Enabling Formal and Natural Supports for Adults with Developmental Disabilities in British Columbia, Canada: Experiences of Three Organizations

Abstract

Despite the recognition of the importance of both formal and natural supports for adults with developmental disabilities, there is limited research on how organizations integrate these supports in the Canadian context. Using a collective case study design, this study explored how three organizations in British Columbia, Canada, facilitate the integration of formal and natural supports to improve the lives of adults with developmental disabilities. Data were collected through a comprehensive document review, interviews, and focus groups. The analysis was conducted in multiple phases, focusing initially on individual cases and then on cross-case themes. This research revealed both similarities and differences across three organizational approaches to integrating formal and natural supports for adults with developmental disabilities and their families. Key themes were identified, including the importance of relationships in this work, the creation of natural supports through formal supports and brokered community connections, systemic changes and innovative approaches, and the impact of funding models on organizational support. The findings highlight the critical need for organizations to build trust-based relationships between staff and the people they serve and to provide flexible support that adapts to changing needs and circumstances, facilitated by funders allowing for such flexibility. This study also underlines the value of formal supports in establishing natural networks and the necessity for cross-organizational partnerships to foster innovation and implement effective changes in the provision of services for people with developmental disabilities and their families.

1. Introduction

Adults living with developmental disabilities, including but not limited to autism, cerebral palsy, and intellectual disability, are confronted with substantial challenges that require varying degrees of support [1]. For example, adults with developmental disabilities have reported poor health and a lack of emotional support at higher rates than those without disabilities [2,3]. Systems of support are recognized as crucial networks that offer resources and strategies to assist individuals with developmental disabilities and their families [4]. Within these systems, formal supports refer to paid, structured services or government programs [5,6,7]. In contrast, natural supports are typically unpaid supports, often provided by family, friends, and community members and motivated by love, commitment, and necessity [6,7,8,9].

Both formal and natural supports offer unique value in providing an individual with the support they need to live their desired life. Formal supports can provide specific expertise, such as assisting in daily activities and helping to navigate complex systems and paperwork; however, they are often limited in availability, accompanied by long waitlists, and constrained by professional boundaries [7,10]. Natural supports encompass multiple life domains, offering relationship-based emotional support and practical assistance that foster social connectedness, promote independence, and improve overall quality of life [8,10,11]. Individuals may encounter barriers in accessing natural supports for reasons like their age, functional capabilities, family structure and culture, living arrangements, and prevailing societal perceptions of disability [4].

The literature has also highlighted the sometimes indistinct boundaries exist between formal and natural supports [10,11,12] and that people often need an integration of both formal and natural supports to live their best lives [5]. Accordingly, an optimal approach may be to interweave these two types of support, leveraging the strengths of each.

Despite an increasing recognition of the importance of balancing formal and natural supports [5,6,7,10,13], there is limited research that specifically examines the role that support-focused organizations play in achieving such a balance in the Canadian context.

This study explored how three organizations in British Columbia, Canada, facilitate integrated supports for adults with developmental disabilities. Below, we describe a multiple case study that attempted to answer the following research question: How do three organizations working to enable adults with developmental disabilities and their families in British Columbia find the balance between the formal and natural supports they need and/or desire?

2. Methods

2.1. Case Study Design

This study idea was developed by persons with lived experience of accessing disability-related support, and research was guided by an advisory board of adults with developmental disabilities and their family members and supporters throughout. We applied a collective case study design [14] to examine common issues, features, and contexts across three organizations in British Columbia (BC) to understand how they are seeking to enable both formal and natural supports for adults with developmental disabilities and their families. We purposefully selected three BC-based organizations that focused on serving individuals with developmental disabilities, if not exclusively, and that were working to promote and enable natural supports to exist in tandem with formal supports. This purposeful selection was made based on common features (e.g., common values around fulfilment of good lives for persons with developmental disabilities and their families; long history of providing support) as well as unique features that we believed would offer greater insight into the broader phenomenon of organizational engagement in formal and natural support provision (e.g., size of organization, source of funding).

Table 1. Values of each case organization.

Planned Lifetime Advocacy Network (PLAN)	“Caring relationships are the key to being safe, secure, and living a good life. Contribution equals citizenship. People with disabilities have important contributions to make to our communities, and PLAN works to ensure they are seen and recognized. Self-sufficiency makes PLAN more effective. Independence from government funding provides PLAN with the freedom to advocate for people and families without compromise. We must always be led by, and be accountable to, families. PLAN was founded by families, and its structure ensures PLAN is always directed by and accountable to families”. [15]
posAbilities	“Person centred: We are person-centred in our thinking and our actions. Inclusion: We embrace diversity and believe every person is an equal and valued member of the community. Learning: We encourage innovation, learning and growth. Excellence: We act ethically and with integrity in all that we do. We celebrate the best in ourselves and others”. [16]
Vela Canada	“Relationships are the most important component of a person’s life. All people have the capacity for self-determination. All planning and decisions made with or for a person must be based on their strengths, wishes, needs, and interests. All people have gifts to share with those around them and their wider community”. [17]

shows the values of each case organization. Below, we describe each organization.

