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Special issue: Human rights

Protection, participation and protection throughparticipation: young people with intellectual disabilitiesand 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, Canada2 Department of Child andYouth Studies, Brock University, St. Catharines, Ontario, Canada

Abstract

Background Research suggests that persons withintellectual disabilities (ID) are expected to be morecompliant than persons without disabilities and thatexpectations for compliance begin in childhood. Nostudy, however, seems yet to have included aprimary focus on the participatory rights, or rightsto express opinions, desires and preferences and tobe heard and taken seriously in decision makingamong young people with ID who are not yet con-sidered legally adult. The purpose of the twocurrent studies was to explore how the right to par-ticipation is negotiated for young people with ID ina family context and to determine family membersrecommendations for strategies to facilitate the par-ticipation of young people with ID.Method In the first study, four young people withID, their mothers and two siblings from four fami-lies took part in semi-structured interviews about

decision making in the family context. In the secondstudy, a mother and daughter from the first studydiscussed and developed strategies to promote par-ticipation for young people with ID.Results In the first study, all participants communi-cated that young people with ID follow an age-typical yet restricted pattern of participation indecisions about their lives.Young peoples participa-tion was consistently framed by familial norms andvalues as well as their families desire to protectthem. In the second study, both participants sug-gested communication about the outcomes of realor imagined decisions would help young familymembers rehearse decision-making strategies thatwould facilitate their autonomy while remainingwithin the bounds of familial norms, values and per-ceptions of safety.Conclusions Although young people with ID maymake fewer independent decisions about their livesthan typically developing peers, support in decisionmaking can enable both increased protection andindependence.

Keywords decision making, family, human rights,intellectual disability, participation, young people

Correspondence: Robyn Saaltink, Department of Sociology,Queens University, Kingston, Ontario, Canada K7L 3N6 (e-mail:[email protected]).

Journal of Intellectual Disability Research doi: 10.1111/j.1365-2788.2012.01649.x

volume 56 part 11 pp 10761086 november 20121076

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2012The Authors. Journal of Intellectual Disability Research 2012 Blackwell Publishing Ltd

Introduction

According to the United Nations (UN) Secretariatfor the Convention on the Rights of Persons withDisabilities (CRPD) (n.d.), the CRPD (UN 2006)forwards the movement towards viewing personswith disabilities as subjects with rights, who arecapable of claiming those rights and making deci-sions for their lives . . . (UN Secretariat for theCRPD n.d., para. 2). The current studies, and the3Rs project of which the current studies are a part,are broadly premised on the understanding that eve-ryone should have a say, and be able to claim theright to have a say, about their lives. The currentstudies focus on the nature and promotion of par-ticipatory rights, or rights to express opinions,desires and preferences and to be heard and takenseriously in decision making (Bjerke 2011), foryoung people with intellectual disabilities (ID) inthe family context.

The 3Rs Human Rights Community UniversityResearch Alliance was initiated in 2000 as a part-nership between a community agency that supportspeople with ID and researchers at Brock University(Owen & Griffiths 2009). Guided by the insight thatpeople with ID may be unaware they have rights,including the right not to be abused (Mazzucchelli2001), because caregivers often reward compliance(Sobsey 1994) and make decisions for people withID (Schultz 1996), 3Rs researchers developed andtested a human rights education programme for usein community agencies that support people with IDwith the goal of teaching adults with ID about theirhuman rights and how to claim them (Griffithset al. 2003; Owen et al. 2003, 2009; Tarulli et al.2004; Owen & Griffiths 2009). Preliminary resultssuggest the use of 3Rs curricula with people withID leads to an increase in rights knowledge andability to redress rights violations (Tardif-Williamset al. 2007).3Rs researchers additionally interviewed families

to gather preliminary information needed to createhuman rights educational materials for use withfamilies (Tarulli et al. 2006; Tardif-Williams et al.2008). Families communicated that the rights toself-determination and autonomy of their memberswith ID were important but that their actions wereadditionally guided by familial values and a desireto provide protection. The present research exam-

ined how rights to protection and participation arenegotiated in the family context to understand how3Rs rights education materials could be adapted foruse with families that include young people with ID.

