Topic Videos 2021

Learn how CARES grantees are committing to health equity across the network.

The COVID19 pandemic created a national healthcare crisis, especially for the disability community. State policies to distribute limited resources, such as ventilators, led to discrimination against people with disabilities. In many states, disability rights leaders filed lawsuits and fought to have their voices heard. In contrast, Florida’s statewide disability organizations helped develop the crisis standards of care policy and related training for healthcare providers. 

To address this issue, the Lifespan Interprofessional Collaborative at the Mailman Center adapted its Disability Awareness & Sensitivity in Healthcare (DASH) curriculum to create a compelling yet brief online training course for medical professionals. The course focused on implicit bias surrounding disability and was especially targeted for medical triage teams activated in case of a shortage of ventilators. The content of the DASH crisis-triage training was informed by national guidelines and by members of a weekly statewide group of disability voices organized by the Florida Department of Health’s Disability and Health Office. The weekly calls gathered representatives from state agencies and organizations to collaborate on all fronts to support people with disabilities and medical complexities during the COVID-19 pandemic. This informal network allowed for rapid dissemination of the online training module, as it was clear that the training had broader potential for helping clinicians better address the health care needs of people with disabilities.

Sensory behaviors (SB) are 1 of the 4 Restricted and Repetitive Behavior (RRB) criteria for Autism Spectrum Disorder (ASD) in the DSM-5. Visual SBs are one of the most common repetitive behaviors in ASD and are an emerging area of scientific research that explores the brain-behavior connection. However, the increasing number of autobiographies by autistic authors provide another way of understanding visual sensory behaviors and experiences.

The goal of the study was to investigate visual sensory behaviors from autistic authors’ autobiographical accounts. This project accessed the “voices” of neurodiverse individuals in order to bring this type of information into a research and treatment field. This approach is consistent with inclusion and participation of those with disabilities in research studies. In addition, this project was done in the context of LEND training, so that future leaders gained experience in applied research that was inclusive of the disability community.

The North Carolina Navigating Care Project developed an online Family Navigation Guide that will be accessible to families and can be used by family navigators in partnership with families. The Guide is designed to assist families with young children in better understanding and finding resources for developmental monitoring, developmental and autism screening, and accessing early intervention services. In addition, the guide will provide information and resources for families in six life domains areas including Healthy Living, Daily Life & Education, Safety & Security, Community Living, Social & Spirituality, and Advocacy & Engagement.

The North East Regional LEND Consortium worked with the Institute for New England Native American Studies to connect LEND program expertise with Native Tribal communities’ expressed needs to better understand the children in their communities who are autistic or have intellectual and developmental disabilities. Cultural issues and perceptions play a key role in understanding family and school communication, family needs and priorities, and system responses to those priorities.