The history of our social services and medical models are rooted in institution care. These models gave power and control to the professionals. Many communities have been actively harmed by system processes in the past. This includes people with disabilities and mental illnesses, veterans, people from the LGBTQIA communities, and people of color. These systems and others such as our education or justice systems have strong biases that prevent them from serving people equitably today. As a result, many people and communities are mistrustful of these systems and the professionals within them. These issues of equity, access, and power differentials have been acknowledged as problematic since the mid-20th century. It’s not uncommon for systems to have pulled together groups of citizens to seek their insight. Unfortunately, many of these situations have gone awry. Sometimes they have depleted rather than build trust.

Some common missteps in these processes include:

• Not setting aside sufficient resources to support authentic engagement or follow-through.
• Not using the information that is gathered or following recommendations given.
• Never reporting back on what came of efforts to communities and individuals.
• Not working to create processes that supports equitable engagement and shared power.
• Using processes that work for professionals (timing, location, etc.) rather than community members.
• Keeping real leadership and decision-making in the hands of professionals and already well-represented communities.
• Asking the same people from under resourced communities to participate in every initiative.

When people are asked to participate but have no real voice and power it is called tokenism. Many people from under-represented or excluded communities will be cautious about being asked to participate without understanding power structures and intentions.

One key aspect of person and family-centered practices is a shift in this power-differential in services. People living with these conditions must lead the way in defining and evaluating success. They are central voices to co-creating this new vision. However, people being served in the mental health system experience many barriers to being heard and understood in this process. Often, they are simply not at the table when decisions are made. When invited, they are not necessarily supported effectively. Some examples of things that are not thought about are transportation or fair compensation. Accessibility of processes may not be thought about. For example, people may process information and communicate in ways that are not typical or that represent different cultural and linguistic backgrounds. As a result, they not be able to participate if processes that are organized in ways that work for professionals.

Today’s mental health treatment still includes the possibility of forced treatment and physical or chemical restraint. Regardless of why they are used, they are traumatizing to individuals who experience them and impossible to forget. They imply that the person is incompetent and must be managed by others (professionals or family). The person may also have other traumas due to their heritage or life experiences. This can create fear and hold them back from speaking up directly. They may be reluctant to openly contradict those in power even when invited to participate. Co-creation without acknowledgement of these traumas is unlikely to work. Processes to support equitable contribution and feelings of safety and control in these processes must be considered. It’s important to understand that some people may need more support to organize and express their hopes than someone with less trauma.

Families have similar historical and current traumas in the mental health system to the people who have these illnesses. They have been left out of most standard treatment approaches. They have experienced blame and are often suspected to be part of the reason people they love experience mental health conditions. It’s not uncommon for confidentiality laws to be used in a way that minimizes or controls family involvement. Even when the person is very open to family involvement, practitioners may not consider the value of these relationships or the needs of these family supporters. Parents of children with mental illnesses are sometimes referred to child protection instead of receiving effective evaluation and treatment for their child’s and family’s needs. Families often report feeling unsupported and shunned by others. These issues are increased when other forms of social inequity intersect (such as racial or economic inequities). As a result, family members may carry anger or fear when interacting with representatives of the mental health system. They may have little trust in professionals or the system.

The people who are the most poorly served in current systems, are going to be the most challenged to share their vision for person and family-centered practices. They may deeply mistrust the systems and see no point in sharing their views. They may be struggling with experiences of personal trauma. They may also come from populations with generational trauma. Individuals from communities that experience systemic inequities and historic and daily traumas are some of the most important voices to influence positive changes. However, they may have the least desire and fewest resources to engage in this work. Careful thought and significant effort and resources may be needed to engage them. Many organizations support people with these challenges. However, the power differential can make it difficult to gather information that is meaningful directly from people. They will need time to assess if processes are really respectful and open to their true experiences. They often will not open up and actively engage unless trust and rapport are built. They are unlikely to stay engaged if their views are not really heard or if changes are not meaningful or move slowly.

Community work takes time. It requires showing up and listening. It requires educating and sharing without imposing. It requires learning about various communities and what has worked and what must change. It requires finding champions and leaders in the community who see value in this work. Problems connected to ongoing stigma, prejudice, and lack of services may make it hard to get people to engage. Many feel shame around these conditions and do not want to come forward. They may fear a loss of respect or be worried about employment opportunities if people find out. This can be especially felt in small or insular communities (for example a rural community or an immigrant community). It’s true community members may judge people with these conditions. Mental health professionals and community leaders may sometimes reinforce these views. They may not offer come from recovery mindsets. As a result, it can be difficult to help communities as a whole shift these beliefs. Consideration of what will work for different communities must come from the communities themselves. Advocacy groups often speak for many. Keep in mind, while these voices are extremely valuable, good representation of racial, ethnic, or other diverse communities (rural, vets, etc.) is not always part of the leadership and agendas of all these groups.