Linda Rolfe, Director of Washington’s Division of Developmental Disabilities  talks to AAIDD

AAIDD: Why did Washington adopt the Supports Intensity Scale (SIS) over other available planning tools for people with intellectual disabilities? What did the selection process involve?

Rolfe:Based on several performance audits of Washington State’s Division of Developmental Disabilities (DDD) in 2003, the legislature directed us to develop an assessment process that is consistently applied to all clients with developmental disabilities across the state. Further, we were advised that clients must be assessed before a determination of service need is made, and that the process should use existing computer-based assessment tools either in use or under development in the Department of Social and Health Services, of which DDD is a part. The Centers for Medicare and Medicaid Services (CMS) also advised Washington that any assessment tool that was built had to measure the unique support needs of people with developmental disabilities. Further, Washington State’s legislature also directed DSHS make recommendations for the development of a standardized rate structure for DDD certified residential programs. It was decided early on that the new assessment process would be a major part of the new standardized rate structure.

The decision to then use the Supports Intensity Scale was influenced by four primary factors: (1) The SIS was developed specifically to measure the support needs of people with developmental disabilities and therefore addresses CMS’ expectation; (2) The SIS focuses on measuring the support needs of clients, which is consistent with the existing values and direction of the state’s DDD service system; (3) The SIS is validated and has acceptable inter-rated reliability, and (4) The American Association on Intellectual and Developmental Disabilities (AAIDD), publisher of SIS, was willing to work with our existing CARE system. CARE is a computer-based tool to measure client needs and allocate resources for Medicaid personal care services to over 40,000 clients who are either elders or people with physical and/or developmental disabilities.

AAIDD: You have spent considerable time and resources implementing the new DDD assessment system, of which SIS is a major part. What are some of the lessons learned that you can share with other states considering adopting SIS for people with intellectual disabilities?

Rolfe: Administering the Supports Intensity Scale on a trial basis to several hundred clients gave us an opportunity to see how SIS works before implementation. It was important to know how it is received by clients, families, providers, and state staff. Plus, we needed to know the potential of SIS for rate setting purposes.

If a state is considering using the Supports Intensity Scale to set service rates, particularly residential rates, additional considerations may be needed, including information about a person’s night-time support needs. Other areas to consider include using SIS data to define direct care supervision costs; a measure for epilepsy in the SIS Medical subscale; and additional measures for clients exhibiting serious behavior issues.

The Supports Intensity Scale may be used for a variety of purposes and levels of complexity. Our needs appear to be somewhat unique. Another state would need to know how and why we are using SIS before determining whether our use is relevant to them. That said, to a state considering use of SIS, I would advise them to talk to several other states that are using SIS; and talk with consultants (and AAIDD members) like John Ashbaugh, Gary Smith and Jon Fortune. We found it very useful to train local assessors and administer the Supports Intensity Scale to a sample of clients. We would also advise arranging for providers, families and constituents to review and become familiar with SIS and how the state plans to use the data.

AAIDD: From what we hear, families and providers in Washington State understand the move toward the Supports Intensity Scale and support it. What steps did you take in explaining SIS to different stakeholders to promote support for the new assessment system?

Rolfe: An assessment project advisory group and a residential rate study workgroup were established early in the process. Both groups included key members that represented the major constituent organizations in the state. Much effort was spent initially with these groups to assist them to fully explore and understand the components of assessment processes for people with developmental disabilities. Once they understood what was needed, these stakeholder groups agreed that the Supports Intensity Scale is the best tool available that could provide the required assessment data for measuring participants’ needs and for development of service rate methodologies.

AAIDD: How, in your opinion, does the Supports Intensity Scale most benefit a person with an intellectual disability?

Rolfe: The SIS is an automated assessment that reinforces what supports a person with developmental disabilities needs to be competent. The SIS also reinforces the fact that people with disabilities are competent and able to contribute to their communities.

AAIDD: What would you tell a family member who is wondering how the move toward SIS will affect services and resources to a person with a disability?

Rolfe: We tell families that our division has a great deal of information about the needs of individuals with developmental disabilities. However, much of the information and data we have is not accessible to policy makers and decision makers. We do not have a reliable way of telling the story of people with developmental disabilities because we have no efficient way to gain access to the evidence of their overall support needs. An automated assessment system provides access to this information and helps tell the story.

For people with developmental disabilities, any assessment system that is designed to describe their needs must approach it from the perspective of what support the person needs: (1) in order to be a contributing member of her/his community; (2) to be competent in any given activity; and (3) to be a contributing family member or friend. The SIS is that kind of assessment system and therefore works well for people with developmental disabilities.

AAIDD: How has working with AAIDD been? What are the other ways in which AAIDD can support states considering adopting SIS?

Rolfe: We have had a very positive experience working with AAIDD staff, the SIS authors, and the AAIDD contractors. We are extremely appreciative that AAIDD has allowed Washington State to work within our application system. We are looking forward to the completion of the upcoming children’s version of SIS, which will greatly aid our need to measure children’s needs in a common manner across the age-range spectrum of our caseload. It will be important that AAIDD provide regular opportunities for participating and other states to come together with AAIDD officials to discuss issues and needed future plans and direction of the SIS. The planned sessions involving states at this year’s AAIDD annual conference in Atlanta should be helpful.

To learn more about Washington’s DDD project, click here. To send a note to Ms. Rolfe or for an interview, email books@aaidd.org.