People with intellectual disabilities andparticipation in the family context

The few studies relating to people with ID and par-ticipation in the family have indicated that parentsand caregivers attempt to balance a desire topromote autonomy with a desire to protect indi-viduals who are often perceived as vulnerable toharm (Van Hooren et al. 2005; Almack et al. 2009).For parents of people with ID who participated ininterviews in the research carried out by VanHooren et al. (2005), intervention and freedom werenot seen as mutually exclusive. Freedom was con-ceptualised relationally and was achieved by actingresponsibly with the support of others. In a rarestudy seeking the perspectives of people with ID,Mill et al. (2009) interviewed six young adults aged1825 years. Two participants were seeking increas-ing levels of independence with familial support;three participants were content with current levelsof independence; and one participant was frustratedby the absence of familial support for independ-ence. These findings suggest that parents of youngpeople with ID are not simply paternalistic but,rather, may attempt to promote independence whileaddressing a perceived or actual need for support.

The importance of having opportunities to makedecisions, the complexity of familial relations andthe lack of research involving the perspectives ofpeople with ID justify further investigation. Addi-tionally, although expectations for compliance beginin childhood (Sobsey 1994), it does not appear thatany study has included a primary focus on youngpeople with ID while they are not yet consideredlegally to be adults.

The rights of the child in the family context

The rights enshrined in the UN Convention on theRights of the Child (UN Commission on HumanRights 1990) are often delineated in terms of Ham-marbergs (1990) 3Ps: participation, protection andprovision (Mama 2010). Research on children andyoung people generally has involved investigation

1077Journal of Intellectual Disability Research volume 56 part 11 november 2012

R. Saaltink et al. Young people and participation


into both childrens and parents perspectives ofparticipation and protection. Results suggest nego-tiations and blurring of boundaries between protec-tion and autonomy are typical in familial settings.

Research conducted with children and youth inNorway (Bjerke 2011), the UK (Morrow 1999) andeastern Europe (Tomanovic-Mihajlovic 2000;Tomanovic 2003) revealed similar patterns of par-ticipation: children rarely made, or expressed adesire to make, decisions with complete autonomy.Within- and between-study differences were found,however, in terms of the degree to which childrenfelt they had a say and were respected and valued indecision-making processes, indicating that personal,familial and cultural factors likely contribute to dif-ferences among families. Tomanovic (2003) foundperceptions of unsafe social conditions, combinedwith varying levels of trust in childrens competen-cies, led parents to exercise different types ofcontrol over the actions of children and youth.

Prevalent presumptions of incompetence (Tarulliet al. 2004) combined with popular opinion andgovernmental policies that advocate for independ-ence for people with ID may mean negotiationsbetween protection and participation are moresalient for families that include a member with ID(Almack et al. 2009). A detailed examination ofdecision making for young people with ID wouldhelp determine how considerations and processes,with regard to participatory rights, may differ foryoung people with ID in comparison to both olderchildren with ID and young people without ID,thereby providing a better understanding of theenactment of rights and possibilities for promotingparticipation.

Social domain theory

Social domain theory posits that interactionsbetween parents and their children, with regard toautonomy, differ depending on the domain to whichparticular issues are seen to belong (Smetana &Asquith 1994; Smetana 2000, 2011). Applyingdomain theory to North American parent and ado-lescent perceptions of parental control, researchershave found that both parents and adolescents feelyoung people should make autonomous decisionsfor personal issues, issues seen to affect the indi-vidual actor only (Smetana & Asquith 1994;

Smetana 2000). Both parents and adolescents tendto report that parents should exercise authority overmoral issues that affect the well-being of others, andconventional issues that relate to agreed uponbehaviours that structure social interactions. Adoles-cents tend to interpret multifaceted issues, itemsthat could be seen as belonging to a number ofdomains, as more subject to personal than to paren-tal control (Smetana 2011). Parents are less likely toreport that these issues fall into adolescents per-sonal domain, and are more likely to report thatthese issues are legitimately subject to parentalauthority. For prudential issues, concerning per-sonal health and safety, parents and adolescentsagree that parents should have authority (Smetana& Asquith 1994; Smetana 2000). In the currentstudies, domain theory served as a framework tofacilitate analysis of how and why reported patternsof participation occurred and comparison ofdecision-making patterns for young people with IDand without ID.

