Last June, I attended the American Association of Intellectual Disabilities (AAIDD) Annual Conference, held in Atlanta, Georgia. Georgia is commonly referred to as the “Peach State.” Of course I made sure that I took in some southern cuisine that included a bowl of delicious peach cobbler. After dinner, I drove by the birth home of Dr. Martin Luther King, which is less than a half-mile from the King Center and the historic Ebenezer Baptist Church.
Now let’s get back to the AAIDD conference. AAIDD has been around since 1876 and represents the field of intellectual and developmental disabilities. Their publications and training resources have been used by doctors, lawyers, practitioners, psychiatrists, advocates, and leaders in the field. The primary goal of AAIDD is to enhance the capacity of professionals who work with individuals with intellectual and developmental disabilities and to promote the development of a society that fully includes individuals with intellectual and developmental disabilities (see AAIDD’s Principles).
The conference theme was entitled “The Meaning of Professional In An Era of Change.” Traditionally, professionals have been the primary voice in determining the needs of individuals with disabilities. Not surprisingly, this approach has often excluded individuals with disabilities from this conversation. There was a strong call throughout the conference to build better connections between service provider staff and individuals with intellectual/developmental disabilities. While there have been steps made in the direction of inclusion–there is still much work to be done.
The conference spoke about a fundamental shift in approach. This shift in essence focuses on doing more things with people with ID rather than for people with disabilities. Under this practice, service providers would ask individuals what they want or desire rather than making assumptions. This definitely gets to the essence of person-centered planning and requires much more involvement from families in these settings. There were a number of statements from conference participants about what it means to be a professional:
- “the need to be responsive to what communities look like today”
- “being savvy in a time of limited resources”
- “flexibility and creativity in navigating the changing complex of the world”
- “proactively shaping change instead of allowing change to shape us”
A panel session on Achieving Meaningful Community Inclusion discussed what true community inclusion looks like. Individuals with ID are often skating on thin ice due to their limited experiences and lack of exposure to different places. People with disabilities have a harder time forming relationships, getting jobs, and/or participating in community activities. Those of us without disabilities are often skating on “thick ice” due to a greater sense of belonging and the social roles that we serve in society. The session highlighted the need to create accessible communities that bring people with and without disabilities together. One panel member mentioned that professionalism is not always helpful in building a community. The new vision for professionals requires them to engage with individuals with ID at the community level. There was also some discussion about the term “person-centered planning” missing its origins by being too much about the service and not enough about the person.
A session on Attaining Workforce Stability and Positive Outcomes for People with IDD focused on raising the bar for Direct Support Professionals (DSPs) or front line staff that assist individuals with disabilities with daily activities. According to National Core Indicators Human Services Research Institute, the annual turnover rate for DSPs is 45%. Additionally, 15% of new hires are fired in the first year and 45% of all staff leave in six months. The average hourly wage for DSPs is $10.35-$11.11. The average age of DSPs is 42 years old. Not surprisingly, turnover is lower where DSPs feel valued. The National Frontline Supervisory Competency Set (NFSC) was developed by the University of Minnesota to reflect best practices and help guide the work of DSPs. Some of the competency areas within the NFSC include assessment, communication, and participant empowerment. In order to build a stable workforce, DSPs need to receive ongoing supervision and supports. The session placed an emphasis on frontline supervisors educating staff to enhance the quality of care.
A breakout session about the University of Delaware’s National Leadership Consortium on Developmental Disabilities spoke about society being stuck in time and tolerating the conditions for the ID/DD population. Basically, new opportunities for this population will require a different type of leadership that understands the complex needs of the ID/DD population and who are also active in supporting best practices and innovation. The presenters touched on where the field is going and increasing person-centeredness. Not surprising there is a shift away from congregate settings to community based settings.
In another session, presenters from the University of Kansas talked about the Supports Intensity Scale Adult (SIS-A) Annual Review Protocol. SIS-A is an assessment tool that identifies the support requirements of a person with ID. The social ecological understanding is that people with ID need extra supports to successfully participate in daily life activities. The primary purpose of the service delivery system is not to fix/cure/change people but to enhance opportunities for people to have a better quality of life. SIS-A is intended for person-centered planning and allows professionals to facilitate a conversation. Generally, this conversation lasts a minimum of two hours. SIS-A shifts the focus away from what a person with ID lacks to their needs.
Overall, this was an excellent conference. As I finally write this blog post (more than a year later), I often reflect back on this conference and use some of what I’ve learned in exploring/reviewing grant opportunities. As a society we often minimize the role and capability of individuals with intellectual disabilities. It’s quite easy to focus on one’s limitations. However, when you hone in so deeply on limitations; you overlook the strengths of that individual. Disability or no disability–we all have things that we do well and not so well. One of the things that resonated with me from the conference is that individuals with significant disabilities are eager to become part of the conversation. It is important to remember that the person with a disability does indeed know their self better than anyone else. So I keep thinking about how a cultural shift must occur in how we engage individuals with ID and realize the contribution that they offer to the broader community.