Thank you, once again, to all those who took the time to participate in the April 24th, Supported Housing—IDEAS summit. As the report below shows, the information and learning that came from that event were significant, and the knowledge in the room was able to paint a clear, and nuanced, picture of the ingredients for supported housing in living a good life. This event saw almost 100 people from across the supported housing landscape come together for a full-day of facilitated conversation and harvesting of their information and knowledge through an appreciative inquiry model.
The day began with opening remarks from Autism Nova Scotia’s Executive Director, Cynthia Carroll. She outlined how everyone in attendance is invested in creating supported housing solutions for individuals with disabilities in this province, their families, community organizations, advocates, service providers, and government.
AutismNS sees a variety of needs, and desires that span across the constellation of ability—and this is by no means unique to autism. In fact, it would be safe to say that everyone at the summit would support the idea that the needs persons who need supported housing can vary dramatically, and that only an individualized approach to supported housing can act as the soil from which any ideas or solutions can grow.
This was, unsurprisingly, as it was one of the evidence-based conclusions of On the Autism Spectrum in Nova Scotia: Reviewing the Evidence for Supported Housing Models. That report dug into the evidence-based best practices for in-home and residential support services, emphasizing “wrap-around” supports needed to address the unique, though by no means exceptional, needs of individuals with autism, as with other developmental disabilities.
The report also noted that supported housing is most effective when the brick-and-mortar housing needs of individuals are connected with, but still distinct from, the supports for persons with a disability; that both appropriate supports and housing options must be in place to achieve any quality of access to supported housing. But, importantly, any arrangement of supports and housing is most effective when the process starts with an exploration of the needs and desires of individuals through a person-directed plan. Moreover, it also found that supported housing systems are most effective when their success is measured against how it contributes to a good “Quality of Life”. Such a person-centered system focused on quality of life is not only more humane, but it is also more navigable and sustainable and avoids the significant costs associated with pushing off or deferring expenses for supporting someone in the way they need it, when they need it. Successful transitions and leading a quality life is only possible when there is a range of transparent options for supports and living in the community. However, what do those options look like? And how do we get to them?
There is, no doubt, a significant gap between the system we have and the one we would like. The question we are hoping to start to unpack today is how we can, working together, to move toward the latter, and in a way, we can do it together. Our challenge today is not to agree on all things about the ideal alignment of resources and efforts in the system. Instead, accepting that “person-centered” and community living are the basic goals for a supported housing system, our immediate challenge is to ask how we can work toward them, and when can we do it together. We hope today helps all of you, and us, leave with a clearer understanding of the challenges before us and the solutions we might all work to build together. Cynthia then outlined the Four Anticipated or Hoped for Outcomes for the event.
1. Unite a community interested in Supported Housing including individuals and families, community organizations, service providers, and government.
2. Continue to grow leadership capacity for person-directed planning, practices, and services.
3. Build an understanding of community and system strengths, barriers, and suggestions for increased access.
4. Identify actionable ideas that can be further developed at and leading up to day 2 in October.
Next, Michael Kendrick spoke to the key ingredients for optimal supported living and housing, and the key commitments from advocates, families, service providers, government, and community-based organizations or advocacy groups, he proposed are needed for structural and significant progress to be achieved in supported housing in Nova Scotia and in most landscapes.
IDEAS Summit Speaker Michael Kendrick shares the presentation that he delivered on April 24th's Supported Housing Summit event.
After listening to the opening remarks and Michael Kendrick’s talk, participants were asked to record, on small cue cards (that were put into the pots at the center of the table) their curiosities, hopes and expectations for the day.
Participants particularly focused on options and opportunities and the hope that the event would give them a chance to learn about supported housing and options, models, funding and the system; learn about needs in the community and better network and connect to communities of practice to continue learning.
However, the most prominent area of curiosity was if the event and larger discussions or collaborations might provide the knowledge and awareness needed to start breaking down or combating barriers to housing. For some, this meant breaking down barriers between those parties, each represented at most tables, interested in seeing supported housing thrive. For others, it meant gaining a fuller understanding of the priority issues and areas where work can be done to build a better system, or how to raise awareness about the growing need for supported housing. For others, the focus was on gaining awareness about, and working towards, best practices for supporting people with disabilities in supported housing.
While Awareness and Learning to break down barriers or develop best practices was the most prominent theme, the desire to develop tighter working connections and a plan with concrete recommendations, actions and next steps was a close second. The call for a plan, with concrete steps to facilitate immediate and universal access to housing, was a prominent and recurring theme throughout the day. And some hoped for or were curious if this initiative would be able to help move government to a more participatory, responsive and collaborative role moving forward.
