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My Life: A Photovoice Exploration of Aspirations of People with Intellectual Disabilities

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Title: My Life: A Photovoice Exploration of Aspirations of People with Intellectual Disabilities
Language: English
Authors: Gisselle Gallego (ORCID 0000-0002-3243-8176), Patricia O'Brien (ORCID 0000-0001-6890-2447), Clara Goossens (ORCID 0009-0001-0983-8593), Trevor Parmenter (ORCID 0000-0002-8297-8488), Vivienne Riches (ORCID 0000-0002-0317-4490), Mary-Ann O'Donovan (ORCID 0000-0002-3378-5305)
Source: Journal of Applied Research in Intellectual Disabilities. 2025 38(2).
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 12
Publication Date: 2025
Document Type: Journal Articles
Reports - Research
Descriptors: Mild Intellectual Disability, Moderate Intellectual Disability, Adults, Aspiration, Photography, Self Determination, Foreign Countries, Activities, Needs
Geographic Terms: Australia
DOI: 10.1111/jar.70027
ISSN: 1360-2322
1468-3148
Abstract: Background: This study aimed to evaluate the everyday ways that individuals with mild and moderate intellectual disabilities exercise choice and control. Method: Photovoice with 17 adults with mild to moderate intellectual disability who were receiving individual funding was conducted. Focus groups were held to review the photos. Findings: While some participants directed the activity they had chosen, others appeared to have been restricted to activities planned and organised by the service provider. Many participants took photos of locations rather than activities. In these cases, the locations they photographed represented their identity or something that was personally meaningful to them. This illustrated the individuals' power to create spaces and/or travel to places that are important to them. Conclusions: It is important to understand how certain activities facilitate choice and control. A critical examination of real choice compared with generic activities framed as choice continues to be needed.
Abstractor: As Provided
Entry Date: 2025
Accession Number: EJ1468919
Database: ERIC
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  Value: <anid>AN0184768021;e0301mar.25;2025Apr29.07:57;v2.2.500</anid> <title id="AN0184768021-1">My Life: A Photovoice Exploration of Aspirations of People With Intellectual Disabilities </title> <p>Background: This study aimed to evaluate the everyday ways that individuals with mild and moderate intellectual disabilities exercise choice and control. Method: Photovoice with 17 adults with mild to moderate intellectual disability who were receiving individual funding was conducted. Focus groups were held to review the photos. Findings: While some participants directed the activity they had chosen, others appeared to have been restricted to activities planned and organised by the service provider. Many participants took photos of locations rather than activities. In these cases, the locations they photographed represented their identity or something that was personally meaningful to them. This illustrated the individuals' power to create spaces and/or travel to places that are important to them. Conclusions: It is important to understand how certain activities facilitate choice and control. A critical examination of real choice compared with generic activities framed as choice continues to be needed.</p> <p>Keywords: choice; control; people with intellectual disability; photovoice</p> <hd id="AN0184768021-2">Summary</hd> <p></p> <ulist> <item> Individual or person‐centred funding models should lead to more choice and control for people with disabilities.</item> <p></p> <item> Few studies have included the voice of people with intellectual disabilities to understand if and how these funding models have resulted in more choice and control.</item> <p></p> <item> Photovoice and focus groups were used to understand the extent of choice experienced in the lives of people with mild and moderate intellectual disabilities in Australia.</item> <p></p> <item> Some people experienced a lot of choice, while others had less choice about what activities they did.</item> </ulist> <p>The lives of Australians with disabilities have been changed significantly by the introduction in 2013 of the National Disability Insurance Scheme (NDIS) and new options of individualised, person‐centred packages of support (Green and Mears [<reflink idref="bib20" id="ref1">20</reflink>]; Mavromaras et al. [<reflink idref="bib24" id="ref2">24</reflink>]). To be eligible for the NDIS, applicants must have a "significant and permanent impairment that substantially reduces their ability to participate in the community and activities/occupations of daily living" and be under 65 years of age (Veli‐Gold et al. [<reflink idref="bib39" id="ref3">39</reflink>]) (p632). Self‐directed support aims to increase the opportunities of people with disability for autonomy, decision‐making, and social inclusion. These goals align with Australia's obligations under the United Nations' Convention on the Rights of Persons with Disabilities (CDRP), to which Australia is a signatory, and the Australia's Disability Strategy 2021–2031 (Australian Government Department of Social Services [<reflink idref="bib1" id="ref4">1</reflink>]). The NDIS system is built on the assumption that each eligible person with a disability will exercise genuine choice and control by engaging in planning meetings to address their "reasonable and necessary" needs, (National Disability Insurance Scheme [<reflink idref="bib26" id="ref5">26</reflink>]), section, 34 contracting services, and managing their budget effectively. In tandem with the plan which outlines the individual's goals and supports required to achieve these goals, is an individualised budget.</p> <p>The NDIS illustrates an international trend towards individualised funding that has increased over recent decades. Individualised funding has been a paradigm shift within the disability sector. Individualised funding aims to provide people with disabilities greater independence, choice, and control by developing a personal budget with money allocated by government to pay for necessary and reasonable services and supports of the person's choosing. Various studies claim positive effects for individualised funding models. For example, Benoot et al. ([<reflink idref="bib3" id="ref6">3</reflink>]) in Belgium found that individualised funding enables people with intellectual disability to realise their aspirations. Fleming et al. reviewed 73 studies that covered a span of 24 years and involved studies in Europe, the United States (US), Canada, and Australia. Positive effects identified involved better health and social care with overall satisfaction and an improved sense of security and quality of life. Benefits reported specifically by people with disabilities were greater flexibility, improved self‐image, greater value for money, community integration, and greater self‐determination or choice and control. Designs of programs differ considerably in different countries, and various challenges exist, but the premise is that individualised funding gives people with disabilities greater flexibility (Laragy et al. [<reflink idref="bib23" id="ref7">23</reflink>]).