A new addition to the Supports Intensity Scale team!

Angela Rapp Kennedy recently joined the Supports Intensity Scale team as product manager, responsible for all projects related to SIS. Angela has over two decades of experience in developmental disability services, working both as a provider of services in supported living, early intervention, and employment, as well as managing programs for the states of Washington, Idaho, and Maryland. Most recently, Angela was Project Coordinator for the State Employment Leadership Network initiative with the National Association for State Directors of Developmental Disability Services.

AAIDD: You have been in the developmental disability (DD) field for over 20 years now, and you have heard about the Supports Intensity Scale in the DD circles before you took on this job. What is the general perception of SIS in the field?
Rapp-Kennedy: People are definitely talking about the Supports Intensity Scale. They are excited to finally have a valid and reliable way to determine supports people need to be successful, versus all the things a person can't do as with the typical assessment instruments in use. SIS is the first new major assessment instrument to come along in a long time.

AAIDD: What's the core value of SIS to the field?
Rapp-Kennedy: SIS is an assessment instrument that more closely embodies the values so important to the disability field that individuals with intellectual and developmental disabilities have talents, gifts, interests, and capacities like everyone else and simply need assistance to realize them fully. The SIS offers states and service providers a way to quantify and use clear information about what that support might be and what it might look like.

AAIDD: What motivated you to take on this job?
Rapp-Kennedy: It's actually quite ironic. I was never one who had much use for standardized assessments. I valued spending time with each individual and learning what "made them tick" and being creative in helping them explore what their interests might be and then building from there. After many years working in state DD agencies, dealing with ever growing waiting lists, learning more than I ever wanted to know about lawsuits and being involved with growing Medicaid waiver programs, it is an inescapable reality that service systems must have some reasonably objective and quantifiable way to determine and justify budget and time allocations for the individuals they serve. And just as importantly, they need to be able to show a commitment to person-centered planning in such a way that the system understands what individuals need to live successfully in the community; a way to show that the service system is providing quality services and supports as promised in the individual planning (and, sometimes budgeting) process. That is what I believe the Supports Intensity Scale can provide if implemented as envisioned by the authors. I hope to use my deep belief in what people with developmental disabilities can and should be supported to do, and my extensive work in what it means to run services and DD state agencies, to help systems and providers implement the Supports Intensity Scale as it was intended to be implemented. Because of all the possibilities SIS holds for individuals with disabilities and the systems that support them, I would hate for it to become yet one more piece of paper it took someone several hours to fill out that ends up in a file drawer or on a server, only plucked out at audit time. A unique attribute of SIS is that it can make the routine assessment process come alive with possibilities.

AAIDD: Can you elaborate on that thought, that is, how SIS makes the assessment process different?
Rapp-Kennedy: Sure. Often, assessments are completed because they are a system requirement but have little value in providing services and supports to an individual with developmental disabilities. In those cases, the assessment is completed and put in a file drawer or saved on a server to be looked at only during an audit confirming it was completed as required. It is not uncommon for an assessment to be completed by someone who has too much to do and just wants it to be finished, not seeing any value in it to the person they are supporting. The score is recorded on documents and follows a person, but adds no value to their life. In the case of adaptive assessments (which are the majority), they are used most often in eligibility determination, which is, of course, important to individuals getting access to services and important if there is a fair hearing issue but then serving only to fill space until the requirements dictate redoing the assessment. When used to drive service planning, often the items are simply "pre-populated" with last years' scores and everyone confirms once again all the skills the individual lacks. What does it matter to Joe that he can't write his name or tie his shoes. He's failed those items for the last ten years but he still wants to play basketball and cash his paycheck. Coming at it from the SIS angle, the question becomes: What do you want to do in your free time and what support do you need to do that? The resulting discussion unearths the fact that Joe needs good basketball shoes he doesn't have to tie. And that if he is to buy the shoes, he needs money, which means he probably needs a job and a way to access the money he earns without having to sign his name. The Supports Intensity Scale leads people to figure out how to help individuals with developmental disabilities be successful in the life they choose to live. SIS has the potential to actually add value to the individual and the system and that is exciting! The person doing the SIS interview is actually asking questions that pertain to the individual's life from a perspective that matters to the person and those supporting him/her?What do you need to be successful? The questions cover every aspect of life forcing the interviewer, respondents, and the individual, to perhaps think about areas they haven't explored before. If the SIS is used as a "kick off" or during the informational gathering stage of good person-centered planning, it can be the springboard from which people start to plan their lives, and from which agencies can start to plan their staffing and support schedules.

