Meaningful social and economic inclusion through small business enterprise models of employment for adults with intellectual disability

Abstract

BACKGROUND:

People with intellectual disability and high or very high support needs face systemic economic and social exclusion. Small business enterprise (SBE) models of employment focusing on adults with intellectual disability have emerged relatively recently, predominantly developed by parents. These are highly individualised, person-centred, and are built around the skills, strengths, and interests of the focal person. SBEs draw on a range of funding sources and paid and unpaid supports are instrumental in their development and continuation.

OBJECTIVE:

To explore the utility of SBE as an emerging employment pathway to economic and social inclusion for adults with intellectual disability.

RESULTS:

Four case studies describe a range of strategies to develop and maintain SBEs to create meaningful economic and social inclusion. They illustrate different supports used in establishing and continuing these arrangements, and issues related to safeguarding and sustainability.

CONCLUSION:

There is a dearth of empirical studies of SBE for people with intellectual disability who have high or very high support needs. Further work to develop and operationalise an SBE quality framework needs to account for the differences between the start-up and continuation stages, emphasising sustainability.

Keywords

Australia employment family leadership high support needs individualised approaches intellectual disability person-centred

1 Introduction

This paper presents findings from an exploratory qualitative study investigating the utility of small business enterprise (SBE) models of employment as an emerging employment pathway to meaningful economic and social participation for adults with intellectual disability who have high or very high support needs. The authors’ interest in SBE arises from the person-centred, flexible, and individually tailored strategies this employment approach utilises, which are crucial to redress poor vocational and social outcomes for people with intellectual disability. Perceived ‘unemployability’ has been synonymous with the identity of adults with intellectual disability for the last century (Humber, 2014). While social and economic exclusion of people with disability is commonplace across the globe (World Health Organization & The World Bank, 2011), adults with intellectual disability are particularly marginalised (Scior et al., 2015; World Health Organization, 2007).

Advocates, including parents, have challenged the low expectations, inadequate service provision, and deficit approaches that have historically limited people with intellectual disability. Notable shifts away from these limits during the second half of the twentieth century include:

The establishment of normalisation principles and social role valorisation approaches (Wolfensberger, 1972, 1983/2011, 2011a, 2011b).

Deinstitutionalisation of people with intellectual disability from large-scale asylum-type facilities (Beadle-Brown, Mansell, & Kozma, 2007; Cambridge, 2008; World Health Organization, 2007).

Supported employment strategies for adults with intellectual disability through strengths-based approaches (Bellamy, Rhodes, Mank, & Albin, 1988; Gold, 1980; McLoughlin, Garner, & Callahan, 1987; Wehman & Moon, 1988).

Person-centred planning techniques and communities of practice to increase choice and personalised supports (Cambridge, 2008; O’Brien & O’Brien, 2000).

Emerging approaches to enhance social and economic participation and inclusion, often spearheaded by parents, draw on these concepts and have included the development of individual support living (ISL) (Cocks, Thoresen, Williamson, & Boaden, 2014; Cocks et al., 2016) and SBE arrangements for adults with intellectual disability. ISL and SBE arrangements share common characteristics including strong leadership, a high degree of individualisation, strength-based approaches, an emphasis on social inclusion, and some degree of control by the person with intellectual disability and/or others close to him or her as appropriate. These arrangements have often been developed as a result of adults with intellectual disability and their parents rejecting the services on offer and instead seeking person-centred and tailored options. The development of these arrangements has been facilitated by the trend toward individual funding that is now available in some Western countries. Individual funding will become the predominant mechanism under the National Disability Insurance Scheme (NDIS) currently being phased in across Australia (Purcal, Fisher, & Laragy, 2014).

SBE is an emerging employment pathway for adults with intellectual disability, however, there is no authoritative definition of this concept. For the purposes of this paper, the authors selected four assumptions to constitute initial inclusion criteria for SBE:

Highly individualised.

Include a high degree of ownership, or control, and/or influence by the person with disability and/or people close to him or her as appropriate.

Generate some form of income or revenue for the focal person and/or business.

Promote social participation and inclusion.

Furthermore, there are different assessment criteria across jurisdictions and purposes in defining high support needs. Simplified operationalised definitions based on Australian Government disability policy (for more information on social security and Australian disability policy, see Australian Government, 2017) within the context of this paper are:

High support needs refer to people who are not required to seek open or supported employment to remain eligible for the disability support pension (DSP).

Very high support needs refer to people who are not required to seek sheltered employment to remain eligible for DSP.

These persons may be ineligible to register and receive support from specialist disability employment agencies, including Australian Disability Enterprises (ADEs) (sheltered employment) and/or Disability Employment Services (DES) (supported employment). Thus, they risk exclusion from any meaningful vocational engagement. This paper explores how SBE arrangements facilitate meaningful social and economic inclusion of adults with intellectual disability.

