The Lifeline Online is a newsletter of the Schiefelbusch Institute for Life Span Studies at the University of Kansas
The Life Span Institute at the University of Kansas
In This Issue
The Centers and their inception dates
The Schiefelbusch Institute for Life Span Studies is a center of centers collectively dedicated to discovering research-based solutions for the challenges of human and community development, disabilities, and aging.The Life Span Institute at Parsons 1956
Juniper Gardens Children's Project 1964
Kansas Mental Retardation and Developmental Disabilities Research Center 1967
Kansas University Center on Developmental Disabilities 1973
Research and Training on Independent Living 1980
Child Language Doctoral Program 1983
Beach Center on Disability
Gerontology Center 1990
Merrill Advanced Studies Center 1990
Work Group for Community Health and Development 1990
Center for Physical Activity and Weight Management 2001
Center for Biobehavioral Neurosciences in Communication Disorders 2002
Friends of the Life Span Institute
The Man Behind the Scene Award
In recognition of his 37 years of devoted and astute service to the Bureau of Child Research and then the Life Span Institute, Ed Zamarripa was singled out as one of the of the most influential contributors to our history and a real but unsung hero.
"Ed is a remarkable advocate for the future," said Steve Warren. "Ed's advice is always based on what would help us achieve our mission now and in the future. it is never based on who he might like or not like or what he himself might like to do or not do. In other words, he’s a man of vision driven by deep seated values."
We have an official history of our first 50 years now! Dick Schiefelbusch, Joe Spradlin and Bob Hoyt, in particular, labored over this project for more than a decade. As usual, it was Dick who would not give up. Steve Warren got behind it and Steve Schroeder was sent in as The Closer. Between them, Dick and Steve nudged and cajoled contributions from 25 others. Our very good friends at Brookes Publishing, conspicuously, Melissa Behm, gently but firmly whipped us and the unruly manuscript into a very handsome volume with Rob Hileman and Karen Henry acting as liaisons. We think you will be proud to own this volume (and you may even be in it!) . Click on the image above to order from Oread Books or order directly from Brookes or Amazon.
But Wait There's More!
More about our history and contributions is also archived in cyberspace:
On our web site:
We looked back at 50 years, decade-by-decade guided by those like Dick Schiefelbusch who was the new beginning and continuing on with those with a mere 20 or 30 years here - and even by a few newcomers who are leading us on. See how they movingly told our story online and don't miss the three multimedia videos created for the event. Through vintage photos, clippings, and audio/movie clips these videos trace the contributions of the BCR/LSI in a larger context. (You will need both RealPlayer™ and Quicktime™ on your computer to view the videos.) Watch!
1970s-1980s: Leading the Field (presentations)
On the Kansas Public Radio web site:
"Fifty years ago, a small group of researchers at the University of Kansas set out to prove that even severely disabled children could learn. To the surprise of most professionals at the time, these scientists, led by Dr. Richard Schiefelbusch, succeeded. Health Reporter Bryan Thompson has more as part of our series, “Kansas Health: A Prescription for Change”. LIsten.
On the KU History web site:
Just click the image above to read all about how Dick Schiefelbusch and colleagues lobbed a bombshell into a Milwaukee audience in 1958. Metaphorically - of course.
On the KU News web site:
...As the Bureau of Child Research, the first research project was initiated at Parsons State Hospital and Training Center in 1958. This project went on to prove that people with even profound mental retardation could learn.
This opened up possibilities. One of these was the full-scale demonstration project, Mimosa Cottage, which showed that individuals with mental retardation could live and work in the community. Next came Juniper Gardens Children’s Project in Kansas City, Kan. KU behavioral psychologists — called some of the best in the country by Psychology Today in 1972 — took their science out of controlled environments and into the distressed urban core in schools and homes to address why so many children failed academically. They also took on other social problems and showed results in scientifically meaningful ways...Full story
On the Parson's Sun web site:
"In the 1950s, people with mental retardation and developmental disabilities lived in institutions that had little emphasis on creating learning opportunities.
