In a few weeks, AAMR will launch SIS Online, the world’s first web-based scoring and reporting system dedicated uniquely to assessing support needs of persons with mental retardation and developmental disabilities. John Ashbaugh, State Policy Consultant to AAMR and Vice President of Danic Technology Inc., talks to AAMR about what makes the Supports Intensity Scale (SIS) and the new enterprise system unique.

AAMR: You have been talking to states and agencies about SIS over the past year. What in your opinion distinguishes SIS from existing assessment tools?
Ashbaugh: SIS requires the direct assessment of needs as opposed to having the needs statistically inferred based on historical correlations of need and adaptive maladaptive behavior scores. The support needs decision is made on the front lines rather than back room.

AAMR: Can you elaborate on that last thought? You pointed out in a recent interview that SIS avoids the error inherent in inferring support needs indirectly through statistical measurements.
Ashbaugh: The SIS requires the Interviewer and respondents to make the assessment of support needs directly for or with the individual. The Inventory for Client and Agency Planning (ICAP), Developmental Disabilities Profile (DDP), and other traditional instruments are used to assess adaptive and maladaptive behaviors. The assessment of support needs is subsequently done through statistical inference. The inferred needs are derived by researchers using a combination of expert judgment and the analysis of historical data to identify statistically significant correlations between levels of adaptive and problem behaviors (and other limiting conditions) and levels of service and support use. Used supports are assumed to be needed supports. The correlations are then used to define a continuum of composite scores each with a corresponding level of need for support and supervision. The composite scores are typically combined into a manageable number of groups for purposes of level-of-care determination, resource allocation and payment. An individual’s support needs are then determined by the score set (group) in which his or her scores happen to fall.

AAMR: And what is inconsistent with that picture?
Ashbaugh: There are two critical errors introduced with the statistical approach to needs assessment used by the ICAP. The first lies in treating “used” supports as “needed” supports. Used supports are a function of supply, which varies from area to area owing as much if not more to resource availability and program philosophy as to “need.” The second error is known as the ecological fallacy where the researcher makes an inference about an individual based on aggregate data for a group when in fact the inference—in this case, type(s) and level(s) of needed supports—is unlikely to make sense for every member of the group.

AAMR: So what you are saying is that SIS reports directly on the unique needs of each individual such that there is no second guessing required.
Ashbaugh: Yes.

AAMR: You also said recently, “SIS is enriching the planning process.” Could you elaborate?
Ashbaugh: Yes. Early feedback on the SIS is indeed that SIS is enriching the planning process by sparking discussion and ideas on how the individual might grow and flourish in ways not before considered. At the same time, SIS is taking longer than expected to complete. What isn’t yet known is whether, the extra time requirement will be ongoing, will evaporate with the learning curve, or something in between.

AAMR: Talking about the learning curve, AAMR recently launched the first SIS Train the Trainer seminar. AAMR will have a cadre of professional trainers available to educate end users of SIS. What role do you see for training in the acceptance of SIS?
Ashbaugh: The emphasis currently in the DD field is on training and recognition, and that professional degrees do not necessarily distinguish the best support workers. It’s good to see that AAMR is following the same path with the SIS. Good training will be essential to the success of SIS, training that deals as much with actively engaging individuals, families and significant others in supports planning as with the completion and scoring of the SIS.

AAMR: Many professionals in the developmental disability arena are excited about using SIS as a potential solution to distributing resources in a manner that meets the needs of that person in the amount and intensity required. Can you comment on that?
Ashbaugh: You’re right. A number of states have, or are now developing individual budget amounts pegged to individual characteristics and situational factors that have been shown to be statistically significant predictors of costs. Central to these budget models is the association of support needs and related costs with individual characteristics. To-date, the ICAP has been the source of choice for the individual characteristics given its wide use and the consequent availability of ICAP data. However, as the SIS gauges support needs directly, rather than indirectly (via association with individual characteristics), it should prove a superior tool for purposes of individual budget determination. Hopefully, we will be able to demonstrate this before long. We’re expecting final approval on our first state SIS-based individual budgeting project within the week.

AAMR: So it looks like there is considerable interest in SIS the state circle. However, things are slow in moving. Why?
Ashbaugh: States use needs assessment instruments for eligibility determination, level of
care determination, system assessments and resource allocation/payment. States typically make heavy investments in system design, development and training particularly in the case of resource allocation / payment systems. States must also expend considerable time and political capital getting these systems adopted. It is always difficult to institute new systems that affect the bottom lines of providers, consumers/families and State.

AAMR: As you know, we will launch SIS Online, the world’s first entirely web-based scoring and reporting system dedicated to gauging support needs of people with MR/DD. The idea of creating a web-based application accessible by all was essentially yours. What prompted you to suggest that AAMR move in this direction?
Ashbaugh: I work for Danic Technology, Inc. Danic provides database management systems to human service agencies in North America, principally to developmental disabilities agencies in the U.S. Over the years, Danic has moved:

from Personal Computer (PC) systems where software, data and processing all rest in a single PC or group of locally networked PC’s

to Client/Server systems where software, data and processing are distributed among office PCs (clients) and servers (central computers), and most recently

to web-based systems. These systems allow any authorized user with an Internet browser to access the software, data and processing power of servers over the Internet. Data can be shared across different software applications and operating systems.

Borrowing from Danic’s experience, I could see that the web-based application of SIS made sense. It would address several problems that have historically limited the application and use of individual assessments, chief among which is:

Access. The PC-based scoring software that typically comes with paper assessment instruments is accessible only to those who purchase and load the software onto their PCs. Moreover, in order to be used by state DD authorities, the assessments and/or summary scores must be manually reentered into the state’s database. By establishing a SIS database on-line, any authorized user can score the SIS and access the results. Moreover, the entries or summary scores need be entered only once into the SIS on-line system. Where states have web-based systems, the entries and analyses can be done through their systems. Where they don’t, the SIS On-line can effectively serve as their database. Because the SIS On-Line can accept other data as well, it can serve as quite an expansive, low-cost, ready-built alternative to states developing their own web-based consumer information systems.

AAMR: And you commented in a recent article that state information systems, like the
SIS Online system, are increasingly web-based applications.
Ashbaugh: Yes, they [web-based applications] permit wider user access—anyone with an Internet browser can access them—at a lower cost (over the Internet) and can more easily communicate one with another.

AAMR: Ultimately, the aim of AAMR, like all other disability groups and professionals is to enhance the quality of life of people with developmental disabilities. How do you see SIS contributing to these efforts?
Ashbaugh: Historically, the exclusive reliance on traditional assessment instruments with their inherent focus on individual deficiencies, has helped lead “case managers” to approach clients and families more as doctor than guidance counselor. More time is devoted to the careful documenting of individual skill, behavioral and physical deficits than to the understanding of the individual’s life, interests and aptitudes. Hopefully, introducing the SIS into the mix will help shift the focus. And I will repeat what I said before, good training will be key, training that deals as much with actively engaging individuals, families and significant others in supports planning as with the completion and scoring of the SIS.

John Ashbaugh can be contacted at jashbaugh@danic.com

Founded in 1876, the mission of AAMR is to promote progressive policies, sound research, effective practices, and universal human rights for people with intellectual disabilities.