Communication Bill of Rights: Guiding Services for People With Severe Disabilities in the Context of COVID-19 and Systemic Racism 

The National Joint Committee for the Communication Needs of Persons With Severe Disabilities (NJC) is committed to advocacy and support for individuals with significant communication support needs resulting from intellectual disability that may coexist with autism, sensory, and/or motor limitation. As systemic racism and COVID-19 influence lives, we are particularly concerned about their impact on persons with severe disabilities.

The Communication Bill of Rights was developed to ensure the basic rights of persons with severe disabilities to affect, through communication, the conditions of their existence. The NJC is compelled to draw attention to the Communication Bill of Rights and its particular relevance in this moment. Among the 15 rights in the Communication Bill of Rights are several that specifically address issues that we face today—such as the right to establish and maintain social interactions during a time of isolation, the right to be treated with dignity and respect, the right to have culturally and linguistically appropriate communications, and the right to access information to address questions and concerns.

As members of the NJC, we are aware that:

• Many persons with severe disabilities have been cut off from friends and families as the facilities where they live have been locked down.
• There has been limited access to technologies and services that support communication, especially from a distance.
• Familiar care providers have not been able to provide ongoing services and supports.
• Masks alter communication and present barriers to communication success while feeling aversive to many persons with severe disabilities.
• Physical distancing is contrary to the types of supports and services that many persons with severe disabilities require.
• Information about precautionary measures and changes in routines is not being provided at all—or, if it is being provided, it is being done in ways that many persons with severe disabilities cannot fully understand.
• There is a history of systemic racism that has negatively impacted service delivery for persons with severe disabilities who are Black, Indigenous, and People of Color (BIPOC).

Some steps that we can take to promote the communication rights of all persons with severe disabilities in this moment and moving forward include:

Review the Communication Bill of Rights, and distribute it widely.

• Post it on social media outlets.
• Draw attention to it when it is posted in common areas.
• Share it with families, caregivers, and service providers.

Help persons with severe disabilities understand and advocate for their communication rights.

• Talk about communication rights using systems that best support comprehension.
• Provide specific examples that are relevant to the lives of the individual.
• Become so familiar with the rights that you can explain them and relate to them in the moment.

Use the Communication Bill of Rights to:

Guide respectful interactions and advocacy.

• Ensure that all communication partners are aware of the Communication Bill of Rights.
• Assess your own interactions relative to the rights.

Provide culturally responsive supports and services for persons with severe disabilities.

• Ensure that symbols used in interactions with persons with severe disabilities reflect cultural and linguistic diversity.
• Create and share personalized materials reflective of the individual’s lived experience.

Evaluate existing and new programs and actions regarding programs and services for persons with severe disabilities.

• Assess your program’s policies, practices, and actions related to supporting the communication needs of persons with severe disabilities.

Amplify the voices of persons with severe disabilities who are BIPOC.

• Support individuals with severe disabilities in sharing about their lived experience—and, with permission, share it with others.