Self-Advocate Sentinel: Creating a Culture of Coaching

Melanie Hecker, MPA

In our last article, we described how it is damaging for Direct Service Providers (DSPs) to view their role as one of discipline and authority. As an alternative to this viewpoint, we proposed DSPs instead view their role as one of helping consumers with the goals the consumers themselves set, on their own terms. Helping consumers on their own terms can be seen as “coaching” the consumer, as opposed to treating them like a jailer. To normalize a view of DSPs in “coach” roles, direct service agencies need to create organizational cultures of coaching. Cultures of coaching can be created with the following methods.

Incorporating the Voices of People with Disabilities

It is common for DSPs to not understand why consumers are behaving in a manner which they consider to be inappropriate. People with developmental and intellectual disabilities perceive the world, experience emotions, and interact with the world differently from non-disabled people. These differences can cause non-disabled DSPs to be unable to interpret or misinterpret the underlying reasons behind their consumer’s behavior. When a DSP cannot perceive the true reasons behind consumer’s perceived “misbehavior”, they feel that all they should do is punish or scold the person they are working with. If the person’s behavior is mistakenly perceived as rude, inpatient, or attention-seeking, the consumer can be viewed as a “behavior problem”, when they are trying to get a need met. To identify the true causes of perceived “misbehavior”, organizations need to actively incorporate the voices of people with disabilities.

People with disabilities need to be included in every aspect of direct service organization. The first, and most important area in which people with disabilities need to be included is on organization’s board of directors. Every direct service provider agency needs to have at least two people with developmental disabilities on their board of directors. This representation will ensure that the true needs, motivations, and goals of people with disabilities are incorporated into organizational decision making.

These needs, motivations and goals can also be incorporated into day-to-day practice by recruiting people with developmental disabilities to train your staff. During these trainings, people with disabilities can pinpoint the root causes behind perceived “misbehavior” and inform your staff on how to address these root causes. In addition to identifying and addressing root causes of “behavior”, trainers with disabilities can teach staff how to help their consumers with the goals consumers set themselves. To help consumers reach these goals, it is also necessary to establish a Self-Advocacy program at your organization. In this program, consumers can voice what types of changes they need in the organization or in society at large. Finally, organizations will need to tailor their programs to what people with disabilities want and need by regularly surveying consumers. These surveys need to be targeted directly at the consumers, and not solely at their families or caregivers.  

Fostering a Respectful Organizational Culture

All organizations, whether they are private businesses, government agencies, or not-for-profit agencies, have a unique organizational culture. Organizational culture can be defined as the shared values, tendencies, and norms in an organization (Abolafia, 2020). Factors which influence organizational culture include, but are not limited to:

  • Stories passed down from supervisor to employer
  • The “heroes” and “outlaws” highlighted in organizational stories
  • Organizational symbols, including logos, apparel, slogans, etc.
  • Daily rituals and practices in the organization

It is extremely common for the cultural factors in I/DD service organizations to lead to the adoption of “Jailer Model” norms, values, and tendencies. Stories passed down from supervisor to employer might highlight “redirecting” or disciplining a consumer rather than solving the root cause of their behavior. Rituals and practices can include scolding or punishing a consumer when they attempt to self-advocate. The assumptions and values these actions lead to result in a culture where people with I/DD are not respected.

To create a respectful organizational culture, you need to harness these elements in way which promotes respect of consumers. These can include:

  • Passing down stories which highlight respecting consumer’s needs, wants and desires
  • Highlighting employees who respect consumers in stories and testimonies
  • Introducing respectful slogans, logos, etc.
  • Introducing rituals which promote consumer respect, such as Strength Spotting
  • Praising and rewarding employees for respecting consumers

Creating Equal Partnerships Between Consumers and Staff

A condescending or paternalistic attitude towards consumers can derive in part from the service provider viewing themselves as an absolute authority. This authoritarian mindset can lead to several problems, including:

  • Dismissing the voices of people with disabilities
  • Abuse or neglect due to power imbalances
  • Lack of consideration for underlying reasons of behavior

To truly serve the needs of consumers, direct service providers need to think of themselves as equal partners rather than disciplining authorities. Here are some dos and don’ts for creating equal partnerships between consumers and staff:


  • Apply “The Golden Rule” to consumers. Treat them the way you would want to be treated if you were in their position.
  • Normalize apologies to consumers. This validates the consumer’s feelings and creates an equal power dynamic. Try to apologize to a consumer at least once per week.
  • Be self-introspective. Try to find out if your behavior is causing problematic tendencies in consumers.
  • Inform consumers that their behavior may be bothering others, rather than scolding them for it. It is likely that the consumer did not know their behavior is bothersome to those around them. Scolding the consumer will cause them to see you as a bully rather than a helper.


  • Force consumers to apologize to others. This creates an uneven power dynamic.
  • Allow your staff to behave in ways you would consider to be unacceptable from a consumer. If you would desire to discipline consumers for being rude to others, swearing, or insulting their peers, you should not allow your staff to act in these ways around or especially towards consumers. Enforcing these etiquette rules on consumers but not staff implies these rules only exist for the purpose of subjugating the consumer.
  • Coerce adult consumers into participating in programming against their will. This action not only actively denies the consumer autonomy but enforces messaging of consumers not being granted the right to have a say in their lives.
  • Mandate consumers to respect their staff regardless of how the staff act towards the consumers. Once someone has bullied, abused, neglected, or harassed another person, they have lost the right to their victims’ respect. Requiring consumers to respect a staff who has victimized them implies:
  • The feelings, rights, and well-being of the service recipient do not matter
  • Staff are incapable of committing wrong actions
  • Direct Service Providers are above criticism.

Where Do We Go from Here?

The intent of this article was to provide tools for promoting respect and autonomy of consumers. These tools encourage service providers to look beyond a consumer’s behavior and consider the underlying reasons behind their actions. However, a direct care staffer or program administrator may still encounter situations in which they feel the need to intervene with a consumers’ behavior. In the next article, we will introduce a flowchart to aid in making decisions about perceived “inappropriate” actions.


Abolafia, M. (2021) Managing Behavior in Public and Not for Profit Organizations; Lecture 6.