Rationale

Two sequential studies were undertaken. Thepurpose of the first study was to examine familymembers perceptions of the way participation foryoung people with ID unfolds in the family context.The second study focused on one familys recom-mendations as to how families can promote andfacilitate independent decision making and activeparticipation of young people with ID.

Method for study 1

The methods for the first study were informed byinterpretative phenomenology (Smith & Osborn2003). The goal of phenomenological research, toilluminate participants perceptions of their experi-ences, echoes the goal of the first study.

Participants

Families were recruited from two community agen-cies that support people with ID in southernOntario, Canada. From each participating family,multiple family members were invited to participatewith the aim of triangulating data (Ma & Norwich2007; Stoner et al. 2007).




For eligibility, participants with ID had to bebetween 12 and 21 years of age, so young peoplecould be interviewed during a time when autonomyor a desire for autonomy typically increases (Tardif-Williams et al. 2008; Almack et al. 2009), but whenthey had not yet switched to adult services. InOntario, school age for persons with ID extends to21 and the legal age of majority is 18 years. Addi-tionally, all participants had to be able to communi-cate verbally.

Ten participants from four families participated ininterviews. In total, four young people with ID, fourparents and two siblings participated. Participantswith ID ranged in age from 14 to 18 years, (with theexception of one participant) were younger than thelegal age of majority, attended high school and livedat home with their families. In each family, themother participated in the parent interview. Thetwo siblings were each 12 years younger thanthe young person with ID.

Procedures

Ethics approval was obtained from the Brock Uni-versity Research Ethics Board (REB). Interviewswere conducted by the first and second authors.Written consent was obtained from all adult partici-pants. Written assent was obtained for participantsaged less than 18 years, with consent provided bytheir parents.

Sibling, youth and parent interviews were con-ducted one at a time. With the exception of threeparticipants with ID, who were, at the parentsrequest, interviewed in the presence of theirparents, all interviews were conducted individually.Interviews were semi-structured to allow for flexibil-ity (Smith & Osborn 2003) and included itemsregarding decision-making processes and barriersthat prevent young people from making decisions.Interviews were audio-recorded and ranged inlength from 20 min to 1.5 h.

Interviews were transcribed and then analysedusing inductive and deductive thematic coding(Braun & Clarke 2006; Fereday & Muir-Cochrane2006). A summary of themes was provided to threeof the four families (the fourth family could not bereached) for the purpose of member checking.While all family members agreed with the interpre-

tation of interview data, parent participants elabo-rated on some of the themes.

Pseudonyms are used throughout.

Results for study 1

All interviews revealed that decision-making proc-esses were consistently framed by familial normsand values as well as a desire to protect youngpeople with ID, who were seen as vulnerable. Thismeant that young people with ID reportedly madefewer independent decisions than their siblingswithout ID.

Autonomous participation

All participating family members reported thatyoung people with ID often make choices with con-siderable autonomy when the outcome is seen toaffect the decision maker only. Examples includewhat to wear, what to eat and how to spend freetime. These personal choices, however, were madewith autonomy only when parents believed youngpeople would make a decision that remained withinthe boundaries of family values, conventions andperceptions of safety. Well, he doesnt choose ofsuch decisions anything we dont want him to have(Jamess sister). When it was determined that theoutcome of autonomous decisions would likely falloutside of this zone, family members were likelyto intervene.

Participation and protection: guidance andparents choice

Family members described situations when youngpeople with ID were guided to make the rightchoice, the choice perceived to be in young peoplesbest interests as determined by family morals andconventions. For some families, guidance simplytook the form of suggesting or encouraging youngpeople to make a particular choice. This involvednegotiations or discussions, often attempting toinfluence young peoples decisions by persuadingthem to understand and accept familial ordominant social values in an effort to protect themfrom harm.

