For the purpose of the present study, collaboration in decision-making or shared decision-making (Lewin, 2012; Lewin et al., 2017) is defined as “profound conceptual collaboration – practical and sustainable – of the persons at the center with their entire support system” (Collaboration Beyond Disabilities Forum, 2018, p. 2). This approach legitimizes the experiential knowledge of people with disabilities and their family members, together with the knowledge of professionals taking part in the process. Shared decision-making enables clients to make decisions that are better tailored to their needs and characteristics, thereby contributing to optimal and efficient take up of programs and services.
Shared decision-making may occur in four spheres of influence that include the entire scope of individuals affected by the process: (1) The individual sphere refers to decisions regarding the personal life of individuals with disability and their families; (2) The service setting sphere refers to decisions regarding all users of a given service; (3) The municipal sphere refers to decisions regarding all persons with disabilities in a given local authority; and (4) The national sphere refers to decisions regarding all persons with disabilities in the entire country.
In 2017, the Disabilities Administration at the Ministry of Labor, Welfare and Social Services (hereafter, Disabilities Administration) joined together with parents and other partners to establish the Collaboration Beyond Disabilities Forum (hereafter, Forum). The Forum’s purpose is to promote the collaboration of persons with disabilities and their family members in decision-making processes in all spheres detailed above – the individual, service, municipal and national spheres. As a basis for its continued activity, in 2018 the Forum published a Strategic Collaboration Convention for the Promotion and Integration of People with Disabilities in Society. Subsequently, the Forum initiated a campaign of online public collaboration and organized a conference attended by more than 120 people – public representatives, members of the affected population and professionals.
Following this stage, the process began of developing practices for implementing the shared decision-making of people with disabilities and their families. At this point, the Disabilities Administration contacted JDC-Israel-Ashalim and JDC-Israel Unlimited to propose a pilot for implementing the initiative’s working principles. First, a steering committee was formed, based partly on members of the Forum, mainly parent representatives, people with disabilities who were experienced in shared decision-making and willing to act to promote it, as well as professionals, including representatives of the central and local government, NGOs, and service providers.
The initial step was to study existing models of shared decision-making in Israel and worldwide, specifically best practices and implementation standards, to assess the suitability of these models in the Israeli context. Accordingly, representatives of JDC-Israel-Ashalim and JDC-Israel Unlimited contacted the Quality in Social Services Research Group of the Myers-JDC-Brookdale Institute and requested that a study be conducted on optimal shared decision-making models and practices. The study was conducted from June 2020 to March 2021, closely supported by the steering committee that participated in important decision-making processes and in discussing dilemmas arising in the course of the research, in a model similar to participatory research processes.
The study’s overarching goal was to lay the groundwork for a discourse on shared decision-making models for the purpose of the pilot planned to begin in selected locations in Israel.
The study’s specific objectives were:
- To refine needs and challenges involved in processes of shared decision-making by people with disabilities and their families.
- To learn about Israeli and international models of collaboration between professionals and policymakers and people with disabilities and their families in making decisions regarding the latter’s lives.
- To identify best practices for collaboration in decision making.
As indicated above, a participatory approach was manifested not only in the contents of the study but also in its conduct. The study bore the hallmarks of a participatory action research: the Forum members were active participants in the study, from its planning through information gathering to formulating the conclusions and organizing a workday (as described below). Members of the Forum took part in formulating the research proposal, selecting relevant references from the literature, and selecting the interviewees; some of them were interviewed themselves. Finally, Forum members provided feedback on the research findings.
3.1 Research Population
A total of 41 people participated: thirteen people with disabilities; eight parents of children or adults with disabilities; nine third-sector representatives; eight service providers; and three staff representatives from the Ministry of Welfare.
(1) International review of models and best practices of shared decision making, based on the professional literature, evaluation studies, policy papers and practice-based documents by various organizations in Israel and worldwide.
(2) Semi-structured in-depth interviews. Fifteen interviews were held: one with a person with disabilities; four with parents of children and adults with disabilities; three with municipal representatives; three with Ministry of Welfare representatives; three with third-sector representatives; and one with a JDC-Israel representative.
(3) Four focus groups: Two groups with people with a variety of disabilities who have experienced sharing processes; one mixed group of people with physical and sensory disabilities and parents of children and adults with disabilities; and one with third-sector representatives.
(4) Workday: Towards the completion of the study, on March 3, 2021, we held a workday with about 70 participants, including members of the Forum and additional partners – professionals, researchers, policymakers, people with disabilities and their family members. The workday’s purpose was to formulate best practices for the future pilot. During the day, the research team facilitated discussion groups on case studies and analyzed the knowledge and attitudes arising from the discussions.