2.2. Case Descriptions

The Planned Lifetime Advocacy Network (PLAN) is a non-profit organization founded in 1989 to help families secure the future for their loved ones. PLAN was established by parents after experiencing the limitations of sole reliance on paid supports to create a good life for their sons and daughters with disabilities, and out of a desire to secure a positive future for their children, even after they have passed away. PLAN builds personal support networks, engages in planning for an individual’s future, and brings families together for mutual support, learning and community leadership. PLAN staff work with families (inclusive of the person with the disability) to help them define what a good life looks like, think beyond reliance on professional services, and obtain the support that they need to achieve their goals and priorities. PLAN is based in Vancouver and its primary service area is BC’s Lower Mainland. This localized focus allows PLAN to develop deep, community-rooted relationships. PLAN serves individuals with disabilities, with services delivered within the family context to acknowledge the family’s role in the individual’s life. This approach reflects PLAN’s commitment to being guided by families and remaining accountable to them. PLAN chooses not to rely on core government funding based on family leaders’ desire to remain unbeholden to the changing financial or ideological values of governments. This financial model differs from the other two organizations in this study, which are both primarily government-funded. At the time of this study, PLAN has 26 staff members, including one Executive Director, one Family Advocate, one Lifetime Membership Coordinator, four Mentors, 18 Community Connectors, and one Director of Family Leadership and Support. All of the Mentors and Community Connectors are intentionally part-time, in recognition that network building often happens on evenings and weekends. PLAN also chooses to limit the number of Lifetime Networks it supports to under 100 in the belief that limiting the networks to be developed and maintained is necessary for the required level of intimacy and depth of relationships at the core of PLAN’s work.

Vela Canada (Vela) is a non-profit organization founded in 1985 that supports individuals with disabilities and their trusted others to take greater control of their lives. They do this by providing information and mentorship, and by exploring ideas and options that can lead to customized and creative supports. This includes walking people through the process of forming what they term a “Microboard”, a small non-profit board comprising family and friends who are committed to the wellbeing of the individual at the centre of the Microboard. Vela also supports people to access Individualized Funding, which is a financial resource given to an individual with disabilities, or their representative, by Community Living BC (CLBC) to help pay for or create needed disability-related supports in British Columbia [18]. Vela works toward its mission to promote and secure innovative and individualized community options for people with disabilities by providing: support and encouragement to define what a good life means; person-centred planning; networking opportunities; information and education; facilitated problem solving; service development; budget creation; negotiation support; sample employment documents; and assistance with paperwork. Vela Canada is based in BC, providing services across the entire province. This extensive reach enables them to support Microboards in diverse communities across the province. Regarding its client focus, Vela provides support to both individuals with disabilities and their Microboards, ensuring that family members involved in the Microboard respect the individual’s preferences and needs. At the time of this study, Vela is operating with eight employees, which includes two Co-Executive Directors, a Special Projects Coordinator and five Mentors and are actively supporting 178 Microboards. Over the years, Vela has supported the establishment and ongoing needs of more than 1000 Microboards.

posAbilities is an organization founded in 1998 that offers a range of formal supports to people with developmental disabilities (including behavioural consultation, employment, and housing supports), across over 40 programs and initiatives. At the time of this study, posAbilities is supporting approximately 2000 individuals with disabilities (both adults and children) in both urban and rural areas of BC, including Metro Vancouver, the Sunshine Coast, Vancouver Island, and the BC interior. posAbilities primarily serves individuals with developmental disabilities, providing a variety of person-centred services to support them and their families. posAbilities is the largest of the three case organizations, with approximately 600 staff, and most closely resembles a “traditional” formal disability service provision organization. posAbilities offers a unique perspective as a formal support organization that espouses a core value of innovation in the formal service sector. Some of these innovative efforts are tied directly to this study’s research questions on integrated supports, as they involve engaging more deeply and meaningfully with families and circles; catalyzing community capacity; bridging people to community; and enabling the conditions where people can cooperate to solve problems and realize opportunities [19]. To enable more consistent comparison across organizations, we chose to bound the posAbilities case around one component of its activities: “Building Caring Communities” and Curiko, a program and service platform that the organization uses to foster the creation of natural supports for adults with developmental disabilities, beyond the traditional formal support services that it provides (e.g., behavioural consultation, employment, housing, and day programs).

PLAN and Vela do not solely cater to developmental disability-related support like posAbilities; however, persons with developmental disabilities (and their families) do make up a significant portion of the people they support.

2.3. Data Sources

We drew from multiple data sources to seek a comprehensive understanding of how each organization enables supports, and to allow cross-validity checks and triangulation of findings [20,21]. Specifically, we completed a comprehensive document review, virtual qualitative interviews, and in-person and virtual focus groups.

Table 2. Data sources.