The degree to which young people were perceivedto require protection and thus were able to partici-




pate in decision making seemed to be driven bytheir personal characteristics, which in turn inter-acted with external threats to well-being. In termsof personal characteristics, parents often describedtheir children with ID as lacking flexibility andcomplex decision-making skills, as not being able todiscern between right and wrong, as lacking confi-dence or self-advocacy skills, as lacking specificskills (e.g. money skills) and as being immature,characteristics which led parents to believe youngpeople would make atypical or physically unsafedecisions.

Rarely did these characteristics alone motivateparents to intervene in childrens participation.Parents also feared that, often because of atypicalself-presentations or personal vulnerabilities, youngpeople with ID would be socially rejected or takenadvantage of by others.

You know he doesnt really appreciate . . . thatthere is you know perception of how people aregonna treat you depending on what yourewearing or doing (Jamess mother).

So guidance often took place for issues relating toself-presentation or interactions with others.Although all participants reported that parentsintervened in personal decisions that push theboundaries of what is deemed typical or safe,parents seemed to believe that ultimate decision formany choices that could be perceived as personalshould rest with young people themselves. Whetheryoung people do make the final decision seems torely on parents perceptions of the likelihood thatthe young people would make a decision deemednormative, moral and safe.

For example, Lilys mother often describedguiding her daughter, but rarely described stoppingher from making a choice altogether: I know ifthere was something being said that she didnt wantto do shed go oh no, Im not doing . . . (Lilysmother). In contrast, Charlies mother said:

Other people taking advantage of him . . . Like Idont think that he would choose to do somethingbad, but . . . he might get swayed into doingsomething thats wrong . . . Thats why always theconstant 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 deci-sions about his life because he is not seen asequipped with an equivalent skill set.

Accordingly, when issues were considered toinvolve imminent physical health and safety con-cerns, parents consistently exerted authority. Thetwo items of parentchild conflict, involving refusalto take a vitamin (Lily) and taking off withoutinforming anyone (Charlie), mentioned during theinterviews both arose when young people did notcomply with their parents wishes in these domains.

Decision-making processes as normal and natural

While restrictions on participation were sometimesdescribed as a function of personal characteristics ininteraction with external threats, guidance or paren-tal decision making was often described as normaland natural, . . . same like Id do for [Jamesssister] (Jamess mother). For all family members,autonomy was not always desirable or practical.When issues were seen to affect multiple familymembers, all members of the family reportedly par-ticipated in the decision-making process. Addition-ally, all family members actions were seeminglyconstrained by expectations for respect, establishedby parents, and generally accepted and followed bythe young people with ID and their siblings. Itssorta just an accepted treat them nicely (Jordansbrother).

Enabled choices

All families reported making adaptations to supportthe decision making of young people who, becauseof limited personal abilities or external factors, maynot otherwise have been able to make decisions forthemselves. Jordans brother explained how, with hismother, he provides this support: [A]ny choice heneeds to make he really needs to think about, so wepretty much keep down any of the choices just to acouple things. Parental and sibling intervention inyoung peoples participation was not always, there-fore, necessarily restrictive, as further elaborated inthe second study.

Rationale for study 2

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




about strategies or techniques that could be used byfamilies seeking to promote participation andincreasing levels of autonomy for family memberswith ID.

Method for study 2

Participants

Study 2 involved Lily (aged 16 years) and hermother.

Procedures

Ethics approval was again obtained from the BrockUniversity REB. The family, the first author and herfaculty supervisor met four times in the familyshome. At the first and second meetings, the motherand daughter participated in a semi-structuredinterview focusing on strategies used by the familyto promote increasing independence in decisionmaking. The primary purpose of the third andfourth meetings was to engage in working sessions,informed by a participatory approach to research(Walmsley 2004; Bigby & Frawley 2010). Duringthe working sessions, Lily and her mother reflectedon their experiences, themes derived from inter-views, and transferring strategies reflecting the idi-osyncracies of a particular family context, as theydiscussed the ways that other families mightpromote decision making and participation byyoung people with ID. The second and thirdauthors served as facilitators, encouraging thedescription and elaboration of suggestions andexamples. Data were coded both inductively anddeductively (Braun & Clarke 2006).