4. Main Findings
4.1 Needs in Shared Decision Making Processes with People with Disabilities and Their Families
The in-depth interviews and focus groups suggested a strong need for shared decision-making in the different spheres of influence where decisions are made (individual, service setting, municipality, and country), in various milestones in the individual’s life and among population groups remote from the centers of power. Note that the sample is not representative, so that the findings cannot be generalized to the entire population, nor can significant differences be indicated in each of the four spheres with regard to the presence or absence of shared decision-making.
(1) Spheres of influence. Despite emerging initiatives promoting the collaboration of people with disabilities, parents and professionals in decision making, the findings suggest a strong need for shared decision-making in each of the four spheres of influence.
(2) Milestones. Several junctures in the lives of people with disabilities were identified, where collaboration is decisive and its absence is keenly felt, particularly in transitional stages such as when formulating an individual therapeutic plan, diagnostic processes, the graduation from the education system, leaving home for independent living, searching for a job, and entering an intimate relationship.
(3) Population groups. It appears that the more remote the group from the centers of power – geographically, economically, politically, or culturally, the weaker its ability to influence decision making in the various spheres of influence.
4.2 Shared Decision-Making Models
A shared decision-making model is a collaborative process that has taken place in the past or that takes place in the present, which includes clearly defined target populations and objectives, and uses specific collaboration methods and tools. There is a large variety of models for shared decision-making, which may be classified according to the four spheres of influence. The models suitable for a certain sphere share multiple characteristics and elements, but also have unique aspects.
In this study, we focused on models for the collaboration of people with disabilities and their families in decision making in the two spheres of influence selected for the pilot – the individual and service setting spheres. The study examined in depth two models for each of the two spheres of influence selected by the leading team and the steering committee, as well as an additional model that was not specific to a certain sphere but was implemented in all four.
Models for the Individual Sphere of Influence
(1) Local area coordination (LAC) is a dedicated model for people with disabilities and their families. It is unique in appointing a case manager who provides personal and long-term support for persons with disabilities and their families, formulates an individual treatment plan with them, locates relevant services in the local community and connects them to these services, and at the same time monitors changes in the person’s condition. The case manager is responsible for providing individual and ongoing support for several dozens of individuals and families in a given geographic area and for connecting them to the local community (Government of Western Australia, 2016; Nesta, 2012).
(2) Family group conference is a model adopted in Israel and worldwide found to be particularly effective with people with disabilities (Frost et al., 2020; Shemer et al., 2020). This is a family discussion group facilitated and moderated by a dedicated professional specifically trained for this role. The facilitator plans, prepares, leads, and eventually moderates a structured discussion between the person with disability, members of the nuclear and extended family and relevant professionals from various service areas. Following a structured and collaborative process, all partners formulate an individual treatment plan together, and commit to its implementation. The facilitator is responsible for ongoing monitoring of the implementation and for supporting the family in the process.
Models for the Service Setting Sphere of Influence
(1) Leadership or self-advocacy group. This model is widely used in Israel and worldwide with many different population groups, including people with disabilities and their families. These groups are comprised of both professional staff members and clients and are designed to formulate policies and rules of conduct in the setting. The group has at least one facilitator, and its members convene regularly, usually over a long period, but sometimes also for a short period determined in advance. The model promotes shared decision making through discussions, joint decision-making and disseminating decisions to all service users, team members, and service management. Moreover, the model indirectly promotes shared decision-making processes “on the ground” by teaching the group participants how to advocate for themselves in various areas of life, both within and beyond the group (Kreim et al., 2018).
(2) Including client representatives in boards or councils. Like leadership groups, this model has also been widely applied among various population groups, including people with disabilities and their families. In this model, representatives of the clients and their families take part in service boards and councils on the various levels, allowing them to influence the decision making directly (Makhani-Belkin et al., 2019; Omeni et al., 2014).
Using Experts by Experience as a Universal Model
This approach refers to a variety of models applicable in the various spheres of influence. What makes them unique is the inclusion of representatives with experiential knowledge – persons with disabilities and their families – as professional team members, or leadership/self-advocacy group facilitators (in the service setting sphere), or as therapists in psychiatric hospitals (in the individual sphere). In Israel, this approach is practiced widely, in all spheres of influence. Two of the best-known and years-long programs based on this approach are “Service Providing Consumers” (Hebrew) and “Peer Recovery Support Specialists in Psychiatric Hospitals” (Hebrew) – both intended for people with mental disabilities and their families.
4.3 Best Practices
A best practice is a recommended and effective modus operandi for promoting predesignated objectives. Best practice in the shared decision-making area answers the question, how to best enable shared decision-making. For each of the participation stages detailed below – preparation, process, and implementation – there are unique best practices, with other practices applicable to all.
