Chapter 1: Building a Disability Accessibility Program

Implementing accessible care for patients with disabilities starts with engaging people with disabilities within your community and organization. Navigating healthcare as someone with a disability is best understood by people with disabilities. Engaging people with disabilities will build trust, inform your understanding, and ensure you meet your community’s needs.

Actions and Tasks

1. Include people with disabilities and caregivers of people with disabilities into existing patient advisory boards.
2. Consider developing a disability-specific patient advisory board.
3. Solicit feedback from patients with disabilities about the quality of care delivered within your organization.
4. Solicit feedback from people with disabilities in your community about challenges they may face when accessing care at your organization.
   • Feedback could be collected by integrating disability accessibility questions in patient feedback surveys, focus groups, listening sessions, sharing circles, or partnerships with local disability groups.
   • Ensure there are multiple opportunities and modalities for providing feedback.
5. Review existing feedback and complaints from patients with disabilities.
6. If available, engage your disability employee resource or affinity group.
7. Share accommodation and accessibility features at your organization with your community through community seminars, conferences, or other means.
8. Partner with and support the visibility of nearby disability organizations to build trust with your local disability community.
   • For example, invite an organization to set up a booth in your clinic or hospital to advertise their services.
9. Ensure marketing and communication materials are inclusive and representative of people with disabilities. Use appropriate disability language.

Across all efforts, it is important to engage people across varying types of disabilities, racial and ethnic identities, sexual and gender identities, levels of health literacy, age groups, as well as caregivers of people with disabilities.

Materials and Resources

• Appendix 0.1: Definitions↗
• Appendix 0.2: Appropriate Disability Language↗
• Appendix 0.4: Disability Organizations↗
• Effectively Including People with Disabilities in Policy and Advisory Groups↗
• Creating an Accessibility Committee↗
• Creating Family and Patient Advisory Councils↗

Appendices 0.1, 0.2, and 0.4 can be accessed in the General Resources chapter↗.

Building an accessibility program requires system level engagement, including support from your organization’s leadership. Leadership support will ensure you have the necessary resources to make meaningful change. You will likely need to continue to engage leadership throughout building and sustaining the accessibility program. Each of the subsequent chapters in this guide includes suggestions to engage leadership.

Actions and Tasks

1. Identify what types of leadership support and buy-in you will need.
2. Identify potential champions across your organization.
   • Often, champions are individuals who work in disability specific disciplines (e.g., rehabilitation), are people with disabilities, or are people who have family members with disabilities.
3. Identify how a disability accessibility program will fit within your organization’s existing priorities and initiatives (e.g., health equity, quality and safety, patient experience goals).
4. Determine if your organization is involved in regulatory initiatives that align with a disability accessibility program (e.g., Joint Commission Excellent Health Outcomes for All Certification, U.S. Centers for Medicare and Medicaid Services (CMS) requirements, state-level requirements, etc.)
5. Identify potential concerns leadership may have and possible solutions.
6. Create necessary charters, strategic plans, and presentations to present to leadership and garner their support.

Materials and Resources

• Appendix 0.3: Federal Requirements for Providing Accessible Care↗
• Appendix 0.10: Leadership Support: Key Individuals↗
• Appendix 1.2: Accessibility Program Implementation Planning
• Appendix 1.3: Accessibility Program Barriers and Strategies
• Appendix 1.4: Accessibility Program Costs and Funding
• Appendix 1.5: Accessibility Program Leadership Support Slides Template

Appendices 0.3 and 0.10 can be accessed in the General Resources chapter↗.

Identify the current state of accessibility initiatives and activities at your organization.

Actions and Tasks

1. Identify what disability accessibility initiatives are currently happening, including who is leading the work and the department or unit the work is happening within.
2. Engage with other healthcare organizations to understand their healthcare accessibility programs, including what is and isn’t working for them. Consider joining the Disability Equity Collaborative’s Leaders workgroup to create a peer network.