2 Background

2.1 Employment for adults with intellectual disability in Australia

Adults with intellectual disability and high support needs are a highly marginalised group often overlooked within the vocational rehabilitation area. However, overall labour force participation of all Australians with disability remains low. The ABS (2016) reported that in 2015, while 83.2% of Australians without disability aged 15–64 were in the labour force, the participation rate of people with disability was 53.4%. The unemployment rate for people with disability (10.0%) was almost double that of people without disability (5.3%). These 2015 labour force and unemployment rates reflected the same trends identified in the preceding 2012 Survey of Disability Aging and Carers in Australia (SDAC) (ABS, 2013).

In a global context, and in spite of very high rates of government disability expenditure, Australia ranks 21st of 29 OECD countries on disability employment rates (Productivity Commission, 2011), and last on the relative poverty risk facing people with disability (OECD, 2010). Reliance on the DSP among people with disability in Australia remains intractably high. The Department of Social Services reported that in June 2013, DSP recipients numbered 821,738 at an annual cost of about AUD 15 billion (DSS, 2013). This constitutes very considerable public expenditure and also reflects the exclusion of people with disability from the workforce, particularly as full-time employees (Welsby & Horsfall, 2011).

There are challenges with an accurate determination of labour force characteristics for adults with intellectual disability in Australia. The 2012 SDAC includes people with all cognitive limitations (including intellectual disability, acquired brain injury, Alzheimer’s disease, dementia, stroke, and some psychosocial conditions) in the category of intellectual disability (ABS, 2014). The SDAC labour force figures are derived from people living in household type arrangements (which includes group homes), but excludes people living in establishments (such as institutions and aged care facilities). Furthermore, the Household Questionnaire does not distinguish between supported and sheltered employment (ABS, 2013). These figures show a clear trend of even lower labour force participation and higher unemployment rates for people in the intellectual disability category than among people with “other” disability, or without disability, as illustrated in Table 1. The disparity for fulltime employment is even greater.

Table 1
Australian labour force characteristics 2012 (people aged 15–64)

People with intellectual disability People with other disability People with no disability

Labour force participation rate (%) 39.1 55.2 82.5

Unemployment rate (%) 20.0 8.3 4.9

Fulltime employment rate (%) 11.7 31.7 55.2

	People with intellectual disability	People with other disability	People with no disability
Labour force participation rate (%)	39.1	55.2	82.5
Unemployment rate (%)	20.0	8.3	4.9
Fulltime employment rate (%)	11.7	31.7	55.2

Source: ABS (2014).

2.2 Social and economic inclusion of adults with intellectual disability through employment

The Australian Government has identified ‘poverty, low income and income inequality; lack of access to the job market; poor educational outcomes; poor health and wellbeing; lack of access to social supports and networks; exclusion from services; and discrimination’ as drivers of social exclusion of people with disability (Australian Government, 2009:5). Poverty is cited as a major outcome of low participation in the workforce (ACOSS, 2016). Social exclusion is a common experience of Australians with intellectual disability, limiting their participation in the full range of opportunities available to other citizens. Many people with intellectual disability spend their working years in Community Access Programs (CAPs), otherwise known as adult day care/services (Cocks & Harvey, 2008; Conroy, Ferris, & Irvine, 2010) which are costly and do not provide vocational or career development. In 2014/15 AUD 808 million (10.7% of total government outlays on disability services) were allocated to community access services for 55,173 people (AIHW, 2016). Both ADE and CAPs, the common post-school outcomes for people with high support needs, are considered unsatisfactory options by increasing numbers of people with intellectual disability, their families, and other stakeholders, who object to low or no wages, low intensity activity, and the congregated and segregated nature of these services. Further, negotiating the various pathways to employment generates enormous frustration, dissatisfaction, and fear for many people with intellectual disability and their families (Cocks & Harvey, 2008). For many, fear of losing the DSP as a consequence of earning a wage is a barrier to choosing an inclusive employment pathway (Cocks & Harvey, 2008), even though a sole reliance on this pension places recipients’ income below the poverty line (ACOSS, 2016).

Acknowledging the limitations of adult day care/services in facilitating social and economic inclusion and the influence of person-centred practices to enhance meaningful participation, changes to CAPs and funding have emerged. In Australia, and elsewhere, some adult day care/services have closed or phased out their centre-based programs and instead are focusing on community-based activities at leisure centres, parks, and shopping complexes. While this approach has greatly enhanced community presence, it does not necessarily lead to community inclusion. Leading-edge approaches, facilitated by the establishment of new agencies that are not limited by a legacy of segregation and a deficit conceptualisation of disability, are developing individualised and tailored CAPs.

These programs have developed from person-centred approaches and are characterised by a high degree of control and direction by the person or others close to him or her, often combining tailored skills development, vocational, community, and leisure activities. This has been supported by the rise of individualised funding, where service users are in control of the purse strings, and a shift to quality rather than quantity of support provided. It is hoped that the NDIS will improve ‘choice and control’ (the primary stated objective of the NDIS) and create additional opportunities for meaningful social and economic activities through individualised funding. However, as with many other large-scale policy and program shifts, concerns are being raised about the funding availability and the bureaucracy of the NDIS. While the NDIS in itself may not transform perceptions and attitudes towards disability, it can provide opportunities to undertake innovative and cutting-edge approaches to meaningful social and economic inclusion of adults with intellectual disability and high support needs. For example, it may facilitate the pursuit of ISL and SBE arrangements.