Half a century later, the focus is on what more those with developmental disabilities can learn." Full story.
In Kansas Alumni magazine:
"Sometimes, in the bleakest of moments, the human spirit triumphs. As a young American navigator in a German prisoner-of-war-camp, Richard Schiefelbusch founds ways to laugh." Full story in Kansas Alumni no. 6 2006.
We were nearly 200 strong, scientists, researchers, staff, students, friends and leaders from the state and national disability communities when we commemorated and celebrated this 50-year endeavor of doing science and doing good on September 29 and 30.
And we were only the representatives of 350 current employees and the several thousands who have studied, supported, taught and discovered here since Dick Schiefelbusch was given two rooms, a part-time secretary and the charge to bring to life an entity that existed in name only in 1956.
Through this collective and collaborative effort the Bureau of Child Research and the Schiefelbusch Institute for Life Span Studies helped bring about a sea change in the status and outcome of people with disabilities and disadvantages over the last 50 years.
Declaring the LSI a “national treasure,” keynoter Dr. Yvonne Maddox, Deputy Director of the National Institute of Child Health and Human Development said that, “the Institute is truly a testimony to how the concept of scientific research was first envisioned, as a means for translating the most basic discoveries to improving the health of the nation.” (Maddox keynote and Remarks: Executive Vice Chancellor Barbara Atkinson, Richard Schiefelbusch, Stephen Schroeder and Steven Warren online.)
Thought-provoking questions were raised and examined by the distinguished panel of national disability research and policy leaders and our own distinguished Mabel Rice and Steve Fowler. (Note: Those of you who did not attend will want to see this presentation and the following Q & A online! Panel Part I and Panel Part II.)
In a future world “flattened” by globalization that assigns supreme value to those who can compete, how will children with significant and sustained challenges in deciphering and negotiating symbolic and non-symbolic systems compete?
This challenge was posed by Edward Kame'enui, Commissioner for Special Education Research, Institute of Education Sciences, U.S. Department of Education and Director of the Institute for the Development of Educational Achievement (IDEA). Kame’enui suggested that in the next ten years there will be an “adjudication” of what passes as rigorous evidence in educational research.
George Jesien, Executive Director, Association of University Centers on Disabilities, spoke to the balancing of interests in how science is funded, conducted and disseminated. While acknowledging the energizing nature of advocacy groups who want to push the scientific agenda, for example, he noted that “science has its own process.”
Maddox, touching close to that point, challenged scientific researchers to bring the community in early “as we think about studies,” to build the community’s trust in, value of and response to biomedical research. Maddox listed newborn screening and autism research as top national priorities.
Mabel Rice, Distinguished Professor of Advanced Studies and Director of three of LSI’s 12 centers, quipped that BCR/LSI was clinical and translational “…before we knew what translational was.” Today, she says, LSI scientists are at the “biobehavioral interface” but asserted that there is a desperate need for solid biobehavioral theory.
As a society, we must be prepared for the consequences of our research-to- practice successes, urged U.S. Assistant Surgeon General Dr. José Cordero. Cordero, who directs the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention, suggested that research and public health policy should be less focused on “cross-sectional” and more on longitudinal data. People with Downs Syndrome, for example, are now living well into middle age. But with that success has come the emergence of conditions in later life not previously seen in that group.
One of those conditions is an accelerated Alzheimer-like syndrome, said Steven Fowler, Senior Scientist, Schiefelbusch Institute for Life Span Studies and Professor of Pharmacology and Toxicology, Fowler described how scientists are testing compounds on the molecular level in genes that are associated with mental retardation common to humans and other organisms. One recent study found that, surprisingly, antibiotics had a beneficial effect on a gene that is known to be involved in the protection of neurons. This was confirmed in mouse models. Fowler speculated that this and other such discoveries could be used preventatively in children with Downs syndrome.In his closing remarks, Steve Warren recalled that 50 years ago, many people - even at KU - scoffed at the ambitions of our founders, “pragmatic prairie optimists” like Dick Schiefelbusch and Joe Spradlin, and again in the dark days of 1980s, when it looked like the Bureau would collapse from radical federal budget cuts. “And yet we are here tonight as a living example of the folly of those predictions," he said.
