Outreach Summer 2014

OutreachA P U B L I C A T I O N O F T H E C E N T E R F O R D I S A B I L I T I E S

A University Center for Excellence in Developmental Disabilities Education, Research and Service

�e summer 2014

Inside: Optimizing Health: Bridging Health Care Transitions for Youth with Special Health Care Needs

Center for Disabilities Connects South Dakotans, Enhances Lives

First Annual Spring Symposium

The Outreach 2 summer 2014

Optimizing Health: Bridging Health Care Transitions for Youth with Special Health Care Needs

by Richard Parent-Johnson, Ph.D.

Four and a half million youth [ages 12-17] in the United States have special health care needs. This includes youth with cystic fibrosis, Down syndrome, cerebral palsy, sickle cell anemia, autism, developmental disabilities, catastrophic illness, as well as youth with other special health care needs (YSHCN). Five hundred thousand of these youth turn 18 every year [Bloom et al., 2012]. Happily, the continuous improvement in medical care for these youth means that this number will continue to grow. With that great success, however, comes the even greater challenge of providing them with “optimal health care.”

Optimal health care includes “ensuring that high-quality, developmentally appropriate health care services are available in an uninterrupted manner as the person moves from adolescence to adulthood” [Cooley & Sagerman, 2011]. For youth with special health care needs, this move involves a particularly complex — but critical — health care transition. As it is defined here, health care transition is the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.

The Center for Disabilities at the University of South Dakota Sanford School of Medicine has partnered with the Heartland Genetics Services Collaborative to understand and address some of the issues related to developing processes and practices that support successful health care transitions for youth with special health care needs. This work has included a recent survey of pediatric medical geneticists in the Heartland Collaborative region. This survey (N = 55; 52 percent response rate) found that although 70 percent of practices state that they manage or co-manage their patients’ medical care, the age groups served decreased during adolescence with over 40 percent of practices serving children ages birth to five years of age and approximately 15 percent serving adolescents ages 12 to 17 years. A related qualitative study involving interviews with 49 genetic health care professionals in five clinics across the Midwest supported these findings and revealed additional challenges impacting the provision of transition services. These include: 1) no one person

The Outreachsummer 2014

A Publication of the Center for Disabilities at the University of South Dakota Sanford School of

Medicine Department of Pediatrics.

ADMINISTRATION

Wendy Parent-Johnson, Ph.D., CRC, CESPExecutive Director

EDITORIAL STAFF

Derric MillerEditor and Writer

Richard Parent-Johnson, Ph.D.Writer

Eric DalseideLayout and Design

The Center for Disabilities is a division of the Department of Pediatrics at the USD Sanford School of Medicine. As South Dakota’s University Center for Excellence in Developmental Disabilities Education, Research and Service, the Center for Disabilities works with others to create opportunities that enhance the lives of people with disabilities and their families through training, services, information, research and community education. The Center for Disabilities delivers activities across the lifespan from a community-based, family-centered and culturally-competent perspective. The center is also an affiliate of the National Organization on Fetal Alcohol Syndrome.

Center for Disabilities1400 West 22nd StreetSioux Falls, SD 57105

1-800-658-3080 (Voice/TTY)605-357-1439

www.usd.edu/[email protected]

Center for Disabilities of SD

twitter.com/CD_SouthDakota

www.youtube.com/Center4Disabilities

© Copyright 2014

This newsletter is available in alternate format upon

request by contacting the Center for Disabilities.

has designated responsibility, 2) billing and reimbursement limitations, 3) lack of adult providers to transition to, 4) complexities of disability service resource systems, and 5) distance between locally driven transition services and clinic locations.

Beyond these findings, a large body of evidence supports the position that “the problems that YSHCN face in transitioning to adulthood are, in large part, caused by interrupted access to high-quality health care” [Lotstein et al., 2009; 2010]. This interruption is frequently traced to “barriers in care coordination associated with our bifurcated health care delivery system in which pediatric medicine does not smoothly link up with the medical care received by adults” [Viola et al., 2014].

