Participation Opportunities for Adults With Intellectual Disabilities Provided by Disability Services in One Australian State

Participation Opportunities for Adults WithIntellectual Disabilities Provided by DisabilityServices in One Australian Statejppi_307 172..182

Lesley Chenoweth and Natalie ClementsGriffith University, Meadowbrook, QLD, Australia

Abstract The participation of service users in the planning and delivery of disability services is an unequivocal ideal in manycountries. However, making the shift from espoused ideals of participation to effective, credible involvement of people with disabilityand families in agency planning and delivery is often challenging and not fully realized. The authors undertook a study to discern thenature and extent of service user participation opportunities within a range of organizations that provide disability services in oneAustralian state. A “snapshot” of how services are involving service users and their families, carers, and advocates in all aspects of theirservice, including service planning, development, and delivery, was obtained via a mailed survey instrument. Some 200 agencies orservices receiving funding from the state government participated in the survey. Findings reveal that service providers overall areproviding a broad range of opportunities and activities for service user participation in the service, but their effectiveness is variableacross different organizations and subject to differing conditions. The authors concluded that characteristics of the service, thecommunity, and the service users and their families, carers, and advocates, all influence the dynamic environment for participation.

Keywords: consultation, consumer involvement, intellectual disabilities, service participation, service planning, serviceprovision

INTRODUCTION

Over the past 25 years, a new rhetoric relating to improvingquality has gained political priority in health and social care(Beresford & Branfield, 2006). The requirement for the involve-ment by service users in social care services has increased as partof this shift of a greater focus on quality assurance (Carr, 2004).Service user participation in service planning, development, anddelivery is seen as a benefit to all who participate in terms of skills,experience, and fulfillment (McGlaughlin, Gorfin, & Saul, 2004).Edwards and Staniszewska (2000) argue that giving voice tolargely unheard service users empowers them through the expres-sion of their own needs and that their involvement is essentialto delivering high-quality services as well as in developing moreappropriate supports.

However, negative assessments of service user participationacross health and social care have generally supported the con-clusion that there is a lack of research, monitoring, and evaluationon the impact and outcomes of service user participation ingeneral (Carr, 2004). A review of service user participation by

Doel et al. (2007) found that there was little systematic evaluationof what difference service user participation makes. Monitoringimpact and auditing change as a result of service user participa-tion does not appear to be recognized as an integral part of thewhole participation process (Carr, 2004). Doel et al. (2007) notedthat participation is as integral as breathing for many organiza-tions that are led by service users and carers, so it can be hard toknow what aspects to evaluate.

However, there is agreement on the need for a range of modelsof involvement depending on the level of activity that partici-pants wish to commit to (Carr, 2004; Janzon & Law, 2003). Thereis no single solution or technique for enabling service users toparticipate in service and policy planning and development; thismeans that service user involvement needs to move away frompurely consultation-based methods toward a wider range ofvarying forms of participation (Janzon & Law, 2003). It has alsobeen emphasized that participation needs to be appropriate to itscontext and to take account of the issues involved, the objectivessought, and the people who make up the target group (Carr, 2004;Danso et al., 2003; Franklin & Sloper, 2006).

A review of the involvement of individuals with disabilitieswho were also service users found that their time spent in evalu-ation of participation processes was inadequate as there was toolittle time allocated for meaningful discussions (Barnes, Mercer,& Din, 2003). Seemingly, the pace and volume of work had tobe appropriate for the service user’s full involvement to occur,

Received April 13, 2010; accepted June 28, 2011Correspondence: Lesley Chenoweth, Griffith Institute for Health & MedicalResearch, Griffith University, University Drive, Meadowbrook,QLD 4131, Australia. Tel: +61 7 33821005; Fax: +61 7 33821210;E-mail: [email protected]

Journal of Policy and Practice in Intellectual DisabilitiesVolume 8 Number 3 pp 172–182 September 2011

© 2011 International Association for the Scientific Study of Intellectual Disabilities and Wiley Periodicals, Inc.

but this was particularly difficult when the “social care” environ-ment is subject to tight budgetary controls (Barnes et al., 2003;Williams, 2003).

Overall, there appears to be limited guidance, tools, andknowledge about how services and organizations can review theoutcomes of participation (Wright, Turner, Clay, & Mills, 2006).However, Crawford et al. (2002) have pointed out that the ulti-mate goal of service user participation should be the promotionof service user health, quality of life, and an overall user satisfac-tion with services.

