
for the Convention on the Rights of Persons with
Disabilities (CRPD) (n.d.), the CRPD (UN 2006)
forwards the movement towards viewing persons
with disabilities as subjects with rights, who are
capable of claiming those rights and making decisions for their lives . . . (UN Secretariat for the
CRPD n.d., para. 2). The current studies, and the
3Rs project of which the current studies are a part,
are broadly premised on the understanding that everyone should have a say, and be able to claim the
right to have a say, about their lives. The current
studies focus on the nature and promotion of participatory rights, or rights to express opinions,
desires and preferences and to be heard and taken
seriously in decision making (Bjerke 2011), for
young people with intellectual disabilities (ID) in
the family context.
The 3Rs Human Rights Community University
Research Alliance was initiated in 2000 as a partnership between a community agency that supports
people with ID and researchers at Brock University
(Owen & Griffiths 2009). Guided by the insight that
people with ID may be unaware they have rights,
including the right not to be abused (Mazzucchelli
2001), because caregivers often reward compliance
(Sobsey 1994) and make decisions for people with
ID (Schultz 1996), 3Rs researchers developed and
tested a human rights education programme for use
in community agencies that support people with ID
with the goal of teaching adults with ID about their
human rights and how to claim them (Griffiths
et al. 2003; Owen et al. 2003, 2009; Tarulli et al.
2004; Owen & Griffiths 2009). Preliminary results
suggest the use of 3Rs curricula with people with
ID leads to an increase in rights knowledge and
ability to redress rights violations (Tardif-Williams
et al. 2007).
3Rs researchers additionally interviewed families
to gather preliminary information needed to create
human rights educational materials for use with
families (Tarulli et al. 2006; Tardif-Williams et al.
2008). Families communicated that the rights to
self-determination and autonomy of their members
with ID were important but that their actions were
additionally guided by familial values and a desire
to provide protection. The present research exam-

ined how rights to protection and participation are

negotiated in the family context to understand how
3Rs rights education materials could be adapted for
use with families that include young people with ID.

People with intellectual disabilities and

participation in the family context
The few studies relating to people with ID and participation in the family have indicated that parents
and caregivers attempt to balance a desire to
promote autonomy with a desire to protect individuals who are often perceived as vulnerable to
harm (Van Hooren et al. 2005; Almack et al. 2009).
For parents of people with ID who participated in
interviews in the research carried out by Van
Hooren et al. (2005), intervention and freedom were
not seen as mutually exclusive. Freedom was conceptualised relationally and was achieved by acting
responsibly with the support of others. In a rare
study seeking the perspectives of people with ID,
Mill et al. (2009) interviewed six young adults aged
1825 years. Two participants were seeking increasing levels of independence with familial support;
three participants were content with current levels
of independence; and one participant was frustrated
by the absence of familial support for independence. These findings suggest that parents of young
people with ID are not simply paternalistic but,
rather, may attempt to promote independence while
addressing a perceived or actual need for support.
The importance of having opportunities to make
decisions, the complexity of familial relations and
the lack of research involving the perspectives of
people with ID justify further investigation. Additionally, although expectations for compliance begin
in childhood (Sobsey 1994), it does not appear that
any study has included a primary focus on young
people with ID while they are not yet considered
legally to be adults.

The rights of the child in the family context

The rights enshrined in the UN Convention on the
Rights of the Child (UN Commission on Human
Rights 1990) are often delineated in terms of Hammarbergs (1990) 3Ps: participation, protection and
provision (Mama 2010). Research on children and
young people generally has involved investigation

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into both childrens and parents perspectives of

participation and protection. Results suggest negotiations and blurring of boundaries between protection and autonomy are typical in familial settings.
Research conducted with children and youth in
Norway (Bjerke 2011), the UK (Morrow 1999) and
eastern Europe (Tomanovic-Mihajlovic 2000;
Tomanovic 2003) revealed similar patterns of participation: children rarely made, or expressed a
desire to make, decisions with complete autonomy.
Within- and between-study differences were found,
however, in terms of the degree to which children
felt they had a say and were respected and valued in
decision-making processes, indicating that personal,
familial and cultural factors likely contribute to differences among families. Tomanovic (2003) found
perceptions of unsafe social conditions, combined
with varying levels of trust in childrens competencies, led parents to exercise different types of
control over the actions of children and youth.
Prevalent presumptions of incompetence (Tarulli
et al. 2004) combined with popular opinion and
governmental policies that advocate for independence for people with ID may mean negotiations
between protection and participation are more
salient for families that include a member with ID
(Almack et al. 2009). A detailed examination of
decision making for young people with ID would
help determine how considerations and processes,
with regard to participatory rights, may differ for
young people with ID in comparison to both older
children with ID and young people without ID,
thereby providing a better understanding of the
enactment of rights and possibilities for promoting
participation.