</p> <p>Limited choice and control is not a new phenomenon for people with intellectual disability. One of the mechanisms that is used to assist people to become more self‐determining is individualised funding (Fleming et al. [<reflink idref="bib19" id="ref8">19</reflink>]) but its impact for people with intellectual disability may not be being realised. A recent review of the NDIS found that less than half the adult participants 25 years and older with intellectual disability (including Down Syndrome) choose what they do each day (Bonyhady and Paul [<reflink idref="bib9" id="ref9">9</reflink>]). This is consistent with the experience in the United Kingdom (UK) (Ferguson [<reflink idref="bib17" id="ref10">17</reflink>]) where improvements in choice and control have been shown to be variable. Even when choice is made available for people with intellectual disability there is no guarantee that it will contribute a person's quality of life (Neely‐Barnes et al. [<reflink idref="bib29" id="ref11">29</reflink>]). There are several complex skills involved in making a choice and then communicating preferences. These include taking initiative and being motivated to act on a choice (Wehmeyer and Powers [<reflink idref="bib45" id="ref12">45</reflink>]). According to Wehmeyer, people can be educated in their decision‐making ability and consequently have more self‐determination. Wehmeyer defined self‐determination as "acting as the primary causal agent in one's life and making choices and decisions regarding one's quality of life free from undue external influence or interference" (Wehmeyer et al. [<reflink idref="bib42" id="ref13">42</reflink>] p. 13).</p> <p>Many barriers to participation in the NDIS have been identified (National Disability Insurance Scheme [<reflink idref="bib27" id="ref14">27</reflink>]). Such barriers extend to the implementation and execution of the values that underpin the system. Mavromaras et al. ([<reflink idref="bib24" id="ref15">24</reflink>]) found that compared to other disability groups, people with intellectual disability who access the NDIS had less choice and control over supports. Apart from the need to develop greater self‐determination, other potential restrictions on choice and control have included living and working environments (Meltzer et al. [<reflink idref="bib25" id="ref16">25</reflink>]; Warr et al. [<reflink idref="bib41" id="ref17">41</reflink>]), knowledge and skills for negotiating the NDIS system, including that of support workers (Mavromaras et al. [<reflink idref="bib24" id="ref18">24</reflink>]), and restrictions arising from family intervention (Bigby et al. [<reflink idref="bib5" id="ref19">5</reflink>]; Bigby et al. [<reflink idref="bib6" id="ref20">6</reflink>]; Curryer et al. [<reflink idref="bib14" id="ref21">14</reflink>]). Serious concern has been raised about the impact of the NDIS on well‐being and quality of life (Dowse et al. [<reflink idref="bib15" id="ref22">15</reflink>], [<reflink idref="bib16" id="ref23">16</reflink>]; O'Connor [<reflink idref="bib31" id="ref24">31</reflink>]; Soldatic et al. [<reflink idref="bib36" id="ref25">36</reflink>]) and, in particular, how it leads to exercising of voice, choice and control, self‐esteem, and a sense of well‐being for people with intellectual disability (National Disability Insurance Scheme (NDIS) [<reflink idref="bib28" id="ref26">28</reflink>]).</p> <p>People with intellectual disability as a primary diagnosis account for approximately 29.53%, making up one of the largest single groups of adult participants in the NDIS (National Disability Insurance Scheme [<reflink idref="bib27" id="ref27">27</reflink>]). There have been few studies that explore the experience of the NDIS from the perspective of people with intellectual disabilities. According to a review by Bigby ([<reflink idref="bib4" id="ref28">4</reflink>]) who explored the outcomes and experiences of adults with intellectual disability with the NDIS published in peer‐reviewed articles between 2014 and 2020, there were only 10 empirical papers with small sample sizes. These studies indicate, on a small scale, that the promises of the NDIS with regard to choice and control do not always materialise for this population. Using a co‐design approach, the present study seeks to expand the evidence on the experiences of people with intellectual disability across several Australian states in exercising choice and control. This research aimed to evaluate the everyday ways that individuals with mild and moderate intellectual disability exercise choice and control.</p> <p>The study was phase two of a broader project conducted over three years using a mixed method design. Phase one was an in‐person structured interview, the results of which are reported elsewhere. The overall aim of the project was to explore the realities of living with intellectual disability in Australia and the impact of individualised funding arising from the introduction of the NDIS.</p> <hd id="AN0184768021-3">Method</hd> <p></p> <hd id="AN0184768021-4">Study Design</hd> <p>This study used photovoice to collect data. First developed by Wang and Burris (Wang and Burris [<reflink idref="bib40" id="ref29">40</reflink>]), photovoice is a participatory action method that involves taking photos that can be used to reflect on participants' experiences, ideas or feelings (Jurkowski [<reflink idref="bib22" id="ref30">22</reflink>]). Photovoice has been described as an accessible method that also offers the opportunity for people with disability to develop new skills, make decisions and build confidence (Cluley [<reflink idref="bib13" id="ref31">13</reflink>]; Povee et al. [<reflink idref="bib34" id="ref32">34</reflink>]). The method is particularly suitable for people with intellectual disability (Overmars‐Marx et al. [<reflink idref="bib32" id="ref33">32</reflink>]; St. John et al. [<reflink idref="bib37" id="ref34">37</reflink>]). A systematic review by Chinn and Balota ([<reflink idref="bib12" id="ref35">12</reflink>]) about the use of photovoice found that it is a good research method to engage people with intellectual disabilities in knowledge production. It has also been described as a tool to "facilitate the expression and documentation of the views and needs of people with intellectual disabilities" (2008) (p. 3). In this study it was used as a starting point for a conversation.</p> <hd id="AN0184768021-5">Inclusive Research</hd> <p>Working with lived experience researchers was central to this study. Researchers with lived experience of intellectual disability were recruited from the Inclusive Research Network (IRN) to guide the design and implementation of the study. The three lived experience researchers signed up to co‐lead the photovoice training, workshops, and the focus group discussions. They joined three other co‐researchers without lived experience in the design and implementation of the study, as well as the delivery of the photovoice training, ensuring an accessible approach.