BARRIERS AND ENABLERS TO SERVICEUSER PARTICIPATION

Various barriers and enablers of service user participationhave been identified in the literature, largely related to features ofthe service provider organizations and service systems. One maybe the perception by staff and management that the presence of asevere disabling condition in an individual precludes meaningfulparticipation (Sanderson, 2001; Wehmeyer & Ward, 1995), andanother is that some staff members lack the skills to know howto involve their clients (Centre for Developmental DisabilityStudies, 2004; Reid & Green, 2002; Smull & Lakin, 2002). Forexample, staff often relies too heavily on verbal communication,overestimating the receptive language ability of clients with severeintellectual disability (Mansell & Beadle-Brown, 2004). Yet, as hasbeen shown by a study conducted by McGlaughlin et al. (2004),adults with intellectual disabilities when asked to articulate theirown needs in relation to housing clearly were able to verbalizetheir preferences as well as to think through potential options.

A third barrier sometimes evident is that service cultures canpromote dependence, limit choice making opportunities, andstifle self-determination and involvement (Wehmeyer & Ward,1995). Such limiting participation processes may serve an orga-nizational purpose for some services such that individuals are notintended to be involved in any meaningful way (Carnaby, 1997;Edwards & Staniszewska, 2000). If inquiries as to the opinions ofservice users are occurring as part of a quality assurance process,issues of control may be raised. If the aim is genuinely to try toinvolve service users in defining the organization’s practices, thenit is important to use methodologies that give voice to users andallow them some scope to lead agendas for change rather thanbeing restricted to providing data for provider-led agendas (Clare& Cox, 2003; Olsen, Parker, & Drewett, 1997).

A fourth barrier that may be evident is inadequate support,training, and resourcing of consumer and carer participation,perhaps, reflecting a lack of commitment to participation by theorganization’s management. Resource allocation and utilizationmay be counterproductive in enabling services, staff, clients, andtheir families to effectively engage in participation processes(Mental Health Council of Australia and Craze Lateral Solutions,2004). Finally, a barrier may be evident when service providersweigh the demands of their participation processes on budgetsagainst the demands that come from delivering the services.These concerns often lead to participation being marginalized bymany providers as an “extra” that can be added to (or taken awayfrom) existing decision-making processes.

There are also barriers to effective service user participationthat stem from the perceptions of service users. Constraintsresulting from resource allocation and utilization may becounterproductive in enabling services, staff, clients, and theirfamilies to effectively engage in participation processes (Birchall& Simmons, 2004). The nonpayment and reimbursement of con-sumer and care representatives results in consumers and carersnot being able to participate in their services or only able toparticipate at significant personal cost (Mental Health Council ofAustralia and Craze Lateral Solutions, 2004). Living in rural orcertain geographic areas can have a bearing on exclusion fromstructures for participation (Carr, 2004). Time constraints canalso affect individual’s initial decisions to participate (Birchall &Simmons, 2004). The workload and expectations experienced byservice users and their family members as a result of representa-tive and participatory responsibilities can be high (Mental HealthCouncil of Australia and Craze Lateral Solutions, 2004). The typeof decision making required can also be too stressful and complexfor some individuals (Carnaby, 1997; Centre for DevelopmentalDisability Studies, 2004). There can also be the risk of “involve-ment fatigue” for service users who are involved with too manyconsultation initiatives that appear to have little impact on servicestandards or profiles (Barnes et al., 2003).

A number of suggestions for how organizations can improveand enhance service user involvement have also been identified inthe literature. These include strategies to improve communica-tion with service users (Centre for Developmental DisabilityStudies, 2004; Ciulla Timmons & Whitney-Thomas, 1998), allo-cate funds and resources specifically to support user participation(Carr, 2004; Mental Health Council of Australia and Craze LateralSolutions, 2004), and the staff undertaking such processes (Craw-ford, Rutter, & Thelwall, 2003; Young & Chesson, 2006), families(Centre for Developmental Disability Studies, 2004), a clearpurpose for the consultations that are linked to actions (Olsenet al., 1997), and provide feedback to users (Carr, 2004; Crawfordet al., 2003; Doel et al., 2007). In the Australian situation, it hasalso been suggested that bringing in paid consumer and carerconsultants, including indigenous and rural and remote con-sumers (Mental Health Council of Australia and Craze LateralSolutions, 2004), would be an important enabler.

The perception that there are “good opportunities” to partici-pate is fundamental to the success of participation initiatives.Different service users can consider a variety of types of oppor-tunities to be relevant, timely, and attractive (Birchall &Simmons, 2004). The majority of service users seem to want torepresent themselves directly, collectively, or through a peer advo-cate in decision-making forums. The less favored approach ishaving input mediated through external consultation exercisesand questionnaires that could be vulnerable to differing interpre-tations (Carr, 2004). However, confidence and skills are needed byservice users in order to participate (Birchall & Simmons, 2004).Organizations might need to look at the extent to which serviceusers think there is a “high cost” of participation in terms of timeand to provide some “low cost” alternatives (e.g., telephone orInternet voting) as a point of entry (Birchall & Simmons, 2004).