Importantly, several participants also said they were curious to see how a system could be built around truly individualized or person-centered supports that helped people with disabilities live and thrive in their communities.
Next, participants were asked to centre themselves for the discussion to come by reflecting on and recording what matters about home to them, not as professionals or service providers, but as people. Answers from this section revolved around two main theme groupings.
First, most tables and individuals spoke to the emotions and feelings that are fundamental to feeling at home. Participants said that a home was a place where people could be happy, safe and comfortable, a place that is welcoming to the individual and others visiting, and a place that balanced predictability with flexibility, allowing an individual the choices and options that create a sense of freedom and autonomy.
This theme of autonomy, for some focused on the importance of a home where we don’t have to ask for the things that many of us take for granted as part of home life (such as access to appliances, or certain foods, or other home-life goods) as well as the right to the same chaos that we all feel in our home lives at times.
This was part of a broad theme from those with and without disabilities at the event, pointing to the importance of home as a space where we feel our autonomy is respected and central through decision making and through an appropriate environment that accommodates for any particular daily needs—but not a medicalized or clinical feeling space and supports us in a way that makes individuals feel disabled in their own homes. These feelings represented for many the core of home as a “Place to unwind and feel like you belong,” and “a space and place that reflects who we are.”
The second related major theme grouping to emerge out of the feedback was the focus on the environment and relationships that make it feel like a home: Some participants gave important feedback about the arrangement of the environment as key; they focused on the need for non-segregated living, private and intimate space in the home, adequate support staffing, access to outdoors and green spaces, and a room of one’s own where they can lock their door if they wanted privacy or to be alone.
Some people also focused on how a home is made up of a larger community that includes neighbours and neighbourhoods, and which is accessible throughout, making a broader community life more possible.
Perhaps most importantly, many of the participants focused on how home, for them, is their relationships with family, kids, and pets, which forms a bedrock of love and support for many of these other elements.
Keeping participants focused on what people want in their lives and their quality of life (rather than only discussing what services are available) the next section of conversation asked participants to listen to a story (click here to see the stories) of a composite individual. There were five stories distributed among the ten tables, with each story being discussed by 2 tables of 8-12 participants.
Participants were asked to imagine what that person wanted and needed to live in their own home. More importantly, participants were asked to focus on “What” a person wants rather than “How” services can be delivered. This opened the conversation to fundamental ideas about what would and could be needed to live in a supported home, with facilitators asking four sub-questions:
1. Self-Determination: What is important to the person? How could the process support his/her voice to be heard?
2. Support: What types of personal support does the person want to live a quality life (people involved, unpaid and paid assistance from people)?
3. Resources needed (information, funding, technology)?
4. Communities’ involvement and readiness – acceptance and appreciation - what opportunities need to be there?
Moreover, participants were asked: What are the strengths and opportunities? Any gaps? How can we overcome challenges or flip them into opportunities?
Broadly people identified Supports as the prominent component of securing a good quality of life. With over 24 responses in this section of the discussion, what was remarkable was the diversity of supports identified by the participants. Some groups recorded on the intensity of needs, from higher levels of 24/7 supports to remote or daily check-ins. Other groups identified the diversity of support types such as needing life coaches, birth control, and basic needs or personal care “cheat sheets,” to more elaborate program plans, help with varying levels of medical support, or access to a navigator that could help them access the support they needed when they needed them. In this vein, most groups that looked at support shared a belief that support should be individualized and that support should respond to the needs of the individual rather than be pre-defined and an individual expected to adapt to those. Several tables noted that it was important that support not be over-prescribed or medicalized. And several other tables focused on the importance of technological and built accommodations as an extension of the home—including technological support such as, non-PX micro boards, Smart homes, and cellphones (which can often facilitate a dramatic increase in independence skills for many).
Directly related to this last sub-theme of individualized supports, the next most prominent theme was Person-Centered. In the context of quality of life, this was a complex theme. Some people saw this as safety, inclusivity, an engagement with the individual's interests, and engaged decision making. What they all shared, as a theme, was a sense that the home and personal support should facilitate and build autonomy, wherever possible to help make the individual an active driver of their own life through engaged decision making. This, it appeared across many tables, meant a full move away from any form of institutionalized or large congregate living structures.