Case	Documents Reviewed	Semi-Structured Interviews	Focus Groups
Planned Lifetime Advocacy Network (PLAN)	Website, Community Connector Handbook (2018), Grant proposal information (2019), Reflections on Common Threads (2014), Community Connector and Mentor monthly updates (2020), Facilitators Guide: Hosting Family Meet Ups (2020), Family Meet Ups presentation (2020), Lifetime Membership Agreement, Surmountable Chasms: Networks and Social Innovation for Resilient Systems (2011), PLAN and PLAN Institute, Budget (2021), PLAN team meetings overview, Planning for a Good Life Monitoring Tool (2018), Planning for a Good Life Facilitator’s Guide, Social audit (2005), The Story of PLAN, RDSP case study	5 Family Members 2 Community Members 4 Staff Members 3 Persons with Developmental Disabilities	2 Focus Groups (3 people with developmental disabilities, 1 family member, 3 program staff, 6 thought leaders)
posAbilities	Website, Accreditation report (2021 and 2022), Financial statements (2019–2021), Newsletters (various), Head office reporting structure, Program reporting structure, Outcomes management report (2021 and 2022), Strategic Plan (2018–2021), Situational analysis summary report (2022), Overall directions and goals (2023), Presentation slides to CLBC (June 2023), Consumer Handbook (2022), Pandemic Learning Project (2021)	3 Family Members 1 Community Member 4 Staff Members 4 Persons with Developmental Disabilities	3 Focus Groups (6 people with developmental disabilities, 5 family members, 6 program staff)
Vela Canada	Website, Annual reports (2014–2015 and 2017–2023), Newsletters (various), Microboards, Social Capital and Quality of Life: Final Report of a Two Year Qualitative Inquiry (2020), Lifestyle Quality and Person-Centred Support: Jeff, Janet, Stephanie and the Microboard Project (2015), Microbaords Review: A Report to Vela Housing Society (1994), Microboards and Individualized Funding (2015), More About Microboards (2015), Principles and Functions for Microboard Members (2021), Vela Microboard Association of B.C. Constitution, A Brief History of Vela presentation, Vela Canada Charity Profile, A Summary of Work Vela Microboard Association Completed for the Benefit of All Community Members, Claiming Full Citizenship presentation (2015)	3 Family Members 2 Community Members 7 Staff Members 3 Persons with Developmental Disabilities	1 Focus Group (4 family members)

provides an overview of each organization and the sources used to craft an understanding of each case.

Documents. Each organization provided us with documents they believed to be relevant to our understanding of the organization. Additionally, research team members completed google searches for publicly available information about the organization (e.g., websites, blogs, reports). In the course of the analysis, we also sought access from our organizational partners to additional documents (e.g., an organizational report referenced elsewhere) as needed. These documents were intended to deepen our understanding of each case context, and to triangulate information provided in the interviews.

Interviews. We conducted semi-structured zoom interviews with various groups who held knowledge of and experience with each case organization (e.g., family caregivers, persons with developmental disabilities, case organization staff, community members). While most interviews were conducted on an individual basis, three interviews were carried out in pairs (i.e., family members). The case organizations offered support to the research team to identify relevant informants to interview. All participants were given a study information sheet and provided oral informed consent prior to the commencement of the Zoom interview. Interview questions focused on understanding actions that the organization took to enable access to relevant formal supports as well as how the organization enabled natural supports to flourish and the impact of the supports on the individual.

Focus Groups. Following initial case write-up and preliminary analysis based on the documents and interviews, we conducted 2–3 focus groups per organization to gain perspectives on preliminary findings and to probe for further information about any identified gaps. We explored emerging case findings with both homogenous participant groups, as well as heterogenous groups (e.g., family members, persons with developmental disabilities, and staff all together in one conversation). Similar to interview participant recruitment, the participants in the focus groups were recruited through the key organizational partner liaison at each site. The participants from the semi-structured interviews were excluded from focus group participation to enable diversity of perspectives for each case. Both interviews and focus groups were audio-recorded and transcribed for analysis.

2.4. Analysis

We completed analyses in multiple phases:

Phase 1: Individual case analysis. Using a uniform template, we used interview and documentary data to develop a case description for each organization. We filed early and final versions of case descriptions to be able to reflect back on the research process, including preliminary analysis and results, at various stages. The final version of each case analysis was coded by the first and last authors independently before coming together to discuss findings and determine preliminary themes [22].

Phase 2: Deepening Case Analysis Through Focus Groups. Next, we brought case descriptions and preliminary themes from Phase 1 to key persons linked to each case but who had not been previously consulted for this study (see focus group section above). We engaged in further discussions around the validity and implications of the findings from Phase 1, as well as around any gaps in researcher understanding of the case via focus group discussions. We embedded further data from focus groups into the case description crafted for Phase 1 to the final individual case descriptions.

Phase 3: Cross-case analysis. Again, the first and last authors independently reviewed each finalized case description to develop initial thematic codes and identify cross-case themes. In so doing, they explored the combination of factors that may have contributed to the experiences and outcomes of each case, sought explanation as to why cases were different or the same as others, and tried to make sense of puzzling or unique findings, and further articulate the individual case content [23,24]. The researchers then came together to discuss and agree upon the most salient findings across all three cases, and how these might be organized and represented in key themes. This analysis was then shared with and confirmed by all other study authors.

2.5. Consultations

In addition to the phased analysis, our study benefited from an iterative consultation process with key persons throughout the lifetime of this study. This consultation informed study design, data collection, and analysis. Specifically, the research team engaged a study advisory committee primarily comprising adults with developmental disabilities and family members of persons with developmental disabilities. This advisory committee provided important insight on data collection methods (e.g., offering critical feedback on interview and focus group questions), data analysis (e.g., reviewing preliminary case themes from Phase 1, asking probing questions, identifying gaps, and offering suggestions for areas of inquiry for the research team to explore further), and reviewing final case study findings. Additionally, the researchers continuously engaged organizational partners to ask questions and to probe emerging or uncertain understandings of the case sites. These key gatekeepers read and commented on numerous case drafts before their finalization, identifying any errors or gaps in understanding, and offering clarifying comments (or additional documents to support researcher understanding). They also reviewed and offered a final member check on the preliminary cross-case analysis, a process through which the key gatekeepers verified the validity and relevance of the findings.