Today, the challenges, failures and crises are not over, Warren warned, but suggested that grounding ourselves in our history of persistence that has created solutions to the problems of human and community development, disability and aging will continue to inspire us in the future:
Quoting Helen Keller, Warren asserted, “No pessimist ever discovered the secret of the stars or sailed to an uncharted land, or opened a new heaven to the human spirit.”
Once again, the landmark 1995 Risley-Hart study was cited in a major article, this time in "What it Takes to Make a Student," by Paul Tough, in the November 26 New York Times Magazine.
Tough credits Life Span Institute researchers Risley and Hart ( Associate Professor Emeritus Betty Hart and former KU (now adjunct and University of Alaska) Professor Todd Risely, with identifying a reason for the huge gap in school performance between poorer and more privileged children: that differences in early parent-child verbal interaction resulted in huge differences in vocabulary acquisition of children from welfare, working class, and professional families.
Meaningful Differences in the Everyday Experiences of Young American Children is available from Brookes.
Pioneering new ways of assessing the impact of federal and state mandates to integrate people with disabilities into their communities will occupy Director Glen White and the Research and Training Center on Independent Living for the next five years.
The project, named the Research and Training Center on Measurement and Interdependence in Community Living is supported by a $3.25 million grant by the National Institute on Disability Rehabilitation and Research.
Scientists in the field of disability research from Washington University, the University of Montana, Cornell University and the Oregon Health Sciences University will collaborate on the project. Full story .
Almost nothing is known about how to reduce the incidence of obesity in adults with developmental disabilities - until now. A collaboration between Life Span weight management and developmental disabilities scientists aims to develop a simple, effective and inexpensive diet plan that will eventually be promulgated throughout the Kansas DD network.
As people with DD have moved out of institutions over the past decades, they've made the same poor diet choices that have lead to America's soaring obesity rate - only more so, according to Richard Saunders, the director of the three year study.
In 1993, the last large scale study of people with DD, showed obesity rates at 40.9 percent for those who live semi-independently to 55.3 percent for those who live at home. "And we assume these rates have climbed just like those of the general population since 1993," Saunders said. In 2005, 23.9 percent of the total adult U.S. population was obese.
Teaming with disability experts Saunders and Muriel Saunders are Joseph Donnelly, Director of the Physical Activity and Weight Management Center and colleague Bryan K. Smith, Assistant Research Professor. Debra Sullivan,
The three-year will study will target significant weight loss in at least 100 people from northeast Kansas through a modified version of a proven 1200 calorie-a-day diet plan. In year three, the researchers will take their resulting modified plan on the road in day-long workshops to the Kansas network of community developmental disabilities organizations.
The project is actively recruiting in Johnson County and recruitment will soon expand to Wyandotte, Franklin, and Douglas Counties. For more information, contact Richard Saunders at 785-864-0578 or 913-579-6043.
Liliana Mayo, director and founder of Life Span international affiliate, Centro Ann Sullivan del Perú, gave the eighth Annual Lawton Chiles International Lecture on Maternal and Child Health in the Americas on September 26 in Bethesda, Maryland.
Mayo discussed how she has built a world-class model for educating children with intellectual disabilities and their families and communities into what she calls a "lifetime of inclusion."
The annual lecture, jointly sponsored by the NICHD and the Fogarty International Center, is a part of the NICHD's mission to understand and improve the health of children, adults and families worldwide.
Mayo was also recognized as an international leader in her selection as a panelist on health and medicine at the ninth International Congress on Community Services for Children, Youth and Families with Special Health Care Needs, December 7 in Washington, D.C.
John Colombo, Professor of Psychology and LSI Associate Director for Cognitive Neuroscience, and doctoral student Christa Anderson found that children with autism reacted differently when shown images of faces than other children. Since that difference was that their pupils constricted, as precisely measured by eyetracking technology, the researchers theorize that ASD could be diagnosed and treatment begun much earlier in life even in infants. The study results were published in in the October issue of the Journal of Clinical and Experimental Neuropsychology. Full story.