Based upon these and other findings, the Center for Disabilities and the Heartland Collaborative efforts are now focused on addressing a next set of questions. Broad questions include: Does transition mean something more than transfer of care? How do changing patient demographics affect our role in their health care transition? What role does any specialist have


In July, the National Rehabilitation Association announced that Wendy Parent-Johnson, Center for Disabilities executive director, was named the Journal of Rehabilitation’s new editor.

“The Journal of Rehabilitation is a premier journal held in utmost regard by researchers and practitioners and known to be the go to source for state of the art information in the field of rehabilitation,” said Parent-Johnson. “My vision for the journal would be to build on this foundation and further enhance its scope and impact.” Parent-Johnson plans to grow the publication by focusing on three main areas: manuscript submissions, readership, and marketing.

Wendy Parent-Johnson Named New Editor of the Journal of Rehabilitation

With over 30 years of experience in the overall disability field, Parent-Johnson has published numerous book chapters and journal articles and has co-authored several books, while also providing hundreds of presentations and workshops during her career. Her areas of interest and research are supported/customized employment and transition from school to work for individuals with severe disabilities, inclusive post-secondary education, job coach certification, health care transition, and employment first, among others. She has served on the National Rehabilitation Association’s board of directors since 2008.

in the health care transition from pediatric to adult models of care? If a specialist provides a consultative model of practice, what obligation or role does the specialist’s team have if they encounter the patient only once or twice? What inspires an adult provider to work with young adults with more complex conditions and what challenges do they face? Is it feasible to develop a transition methodology or tool that could be used by any specialist or parent at any entry point into the health care system? Are there novel transition strategies that build upon the patient’s identity and relationships and could be leveraged in the transition process?

One promising approach involves applying the construct of social capital to the transition process. Such a model would create strategies and protocols that invest in the young adult and enhance the connections across the network of providers.

If you are interested or have questions related to these exciting activities, please contact Richard Parent-Johnson at [email protected] or Wendy Parent-Johnson at [email protected].

1. Bloom SR, Kuhlthau K, Van Cleave J, Knapp AA, Newacheck P, Perrin JM. Health care transition for youth with special health care needs. J Adolesc Health. 2012 Sep;51(3):213-9. doi: 10.1016/j.jadohealth.2012.01.007. Epub 2012 Mar 22.

2. Cooley WC, Sagerman PJ. Clinical report supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011; 128, 182-200.3. Lotstein DS1, Kuo AA, Strickland B, Tait F. The transition to adult health care for youth with special health care needs: do racial and ethnic disparities exist?

Pediatrics. 2010 Dec;126 Suppl 3:S129-36. doi: 10.1542/peds.2010-1466F.4. Viola D, Arno PS, Byrnes JG, Doran EA. The postpediatrician transition: A life span care perspective. Journal of Disability Policy Studies. 2014; Vol 24(4) 238-246.

Transition Employment Deaf-Blind ProgramTechnical Assistance and Consultations

Academic Training

Autism Spectrum Disorder Program

Birth to �reeCommunity EducationDisability Services Health and Wellness

Information Dissemination South Dakota LEND ProgramTraumatic Brain Injury Services FASD Clinics

Connects South Dakotans, Enhances LivesCenter for Disabilities


The real story lies both in the tales of those the Center for Disabilities serves and its employees who administer the vital components of each program.

“We work to promote best practices and to support individuals with disabilities to live and work in their communities,” said Wendy Parent-Johnson, Ph.D., C.R.C., C.E.S.P., Center for Disabilities executive director. “We focus on building capacity, leveraging resources and promoting services that can support people through education and training, technical assistance, research and information dissemination.”

Leadership and Public HealthInstitutional diversity and inclusiveness is a University

of South Dakota commitment, and that commitment to underserved populations—including people with disabilities—can be highlighted by one of the Center for Disabilities’ programs called RISE-UP. The RISE-UP program, funded by the Centers for Disease Control (CDC) in conjunction

The Center for Disabilities at the University of South Dakota Sanford School of Medicine, one of the nation’s 67 University Centers for Excellence in Developmental Disabilities Research, Education and Service (UCEDD), has built a long tradition of helping those with disabilities and their families. Through training, services, information, research

and community education, the Center creates and provides opportunities that enhance lives. In fact, the Center for Disabilities has done so for 43 years, since its founding in 1971–but that’s only part of the story.

with the Kennedy Krieger Institute, takes on the issue of public health from a key, underserved population perspective, encouraging students from those respective populations to enter into the field of public health.