Social domain theory

Social domain theory posits that interactions
between parents and their children, with regard to
autonomy, differ depending on the domain to which
particular issues are seen to belong (Smetana &
Asquith 1994; Smetana 2000, 2011). Applying
domain theory to North American parent and adolescent perceptions of parental control, researchers
have found that both parents and adolescents feel
young people should make autonomous decisions
for personal issues, issues seen to affect the individual actor only (Smetana & Asquith 1994;

Smetana 2000). Both parents and adolescents tend

to report that parents should exercise authority over
moral issues that affect the well-being of others, and
conventional issues that relate to agreed upon
behaviours that structure social interactions. Adolescents tend to interpret multifaceted issues, items
that could be seen as belonging to a number of
domains, as more subject to personal than to parental control (Smetana 2011). Parents are less likely to
report that these issues fall into adolescents personal domain, and are more likely to report that
these issues are legitimately subject to parental
authority. For prudential issues, concerning personal health and safety, parents and adolescents
agree that parents should have authority (Smetana
& Asquith 1994; Smetana 2000). In the current
studies, domain theory served as a framework to
facilitate analysis of how and why reported patterns
of participation occurred and comparison of
decision-making patterns for young people with ID
and without ID.

Rationale
Two sequential studies were undertaken. The
purpose of the first study was to examine family
members perceptions of the way participation for
young people with ID unfolds in the family context.
The second study focused on one familys recommendations as to how families can promote and
facilitate independent decision making and active
participation of young people with ID.

Method for study 1

The methods for the first study were informed by
interpretative phenomenology (Smith & Osborn
2003). The goal of phenomenological research, to
illuminate participants perceptions of their experiences, echoes the goal of the first study.

Participants
Families were recruited from two community agencies that support people with ID in southern
Ontario, Canada. From each participating family,
multiple family members were invited to participate
with the aim of triangulating data (Ma & Norwich
2007; Stoner et al. 2007).

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For eligibility, participants with ID had to be

between 12 and 21 years of age, so young people
could be interviewed during a time when autonomy
or a desire for autonomy typically increases (TardifWilliams et al. 2008; Almack et al. 2009), but when
they had not yet switched to adult services. In
Ontario, school age for persons with ID extends to
21 and the legal age of majority is 18 years. Additionally, all participants had to be able to communicate verbally.
Ten participants from four families participated in
interviews. In total, four young people with ID, four
parents and two siblings participated. Participants
with ID ranged in age from 14 to 18 years, (with the
exception of one participant) were younger than the
legal age of majority, attended high school and lived
at home with their families. In each family, the
mother participated in the parent interview. The
two siblings were each 12 years younger than
the young person with ID.

Procedures
Ethics approval was obtained from the Brock University Research Ethics Board (REB). Interviews
were conducted by the first and second authors.
Written consent was obtained from all adult participants. Written assent was obtained for participants
aged less than 18 years, with consent provided by
their parents.
Sibling, youth and parent interviews were conducted one at a time. With the exception of three
participants with ID, who were, at the parents
request, interviewed in the presence of their
parents, all interviews were conducted individually.
Interviews were semi-structured to allow for flexibility (Smith & Osborn 2003) and included items
regarding decision-making processes and barriers
that prevent young people from making decisions.
Interviews were audio-recorded and ranged in
length from 20 min to 1.5 h.
Interviews were transcribed and then analysed
using inductive and deductive thematic coding
(Braun & Clarke 2006; Fereday & Muir-Cochrane
2006). A summary of themes was provided to three
of the four families (the fourth family could not be
reached) for the purpose of member checking.
While all family members agreed with the interpre-

tation of interview data, parent participants elaborated on some of the themes.