3. Results

We found both similarities and differences across all three organizational approaches to balancing or integrating formal and natural supports for adults with developmental disabilities and their families. Integral to each organization’s approach was a focus on curating meaningful, multi-level relationships, and working flexibly and creatively to make larger systemic changes, such as developing innovative support models, advocating for changes in social policy, and fostering cross-organizational partnerships. Nonetheless, these organizations presented differences in how their funding models enabled them to foster natural supports, their particular approaches to maintaining and sustaining support networks, and how they approached innovation and/or system-changing initiatives. We organized our results into four main themes (Figure 1), Relationships at the Core of the Work; Creation of Natural Supports Through Formal Supports and Brokered Community Connections; System-Changing and Doing Things Differently; and the Impact of Funding Models.

3.1. Creation or Enablement of Natural Supports Through Formal Supports

Each case organization has two main approaches to their mission of strengthening and expanding an individual’s natural support network. One approach is to broker connections within the community, while another is to provide thoughtful and deliberate formal support to enable the maintenance of an individual’s natural support network. These organizations have variations in the intensity of their engagement while providing formal supports to enable natural support development and maintenance.

3.1.1. Paid Staff to Enable Natural Supports

Both PLAN and Vela foster and create natural supports through the development of a personal support network (PLAN) or a Microboard (Vela). posAbilities also focuses on intentional community-connecting programs that aim to bring together groups of people. This work is further explored in the relationship theme below.

Participants affiliated with all three case organizations indicated that formal supports are an important mechanism in facilitating natural supports. We observed in various instances that, for each organization, having someone paid to support an individual or their family member to navigate complex government systems, create long-term financial plans, or other strategic planning exercises on how to achieve an individual’s desired future actually paved the way for stronger and more secure natural supports. This is because it allowed groups of people to focus on supporting an individual based on an agreed-upon plan that emphasizes their desires and wishes, rather than becoming fixated on the “how-to” pieces that can otherwise occupy significant time and effort.

“…so we talk about all of the different pieces that could be put into the picture, so you feel confident—is your will up to date, do you have a representation agreement, what’s the living situation for you, what’s the future living situation for you? What have you thought about in terms of the finances when you pass away, is there a trust”?

(PLAN Staff 001)

All three organizations offer some degree of formal or traditional supports as part of their service provision. While posAbilities is one of the largest formal service providers in BC, the provision of formal supports is still an important component of the work carried out by the other two organizations, as well. In fact, a member of Vela staff indicated that approximately 80% of staff time is spent facilitating formal supports that are necessary to smoothly running natural supports, like supporting criminal record checks for Microboard employees or assisting Microboard members in navigating government funding policies (Vela Staff 004).

The participants also acknowledged that facilitating consistent formal supports, such as administrative support to hire paid workers, can be an essential step in helping an individual create relationships within the community. For example, a Vela Microboard, operating as a small non-profit organization, can hire formal support providers. Having access to consistent formal support providers can help an individual to develop routines in-community that enable them to develop further connections.

“Part of our plan is having adequate paid supports now, so that we’re avoiding crisis in the future, and recognizing that sometimes the paid supports also have a role in creating natural support in the community, because certainly support staff are often good at doing that bridging piece as well, but also requiring, you know, natural support to be woven in too… going, ‘yes, we’re going to use the paid supports XYZ, but here’s our goal for how they’re going to create natural support’”.

(Vela Staff 005)

3.1.2. Intensity of Touch and Duration

The intensity of engagement of staff with adults with disabilities and their families also varies over time and based on the unique personalities and needs of those at the centre of support. Within these circumstances, the organizations have different approaches to the amount of time they are able to spend with each individual or family. Neither PLAN nor Vela set a time limit on how many years they will support a client. In the case of PLAN, the focus is on brokered networks for one’s entire lifetime through “lifetime memberships”, often paid for through provisions in wills or trusts of the parents of the person at the centre of the support network. Meanwhile, posAbilities’ clients in the Building Caring Communities program are provided with community-connecting services for a maximum of one year, except for Curiko, which has no time limit. Individuals have the option to stay in the program slightly longer or can be re-referred for services, but they are not guaranteed a spot. The goal is that at the end of the year of service provision, an individual will have a plan and an adequate network of social support—the hope is that the year of support will build natural connections that will not rely on formal support workers to maintain in perpetuity. However, we do not have data on whether these relationships have been sustained after one year, and it was beyond the scope of this study to collect those data. Furthermore, both posAbilites and PLAN place a cap on the number of hours of direct support they can provide to a client, around 100 h per year for posAbilities and 6 h per month for PLAN ([25]; PLAN Staff 001). Alternately, Vela does not cap the number of hours of support that they provide to clients in a given month. According to Vela staff, the number of hours tends to naturally balance out across Microboards (Vela Staff 004). Additionally, each organization has staff that are dedicated to working with individuals and/or their families to determine what constitutes a good life, and how both formal and natural supports can be cultivated to attain it.

3.2. Relationships at the Core of the Work

Participants across organizations identified relationships as essential to the meaningful provision and integration of formal and natural supports. Perhaps most obviously, the focus on relationships was core to the community-connecting activities implemented at each organization (e.g., brokering relationships between individuals and their communities), but we also saw relationships as critical to how staff work with one another and value the attributes of service users of each organization. Below, we discuss various approaches to how relationships are fostered at different levels at the case organizations, including with staff members, support networks, community members, and across families.

3.2.1. Relationships with the Organization’s Staff and Their Target Individuals or Families

Staff at all three organizations worked to develop a personal relationship with individuals with disabilities and their families. The participants highlighted the value of each organization in terms of the staff who had impacted their lives. His posAbilities worker and his privately hired life skills worker are always there for him. They’re always there for me. They’re my security net (posAbilities Family Member, Focus Group).