The Friends of the Life Span Institute have announced the winners of the second annual Friends of the Life Span Institute Graduate Research Assistant Awards. The Awards were established in 2005 to support the research and professional development of outstanding graduate research assistants affiliated with Life Span Institute projects. Each of the two winners will receive $1500 for this purpose.
Christa Anderson (pictured above) has received the award for an advanced graduate student in the dissertation state of their work. Anderson is a doctoral student in Cognitive Psychology, and has contributed to several projects at the Life Span Institute, including projects funded by the National Institute of Health and the National Science Foundation. Her research has focused on early identification and treatment of children with autism spectrum disorders. Anderson has proven her abilities in research, clinical and classroom settings. She has contributed to several publications and has given numerous presentations, in addition to committee memberships and awards. Anderson has worked closely with Life Span scientists and faculty such as Steve Warren and John Colombo.
Meredith Poore has received the award for a promising graduate student in the first stages of graduate school. Poore is a second year graduate student in the Intercampus Program in Communication Disorders, and is involved in two National Institute of Health projects. She is interested in investigating the development of ororhythmic behaviors with the goal of improving early intervention strategies for children at risk for speech disorders. Poore has made contributions in research, teaching, and publishing. She has received several honors and awards, and is involved in projects with Life Span scientists and faculty such as Sarah Hargus Ferguson and Steven Barlow, among others.
More than 60 participants attended a summit on family support convened by the Beach Center December 3-5 in Lawrence, KS. The Second National Summit on Family Support for Enhancing Families’ Quality of Life brought together family members, self-advocates, practitioners, program administrators, and researchers to define, justify, and advance the need for funding services that support families of persons with disabilities. Topics included family support and self-advocacy, family support and self-determination, and Medicaid as a source of funds to support families. The first Summit, also convened by the Beach Center, was held in January 2006.
Nancy Brady, Associate Professor, has been appointed Associate Editor for the Journal of Speech Language and Hearing Research.
Brady studies the development of communication and language in young children and in individuals with developmental disabilities. Her research has focused on describing development of gestures and prespeech vocalizations, beginning augmentative communication use, and negotiations of conversational breakdowns.
Aging Literacies by Angela Crow has been published by Hampton Press. This book considers how aging affects the field of rhetoric and composition studies, examining implications for faculty development of shifting definitions of literacy and shifting views of aging. The book was written while Dr. Crow was a post-doctoral fellow with the NIA Training Program in Communication and Aging directed by Susan Kemper.
Colombo, J. & Cheatham, C. (2007, in press). The emergence of endogenous attention in infancy and early childhood. In R. Kail (Ed.), Advances in child development and behavior (pp. 283-322). New York: Elsevier.
John Colombo, Professor of Psychology, and LSI Associate Director for Neuroscience, participated in a lecture tour organized by the Malaysian Association of Pediatricians, Obstetricians, and Gynecologists on Nutrition and Stimulation in Early Development, and sponsored by Fonterra. He gave lectures on "Brain development, early experience, and critical periods in development" in Kuala Lumpur, Penang, and Johor Bahru, August, 8-16
Utley, C., moderator. Multicultural/Urban Special Education: Issues, Trends, and Perspectives. 2006 Council for Exceptional Children-Kansas Federation, 44th Annual Conference, Lawrence, Kansas, October 4-5, 2006
Annual International Conference on Young Children with Special Needs and Their Families, sponsored by the Division for Early Childhood of the Council for Exceptional Children, October 19-22 in Little Rock, Arkansas.
Brotherson, M.J., Roberts, R., Swett, J., Turnbull, A., Summers, J.A., Snyder, P., et al. Early childhood summit on family supports and services.
Brotherson, M.J., Summers, J.A., Blue-Banning, M., Sharp, L., Epley, P., Gotto, G., Zuna, N.,& Friend, A. Performance ethnography: Family supports and services. Gotto, G., Summers, J.A., & Zuna, N. Measuring administrative structures to improve early childhood programs. Odom, S., Czaja, C., Horn, E., Butera, G., & Palmer, S. Children’s School Success: Curriculum Content and Child Outcomes.