Pseudonyms are used throughout.

Results for study 1

All interviews revealed that decision-making processes were consistently framed by familial norms
and values as well as a desire to protect young
people with ID, who were seen as vulnerable. This
meant that young people with ID reportedly made
fewer independent decisions than their siblings
without ID.

Autonomous participation
All participating family members reported that
young people with ID often make choices with considerable autonomy when the outcome is seen to
affect the decision maker only. Examples include
what to wear, what to eat and how to spend free
time. These personal choices, however, were made
with autonomy only when parents believed young
people would make a decision that remained within
the boundaries of family values, conventions and
perceptions of safety. Well, he doesnt choose of
such decisions anything we dont want him to have
(Jamess sister). When it was determined that the
outcome of autonomous decisions would likely fall
outside of this zone, family members were likely
to intervene.

Participation and protection: guidance and

parents choice
Family members described situations when young
people with ID were guided to make the right
choice, the choice perceived to be in young peoples
best interests as determined by family morals and
conventions. For some families, guidance simply
took the form of suggesting or encouraging young
people to make a particular choice. This involved
negotiations or discussions, often attempting to
influence young peoples decisions by persuading
them to understand and accept familial or
dominant social values in an effort to protect them
from harm.
The degree to which young people were perceived
to require protection and thus were able to partici-

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pate in decision making seemed to be driven by

their personal characteristics, which in turn interacted with external threats to well-being. In terms
of personal characteristics, parents often described
their children with ID as lacking flexibility and
complex decision-making skills, as not being able to
discern between right and wrong, as lacking confidence or self-advocacy skills, as lacking specific
skills (e.g. money skills) and as being immature,
characteristics which led parents to believe young
people would make atypical or physically unsafe
decisions.
Rarely did these characteristics alone motivate
parents to intervene in childrens participation.
Parents also feared that, often because of atypical
self-presentations or personal vulnerabilities, young
people with ID would be socially rejected or taken
advantage of by others.
You know he doesnt really appreciate . . . that
there is you know perception of how people are
gonna treat you depending on what youre
wearing or doing (Jamess mother).
So guidance often took place for issues relating to
self-presentation or interactions with others.
Although all participants reported that parents
intervened in personal decisions that push the
boundaries of what is deemed typical or safe,
parents seemed to believe that ultimate decision for
many choices that could be perceived as personal
should rest with young people themselves. Whether
young people do make the final decision seems to
rely on parents perceptions of the likelihood that
the young people would make a decision deemed
normative, moral and safe.
For example, Lilys mother often described
guiding her daughter, but rarely described stopping
her from making a choice altogether: I know if
there was something being said that she didnt want
to do shed go oh no, Im not doing . . . (Lilys
mother). In contrast, Charlies mother said:
Other people taking advantage of him . . . Like I
dont think that he would choose to do something
bad, but . . . he might get swayed into doing
something thats wrong . . . Thats why always the
constant supervision with him.
While Lily is thought to have internalised morals,
values and self-protection skills needed to counter

external threats, Charlie participates less in decisions about his life because he is not seen as
equipped with an equivalent skill set.
Accordingly, when issues were considered to
involve imminent physical health and safety concerns, parents consistently exerted authority. The
two items of parentchild conflict, involving refusal
to take a vitamin (Lily) and taking off without
informing anyone (Charlie), mentioned during the
interviews both arose when young people did not
comply with their parents wishes in these domains.

Decision-making processes as normal and natural

While restrictions on participation were sometimes
described as a function of personal characteristics in
interaction with external threats, guidance or parental decision making was often described as normal
and natural, . . . same like Id do for [Jamess
sister] (Jamess mother). For all family members,
autonomy was not always desirable or practical.
When issues were seen to affect multiple family
members, all members of the family reportedly participated in the decision-making process. Additionally, all family members actions were seemingly
constrained by expectations for respect, established
by parents, and generally accepted and followed by
the young people with ID and their siblings. Its
sorta just an accepted treat them nicely (Jordans
brother).