Staff from PLAN, Vela, and posAbilities indicated that they foster relationships by showing empathy for individuals and their families, meeting people where they are both physically (e.g., in their home) and figuratively (e.g., what they personally need at that time), and making time for people when they require support, even during non-traditional working hours.

“PLAN workers… do interactions that are on the social, emotional level and I don’t think much of them have the thought, ‘oh she’s being paid to be here’—right? I so value that motivation”.

(PLAN Family Member 001)

“[Vela staff member] knew I was struggling… She called me at night and she was my therapist and my counselor and held space with me because she knew what I needed, and that’s the reason I’m here 23 years later. That’s the heart of the work they do. They respond when you need it. They get creative as creatively can happen, and they fight for you with people that you can’t fight with to help them see the light”.

(Vela Family Member, Focus Group)

3.2.2. Relationships Between Individuals and Existing Support Networks

All three organizations worked to foster relationships between individuals with disabilities and their existing support networks. For PLAN and Vela, the curation of a strong circle of social support for individuals with disabilities is the core focus of much of the work they do, although both use different models. For example, one participant from Vela indicated that their Microboard provided a means for her family and close friends to provide her support (Vela Self-Advocate 003). PLAN develops networks around a person with a disability, supports community members to be involved in these networks, and brings people and families together in communities of care for one another.

“People join networks because they genuinely care about the person at the center. Network members receive friendship as well as give it. There are many, many people participating in networks who have told us they receive more than they contribute”.

(PLAN Staff 001)

Both PLAN and Vela will meet with networks or Microboards to help facilitate discussions in the event of a conflict. Additionally, PLAN Connectors regularly send email updates about an individual to members of their network to help the group stay connected. PLAN and Vela believe that focusing on long-term relationships with individuals who care for the person at the centre of a Microboard or network will help facilitate supported decision-making in line with an individual’s desires and wishes, and provide a more stable future.

3.2.3. Relationships Between Individuals and the Wider Community

In addition to strengthening existing support networks, all three organizations also work to expand these networks. For example, through Building Caring Communities, posAbilities provides opportunities for people to be involved in their local neighbourhood, such as in community theatre. posAbilities also seeks to connect individuals with disabilities to their neighbours and community members using an online platform called Curiko. Through Curiko, individuals can sign up for an in-person or online experience, either one-on-one or in a group, hosted by a member of the community. The experiences often vary depending on the community members who are offering to host (e.g., book club, art journaling, guitar, hockey hangout, chess). Through this program, individuals can expand their social networks by meeting new people in the community.

“[Curiko has] been great because it is not only for special needs, it’s for anybody. It’s very open. You can go and do all these different activities and do things mostly at your passion…Whoever wants to check it out and you meet new people, you do different things that you’ve never done… I got to not only explore more of Vancouver that I didn’t know, but I got to make new friends, I got to do new experiences that I’ve never done, so it’s really been great”.

(posAbilities Self-Advocate, Focus Group)

3.2.4. Relationships Between Families

PLAN and Vela intentionally work to broker relationships among people with similar experiences by facilitating community-building events amongst members, like picnics, and BBQs. Additionally, Vela holds regular webinars called “Chats with Vela” where Vela staff provide an online platform for families to ask questions to both staff and other family members, and offers more tailored one-to-one connections when they see the need.

“We would say you know there’s two families that have got similar issues, they are grappling with something similar, get them in touch with each other so they could provide mutual support and learn from each other… [it] really helps people spark ideas with each other”.

(Vela Staff 004)

PLAN also facilitates opportunities for one-on-one connections for families who prefer to connect in smaller groups.

“I think [family-to-family connections are] the rock foundation of the whole body of work. It was those family-to-family, parent-to-parent connections 25 more years ago of a handful of parents that led to PLAN. It’s really the trust, the affection, the openness, the good communication, the sharing of challenges and joys, and not only sharing about our sons and daughters, but sharing about life in general, that camaraderie that comes from parent-to-parent connection”.

(PLAN Family Member, Focus Group)

3.2.5. Challenges in Sustaining Relationships

Participants from both PLAN and Vela indicated that challenges can arise in sustaining networks or Microboards. Family members also indicated that creating and nurturing natural support can be stressful and demoralizing if it does not go as planned.

Despite curating models of support to help secure an individual’s future, participants in our study indicated that most often, necessary support work for adults with developmental disabilities often still falls to parents or primary caregivers. Parents further indicated that in spite of creating infrastructure such as networks or Microboards that seek to directly mitigate that concern, parents continue to worry about who will step into their role when they are no longer able to provide care. Theoretically, a Microboard should continue on after the death of the individual’s parents; however, staff and families question whether this will translate into reality.

“It’s parents that have really done it all. They’ve had the other Microboard members, and depending on the board, they’ve given different levels of input and help but certainly it’s never been an equal distribution of most Microboards and the work involved. And the parents are still doing, you know, a full time, unpaid position to support their children”.

(Vela Staff 005)

Additionally, while PLAN’s network model works for many, some participants indicated that it can be time-consuming to maintain amidst busy lifestyles.

“It’s kind of really hard to hang out with my network, most of the people like work a lot…we try to connect couple times a month, but sometimes it doesn’t work out that way…”

(PLAN Self-Advocate 001)

3.3. System-Changing and Doing Things Differently

PLAN, posAbilities, and Vela all strive toward making systemic changes in a way that supports are provided for people with disabilities and their loved ones. This includes efforts to disrupt traditional methods of providing supports, conduct cross-organization collaboration, engage in education or advocacy at different levels, and explore alternative and better-suited solutions to improve support for individuals and families within existing systems.