Of almost equal importance were Relationships, including Family relationships, Friends, Partners, Roommates, and broader Community relationships. For most participants, the theme of relationships connected back to the importance of home as a space and place for autonomy—a space to be intimate, vulnerable, be listened to, take risks and try new things. It also connected to home as a place where one needs to belong, and that meant for many an acceptance of their home and life in the broader community.
“Having Value” was the most prominent throughout the conversation in this section. For many, being valued meant being part of reciprocal relationships where the people and community around, and helped and gave, and the individual had the autonomy and opportunity to contribute and give back—a core action in building community. Some tables discussed, having purpose and happiness, which meant that individuals would have to have substantive ways of contributing to their home and community lives—and not be hidden from the wider community.
Drawing from the collective knowledge of self-advocates, families, service providers, community organizations, and government representatives at each table, participants were next asked to identify the strengths and opportunities that that individual may experience, as well as any gaps, and how those could be flipped into opportunities?
Conversations about gaps were pointed in their observations, and remarkably consistent. The gaps that emerged can be divided into five broad themes: 1. Options (or lack thereof), 2. Systemic Barriers, 3. Transitional Challenges, 4. Assumed Incompetence, and 5. Lack of Education and Training. What creates a quality life for those who want supported homes: Harvest ThreeReflection on Curiosity Questions: Harvest One
Several tables identified the lack of clear points of entry for support on how to navigate the system, “where to go”, and a lack of available support workers who could assist in advocacy and composing support structures. The “fit” of housing opportunities was another subtheme that emerged at several tables. At some tables, that focused on the lack of options in the existing “stock” of places and spaces, which too often meant people were being “placed” in an ill-fitted home that could be a poor match with housemates, or with the support structures already in a home and, in some cases, these dynamics could create unsafe living conditions. This lack of control was another sub-theme that wove through many of these other points; a lack of control over where one was “placed”, how they would continue to not only survive but thrive in their personal development and how they would get around to the broader community were all identified as significant gaps.
This connected to the next most prominent theme at the tables; systemic gaps. The most discussed systemic barrier was the lack of adequate funding, which many connected to a larger discussion of root causes in policy barriers, including the legislative piece around the “Homes for Special Care Act”. One table articulated that the system was too rigid, while others noted that these systemic gaps showed up as unclear waitlists, difficult and complex eligibility criteria, a lingo that is often difficult to understand, and difficult to navigate bureaucracy. Two tables noted that many of these gaps were even more pronounced in rural settings.
The third most discussed theme connected to the earlier conversations around navigation and lack of systemic supports around transitions. Several tables pointed out the significant challenges in moving from the supports one received in the education system to the “adult supports” space, once you leave high school. For many tables, the discussion about any transition, at any age or stage, evoked anxiety and fear about the uncertainty of moving from one arrangement to another. And some tables noted that the gap around transitions was not just around what we would presume are the significant transitions (such as moving to a new home, finishing school, or changing communities). Some tables also noted that high turnover in caregivers or support workers, and inconsistency in supports created its own transitional challenges that the individual, families, and support providers were left and expected to manage. Several tables connected the issue of transitions back to the lack of structures for planning and the lack of choice (options) in whatever solutions were presented to an individual and their kinship network.
On this last thread, many tables had a larger discussion about the assumed incompetence or lack of capacity of individuals to help direct their own lives, putting them in a position where decisions were too often and consistently being made about them, without them.
At the same time, others noted the gap in education about disabilities, a lack of first-person story-telling that could inform and educate, and a lack of awareness and exposure to different ways of doing supports and housing.
While these threads interwove in different ways at each table. There was a remarkable continuity at all the tables on the challenges. There was a consistent identification and apparent agreement that, no matter what the theme, gaps were marginalizing the role of the individual in decision making around their life, and that the landscape was too often operating under the presumption that this sort of systemic disenfranchisement was either necessary or inevitable because of structural conditions in the system.
On the question of opportunities, there were some inspiring observations and discussions. Some tables focused on Knowledge, noting that there are opportunities to build knowledge by better organizing it through the creation of resources centres, information or “cheat sheets”, increased capacity and training on person-directed planning, inclusive employment (including education of employers), and a broader framing of disabilities that focused on abilities and communities ability to benefit from those. This dovetailed with the equally prominent theme of Attitudes, which some framed as a need and opportunity to shift the attitudes of those who work with and support persons with disabilities to recognize frustration, meet individuals where they are, and recognize the capacity in all to self-determine. Others noted that attitudes of stakeholders such as service providers and community-based organizations had the opportunity and needed to shift to a more collaborative approach.