Enabled choices
All families reported making adaptations to support
the decision making of young people who, because
of limited personal abilities or external factors, may
not otherwise have been able to make decisions for
themselves. Jordans brother explained how, with his
mother, he provides this support: [A]ny choice he
needs to make he really needs to think about, so we
pretty much keep down any of the choices just to a
couple things. Parental and sibling intervention in
young peoples participation was not always, therefore, necessarily restrictive, as further elaborated in
the second study.

Rationale for study 2

Following up on the first study, the aim of the
second study was to seek information and guidance

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about strategies or techniques that could be used by

families seeking to promote participation and
increasing levels of autonomy for family members
with ID.

decisions more responsibly and therefore more

autonomously. Participation-promoting strategies
were also seen as providing protection, because they
required the development and use of skills in
dealing with risky situations.

Method for study 2

Communication

Participants

Lily and her mother agreed that open communication about decision-making options and the potential outcomes of possible or actual decisions could
be helpful in promoting responsible decision
making. For example, when considering the scenario of being asked to drink alcohol at a dance,
Lilys mother encouraged her daughter to think to
herself, Im going to get in trouble, Im not of age,
Im on school property. After participating in such
discussions, Lily was deemed mature enough to
attend high school dances despite the potential
risks. Thinking through decisions was perceived to
be especially important because, in both studies,
Lily and her mother acknowledged that young
people with ID may be at increased risk of being
taken advantage of by others. Similarly, Lily and her
mother reported that discussions of the outcomes of
other peoples decisions would support respectful
and responsible decision making.

Study 2 involved Lily (aged 16 years) and her

mother.

Procedures
Ethics approval was again obtained from the Brock
University REB. The family, the first author and her
faculty supervisor met four times in the familys
home. At the first and second meetings, the mother
and daughter participated in a semi-structured
interview focusing on strategies used by the family
to promote increasing independence in decision
making. The primary purpose of the third and
fourth meetings was to engage in working sessions,
informed by a participatory approach to research
(Walmsley 2004; Bigby & Frawley 2010). During
the working sessions, Lily and her mother reflected
on their experiences, themes derived from interviews, and transferring strategies reflecting the idiosyncracies of a particular family context, as they
discussed the ways that other families might
promote decision making and participation by
young people with ID. The second and third
authors served as facilitators, encouraging the
description and elaboration of suggestions and
examples. Data were coded both inductively and
deductively (Braun & Clarke 2006).

Results for study 2

Throughout the second study, Lily and her mother
recommended promoting participation by utilising
strategies to increase the probability that young
people would remain within the boundaries of
familial norms, values and perceptions of safety.
Essentially, Lily and her mother elaborated on processes of guided and enabled decision making, suggesting that the goal should be to provide young
people with the understanding and ability to make

Practice
Lily and her mother also emphasised the importance of practising decision making.
. . . [L]ike everybody . . . it doesnt obviously and
always [have to] be the right choice . . . But . . . if
you learned something . . . from the mistake . . .
youve also taught yourself something (Lilys
mother).
While Lilys mother did not seem to believe that
every decision needed to have an unambiguously
positive outcome, she made suggestions, which were
endorsed by her daughter, about ways in which
risks could be minimised. Young people should be
provided with choice-making opportunities beginning at a young age. Opportunities should be tailored to developmental ability, with riskier or more
complex decision-making opportunities presented as
young people came to understand the consequences
of various actions. Lilys mother believed using such

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strategies would allow all young people, regardless

of their abilities, to engage in increasing participation in decisions about their lives.

Working sessions
During the working sessions, Lily and her mother
developed a number of strategies that could be
accessed or developed to promote communication
and good decision-making skills. Each of these was
based on their views of the importance of creating
opportunities for young people to consider the outcomes that might be associated with various courses
of action. Different strategies involved the use of
websites or pamphlets presenting scenarios, each
accompanied by a range of decision-making options
and their possible consequences, discussion questions and role plays. Using an episode of the TV
programme The Simpsons, mother and daughter
demonstrated how parents and children could
watch television together and discuss the outcomes
of characters decisions. They also suggested that, in
safe environments, such as classrooms, increasing
levels of responsibility and control could be offered
throughout childhood, both encouraging young
people to see themselves as active agents and developing skills that could be used across a broad range
of decisions and decision-making situations.