3.3.1. System-Changing Initiatives

All organizations engaged in social policy and system-changing initiatives to better enable support for people with disabilities and their families, with an emphasis on community-based living. However, the organizations took a slightly different approach to these initiatives. Vela was a pioneer in that it was the first organization to introduce the idea of Microboards to the province, and in Canada more generally. Vela’s efforts in British Columbia have contributed to changing provincial social policy to enabling an environment where Microboards can flourish—specifically, allowing Microboards themselves to serve as funding transfer agencies so that they might receive government funding (Vela Staff 004). This provincial funding model is not reflected across the country.

As it relates to inspiring change in the formal service sector, posAbilities and two other BC-based traditional support organizations created a formal partnership in 2013 with a social policy and innovation organization, InWithForward, to engage in social research and development in the community living sector. This partnership was later formalized as Degrees of Change. In 2020, they published a book that described their various and ongoing efforts at system change, from addressing skills and methods gaps to addressing cultural conditions required for change. It includes an appraisal of all the many challenges involved in creating and embedding alternatives to traditional services, as well as a set of core tensions or “stretches” that they believed could lead to better outcomes for persons in social services [19]. This collaboration across formal support organizations (which often compete for funding and resources) was described by interview participants as uncommon.

“I think the deep partnership that posAbilities has with you know, the Burnaby Association for Community Inclusion, Kinsight, as well as InWithForward, is particularly… I haven’t really come across another partnership like that within organizations, and I think particularly social service organizations partnering with the design agency like InWithForward, I haven’t quite seen some of that before in such a depth”.

(posAbilities Staff 005)

PLAN, which is not government-funded for its core operations, engages in advocacy efforts in which staff advocate to the government for social policy change or have resulted in independent movements, such as Siblings Canada, Disability without Poverty and the installation of the recent National Disability Benefit [26]. PLAN was also a driving force behind discussions that lead to the creation of the Registered Disability Savings Plan (RDSP), which helps provide long-term financial security to people with disabilities [27]. PLAN also co-founded the “coalition to reform Adult Guardianship legislation,” leading to work with the provincial government to establish the Representation Agreement which enables adults to receive decision making support without having to go to court or be declared incapable [28]. Through engagements nationally and globally, PLAN has also created a network of affiliate models that operate independently but are linked to PLAN’s mission, vision, and values.

Conversely, Vela, which is primarily government-funded, does not engage in such overt advocacy as PLAN, but provides education to both clients and government staff to better support initiatives toward community-based living. Vela staff mentor clients to be able to navigate the systems themselves, and at the larger systems level, Vela works to educate government staff around the concept of Microboards and independent living. This education around the value and importance of Microboards is important due to the constant change over of government staff, particularly in the more remote regions (Vela Staff 004). Vela provides this ongoing education to encourage reasonable government funding for all Microboards, and to ensure government staff recognize the critical role both Microboards and Individualized Funding play in the lives of people with disabilities and their loved ones. Vela has also engaged in system-changing through cross-organizational partnerships. For example, Vela joined with the Family Support Institute of BC to bring their insights and support into the re-development of Support Worker Central, an online platform to connect individuals with disabilities and their families to support workers based in BC.

3.3.2. Flexibility to Do Things Differently

The mentality of change-making—both at the individual and systems levels—requires flexibility and thinking creatively within complex systems to provide supports to families.

“Vela is very much about, well, what are the dreams? And, how can we help you work through the system to make those dreams come true?”.

(Vela Family Member 002)

This flexibility requires being able to quickly adapt to changing life situations or plans and the changing political or social environment. For example, when the government of BC changed its policy on criminal record checks for support workers, Vela staff immediately began developing guides to help families adapt to these changes. It is important to note that perceived level of flexibility varied across organizations, with PLAN staff indicating significant freedom to adjust and change based on what a person or a family needed at any given time.

“… we can pivot in a second without any approvals, without any paperwork, without new proposals. I think the team has the autonomy to do what they or we can do what we know is best. I’ve been in lots of other jobs where I’m like, I just want to give this woman a hug or I just want to stay for five hours and have tea, and at PLAN we can do that”.

(PLAN Staff, Focus Group)

On the other hand, posAbilities staff characterized greater challenges in true flexibility, citing organizational and provincial regulations as well as accreditation and specific workforce requirements that can sometimes raise barriers to acting as flexibly as might be required in some situations.

An organization’s level of flexibility is also related to their ability to be innovative in their approach to providing supports. Underpinning posAbilities’ values and vision for a “good and full life for everyone” involves rethinking how innovation plays a role in pushing current boundaries and norms around formal social services for people with disabilities. posAbilities has a “Director of Innovation” role in charge of asking “what’s next?” for social services to catalyze fresh thinking and approaches that go beyond meeting basic needs [29] (Ep. 1).

“When you deal with a lot of government agencies, you see the opposite of what posAbilities is trying to do. So many of them talk about thinking outside the box and nobody ever does… I think posAbilities is willing to look at different ideas, willing to look at different possibilities to try things, possibly to fail, but to try again”.

(posAbilities Staff, Focus Group)

However, it can be challenging for innovation to thrive amidst systemic barriers, such as the practical reality of constant organizational change (including staff capacity), navigating existing organizational policies, and finding the funding to be sufficiently flexible. Some frontline posAbilities staff felt like they did not truly have the time, mental space, or training to be able to think in an innovative and disruptive manner, or sustain innovation efforts.