Meaningful participation can be seen as a process not simplyas an isolated activity or event (Kirby, Lanyon, Cronin, & Sinclair,2003). It has been proposed that embedded, continuous, butvaried, participation approaches, which engage service users as

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partners in decision making, seem to have the most potential forinfluencing change (Carr, 2004). Further, Birchall and Simmons(2004) have proposed that for organizations to maximize partici-pation by service users, the right combination of factors needs tobe achieved as well as ensuring that the connections between thefactors are maintained. For example, they noted, there is no pointin training people in the necessary skills unless appropriateopportunities are going to be provided to use those skills.

Thus, while there have been proposals on how to decreasebarriers and increase participation, little has been studied specifi-cally as to extent the participation of people with intellectualdisabilities in service planning and delivery. Consequently, thisstudy was undertaken in order to obtain feedback from serviceagencies about their current capacities and practices with respectto service user participation in decision making. This study waspart of a larger project on service user participation conducted bythe funding agency in one state of Australia, which aimed at thefollowing: (1) provide a “snapshot” of the current capacity andcapability of organizations for service user participation; (2)enable the development of an evidence base for effective serviceuser participation; (3) inform the potential development ofsupports designed to strengthen a sector-wide environment forparticipation; and (4) disseminate the findings from the analysisto support organizations in building an environment for fullerparticipation.

METHODOLOGY

Participants

All 248 state-funded specialist services for people with dis-abilities and their families in the Australian state of Queenslandwere included in the study. The services included such provisionas accommodation support, respite, communication support,community access, advocacy, information services, othersupport, and combinations of these. Employment serviceswere not included in this study as they do not receive fundingfrom the state government. “Services users” were defined as anyperson with a disability receiving a state-funded service. Inclu-sion criteria for service users with a disability involved anyonemeeting the state’s definition, that is, “a person’s disability mustbe due to an intellectual, psychiatric, cognitive (including bothcongenital and acquired impairments), neurological, sensory orphysical impairment or a combination of impairments; and bepermanent or likely to be permanent; and the disability results insubstantial reduction in capacity for communication, socialinteraction, learning, mobility or self-care and management; anda need for support and the disability manifests itself before theage of 65.”

The overall target group included people with intellectualand developmental disabilities as well as people with physicaldisabilities, with sensory impairments, and with psychiatricdisabilities (this latter group included those individuals withongoing chronic mental health issues having an impact on dailyliving over the long term). Approximately 53% of the populationwas identified as having an intellectual disability, autism, oracquired brain injury as their primary disability.

Instrument

The study used the Service User Participation Snapshot(Queensland Government, n.d.), a survey instrument designedto identify current activities related to service user engagementand participation with the organizations in the state. The surveyis structured around three areas of participation: (1) engagement;(2) service planning; and (3) service development and delivery.It elaborates on roles, opportunities and activities, communica-tion and information methods, and evaluation within the threeareas. Table 1 provides an outline of the structure, questions, andelements of the survey. The survey instrument was designed topermit written comments and explanations, and hence manyof the data are qualitative. Quantitative data presented wereapproximated from the completed surveys and comments.Analysis of the qualitative data was facilitated by usingNvivo software (QSR International, Doncaster, Australia). Copiesof the survey instrument are available from http://www.communities.qld.gov.au/disability/key-projects/disability-sector-quality-system/publications-tools-and-resources/tools/service-user-participation-snapshot-and-guide.

Procedure

All of the services were first mailed a letter outlining theresearch project and a copy of the Service User Participation Snap-shot Guide, which explained how to fill in the snapshot surveytemplate contained within the guide. For those services that didnot respond within the time frame noted, a follow-up phonecontact was made asking them to complete the snapshot. Thefinal response rate was approximately 80% (n = 200) within thecutoff time of 7 weeks.

RESULTS

Of the 200 service providers, 88.5% (n = 177) of the serviceswere in urban and other populated areas; the balance, 11.5%(n = 23), was operating in rural and remote locations of the state.Respondents were asked to identify the key functions of theservices they provided. A majority, 62% (n = 124), indicatedthat they were providing multiple functions, as drawn from thefunding body’s list of primary service provider functions. Theremaining 38% (n = 76) identified themselves as providing asingle function, as outlined in Table 2. The breakdown of thenumber of service users provided for by each individual service ispresented in Table 3.

The survey’s findings are presented around the threeaspects of participation studied: engagement, service planning,and service delivery. For many services, there was consider-able overlap across these aspects as the day-to-day running ofservices included many informal processes of engagement aswell as the delivery of supports. Service planning tended tobe reported as a more discrete aspect of service operations.Further findings about evaluation, enablers, and barriers arealso presented.