2.3 SBE for adults with intellectual disability

The authors were familiar with several SBE arrangements which informed the conceptualisation of this project but very little has been published in the peer reviewed or formal literature. A structured search using the following search string without any publication date limitations was deployed in PsychINFO, Current Contents Connect, and Scopus in early February 2016, with ^* representing the wildcard function within the databases: “Disability AND ((micro-business) OR (small business) OR (self-employment) OR (micro-enterprise) OR (social enterprise) OR (entrepreneur^*))”. The search returned a total of 262 publications, however, following a structured assessment of titles, abstracts, and full-text manuscripts, only three studies were identified that shared major characteristics of SBE and involved people with high support needs, of which two included adults with intellectual disability.

The study by McNaughton, Symons, Light, and Parsons (2006) focused on self-employment for people with cerebral palsy and augmentative or alternative communication needs in the USA, with some participants having additional vision and/or hearing impairments. The study was carried out as a focus group through an internet bulletin board system over eight weeks, with participants signing in about three times a week with a new discussion topic every five days. This qualitative study identified six major themes: ‘description of employment activities, benefits of self-employment, negative impact of self-employment activities, barriers to employment, supports to self-employment, and recommendations to others’ (McNaughton et al., 2006:185). Their employment activities covered a wide range of activities, including advocacy, public speaking, website development, software consultancy, pottery, and artwork. In addition to financial benefits, the research also emphasised the importance of dignity, control and independence, and self-worth as valued and active members of the community (McNaughton et al., 2006). While self-employment is highly individualised and can facilitate a range of social and economic benefits, it does not by itself lead to an SBE as defined in the introduction for the purposes of this paper, particularly related to the emphasis on promoting social inclusion.

Conroy et al. (2010) reported on a ‘microenterprise’ program for 27 people with intellectual and developmental disability developed as part of the broader vocational services delivered by an agency in Michigan, USA. Following the establishment of individual micro businesses, defined as having 10 or fewer workers, it was found that all factors rated on a standardised outcome measure were improved, both among the program participants with intellectual and developmental disability and their support workers. For example, there were perceived improvements across all 17 areas of work life quality among participants, of which differences across 11 areas were found to be statistically significant. These improvements were also found to be socially significant. The authors conclude that ‘the results found within [that study] lend moderate support to the notion that microenterprise options do offer a viable alternative to “adult day programs” and “sheltered workshops” for adults with intellectual and developmental disabilities’ (Conroy et al., 2010:276). The paper also recommended that future studies investigate aspects of quality of life in conjunction with engagement and income generation (Conroy et al., 2010). While the microenterprises described by Conroy et al. (2010) facilitated a range of social and economic benefits, it was unclear how individualised these microenterprises were, and how much control and influence the participants had over the business.

Hagner and Davies (2002) conducted a qualitative study of self-employed persons with cognitive disability. The businesses were ‘connected to genuine interests and talents of each individual’ (Hagner & Davies, 2002:73) and generated substantial opportunities for social connections. Support workers and agency staff worked proactively to ensure the focus person maintained control of the business, even in arrangements developed for persons with very high support needs. While the businesses were not necessarily a major source of income, they provided a valuable social role as a business owner, reduced social isolation, and enhanced individual choice and control. The person’s ability to draw on additional support from multiple sources, such as family, friends, disability support organisations, and organisations offering business advice, and to access different types of expertise was crucial to the success of the business and to help prevent burn-out. The authors also recommended that ‘financial support to the business owner include careful benefits planning and assistance in pursuing work incentives’ (Hagner & Davies, 2002:73).

3 Methods

This study was granted approval by the Human Research Ethics Committee of the university with which the authors are affiliated in the first half of 2016 (approval number HR57/2016). A reference group, consisting of members experienced in SBE for people with intellectual disability and high or very high support needs and people from a small business background, guided the study. Four existing Australian SBEs were purposively identified and recruited through the reference group. With the emphasis on intellectual disability and high or very high support needs, there were some initial challenges in local recruitment. However, as the project progressed, and the research team and reference group engaged more actively with people outside the traditional service sector, additional arrangements were identified, beyond the numbers required for this initial study.

In each case, at least one key informant was identified (and included a parent in all four instances) who was then interviewed in detail about the background and development of the initiative, as well as facilitators, barriers, key issues that arose over time, and major lessons learned. They were then asked to nominate others who could add additional information and perspectives, and these individuals were also interviewed. Additional information was gathered by telephone interviews or through emails with key personnel who could not be interviewed directly or where follow up information was required. Interviews were recorded for later analysis. The taped interviews were reviewed with issues raised extracted and recorded. Themes were derived from this that recurred over several people interviewed or several different cases through common qualitative research approaches consisting of data reduction, interpretation and analysis of the information, and verification (Miles & Huberman, 1994). These themes then provided the core material for determining the important issues for development of such enterprises, barriers or problems, as well as facilitators. A draft of each case study was reviewed by a key informant in each respective SBE who provided edits as appropriate.