“… being a very big organization, true innovation is really, really hard and complicated and emergent and unexpected. That’s something that such a big frame, sometimes has a hard time accommodating or carrying because it requires stepping outside of lines and procedures and coloring in different ways that for the people at the top that are quite far away at this point from the people doing the work on the ground, sometimes it’s hard to step outside of that and be like, ‘Well, we want innovation, but we have all these procedures’, for example”.

(posAbilities Staff, Focus Group)

3.4. Influence of Funding Models

The differing funding models for each organization present their own opportunities and challenges. For posAbilities and Vela, it can be challenging to sustain consistent funding across changing political landscapes. In fact, when government funding has fluctuated in the past, Vela’s previous Executive Director took on consulting roles nationally and internationally to supplement revenue and sustain the organization’s operation.

Meanwhile, PLAN operates primarily from funding from members, private companies, and foundations, with occasional project-based work funded by the government.

“PLAN wanted to save space for unpaid relationships through its work, because as soon as you become government entity or receive core funding you are doing their work, you are meeting their accreditation requirements, you are measuring units of services, etc. and we cannot do our work that way”.

(PLAN Staff 005)

While this financial model provides the organization with flexibility to operate, it also requires investing significant time into applying for grants to supplement revenue generated from lifetime membership fees. These financial models also impact who the organizations can reach with their services. PLAN’s lifetime membership requires an investment of CAD 3600 per year, which enables a member to access all of PLAN’s services, with the knowledge that PLAN will continue to facilitate meaningful supports and cultivate relationships within personal support networks to support the focus person following the passing of their parents. However, this membership fee could make PLAN’s services inaccessible to many families who are lower income:

“One of the things that’s been on my mind for many years is all of the people that PLAN doesn’t support. Because we are a paid-per-service organization, that there are a lot of people that are falling off, that don’t have access to our services. … I know that the will is there with PLAN to be supporting people who can’t necessarily pay the full amount that we charge. I know that the amount we charge is not unreasonable because it doesn’t even pay for how much we spend on supporting that network… I would never suggest that we take government money because, like I said, it frees us up to be able to support people in ways that are free from that regulation. It would be great if we could figure out a way that we could support more than just our members, which are, primarily, I would say, middle-class people who can afford our membership fees”.

(PLAN Staff, Focus Group)

Conversely, since posAbilities’ services are government-funded, they are available to a much wider population. However, their service model involves Community Living BC funding services for adults with disabilities and offering individuals referrals to the service provider(s) of their choosing. Notably, the wait to receive government-funded services for posAbilities can be quite long. One participant indicated that her son had been on a waitlist for 10 years prior to receiving services (posAbilities Family Member, Focus Group).

4. Discussion

Each organization provides support in different ways but have some key uniting features. These include fostering relationships and striving to have the flexibility to best respond to a person or family’s needs at a given time. Through various means, the case organizations also sought to make systemic changes in the delivery of disability supports, leading to the development of organizational partnerships, as well as advocacy, education, and innovation initiatives. However, the degree to which the organizations have felt they have been successful in their mission to do things differently has depended on several factors, including the organizational structure and funding.

Notably, all participants indicated that one of the most valuable parts of engaging with the organization was the personal relationships they developed with staff. Staff across all three organizations fostered, enabled, and prioritized the relationships they developed with individuals and families they serve. The participants emphasized that staff took the time to get to know someone on a personal level and empathetically listen to how they could support them. Previous research on the importance of trusting relationships between staff and individuals with disabilities is limited, but includes insights on finding a balance between cultivating supportive, friendship-like relationships and maintaining professional boundaries to ensure comfort for all involved [30]. Johnson and colleagues identified five essential processes for fostering positive relationships between staff and people with severe intellectual disabilities, including “recognising individuality, sharing the moment, connecting, feeling good, and sharing the message” [31] (p. 327). Johnson and colleagues also noted that formal support staff tended to view their interactions with clients as separate from their task-oriented duties, and organizations may need to consider updating job descriptions to help staff understand that fostering relationships is a fundamental part of their roles [32]. Future research might further investigate what makes relationships between staff and individuals with disabilities and their families (while observing professional boundaries) successful, potentially exploring the specific organizational culture, practices, and funding structures that enable the development of these relationships.

Our findings indicate that disability-related support organizations should not neglect the importance of fostering strong relationships between clients and staff. Relationship development, however, takes time, and we recommend that organizations commit to relationship development by enabling organizational staff the time and flexibility necessary to cultivate meaningful relationships that also respect staff needs for professional boundaries. Additionally, government and other funders of support organizations should consider the necessity of relationship cultivation in their funding models—including relationship development within their scope of funded services and allocating sufficient time and manageable caseloads for meaningful relationships between staff and clients, as well within the organization and across other like-minded organizations.

Flexibility in the provision of supports is another critical element in how the case organizations operate and factored strongly among the participants’ desires for ideal integrated supports from these organizations. However, funding often dictated the organizations’ capacity for flexibility in service provision. For example, constraints in funding or other systematic levels (e.g., insurance requirements) proved to be a barrier in how truly innovative posAbilities could be in its service provision. Individuals and families expressed the need for flexible funding since desires, life circumstances, and socio-economic contexts are not static. These findings are echoed in a systematic review of global sources conducted by Fleming and colleagues, which calls on policy makers and funders to embrace an ethos of opportunity regarding individualized flexible funding and its benefits for the human rights of people with disabilities as well as its potential for cost-effectiveness when properly implemented [33]. We recommend that funders and policy-makers explore how to better enable organizations to provide flexible supports that support the self-determination of individuals with disabilities, and enable quick pivots in support provision when life circumstances or personal preferences inevitably change.