Summers, J.A., Brotherson, M.J., Friend, A., Epley, P., Gotto, G., & Blue-
Banning, M. >Exploring family services: What do families really get from early intervention?
Zuna, N., Gotto, G., Summers, J.A., & Epley, P. Family health care, quality of life, and child development: Impacts and outcomes (poster).
Turnbull, A., International Association for the Scientific Study of Intellectual Disability (IASSID) European Conference.
Past Submissions not Previously Reported
1. Jerry Schultz and Steve Fawcett submitted their fifth year continuation “Community Monitoring Documentation System” to KsSRS on June 27, 2006.
2. Martha Hodgesmith, Glen White and Michael Fox submitted their second year continuation “State Implementation Project for Preventing Secondary Conditions and Promoting the Health of People with Disabilities to KsH&E on June 28, 2006.
3. Richard Saunders, Joseph Donnelly and Muriel Saunders submitted a new, three-year proposal “Reducing the Incidence of Obesity in Adults with Developmental Disabilities in Kansas” to Kansas Council on Developmental Disabilities on July 3, 2006.
4. Sarah Ferguson submitted a new, three-year RO3 “Acoustic Correlates of Clear Speech” to NIDCD on July 14, 2006.
5. Charles Greenwood and Kathy Thiemann submitted a second supplement for the “Early Speech Project” to Infoture, Inc. on July 14, 2006.
6. Glen White submitted a five-year renewal “Rehabilitation Research and Training Center (RRTC) on Measurement and Interdependence in Community Living” to DE-NIDRR on July 21, 2006
7. David Lindeman submitted his sixth-year continuation “Southeast Kansas Community Action Program (SEK-CAP): Program Evaluation Project to SEKCAP on July 21, 2006
8. Jerry Rea submitted his second-year continuation “Southeast Kansas Pilot Project to Replicate the Oregon Model of Intervention with Antisocial Youth and Families to KsSRS on July 25, 2006
Eight proposals were submitted in response to DE-IES Special Education Research Grants competition which spanned five different research topics on July 27th:
9. Mary Abbott and Jay Buzhardt submitted a new, four-year proposal “Final Development for the Language Arts Multisensory Program (LAMP): Creation of Three Supplemental Student Workbooks and a Comprehensive Staff Development Guide with Multimedia Resource CD and Online Teacher Instruction”;
10. Jay Buzhardt and Mary Abbott submitted a new, four-year proposal “Development and Evaluation of a Web-based ClassWide Peer Tutoring – Beginning Reading Instructional and Progress Monitoring Program”;
11. Kathryn Saunders submitted a new, four-year proposal “Computerized Instruction of Prerequisite Skills for Success in Early Reading Instruction;
12. Kathleen Baggett submitted a new, four-year subcontract “Promoting Early Social-Communicative Competency in Toddlers with Autism” via the University of Northern Colorado;
13. Judy Carta and Mary Abbott submitted a new, four-year subcontract “Efficacy of a Three-tiered Model in Early Intervention to Address Language and Literacy Needs of Children at Risk” via the University of Nebraska at Lincoln;
14. Charles Greenwood submitted a new, three-year subcontract “Examining Reliability and Validity of the Child Outcomes Summary Form” via SRI International;
15. Charles Greenwood, Dale Walker and Jay Buzhardt submitted a new, four-year proposal “The Infancy of Preschool Early Literacy Connection: Validation Studies of the Early Communication (ECI) Indicator of Growth and Development”; and
16. Debra Kamps, Howard Wills, Greg Hanley, Rachel Thompson and Charles Greenwood submitted a new, four-year proposal “Class-wide Function-Based Intervention Teams: A Research to Practice Agenda for Functional Behavioral Assessment (CW:FIT)”
17. Eva Horn and Susan Palmer submitted their fourth-year continuation “Children’s School Success” to Indiana University, prime contractor to NICHD on July 31, 2006.