4 Case studies

The following section presents four businesses developed for adults with intellectual disability. Recognising the benefit of publicity to any business, permission was granted for use of the business names and forenames of the focal persons in each arrangement. The appropriate approvals were obtained from the stakeholders in each SBE as well as the university Human Research Ethics Committee that approved the research protocol. The first two case studies are of established SBEs for adults with intellectual disability and very high support needs that have operated for 8 and 10 years. The other two examples are presented as brief vignettes of businesses which have the potential to become full SBEs, but are still in their infancy. Both these arrangements were developed for adults with intellectual disability and high supportneeds.

4.1 Cam Can Services

Cameron is a young man in his mid-20s with a significant intellectual disability and requires a very high degree of support. He lives with a co-resident in his own ISL arrangement and has support from paid staff during the day. Cameron is a keen swimmer, ball sport enthusiast, and greatly enjoys listening to and playing music. He is learning to do his own grocery shopping, and helps with most of the household chores. Cameron’s business, Cam Can Services, began in 2009 as a business to eliminate the need for people to stay home from work to wait for a tradesman or a delivery. Cameron’s business is to do the waiting. Cameron will come to the person’s house with a support worker and wait for the service person to arrive, and while waiting will do a series of tasks negotiated with the homeowner. These might be raking, sweeping, or cleaning a car. Most recently the business tendered for and won a contract to clean cars for another business.

To develop the original plan for the business a group of 11 people including Cameron, worked on the concept. This group or “Circle of Friends” became known as “Cam’s Support Crew”. The group consisted of Cameron’s parents, two other family members, a friend with extensive small-business experience, and others who had human resource and management experience – all highly dedicated individuals who gave their own time and expertise. All were closely connected to Cameron. Once the Business Plan was in place, a subgroup of Cam’s Support Crew formed consisting of four members with unique business related skills and they became primarily responsible for developing Cam Can Services, regularly feeding progress back to the larger group and engaging with them for consensus and future direction. Their contributions were particularly advantageous as it is apparent that support to set up a business requires some specialised skills and knowledge. Cam’s Support Crew was also responsible for ensuring that Cameron lives a good life, one where his interests and wishes are of the first importance.

Cameron’s parents strongly believed in Cameron’s capacity and had a vision for him running a proper business as a real alternative to the sheltered work or CAPs that were the only options potentially available from the service system. Cameron and his needs and interests were central to the business. One of the Guiding Principles for his Support Crew, was that “All support/services will be customised and individualised for Cameron with a focus on expanding Cameron’s personal community and his social connections.” Cam Can Services employs a coordinator whose role is to negotiate the jobs, ensure that the required equipment is available for Cameron and the support worker involved, communicate to all members of the team, invoice for work done, and report to Cam’s Support Crew how things are progressing. This person is also involved in the coordination of support for Cameron at home as he lives in his own ISL arrangement, sharing with a community member who provides some freely given support. This is teamed with paid support workers who work during the day, supporting Cameron to operate his business, and attend to daily personal tasks. In this way all of the staff know Cameron extremely well from both home and work situations. Clearly the arrangement is seen as positive by the staff and supporters as several of them have been involved for five yearsor more.

Cam Can Services started out slowly and at a pace where Cameron was confident and capable. The subgroup within Cam’s Support Crew (the business development team) also thought through issues such as insurance, safety, the image of both Cameron and the support workers, as well as safeguarding the business if something went wrong or Cameron was sick. They spent considerable time developing principles to underpin the business to ensure that all support staff and others involved were very clear on the core issues such as the centrality of Cameron in the business, the essential need for high quality reliable service, and the need for continual communication between everyone involved.

The major ongoing benefit of Cam Can Services is that Cameron lives a full life with many relationships, days that are full of meaningful contribution and opportunities to continue to develop his skill set. Cameron also earns an income that has allowed him to gain a degree of financial independence. His image has been transformed from a range of negative roles shaped by the service system, to that of a business owner, housemate, and contributor to the community. In the community, Cameron has developed many relationships. Through his business and volunteer work he has gained relationships at local sports clubs and at a sailing club where his job is to refill the vending machines. He is well known by the staff and club members who all are extremely supportive of what he is doing and his business. They comment that he has totally changed over the years and now is so much more calm and relaxed.

4.2 JACKmail

JACKmail was established for and around Jackson, a 31 year old man with profound intellectual disability and autism due to a rare chromosome disorder; Phelan McDermid Syndrome. Despite Jackson’s limitations he has a good, interesting and valued life. Apart from working in the business he enjoys a range of activities including volunteering for the ACT public library system, trampolining, gymnastics, swimming, music. He lives in his own home in an intentional community comprised of 25 townhouses. The community was designed around him and two other young men with a disability but is an inclusive community and is not disability specific. The several other households that form part of the intentional community have undertaken to be good neighbours who include the young men and welcome them as residents.