Results for study 2

Throughout the second study, Lily and her motherrecommended promoting participation by utilisingstrategies to increase the probability that youngpeople would remain within the boundaries offamilial norms, values and perceptions of safety.Essentially, Lily and her mother elaborated on proc-esses of guided and enabled decision making, sug-gesting that the goal should be to provide youngpeople with the understanding and ability to make

decisions more responsibly and therefore moreautonomously. Participation-promoting strategieswere also seen as providing protection, because theyrequired the development and use of skills indealing with risky situations.

Communication

Lily and her mother agreed that open communica-tion about decision-making options and the poten-tial outcomes of possible or actual decisions couldbe helpful in promoting responsible decisionmaking. For example, when considering the sce-nario of being asked to drink alcohol at a dance,Lilys mother encouraged her daughter to think toherself, Im going to get in trouble, Im not of age,Im on school property. After participating in suchdiscussions, Lily was deemed mature enough toattend high school dances despite the potentialrisks. Thinking through decisions was perceived tobe especially important because, in both studies,Lily and her mother acknowledged that youngpeople with ID may be at increased risk of beingtaken advantage of by others. Similarly, Lily and hermother reported that discussions of the outcomes ofother peoples decisions would support respectfuland responsible decision making.

Practice

Lily and her mother also emphasised the impor-tance of practising decision making.

. . . [L]ike everybody . . . it doesnt obviously andalways [have to] be the right choice . . . But . . . ifyou learned something . . . from the mistake . . .youve also taught yourself something (Lilysmother).

While Lilys mother did not seem to believe thatevery decision needed to have an unambiguouslypositive outcome, she made suggestions, which wereendorsed by her daughter, about ways in whichrisks could be minimised.Young people should beprovided with choice-making opportunities begin-ning at a young age. Opportunities should be tai-lored to developmental ability, with riskier or morecomplex decision-making opportunities presented asyoung people came to understand the consequencesof various actions. Lilys mother believed using such




strategies would allow all young people, regardlessof their abilities, to engage in increasing participa-tion in decisions about their lives.

Working sessions

During the working sessions, Lily and her motherdeveloped a number of strategies that could beaccessed or developed to promote communicationand good decision-making skills. Each of these wasbased on their views of the importance of creatingopportunities for young people to consider the out-comes that might be associated with various coursesof action. Different strategies involved the use ofwebsites or pamphlets presenting scenarios, eachaccompanied by a range of decision-making optionsand their possible consequences, discussion ques-tions and role plays. Using an episode of the TVprogramme The Simpsons, mother and daughterdemonstrated how parents and children couldwatch television together and discuss the outcomesof characters decisions. They also suggested that, insafe environments, such as classrooms, increasinglevels of responsibility and control could be offeredthroughout childhood, both encouraging youngpeople to see themselves as active agents and devel-oping skills that could be used across a broad rangeof decisions and decision-making situations.

Discussion

The first study involved interviews with parents,siblings and young people with ID to investigatefamily members perceptions of ways in which deci-sion making unfolds in the family context. Thesecond study involved four meetings with a motherand her adolescent daughter with ID to seek recom-mendations about ways in which families canpromote and facilitate the decision making and par-ticipation of young people with ID.

The results from the two studies suggest that,within the family context, young family memberswith ID follow an age-typical yet restricted patternof participation in decision making because they arelikely to be seen as at risk of harm. According toparticipants, this vulnerability stems from their per-sonal characteristics in interaction with the broadersocial context, which is often hostile or unaccom-

modating towards disability-related difference. Inthe first study, participants described promotingparticipation by guiding young people as they madedecisions and adapting decision-making scenarios tomake them safer and more accessible. In the secondstudy, Lily and her mother elaborated on theseprocesses, describing strategies to encourage youngpeople to understand and consider the outcomes oftheir decisions.

