It's been four years since CRAAG published our initial article on the Supports Intensity Scale (SIS-A). In that article, CRAAG expressed concerns about the appropriateness of this tool for accurately assessing the support needs of adults with autism.
CRAAG wrote: "AAIDD asserts that the SIS is valid for all individuals with intellectual and developmental disabilities, including autism, because these individuals were part of population that was "normed with the SIS." However, most of the AAIDD's writings refer only to individuals with intellectual disabilities, and this makes us wonder."
After publishing the article raising our concerns, representatives of CRAAG were asked to join the SIS Stakeholders Group, a group mandated by Virginia's General Assembly to oversee the implementation of the SIS in the DD waiver system. Our representatives have attended annual meetings from 2019 to the present.
From AAIDD’s 2022 stunningly transparent announcement about a new SIS-A-2, we learn that far greater proportion of people in the SIS-A-2 representative sample have a primary or secondary diagnosis of autism, largely because of the increased incidence rate, and because this new sample is being characterized as having autism specifically, versus a more generic “IDD” diagnosis, which is how the SIS-A-1 was developed. The update was inspired in part by the need to align the tool’s representative sample with the current demographics of the population served by state DD agencies, which increasingly consists of adults with autism.
CRAAG was right, there were few people in the original sample who were identified as having autism. It is important for all autism families and self-advocates to read and understand the featured SIS article below. Please click on the link below and at a minimum read the six recommendations on pages 4-5. CRAAG is coordinating with autism advocates and organizations to spread the word on the importance of engaging with DBHDS and DMAS around the new rate setting formula.
CRAAG takes pride in having correctly identified that the SIS-A and ABE algorithm underestimated the support needs of adults with autism. We are hopeful that the updated SIS-A-2 will better assess the support needs of adults with autism.
However, families and self-advocates will only see an improvement if Virginia chooses equity over cost-containment in establishing in creating a new rate setting formula. Our community has already suffered due to insufficient support for their loved ones and we want to see increased support based on a more accurate assessment of support needs identified in the updated SIS-A-2.
The clock is ticking on an 18-month transition for state DD agencies to begin using the new version by June 30, 2024. Over the remaining 15 months of the transition to the implementation of the SIS-A-2 and a new rate setting formula, CRAAG intends engage our readers in advocating for equity in Virginia's Home and Community-Based Services (HCBS) Waiver System.
Please click the link below to read the full article and obtain a deeper understanding of this critical issue.
For more information please email CRAAG!