JACKmail is a courier service that offers mail pickup and delivery. The business provides collection of mail from a business’ Post Office box and delivery to the business location, as well as collection of out-going mail from the business to the post office to be posted. JACKmail operates in the inner southern area of Canberra, five days a week between 8:30 am and 12:00 pm and services a total of 15 clients. The courier service is carried out by Jackson, with his support worker who drives the work vehicle, facilitates interaction between Jackson and JACKmail clients, and supports Jackson in all aspects of the work tasks. The business has been in operation for ten years. As the business owner, Jackson’s mother, Sally, employs him as a permanent part-time employee (22.5 hours/week) under the Supported Wages Scheme (SWS). The SWS allows employers to remunerate workers with disability based on productivity, so if an employee has been assessed as being 50% productive, he or she will receive 50% of the award (or prevailing) wage (for more information on the SWS, see Australian Government, 2016). Sally does not draw a salary, and the support worker is paid by the community based accommodation support service.

Sally approached a local community based disability accommodation organisation, Hartley Lifecare, with her idea of using a support staff member to accompany Jackson on the courier business to facilitate his interactions with customers, and Hartley agreed. The CEO of Hartley has been involved with Jackson now for over ten years and Jackson’s main support worker has also been involved for a similar length of time, providing great continuity to the support arrangement.

When Jackson was 14, Sally attended a conference in Brisbane and was inspired to seek a real job for him in the future where he would contribute to the community. Her vision for Jackson was that he would hold meaningful employment based on his interests and abilities after he finished high school. From watching Jackson, Sally developed a list of the things that he enjoyed, which included walking, riding in a car, listening to music, and interacting with people. From this, the idea of the courier business emerged. The vision for JACKmail was to create meaningful employment and a valued role for Jackson, which was not built on a charity model, but rather on a reputation for a reliable and cost effective service that met a genuine business need.

Whilst Sally was clear that she had no aspiration to be a business owner, she has taken on this responsibility to fulfil her family’s vision for Jackson. Operational and administrative tasks such as invoicing, reconciliation, preparing tax statements, creating run sheets, or arranging for vehicle maintenance are carried out by Sally on a weekly basis.

All support staff are coordinated through Hartley, including recruitment, payroll, and training. If any issues arise throughout the day, for example if the car breaks down, Jackson’s main support worker and the other support workers can call the organisation directly. Jackson’s main support worker understands the importance of JACKmail providing a reliable service. He has delivered the mail on his own for a short time when Jackson was unwell. To him it is important that both clients and members of the wider community see Jackson as his “boss”, highlighting Jackson’s capabilities and the contribution that he makes to his community.

The continued success of JACKmail can be attributed to a number of factors:

The business is designed around Jackson and his likes, strengths, and support needs. It is underpinned by a clear vision for his life that includes having a meaningful job and a valued and contributing role in the community. The vision is shared by the family, the support organisation, and Jackson’s support workers.

The business is genuine – offering a real service that is reliable and fulfils a specific need for the clients. About half of the businesses have been customers of JACKmail since the business first started. When customers have opted out it has been because of relocation out of JACKmail’s area, never because of not being satisfied with the service.

There is a range of supports in place for JACKmail. These are both formal and informal. Supports are flexible and creative in the way they function – family or alternate staff fill in if Jackson or his support worker are unavailable for any reason. The people involved in the business know each other well and share a commitment to both Jackson and the business.

Considerable amounts of planning went into establishing JACKmail, and there is continuous evaluation and further planning to ensure the business, and Jackson, continue to thrive.

JACKmail provides a range of benefits. His work gives Jackson a purpose and a valued role in the community, and provides regular everyday activity. In conjunction with his living arrangement, JACKmail provides opportunities for Jackson to interact with a number of people from the wider community.

Involvement in JACKmail and Jackson’s life has given his main support worker steady and fulfilling employment. He knows Jackson well and considers him a friend. In setting up JACKmail, Jackson’s mother has been able to prove that an individualised approach to creating meaningful community participation through employment is possible, but it takes strong advocacy, dedication and time to make it happen. Families and services need to work alongside each other to achieve these results – doing with, as opposed to doing for. According to Sally:

“The potential for other people to create person-centred employment is limitless, it’s absolutely limitless. It just has to be looking at who is the person, what can they do, what do they want, what are they like?”

4.3 The Really Useful Recyclers

The Really Useful Recyclers is a business that collects and re-uses newspapers that are turned into firelighters and artworks for sale. It was established in 2015 as a means to provide meaningful work for two young men in their late teens on the autism spectrum, Josh and Courtney. Josh’s mother had the original idea for the business. She connected two of Josh’s favourite characters, Thomas the Tank Engine and Wall-E, as inspirations to find ways to make usable products from newspaper. The Really Useful Recyclers collect papers, boxes and bubble wrap each week from a roster of shops and businesses and turn them into firelighters, decorative artworks, jewellery, and Christmas trees – particularly popular at the time of interview (towards the end of 2016). Courtney prefers to prepare the initial “donuts”, made of compressed, shredded paper, and “biscuits”, made by rolling and winding sheets of paper. Josh is very good at using the biscuits and donuts to compose artworks and decorations from templates prepared by his mother. The Really Useful Recyclers sell their products primarily online, at markets, and by word of mouth. When they go to markets, Courtney likes to demonstrate his skills while Josh prefers to engage with people from behind the stall. They are usually supported by their families, including at the markets.

