MN LEND in the News

Improving Diagnostic Processes, My LEND Experience

2011-12 LEND Fellow: Lindsay Ohmart

Throughout the past year, I have had the opportunity to conduct a process improvement project looking at how to refine a Twin Cities clinic’s diagnostic process of neurodevelopmental disorders for children with behavioral and developmental concerns. A needs assessment was conducted and revealed the project site had a poorly designed system for evaluating and diagnosing children. After an extensive literature review, it was decided that the first step in improving the timeliness of the diagnostic process was to improve the coordination and process flow at the project site. The overall purpose of the process improvement project was to improve access to needed services for children with developmental delays and neurodevelopmental disorders.

Each step of the diagnostic process was reviewed with my community advisor from the clinic and changes were made to each step of the diagnostic process from the initial telephone call to the clinic from the concerned parents to the follow-up once a diagnosis had or had not been made. Data and surveys were collected prior to the start of the implementation process to measure if the newly implemented workflow process has improved timeliness and employee satisfaction of the process. The implementation of the materials is currently being conducted at the clinic site. The outcomes of this process improvement project have yet to be revealed.

Being a LEND fellow gave me the opportunity to observe the diagnostic process of neurodevelopmental disorders of multiple clinics throughout the Twin Cities. I was also given the opportunity to listen to families’ perspectives of the diagnostic experience. The LEND experience also gave me the insight of the importance of early diagnosis through guest lecturers, peers, and experiences within the community. Without being a LEND fellow, I would not have had the invaluable understanding of the diagnostic process of neurodevelopmental disorders.

AUCD Conference 2011: A Trainee’s Perspective

LEND Fellow: Renee Hepperlen

First, I would like to thank AUCD for the opportunity to attend the AUCD 2011 national conference on a trainee scholarship. As AUCD was celebrating its 40th year, this was an interesting year to attend. The conference was organized along a time-line with attention to historical perspectives, to current developments and to a consideration of what the future holds for individuals with a disability. Historical elements were found in a number of presentations from Monday’s plenary session where national as well as local self-advocates for policy change were recognized, as exemplified in the continuum from Ms. Eunice Kennedy Shriver to Mr. Cliff Poetz from Minnesota. Without either perspective, we would not be where we are today.

Presently, we are involved in discovery and the cross-cultural applications of findings to deliver quality services and advocate for policy changes. Presenters in this arena provided information about best practices for training people to identify concerns related to autism in young children, the implications that direct support training and mentoring has on individuals with disabilities who receive those services as well as advances in treatment options and services for people with Neurodevelopmental disorders. Also, AUCD welcomed over 80 trainees from around the county who will likely become tomorrow’s leaders.

Finally, the conference concluded with an opportunity to dream about the future. The themes identified encompassed increased inclusion and additional access for all people; development of social capital for people with disabilities; and a critical review of services and policies. From my personal perspective, it allowed me to consider additional perspectives that will help shape my dissertation and future work. Thank you again for this chance to learn. I greatly appreciated it.

AUCD Conference 2011: A Trainee’s Perspective

LEND Fellow: Jennifer Reinke

When I describe LEND to people in my field (Family Social Science), I usually say something like "I'm in the right place, doing the right thing, with the right people." My experiences at the AUCD conference brought this feeling of belonging to a much, much greater level. I truly do feel like I left Washington D.C. having made some real connections with other professionals and trainees. I felt welcomed when leaders in the field asked me where I am from, and what I am working on. The typical hierarchy in academia was immediately flattened and I felt like I was surrounded by people I could call colleagues. This was especially true when I asked one of the presenters if she had a few minutes to talk in greater detail about her work. Not only did she sit down and talk with me, but she invited me for a refreshment and introduced me to some of her colleagues that are working on similar projects. I asked for their insight regarding a situation I am experiencing with a local organization and, together, we brainstormed ways I might handle the situation, including who I might talk to, and what questions I could consider asking. Things like that just do not happen at the kinds of conferences I typically go to. Attending the Family Support SIG meeting was also a memorable experience for me. Being in a room full of people - parents, professionals, and trainees - all charged with the same mission and all working towards furthering efforts surrounding family support was really remarkable. Overall, this was a really rich experience and I am already looking forward to next year's conference.