Others noted opportunities in the formation of meaningful relationships around individuals, forming the core of meaningful community membership. Some focused on opportunities around Advocacy and Self Advocacy, seeing chances to create innovative structures for helping individuals advocate, and build community support for their advocacy by putting persons with disabilities into a position where they can help others navigating these systems, broadening their networks and building a more meaningful participation in their communities. Finally, choice was also a pronounced theme of opportunity, with many noting that recent innovations around FLEX were moving closer to a more appropriate individualized funding structure. So while Funding was a significant thread running from the gaps conversations of many tables, others focused on the importance of also creating structures that allowed for innovative co-housing arrangments, and the ability to choose one’s roommates.
In the last 15 minutes, tables were asked to combine their findings and settle on 3 “wow” factor for you? Negative or Positive. The groups decided the Top 3 that stood out. When clustered into themes, we saw the following emerge:
Person-Directed decision making and planning and the need and importance for acknowledging and cultivating the autonomy of individuals to build independence, however possible.
Connectivity to the community, through relationships, and a clear commitment to helping individuals stay connected to their community through access to transportation, and access to support in navigating the community and systems that are meant to support them. Some were inspired by the idea of navigation hubs, while others were clear that the conversation and the larger event highlighted the need for more and clearer communication between the many players and individuals that make up the supported housing community.
Inclusion means listening to individuals and their wants and needs, creating the conditions for dignity, accommodating and building their capacity to participate in the activities of daily living, focusing on their quality of life, building more accepting communities and breaking down the structures that push people with individuals out of those communities and segregate them in their houses.
Funding, was a wow for several tables. For some that meant more access to resources and supports, while for others that meant more access to affordable housing at large.
Education that builds communities’ knowledge about the abilities of individuals and their capacity to contribute with supports and builds the foundation of information that allows for informed choices and advocacy among individuals, families, and other supports in a person's network.
After a brief lunch, participants returned to their tables and were asked to build on the earlier discussion on how someone might want to live in community, and shifting their focus to what is available and what the person would need to “get” to reach their goal and what they can “give” their community. How might we assist people to plan and live in their own homes? What is currently available and how we can creatively use what is available?
This portion was composed to help participants uncover, at their tables, the current way of providing services and support while nudging them to explore the options they and others had explored and heard on report backs.
To frame this conversation, participants were asked to answer what a transition would look like, for the hypothetical person they had earlier thought about, from multiple perspectives: taking the person’s, family and kin’s, service providers’, and funders’ perspectives. Recording guides were provided to capture this harvest. Snapshots of each of those harvests are provided here.
This data, along with the note taker data will be themed and expanded on as feedback for the consultation process for the White Paper.
However, for the purposes of this report, in the final 15 minutes of this discussion participants were asked to come to as much agreement as possible around three “big ideas” that emerged from their tables. We have arranged them into the following broad themes:
· Building Political Will
· Making Person Directed Planning a foundation of Supported Housing and Living
· Building and Sharing Resources Better
· Giving access to better support Practices and Capacity Building in Areas of Support
· Improvements in Navigation Supports, Coordination and Communication around Housing
· Taking a more Proactive Approach to Managing and Supporting Transitions
· Building Community Readiness and Awareness for Inclusivity and Acceptance
· Increasing Collaboration and Building a Supported Housing Community
After the final break for the day, participants were asked to build on Round 1 and Round 2, and think about what the person needs to get to live a good life, what the person can give to his or her community, Participants were asked to come up with action items for after this event. To get at actions they were asked to:
Think of new ways of working together for collective impact?
· From your point of view of “imagining better” and what you heard today, what is important to capture moving forward?
· What do we need to do more of and what needs to be in place to do it?
· What are the areas of focus and ideas for action that we can grow?
· What do you need to keep participating in this process in imagining better?
The most prominent theme to emerge out of this action-focused conversation was around the need for ongoing collaboration. Building Trust and Relationships, with key people from across stakeholders, including individuals, families, service providers, government, and the community sector, was a repeated theme. This dovetailed with many group’s requests for an ongoing community of practice or collective impact structure, or even knowledge sharing sessions (similar to the event) that could increased connectivity.
Importantly, the second-most often repeated theme at many tables was that any collaborative work or framework needed to be person-centered and influenced. This theme connected, at many of the tables, to the theme of More Education and Training. Many of the participants pointed to a broad need for more education on housing issues, and person-centered and supported decision making, and for those in the system who work with persons with disabilities. But beyond basic education, several tables identified the need for more and increased access to training for staff, navigators, community-based people and organizations, and families.