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Engagement

For the survey, the term engagement was described as therange of interactions between people (service users, staff, andmanagement). Engagement was defined as an ongoing processthat can influence people’s interest, expectations, and motivationto participate. It can include a variety of approaches, such asinformal communication or information exchange, active listen-ing, and relationship management. We found that engagementwith service users was viewed as very important by all servicesand noted several issues that emerged from the data. First,training was a key strategy for supporting engagement. Allrespondents reported that they invested in training and skilldevelopment for staff to improve engagement with service usersand used formal processes to develop skills in their staff, generallyrelating to working with service users who have a disability.

Sixteen services (0.08%) used annual training calendars or weeksto identify staff training needs. Both internal and external stafftraining was utilized by the services. We found that large organi-zations and those in urban areas offered more training opportu-nities to both staff and service users than did smaller agencies orthose located in regional and rural areas.

The survey revealed that training for management committeemembers and board members was less frequent and less formal.Training for service users who were part of this level of the orga-nization was not formalized across the services. Fifteen servicesreported that they provided initial induction training on theservice for a client and his or her family. Three respondentsreported that service users were able to access all trainings offeredto staff.

We observed that communication also emerged as a key com-ponent for engagement with service users. All services that had

TABLE 1“Service user participation snapshot” data items

Engagement Service planning Service development and delivery

Investment (support and capability) Activity ActivityDescribe how you have invested in the

following areas to enable service userparticipation:

Outline the opportunities that exist forparticipation in service planningactivities.

Outline the opportunities that exist forparticipation in service developmentand delivery activities.

Skill development for staff or serviceusers

Communication supportTimeFinancial assistanceFamily support

Roles (potential) Roles (actual) Roles (actual)Have you identified with service users

ways to work together? If so, how?Describe the specific roles around service

planning activities.Describe the specific roles around service

development and delivery activities?From this, what are the potential roles

involved in working together?What contributions do service users make

to service planning?What contributions do service users make

to service development and delivery?Communication/information (range) Communication/information (actual) Communication/information (actual)Outline the range of communication

methods used to raise awareness ofparticipation opportunities.

Which communication methods do youuse to raise awareness of serviceplanning activities and results?

Which communication methods do youuse to raise awareness of servicedevelopment and delivery activities andresults?

What information is exchanged betweenyou and your service users to enableparticipation?

What communication supports do serviceusers access in order to be activelyinvolved in service planning?

What communication supports do serviceusers access in order to be activelyinvolved in service development anddelivery?

Describe how this impacts on yourrelationship with service users.

How has working together changed yourrelationship?

How has working together changed yourrelationship?

Goals for participation Evaluation EvaluationWhat are you hoping to achieve by

involving service users in your service?Have you evaluated the level of

participation in service planningactivities?

Have you evaluated the level ofparticipation in service developmentand delivery activities?

Is there shared understanding between youand your service users about what youcan achieve through participation?

If yes, did the activities contribute towardyour reaching your goals forparticipation?

If yes, did the activities contribute towardyour reaching your goals forparticipation?



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service users with complex communication needs used a varietyof communication supports. These included communicationboards, Makaton, Plain English print materials, speech to textconverters, and skilled support staff (e.g., interpreters and speechpathologists). However, difficulty inherent in trying to com-municate with people with complex communication needs washighlighted by a number of agencies. As one respondent, a majorurban service providing community access, noted, “Communi-cation by and to people with an intellectual disability is a verycomplex process. . . . The practice knowledge of our staff is oneof ‘continuing scepticism’—meaning that constituents haveunderstood what they (staff) are communicating and ‘scepticism’that they (staff) are understanding what the constituent iscommunicating.”

With respect to constraints in providing engagement, wenoted that a number were identified primarily around time andcosts. This was illustrated by one respondent, which provideddetailed estimates of devoting approximately 16,000 h per annumat a cost of AUD$48,000 per annum to cover opportunities forparticipation, roles, evaluation, staff resources, supporters, andskill development.

With respect to funding, only five respondents reported thatthey prioritized funds for participation. All others reported thatthey experienced limits to time and money to cover operationalcosts, funds for resources, and buying consultants to encourageparticipation, and thus experienced difficulty in allocating oftime for participation. A range of costs were incurred by therespondents for participation, including marketing and promo-tion, meeting costs (i.e., taxi journeys, catering), and employingadvisors (e.g., strategic planner, speech pathologist). The res-pondents also noted significant hidden costs, which includedbackfilling of staff from normal service delivery to supportparticipation activities, employing cultural officers to supportculturally appropriate ways to participate, and the contracting ofexternal facilitators or consultants. Support for families’ partici-pation included the provision of respite financial assistance andtransport so that carers and family members could attend activi-ties. Generally, the respondents reported being flexible in offeringsupport so more formal mechanisms were less apparent.