RISE-UP is a national consortium led out of Kennedy Krieger Institute, including the University of Southern California and the University of South Dakota. RISE-UP is one of five CDC Undergraduate Public Health Scholars programs hosted at Columbia University Medical Center, Morehouse College, the University of Michigan and Kennedy Krieger Institute.

RISE-UP is an externship where eight undergraduate students, who are also representatives of underserved populations, work with other students to focus on public health and to emphasize the education of health disparities. Part of the program’s experience is on a national scope, where the students visit the Kennedy Krieger Institute and Johns Hopkins University, and the CDC in Atlanta, Ga.

“The Center integrates research, medicine and education


into practical applications,” said Tyler Hemmingson, RISE-UP coordinator. “I enjoy working here because of the people representing those fields and the tremendous impact they have on individuals and communities.”

RISE-UP is under the umbrella of the South Dakota Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program. Currently, 43 LEND programs operate in 37 states. LEND provides one year of specialized training that focuses on the interdisciplinary training of professionals for leadership roles in the provision of health and related services to infants, children and adolescents with neurodevelopmental and related disabilities and their families.

Employment and Individuals with DisabilitiesIntegrating into their communities can be a struggle for

people with disabilities. While health outcomes and early diagnoses are a critical need for people with disabilities, there are other obstacles they face as well—like unemployment. The Department of Labor announced in January 2014 that the unemployment rate for people with disabilities was 13.3 percent. The overall employment rate for people without disabilities at that same time was 6.6 percent, meaning people with disabilities face twice the national unemployment rate. In plain terms, it’s at least twice as hard—if not more—for a person with a developmental, cognitive or physical disability to find a job in today’s job market compared to those without a disability.

Kendra Gottsleben has worked at the Center for Disabilities since 2010 as its webmaster and social media coordinator. She was born with a rare medical condition called

Mucopolysaccharidpsis (MPS) Type VI; she is also an advocate and speaker.

“After graduating from college I wanted to find a job where I could apply my energy and experience to helping others,” explained Gottsleben. “My dream had always been to be able to work with children and their families with life threatening illnesses or disabilities and that is why the Center is an amazing fit. Also, our mission statement is ‘Dedicated to Life Without Limits.’ I’ve lived much of my life with an attitude of not being limited by others or even by myself. I work for an organization that believes the same.”

Early InterventionThe Center for Disabilities provides resources and services

that run the entire life course, from birth to death. One of the programs that focuses on early intervention is Birth to Three.

Birth to Three is a program of the South Dakota Office of Special Education, Division of Educational Services and Support. The program works in a capacity building and referral manner, supporting families with children age birth to 3 by identifying needs and accessing community services.

Featured in the summer 2013 issue of the Center for Disabilities newsletter, The Outreach, was the Kuper family: parents Abby and Donny, and their daughter, Gracie. Born five weeks premature, Gracie was referred to the Birth to Three program by their pediatrician, who diagnosed her with torticollis, a condition defined by an abnormal, asymmetrical head or neck position. Gracie and the Kupers met for formal evaluations from an occupational therapist, physical therapist and a developmental


expert for formal evaluations. After nine months, Gracie passed all of her goals during a review and was cleared.

“I really feel that without Birth to Three, Gracie would still be trying to catch up developmentally to kids her age,” Abby Kuper said. “Now, she surpasses them!”

Some people may find working with one program or service at the Center for Disabilities can actually segue into finding further support–more specific support–with another program in the organization. “Although we may serve different programs, we are all committed to the same thing–helping families and service providers meet the needs of individuals with challenging disabilities,” said Rose Moehring, Deaf-Blind program coordinator.

Information and Resources Providing these kinds of services, directly working out in

the community, is one way the Center for Disabilities supports South Dakotans. Being a link to and providing information and resources is another way it makes an impact on the community.

For one West River family, the Center for Disabilities resources, specifically the Fetal Alcohol Spectrum Disorder (FASD) Educational Strategies book, made all the difference.