Josh and Courtney were friends at school and Josh’s mother approached Courtney’s mother for them to join in the business. The families live some distance from each other, but there is regular personal and electronic communication between them. Josh’s mother continues to be the driving force behind The Really Useful Recyclers. Both Josh and Courtney work from home most of the time. They are supported in the work by support staff and their families. Courtney does some of his work at the local community centre where he also attends some recreational sessions. Josh goes to the Men’s Shed each week, and people from the Men’s Shed have been most helpful in constructing some of the equipment used by Josh and Courtney.

Josh and Courtney have improved their manual, social, and communication skills while working in their business. Their families and support staff agree that both young men have more community involvement and recognition than previously. They have increased confidence when tackling new product lines, such as the Christmas trees, a line of jewellery and keyrings.

4.4 Chirpy Bird Seed

Chirpy Bird Seed was established in early 2016. It produces and sells a variety of birdseed mixes and related products suitable for both wild and domestic birds. It is built around Josef, a young man in his late teens with intellectual disability. Josef and his family accessed a range of supports when planning his transition from school. The idea of starting his own business was first raised by a government worker assisting people with disability to plan, organise, and access information, supports, and services. While Josef initially attended a sheltered workshop after leaving school, it became apparent that this did not suit him, and this galvanised their efforts to establish his own SBE.

Once Josef had decided on the type of business he wanted, substantial work went into the planning of the business. This included researching the different types of seeds suitable for typical birds in their local community as well as navigating the complexities of different levels of government regulations. They received substantial mentoring from a renowned veterinarian and authority in the field, to identify the appropriate seeds to include in the different mixtures. A substantial donation of seeds from a wholesaler for the start-up was followed by additional supplies at a discounted rate. Josef believes it is important to be environmentally friendly, so Chirpy Bird Seed recycles containers for the different bird seed mixes. The local small business centre and a disability support agency with a strong emphasis on community inclusion also supported them.

As a relatively new business, they are still facing a number of challenges. While their business permit does not allow them to sell the products from the home, they rely on deliveries as well as market stalls. They are not generating sufficient revenue at the moment to meet all the business costs, and may need additional support with marketing. Attempts to sell their products through other retailers have had mixed success so far. However, it is clear that Josef thrives as the proprietor of Chirpy Bird Seed and his mother and grandparents are very supportive and adamant that they will not let the business fail as going back to the sheltered workshop is notan option.

5 Discussion

The four examples described above illustrate the social values underpinning SBE – tailored to the individual’s interests, strengths, and needs, as well as using person-centred approaches aimed at enhancing social networks and community inclusion. Developing an SBE leads to a strong sense of personal achievement, pride in making a meaningful contribution to society, and a positive personal image for the focal person as well as other stakeholders. The case studies illustrated the substantial entrepreneurial skills required in the establishment of these arrangements, which is likely to be a defining characteristic of SBE. Similar to other business ventures, the ability to identify and capitalise on competitive advantages is a highly specialised skillset. SBEs, however, require this to be carried out through a person-centred process. The combination of both formal (business and disability service agencies) and informal (family and friends) support was identified as crucial to success.

The meaningful economic and social activities described in the case studies highlight the importance of valued social roles for the focal persons. Key stakeholders ensured that these arrangements were not simply economic activities carried out in isolation, but would facilitate community engagement and development of social connections. These were regarded as equally important as the economic benefits to the SBEs, or arguably more important for the newer arrangements that were yet to make a profit. While the focal persons clearly took pride in running their own businesses, this is contextual and requires others to recognise them as the proprietors.

The case studies that this study draws on all reflected strong social values, which informed and shaped these SBEs. These arrangements were reminiscent of social enterprises which commonly strive to build social capital rather than generate income (Noruzi, Westover, & Rahimi, 2010:4). Sally actually describes JACKmail as a ‘social enterprise business’. Both SBE and social enterprises draw on a mix of social and commercial elements. This includes the reliance on a variety of funding sources, including informal support (or volunteer manpower) and grants. However, care in drawing comparisons between SBE and social enterprises is warranted, as many sheltered workshops and other congregate options can be characterised as social enterprises.

All four case studies were strongly supported and driven by parents, which was a clear asset in ensuring person-centred and individualised approaches in the development of these arrangements. However, this also threatens the sustainability of the business if key supports are no longer available. Cam Can Services is an example of how re-structuring the developed business to become less reliant on parental volunteer contributions can enhance sustainability. This SBE has sufficient turn-over to employ professional staff to take care of the administrative tasks of the business, which reduces the reliance on Cameron’s parents. Similarly, the partnership between JACKmail and Hartley Lifecare mitigates the reliance on Sally’s voluntary services. This illustrates the importance of planning to ensure that informal involvement is strong, especially as parent involvement is reduced. Safeguards may include strategies such as Circle of Friends or Microboards.