Approximately half of the respondents indicated that theirservice had attempted to identify with service users ways towork together and define potential roles (e.g., through surveysor through one-on-one interaction. Four respondents reportedthat service users readily provided ideas on how they would liketo participate (e.g., through client forums). Four respondentsindicated that their service provided role development for serviceusers (e.g., recruitment of tutors to train clients to take overfacilitation role of arts based groups). Respondents with serviceusers, with an intellectual disability or complex communicationneeds, reported little available potential roles for service usersbecause of the nature of their disability.

Service Planning

Service planning was defined as a strategic organizationalprocess that is cyclical and that responds to issues as they arise.Service planning was also broken down into three levels of plan-ning: strategic, operational, and individual. All services providedopportunities for service users and their families, carers, andadvocates to participate in service planning on the individuallevel. Mostly, respondents noted that their service used basicsurveys, planning meetings, and individual service plans as a keystrategy for participation in service planning. All services hadmultiple opportunities for service users and their families, carers,and advocates to participate in the strategic and operational levelof service planning. The range of activities and opportunities ispresented in Table 4.

The respondents noted that the most common examples ofparticipation opportunities provided in service planning weresurveys and questionnaires, forums and workshops, and indi-vidual plans and reviews. How frequently these participationopportunities were provided was not reported by the respon-

TABLE 2Key functions of service delivery

Functions Number% of

services

Advocacy 9 4.5Attendant care, in home accommodation

support, alternative family placement,other

13 6.5

Community access 29 14.5Community support 3 1.5Information, print disability 7 3.5Large residential, small residential,

group homes4 2.0

Other support 2 1.0Respite, center based 6 3.0Respite, own home, host family,

flexible, other4 2.0

Multiple 123 61.5200

TABLE 3Numbers of service users enrolled or participating in serviceby size

Number of service users Number % of services

1 9 4.52–10 26 13.011–20 24 12.021–30 20 10.031–40 11 5.541–50 20 10.051–100 31 15.5101–200 25 12.5201+ 25 12.5No info available 9 4.5

200



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dents. All respondents cited instances where they had tried toinvolve service users and their families, carers, and advocatesoften on many occasions with little response. The respondentsreported that either informal or a mixture of formal and informalplanning activities were the most successful in contributing toservice goals for participation. All services reported that manage-ment was working collaboratively with service users in planning.The respondents also reported that service users, their families orcarers, and advocates were equal partners with management andstaff in service planning. One respondent noted that they hadtheir business planning meetings facilitated by a service user. Fourrespondents noted that their services specifically excluded serviceusers and their families, carers, and advocates from participatingin the strategic level and operational level of planning as they sawthis as being the sole domain of the management staff of theservice.

We observed from the findings that a range of communica-tion methods, both formal and informal, was used by services toraise awareness of participation opportunities. The respondents

indicated that informal methods or a mixture of informal andformal communication methods were the most successful forparticipation. One of the respondents, a remote service that pro-vides community access, noted, “Non-threatening, comfortableconversation in a safe environment. Formal settings have notbeen fruitful for feedback by the service use, but have been for thefamilies. Service users seem to prefer personal contact, i.e., phoneor in person.” Services that had service users with an intellectualdisability or complex communication needs reported difficultiesin gaining accurate feedback and input from service users. Arespondent from an outer regional service that provides respite,center based, and in own home noted to us that surveys were of“limited value regardless of response numbers, as many serviceusers respond positively regardless.” Overall, we observed thatrespondents noted using a range of communication methodsto raise awareness of service planning, activities, and results(see Table 5). The most common examples of communicationmethods used by services included face-to-face discussions(100% of services), forums and information sessions (94%), andnewsletters (52%). The frequency of these methods was notsupplied by the respondents. We found that respondents notedthat their services used informal communication on a regularbasis, either daily and weekly, and more frequently than formal

TABLE 4Range of service planning opportunities and activities

Opportunities or activities Number% of

services

Surveys, feedback forms, questionnaires 260 100.0Forums, meetings, workshops,

consultations200 100.0

Individual plans, client review, service userassessment activities

200 100.0

Day-to-day, face-to-face visits, “open-door”policy

196 98.0

Steering, reference, working, discussion,advisory, focus groups; committees;networks; boards, panels

193 96.5

Planning, goal setting days 62 31.0Policy and procedure development 57 28.5Continuous improvement registers, quality

improvement activities29 14.5

Complaints, grievance review process 24 12.0Evaluations 19 9.5Training 13 6.5Staff recruitment or training 8 4.0Reports 7 3.5Other, e.g., communication diaries, art path

process, holidays, trips, retreat6 3.0

Conference attendee 4 2.0Audits (internal and/or external) 4 23.5Paid or volunteer roles, e.g., presenter,

external rep of service3 1.5

Suggestion box 3 1.5

Note: Respondents could provide more than one answer, and for the item“surveys, feedback forms, questionnaires,” some respondents indicated thatthey used more than one of this item.