LEND Fellow in China

LEND Fellow: Zoe Fung
Conference: 3rd China International Conference of Speech Therapy
Presentation Title: Sunrise Autism Foundation Website
Location: Qingdao, China
Date: July 2011

My trip to China was inspirational and eye-opening. I had an opportunity to visit Elim Autism School in Qingdao, China. Elim is a non-profit organization which serves children with autism. Elim is one of the few schools in China provides education for parents and children with autism using integrated and research-based approach. During the visit, I had a glimpse at the school environment, teaching methods, and the interaction between the students, parents, and the teachers. Through communicating with the people at the school, I have learned that the special education system in China is quite different than the United States. The parents are the leading advocates for their children with special needs. Many of the organizations like Elim are founded by parents. I was amazed and impressed by the accomplishment of the founder who is a parent of a child with autism. In the past eleven years she has put her heart and soul into the school. The school started with a few families and today serves over 300 students, with many more on the waiting list. The school’s impact can be witnessed by the achievements of the school and in the positive changes of many people’s lives. Currently, there are no services for children with special needs in public school in China. All teachers hold regular teaching licenses because special education certification does not exist. There is a great need of school like Elim to provide basic and quality services to Chinese children and families affected by Autism. I am glad that I had this opportunity and firsthand experience at Elim to learn about autism from a different cultural perspective.

The 3rd China International Conference of Speech Therapy was another highlight of my trip. I had an opportunity to learn about the most recent research on neurogenic communication disorders and related diseases. I was also able to network with other educators and practitioners in the healthcare field. It was my honor representing the team to present the Sunrise Foundation Autism website at the conference. This website was developed specifically for children and parents in China. The response from the audience was excellent; many people have expressed that they are interested in learning more about the website and collaborating with us. Attending this conference was helpful for our continued website development and connection to the Chinese population. This allowed us to better tailor our website to meet the needs of families and improve the overall quality of the website. I would like to express my gratitude to the LEND programs for providing financial support and education, and to all the personnel who have helped in the process to make this trip happen. Without your support, I would not have had this remarkable experience in China or the opportunity to learn about NDD in the Chinese population.

- Dak Lam (Zoe) Fung, OT, 2010-11 LEND Graduate

LEND at the 2011 AAIDD Conference

In June, St. Paul, Minnesota was the host of 135th annual meeting of the American Association on Intellectual and Developmental Disabilities-Inclusive Communities: Pathways to Realizing the Vision. This event allowed participants to ponder and explore the notion of inclusion. Policy makers, researchers, students, teachers, funders, and advocates from around the US and the world gathered to participate in this innovative conference focused on creating inclusive communities.

The MN LEND program was well represented at this event. Students, faculty, and staff showcased the research and projects related to inclusion.

LEND Fellows Participating in the AAIDD Conference:

• Adele Dimian-Presentation: The Effectiveness of Using and Ipad or Itouch to enhance communication ability for individuals with developmental disabilities.
• Dr. Tim Moore-Poster: Case studies on person and family centered positive behavior support and the capacity for self determination
• Dr. Matt Bogenshutz-Poster: Twin Cities Zambia Disability Connection: Creating community to support inclusion of people with disabilities.
• Dr. Jen Hall Lande-Presentation: Characteristics of adults with Autism Spectrum Disorders: Results of a national study.
• Rachel Sarto-Poster: Inclusion practices and attitudes of direct support professionals seeking competency based credentials
• Kristin Hamre-Poster: Twin Cities Zambia Disability Connection: Creating community to support inclusion of people with disabilities.
• Shirley Qian-Presentation: The Effectiveness of Using and Ipad or Itouch to enhance communication ability for individuals with developmental disabilities.
• Annie Johnson-Presentation: Characteristics of adults with Autism Spectrum Disorders: Results of a national study.
• Stephany Mottet-AAIDD Volunteer

Faculty and Staff Participants

• Dr. Amy Hewitt- Characteristics of adults with Autism Spectrum Disorders: Results of a national study, conference committee chair
• Dr. Joe Reichle-- Presentation: The Effectiveness of Using and Ipad or Itouch to enhance communication ability for individuals with developmental disabilities.
• Dr. Frank Symons-Poster: Parent reported pain in Rhett Syndrome
• Dr. Raymond Tervo- Poster: Parent reported pain in Rhett Syndrome
• Beth Fondell- Conference committee volunteer
• Kelly Nye-Lengerman- Conference committee volunteer

LEND Trainee, Rachael Sarto, Attends Allies in Self Advocacy Summit

Members of the Minnesota State Team (Rachael Sarto - far right)

MN LEND Fellows visit Washington DC

"Learning from all of the different lenses has shown me that there usually is no right answer, but when we communicate our goals and work together we can come closer to that "right answer."

Erika Klang, 2010-11 MN LEND Fellow, Occupational Therapy

"I can appreciate, given my experience in LEND, how issues and policy related to housing and employment, health care, and education are not separate, but connected and interdependent."

Ellie Wilson, 2010-11 MN LEND Fellow, Public Health

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MN LEND Fellows meet with policy makers and professionals, including Senator Al Franken, at AUCD's Disability Policy Seminar in Washington DC (Erika Klang & Ellie Wilson front row).