The different characteristics between the two established SBEs (Cam Can Services and JACKmail) compared to the emerging arrangements (The Really Useful Recyclers and Chirpy Bird Seed) reflect the maturity of the established arrangements as well as some of the forthcoming challenges for the newer businesses. All four arrangements had clear social values and principles, although more strongly formulated around the established SBEs while the newer arrangements are still developing. It will be important for these newer arrangements to remain person-centred, highly individualised and tailored to the focal persons to develop into strong SBEs. They will also need to secure more resources. Financial sustainability, even if obtained through grants or disability support funding, is an important consideration, which may ultimately determine the viability of the newer businesses.

The substantial involvement of parents and other informal support in establishing and continuing SBEs exemplifies how SBE is different to self-employment. While the social and economic benefits of SBE and self-employment may be similar, the support structures vital to starting-up and continuing SBEs are distinctive. As such, SBE sits somewhere in-between social enterprise and self-employment.

The SBE literature review only identified two papers focused on adults with intellectual disability while a third study focused on adults with high or very high support needs, although only the study by Hagner and Davies (2002) appeared to meet all four inclusion criteria specified in the introduction of this paper. However, there were questions around the financial sustainability of some of the business ventures described in that paper. This was also a challenge for the two newer SBEs described in this paper. Nevertheless, elements of all three studies identified in the literature illustrated how some of the key principles of SBE were used to facilitate vocational pathways to meaningful social and economic inclusion, including for adults with intellectual disability and high support needs.

While this paper reports on a small-scale, exploratory, qualitative study, there is substantial scope for further work in this area. In addition to expanding the evidence base for SBE, it will be important to continue developing the conceptualisation of SBE as a quality framework to assist in the planning and establishment of new arrangements, as well as supporting the evaluation and review of existing arrangements. Since starting the project, the authors have identified more possible SBEs, illustrating how adults with intellectual disability and high support needs, often supported by parents, are seeking more meaningful social and economic inclusion.

6 Summary

Examples of families establishing successful businesses around the unique interests, skills, and needs of their sons and daughters with intellectual disability and high or very high support needs have emerged. These are along a continuum from commercially viable business to social/vocational undertakings. The case studies presented in this paper illustrated the key role of parents in the establishment and continuation of these SBEs. The businesses were developed after considerable contemplation of their sons’ skills, interests, abilities, and strengths within the context of intellectual disability and high or very high support needs. They required substantial individualisation within a person-centred approach, tailored specifically to the focal person, and drew on a range of supports with a variety of skillsets across the disability and business spectra.

SBE draws heavily on social entrepreneurship, with strong underlying social values infusing the arrangements. There is also a significant degree of innovation or entrepreneurial mind-set in identifying and acting upon relative competitive advantages, which may be embedded in these social values. Further work to operationalise this descriptive framework, which may include identification of specific themes, indicators, and sources of evidence, will enhance the conceptualisation of SBE. There is also a need to develop guidelines or a framework for setting-up an SBE, as well as resources to assist in the transition from a start-up to a sustainable SBE. This may include strategies for parents or other key stakeholders to withdraw from the venture, further enhancing the sustainability of the business.

Conflict of interest

None to report.

References

ABS.(2013). Disability, aging and carers, Australia: Summary of findings 2012. Retrieved from http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4430.0Main+Features12012?OpenDocument.

ABS. (2014). Intellectual disability, Australia, 2012. Retrieved from http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4433.0.55.003Main+Features12012?OpenDocument.

ABS. (2016). Disability, aging and carers, Australia: Summary of findings 2015. Retrieved from http://www.abs.gov.au/AUSSTATS/abs@.nsf/Latestproducts/4430.0Main%20Features202015?opendocument&tabname=Summary&prodno=4430.0&issue=2015&num=&view

ACOSS.(2016). Poverty in Australia. Retrieved from http://www.acoss.org.au/wp-content/uploads/2016/10/Poverty-in-Australia-2016.pdf.

AIHW. (2016). Disability support services: Services provided under the National Disability Agreement 2014-15. AIHW bulletin no. 134. Cat. no. AUS 200. Retrieved from: http://www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id=60129555426.

Australian Government. (2009). A stronger, fairer Australia. Retrieved from: http://apo.org.au/node/20489.

Australian Government. (2016, 16 November 2016). Supported Wage Scheme. Retrieved from https://www.employment.gov.au/supported-wage-system#page-wrapper.

Australian Government. (2017, 3 January, 2017). Guide to social security law: 3.6 Disability and Carer. Retrieved from http://guides.dss.gov.au/guide-social-security-law/3/6.

Beadle-Brown, J., Mansell, J., & Kozma, A. (2007). Deinstitutionalization in intellectual disabilities. Current Opinion in Psychiatry, 20(5), 437–442. 10.1097/YCO.0b013e32827b14ab.

10.

Bellamy, T., Rhodes, L., Mank, D., & Albin, J. (1988). Supported employment: A community implementation guide. Baltimore: Paul H. Brookes.

11.

Cambridge, P. (2008) The case for a new ‘case’ management in services for people with learning disabilities. Britisch Journal of Social Work, 38(1), 91–116. 10.1093/bjsw/bcl339.

