Advocacy

By Michael Smull, Bob Sattler, and Tanya Richmond Partners at Support Development Associates and NCAPPS Faculty Without advocacy, change does not happen. Change occurs when the pressure for change exceeds the resistance, and one source of the pressure is advocacy. Effective advocacy occurs when the right people with the right information reach the right audience. Advocacy can also seek to stop and prevent change. The pressure from the advocacy for change must exceed the pressure focused on stopping change. It is helpful to separate advocates into two types: external advocates and internal advocates. External advocates are those who do not work for the system and because they don't, they don't have the restrictions that internal advocates have on what they can say and advocate for. Internal advocates work within the system. As employees, they have the knowledge and opportunities, but also the restrictions inherent in being employees. Three types of external advocates · Individual · Issue · System External Advocates It is further helpful to divide external advocates into three groups: individual advocates; issue advocates; and system advocates. To have a person-centered system, the more skills the external advocates have, the more effective their advocacy will be. · Individual advocates work with a person or a small group of people. They are often family members or peer advocates (peer advocates include those who are self-advocates). Their best efforts are focused on helping someone, or themselves, get the support needed to move toward a desired life in their community. In doing this, they learn what is working and not working in getting supports for whom they are advocating. They learn about effectiveness and efficiency within the parts of the system they interact with. Regular listening sessions that engage individual advocates will yield critical feedback regarding the impact of efforts to make positive change. Training in person-centered thinking skills increases the impact of the advocacy. Knowledge of system issues increases the value of the feedback. · Issue advocates focus on one or more parts of the system. For example, they may be looking to increase pay for direct support professionals or reduce a waiting list. They are often responsible for increasing the system’s resources. These advocates are more effective if their advocacy is seen in context. The core context is the vision for the system and the nine elements that are required to have it be functional. Training in person-centered thinking skills is helpful; training in the nine elements is essential. · System advocates focus on reform or transformation of the system. Good system advocates must know how the system works, and they need to know the tradeoffs inherent in changing pieces of the system. System advocates not only need training in person-centered thinking and the nine elements, but they also need regular conversations with internal advocates. Internal Advocates two types of internal advocates · Person centered vision · System transformation Systems need internal advocates as much as external advocates. There must be people within systems who understand how the system works and what needs to change to move towards the vision they developed. They need to not only understand the individual elements, but also how they work together and the importance of alignment. There are two broad groups of internal advocates. The first are those advocates who use person-centered thinking skills to move toward the vision. The second are those who are system transformation advocates. The first group is focused on moving toward the vision through using person-centered thinking skills by using and role modeling the skills within their organization for others to see and adopt. The second group is focused on moving towards the vision considering all nine elements and have them embedded into the organizational/system structure (there need not be two separate groups - you can have advocates who advocate for both.) Internal advocates also need to focus on effectiveness and efficiency within system practices. Some of this comes from the application of person-centered thinking skills. Some of it comes from knowing other quality improvement skills, such as process mapping with swim lanes.[1] Significant changes in system practices often result in unintended consequences as well as those anticipated. The advocates who can better anticipate unintended consequences can help avoid the negative impacts. The internal advocates need to look for and make the changes that can be made without permission. And they need to identify those changes that need permission and advocate for them. Internal advocates conduct listening sessions with external advocates to collect and organize the critical information they have knowledge of and use to formulate plans for action. Regular listening sessions need to be scheduled so the information can be organized in a working/not working format and presented to leaders. The listening sessions may be accomplished in a variety of ways, such as surveys, Town Hall meetings, meetings with departments, etc. It is critical that everyone has the opportunity to share their thoughts to feel a part of the change. The information from individual advocates will come, in part, in the form of stories and may be from either external or internal advocates. These stories need to be reviewed, and the best instructional stories need to be highlighted. Stories will help “connect the dots” for those listening or reading them and will illustrate the impact of the changes being made. Lead change with stories. Manage change with data. To convince others, internal advocates need a mix of stories and other data on system performance and outcomes. Stories need to demonstrate the power and benefit of the efforts. Stories are a type of qualitative data whose power lies in their ability to demonstrate the return on the investment of effort. Those who are developing the illustrative stories need to keep in mind that the most powerful and useful stories typically appeal to one of three areas: · Intellect · Emotion · Financial impact A single story carefully crafted can appeal to all three areas, but advocates need to keep in mind that different people with whom they’re advocating will best be convinced by the focus that resonates for them. Looking at data begins with asking: 1. Are we measuring the right things? 2. Are we measuring what matters to the person? 3. Are we measuring those things that indicate we’re moving toward our vision? 4. Do the outcomes for people reflect what’s important to them? It is helpful to operate from this view: Lead change with stories; manage change with data. The two need to work in unison. The system is better served when advocacy is developed and supported. Among external advocate, systems advocates are rare. However, individual and issue advocates can be supported to become system advocates.[2] There will always be tension and disagreements, but with transparency and mutual respect, internal and external advocates can be allies. Internal advocates are found where there are people with gifts, passion, and knowledge and are often viewed as “the naturals”. They have always demonstrated person-centered practices. Leaders need to identify those individuals at all levels of the organization and provide them with the skills and knowledge needed for good advocacy. Advocates then need to be listened to and their learning acted on. Good advocacy creates strong pressure for change - positive pressure. Without advocacy that is nurtured and supported, positive change is unlikely to occur. Where possible, external advocates need to be allies with the internal advocates in moving toward a person-centered system. This requires those from the system to not only offer opportunities for listening but also to act on what they learn. As allies, there is a kind of partnership. Partnership requires trust. Trust stands on a foundation of transparency and respect. Promises made must be promises kept, and roles need to be clear. There needs to be recognition that advocacy results in tension. That tension needs to be seen as the inevitable outcome where external advocates seek more than can be granted at that moment. Tension doesn’t need to be conflict. Partnership can exist where roles are clear.


NCAPPS is funded and led by the Administration for Community Living and the Centers for Medicare & Medicaid Services and is administered by HSRI.


[1] https://www.lucidchart.com/pages/tutorial/swimlane-diagram [2] A good example is Partners in Policy Making: https://en.wikipedia.org/wiki/Partners_in_Policymaking

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