Best Practices in the Preparation Stage
- Recruit diverse and relevant participants. The participants recruited for the process need to represent the diversity of the people influenced by the decisions made. Nevertheless, make sure that the number of participants enables a productive and efficient process.
- Prepare all participants by providing professional training and winning their hearts. The training sessions will revolve around transforming the power relations, legitimizing the various types of knowledge, ways of creating a better climate and ensuring equal relations, bridging gaps, etc. The workday participants noted that this practice was particularly important.
- Set procedures for structuring and regulating the collaboration. Administrative anchors should be created in the organization where the collaboration is designated, including written procedures mandating collaborative processes. The workday participants highlighted this practice as well as important.
- Allocate funds, time and human resources in advance and with complete transparency with regard to available as opposed to lacking resources – this is essential given the resource-intensive nature of the collaborative process.
- Determine the service setting’s readiness for collaborative processes, in terms of prior experience, knowledge and skills, preparedness to allocate resources, etc.
Best Practices in the Process Stage
- Start with the consensus. Begin from a discussion on agreed-upon issues to enable progress and prevent the process from stalling. Manage disagreements with a dignifying approach.
- Put yourself in the other’s “shoe”. To optimize the dialogue in the collaborative process, one must adopt the concept and technique of understanding other people’s frame of mind by various ways, including simply asking questions.
- It is essential to reach conclusions on the various issues to prevent frustration and achieve real progress, while providing clear reasons for the decisions made.
Best Practices in the Implementation Stage
- Follow up on implementation. The process of implementing the decisions made in the collaborative process must be continually monitored.
- Inform all partners on the decisions made. The decisions must be mediated to both the participants and those who have not participated in the process but are influenced from the decisions made.
- Measure and evaluate the process and its results. The process goals must be determined early on, so that the degree to which they have been achieved could be assessed later on for the process of lesson learning and improvement.
- Disseminate the decisions among relevant decision makers. For example, present the decisions in committees dealing with relevant issues (such as parliamentary or municipal communities) in order to expand the spheres of influence as required.
Best Practices throughout the Process
- Make the process completely accessible in cognitive, physical, sensory, communicatory, and cultural terms.
- Listen and talk at eye level. Egalitarian dialogue among the various partners, grounded in the equalization of the two types of knowledge – professional and experiential – is essential. Communication among all partners should be based on mutual listening and respect.
- Full and mutual transparency must be maintained, including in defining the process goals, aligning expectations, and selecting the core collaboration areas.
The study did not include systematic mapping and characterization of all shared decision-making processes as applied worldwide and in Israel specifically. Therefore, the cases we chose to delve into did not necessarily represent the existing variety. The criteria for case selection were ongoing (as opposed to one-time) processes of people with disabilities and their family members participating at the highest level of shared decision making in the welfare area, in individual, service and municipal spheres of influence.
6. Summary and Future Directions
The study is based on the understanding that shared decision-making is a systematic methodology designed to meet the partners’ needs. It is applied using various models and must be implemented based on best practices.
The findings suggest that despite the formal recognition of the right of persons with disabilities to make their own decisions regarding their own lives, and despite emerging initiatives to promote shared decision making among persons with disabilities, parents and professionals, this right is still far from being fully implemented, and is not yet manifested in significant in decision making. The absence of collaboration is felt in each of the four spheres of influence – individual, service setting, municipal, and country. It is therefore particularly important to initiate and promote programs for shared decision-making. To do so, this study has examined relevant models classified according to the spheres of influence and proposed best practices for promoting shared decision-making. Each of the collaboration stages – preparation, process, and implementation – has unique best practices, and others are relevant to all three stages.
- Constructing the model. According to decisions made regarding the nature of the pilot, its goals and budget, we recommend adopting elements from the various models that are suitable for the relevant sphere of influence, and tailor the model most appropriate for the shared decision-making in question accordingly.
- Using best practices. Regardless of the model selected, it is important to address the best practices and apply them in the process. The workday participants highlighted the importance of two practices:
- Preparatory workshops including winning the hearts and providing professional training for all participants. Among the subjects for discussion at the workshop, it is essential to address potential contributions and benefits as well as challenges and barriers; align expectations regarding needs, forces and interests of each of the groups involved; and best methods of implementing the collaborative process, including full accessibility and collaboration-promoting communication. In addition, the preparation stage should include determining the purpose of collaboration, its timing, the relevant municipality and service setting, as well as spheres of influence.
- Structuring and standardizing the process using clear procedures as part of the organization’s routine processes, setting goals and building a logical model, determining the authorities as well as commitments of all partners, as well as holding regular and structured meetings.
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Frost, N., Abram, F., & Burgess, H. (2014). Family group conferences: Context, process and ways forward. Child & Family Social Work, 19(4), 480-490.
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