TABLE 5Service planning communication methods

Communication methods Number% of

services

Face-to-face, in person visits, one-on-one,informal discussion and feedback,open-door policy

200 100

Groups, forums, meetings, info sessions 188 94Newsletters 104 52Phone 80 40Feedback forms, surveys, questionnaires 60 30Brochures, flyers, posters, media release,

pamphlets55 27.5

Written correspondence, memos, letters 52 26Invitations 34 17Website, Internet 28 14E-mail 28 14Indirect information from complaints,

feedback24 12

Written reports 22 11Social activities, coffee clubs 11 5.5Notice boards, event boards 8 4Communication books, diaries 7 3.5Training 7 3.5Information, fact sheets 7 3.5Guides, manuals 5 2.5Open day 1 0.5Appointments 1 0.5



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communication methods, which were used by services more on aweekly to monthly basis.

Service Development and Delivery

Service development and delivery was defined as developingsystems, policies, procedures, and programs that link directly toproviding access, support, care, advocacy, and other service useractivities. All services reported using a range of opportunities forparticipation in service development and delivery activities,as presented in Table 6. Respondents noted the most commonexamples of opportunities used; these included groups and com-mittees (100% of services), individual plans and reviews (100%),and forums and workshops (92%). However, these opportunitieswere fewer than for service planning. The actual roles for service

users around service development and delivery activities weresimilar in nature to service planning roles. Three of the respon-dents noted that their services saw service development anddelivery as exclusively the domain of management. One of therespondents, a major urban service that provides a range of ser-vices including community access, accommodation support, andalternative family placement noted that service users were “NOTinvolved in decision making at the operational level for generalservice implementation.”

All other services reported that the roles of management wereas coordinators, facilitators, and partners. They saw staff as beingof practical and moral support for service users to becomeactively involved in service development and delivery. Servicesusers mainly participate in decisions relating to staff, for example,in recruiting new support workers. Three respondents noted thattheir service had developed paid roles for service users as a qualitysystem advisor, as a cleaner, and as an artist. A number of respon-dents noted that their services often involved family members asboard members or in staff recruitment.

Evaluating Participation

Only 10% of the services (n = 20) identified that they formallyevaluated the level of participation for either service planning orservice development and delivery activities. Of these, three ser-vices had engaged an external consultant for an overall review oftheir services’ effectiveness, including participation and engage-ment with clients, and 9% (n = 17) of the services had conductedspecific evaluations of their service user participation activities,usually as a single exercise that was not repeated. It appears thatthe service users wanted to be involved in individual service deliv-ery but not in the overall planning at the organizational level.

Services also reported regular evaluation activities plannedas part of the business year. The remaining services monitoredparticipation informally through day-to-day, natural communi-cation. Some noted that “evaluation is ad hoc and anecdotal.” Thedifficulty in measuring outcomes for participation and how todesign an evaluation was raised as a concern by the respondents.There was also some illustrative awareness of the complexity andvariability of participation levels; as this respondent, a majorurban service that provides a range of services includingcommunity access, accommodation support, and alternativefamily placement, noted, “The level of participation is a con-stantly moving issue, as participation will vary according to aclient’s mood, health, etc. A carer’s participation will vary depen-dent on work pressures, finances, number of children they have,number of different service providers they access.”

Ten services (5%) that they have had to review and amendpolicies and procedures to ensure that they are consistent withtheir commitment to participation. The most effective strategy inkeeping service users informed of ongoing service developments,as reported by all services in the qualitative data, was informalstrategies, such as day-to-day interactions or a mixture of formaland informal strategies. As one service respondent, an outerregional service that provides advocacy, noted, “Analysis of thelevel of voluntary participation has shown that a variety of con-sultation activities, formal and informal, group and individual,and conducted over a broader timeframe, may be more effective

TABLE 6Service development and delivery

Opportunities and activities Number% of

services

Steering, reference, working, discussion,advisory, focus groups, committees,networks, boards, panels

230 100

Individual plans, client review, service userassessment activities

200 100

Forums, meetings, workshops,consultations

184 92

Surveys, feedback forms, questionnaires 132 66Audits (internal and/or external) 86 43Policy and procedure development 81 40.5Continuous improvement registers, quality

improvement activities80 40

Complaints, grievance review process 62 31Training 33 16.5Day-to-day, face-to-face visits, open-door

policy24 12

Evaluations 23 11.5Planning days 19 9.5Suggestion box 19 9.5Paid or volunteer roles: (e.g., presenter, QA

manager role, external rep of service)12 6

Staff recruitment 12 6Reports 9 4.5Conference attendee 6 3Limited in service development but high in

service delivery1 0.5

Other (e.g., art path process) 1 0.5

Note: Respondents could provide more than one answer, and for the item“steering, reference, working, discussion, advisory, focus groups, committees,networks, boards, panels;” some respondents indicated that they used morethan one of this item.QA, Quality Assurance.



