Autism Speaks urges adapted hospital policies to allow support providers for autistic and disabled people

For people with autism and significant communication or behavioral challenges, even a typical hospital stay can be an overwhelming experience. Today, these challenges are amplified by COVID-19 restrictions, resulting in many people being denied access to supports that are crucial to their physical and emotional health. Often, family members or other caregivers are the patient’s primary advocate and voice on the healthcare team.  

Temporary COVID-related hospital policies prohibiting all visitors are leaving many people with autism and other disabilities without a way to participate in their healthcare decision-making, as reported recently in several states. 

For this reason, Autism Speaks urges federal and state agencies to issue guidance on protecting the rights of people with disabilities during the COVID pandemic. We also urge healthcare facilities to act immediately to protect the rights of people with disabilities to access equitable healthcare by: 

• Affirming that guardians or other support persons for people with autism or other disabilities are a reasonable accommodation under the Americans with Disabilities Act (ADA); 

• Providing an exception to visitor restrictions to allow a guardian or support provider at the bedside for patients with disabilities, as a critical member of the patient’s healthcare team; and 

• Including communication supports and behavior management in treatment planning in coordination with guardians or support providers. 

Autism Speaks applauds the 14 states* that have issued direct guidance to hospitals to grant exceptions to visitor restrictions for people with disabilities, allowing them a guardian or support person at their bedsides. This guidance is in line with the ADA, Section 504 of the Rehabilitation Act of 1973 and Section 1557 of the Affordable Care Act, which together prohibit discrimination in health services against people with disabilities.  

In lieu of federal, state or facility policy, autistic people and their families can access these tools to support them during hospitalization: 

• Autism Speaks guidance on preparing for an inpatient hospitalization and About me form 

• Emory Autism Center Medical Alert Information and My Medical Alert Passport 

• Porchlight Autism Education Series video on preparing for hospitalization 

• Autism Speaks Safety Tool Kit and Family Emergency Plan  

• Autism Care Questionnaire  

• COVID-19 Disability Form by State: Preparing Individuals with Intellectual/Developmental Disabilities for Medical Treatment at Hospitals 

The Autism Response Team is available to provide guidance, personalized resources and support at 888-AUTISM2 or help@autismspeaks.org. 

*This number was updated June 10, 2020, to reflect an increase of the number of known hospital policy exceptions from 12 to 14.