modating towards disability-related difference. In

the first study, participants described promoting
participation by guiding young people as they made
decisions and adapting decision-making scenarios to
make them safer and more accessible. In the second
study, Lily and her mother elaborated on these
processes, describing strategies to encourage young
people to understand and consider the outcomes of
their decisions.
The negotiations between participation and protection highlighted in the current studies are likely
to be relevant to a range of caring relationships
(Morrow 1999; Tomanovic-Mihajlovic 2000;
Tomanovic 2003; Van Hooren et al. 2005; Almack
et al. 2009; Bjerke 2011). The commitment to participation found in the current studies, however,
would not necessarily generalise to a wider population for at least three reasons. First, a parent was
present during interviews with three out of four participants with ID, which may have affected
responses. Second, families may have agreed to participate because they had an interest in promoting
participation. Third, for eligibility, all the young
people had to be able to communicate verbally, necessarily limiting the focus of the study to a group
that may be somewhat advantaged in their potential
for independence to the extent that it may be facilitated by verbal expression skills.

Typical yet restricted participation

Discussion
The first study involved interviews with parents,
siblings and young people with ID to investigate
family members perceptions of ways in which decision making unfolds in the family context. The
second study involved four meetings with a mother
and her adolescent daughter with ID to seek recommendations about ways in which families can
promote and facilitate the decision making and participation of young people with ID.
The results from the two studies suggest that,
within the family context, young family members
with ID follow an age-typical yet restricted pattern
of participation in decision making because they are
likely to be seen as at risk of harm. According to
participants, this vulnerability stems from their personal characteristics in interaction with the broader
social context, which is often hostile or unaccom-

Domain theory supports the assertion that young

people with ID follow an age-typical yet restricted
pattern of decision making (Smetana & Asquith
1994; Smetana 2000). As found within families
including young people without disabilities, participants in the current studies reported that young
people with ID make personal choices, such as what
to eat for a snack, with considerable autonomy and
usually follow parental rules or wishes for acts that
could be seen as conventional issues, such as dressing appropriately as defined by social context. Participants did not tend to discuss behaviours or
intentions to harm others, items falling into the
moral domain, but did communicate that parents
hold, and family members follow, expectations for
respectful behaviour. Our findings seem consistent
with those of previous studies in suggesting that (1)
family members follow parental expectations for

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perceived moral issues (Smetana & Asquith 1994;

Smetana 2000); (2) family members often include
young people with ID in decisions about multifaceted issues (e.g. friendship issues); and (3) parents
regulate young peoples actions for prudential issues
(Smetana & Asquith 1994; Smetana 2000).
At the same time, because they are perceived as
likely to make decisions that could result in harm, a
re-categorisation of issues may occur for young
people with ID. Items may be less likely to be seen
as belonging to the personal domain, meaning fewer
choices are thought to be legitimately subject to
young peoples control. The notion that young peoples personal jurisdictions are restricted to protect
them from real and perceived harm is supported by
the suggestion that minority families restrictions on
adolescents personal choices may reflect an adaptive strategy to shield vulnerable young people from
harm (Smetana 2000).

Young people with intellectual disabilities and

the implementation of participatory rights
Restrictions on participation within the family have
been interpreted as problematic in terms of rights
concerns, preparedness for participation in civil
society (Tomanovic-Mihajlovic 2000; Tomanovic
2003) and the production of dangerous levels of
over-compliance (Sobsey 1994). Independence and
control over decisions affecting ones own life are
becoming increasingly seen as important, as is
shown in human rights (e.g. UN 2006, CRPD) and
policy documents (Almack et al. 2009). Echoing
these concerns, parents involved in the present
studies expressed belief in the importance of independence and learning to make morally and prudentially sound choices in the face of potentially
harmful suggestions. However, they also communicated that young people were at increased risk of
harm because of their personal characteristics, such
as a lack of problem-solving or more specific (e.g.
financial) skills, in interaction with an increased
likelihood of being taken advantage of by others.
Research documenting high rates of maltreatment
experienced by people with ID supports the notion
that adolescent children with ID are more likely
to be taken advantage of than their siblings or
same-aged peers without ID (Sobsey 1994;

Horner-Johnson & Drum 2006; Reiter et al. 2007;