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in the future. Written surveys sent out were the least effectivestrategy in contributing to participation because of the low returnrate. We have since moved to seeking feedback and participationon a more informal personal basis.”

Benefits and Barriers

We found that most of the respondents articulated clear ben-efits for participation, both actual and potential, for their service.Further, they generally expressed the view that participationincreased staff involvement and satisfaction, and decreased staffturnover as well as improving satisfaction and outcomes forservice users. This appeared to promote a partnership approachto service delivery and increased the profile of the service in thecommunity. Almost all services reported that they had estab-lished, or were actively working toward, a culture that supportsand encourages participation to some degree. Some spoke of theincrease in skills and empowerment in other spheres of lifeflowing from good participation support. One example of effec-tive participation opportunities was provided by this respondentfrom a major urban service that provides community access,“Theservice has a long history of supporting skill development withservice users. Core to this had been the practise of engagingservice users both individually and through group processes inthose things that are most significant to them. For example, in the1980s, shortly after the service was founded, a number of serviceusers raised issues of affordable accommodation. The service sup-ported the nine people raising these issues to come together anddiscuss the issue. From this meeting the group eventually formeda housing cooperative and now operates one of the most success-ful small housing groups in Australia. Running the cooperativewas initially very difficult for the group given low literacy, lownumeracy, lack of knowledge and lack of capacity in problemsolving. However, over the years the group has developed manyskills in agenda setting, chairing, meeting procedure, tenant man-agement. Where they have not been able to develop certain skillsthey have been able to buy in and pay for those skills. The groupis rightly proud of their achievements.”

A number of barriers to service user participation were alsoevident from analysis of the qualitative data. The respondentsraised the issues of mental capacity and complex communication,needs of service users, and commented on a lack of clarity withregard to the role of both formal and informal substitute decisionmakers. Some respondents also reported the difficulty in inter-preting what the service user wants when families and advocatesare making decisions for a service user.

As a number of the respondents reported a lack of interestfrom service users in service participation in rural and remotesettings, we can only surmise that this may be because of lack oftransport and large distances to travel as well as limited access toactivities. Service providers also reported a lack of interest fromservice users overall in how the organization operates but veryinterested in their individual services delivery. One respondentreporting from a very remote service that was providing in homerespite noted that more pressing individual concerns of managingday-to-day trump higher order issues such as service planning.The respondent noted “Many people in our community arejust struggling to stay above the poverty line . . . are besieged with

overcrowded living conditions, high rentals and propertyprices, unemployment, and isolation from mainstream Australia. . . participation in how their service operates is not a majorpriority.”

The findings also indicated that cultural restraints affectedservice user participation (e.g., women in some cultures are notexpected to speak up and participate in leadership activities), andin some cultures shame is associated with having a disability. Thefindings also showed that lack of resources, such as staff, funding,time to devote staff to participation activities rather than directservice delivery, meeting spaces, transport, activities, was prob-lematic as was inadequate facilities, such as meeting spaces, par-ticularly for those facilities that do not have disability access.

DISCUSSION

The findings from this study confirm and reflect a number ofsimilar issues already identified in the literature, such as the dif-ficulty reported by services in communicating with service userswith complex communication needs, and concerns reported byservices that providing opportunities for service user participa-tion takes time away from operational activities. The vast major-ity of services in our study were “doing” participation, offering abroad range of opportunities and activities for participation.Overall, the services were aware of the need and value for partici-pation by service users in their service. However, the qualitativedata indicate that there is a lack of knowledge and skills withrespect to actually implementing strategies to achieve partici-pation goals. The importance of engagement in encouragingparticipation and establishing a culture of valuing consumerscontributing to all service activities and processes seemed to beless clearly understood. All services, for example, clearly recog-nized the pivotal role of engagement in participation but alsoidentified its challenges.

We found that those services located in rural or remote areasexpressed a greater need for intrinsic resources to assist and facili-tate better engagement and participation processes. These needswere often at the most basic level, such as a lack of equipment(e.g., computers) or facilities, such as a suitable venue or space tohold meetings with service users and families. We observed thatongoing staff vacancies and difficulties in recruitment and reten-tion in rural areas were prevalent experiences by these services.These types of impediments impact significantly on their capacityto consistently engage with service users. We also observed thatremoteness and distance were also factors that limited extrinsicactivities particularly when staff had to travel long distances tomeet with consumers and families. Our respondents in theserural and remote areas also commented on the reticence inmany rural communities to speak out about difficulties orneeds—which reflects a cultural value in many rural commu-nities of refusing to seek assistance but to “soldier on.”