</p> <hd id="AN0184768021-6">Participants and Recruitment</hd> <p>Recruitment took place between February and April 2023 via four service‐provider organisations (SPOs). To be included in the study, participants needed to be adults with mild to moderate intellectual disability, have an NDIS plan, and provide consent. An easy read participant information statement and an easy read consent form were sent to all SPOs. Participants who had completed phase one interviews (<emph>N</emph> = 62) were invited through the SPO to participate. Not all participants from phase one were interested or willing to take part. Recruitment was extended to other people accessing the services from these SPOs who met the eligibility criteria of having mild/moderate intellectual disability and an NDIS plan.</p> <p>SPOs then organised meeting sessions across four SPO sites with people who were interested in being part of the study. In these sessions, researchers described the purpose of the study and the activities participants were consenting to. They also went over the information in the Easy read participant information statement and consent forms. Before each activity, they were reminded what they were consenting to. For example, consent was reaffirmed before the focus group discussion started, before it was recorded, and finally if they consented for their photos to be part of a broader photo exhibition.</p> <hd id="AN0184768021-7">Session 1—Introduction to Photovoice and Workshop</hd> <p>As indicated, photovoice training was co‐delivered with three members of the IRN who had completed the inclusive train‐the‐trainer training sessions where the team introduced the project and photovoice. This included the ethical considerations in the research process and in taking pictures, as well as the technical use of disposable cameras. Participants were directed not to take photographs of faces to protect privacy unless the person gave written consent to do so. Participants in three of the groups received a disposable camera with the option to take a maximum of 27 pictures. One group decided to use their own mobile phones. Participants were instructed to take photographs of activities outlined in their NDIS plan and of activities they liked doing or would like to do in the future. They were then given two weeks to take the photos. The cameras were returned to the project team, who had the film developed and photos printed. For those who used their mobile phones, photographs were emailed to the project team and printed. Participants kept a copy of all the photos taken and were given a certificate of participation.</p> <hd id="AN0184768021-8">Session 2—Focus Group Discussion (FGD)</hd> <p>Before the FGD participants were asked to choose two photos and to give a name to the photos. These were used as a basis for discussion in each of the four FGDs. Focus groups took place between one and two weeks after printing the photos and between April and May 2023. Each FGD was supported by a member of the research team and/or a support worker. This was followed by a FGD facilitated by two researchers: one who guided the discussion and a second who wrote field notes. The process was flexible to adapt to participants' needs. The whole group was shown each other's photographs on screen. Each person was then asked to respond to a set of questions that were modified to their capacity. The discussion was initially guided by SHOWEd (Wang and Burris [<reflink idref="bib40" id="ref36">40</reflink>]), an approach that uses five questions (see Table 1). However, when SHOWEd proved cumbersome and did not support the discussion, this was either modified or replaced by PHOTO (Hergenrather et al. [<reflink idref="bib21" id="ref37">21</reflink>]) (see Table 1). At the end of each focus group, the participants were asked if they would like their photos to be part of an exhibition, to which they all agreed. The photo exhibition took place in July 2023. The exhibit was displayed at the [remove for peer review]. Visitors could voluntarily comment on the exhibition via post‐it notes.</p> <p>1 TABLE SHOWeD and PHOTO.</p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left">SHOWeD</th><th align="center">PHOTO</th></tr></thead><tbody valign="top"><tr><td align="left">What do you See here?</td><td align="center">"Describe your Picture"</td></tr><tr><td align="left">What is really Happening here?</td><td align="center">"What is Happening in your picture?"</td></tr><tr><td align="left">How does this relate to Our lives?</td><td align="center">"Why did you take a picture Of this?"</td></tr><tr><td align="left">Why does this concern, situation, strength exist?</td><td align="center">"What does this picture Tell us about your life?"</td></tr><tr><td align="left">How can we become Empowered through our new understanding?</td><td align="center">"How can this picture provide Opportunities for us to improve life?"</td></tr><tr><td align="left">What can we Do?</td><td align="center">—</td></tr></tbody></table> </ephtml> </p> <hd id="AN0184768021-9">Data Analysis</hd> <p>Three of the FGDs were digitally recorded and transcribed. One FGD was not recorded as one participant did not agree for it to be recorded. Instead, handwritten notes were taken. Subsequently, all FGD data and field notes were read multiple times and complemented with memos and with notes taken during or immediately after the FGDs. Multiple research team members participated in the analysis and coding of the FGDs and field notes. The analysis involved an iterative mix of deductive and inductive coding. Microsoft Excel 365 was used to facilitate the systematic organisation of codes and themes developed. Thematic analysis (Braun and Clarke [<reflink idref="bib10" id="ref38">10</reflink>]) was used and followed several steps. The first step involved reading the transcripts, field notes, and listing key recurring ideas. In step two, key recurring ideas that came up were formed into codes, and a coding frame was developed. In step three, two researchers independently created draft themes. The last step involved a discussion among research team members to finalise the themes. Selected quotes and photographs are included to illustrate how participants expressed their perspectives. Photos are shared here with permission from the participants.</p> <hd id="AN0184768021-10">Ethical Aspects of the Research</hd> <p>This study received ethical approval from the Human research Ethics Committee of The University of Sydney (Reference 2021/HE000047). Information was provided in multiple formats (easy read, plain English, verbal) and at multiple points (through partner organisations, research team members). The team made it clear that additional communication formats could be used also but none were requested. A system of process consent was used to ensure that participants knew they could opt out at any stage, as well as reinforcing that participation was completely voluntary and in no way impacted on access to services. All participants signed a consent form. The real names of participants were not used, and participants were also asked for consent to use the photograph in the exhibition, future presentations, and publications.</p> <hd id="AN0184768021-11">Results</hd> <p>Eighteen people consented to be part of the study and 17 completed it. One person had to travel overseas and did not take part in the FGD. Four FGDs took place and lasted on average 35 min (Range 30–45 min). The mean age of participants was 46 years (range 18–70 years) and most were females (59%) (see Table 2).