18. Sara Sack submitted her second-year grant performance report “Kansas State Plan for Assistive Technology” to GPR on 4198 to DE-RSA on August 3, 2006.
19. Sara Sack submitted her eighth-year continuation “Assistive Technology Services for Vocational Rehabilitation (VR) Customers on August 8, 2006.
20. Pam Cress submitted a five-year renewal subcontract “Great Plains Disability and Business Technical Assistance Center” to the University of Missouri @ Columbia, prime contractor to DE-NIDRR on August 8, 2006.
21. Debra Kamps, Linda Heitzman-Powell and Kathy Thiemann submitted a new, five-year proposal “Kansas Autism Center of Excellence: A Transition Study Using Peer Connections” to NIH in response to their Autism Centers of Excellence (RO1 competition on August 11, 2006.
22. Steve Barlow submitted a new, two-year proposal “Entraining the Suck Central Pattern Generator in the Premature Infant” to the Gerber Foundation on August 15, 2006.
23. Joseph Donnelly submitted a new, four-month proposal “Long-term Clinical Experience Using a Carbohydrate-restricted Diet” to Duke University on September 7, 2006.
24. Dale Walker submitted her third-year continuation “Training and Technical Assistance Support for Administration of the Early Childhood Indicator Assessment” to the Missouri Head Start Association on September 7, 2006.
25. Dale Walker, Charles Greenwood and Judith Carta submitted their third-year continuation “Evaluation Workscope of Early Communication Indicator (ECI)” to KsSRS on September 8, 2006.
26. Janet Marquis submitted her second-year continuation “School Readiness Project” to the KsDE on September 9, 2006.
27. Joseph Donnelly, et.al. submitted a new, three-year proposal “Center for Physical Activity, Nutrition and Weight Management” to the Health Care Foundation of Greater Kansas City on September 15, 2006.
1. Mabel Rice will submit her five-year, center renewal “Biobehavioral Sciences of Communication Disorders”
2. Mabel Rice will submit her twelfth-year continuation “Morphosyntactic Abilities of SLI Probands and Families” to NIDCD on October 1, 2006.
3. Steven Fowler will submit his eighteenth year continuation “Biophysical Study of Antipsychotics Behavioral Effects” to NIMH on October 1, 2006.
We will report on NEW October 1st submissions in the next issue.
New Awards (not previously funded) Information
1. Steve Fawcett received a new, nine-month subcontract “Development of Undergraduate Courses in Public Health and Epidemiology” from KUMCRI, prime contractor to the Association of Teachers of Preventive Medicine that began, April 1, 2006.
2. John Colombo received a new, five-year subcontract “DHA Supplementation and Pregnancy Outcomes” from KUMCRI, prime contractor to NICHD, that began April 4, 2006.
3. Amy McCart received a new, one-year award “Integrating Effective Evidence-Based Approaches for Working with Children and Their Families Focusing on Co-Occurring Behavioral and Mental Health Disorders in At-Risk Homes” from the Health Care Foundation of Greater Kansas City that began June 1, 2006.
4. Amy McCart received a new, six-month SBIR subcontract “The e-Serve Initiative: An Empirically Supported, Web-based Educational Decision-Making Product Providing Academic and Behavioral Data Analysis and Proactive Intervention Selection Suggestions for School Personnel” from Software Outfitters, prime contractor to DE, that began June 15, 2006.
5. David Lindeman received a new, two-year award “Continuous Improvement Grants to Personnel Preparation Programs Under the Part D of the Individuals with Disabilities Education” from KsDE that began July 1, 2006.
6. Judy Carta and Steve Warren received a new, four-year award “Preventing Child Maltreatment Through a Cellular-Phone Technology-Based Parenting Program” from HHS/CDC/NCIPC that began September 1, 2006.
7. Kathryn Saunders received a new, five-year award “Recombinative Generalization of Within-syllable Units in MR” from NICHD that began September 1, 2006.
Six other newly funded projects are currently pending award documents that will be announced in the next issue.