1. Supports Intensity Scale® North Dakota Presentation May 2011 Ravita Maharaj, PhD, Director of SIS Program, AAIDD Karen Hoffman, AAIDD Supports Intensity Scale Trainer

2. 2 What is The Supports Intensity Scale? A standardized assessment designed to measure the pattern and intensity of supports an adult with intellectual disabilities requires to be successful in community settings. Where did it come from? Developed by AAIDD over 5 year period from 1998 to 2003 in response to changes in how society views and relates to people with disabilities. Released in 2004.

3. Why was the SIS® Developed? AAIDD commissioned an ad hoc committee: “The purpose of the Committee is to integrate current theoretical and applied literature on supports assessment; to develop a model for supports intensity assessment that can be used for multiple purposes, including clinical assessment, service delivery, and funding decisions; and to pursue a joint venture development of a supports intensity assessment system.” - May, 1998

4. 4 How is the SIS Used? Individual Planning: Measures needs in a way that can be useful when planning supports. Outcome Measurement: Measures changes in support needs over time Training: Used to foster system values of inclusion, self-direction, and personal choice. System Planning/Resource Allocation: Quantifies the individual’s support needs relative to others with the same disabilities nationally, within a state or in a program. This aspect has been found helpful in both system planning and resource allocation.

5. 5 SIS in North America NOW USING: 16 Alberta, Ontario, Oregon, Colorado, Pennsylvania, Missouri, Louisiana, Washington, Virginia, Georgia, West Virginia, Utah, Maine, New Hampshire, Oklahoma, Rhode Island, North Carolina EARLY PHASES 5 Hawaii, Iowa, Maryland, Ohio, Tennessee (MANY OTHERS CONSIDERING…)

6. 6 SIS Worldwide: 13 Languages, 19 Nations Australia, Belgium, Canada, Catalonia, Croatia, Czech Republic, Greece, Iceland, Ireland, Israel, Italy, Japan, Korea, Netherlands, Portugal, Spain, Taiwan, U.S.

7. SHIFTING PARADIGMS: EXPLORING ADULT LIFE An examination of the beliefs and practices about adult life for people with developmental disabilities Do adults with disabilities share in the same aspirations and expectations as non disabled adults in your community? What does it mean to be a successful adult in your community?

8. 88 What SIS Measures Standard of a Typical Adult: Expectations Responsibilities Involvement in the activity Individual Being Assessed: Expectations Responsibilities Involvement in the activity SIS measures the difference 1.Type of Support 2.Frequency of Support 3.Daily Support Time

9. 9 SIS Administration SIS is administered via a semi-structured interview. Ratings should reflect the supports that would be necessary for the person to be successful in each activity. All questions are set in fully integrated settings not supported/sheltered settings Needs at least 2 respondents who know the individual well and can provide the information needed to reach a score

10. 10 Support Needs Ratings  Administration: Interview the person and others who know the person. Requires solid interviewing skills  Measures general support needs of an individual producing a number of scores  Includes basic support need areas like:  I. Home Living, Community Living, Lifelong Learning, Employment, Health and Safety, and Social  II. Protection and Advocacy,  Identifies Exceptional Medical and Behavioral challenges

11. 11 How Do We Measure Support Needs?” Frequency Daily Support Time Type of Support Support Needs

12. +Understanding Intent of SIS item + Balancing out the pieces that make up the SIS item + Synthesizing all information gathered + Professional Training + Professional Experience +Using critical thinking skills to apply all of the above to the support needs of the individual =Clinical Judgment 12 Role of the Interviewer

13. 13 SIS Training 1.Initial Training 2.How we “discover” trainers 3.Inter-Rater Reliability Testing 4.Coaching/Observation/Feedback 5.Quality Assurance

14. - The SIS measures the supports need for the person to be a fully participating member of the community. This common standard enables us to compare. Concerns We’ve Heard 1. The SIS is hypothetical, asking questions about things the person will never do

15. 15 Concerns We’ve Heard - The SIS is not easy to administer. It requires knowledge and skill, and learning to be an interviewer takes time and practice. Also, AAIDD trainers have gotten better over time in the process and tools we use. The IRR process enables us to identify places where there are inconsistencies that need to be addressed. 2.The SIS is subjective - early assessments were done with different interpretations.

16. 16 Concerns We’ve Heard - The SIS takes a good 2 hours on average, but it varies based on the number of responders and the amount of agreement there is on the SIS ratings. In addition, our trainers often must spend time talking about the values that are incorporated into the assessment. To get accurate ratings, it is often important to talk through scenarios with the group. 3.The SIS takes too long

17. 17 Concerns We’ve Heard - The concepts used in the SIS are often new for people, and require some explanation by the interviewer to make sure everyone understands. 4. The SIS is worded in language that is difficult for some individuals to understand.

18. 18 Concerns We’ve Heard - It is not uncommon for the SIS to spark discussions of what the person wants, but does not replace the person-centered planning process that must occur in order for the individual and team to decide what should actually be done. 5.The SIS does not include what the person wants out of life.

19. 19 Concerns We’ve Heard - Some people have needs that are not captured adequately with the SIS, especially in the areas of behavior and medical need. When the SIS is used for resource allocation, these individuals must have their needs evaluated using an exceptional need process. 6.This person has needs that the SIS didn’t capture.

20. 20 Concerns We’ve Heard - Many other tools that attempt to measure what the SIS does are deficit-based, as discussed earlier. Other tools have not been tested for reliability and validity. 7.There are other tools that work better.

21. 21 Concerns We’ve Heard - As shown in the diagram on the next page, the SIS does not replace the person centered decision-making process where decisions about supports are made. 8.The SIS bypasses the concept of decisions being made by the team of supporters, and instead uses a single decision-maker – the SIS interviewer.

22. 22 Person Centered Planning Identify desired life goals/experiences/choices/ person center tools SIS Identifies/Measure support needs Planning for Individuals Other Assessments HRST, Behavior Individual Plan Natural and Funded Resources

23. 23 Why SIS Makes Sense 1.Normed with over 1,300 culturally diverse people with intellectual disabilities, ages 16-72, in 33 states and 2 Canadian Provinces. 2.SIS is not an adaptive behavioral scale. Assessment tools of the past focused on skill deficits - what the person can’t do. The SIS is Strength Based. SIS reflects a new way of thinking about assessment, focusing on the support needs, not deficits. 3.The Reliability and Validity of the SIS has been repeatedly demonstrated by research published in peer-reviewed journals. 4.The SIS is consistent with the values of community inclusion, self direction, individual choice/control, and person-centered services. 5.It works. The ability of the SIS to measure, with precision, the intensity of support needs for a given person relative to others with similar disabilities has been repeatedly verified over time.

24. 24 rmaharaj@aaidd.org kathy12002@msn.com www.aaidd.org www.siswebsite.org Questions?