</p> <p>2 TABLE Participant characteristics.</p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left">Participant</th><th align="center">Age (years)</th><th align="center">Sex</th><th align="center">FGD</th></tr></thead><tbody valign="top"><tr><td align="left">1</td><td align="center">57</td><td align="center">Male</td><td align="center">1</td></tr><tr><td align="left">2</td><td align="center">44</td><td align="center">Male</td><td align="center">1</td></tr><tr><td align="left">3</td><td align="center">50</td><td align="center">Female</td><td align="center">1</td></tr><tr><td align="left">4</td><td align="center">53</td><td align="center">Male</td><td align="center">1</td></tr><tr><td align="left">5</td><td align="center">57</td><td align="center">Female</td><td align="center">1</td></tr><tr><td align="left">6</td><td align="center">22</td><td align="center">Female</td><td align="center">2</td></tr><tr><td align="left">7</td><td align="center">48</td><td align="center">Female</td><td align="center">2</td></tr><tr><td align="left">8</td><td align="center">27</td><td align="center">Male</td><td align="center">3</td></tr><tr><td align="left">9</td><td align="center">58</td><td align="center">Female</td><td align="center">3</td></tr><tr><td align="left">10</td><td align="center">67</td><td align="center">Female</td><td align="center">3</td></tr><tr><td align="left">11</td><td align="center">23</td><td align="center">Female</td><td align="center">4</td></tr><tr><td align="left">12</td><td align="center">70</td><td align="center">Female</td><td align="center">4</td></tr><tr><td align="left">13</td><td align="center">41</td><td align="center">Female</td><td align="center">4</td></tr><tr><td align="left">14</td><td align="center">32</td><td align="center">Male</td><td align="center">4</td></tr><tr><td align="left">15</td><td align="center">18</td><td align="center">Female</td><td align="center">4</td></tr><tr><td align="left">16</td><td align="center">67</td><td align="center">Male</td><td align="center">4</td></tr><tr><td align="left">17</td><td align="center">50</td><td align="center">Male</td><td align="center">4</td></tr></tbody></table> </ephtml> </p> <p>Data analyses identified three main themes: (<reflink idref="bib1" id="ref39">1</reflink>) Owning the activity versus prescribed activities by the organisation, (<reflink idref="bib2" id="ref40">2</reflink>) not just an activity—the importance of locations and places and (<reflink idref="bib3" id="ref41">3</reflink>) support (see Figure 1).</p> <p> <img src="https://imageserver.ebscohost.com/img/embimages/rdk/E03/01mar25/jar70027-fig-0001.jpg?ephost1=dGJyMNXb4kSepq84yOvqOLCmsE6epq5Srqa4SK6WxWXS" alt="jar70027-fig-0001.jpg" title="1 Themes and subthemes." /> </p> <p></p> <hd id="AN0184768021-13">Theme 1. Owning the Activity Versus Prescribed Activities by the Organisation</hd> <p>In the discussion about the photographic material, most participants enjoyed talking about their <emph>"</emph>activities" their meaning, and how they planned them. The degree to which people 'owned' the activities they engaged in depended on the nature of the decision‐making process described and the level of the participants' involvement in planning the activities. In cases where people arranged their own activities, they often selected these based on their personal values. This meant that the activities aligned with what was personally important to them Figures 2–5.</p> <p> <emph>"...one of my handwritten stories I like, came out of my head because I've read so many books I come up with my own stories. Just myself and my pencils and notepads. That's like me, that's why I read books, just for me"</emph>. [Focus Group 1].</p> <p> <emph>"The beaches are very relaxing for me. So if I get stressed or overwhelmed for everyday life, I go there and it makes me feel at peace"</emph>. [Focus Group 4].</p> <p>The activities described varied (see Table 3), and included self‐directed activities such as writing stories, collecting things, rowing or small activities in the community such as getting coffee, or looking at cars or plants. A small number of participants mentioned the NDIS when describing the activities. "<emph>With my NDIS funding, my coordinator, we take a day program and it's really good. Mainly people there with other intellectual problems, they have cooking, art, I do crosswords, they gave me a big collection of crossword books and whatever else, activities we do after cooking."</emph> [Focus Group 1].</p> <p>For one of these participants the activity they enjoyed was not included in their NDIS plans. <emph>"No, no, my in‐laws do all that [NDIS Planning]." "Because I would love to have [the NDIS] help me learn how to swim." "Yeah, I was doing aqua aerobics, but because it was a group setting it didn't really work for me."</emph> [Focus Group 2].</p> <p>3 TABLE Example of activities described/photographed by participants.</p> <p> <ephtml> <table><thead valign="bottom"><tr><th align="left">Owning the activity</th><th align="center">Prescribed activities by organisations</th></tr></thead><tbody valign="top"><tr><td align="left">Writing own stories</td><td align="center">Organised craft activities (e.g., mask making, painting, weaving)</td></tr><tr><td align="left">Making a mancave in the house</td><td align="center">Dancing (e.g., ballroom, Zumba)</td></tr><tr><td align="left">Participating in rowing competitions</td><td align="center" /></tr><tr><td align="left">Travelling to visit family</td><td align="center" /></tr><tr><td align="left">Working on their carTravelling/holidaysLearning a new thing (e.g., Sign Language, Design software)</td><td align="center" /></tr></tbody></table> </ephtml> </p> <p>When individuals participated in prescribed activities these were mainly arts and crafts. Participants mentioned they enjoyed them, but they were not connected to their personal choices, or the activities only became something they valued after being expected to engage with them. This is illustrated by an account from one of the participants about being part of a mask making class. <emph>"No, I haven't made it before. It's new. I never done it before. I'm learning. It's [B] and we were doing face masks. I like that. Yeah"</emph> [Focus Group 4] (Figure 2).</p> <p> <img src="https://imageserver.ebscohost.com/img/embimages/rdk/E03/01mar25/jar70027-fig-0002.jpg?ephost1=dGJyMNXb4kSepq84yOvqOLCmsE6epq5Srqa4SK6WxWXS" alt="jar70027-fig-0002.jpg" title="2 "Doing a mask." [used with permission]." /> </p> <p></p> <p>"<emph>This is how it works, making bags, weaving, bee wax wraps and sewing. I've been involved for long</emph>." (Photo of weaving) [Focus Group 3].</p> <p>People either chose to share photos of something that had a meaning to them that they had taken but were not in, or photos of them doing something that they had requested a supporter to take. There was clear differentiation between enjoying something that was offered and choosing what you want to do or enjoy. In a couple of instances, the activities described involved education and long‐term plans, as illustrated by these quotes.</p> <p> <emph>"I love—yeah, I want to keep doing photography." Go to a photography course</emph>. [Focus Group 2].