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Leadership Education in Neurodevelopmental and Related Disabilities

MN LEND in the News

MAI Inaugural “Connecting the Pieces: A Day with the Experts” Event

Autism Conference Crowd Close-up

Minnesota Autism Initiative (MAI)* held its inaugural conference, on Friday, March 27, 2015, titled “Connecting the Pieces: A Day with the Experts” at the Wilf Family Center Auditorium at the University of Minnesota Masonic Children’s Hospital.

MN LEND was a co-sponsor and partial funder for the successful day-long event, with close to 200 university, community, policy stakeholders, and family members in attendance.

Speakers and topics included:

Autism Conference Audience
Suma Jacob
Suma Jacob, M.D., Ph.D., Associate Professor, Department of Psychiatry at the University of Minnesota: “Translational and Transdisciplinary Autism Spectrum Disorder Research at the University of Minnesota”

 

Amy Hewitt
Amy Hewitt, Ph.D., Director of the Research and Training Center on Community Living at the University of Minnesota, Institute on Community Integration and the Training Director for the MN LEND and UCEDD programs: “Prevalence of ASD in Minnesota”

 

Autism Conference Audience
Sheri Stronach
Sheri Stronach, Ph.D., CCC-SLP, Assistant Professor of Speech-Language-Hearing Sciences at the University of Minnesota: “Looking Toward the Future of Early ASD Identification: Research, Training, and Evidence-Based Practices”

 

Anne Harrington
Anne Harrington, State Autism Planning Director MN Department of Human Services: “It Takes a Village: A Collaborative Journey in Developing the Early Intensive Developmental and Behavioral Intervention Benefit for Individuals with ASD and their Families”

 

Dr. Suma Jacobs presenting at Autism Conference

These speakers were followed with an informal networking and poster session, where former and current MN LEND Fellows were among the presenters sharing their research.

Special thanks to Dr. Amy Esler, Dr. Suma Jacob, and Dr. Jed Elison for coordinating the MAI event.

*Minnesota Autism Initiative (MAI) is a University of Minnesota interdisciplinary group of doctors, policy stakeholders, researchers, and graduate students who are committed to improving access to evidence-based early intervention, quality health care, and integrated care delivery systems for the benefit of all children with autism and related neurodevelopmental disabilities and their families.

MN LEND Fellows showcase their work at Gatlinburg Conference in Chicago

Dr. Breanne Byiers (3rd from left)
Theodore Tjossem Postdoctoral Award recipient, Dr. Breanne Byiers (3rd from left)

The Gatlinburg Conference continues its tradition as one of the premier conferences in the United States for behavioral scientists conducting research in intellectual and related developmental disabilities. Four MN LEND Fellows attended this event and three shared their current research activities. Their work showcases the diversity of research around the well-being of children, adolescents, and families affected by neurodevelopmental disabilities all of which are of critical importance to LEND programs.

MN LEND Post Doctoral Fellow, Dr. Breanne Byiers, was the recipient of the Theodore Tjossem Postdoctoral Award presented at the opening reception. The award is named after Theodore D. Tjossem, who was the chief of the Mental Retardation and Developmental Disabilities Research Centers branch at the National Institute of Child Health and Human Development, under the National Institutes of Health (NIH), from 1966 until his retirement in 1987. Dr. Byiers was also a presenter at the conference. Her session was titled: "Aggressive and Self-Injurious Behaviors in the Behavioral Phenotypes of MECP2-Related Syndromes."

Danneka Miller
MN LEND Fellow and Speech Language Hearing Sciences Student, Danneka Miller
MN LEND Post Doctoral Fellow from Pediatric Neuropsychology, Dr. Rebakah Hudock, presented two posters: 1) Identifying Current and Needed Transition Services for Students with ASD , and 2) Parenting Stress in Mothers of Children At-Risk for Developmental Disabilities. MN LEND Pre Doctoral Fellow from Speech Language Hearing Sciences, Danneka Miller presented a poster with LEND Core Faculty, Dr. Liza Finestack, titled: "An Evaluation of Grammatical Language Interventions for Children with Autism Spectrum Disorders."

 

MN LEND Fellows participate in CDC Autism prevalence study

Minneapolis Somali Autism Spectrum Disorder Prevalence Project: Community Report 2013
The Minneapolis Somali Autism Spectrum Disorder Prevalence Project was developed to answer the question, “Is there a higher prevalence of ASD in Somali children who live in Minneapolis versus non-Somali children?” The project looked at information on children who were between the ages of 7 to 9 in 2010 who had at least one parent living in Minneapolis. MN LEND Fellows worked in conjunction with the Somali community to educate and promote the ongoing work of this study. The project was introduced at community meetings, mosques, Somali run television and radio shows, Somali newspapers, and websites, as well as through informal community gatherings.