Materials and Resources

• Appendix 0.7: Accessibility Screening Tool Template↗
• Appendix 0.8: Disability Accommodations Examples↗
• Appendix 1.1: Accessibility Program Needs Assessment
• Disability Equity Collaborative’s Leaders Workgroup↗

Appendices 0.7 and 0.8 can be accessed in the General Resources chapter↗.

Identify the activities of your accessibility program. Activities could include but are not limited to documenting disability status in the electronic health record (EHR), purchasing accessible diagnostic equipment, and conducting disability competency training. The activities will be informed by your Needs Assessment, engagement with the disability community, institutional priorities and resources, and the structure of your accessibility program.

Actions and Tasks

1. Identify existing activities and how they will be incorporated in your new accessibility program.
2. Identify new, high priority activities to include in the accessibility program (i.e., those related to legal compliance).
3. Identify new, low priority activities that should be implemented in the future.
4. Identify current funding and potential funding resources for your activities.
5. Review federal, state, and accreditation requirements to ensure your activities are compliant.

Materials and Resources

• Appendix 0.3: Federal Requirements for Providing Accessible Care↗
• Appendix 1.4: Accessibility Program Costs and Funding
• Appendix 1.6: Accessibility Program Activities
• Appendix 1.7: Accessibility Program Activities Priority Worksheet

Appendix 0.3 can be accessed in the General Resources chapter↗.

To establish an accessibility program, your organization will need to determine where the program is situated within the organization at large. This is influenced by available funding and resources, priority activities, and the Needs Assessment.

Actions and Tasks

1. Identify department(s) the program will exist in. Consider integrating your accessibility program’s goals and objectives into your organization’s existing quality improvement, patient safety, or population health initiatives.
2. Determine if accessibility activities will be driven by a single or multiple departments.
3. Determine what position(s) will oversee the accessibility program or the different aspects of the accessibility program.
   • Create and post job descriptions as needed.
4. Create an advisory committee to oversee the accessibility program. This should include key institutional members, as well as people with disabilities.

Materials and Resources

• Appendix 1.6: Accessibility Program Activities
• Appendix 1.8: Accessibility Program Organizational Structure
• Appendix 1.10: Example Disability Coordinator Job Description
• Effectively Including People with Disabilities in Policy and Advisory Groups↗
• Creating an Accessibility Committee↗
• Creating Family and Patient Advisory Councils↗

Using the information identified in the Needs Assessment, complete the Implementation Planning worksheet to create a plan for developing an accessibility program at your organization.

Actions and Tasks

1. Define goals and successful outcomes of your accessibility program. Create a workplan and timeline to achieve your goals.
2. Identify how you will measure progress.
   • Identify relevant data sources to measure success (e.g., quality and safety data, adverse inpatient outcomes, etc.).
   • Identify how you will include patients’ perspectives in your evaluation (e.g., patient experience surveys or focus groups).
3. Using Appendix 1.9: Accessibility Program Monitoring Progress and Adaptations, execute and document any needed adaptations.
4. Federal, state, and accreditation requirements update frequently. Closely monitor these requirements to ensure your program is compliant.

Materials and Resources

• Appendix 0.6: Project Planning↗
• Appendix 1.1: Accessibility Program Needs Assessment
• Appendix 1.2: Accessibility Program Implementation Planning
• Appendix 1.7: Accessibility Program Activities Priority Worksheet
• Appendix 1.9: Accessibility Program Monitoring Progress and Adaptations

Appendix 0.6 can be accessed in the General Resources chapter↗.

Chapter 1: Building a Disability Accessibility Program was supported by the WITH Foundation under award number 233752. Under this award, an advisory board was convened to support the development of this chapter. Advisory board members included Zary Amirhosseini, Dr. Kara Ayers, Lindsay Baran, Sherri Rita, Dr. J.R. Rizzo, Adreinne Robertiello, Sarah Triano, Wendy Sultzman, Hope Collins, and Rebecca Zickerman.

We would also like to express our gratitude to Kori Eberle, Jennifer Halfacre, Lynne Brady Wagner, and Ellie Mellor for their contributions and review of this chapter. Additionally, we would like to thank the members of DEC’s Leaders workgroup and Standards & Guidelines workgroup for their input and suggestions.