</p> <p> <emph>"This is something I want to do professionally</emph>.<emph>"</emph> [Focus Group 3].</p> <p>In some instances, decisions about what people do were still made by others. This is exemplified by a photo of a participant dancing Zumba. During the FGD it was unclear if they choose the photo to be specifically taken. When asked if they liked going to dance classes they mentioned <emph>"My parents take me there because they think it's fun"</emph> [Focus Group 4]. (Photo of person in Zumba class).</p> <hd id="AN0184768021-15">Theme 2. Not Just an Activity—The Importance of Locations and Places</hd> <p>Many participants took photos of locations rather than activities. In these cases, the locations they photographed represented their identity, or something that was personally meaningful to them. <emph>"I like it because you can actually see other – because you can see the rocks, the ocean, the rifle range, and the beach, and then the clouds"</emph>. [Focus Group 4].</p> <p>Some took photos of spaces in their home, which they had decorated in line with their interests and activities they enjoyed. These participants were often proud of the spaces they had made and linked these to their personal identity. For example, one participant mentioned: "<emph>My man cave"..."Mainly just for me."</emph> [Focus Group 1].</p> <p>Some people took photos of their day‐to‐day life for example, their home and their family, and others of more occasional things (like holidays). <emph>"Family means everything to me, in the Māori world, family always are together, especially in New Zealand."</emph> [Focus Group 1]. While another participant described <emph>"That's Dreamworld. I took a photo of the rollercoaster, yeah."</emph> [Focus Group 1].</p> <p>Some individuals photographed objects, either because they enjoy collecting these, or because they represent an element of their identity (e.g., an achievement, skill, family history, or interest). "<emph>A photo of a favourite of my—my favourite bird Budda, the Major Mitchell"</emph> [Focus Group 1].</p> <p>The smaller day‐to‐day activities that individuals valued highly were often not included in their plans; for example, their morning coffee after staying up late reading. This was particularly hard when there was high staff turnover, as new staff were not aware of these small things. In addition to choosing which activities to engage in, it was also important for people to feel a sense of independence in the completion of the activity, as this increased the activity's experienced value and individuals' sense of control.</p> <p> <emph>"Learning Australian language... I had a speech therapy called [name] and she does special needs with sign language"</emph>. [Focus Group 4].</p> <hd id="AN0184768021-16">Theme 3. Support</hd> <p>Many people took photos of things they did independently. Those who required support often focused on the part of the activity that they did independently, which suggests that a sense of personal agency and achievement is key to making activities meaningful. People were open to support, and a range of support was identified covering family, staff, mentors, and disability support workers. The level of support varied. One of the participants told the group that they [with their support worker] were very happy to visit the zoo. It was their first time at the zoo and something they really enjoyed (Figure 3).</p> <p> <img src="https://imageserver.ebscohost.com/img/embimages/rdk/E03/01mar25/jar70027-fig-0003.jpg?ephost1=dGJyMNXb4kSepq84yOvqOLCmsE6epq5Srqa4SK6WxWXS" alt="jar70027-fig-0003.jpg" title="3 My gorilla friend [used with permission]." /> </p> <p></p> <p>This is also exemplified by another participant who shared a photo of a beach. <emph>"I like Bare Island, because it's part of La Perouse beach. Yeah, I really enjoy going there. Sometimes my supports, my care person, if I say to her or him can I please drive to the beach, because in my—part of my [NDIS] package, it says that I like to go to the beaches and look at the beaches. So, yeah. The beaches are very relaxing for me. So, if I get stressed or overwhelmed for everyday life, I go there and it makes me feel at peace"</emph> [Focus Group 4] (Figure 4).</p> <p> <img src="https://imageserver.ebscohost.com/img/embimages/rdk/E03/01mar25/jar70027-fig-0004.jpg?ephost1=dGJyMNXb4kSepq84yOvqOLCmsE6epq5Srqa4SK6WxWXS" alt="jar70027-fig-0004.jpg" title="4 Bare Island, La Perouse [used with permission]." /> </p> <p></p> <p>The photovoice training had explained that participants could receive support to take the photos, but the person should choose what is being photographed. In some cases, it was clear that the photo was taken either by the participant or by someone else, directed by the participant, for example in cases where the participant was in the photo. Where participants had ownership of the photos (i.e., chose the photos), there was more variety in the subject matter (some of organised activities, and some of the participants' homes, things they like outside in the community, family, things they have made or collected etc).</p> <p>However, for some participants, the support staff chose the photos on their behalf. In those instances, it was difficult to identify the degree of ownership participants had over the photos chosen. In cases where ownership of the photos was less clear, they were often taken during organised group activities.</p> <p>Some participants explained that support people were not always supportive of the collection of important objects (e.g., tried to remove them rather than finding a way to accommodate them in the individual's home).</p> <p> <emph>"You can see the books, yeah. My big library, that's my bedroom. I've got more books in my lounge room and kitchen. I remember some support workers had issues, that's why they chucked out [the book]—I get myself books, we have to ring up, stop them. I complained and now they leave me alone"</emph> [Focus Group 1] (Figure 5).</p> <p> <img src="https://imageserver.ebscohost.com/img/embimages/rdk/E03/01mar25/jar70027-fig-0005.jpg?ephost1=dGJyMNXb4kSepq84yOvqOLCmsE6epq5Srqa4SK6WxWXS" alt="jar70027-fig-0005.jpg" title="5 Bibliomania house [used with permission]." /> </p> <p></p> <p>Level of support also varied during the FGDs. When participants independently discussed the stories behind their photos, they spoke about a range of things that are important to them and that they like to do. At times, support staff present during the FGDs would contribute to the discussion by reminding participants about activities organised by the organisation ("What about X?"). This usually took place when participants did not mention organised activities during their discussion of what they like to do, and instead spoke about self‐organised things. In one case, staff from an organisation took an active role in the FGD (rather than sitting in as support). Here, the discussions focussed mostly on the organisations structured activities, suggesting less freedom/control of the participants over the conversation to speak about what they found most important.