Tip #105 Bridging Gaps, Navigating Power: Advocacy When Caregivers Overshadow Input

  

Supporting the Adult Population as a Board-Certified Behavior Analyst (BCBA)

Tip #105 Bridging Gaps, Navigating Power:  

Advocacy When Caregivers Overshadow Input

Imagine a case where the guardian is advocating for environmental changes to improve the well-being of their loved one receiving services. The guardian requests restrictive measures, such as cameras in the bedroom, removal of internet or cellular devices, or dietary changes like eliminating soda and sugary foods. As a BCBA, you observe that the individual being supported is engaging in increasingly distressed behaviors as these changes are implemented. It's a domino effect: the individual exhibits a behavior, the guardian requests another removal or addition, and the situation worsens over time.

Throughout this process, the individual being supported has no say in their own care; the guardian drives all decisions. You notice staff burnout from providing continuous support, an increase in the magnitude and intensity of the individual's distressed behaviors, and a sense that no matter what you do, things are deteriorating. The question is: what do you do next?

According to the Ethics Code for Behavior Analysts (BACB, 2024), Code 3.01: Responsibility to Clients states:

'Behavior analysts act in the best interest of clients, taking appropriate steps to support clients’ rights, maximize benefits, and do no harm. They are also knowledgeable about and comply with applicable laws and regulations related to mandated reporting requirements.'

If you support adults, you've likely experienced this scenario. If not, be forewarned that this is an issue you will likely need to address in the future. Sadly, many state laws and policies prioritize guardianship, often granting the guardian final say in all decisions, leaving the individual receiving support without input. While we must adhere to our Ethics Code, guardianship presents certain limitations. Here are considerations when supporting the adult population:

Shift Towards Least Restrictive Alternatives:

Modern legal and ethical frameworks prioritize maximizing the autonomy of individuals with intellectual disabilities. This means that full guardianship is increasingly being replaced by limited guardianship or supported decision-making models, which tailor support to specific needs. Courts are moving to ensure that full guardianship is granted only when absolutely necessary.

Varied Types of Guardianship:

Guardianship can encompass different levels of authority, including "guardianship of the person" (decisions about care) and "guardianship of the estate" (financial management). Limited guardianship allows for specific areas of responsibility, while full guardianship grants broad authority. State laws dictate the precise types of guardianships available.

Court Oversight and Individualized Needs:

Courts play a crucial role in determining the necessity and scope of guardianship, ensuring it aligns with the individual's best interests. Factors such as the individual's ability to care for themselves and make sound financial decisions are considered. The process involves careful evaluation and ongoing monitoring to protect the individual's rights.

To ensure compliance with the Ethics Code, state laws, and organizational regulations, always familiarize yourself with your organization's and state's policies before implementing the following recommendations. Let's consider this action plan in chronological order when advocating for the individual being supported:

1. Gain input from the individual receiving services.
2. Assent practices.
3. Importance of data.

1. Gain Input From the Individual Receiving Services:

Always seek input from the individual receiving services. Regardless of their communication mode (verbal or nonverbal), ensure they are aware of environmental changes. This promotes autonomy and allows for their input. Typically, if the individual expresses opposition to the changes, you can use this as a platform to advocate on their behalf and inform the guardian. This provides an opportunity for collaboration with the care team, using a collaborative approach. This is not about dismissing the guardian's input; it's about considering both parties (i.e., the guardian and the individual supported) and collaborating to identify mutually agreeable solutions. Remember, ignoring the individual's voice and implementing environmental changes may exacerbate distressed behaviors.

Below are additional recommendations for professional development when demonstrating advocacy:

• Focus on Advocacy for the Individual Being Supported: Share educational tools, such as videos or articles, with the guardian or care team to illustrate the impact of decisions when the individual's voice is not heard.
  • YouTube Video: The Art of Advocacy - https://www.youtube.com/watch?v=grNdlowOFM
• Education on Ableism Culture: Educate yourself about ableism to discern when and how to advocate.
  • Peer Review Journal: Arthur, S. M., Linnehan, A. M., Leaf, J. B., Russell, N., Weiss, M. J., & et al. (2023, June). Concerns about Ableism in Applied Behavior Analysis: An Evaluation and Recommendations. Education and Training in Autism and Developmental Disabilities, 58(2), 127-143.
• Education on Difficult Conversations: Prepare for potential resistance by educating yourself on how to conduct difficult conversations, minimizing escalation with the guardian or care team.
  • YouTube Video: Mastering Tough Conversations: Effective Strategies for Better Communication by Jefferson Fisher- https://youtu.be/4qUr5QnBRzg?si=a-i12YLf9nkC5ttQ

