People with intellectual disabilities (ID) are one of the most medically underserved groups in the world and are often left out of most aspects of the health system, which has resulted in significant health disparities for this population. The intent of Inclusive Health is to support existing programs to become inclusive and accessible, rather than to create separate programs for people with ID. Including people with ID in existing health programs has the potential to improve health outcomes for people with ID while reducing health care costs for society. This resource provides practical information for any organization in the broader health system on how to take the first steps to make their policies and practices inclusive of people with ID to help close this gap in health outcomes.
People with ID face a number of barriers in the health care and public health system. Common barriers include:
- Attitudinal barriers – misconceptions that people with ID cannot live long and healthy lives
- Communication barriers – the use of complicated and inaccessible language
- Policy barriers – the lack of enforcement of existing laws regarding access to health
- Programmatic barriers – the failure to make reasonable accommodations for people with ID
- Social barriers – the conditions in which people are born, grow, live, learn, work, and age
- Physical barriers – structural challenges that block mobility
The four strategies outlined in this resource were created to help address these barriers and formed under two foundational principles of Inclusive Health: Equitable Access and Full Participation. Equitable Access means ensuring that people have access to the services and resources necessary to achieve their full health potential. Full Participation means that people with ID are fully and meaningfully included in health programs and services.
Organizations across the public health system can take action to remove barriers and improve access for people with ID to their services, as their patients, customers, beneficiaries, and clients. Here are the four strategies to help you start:
1. Welcoming Spaces: Ensuring your programs and physical spaces are accessible and welcoming to people with ID.
- Incorporate disability etiquette, including for intellectual disability, into internal staff training.
- Speak directly to the individual, not his or her companion, and let the person finish before responding.
- If you offer assistance, wait for the offer to be accepted and for specific instructions. If you aren’t sure what to do, ask.
- If you are having difficulty understanding a person, it is ok to ask them to repeat themselves.
- Operate under the assumption that people with ID are capable of making their own decisions.
- Explore how using Universal Design – the design of services or physical environments to be useable by all without adaptation – may be applied to your services or organization.
- Ensure your space or programs are in compliance with the Americans with Disabilities Act. Where possible, ask people with ID if there is a particular accommodation that might help them better use or benefit from your services.
2. Communication: Ensuring your communications, including written and spoken language, materials, and interactions with the community are accessible to people with ID.
- Use accessible language.
- Written materials should be in plain language, at no more than a sixth-grade reading level.
- Language should get to the point and avoid jargon, acronyms, and abstract statements.
- Provide in-person assistance to ensure individuals understand materials and are able to complete forms.
- Include images of people with ID in your promotional materials.
- Materials should also be available in other accessible formats like braille and large type.
3. Awareness and Training: Understanding your community and training your staff on the barriers and challenges faced by people with ID, including on how to remove them.
- Train staff and leaders on the barriers faced by people with ID and methods for how to overcome those barriers.
- Hire people with ID to provide input on and/or conduct the training.
4. Sustainable and Intentional Inclusion: Building intentional and sustainable inclusion by changing organizational culture to value and understand inclusion.
- Embed inclusion into your organizational culture.
- Incorporate disability rights and access into company policies and mission statements, including diversity statements.
- Incorporate inclusion into each program, service, or activity you offer.
- Partner with local disability organizations to learn how you can improve your inclusive practices.
- Include people with ID in the planning, implementation, and evaluation of programs, services, or activities.
- Hire people with ID to work at your organization in a meaningful capacity, both as a way of promoting a culture of diversity and inclusion and as an effective way to increase awareness of the need for inclusive practices.
The above strategies will help organizations embark on the first steps to adopting Inclusive Health. However, the beginnings of your Inclusive Health journey can come from simply engaging and interacting with people with ID. While there are many programmatic and operational changes recommended in this document, the first steps can stem from simply asking people with ID in your community how your program or service could work better for them.