Supporting people in community settings is
recognized as the new way of thinking in the disabilities field. The American Association on Intellectual and Developmental Disabilities (AAIDD) has been developing tools and informational materials to advance this paradigm.
The Supports Intensity Scale (SIS), is an assessment tool developed by AAIDD and published in 2004. The SIS measures an individual’s support needs in personal, work-related, and social activities in order to identify and describe the types and intensity of the supports the person requires.
Approximately 23 States, including the RI State Division of Developmental
Disabilities (DDD), are currently using the SIS to assess the support needs of new individuals determined eligible for services and individuals currently receiving services.
The assessment is done during an interview with the individual and the people who know him/her well. Since 2011, RI has used the SIS assessment to determine the support needs for individuals receiving developmental disability services to live a successful and independent life, as possible. The SIS was chosen to replace an assessment used by DDD called the “Personal Capacities Inventory”, which some people thought was too subjective. The SIS was utilized by many other states and thought to be a more reliable instrument for assessment.
What Is the SIS-A?
The SIS-A is a newer version of the SIS with some restructured and additional questions in the areas of behavioral and medical/health care needs. RI DDD started using the SIS-A this month. There have been numerous complaints by providers, advocates and families that the original SIS was not capturing a true picture of a person’s medical and behavioral needs.
What Does the SIS Measure?
The SIS-A measures support requirements in 57 life activities and 28 behavioral and medical areas. The assessment is done through an interview with the consumer, and those who know the person well.
SIS-A measures support needs in the areas of:
- home living,
- community living,
- lifelong learning,
- health and safety,
- social activities, and
- protection and advocacy.
The Scale ranks each activity according to frequency (none, at least once a month, etc.), amount (none, less than 30 minutes, etc.), and type of support (monitoring, verbal gesturing, etc.).
What are Support Needs?
Support needs are the pattern and intensity of supports necessary for a person to successfully participate in activities linked with normative human functioning.The supports approach recognizes that individual needs change over time, and that supports must change as well. They must be developed and delivered in age-appropriate settings, with the understanding that, regardless of intellectual abilities or limitations, people should have the opportunity engage in activities and life experiences just like any other person.
“SUPPORTS” means the assistance and level of intensity a person needs to do something successfully… things needed to have a good life including friends/relationships, choices, home, employment or meaningful day activities and community activities. The SIS measures support needs to find out:
- WHAT TYPE of support is needed
- HOW OFTEN support is needed
- HOW MUCH support is needed
“SUCCESS” means a level of performance, involvement, and participation in an activity that is comparable to that of typical adults without disabilities.
Statewide Informational Meeting
In addition to complaints regarding the questions within the original SIS format families, advocates and providers have had ongoing concerns about the interviewing process conducted by staff from DDD in terms of how questions have been asked and scored by DDD staff Interviewers. Some individuals with disabilities have been tested more than once with the SIS and have had very different results ultimately changing their Tier Authorization to a lower Funding Level.
Many family members, advocates and providers have described the SIS as a tool to cut funding. They have said DDD staff interviewers administering the questionnaire have been argumentative regarding how to answer questions on the SIS, show little respect for families, and sometimes appear determined to lower assessment scores.
Heather Mincey, DDD Administrator, has stated the State is working on addressing these concerns and has encouraged parents to file Appeals if they believe the SIS results for their family members are inaccurate – or if they have problems with a shortage of funds.
Appeals are ongoing and very time-consuming, especially for parents who have full time jobs, and for Plan Writers and staff from provider agencies who have to complete the required paperwork for the Appeal.
Mincey referred any further questions about the SIS to Donna Standish, State DDD SIS Supervisor, at 401-462-2628 or at Donna.Standish@bhddh.ri.gov
On November 17, 2016 BHDDH hosted a statewide informational meeting with an AAIDD representative to help individuals and families prepare for the change to the SIS-A and to answer questions. Complaints about the SIS that have continuously surfaced at various BHDDH public sessions throughout the year indicate there a lack of public confidence in the SIS. A number of family members expressed their serious concerns about their personal experiences with SIS interviews and results.
Several suggestions and safeguards were mentioned to help family members and providers feel more confident in the SIS process.