Emily and Michael Beck are proud parents of seven foster and adopted children, some of whom are diagnosed with FASD. Students diagnosed with FASD can struggle in the classroom with both behaviors and with learning, and the Becks used the FASD Educational Strategies book to show their children’s teachers why the methods they were using to encourage their children to finish their homework was ineffective. Emily described the moment as “triumphant.”

Clinics and Technical AssistanceMost people around the state who know of the Center

for Disabilities identify it by its Autism Spectrum Disorder (ASD) Program. The Autism program has been a leader in the state for more than 25 years in providing state-of-the art diagnostic evaluation services, training and technical assistance to individuals, families, providers and pre-service professionals.

In addition to diagnostic Autism clinics, the Center also provides diagnostic Fetal Alcohol Spectrum Disorders clinics, a developmental clinic, and provides statewide training and technical assistance on ASD, FASD, Traumatic Brain Injury, Technology and Computer Based Interventions, and services for individuals who are deaf-blind.

The future of the Autism Spectrum Disorder Program will focus on utilizing technology to expand the full scope of services available with additional emphasis on underserved populations. With the recent announcement of the new prevalence rates from the CDC, a change from one in 88 children born with Autism to one in 68, the Autism program is becoming an even more crucial resource for South Dakotans.

43 Years and Counting The Center for Disabilities plans to continue building

upon its 43-year legacy. Strategically, it plans to create greater opportunities for students, including employment and internships, above and beyond what programs like LEND and RISE-UP offer.

A research director position has been filled by John Johnson, allowing the Center for Disabilities to expand its current research efforts and create a research agenda to drive the organization’s activities. A main crux of that research agenda will be model development and data collection to inform policy and decision-making on disability issues in the state.

The aforementioned capacity building initiative can also be seen in the new Assistive Technology (AT) Workgroup that the Center for Disabilities is a part of, along with numerous other organizations around the state. The group will hold a series of webinars–focused on technology and education–that will be open to all interested persons in South Dakota. Topics currently being planned for the launch are preparing freshmen for college, understanding tablet/computer domains, employment, independent living and more.

“It’s an exciting time for all of us at the Center for Disabilities,” said Parent-Johnson. “With the level of expertise and dedication of our employees to serving South Dakotans with disabilities, I can’t wait to see how much of a difference we can all make together over the coming years.”

And part of that success will again lie in the stories the Center for Disabilities can tell. •


The USD Center for Disabilities held its inaugural Spring Symposium April 14–16 in Chamberlain, S.D. at Cedar Shore Resort. As the first conference held solely by the Center for Disabilities, with no outside vendors, exhibitors or keynote presenters, it gave Center staff the opportunity to personally connect with their audiences, consisting of direct service providers, advocates, families of individuals with disabilities, educators, employment specialists, community support specialists, case managers, rehabilitation counselors and anyone interested in programs and services that cover the life course of a person with a disability.

The purpose of the symposium was threefold: to bring all of the Center’s unique trainings in Autism Spectrum Disorder, Traumatic Brain Injury, Fetal Alcohol Spectrum Disorders and more to one place at one time so those who can only attend one or two trainings per year can access a number of trainings over the course of three days; to showcase the Center’s research and development in areas such as employment, health care transition, and technology; and to hold a World Café-style community

Center for Disabilities Holds Spring Symposium

conversation with attendees, allowing Center staff to get a pulse on the gaps and needs in the community, and to find solutions for those questions and obstacles.

A brief awards ceremony was also held on April 15 during the lunch program, where Linda Turner from the Department of Education, Special Education Programs received the Collaboration Award and Kari Oyen, Ed.S., NCSP received the Distinguished Service Award from the Center for Disabilities.

At the end of the conference door prizes, including a Kindle Paperwhite, a one-night stay at Cedar Shore, a digital picture frame and two i-Tunes gift cards were given away.

Planning is underway for next year’s conference. A proceedings summary highlighting the events of the symposium and the input and feedback from participants to guide the future activities of the Center and to share with policy and decision-makers around the state is near completion. •

SAVE THE DATE – 2015 CD SymposiumMarch 30 - April 1

theworldcafe.com


The Center for Disabilities has named Dr. Eric Kurtz as the new Leadership Education in Neurodevelopmental and Related Disabilities (LEND) director. He succeeds Dr. Joanne Van Os-del, who retired in July.