The cases also demonstrate that there is often value in using formal support to broker natural connections. While these natural supports can develop organically over an individual’s lifetime, research shows that many adults with disabilities and their loved ones feel socially isolated [34]. A formal touch, provided by organizations like those included in this case, can not only help broker new connections between other individuals and families, but also help identify people who may already be a part of an individual’s life and find pathways to create and maintain networks over time. The case organizations differed, due to both service design and funding factors, on how long this formal touch to broker and support connections should be provided (e.g., lifetime vs. 1 year). Future research should explore the various approaches that organizations take to broker and support these networks, including the role of a formal support broker in interacting with and developing natural supports. We hypothesize that relationship brokering is an ongoing process, and that one year of relationship brokering is insufficient, and suggest conditions to enable long-term, ongoing network maintenance would be ideal. Furthermore, our findings indicate that maintaining networks or Microboards still places a significant burden on primary caregivers despite efforts to share responsibilities. Parents expressed concerns about the long-term viability of these systems after they can no longer provide care. Future research could explore approaches to reduce this burden and improve the sustainability of natural supports.

Cross-organizational partnerships are also an important element in the activities we observed at each organization. No one organization is able to single-handedly meet the vast support needs of its constituencies. The case organizations showed the wide-ranging benefits of deep engagement with other organizations to achieve good lives for all. These partnerships have led to innovation in the delivery of supports and strengthened ability to initiate change within the Canadian support sector, for example, posAbilities’ Degrees of Change partnership and PLAN’s participation in advocacy collaboratives.

The importance of organizational partnerships is also highlighted in other geographical contexts. For example, the governance framework of the National Disability Insurance Scheme (NDIS) in Australia underscores the importance of partnerships between human service organizations to enhance quality and sustainability of support provided to individuals and offer them more tailored and flexible support options [35]. The factors that either facilitate or hinder inter-organizational collaboration include but are not limited to policies, financial resources, the roles and values of the organizations, organizational systems and processes, and the presence of trust and interpersonal connections [35]. Acknowledging these factors is essential as they significantly influence the success of the collaboration. In Canada, we recommend organizations create an organizational culture and structure that values the development of organizational partnerships seeking to do things differently, advocate, and create effective change in providing services to people with disabilities and their families. Canadian policies could support these efforts by providing funding opportunities or incentives for collaborative initiatives between support organizations. Overall, these collaborative efforts can help achieve holistic outcomes and greater impact.

This study is not without limitations. First, since this study was carried out in partnership with the case study organizations, our access to both organizational documents and study participants was mediated through our organizational partners. As a result, there may have been gatekeeping around the information we received about each case, and the participants who were selected to participate in semi-structured interviews and focus groups [36]. This mediation poses a risk of bias in the data collection process, potentially affecting the study’s findings. We attempted to mitigate the effects of gatekeeping by having intentional discussions with our organizational partners around information we felt may have been missing from the case. Additionally, we sought to triangulate our understanding through multiple sources, and used focus groups to pull out critical perspectives on the organizations.

Second, we recognize that we chose different boundaries for the posAbilities case organization in comparison to PLAN and Vela. Although we did not focus our analysis on posAbilities as a whole, we believe that intentionally focusing on the “Building Caring Communities” service area of posAbilities offered a better level of cross-case comparability than had we set the same “overall organization” boundaries for each case.

Third, this case study included only three organizations located mostly in mainland British Columbia. The unique characteristics and local socio-economic and cultural context of these organizations may not be representative of other support organizations and do not offer generalizability about support in the province or the country. Nevertheless, we believe that the in-depth exploration of practices at these three organizations is illuminating in and of itself about how formal and natural support brokering is implemented in some instances.

Finally, these organizations have a more generalized mission to serve people with disabilities and their families, and do not have explicit approaches to target equity-deserving populations or directly tailor services to specific cultural groups. Although equity-deserving populations are included as the clientele of these organizations, the organizations do not specifically tailor their supports to meet the needs of specific groups, which is very likely when implementing from colonial and white-majority models. As such, our research did not determine specific nuances around the balance of support for Indigenous people, immigrants to Canada, racial minorities, LGBTQIIA+ people, and other marginalized communities. This represents a gap, as the diverse needs of individuals with developmental disabilities require culturally responsive and inclusive approaches to supports and services. Future research should prioritize Indigenous-led and other support organizations targeting specific communities in Canada to bring to light how they operate to serve their populations., including lessons and practices that other organizations, such as the three at the focus of this manuscript, might more intentionally integrate in their own work.

5. Conclusions

People with disabilities and their loved ones often require a personalized combination of formal and natural support that often changes over time. Organizations, like those explored in this research, are an important piece in the overall equation of support and provide useful insights into understanding the challenges and opportunities in optimally interweaving formal and natural support. Nonetheless, these organizations are only one piece in a complex system that must be more closely examined. Future research is needed to continue to explore the combination of both formal and natural support with a specific emphasis on the perspectives of diverse populations within Canada. Continuing these research efforts will play a critical role in understanding and reshaping the Canadian socio-political context to support all adults with disabilities and their loved ones’ access to the types of support they need at the right time to live the life they desire.