Beginning in 2014, a group of agencies in our sector that were philosophically aligned organized what, in 2016, would become an annual conference that was based on a simple principle. Individuals with intellectual disabilities deserve, as we all do, the right to the lived experience of full citizenship in all areas of life including, housing, employment and recreation in regular settings alongside other diverse citizens.
Interest in the powerful theme of the lived experience of full citizenship drew close to 300 participants annually to our 5 conferences. During these learning exchanges, agencies, individuals with disabilities, family members, and community leaders highlighted their stories, their research, and their reflections with respect to breaking down walls and building bridges to facilitate full citizenship of supported individuals across their communities. Interest in these stories as well as insights and resources shared by various speakers underscored the importance of reimagining the role of agencies, their relationships with community service providers and with employers and deepening the role of staff and the ways they engage individuals receiving support.
The hope for these events was not only to inspire hopeful thoughts, but to compel real and meaningful change with an outcome of more people with intellectual disabilities enjoying homes of their own, jobs, friendships, and valued roles in all aspects of community. From the feedback we have collected and the relationships that were built with attendees, many of whom requested and received direct support from the From Presence To Citizenship team, we know that results were delivered. It is noteworthy that during the past six years more than 90 agencies have reached out to the organizers of the From Presence To Citizenship conferences for the purposes of knowledge transfer and knowledge exchange as well as guidance in moving their agencies toward becoming increasingly citizenship focused. Agency outcomes ranged from changes in the lives of one individual through to changes in organizational cultures.
It is increasingly evident that, even during these challenging times, agencies in the Developmental Services sector have an interest in reforming their structures, their cultures and their relationships across our communities.
It has become evident that the work of From Presence To Citizenship has further attracted the interest of MCCSS. For example, two of the founding members of From Presence To Citizenship have been invited to sit on Minister Todd Smith’s Minister’s Table and three founding members have been invited to participate on ADM Rupert Gordon’s Developmental Services Reform Reference Group. Through both of these advisory groups Jim Turner (Community Living Atikokan), Marg McLean (Community Living St. Mary’s and Area) and Debbie Everley (Kenora Association for Community Living) will advocate for the principles of From Presence To Citizenship.
Recognizing an evolving mindset, the organizing Executive Directors of From Presence To Citizenship have determined a need to formalize an association*. We recognize a void in the types of support and advocacy within the sector and are interested in complimenting the work undertaken by our other provincial associations. We would welcome your interest, your participation, and your support.
Beyond the recognition of the rights of people with intellectual disabilities, FPTC is both an ally and a champion for the full enjoyment of those rights in all aspects of community life, including housing, employment, and recreation, in regular settings and venues alongside other diverse citizens.
As an association*, From Presence To Citizenship will:
• Provide resource rich support and guidance to agencies and other organizations interested in transforming the delivery of their services
• Help agencies better support their staff and build their leadership capacity for influencing internal and external change
• Engage in knowledge transfer and knowledge exchange through a community of practice within and beyond the sector
• Advise and influence government policy that provides individuals with intellectual disabilities access to full citizenship
• Support families of supported individuals, employers, community services, arts, culture, recreation, and other stakeholders interested in supporting the principles of From Presence To Citizenship
• Inspire individuals, families and agencies to create alternatives to congregate settings, both residentially and day supports.
At this time, the founding agencies of From Presence To Citizenship would like to invite you to attend an online introduction to our association*. Recognizing that no two agencies are the same in their composition, challenges, or their evolution, we would like to establish a community of support with you and your agency.
If as an ED/CEO, you’re interested in learning more about From Presence to Citizenship, please send an email along with your agency’s name to info@fptc.ca by December 18th. We will be hosting a Webinar in late January with details to follow.
From Presence to Citizenship Guiding Philosophy
The existential path from presence to citizenship is essential in the transformation of how people view themselves and how they are valued by others across society. This well-worn path is sometimes faint to those who may have traveled it in their own forms and with their own struggles. At its best, the universal struggle for acknowledgement, acceptance, equality and finally, full participation in the life of society can and should lead to the growth of those making the journey as well as the advancement of society through the paramount importance of diversity within our lives.
From Presence…
Presence is not the path’s starting point. It is preceded by being invisible to others or worse, by being acknowledged and then by being marginalized from society. It is in the institutions that once housed society’s most vulnerable that we find the beginnings of the path to citizenship. It is from these painful memories that the recognition of the uniqueness of each person was realized by caring souls who began to liberate individuals with intellectual challenges from their often tortured and misunderstood existences. The journey taken by forward thinking and dedicated advocates gave birth to community-based agencies which, in their own ways and with the best thinking of their times, created models of custodial care.