The negotiations between participation and pro-tection highlighted in the current studies are likelyto be relevant to a range of caring relationships(Morrow 1999; Tomanovic-Mihajlovic 2000;Tomanovic 2003; Van Hooren et al. 2005; Almacket al. 2009; Bjerke 2011). The commitment to par-ticipation found in the current studies, however,would not necessarily generalise to a wider popula-tion for at least three reasons. First, a parent waspresent during interviews with three out of four par-ticipants with ID, which may have affectedresponses. Second, families may have agreed to par-ticipate because they had an interest in promotingparticipation. Third, for eligibility, all the youngpeople had to be able to communicate verbally, nec-essarily limiting the focus of the study to a groupthat may be somewhat advantaged in their potentialfor independence to the extent that it may be facili-tated by verbal expression skills.

Typical yet restricted participation

Domain theory supports the assertion that youngpeople with ID follow an age-typical yet restrictedpattern of decision making (Smetana & Asquith1994; Smetana 2000). As found within familiesincluding young people without disabilities, partici-pants in the current studies reported that youngpeople with ID make personal choices, such as whatto eat for a snack, with considerable autonomy andusually follow parental rules or wishes for acts thatcould be seen as conventional issues, such as dress-ing appropriately as defined by social context. Par-ticipants did not tend to discuss behaviours orintentions to harm others, items falling into themoral domain, but did communicate that parentshold, and family members follow, expectations forrespectful behaviour. Our findings seem consistentwith those of previous studies in suggesting that (1)family members follow parental expectations for




perceived moral issues (Smetana & Asquith 1994;Smetana 2000); (2) family members often includeyoung people with ID in decisions about multifac-eted issues (e.g. friendship issues); and (3) parentsregulate young peoples actions for prudential issues(Smetana & Asquith 1994; Smetana 2000).

At the same time, because they are perceived aslikely to make decisions that could result in harm, are-categorisation of issues may occur for youngpeople with ID. Items may be less likely to be seenas belonging to the personal domain, meaning fewerchoices are thought to be legitimately subject toyoung peoples control. The notion that young peo-ples personal jurisdictions are restricted to protectthem from real and perceived harm is supported bythe suggestion that minority families restrictions onadolescents personal choices may reflect an adap-tive strategy to shield vulnerable young people fromharm (Smetana 2000).

Young people with intellectual disabilities andthe implementation of participatory rights

Restrictions on participation within the family havebeen interpreted as problematic in terms of rightsconcerns, preparedness for participation in civilsociety (Tomanovic-Mihajlovic 2000; Tomanovic2003) and the production of dangerous levels ofover-compliance (Sobsey 1994). Independence andcontrol over decisions affecting ones own life arebecoming increasingly seen as important, as isshown in human rights (e.g. UN 2006, CRPD) andpolicy documents (Almack et al. 2009). Echoingthese concerns, parents involved in the presentstudies expressed belief in the importance of inde-pendence and learning to make morally and pru-dentially sound choices in the face of potentiallyharmful suggestions. However, they also communi-cated that young people were at increased risk ofharm because of their personal characteristics, suchas a lack of problem-solving or more specific (e.g.financial) skills, in interaction with an increasedlikelihood of being taken advantage of by others.Research documenting high rates of maltreatmentexperienced by people with ID supports the notionthat adolescent children with ID are more likelyto be taken advantage of than their siblings orsame-aged peers without ID (Sobsey 1994;

Horner-Johnson & Drum 2006; Reiter et al. 2007;Christensen et al. 2012).

Given these tensions, how do parents determinewhen young people with ID are ready for increasinglevels of independence? The actions of people withID are more readily interpreted as problematiccompared to the actions of typically developingpeers (Davis & Watson 2001; Goodley 2001), sug-gesting cultural responses to disability likely compli-cate families considerations of participation andprotection.

