Glossary

There is a veritable alphabet soup of terms in the field that I will try to define and explain here. While I’ve used resources and experience to inform them, these definitions are my own. This list will grow over time, and I am happy to add things to this list as requested.

PUNS

Prioritization of Urgency of Need for Services: Illinois’s waiting list for Home and Community Based (HCBS) Medicaid waiver services for people with Intellectual and Developmental Disabilities. Names are drawn from the list annually to deliver Home and Community Based Support (HCBS) through the waiver. Illinois agreed to the Reasonable Pace Proposal, in which it agreed that no individual will be on the list for longer than 60 months– in May 2019.

ISC

Independent Service Coordinator: An agency tasked with working with families and stakeholders in identifying and arranging for Medicaid waiver services for a person with an Intellectual or Developmental Disability. They are independent in that they are neutral parties to both Illinois’s Department of Human Services and the private companies that provide supportive services. A list of regions and their associated agencies can be found here.

IDHS-DDD

Illinois Department of Human Services- Division of Developmental Disabilities

CILA

Community Integrated Living Arrangement: A form of supportive housing offered through the HCBS waiver. CILAs can be well understood as a single family home outfitted for compliance to state standards (e.g. locked medication cabinets, fire exit info, etc.). These are a stereotypical group home, often with roommates and minimal support.

SODC

State Operated Developmental Center: Institutional placement that is inherently the most restrictive available residential option. The only residential placements in which mechanical restraints are still allowed. I have spent most of my career trying to find ways to help people avoid placement in these places.

OT

Occupational Therapy/Therapist: OTs help people to address challenges that impact activities of daily living such as bathing, cleaning, or moving around the house. In the context of I/DD support, Occupational Therapists can provide support in improving gross and fine motor skills, addressing sensory needs/challenges,

SLP

Speech and Language Pathologist: Clinicians trained in promoting communication. This can be through coaching skills to address speech challenges, practicing the use of verbal communication, or by promotion of Alternative and/or Augmentative Communication (AAC) ranging from PECS to Eyegaze.

ABA

Applied Behavior Analysis: This is a topic that warrants several blog posts in and of itself. In short, the current most popular method of “treating” Autism Spectrum Disorders that is embroiled in controversy over its efficacy and impact on its recipients. I was trained in ABA as a Registered Behavior Technician and worked under several Board Certified Behavior Analysts (BCBA) and those at the doctoral level (BCBA-D). Until I became aware of the controversy I intended to pursue a BCBA education and certification and am still told now that I think like a behavior analyst.

I/DD

Intellectual/Developmental Disability: An overly broad, catch-all term for conditions that describe those whose genetics, brain chemistry, environment, neurological structure, or any combination thereof affects a person’s developmental trajectory as to be substantially different from the norm. The differences can range from mild as to where “differently abled” might be an appropriate description, all the way to conditions that are only just barely compatible with sustaining life. This term captures the most clinically diverse population in existence.