We noted some differences across indigenous service provid-ers of particular interest in the Australian service context. In manyindigenous communities availability of activities is extremelyrestricted; however, our respondents in these communities notedthat services are providing or offering many opportunities forparticipation. Yet, the uptake is not as strong as observed in otherareas. A number of reasons for this were outlined by respondents.



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First, there are cultural reservations about speaking out and beinginvolved in other people’s business. Second, there is a lack oftraining for staff and service users in engagement, communica-tion, and participation generally. Third, accessible transport ismajor impediment particularly in rural areas. Notwithstandingthese problems, the respondents indicated a strong desire to formpartnerships with other agencies in addressing these issues.

In this particular Australian state, size and complexity ofthose organizations providing services to more than one regionmakes regional and local consultation difficult. Such large andcomplex agencies noted that they tended to use more formalizedapproaches to service user participation and there was less evi-dence of informal engagement; though some of this may beoccurring at the local services without in-depth knowledge bymanagement, which is often located elsewhere. These types ofservices also expressed a need for more communication resourcesand for staff to be specifically allocated to participation activities.

We also observed a trend in differences that were noted acrossvarious service types. Advocacy services tended to provide manyopportunities for service user participation, and there was a con-sequent high uptake of these opportunities by service users. Thisis not surprising given the purview of advocacy organizations.Community support agencies sought more funds for training,more participation by families, carers, and advocates and also feltthat they needed more ideas for engagement and participationactivities. Information services reported the need for an increasein staff and volunteers, with more participation activities neededacross service planning and service development and delivery.Large residential, small residential, and group home services, andcenter-based respite services expressed more needs for extra staffwho would not be involved in direct service delivery but would

be assigned to “do” participation. These services also noted thatcommunication difficulties between staff and service users were areal barrier to effective participation and engagement.

Services were more active in offering opportunities and com-munication methods around service planning rather than servicedevelopment and delivery. Either informal or a mixture of formaland informal participation opportunities seem to elicit the bestresponse from service users and their families, carers, and advo-cates. Designing and conducting evaluations emerged as an areaof difficulty for services, and the encouragement of partnershipsacross services to share resources was noted as need areas.

All respondents, but particularly those whose services wereoperating in rural or remote areas, also provided a range of sug-gestions for additional supports and resources, for what theywould need to facilitate the participation activities that theywould like to have. Support from the main government fundingbody was seen to be the key to improving service user participa-tion in services. They noted that this could be in the form ofallowing flexibility in funding agreements and allowing time to bededicated to facilitating service user participation activities. Addi-tionally, the allocation of funds from the government specificallyfor activity and dedicated resources around service user partici-pation was suggested by services. This would allow for incentivesto encourage service user interest in participating and wouldallow for the employment of extra staff to facilitate informationcommunication and interaction with nonverbal service userson an individual basis. Services also wanted either additionalfunding for their organizations to employ a dedicated workerwho would facilitate participation or for an independent, externalfacilitator or consultant to be contracted to assist services asneeded. They reported that extra funding could also be used for

FIGURE 1

Factors influencing service user participation.



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relevant training programs for service users and staff. Serviceproviders also wanted the government to develop and provideexamples of activities, opportunities, and resources for effectiveservice user participation, such as the development of evaluationtools to gauge the level of service user participation in a service.

Considerations for Participation

The data derived from this study lead us to believe that severalstructural and functional characteristics influence the dynamicenvironment for participation. An environment for participationis supported by ongoing engagement activities, and this environ-ment is influenced by characteristics of the service itself, theservice users and the community. We have portrayed thesedynamics in Figure 1, which illustrates the different factors andinteractions we identified from the research that impact onengagement and participation of service users in disability ser-vices. It is important to understand that engagement and partici-pation is influenced by all of the spheres pictured as well as thefeatures of the individual person. We believe that it is the respon-sibility of services and funding bodies to address these issues toallow for deeper engagement with service users particularlyinvesting in communication support for service users. A genericissue, such as a lack of appropriate venues and transport, is theresponsibility of the broader community.

A Final Comment

Clearly, this study is limited in that it obtained only a “snap-shot” of current practice as reported by service personnel andwas not validated by on-site reviews. A further study of serviceusers’ views on their involvement would augment these data andprovide complementary knowledge on participation. The studyhighlighted the need for further actions to support service userparticipation in disability services. While services are aware ofthe value of service user participation and overall are committedto making it happen, there is a need for further resources tosupport its actual implementation. This work requires buildingknowledge and skill capacity as well as cultural change.

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Documents

Participation Opportunities for Adults With Intellectual Disabilities Provided by Disability Services in One Australian State