The South Dakota LEND program is housed within the Center for Disabilities at the Univer-sity of South Dakota Sanford School of Medicine. There are currently 43 LEND programs in 37 states. LEND provides long-term graduate level specialized training which focuses on the interdis-ciplinary training of professionals for leadership roles in the provision of health and related services to infants, children and adolescents with neurodevelopmental and related disabilities and their families. The South Dakota LEND Program is supported by a grant from the Maternal and Child Health Bureau.

Dr. Kurtz has previously served as the Center’s Clinical Operations director, Autism Spectrum Disorders Program director, Discipline Head for Autism and Related Disorders with LEND, and is Assistant Professor of Pediatrics. He has many years of clinical experience providing specialized psychological services in clinical, school, and forensic settings.

“LEND graduates are aware of a broader, inter-connected health care dynamic, and under-stand the need for family-oriented, culturally sensitive and interdisciplinary services,” said Dr. Kurtz. “I look forward to this new opportunity to lead the LEND program and work to prepare the next generation of healthcare and related service professionals.”

For more information about the Center for Disabilities and LEND, go to www.usd.edu/cd.

Caitlin Borges is a Licensed Social Worker and a Sioux Falls’ native who received her bachelor’s degree in Social Work from the University of Sioux Falls in 2010. She moved to California after graduation, where she gained experience as an Autism Interventionist providing direct services to children with Autism and other developmental disabilities.

Borges received training and supervision for Applied Behavior Analysis interventions and other therapeutic methodologies to work one on one with children in their homes, schools, and

group settings. Upon returning to South Dakota in 2012, she began working with adults in the mental health field at Avera Behavioral Health Center’s inpatient hospital, where she is trained to lead Cognitive Behavior Therapy and Dialectical Behavior Therapy groups. In addition, she is currently a student in the Master of Social Work Program at The University of South Dakota and will graduate in May of 2015. Other experience includes working as a Residential Treatment Counselor at Children’s Home Society and field placement with the Department of Social Services in Child Protection.

Her work with the Center will focus on providing supports and resources to families across the state of South Dakota through the utilization of telehealth modalities.

Center for Disabilities Announces Eric Kurtz, Ph.D.

as New LEND Director

New Staff


John R. Johnson, Ph.D., joined the Center for Disabilities as Director of Research and Development in June of 2014. He is responsible for the design, development and implementation of research and evaluation projects including mandated data collection and reporting for the Center. He also pursues opportunities for expanding Center activities

with the writing and submission of grants. Johnson grew up in the Midwest and taught students with severe disabilities as a Special Education teacher in Ohio and Kentucky. He completed his doctorate at the University of Illinois at Urbana-Champaign working as Research Associate at the Transition Research Institute and later as the Director of Evaluation at the National Transition Alliance. He also worked for a period of time at the Institute for Community Inclusion, a UCEDD located in Boston, Mass. He recently retired after 14 years of service to San Diego State University in the Department of Special Education with Emeritus status as Associate Professor. His professional interests include outcome-based research addressing the impact of services on youth and adults with disabilities; self-determination; transition of youth with disabilities from school to adult life; disability studies; health care transition; and, the effects of collaborative leadership development, capacity-building and systems change initiatives. Johnson lives with, is owned, and trained by his Golden Retriever, Rowan, who is a certified service dog that welcomes visitors in his office.

Lacy M. Knutson, M.S., BCBA joined the Center for Disabilities as a Training Associate in January of 2014. She assists with training, consultation, and technical assistance for

the Autism Spectrum Disorders Program, Fetal Alcohol Spectrum Program, and the Traumatic Brain Injury Program across the state of South Dakota. Knutson received her bachelor’s degree from South Dakota State University and her master’s degree in Applied Behavior Analysis from St. Cloud State University. Knutson began her career working in group homes and vocational day centers for

adults with disabilities. Following a move to Colorado, she began working with the birth to 18 population in which she developed vocational and teen groups, performed in-home services, center-based services, as well as school consultations. After returning to the region, Knutson worked at a specialized residential school for students with disabilities. She has experience providing behavioral and skill-based assessments, functional analyses, functional behavior assessments, preference/reinforcer assessments, behavior reduction, and a variety of skill acquisition programs. She is an active member of her discipline and is a member of the Association for Behavior Analysis International (ABAI) as well as various Special Interest Groups within ABAI.