Although acknowledgement of others within a society denotes a level of presence, marginalization persists even as a result of our best intentions as Developmental Services agencies to replicate programs that exist within our broader communities. Ironically, the very structures that once broke down the walls of institutions can be at risk of perpetuating systemic barriers that make it challenging for supported individuals to exhibit authentic choice, independence and even experience the dignity of risk. Ironically, it is under the guise of safety and sometimes misguided paternalism that once progressive community-based agencies unintentionally thwart the realization of full participation among individuals supported by agencies.
Presence, however, cannot be underestimated along the journey toward citizenship. Presence creates an important toehold along the path in which there is acknowledgement if not recognized value in the diversity that those with intellectual challenges can offer society. Presence provides all of us with an opportunity to have a glimpse into the positive impact that individuals with intellectual challenges can have within society. Within the construct of presence, people we support can occupy space in communities without a genuine sense of belonging that resonates from an authentic and deserved voice and opportunities to make meaningful and valued contributions.
To Citizenship
The term citizenship is inextricably linked to exercised rights and responsibilities. It moves past presence and belonging to a trusted place within our society. On an individual level, it requires the removal of encumbrances that preclude fundamental decisions to be made around, for example, where an individual wants to live and with whom, the ability to self-determine how any individual receiving support spends their time as well as the assertion of meaning, purpose and expression. This may be as seemingly simple and important as having a key to your own home or being recognized for one’s uniqueness and by name within our communities.
Having autonomy and choice are inextricably linked. They require the following conditions:
•Choice is about having personal control in your life
• A citizen is autonomous and has an identity based on their gifts and unique abilities
• A citizen makes choices; we need to recognize that supported decision making is about individuals making their own choices; it is about having personal control through our own support networks
• A citizen is afforded the dignity of risk; we don’t always make the right decisions, but we have the autonomy to do so. It is through the experience of making choices for ourselves that we derive self-efficacy. Protecting people from all risk significantly limits our ability to live a full and self-directed life.
• For most of us, we have considerable practice making decisions with lesser risk before we were faced with situations in which where made decisions with significant risk. The idea that we practiced and maybe made decisions that had not great consequences was part of the learning to make the harder decisions and take greater risks later in life. It is through those learned real life experiences that we can make more and more complex decisions.
At a societal level, citizenship imbues responsibilities for all of its participants to meaningfully contribute and to voice opinions, to remain informed and to care for and support one another. It is the reciprocal relationship between rights and responsibilities that moves us away from presence to citizenship. Citizenship requires interdependence with one another in order to advance self and mutual interests. We rely on one another in order to grow and to solve problems. Each of us utilizes the supports of others to achieve our own dreams and aspirations. Accommodations and receiving just enough support are necessary for each of us and do not devalue the contributions we can make or our desire to self-actualize. In the final analysis, how we care for and support one another to reach our potential is among the best assessments of a society and for achieving citizenship.
The Role of the Agency
Agencies, within the paradigm of From Presence to Citizenship have a role that is far different from providing care or perceived safety through sheltered choices and congregate settings. Agencies and their staff are community builders – facilitating webs of connections that enable inclusion, the establishment of relationships and involvement in the life of communities. These agencies provide planning and support, where required, along with guidance and the celebration of individual successes. Moreover, our work as agencies involves passionately promoting inclusion and reinforcing success stories to support a growth mindset.
Recognizing the uniqueness of each person’s goals and aspirations requires that we plan with individuals, based on their interests, and that we eliminate congregate support and decision making. Decisions around what meals groups of people will eat for dinner through to congregate decisions about how people will spend their time or where they live, work, volunteer or consume leisure eliminates autonomy of choice. Day programs further erode space to create new and individualized opportunities, perpetuate a false sense of security and deny inclusion in the larger community. One of our colleagues commented succinctly, “if the community does it, we don’t.” Inclusion and not the replication of services is the goal.
Establishing an environment in which citizenship can be realized requires an understanding of the supremacy of the individual being supported and their rights to make decisions that are aligned with their interests, goals and aspirations. Our role, as agencies is not to give autonomy, it is to facilitate opportunities, to offer just enough support and to create community connections that enable choice to occur. More than being person-centred, a term that lacks clarity, From Presence to Citizenship endorses the concept of person-directed approaches.
From a person-directed approach:
• The focus is entirely on the person, never the system. It is all about how I as a unique individual want to live my life, how I am being supported to reach my goals, ensuring I have the right amount of support and no more and no less – just enough, listening to what I have to say, facilitate opportunities and experiences that enable me to make informed choices and recognize that I am not dependent on you and that I am empowered through my strengths and bolstered by your support
• Numerous mainstream and community resources are unearthed, considered, researched and used. These resources are the ones that would be tapped first and foremost
• System resources are considered after the person’s dreams, interests and gifts have been discovered and only in relationship to how those resources can be used to support people in achieving their dreams and contributing their gifts
• The process asks “How can we do this?” rather than finding reasons why we can’t
• The process and participation in the process depends more on our heart connections with the person than on our professional connections to the person
The role of the agency within the framework of From Presence to Citizenship is to nurture interests, to support people as they set and realize their own goals and as each person make their own choices. Our work as community builders reduces the prominence of the agency in favour of the aspirations of the individuals we support. As community builders, we build the capacity of staff to become leaders within our organizations and across our communities. Staff are ambassadors and advocates for inclusion who are charged with promoting new mindsets of what it means to be different, unique or to have a disability.