At the same time, many tables directed their attention to the need for Social and Political Advocacy, particularly with provincial and federal politicians, and believed work could and should be done to help individuals and stakeholders become educated so they can engage the media and others more constructively. This connected to another prominent theme, in Communication, which many noted was inconsistent and lacking between stakeholders. Some called for websites or other online tools, while others demanded clearer and more transparent communications (and access) around information about housing, databases with housing processes and waitlists.
This connected, for several tables, to the need for a strategic approach to System Change; from a system that is reactive to one that is proactive. A system that is a mix of bottom-up and top-down, increases engagement of support networks, particularly families, one that focuses on supported living rather than just “supported housing” and a move away from thinking of supports and housing through custodial care lens towards a person-centered one. Two tables also mentioned that work needed to be done on creating a system that reflects on what is and is not working. However, to reflect on this, many groups gave attention to the need for clearer standards in reporting and accountability.
Another prominent theme for actions to take was Innovations in Supports, which ranged from the creation of navigators, increased supports for transitions between ages and stages of supported living while moving from facility-based to individual-based thinking and arrangements of resources and supports, and ways to plan for the incorporation of organic supports with the more formal supports that often come with living in a supported living arrangement. Of course, many of the discussions about innovations in supports also pointed out the need for action around access to resources. This included increased funding, better sharing of resources, and ways to clearly identify and navigate people to services or groups working to develop new models and services.
To close the day, Cynthia Carroll spoke to many of the themes that happened through the day and thanked the participants for taking the time and listening to one another with appreciation and vulnerability that allows for often difficult ideas and challenges to be unpacked and explored in a productive way.
She thanked the other community partners, Community Homes Action Group, Nova Scotia Association for Community Living, Nova Scotia League for Equal Opportunities (NSLEO), Independent Living Nova Scotia, Brenton Ability Centre, Mo Drescher the graphic facilitator from Brave Space, Horizons Consulting, and the facilitators/researchers including Paula Hutchinson and Brian Foster for their work in preparing and stewarding the event.
This extremely productive daylong event has given us incredible feedback that is already proving integral in directing the drafting of the White Paper that will released by the end of June. From here the White Paper will, we hope, help spur further dialog among those who attended, and hopefully elicit some feedback.
We have posted 3 submission welcomes the individual’s stories, that will be used for White Paper feedback and findings.
1) Living a Good Life: Which solicits first-person stories of what ingredients go into living a good life and what makes a good home
2) Promising and Innovative Practices: This is a form through which any individual, family member, service provider, government representative, community member, developer, politician or anyone, can open up about promising or innovative practices in supported housing or living that they think should be incorporated into the final work of this consultation and community building process.
3) White Paper Feedback: This form will be released at the same time as the White Paper Draft is made public and will give individuals open-ended capacity to offer their thoughts and constructive feedback on what it examines and the recommendations it makes.
We will also be releasing a series of related tools, interviews, findings and position papers, including:
1. A Resource guide that will connect individuals and families to important resources for exploring supported housing and supported living arrangements or models (end of June)
2. A Crisis Stabilization and housing report that will be released on June 3rd.
3. Interviews with service providers from across the world, who have been identified as innovators in the field of supported housing or living, to highlight some emerging practices and trends we can look to;
4. A list and link to videos and resources that people working on and in supported housing can use to learn and become more informed (ongoing).
All of these submission portals will be accessible for any interested contributors on the Supportedhousing.ca website.
In addition to formally releasing the Supported Housing White Paper, AutismNS and its partners will be welcoming speakers from across the region and world to speak to promising practices that will resonate with some of the emergent recommendations and desires for wider knowledge or learning among those who live and work in the supported housing community.
We also hope that this event and the broader process will be the start of new communities of practice, experience, and action. We are actively exploring opportunities to help in the facilitation of these groups. If you are looking to connect with other individuals you met at the Summit, please contact the organizers.
Check this website regularly and join our mailing list to be updated on all of the developments around this important work. We look forward to working and learning with you all in this important journey to build more and better supported housing options in our communities.
We are seeking participants on the Autism Spectrum who live in Nova Scotia and are at least 16 years old for a survey about your desires, needs, experiences, and hopes about housing.
After completing the survey, you can enter in a draw for 1 of 5 $100 Sobeys gift cards!