Stephanie Krusemark has been a service coordinator with Birth to Three since 2005. She joined the Center for Disabilities in February of 2014 to continue service coordination in Brookings, Moody, Miner and Lake Counties. Krusemark earned her bachelor’s degree in Elementary Education at the University of Minnesota at Morris. Stephanie and her husband

live with their two children, Kaden and Kylie, in Madison, S.D.

Emily A. Meier, M.A., joined the Center for Disabilities as a Training Associate in September of 2014. She assists with training, consultation, and technical assistance for the Autism Spectrum Disorder Program, Fetal Alcohol Spectrum Program, and the Traumatic Brain Injury Program across the state of South Dakota. Meier received her bachelor’s degree

in Elementary Education with several endorsements, including Early Childhood Special Education, from Dakota Wesleyan University. She received her master’s degree in Leadership in Schools from the University of Sioux Falls. She began her career teaching Early Childhood Special Education, with a focus on teaching children who had been diagnosed with an Autism Spectrum Disorder. She then served as an Education


Coordinator/Special Education Director for an alternative school. Meier has experience providing a variety of training and technical assistance in the areas of Autism Spectrum Disorder, severe and challenging behavior, social skills programming and educational programming. She also has experience with behavioral and skill-based assessments, functional analyses, functional behavior assessments, preference/reinforcer assessments, behavior reduction, and teaching a variety of skill acquisition programs.

Dr. Richard Parent-Johnson joined the Center for Disabilities as a Senior Research Associate. Prior to coming to the Center, he held the same position at the Center for Research

on Learning at the University of Kansas and held a courtesy appointment in the Department of Special Education at KU. His doctorate is in Sociology from the University of Kansas. Dr. Parent-Johnson has been the PI, Co-PI or project coordinator on multiple state and federal grants. For the past 12 years, his work has focused on the iterative development and implementation of “universal

design” educational products and processes that serve the individualized transition needs of persons with mild to severe disabilities. Other recent work involved design and development of online tools that support the work of job coaches as they transition their clients with significant disabilities into real-world employment. Dr. Parent-Johnson’s focus on the models and practices of more inclusive learning environments provides him the opportunity to look concretely at the specifics of individual learning content as well as at the social systems in which that learning takes place. He has a special interest in social determinants of health and how social capital works to bridge gaps in health care transitions for special needs populations. Dr. Johnson is knowledgeable of mixed methods research methodologies with particular expertise in qualitative data analysis.

Bethany Poppinga graduated from Harrisburg High school and is now a participant of Project Skills. Through Project Skills, she is currently employed at the Center for Disabilities as a staff assistant. Poppinga’s duties include developing and designing the Center’s internal newsletter, designing the Center’s organizational chart and phone directory, creating new form covers

for areas like travel, and data entry, among other responsibilities.

Nancy C. Saufley, M.S., joined the Center for Disabilities as a Training Associate in August of 2014. She assists with training, consultation, and technical assistance for the Autism

Spectrum Disorders Program, Fetal Alcohol Spectrum Program, and the Traumatic Brain Injury Program across the state of South Dakota. Saufley received her bachelor’s degree in Family Social Science from the University of Minnesota and her master’s degree in Special Education from St. Cloud State University. Saufley began her career working in schools, group homes and vocational day centers for adults

with disabilities. After receiving her master’s degree, she taught special education at the middle and high school level in the Twin Cities, Minnesota area. Following a move to Sioux Falls, S.D. she began working at the Center for Disabilities as an autism specialist in which she provided training, technical assistance and was an evaluator for the autism spectrum disorder diagnostic clinic. Saufley has experience providing a variety of training and technical assistance in the areas of autism spectrum disorder, severe and challenging behavior, social skills programming and educational programming. She also has experience with behavioral and skill-based assessments, functional analyses, functional behavior assessments, preference/reinforcer assessments, behavior reduction, and teaching a variety of skill acquisition programs.

Documents

Outreach Summer 2014