Staff create paths along the road to citizenship that remove barriers to opportunities, form relationships with other community leaders, with our neighbours, with prospective employers and explore volunteer opportunities. In short, staff mine opportunities to strengthen our social capital.
In the process of doing so, agencies and their staff provide living proof that dispels the Four Social Myths of Marginalized People. These myths are that marginalized people need to be…
• with others of “their own kind”
• looked after by experts
• safe from exploitation
• removed from society to keep others safe
Just Enough Support
The seven principles of Just Enough Support are not prescriptive. however, they are intended to provide guidance in community building and promoting inclusion. The seven principles are:
• Honouring personal autonomy
• Person-directed thinking
• Always building bridges
• Authentic valued roles
• Community-based solutions
• Asset-based solutions
• Barrier-busting technology
By way of an example, consider a person who would like to have a part in a local play. Would a play that is being produced by a special needs theatre in the community be an authentic valued role? Is it a community-first solution? Is it asset-based? Is it building bridges in the community? Is it honouring the autonomy of an individual or is it a means to compensate?
If the authentic local theatre comes back with access barriers rather than precluding inclusion based on perceived limitations, we can then explore different solutions and accommodations. Is there a technological solution? Could we build a bridge with a gatekeeper in the theatre group who could help us to envision new possibilities? It could be that the individual interested in having a role in the play has assets that have not been understood.
Our strength as a society and as agencies is derived through the inclusion of diversity in the life of our communities.
Congregate Living
These same principles of providing Just Enough Support and having autonomy of choice extend to fundamental decisions around where each of us lives and with whom. Congregate living environments are intense micro-settings that are not of choice, are not based around a familial dynamic and are too often organized around expediency and diagnoses. The fundamental need to have a home of one’s choice whether it be by yourself or with others is foundational to a life of self-determination.
Adding virtual strangers and employees to a home that lends itself to a congregate mindset is erosive to meaningful levels of autonomy and self-direction. Home is where our simple and our important decisions are made and where we most frequently exercise choice. When and what we eat, watch TV, visit with family and friends, become involved in meaningful relationships and, how people budget money cannot be denied as being essential to the human experience.
Michael Kendrick’s article, “Why Group Homes are no Longer Optimal” argues that congregate settings do not foster citizenship, they create segregation. When people are supported and experience the world/community like you and I, it is a known fact that their health improves dramatically. After all, autonomy contributes to health and well-being. Incidentally, the same argument can be made for day programs.
The Cost of Housing vs Quality of Life
There remains a persistent argument that providing individuals with authentic choice over where and with whom they live will cost more than providing congregate settings. There is significant data that demonstrates the opposite. People who have autonomy don’t require as many restraints, don’t lash out at staff or others and are not compelled to break things or damage their environment. People are happier when they have autonomy and choice.
Recently, Community Living Algoma, Community Living Brant, and Community Living Upper Ottawa Valley participated in an MCCSS study and provided information that supports the assertion that enhancing quality of life does not cost more (MCCSS, 2019-2019). Moreover, there are other agencies across the province that support these findings through their own experiences.
Our Guiding Principles
• Citizens make choices about small and large decisions in their lives. Autonomy over small decisions gives us experience and confidence in making larger decisions; it is about having personal control through our own support networks
• The focus of our work is entirely on the person, never the system. It is all about how I as a unique individual want to live my life, how I am being supported to reach my goals, ensuring I have the right amount of support and no more and no less – just enough, listening to what I have to say, facilitating opportunities and experiences that enable me to make informed choices and recognizing that I am not dependent on you and that I am empowered through my strengths and bolstered by your support
• A citizen is afforded the dignity of risk; we don’t always make the right decisions, but we have the autonomy to do so. It is through the experience of making choices for ourselves that we derive self-efficacy. Protecting people from all risk significantly limits our ability to live a full and self-directed life
• System resources are considered after the person’s dreams, interests and gifts have been discovered and only in relationship to how those resources can be used to support people in achieving their dreams and contributing their gifts
• The process asks “How can we do this?” rather than finding reasons why we can’t
• The process and participation in the process depends more on our heart connections with the person than on our professional connections to the person
• Congregate settings, programs and decisions deny choice and decision making. Group homes, day programs and environments of forced choice that are organized around diagnoses, expediency or other constructs that belie authentic choice afforded to citizens
From Presence To Citizenship - De la présence à la citoyenneté 