Some of the key findings from the study include: Somali and White children in Minneapolis were about equally likely to be identified with autism spectrum disorder. Somali and White children were more likely to be identified with autism spectrum disorder than Black and Hispanic children. Somali children with autism spectrum disorder were more likely to also have intellectual disability than children with autism spectrum disorder in all other racial and ethnic groups in Minneapolis. Read the full community report at: http://rtc.umn.edu/autism/doc/Autism_report.pdf

A significant portion of this project included community advocacy, education, outreach, and product development. MN LEND Fellows from multiple cohorts worked in conjunction with staff from the Institute on Community Integration to develop high quality and culturally relevant materials to support the findings from this study. MN LEND Fellows continue to play a critical role in providing information to the Somali community about the study, its findings, and resources.

MN LEND Fellows involved in the study included:
  • Jen Hall-Lande (2009-10 LEND Fellow)
  • Kristin Hamre (2009-10 LEND Fellow)
  • Nasro Mohamed (2009-10 LEND Fellow)
  • Istaahill Maalin (2011-12 LEND Fellow)
  • Quannah Parker-McGowan (2011-12 LEND Fellow)
  • Ladan Yusef (2012-13 LEND Fellow)
  • Salma Hussein (2012-13 LEND Fellow)
  • Jamal Abokar (2012-13 LEND Fellow)
  • Khadija Sheikh (2013-14 LEND Fellow)

To date, this is the largest project to look at the number and characteristics of Somali children with ASD in any U.S. community. To read more about this project or obtain resource material please visit http://rtc.umn.edu/autism/.

The Affordable Care Act: How Will it Work and How Will it Affect MCH Populations?

The Affordable Care Act:  How Will it Work and How Will it Affect MCH Populations?
The MN LEND program is one of six programs funded by the Maternal and Child Health Bureau (MCHB) at the University of Minnesota. Other MCHB programs on campus are actively engaged in promoting the health and well being accorss the lifespan. Recently the School of Public Health published: The Affordable Care Act: How Will it Work and How Will it Affect MCH Populations?

What are the goals of the Affordable Care Act (ACA)? What are the primary mechanisms through which the ACA will meet its goals? What is the potential impact of the ACA on women, children, adolescents, and immigrant families? The HRSA-funded Center for Leadership Education in Maternal and Child Public Health at the University of Minnesota just released a 36-page publication that addresses these questions. To read it, go to: http://www.epi.umn.edu/mch/wp-content/uploads/2012/05/HG_Fall20132.pdf

MN LEND participates in Regional Disparities in the Identification of ASD: Looking at Race, Ethnicity, Gender and Age

LEND Fellow and Faculty at GLLC Conference
Bahjo Mahamud, Amy Hewitt, Mariam Egal, Istaahil Maalin at the University of Wisconsin Milwaukee
MN LEND is member of the Great Lakes LEND collaborative (GLLC), a regional network of LEND programs. An annual event is hosted by a member center where faculty, staff, and trainees can come together to explore a topical area related to maternal and child health. The purpose of the 2013 GLLC event is to disseminate information and discuss issues related to differences in rates of identification of autism-spectrum disorders (ASD) due to race, ethnicity, gender and age. Each LEND program presented original content on their work related to ASD.

MN LEND Fellows, Mariam Egal & Bahjo Mahamud traveled with LEND faculty Amy Hewitt & Istaahil Maalin to Milwaukee, WI to participate in this years event. Dr. Hewitt’s presentation focused on a study of prevalence rates of ASD diagnosis in Somali population in Minnesota, and Istaahil Maalin participated in the parent panel sharing both her professional and personal knowledge of ASD. The GLLC continues to be a positive vehicle for regional LEND programs to share, collaborate, and disseminate information that is critical to the health and well being of children and families.

For information on future Great Lakes LEND collaborative events please contact Kelly Nye at knye@umn.edu.

Dr. James Begun’s book on teamwork in healthcare released by McGraw Hill

Dr. James Begun
Dr. James Begun
The MN LEND core faculty are an engaged and diverse group of researchers, clinicians, professors, and advocates. The work of MN LEND core faculty represent a broad range of publications, services, and outputs, which support the goals, and priorities of improving healthcare and services for children and families affected by neurodevelopmental disabilities and related conditions. Publisher McGraw-Hill recently released a new book from LEND core faculty, Dr. James Begun (Public Health) and Dr. Gordon Mosser titled Understanding Teamwork in Health Care (2013).

Health care today requires teams. The rise of multiple healthcare professions, each with its own specialties, has brought a rich array of knowledge and skills to the tasks of preventing illness and caring for the sick, but it has also created risks. Health care has enormous power to heal, and yet it is complex and often uncoordinated, or simply fragmented. By using teams, we can decrease the risks of fragmentation and achieve effective delivery of care. For team-based care to be successful, it must employ effective teamwork.