The content of typical young peoples personaljurisdictions is culturally defined (Smetana 2000),meaning adolescent autonomy varies based, in part,on familial expectations of the roles of young familymembers. More items are typically defined as legiti-mately subject to their control as they age, so thatolder, versus younger, children tend to make moreindependent choices (Smetana 2000). In the currentstudies, however, age was not found to be a deter-minant of level of participation. Jordan, the onlylegally adult participant with ID, reportedly madethe fewest independent decisions.

As articulated by some parents, people with IDare often perceived as developmentally younger thantheir chronological age. Even when participantswith ID were considered mature, as James and Lilywere, there remained a perception that chronologi-cal age was not necessarily accompanied by norma-tive developmental milestones. Perhaps, dominantconceptions of disability, which emphasise vulner-ability and risk and involve a discourse wherechronological age does not match developmentalage, negate the social markers that typically indicatewhen young people should be afforded increasinglevels of independence.

Attempts to balance autonomy and protection fortypical young people vary within and between cul-tures as a function of personal, familial and culturalrisk factors and characteristics (Smetana & Asquith1994; Morrow 1999; Smetana 2000; Tomanovic-Mihajlovic 2000; Tomanovic 2003; Bjerke 2011).Parents of young people with ID, however, have todetermine when their children are ready for increas-ing levels of participation in the relative absence ofsocial indicators available to most parents, renderingthese processes additionally ambiguous andcomplex. The findings therefore underline the appli-cability of domain theory to parentyouth relations




for adolescents with ID by highlighting ways inwhich not only young peoples observable character-istics and situations, but also dominant understand-ings of normal developmental trajectories, informchanging parentyouth relations.

While concerns about protection led familymembers to intervene in decision making, theseinterventions often enhanced young peoples partici-pation and promoted increased freedom, bothimmediately and prospectively. Ward & Stewart(2008) argued that human rights form a protectivebarrier around persons so they can pursue theirown interests, but that people with ID may notalways have the prerequisite resources needed to doso. Accordingly, caregivers or others may need toprovide scaffolding by, for example, structuringdecision-making tasks, translating preferences orteaching required skills so people with ID canachieve their goals (Ward & Stewart 2008). In thepresent studies, family members reported usingcomparable techniques when they guided orenabled decisions. By scaffolding, familymembers actions can be interpreted as supportingand upholding the participatory rights of youngpeople. Ward & Stewart (2008) warn, however, thatcaregivers should only interfere when necessary.Establishing the distinction between necessary andpaternalistic interventions may prove difficult inlight of the ambiguities inherent in evaluating theneed for protection for parents of young people withID. The practices recommended by Lily and hermother in the second study provide further concreteexamples of ways to scaffold young peoples partici-pation and offer techniques that could help over-come the risk of overly paternalistic relations.

Van Hooren et al. (2005) found that independ-ence arose in the context of trusting and respectfulrelationships. A possible outcome of communicationand mutually trusting relationships is suggested byLily and her mothers insistence that everyonemakes mistakes; neither expected that the otherwould make consistently unambiguously gooddecisions. Through systematic support for learningresponsible decision making, Lily achieved increas-ing levels of both protection from external harmsand independence in decision making.

Lilys experiences indicate that discussion aboutand exploration of young peoples interests in andability to make choices may prompt re-evaluation of

the range of decision-making options that should orcould be available to young people. In this way, aneducation programme could lead to a new consid-eration of the capability of young people with ID,potentially enabling all family members to see previ-ously unconsidered abilities and possibilities forindependence.

Future research

Future research should be conducted to implementand evaluate the strategies suggested by Lily andher mother. Further, a wider range of participantsshould be recruited. Finally, a direct comparison ofthe participation of young people with ID and theirtypically developing peers is needed, possiblythrough an application of Smetanas (2000) datacollection and analysis methods.

Acknowledgements

We would like to thank the community agenciesaffiliated with this study for their support and com-munity agency staff for their assistance in recruitingparticipants. We would also like to express ourgratitude to the families who generously sharedtheir time, experiences and expertise.

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Accepted 19 September 2012




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