The SIS started from a good place. The American Association of Intellectual and Developmental Disabilities (AAIDD), the world’s oldest and largest interdisciplinary organization of professionals concerned with intellectual and related disabilities, asked this question: "what practical supports does a person with an intellectual disability need to live independently in the community?" Finding no suitable tool to answer that question, the AAIDD designed a new one - the Supports Intensity Scale (SIS) . The AAIDD website explains that the tool was developed "over a five-year period from 1998 to 2003 and normed with over 1,300 culturally diverse people with intellectual and developmental disabilities aged 16–72 in 33 states and two Canadian provinces." AAIDD is the publisher, copyright holder, and sole owner of the SIS that it began marketing in 2004. Today 25 states, including Virginia, plus the District of Columbia use the SIS.

The above two images, Part E Scoring and Rating Key and the edited SIS Scoring Form & Profile, are taken from an AAIDD online case study of Melvin Thurber, for SIS training . The SIS gained traction in the disability world because of its paradigm-shifting approach to person-centered planning. No longer were a person's IQ and deficits in adaptive functioning the focus of an evaluation and planning. The SIS would focus on the individual's practical support needs in six Activities areas, and planning teams would use the SIS profile to individualize program planning rather than shoehorning people into generic programming options. Individuals would take advantage of the identified supports to build a life of their choosing in the community. By supports, they refer to a varied "array of resources and strategies, including individuals, money or tangible assets, assistive devices, or environments" that enable disabled people to live normal lives in regular community settings. Here are two overviews on the SIS tool from its maker, AAIDD: 2004 brochure and 2008 brochure .

Everyone participating in a SIS interview, except the interviewer, knows the target individual. The target individual is invited. The initial assessment is new to most of them. They assign a rating as if the person is fully engaged in an activity that most typically functioning adults would not need support for, and they themselves may not participate in. In Virginia, attendees are prohibited from recording, bringing notes, documents, or old SIS reports to the meeting. They rate each of 50+ activities from experience and from conjecture for: a) frequency; b) daily support time; and c) type of support. The scoring rules:

  1. This scale should be completed without regard to the services or supports currently provided or available.
  2. Scores should reflect the supports that would be necessary for this person to be successful in each activity.
  3. If an individual uses assistive technology, the person should be rated with said technology in place.
  4. Complete ALL items, even if the person is not currently performing a listed activity.

Ratings in the Medical and Behavioral support needs section are considered separately. The scores aren't represented in the final Support Needs Profile (i.e., activities A-F) below. SIS treats these medical/behavioral needs as overarching, that is they have a profound effect on any or all of the six target areas as indicated above. AAIDD/SIS encourages states to create Supplemental Medical and Behavioral Needs Questions , as Virginia has done . SIS considers a rating of 2 (Extensive Support) for any item in either medical or behavioral section a reason to complete the Supplemental Questions during the interview. Reviewers are encouraged to consider the: a) significance of the medical/behavior in regard to extra support, b) health and safety risks of not providing it; c) the occurrence (i.e., all or some environments) and and frequency; and, d) other needs.

The AAIDD scoring guidelines explain it this way: "The individual’s skill level, use of assistive technology, motivation, health, behavior, and safety/vulnerability must all be considered when determining ratings. People should be rated in accordance with their current status and functioning. For example, a person with low motivation, short attention span, low tolerance for learning, and limited cognitive ability will likely require high levels of supports to meet the standard of 'success' with many of the [Activity] items."

CRAAG has heard the following from families and providers who have participated in a SIS interview:

  • Report it's hard to rate activities if the person doesn't currently engage in the activity.
  • Wonder about the purpose of the SIS because when the scores come back no one explains what it all means, or even holds a meeting to develop a service plan using the SIS data.
  • Report that they didn't know what to expect in the SIS interview.
  • Report feeling "bullied" into minimizing the person's support needs (especially for medical and behavioral needs).
  • Report being treated like they're trying to game the system.
  • Call the interview intense and intimidating.
  • Know vaguely that the SIS has significant consequences for the next 3 years because the system uses the scores to decide what to pay service providers, but have no clue how it works.
  • Worry about holding on to the services they currently have because they personally know individuals who have lost services because of the SIS.