Understanding Teamwork in Health Care is premised on the position that in order to make care safer, more effective, less expensive, and more responsive to patients’ values and choices, healthcare teams need to perform much better than they often do. Most health care for a given patient condition is delivered by multiple types of professionals loosely working in teams. Failures of communication, collaboration, and team management too often degrade patients’ experience of care, their health outcomes, and the safety of their care while increasing costs. Large differences in authority and status between team members interfere with communication and inhibit participation by the junior members, leading to lost information, lost insights, and diminished contributions from the junior members. Similarly, potential contributions from patients to healthcare teams often are unrealized. Patients (or family members or other people whom they trust to speak for them) have the right to make the decisions about their care if they choose to do so.

Some shortfalls in teamwork arise because healthcare professionals are not adequately familiar with their colleagues’ professions. Too often the knowledge bases, skills, and values of people in other healthcare professions are not well known by physicians, nurses, social workers, and others. Sometimes they are barely known at all. In order for team members to make full use of each other’s knowledge and skills, they must know what the other team members can contribute. Moreover, some team dysfunction results from differences in professional values, and these difficulties cannot be overcome unless team members understand the differences.

Understanding Teamwork in Health Care
Understanding Teamwork in Health Care is a book about how to work proficiently in and with teams. The book’s purpose is to enable people working in health care to improve the performance of the teams they work in, lead, or manage so that the interests of patients are better served. The book aims to offset in some measure a deficiency in the education of almost all healthcare professionals in the United States, namely, the lack of training about working in teams composed of patients and people from various professions. Nearly all professionals working in health care are obliged to puzzle out interprofessional teamwork on their own. This book is intended to help healthcare professionals in this effort. Better interprofessional teamwork promises to improve patient care, outcomes of care, and costs. Better teamwork also promises to make working in health care more collegial and gratifying for healthcare professionals and for those who support them. It is time to take up the challenge of improving our teams.

Everyone is Unique, My LEND Experience

2012-13 LEND Fellow: Nicole Kast

LEND Fellow Nicole Kast
LEND Fellow Nicole Kast
"When you’ve seen one child with autism, you’ve seen one child with autism." Dr. Michael Reiff shared this comment during one of our first LEND seminars, and in many ways I think it is emblematic of my greatest learning from the LEND experience. Every child, every person, with a disability is unique and as such requires unique services, regardless of their official diagnosis. Whether during my clinical shadow shifts, interviews for research projects, or in the hours I spent participating in therapy with my Family as Teachers family, I was able to observe the incredible diversity of circumstances, needs, and strategies applied by families and practitioners. I think the International Classification of Functioning, Disability and Health explains it best when they describe the concept of disability as a dynamic interaction between individuals with certain physical or health conditions and personal and environmental factors.

Just yesterday I found myself sitting in a cafe in Cochabamba, Bolivia interviewing the psychologist who works with children with disabilities who have experienced sexual violence. The organization where I am conducting my field experience has a community-based rehabilitation program which supports people with disabilities in rural communities and a sexual violence prevention and attention program which provides legal, psychological and social services to children who have experienced sexual violence. In our conversation, we discussed the many ways in which perceptions of disability and rights are informed by culture, family, and other social factors. For many families in Bolivia an official diagnosis will never be possible and, even when possible, is often irrelevant. What is more important, and what the organization’s work focuses on, is developing inclusive environments where people with disabilities are able to achieve their potential.

Of course it is not necessary to travel all the way to Bolivia to see how disability is shaped by social factors. During LEND I was able to participate in a group project which assessed available services for undocumented immigrant children with special health care needs. Based on the assessment our group developed a state policy proposal. Since very little official documentation exists regarding undocumented immigrants in the state of Minnesota, the project involved interviews with staff at organizations like the ARC Greater Twin Cities, Portico Healthnet, Minnesota Dept of Health, and Hennepin County Medical Center to understand the needs and current health care access of this population. For me the project not only highlighted unmet needs but also revealed how the experience of disability, even between populations in the same country, can be so vastly different.

This project, among many others, made LEND a truly transformative experience. In addition to diverse experiences, LEND provided me with opportunities for growth and reflection and perhaps most importantly, it solidified my commitment to work in disability in a global context. Whether in Bolivia, Minnesota, or some other place, I know that the LEND experience will continue to inform my work.

Improving Diagnostic Processes, My LEND Experience

2011-12 LEND Fellow: Lindsay Ohmart

LEND Fellow Lindsay Ohmart
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

LEND Fellow Renee-Hepperlen
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

LEND Fellow Jennifer Reinke
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

Zoe and Jolene at the Great Wall
Zoe and Jolene at the Great Wall
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.

Zoe and Jolene in China
Zoe and Jolene in China
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

Stephany Mottet and Adele Dimian
LEND Fellows Stephany Mottet and Adele Dimian
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:

Tim Moore and Shirley Qian
LEND Fellows Tim Moore and Shirley Qian
  • 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
Members of the Minnesota State Team (Rachael Sarto - far right)
Read about Rachael's experience here

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


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).