AAIDD: Even given these unique attributes of SIS, it must concern you that this Scale could also simply become yet one more requirement that is completed and tucked away in a file cabinet?
Rapp-Kennedy: Yes, it does. Much as we've seen when systems build in required, perfunctory person-centered planning documents, but never implement a system that values and supports the concept. People need to value the time it takes to complete a SIS. Certainly, across much of the country, workloads for people working in the DD service system can sometimes seems overwhelming. Can you really say that taking a couple of hours to help someone figure out what they need to be successful in life is excessive? If the answer is "yes" it is likely the SIS will be filled out perfunctorily and simply end up in a file cabinet. The answer is a definite "no" if it starts a dialogue that leads to a good plan and clear expectations for services and supports that can be acted upon together with the person to create a life of value. And it can then be used as a quality measurement tool to see how the supports and services are working. Buy-in from the top levels of state government and agency management as well as a commitment to training and support of the SIS assessment process will be crucial to its success and to its usefulness to the system, and most importantly to the individuals being supported by the system. More discussion and work around how SIS can tie into and complement good person-centered planning will be useful.

AAIDD: Talking about person-centered planning, you have worked as the community liaison for individuals with intellectual disability transitioning into communities in the state of Washington in the early 90s identifying needs, developing resources, facilitating PCP, the same things for which SIS is being used for right now. Would it have been helpful to then to have a tool such as SIS that is geared toward identifying community supports?
Rapp-Kennedy: One way it would have been helpful and can be today is to help individuals who may have lived in an institutional and/or congregate setting for much or all of their life, as a vehicle to start to see all the possibilities of a life in the community. The person with the disability, families, and support staff should be involved in this process. One problem for individuals with disabilities is often they have led a life with VERY few choices. When someone asks them what they want to do, where they want to live, what kind of job they want, they have no frame of reference. This might be a person for whom having control over when the lights are turned on and off or the ability to close their bedroom door at will is a huge excitement. The SIS provides a way to begin a conversation about each area of a person's life: both life-enhancing as well as basic health and safety issues. The SIS authors and trainers say over and over again the measure is, "What support is needed for the person to be successful." There is no conversation about if, can, should or will the person participate in each area of life fully, but simply what support needs to be provided to enable them to be successful. For people not involved in the developmental disability field, it may not seem like much but it is HUGE for a person with a disability!

AAIDD: It is clear from talking to you that you have a great amount of passion in your convictions. Where, if I may ask, did you get this and what led you to the field of developmental disability?
Rapp-Kennedy: I was set to become a doctor actually and driving home one day from college, it struck me all of a sudden that this was not what I wanted to really do. I changed majors, graduated with a degree in Special Education, and came across a job in early intervention in Seattle, and here I am. I feel blessed that my early years in this field were in the state of Washington, a forerunner in disability services then and now. I had opportunities to work with and learn from good people, visionary people, both in the service system as well as individuals with disabilities and their families. As to where did my passion come from, I believe it was inspired by spending time with children, adults, and families who had had been relegated to second class status, forced to be content with so little, but who had so much to offer. I don't care how nice people and systems try to make institutions or self- contained classrooms, we owe it to every person, and to society, to play a part in making a place for all citizens in the community.

Angela Rapp Kennedy can be reached at angela@aaidd.org.