Ohio Includes Stakeholders of All Abilities in Public Health Planning

February 24, 2023 | Bobbi Krabill, Ann Ramer

“Nothing about us without us” is a phrase commonly used in the disabilities community to remind policy makers that the people whose lives, health, wellness, housing, employment, or relationships may be impacted by a decision should be part of the planning process. Fundamentally, it’s important to include the people we serve in the decisions that will impact them, so we must reach out to partner organizations and to the public to seek their input.

Aside from legal considerations that protect the rights of people with disabilities, it is our ethical responsibility to provide an environment that meets the needs of all potential participants in our convenings, engagements, and events. The effort to make events truly inclusive ensures that un- and underrepresented voices will be heard.

We encounter people with unique needs every day and don’t even realize it. In the absence of accommodations for people living with disabilities, we don’t know who’s missing from the discussion. Evidence of diverse engagement is required to achieve accreditation through the Public Health Accreditation Board and is an increasingly important deliverable on grant-funded projects.

Ohio’s Inclusive Stakeholder Event

The Ohio Department of Health (ODH), with funding and technical assistance from ASTHO, implemented a project to engage Ohioans with disabilities to identify opportunities to create public health preparedness plans that better meet the needs of people with access and functional needs. The project brought together Ohioans representing a broad array of abilities and challenges, racial, ethnic, and socio-economic backgrounds, and lived experiences.

Conducting an in-person event proved challenging, particularly during COVID-19 surges, but convening this event also presented a perfect opportunity for the state to strengthen its knowledge base about appropriate accommodations for accessible and inclusive activities. Many attendees indicated their participation was made possible because of the ASTHO-supported accommodations and funding. One self-advocate attendee remarked, “Thank you for this opportunity to come and give input, providing services and stipends to allow it to happen. I missed two days of work, so having that to offset work I missed was very nice.”

Participants provided nuanced and valuable feedback about how Ohio could meaningfully prepare to meet the needs of people with disabilities in a health response or other public emergency. State personnel received enhanced learning and hands-on experience serving Ohioans with access and functional needs. One ODH participant stated, “I (also) appreciated the diversity at my table. Between the self-advocates and caregivers with their different disabilities, it made for an incredible depth and variety of experiences that made the discussions incredibly fruitful.” The relationships built between a diverse group of stakeholders will extend beyond the lifespan of the project.

Promote Accommodations as Part of Event Recruitment

For many audiences, recruitment is largely about connecting with potential attendees’ topical interests. For most, the question of attending is answered by whether their schedule can accommodate the event. But for approximately a quarter of the U.S. population who live with a disability, the decision to participate is not merely a matter of interest and availability. Indeed, there are many factors that disability self-advocates must arrange and consider in order to participate.

For public health to truly be inclusive of all stakeholders, we must anticipate accommodations for unique needs as part of event planning. Such accommodations include:

1. Durable medical equipment including Hoyer lifts and hospital beds for attendees.
2. Tactile and American Sign Language (ASL) interpretation.
3. A range of dietary needs, restrictions, and supports.
4. Including caregivers and direct support professionals.
5. Provisions for support animals.
6. Support services for participants who are blind or have low vision
7. Incorporating assistive technology.
8. Stipends to compensate participants for their time.

Event planners should communicate to participants about available accommodations. Information about accommodations should be included in recruitment materials so that self-advocates feel valued and welcomed and are more likely to consider participation in your meeting or event. The application for the Ohio event included specific questions about the self-advocate’s needs (such as those mentioned above) rather than asking the yes-no question of whether someone requires accommodations. Most of the participants noted that they had never been asked about their specific needs ahead of a meeting. A self-advocate attendee noted, “No one has ever asked me what accommodations I need to make participating possible.”

To support a culture of inclusion in stakeholder interactions, state and territorial health agencies can:

• Train staff about disability etiquette and access and functional needs so they understand why it is important to include people living with disabilities (and how to include them).
• Communicate to employees and stakeholders that accessibility accommodations are available for meetings and clearly demonstrate how to request those accommodations.
• Be consistent in making accommodations available. This should be the standard for meetings rather than the exception.
• When possible, include those living with disabilities as part of the planning and implementation of events. Hire employees and contractors that have access and functional needs.
• Include the costs of providing accommodations in your project budgets. Ensure contracts and/or agreements are in place to meet common needs (e.g., interpreters, technology, facilities that demonstrate an ability to serve diverse populations).
• Do not presume that the accommodations you provided couldn’t be improved. Follow up with participants to understand needs and continually increase the accessibility of meetings and workgroups.

While it takes both time and money to host fully accessible meetings, the community benefits from this investment by having all voices, especially of people who are most vulnerable, represented in emergency planning, It is vital to take note of those who are underrepresented in focus groups, to identify the barriers to their participation, and then conduct intentional outreach so meetings can provide a comprehensive assessment of the community needs.