</p> <hd id="AN0184768021-20">Exhibit</hd> <p>Participants, staff from the partner organisations and general public were invited to the exhibit. Several people who attended provided comments at the exhibit via a board where people could place post its. General feedback was positive and focused on how much can be learned about peoples' lives and the importance of knowing what people love and give value to. One visitor wrote: "What a wonderful display of people's perspective of their life, telling us who they are. It is great and inspiring, makes me aware that I should do more things like that as well, very creative!"</p> <p>Some people suggested that photos perhaps could be used in the NDIS planning process. Some perceived that the photos gave people a voice. A couple of comments also stated they were 'inspiring'. The fact that people refer to people with intellectual disability doing things they want as 'inspiring' could be interpreted as low expectations from the general public regarding what people are able to do.</p> <hd id="AN0184768021-21">Discussion</hd> <p>This study aimed to evaluate the everyday ways that individuals with mild and moderate intellectual disability who have NDIS plans exercise choice and control. Most participants in the study seemed to have at least some level of choice and control over their lives, as reflected by the images and the stories. The narratives and choice of photos illustrated that participants experience satisfaction with their own lives when they can choose.</p> <p>Choice and control is not just about activities, but about how participants can live their lives more broadly. Where participants were able to exercise self‐determination, including choice making, problem solving, and decision‐making as well as the ability to self‐advocate (Wehmeyer [<reflink idref="bib43" id="ref42">43</reflink>]; Wehmeyer and Garner [<reflink idref="bib44" id="ref43">44</reflink>]), they selected or created activities guided by their interests. While some people directed the activity they had chosen, others appeared to have been restricted to activities planned and organised by the service organisations. It is interesting to note that activities provided by the service organisations focused mainly on arts and crafts, and while these can be good activities, it negates the existence of other activities that can promote or contribute to wellbeing. As noted by Finlay et al. ([<reflink idref="bib18" id="ref44">18</reflink>]) opportunities for people to exercise choice or control could be missed when routines and patterns of interactions are established. Participants still enjoyed these activities, but the absence of the opportunity for self‐determination in daily living made the activities less meaningful and indicated they were more of a pastime/entertainment.</p> <p>The three levels of staff support that were identified were on a continuum from 'doing with' to 'doing for': first, participants choosing independently without input; participants being prompted by their support persons; or actively choosing on their behalf. At the second and third levels, it seems that support people may be coming from a place of wanting to 'care for' participants and take control (with well‐meaning intention), rather than providing them with support to build their own capacity to live their lives as they wish.</p> <p>The 'doing for' support is aligned with the old block‐funding model, whereby support organisations were in control and created the things that participants could 'choose' between. On the other hand, the 'doing with' support seems to offer a genuine version of choice and control, where staff provide the minimum help required for participants to make their own decisions (based on their values, rather than based on the options offered), hence building capacity for participants to take control over their everyday lives and not be restricted to organised activities on offer. Research by Bigby et al. ([<reflink idref="bib8" id="ref45">8</reflink>]) has highlighted the importance of good active support that allows people to be engaged and have community participation. A systematic review on decision support for adults with intellectual disabilities found that there are different perceptions and experiences of support in everyday decision‐making. "Supporters" also adopt a variety of approaches and techniques to facilitate it. There are also different barriers and enablers to implement it (Casey et al. [<reflink idref="bib11" id="ref46">11</reflink>]).</p> <p>This difference is important, as it establishes whether the activities participants engaged in were transformational (moving them closer towards their goals and allowing them to do what is important to them) or transactional (doing for the sake of doing and passing the time), such as arts and crafts and scheduled activities.</p> <p>The variability of the extent to which participants were able to exercise self‐determination and genuine choice and control may stem from variable interpretations of the meaning of these concepts. Stancliffe ([<reflink idref="bib38" id="ref47">38</reflink>]) notes that there are various perspectives taken on the meaning of self‐determination for people with intellectual disability, and that there is variability in the components of self‐determination on which emphasis is placed. Bannerman et al. ([<reflink idref="bib2" id="ref48">2</reflink>]), as mentioned in Stancliffe ([<reflink idref="bib38" id="ref49">38</reflink>]) defines choice as the opportunity to choose freely between a number of pre‐determined options. This limited version of choice is seen where participants are allowed to choose between activities on offer with service organisations. However, the concept of choice can encompass the experience of autonomy in small everyday matters (what to wear or eat) and in large, life‐defining matters (what sort of work to do or where to live or with whom) (O'Brien and O'Brien [<reflink idref="bib30" id="ref50">30</reflink>]). Our photovoice results indicate that participants had some autonomy over various small everyday choices, but there were no examples of more consequential matters such as choosing where to live or work or choosing support personnel.</p> <p>Another contributing factor may be the assumption that people with intellectual disabilities are not capable of having core values and having a deep sense of identity. Stancliffe ([<reflink idref="bib38" id="ref51">38</reflink>]) noted a range of personal and environmental characteristics that may be required to facilitate the ability of individuals to engage in self‐determination behaviour. Another possible reason is that a large percentage of NDIS plans/goals are used to note the supports required for basic daily living, and that organising these leaves limited time to consider self‐determination. NDIS participants and their families/supporters often find the process of organising and implementing NDIS plans exhausting and draining (Veli‐Gold et al. [<reflink idref="bib39" id="ref52">39</reflink>]). This may mean that only limited energy is used to explore deeply from the participants' perspectives their life dreams and goals. Hence, strengths and more meaningful life goals may be unintentionally ignored, due to the necessity of focusing on basic support, to ensure that necessary services will remain available to the participant (Veli‐Gold et al. [<reflink idref="bib39" id="ref53">39</reflink>]).