12.

Cocks, E., & Harvey, T. (2008). Report: Employment/day options interface research project. Retrieved from: http://espace.library.curtin.edu.au:80/R?func=dbin-jump-full&local_base=gen01-era02&object_id=135257.

13.

Cocks, E., Thoresen, S., Williamson, M., & Boaden, R. (2014). The individual supported living (ISL) manual: A planning and review instrument for individual supported living arrangements for adults with intellectual and developmental disabilities. Journal of Intellectual Disability Research, 58(7), 614–624. 10.1111/jir.12059.

14.

Cocks, E., Thoresen, S. H., O’Brien, P., McVilly, K., Thomson, A., Gadow, F., ... Prain

(2016). Examples of individual supported living for adults with intellectual disability. Journal of Intellectual Disabilities, 20(2), 100–108.

15.

Conroy, J. W., Ferris, C. S., & Irvine, R. (2010). Microenterprise options for people with intellectual and developmental disabilities: An outcome evaluation. Journal of Policy and Practice in Intellectual Disabilities, 7(4), 269–277. 10.1111/j.1741-1130.2010.00276.x.

16.

DSS. (2013). Evaluation of disability employment services 2010-1013 – final report. Retrieved from: https://www.dss.gov.au/sites/default/files/documents/05_2014/des_evaluation_report.pdf.

17.

Gold, M. W. (1980), The Austin project: Final report. New York Marc Gold and Associates.

18.

Hagner, D., & Davies, T. (2002). “Doing my own thing”: Supported self-employment for individuals with cognitive disabilities. Journal of Vocational Rehabilitation, 17 (2), 65–74.

19.

Humber, L. A. (2014). Social inclusion through employment: The marketisation of employment support for people with learning disabilities in the United Kingdom. Disability & Society, 29(9), 275–289. 10.1080/09687599.2013.776490.

20.

McLoughlin, C., Garner, B., & Callahan, M. (1987). Getting employed, staying employed. Baltimore: Paul H. Brookes.

21.

McNaughton, D., Symons, G., Light, J., & Parsons, A. (2006). “My dream was to pay taxes”: The self-employment experiences of individuals who use augmentative and alternative communication. Journal of Vocational Rehabilitation, 25(3), 181–196.

22.

Miles, M. B., & Huberman, A. M. (1994), Qualitative data analysis (2nd ed.). Thousand Oaks, London, and New Delhi: Sage Publications.

23.

Noruzi, M. R., Westover, J. H., & Rahimi, G. R. (2010). An exploration of social entrepreneurship in the entrepreneurship era. Asian Social Science. 6(6), 3–10. 10.5539/ass.v6n6p3.

24.

O’Brien, C. L., & O’Brien, J. (2000) The origins of person-centered planning: A community of practice perspective. In Holburn

& Vietze

(Eds.), Person-centered planning: Research, practice, and future directions. Baltimore: Paul H Brookes.

25.

OECD. (2010). Sickness, disability and work: Breaking the barriers. A synthesis of findings across OECD countries. Retrieved from: http://www.oecd.org/publications/sickness-disability-and-work-breaking-the-barriers-978926408856-en.htm.

26.

Productivity Commission. (2011). Disability care and support (Report no 54). Retrieved from: http://www.pc.gov.au/inquiries/completed/disability-support/report.

27.

Purcal, C., Fisher, K. R., & Laragy, C. (2014). Analysing choice in Australian individual funding disability policies. Australian Journal of Public Administration, 73(1), 88–102.10.1111/1467-8500.12063.

28.

Scior, K., Hamid, A., Hastings, R., Werner, S., Belton, C., Laniyan, A., ...

Kett, M.

(2015). Intellectual disabilities: Raising awareness and combating stigma - a global review Retrieved from https://www.ucl.ac.uk/ciddr/publications.

29.

Wehman, P., & Moon, S. (1988). Vocational rehabilitation and supported employment. Baltimore: Paul H. Brookes.

30.

Welsby, J., & Horsfall, D. (2011). Everyday practices of exclusion/inclusion: Women who have an intellectual disability speaking for themselves?Disability & Society, 26(7), 795–807. 10.1080/09687599.2011.618731.

31.

Wolfensberger, W. (1972). The principle of normalization in human services. Toronto: National Institute on Mental Retardation.

32.

Wolfensberger, W. (1983/2011). Social role valorization: A proposed new term for the principle of normalization. Intellectual and Developmental Disabilities, 49(9), 435–440.

33.

Wolfensberger, W. (2011a). Will there always be an institution? I: The impact of epidemiological trends. Intellectual and Developmental Disabilities, 49(6), 416–424.

34.

Wolfensberger, W. (2011b). Will there always be an institution? II: The impact of new service models-residential alternatives to institutions. Intellectual and Developmental Disabilities, 49(6), 425–434.

35.

World Health Organization. (2007). Atlas: Global resources for persons with intellectual disabilities. Geneva: WHO.

36.

World Health Organization, & The World Bank. (2011). World report on disability. Malta: World Health Organization.