Christensen et al. 2012).
Given these tensions, how do parents determine
when young people with ID are ready for increasing
levels of independence? The actions of people with
ID are more readily interpreted as problematic
compared to the actions of typically developing
peers (Davis & Watson 2001; Goodley 2001), suggesting cultural responses to disability likely complicate families considerations of participation and
protection.
The content of typical young peoples personal
jurisdictions is culturally defined (Smetana 2000),
meaning adolescent autonomy varies based, in part,
on familial expectations of the roles of young family
members. More items are typically defined as legitimately subject to their control as they age, so that
older, versus younger, children tend to make more
independent choices (Smetana 2000). In the current
studies, however, age was not found to be a determinant of level of participation. Jordan, the only
legally adult participant with ID, reportedly made
the fewest independent decisions.
As articulated by some parents, people with ID
are often perceived as developmentally younger than
their chronological age. Even when participants
with ID were considered mature, as James and Lily
were, there remained a perception that chronological age was not necessarily accompanied by normative developmental milestones. Perhaps, dominant
conceptions of disability, which emphasise vulnerability and risk and involve a discourse where
chronological age does not match developmental
age, negate the social markers that typically indicate
when young people should be afforded increasing
levels of independence.
Attempts to balance autonomy and protection for
typical young people vary within and between cultures as a function of personal, familial and cultural
risk factors and characteristics (Smetana & Asquith
1994; Morrow 1999; Smetana 2000; TomanovicMihajlovic 2000; Tomanovic 2003; Bjerke 2011).
Parents of young people with ID, however, have to
determine when their children are ready for increasing levels of participation in the relative absence of
social indicators available to most parents, rendering
these processes additionally ambiguous and
complex. The findings therefore underline the applicability of domain theory to parentyouth relations

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for adolescents with ID by highlighting ways in

which not only young peoples observable characteristics and situations, but also dominant understandings of normal developmental trajectories, inform
changing parentyouth relations.
While concerns about protection led family
members to intervene in decision making, these
interventions often enhanced young peoples participation and promoted increased freedom, both
immediately and prospectively. Ward & Stewart
(2008) argued that human rights form a protective
barrier around persons so they can pursue their
own interests, but that people with ID may not
always have the prerequisite resources needed to do
so. Accordingly, caregivers or others may need to
provide scaffolding by, for example, structuring
decision-making tasks, translating preferences or
teaching required skills so people with ID can
achieve their goals (Ward & Stewart 2008). In the
present studies, family members reported using
comparable techniques when they guided or
enabled decisions. By scaffolding, family
members actions can be interpreted as supporting
and upholding the participatory rights of young
people. Ward & Stewart (2008) warn, however, that
caregivers should only interfere when necessary.
Establishing the distinction between necessary and
paternalistic interventions may prove difficult in
light of the ambiguities inherent in evaluating the
need for protection for parents of young people with
ID. The practices recommended by Lily and her
mother in the second study provide further concrete
examples of ways to scaffold young peoples participation and offer techniques that could help overcome the risk of overly paternalistic relations.
Van Hooren et al. (2005) found that independence arose in the context of trusting and respectful
relationships. A possible outcome of communication
and mutually trusting relationships is suggested by
Lily and her mothers insistence that everyone
makes mistakes; neither expected that the other
would make consistently unambiguously good
decisions. Through systematic support for learning
responsible decision making, Lily achieved increasing levels of both protection from external harms
and independence in decision making.
Lilys experiences indicate that discussion about
and exploration of young peoples interests in and
ability to make choices may prompt re-evaluation of

the range of decision-making options that should or

could be available to young people. In this way, an
education programme could lead to a new consideration of the capability of young people with ID,
potentially enabling all family members to see previously unconsidered abilities and possibilities for
independence.

Future research
Future research should be conducted to implement
and evaluate the strategies suggested by Lily and
her mother. Further, a wider range of participants
should be recruited. Finally, a direct comparison of
the participation of young people with ID and their
typically developing peers is needed, possibly
through an application of Smetanas (2000) data
collection and analysis methods.

Acknowledgements
We would like to thank the community agencies
affiliated with this study for their support and community agency staff for their assistance in recruiting
participants. We would also like to express our
gratitude to the families who generously shared
their time, experiences and expertise.

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Accepted 19 September 2012

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