Written by Dr. Amanda Kelly
For many learners in the Firefly Autism community, attempting to access supports and services outside of Firefly comes with an enormous amount of fear and uncertainty. We often hear about learners being removed from day treatment or alternative activity programs, and/or an inability to find any suitable residential or day treatment care. The reality is that levels of ability and behaviors can create significant barriers to accessing needed care and supports. The Profound Autism Alliance recently conducted a nationwide caregiver survey and found that 80% of individuals with profound autism have been outright denied the opportunity to participate in community programs because of their support needs, with 63% asked to leave a program due to behaviors and 69% denied access to healthcare, respite or school. Behind every statistic is a family fighting for care.
In most cases, it’s not a lack of willingness that keeps organizations from accepting individuals. The reality of limited staff, inadequate space and resources, and insufficient training make it difficult to provide the level of support our most vulnerable community members need. On top of that, there are no financial incentives to include them, and the costs of care increase significantly as support needs rise. Ensuring continued education regarding the complexities of significant support needs is key.
Firefly Autism’s Training and Consultation program hopes to offer solutions. The program focuses on developing train-the-trainer systems and a consultative support model that can be implemented internally. This approach helps establish an independent support infrastructure, promoting the long-term self-sufficiency of the inclusion model and reducing the need for full-time consultants or new staff. By empowering internal team members with the right skills and knowledge, the program ensures that these models can operate efficiently and effectively, minimizing reliance on external resources over time.
The crisis of exclusion for individuals with significant support needs will not be solved overnight, but we can make meaningful progress with intentional strategies and collaboration.