</p> <p>Previous research of people with disability in supported living has described how the opinion about peoples' capacity for autonomy by professionals who support them determines the degree of control people with intellectual disability exercise (Bigby et al. [<reflink idref="bib7" id="ref54">7</reflink>]; Pallisera et al. [<reflink idref="bib33" id="ref55">33</reflink>]). Even in situations where supporters are attempting to promote empowerment for people with intellectual disability, parents, support workers and organisations "steered" people's choices (Finlay et al. [<reflink idref="bib18" id="ref56">18</reflink>]; Social Exclusion Unit [<reflink idref="bib35" id="ref57">35</reflink>]).</p> <p>Time should be taken to speak with NDIS participants at length, to figure out what is meaningful for them in their life. There should be a focus on deeper meaning (e.g., what makes up their personal identity, and what are their core interests and values). Multiple forms of communication should be valued and included in the planning process to enable the person with intellectual disability to have true voice. This information can then be used to offer the support needed to fulfil related goals. For those with a better understanding of their own NDIS plan, activities and spaces were more aligned with their true goals/things they found meaningful. Care should be taken to explain the purpose of the NDIS, so that participants are equipped with the knowledge they need to make decisions. Organisations that offer support can work towards offering more individualised support for everyday and key life domains, either instead of or in addition to offering a limited range of group activities. This support should be in the context of building capacity, so that individuals become more confident and capable in pursuing what is personally meaningful for them, rather than keeping them entertained. Future research should explore what support staff consider to be the meaning of 'choice and control', and how do they go about offering it.</p> <hd id="AN0184768021-22">Future Research</hd> <p>The influence staff and family exerted on participants choices was also evident. This is highly significant in light of findings reported on the key role that networks and relationships can play in individualised assessment planning and funding of supports. If people with intellectual disability are to be truly empowered to develop and exert greater autonomy over everyday and key life decisions, then further work is needed to educate and build the skill and competence of support personnel to understand and facilitate this, and not just concentrate on developing self‐determination skills among persons with intellectual disability alone.</p> <hd id="AN0184768021-23">Limitations</hd> <p>One of the limitations of this study is that participants were recruited by service organisations. Hence, these are people who are already receiving services. The study sought to recruit a diverse sample of people with intellectual disability. However, despite the differing sizes and geographic locations of provider partner organisations, the sample was predominantly of people who were not from a culturally and linguistically diverse (CALD) background, and none of the participants identified as Indigenous or First Nations. This could be a reflection also of the additional barriers that these groups face in accessing the NDIS. Having an NDIS plan was a central inclusion criterion.</p> <hd id="AN0184768021-24">Conclusions</hd> <p>Affording people with disabilities more choice and control over their lives is a core tenet of the NDIS in Australia. Despite people with intellectual disabilities being one of the largest groups represented in the NDIS programme, very few studies have included the voice of people with intellectual disabilities to truly understand their experiences. This study highlighted both how people with intellectual disabilities can be involved as researchers as well as how photographs and focus groups can be valuable ways to elicit and understand the impact of the NDIS on the everyday experiences of people with the lived experience of intellectual disability. Though participants were demonstrating everyday choice in their lives, the extent to which choice was available varied. In addition, the nature of the activities people could choose from ranged from transactional to transformational, thus highlighting the disparity of experience.</p> <hd id="AN0184768021-25">Author Contributions</hd> <p>P.O., T.P., V.R. and M.O. conceived the study and the design. G.G., C.G. and P.O. collected and analysed the data. All authors discussed the results and contributed to the final manuscript.</p> <hd id="AN0184768021-26">Acknowledgements</hd> <p>Research for this paper was supported by a grant from by a Linkage Grant from the Australian Research Council (LP190101011). The funders had no role in the design of the study, the data collection and the data analysis, the decision to publish, or preparation of the manuscript. We thank the participants and the service providers that assisted the process. We also want to express our sincere gratitude to the participants and organisations. Open access publishing facilitated by The University of Sydney, as part of the Wiley ‐ The University of Sydney agreement via the Council of Australian University Librarians.</p> <hd id="AN0184768021-27">Ethics Statement</hd> <p>Ethical approval was received by the Human research Ethics Committee of the University of Sydney. Easy read versions of the participant information statement and consent forms were provided to the participants. All participants signed a consent form.</p> <hd id="AN0184768021-28">Conflicts of Interest</hd> <p>The authors declare no conflicts of interest.</p> <hd id="AN0184768021-29">Data Availability Statement</hd> <p>The data that support the findings of this study are available on request from the corresponding author. 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Exceptionality 15, no. 1 : 1 – 2.</bibtext> </blist> </ref> <aug> <p>By Gisselle Gallego; Patricia O'Brien; Clara Goossens; Trevor Parmenter; Vivienne Riches and Mary‐Ann O'Donovan</p> <p>Reported by Author; Author; Author; Author; Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib20" firstref="ref1"></nolink> <nolink nlid="nl2" bibid="bib24" firstref="ref2"></nolink> <nolink nlid="nl3" bibid="bib39" firstref="ref3"></nolink> <nolink nlid="nl4" bibid="bib26" firstref="ref5"></nolink> <nolink nlid="nl5" bibid="bib23" firstref="ref7"></nolink> <nolink nlid="nl6" bibid="bib19" firstref="ref8"></nolink> <nolink nlid="nl7" bibid="bib17" firstref="ref10"></nolink> <nolink nlid="nl8" bibid="bib29" firstref="ref11"></nolink> <nolink nlid="nl9" bibid="bib45" firstref="ref12"></nolink> <nolink nlid="nl10" bibid="bib42" firstref="ref13"></nolink> <nolink nlid="nl11" bibid="bib27" firstref="ref14"></nolink> <nolink nlid="nl12" bibid="bib25" firstref="ref16"></nolink> <nolink nlid="nl13" bibid="bib41" firstref="ref17"></nolink> <nolink nlid="nl14" bibid="bib14" firstref="ref21"></nolink> <nolink nlid="nl15" bibid="bib15" firstref="ref22"></nolink> <nolink nlid="nl16" bibid="bib16" firstref="ref23"></nolink> <nolink nlid="nl17" bibid="bib31" firstref="ref24"></nolink> <nolink