2. Assent Practices:

If the guardian remains adamant despite the individual's input, implement a framework to ensure assent practices. This can be a protocol with criteria emphasizing that if the individual demonstrates a behavior's duration, frequency, or intensity over an extended period, the team can revisit plan modifications. This allows the individual to adjust to changes, potentially preventing distress, or enabling immediate intervention to prevent safety concerns. Encourage the individual to try the changes during the criteria period and offer a care team meeting within three months to assess effectiveness and provide an additional platform for the individual being supported voice.

Additional resources to promote assent practices:

• Treatment Planning: How to Document Assent and Assent Withdrawal: This template, created by me, promotes advocacy and ensures individual voices are heard, regardless of verbal ability. Integrate it into the Communication Abilities or Proactive Strategies sections of the Functional Behavior Assessment and Behavior Support Plan.
  • Link to resource: https://drive.google.com/file/d/18B1iAm9-vX2rJC0IrfYg3kAxXisOf8Ps/view?usp=sharing
• Ongoing Professional Development: Find CEU events, books, or articles on assent practices in ABA to increase competency.
  • Peer Review Article: Cassi A. Breaux & Kristin Smith (2023) Assent in applied behaviour analysis and positive behaviour support: ethical considerations and practice recommendations, International Journal of Developmental Disabilities, 69:1, 111-121, DOI: 10.1080/20473869.2022.2144969
• Utilize TikTok: TikTok provides examples and short demonstrations of assent. Consult your supervisor for guidance to ensure content is applicable to your organization and case, as much of the material focuses on children.
  • Keyword Search TikTok: "Client Assent ABA"
  • Link: https://www.tiktok.com/discover/client-assent-aba

3. Data:

Data is crucial for decision-making and advocacy. Use documented anecdotal reports, various data collection methods (frequency, partial interval, whole interval, etc.), medical records, and assessment results. Remember:

• Is There Data? Review data before making environmental changes. Avoid drastic decisions based on historical records without recent data. If data exists, ask if the event occurred within the last two years. If not, consult your supervisor.
• Document Efforts: Document all contacts and meetings to create a paper trail, protecting yourself during audits or investigations.
• Data Monitor Progress: Use data to monitor progress and advocate for the individual. As BCBAs, we rely on data, not personal bias.

By prioritizing the individual's voice, implementing assent practices, and utilizing data-driven decision-making, BCBAs can navigate these complexities and uphold their ethical obligations. Together, we can ensure that the individuals we support lead fulfilling lives with dignity and respect.

If you read this, the seed has been planted... the question is how are you going to apply it...

From the one and only... Shanda J Your BCBA

(Full disclosure: ChatGPT was utilized to find the resources and to edit and modify the original version of this document )

References: 

Autonomy, Decision-Making, and Guardianship - AAIDD. (n.d.). Retrieved from https://www.aaidd.org/news-policy/policy/position-statements/guardianship

Behavior Analyst Certification Board. (2024). Ethics Code For Behavior Analyst. [PDF]. Retrieved on https://www.bacb.com/wp-content/uploads/2022/01/Ethics-Code-for-Behavior-Analysts-240830-a.pdf

Brown, S. (2024). Treatment planning: How to document assent and assent withdrawal. Dot T Mental Health Alliance. [PDF Handout] 

Guardianship and Protecting Your Loved One with an Intellectual Disability. (n.d.). Retrieved from https://www.czepigalaw.com/blog/guardianship-protecting-loved-one-intellectual-disability/

Guidelines for Guardians of Adults with Intellectual Disabilities - May Institute. (n.d.). Retrieved from https://www.mayinstitute.org/news/acl/asd-and-dd-adult-focused/guidelines-for-guardians-of-adults-with-intellectual-disabilities/