nlid="nl18" bibid="bib36" firstref="ref25"></nolink> <nolink nlid="nl19" bibid="bib28" firstref="ref26"></nolink> <nolink nlid="nl20" bibid="bib40" firstref="ref29"></nolink> <nolink nlid="nl21" bibid="bib22" firstref="ref30"></nolink> <nolink nlid="nl22" bibid="bib13" firstref="ref31"></nolink> <nolink nlid="nl23" bibid="bib34" firstref="ref32"></nolink> <nolink nlid="nl24" bibid="bib32" firstref="ref33"></nolink> <nolink nlid="nl25" bibid="bib37" firstref="ref34"></nolink> <nolink nlid="nl26" bibid="bib12" firstref="ref35"></nolink> <nolink nlid="nl27" bibid="bib21" firstref="ref37"></nolink> <nolink nlid="nl28" bibid="bib10" firstref="ref38"></nolink> <nolink nlid="nl29" bibid="bib43" firstref="ref42"></nolink> <nolink nlid="nl30" bibid="bib44" firstref="ref43"></nolink> <nolink nlid="nl31" bibid="bib18" firstref="ref44"></nolink> <nolink nlid="nl32" bibid="bib11" firstref="ref46"></nolink> <nolink nlid="nl33" bibid="bib38" firstref="ref47"></nolink> <nolink nlid="nl34" bibid="bib30" firstref="ref50"></nolink> <nolink nlid="nl35" bibid="bib33" firstref="ref55"></nolink> <nolink nlid="nl36" bibid="bib35" firstref="ref57"></nolink>
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  Label: Title
  Group: Ti
  Data: My Life: A Photovoice Exploration of Aspirations of People with Intellectual Disabilities
– Name: Language
  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Gisselle+Gallego%22">Gisselle Gallego</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-3243-8176">0000-0002-3243-8176</externalLink>)<br /><searchLink fieldCode="AR" term="%22Patricia+O'Brien%22">Patricia O'Brien</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-6890-2447">0000-0001-6890-2447</externalLink>)<br /><searchLink fieldCode="AR" term="%22Clara+Goossens%22">Clara Goossens</searchLink> (ORCID <externalLink term="https://orcid.org/0009-0001-0983-8593">0009-0001-0983-8593</externalLink>)<br /><searchLink fieldCode="AR" term="%22Trevor+Parmenter%22">Trevor Parmenter</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-8297-8488">0000-0002-8297-8488</externalLink>)<br /><searchLink fieldCode="AR" term="%22Vivienne+Riches%22">Vivienne Riches</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-0317-4490">0000-0002-0317-4490</externalLink>)<br /><searchLink fieldCode="AR" term="%22Mary-Ann+O'Donovan%22">Mary-Ann O'Donovan</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-3378-5305">0000-0002-3378-5305</externalLink>)
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22"><i>Journal of Applied Research in Intellectual Disabilities</i></searchLink>. 2025 38(2).
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  Label: Availability
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  Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
– Name: PeerReviewed
  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 12
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2025
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Mild+Intellectual+Disability%22">Mild Intellectual Disability</searchLink><br /><searchLink fieldCode="DE" term="%22Moderate+Intellectual+Disability%22">Moderate Intellectual Disability</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Aspiration%22">Aspiration</searchLink><br /><searchLink fieldCode="DE" term="%22Photography%22">Photography</searchLink><br /><searchLink fieldCode="DE" term="%22Self+Determination%22">Self Determination</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Activities%22">Activities</searchLink><br /><searchLink fieldCode="DE" term="%22Needs%22">Needs</searchLink>
– Name: Subject
  Label: Geographic Terms
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Australia%22">Australia</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1111/jar.70027
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1360-2322<br />1468-3148
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: This study aimed to evaluate the everyday ways that individuals with mild and moderate intellectual disabilities exercise choice and control. Method: Photovoice with 17 adults with mild to moderate intellectual disability who were receiving individual funding was conducted. Focus groups were held to review the photos. Findings: While some participants directed the activity they had chosen, others appeared to have been restricted to activities planned and organised by the service provider. Many participants took photos of locations rather than activities. In these cases, the locations they photographed represented their identity or something that was personally meaningful to them. This illustrated the individuals' power to create spaces and/or travel to places that are important to them. Conclusions: It is important to understand how certain activities facilitate choice and control. A critical examination of real choice compared with generic activities framed as choice continues to be needed.
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  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2025
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1468919
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1468919
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1111/jar.70027
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 12
    Subjects:
      – SubjectFull: Mild Intellectual Disability
        Type: general
      – SubjectFull: Moderate Intellectual Disability
        Type: general
      – SubjectFull: Adults
        Type: general
      – SubjectFull: Aspiration
        Type: general
      – SubjectFull: Photography
        Type: general
      – SubjectFull: Self Determination
        Type: general
      – SubjectFull: Foreign Countries
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      – SubjectFull: Activities
        Type: general
      – SubjectFull: Needs
        Type: general
      – SubjectFull: Australia
        Type: general
    Titles:
      – TitleFull: My Life: A Photovoice Exploration of Aspirations of People with Intellectual Disabilities
        Type: main
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      – PersonEntity:
          Name:
            NameFull: Gisselle Gallego
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            NameFull: Patricia O'Brien
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            NameFull: Clara Goossens
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            NameFull: Trevor Parmenter
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            NameFull: Vivienne Riches
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            NameFull: Mary-Ann O'Donovan
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            – D: 01
              M: 03
              Type: published
              Y: 2025
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              Value: 1360-2322
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              Value: 1468-3148
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              Value: 38
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              Value: 2
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            – TitleFull: Journal of Applied Research in Intellectual Disabilities
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