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April 2005

News for the investigators, staff and associates of the Schiefelbusch Institute for Life Span Studies

1052 Dole Human Development Center

1000 Sunnyside Avenue

Lawrence, KS 66045-7555 (785) 864-4295 TDD (785) 864-5051

Back issues of Lifeline

Calendar of local seminars by and of interest to LSI affiliates and Friends: http://www.lsi.ku.edu/lsi/internal/seminars/seminars.html

Archive of conference seminars by LSI affiliates: http://www.lsi.ku.edu/lsi/internal/seminars/conference_presentations.htm

Submit your presentations: Send your submissions - and related PowerPoints, etc. - to Jessica Black at jessica@ku.edu.

Contents

Friends of the Life Span Institute gather for first event

Friends announce Graduate Student Research Award competition

Save the Date – Life Span Plans 50th Anniversary Celebration September 29 and 30, 2006

KU and Centro Ann Sullivan del Perú renew agreement

Videoconferencing (finally!) connects all four LSI sites

Work Group welcomes Haskell University Bridges student Focus on Research – IGDIs: An innovative tool for assessing development in infants and toddlers

Beach Center Humane Genome Project grant update

Web Sites of Note

Institute Activities: Honors, Presentations, Publications, Testimony
Central Office Announcements

Project Development

Life Span in the News

Wayne Sailor, associate director of the Beach Center on Disability is one of the three individuals credited with ending the era of institutionalization of people with developmental disabilities in Kansas for his role in convincing legislators to close the Winfield State Hospital in 1995.

Sailor, as well as Rud and Ann Turnbull, co-directors of the Beach Center on Disability, and, indirectly the behavioral science KU propagated, are cited by Dave Seaton, editor and publisher of the Winfield Daily Courier, in his history of Winfield State Hospital, The Long Road Toward “The Right Thing to Do” published in the Winter 2004-05 Kansas History journal:

“It was the network of intellectual activists, not SRS, the parents, nor the public that carried the closure movement to Kansas and persuaded policymakers to act. It was neither politics nor economics that closed Winfield State Hospital. It was the idea, established by the courts and enshrined as national policy under eight presidents, that the developmentally disabled had civil rights and that those rights should be protected. Combined with the idea of normalization and discoveries that behavioral treatment could be effective, this powerful concept became “the right thing to do.”

The article is at http://www.kshs.org/publicat/history/2004winter_seaton.pdf


David Ekerdt, director of the Gerontology Center, isn’t worried about the implications of all those Baby Boomers aging, in contrast to popular opinion. He says that the dependency ratio of children under 18 and adults over 65 to income earners won’t be that different from the 1960s and may even be better if more Baby Boomers work past age 65. See http://www.ljworld.com/section/citynews/story/202787

A former LSI Research and Training Center (RTCIL) NIDRR Scholar, Adam Burnett, was elected mayor of Melvern, KS last month. (See http://www.ljworld.com/section/citynews/story/203806 .) This isn’t the first time that the citizens of Melvern have backed Burnett, according to the Lawrence Journal World. Eleven years ago, they raised more than $30,000 to help him pay his medical bills from a diving accident that left him paralyzed from the chest down.

Burnett was the 2000-2001 NIDRR Scholar (U.S. Department of Education, National Institute on Disability and Rehabilitation Research) at RTC/IL. A NIDRR scholar is an undergraduate with an outstanding academic record and a disability who agrees to work at a NIDRR grantee center for a semester, assisting with projects and being mentored by center investigators. Adam’s work at the RTCIL included testing and evaluating an online survey to assess the risk of secondary conditions to individuals with disabilities, among other projects.

The KU Medical Center’s Developmental Disabilities Clinic (DDC),http://www.kumc.edu/ddc/, affiliated with Life Span through its Kansas University Center on Developmental Disabilities (KUCDD) went on the road to Dodge City for the first time as the DDC Outreach Team. Three LSI-affiliated researchers, R. Matt Reese, Ph.D., a child psychologist, DDC training director and KUCDD Kansas City assistant director, and Kathy Ellerback, M.D., MPH, a developmental pediatrician; Georgina Peacock, M.D., a developmental pediatrician, along with Debora Daniels, Ph.D., clinical assistant professor, a speech pathologist; Louann Rinner, M.S.Ed. an occupational therapist; and Gabriel Bargen, speech-language-hearing audiology doctoral student, assessed 13 children on April 21 and 22 for autism and related disorders. The DDC makes two or three trips a year to underserved parts of Kansas to assess and help develop treatment options.

In the Dodge City area families who want their child to be assessed by a developmental disabilities specialist are limited to driving 3 hours to Wichita or 6 to Denver – and this after being on a waiting list of up to 14 months. The team also participates in KUMC’s Telemedicine program (http://www2.kumc.edu/telemedicine/) to help diagnose and treat children across the state and at LSI affiliate Centro Ann Sullivan del Perú (CASP) in Lima, Peru, among other places. Full story at http://www.dodgeglobe.com/stories/042305/loc_20050423018.shtml.

Susan Slothower, director of behavioral services at Winfield’s Creative Community Living, appeared in several south central Kansas newspapers (El Dorado Times, Winfield Daily Courier, Arkansas City Traveler) because of her work as a certified Positive Behavior Support facilitator and instructor for the Life Span’s Kansas Institute for Positive Behavior Support (KIPBS). She was in the first class of professionals who acquired the additional PBS certification through KIPBS three years ago. KIPBS, directed by Rachel Freeman, is building a network of PBS professionals in small town and rural Kansas who can assess and help individuals with disabilities in their home and school/work environments. KIPBS facilitators fill a critical need for research-backed targeted solutions for behavior issues that often impede individuals’ success at school, work and in social settings.

Tiffany Patrice Hogan, a Ph.D. candidate in speech-language pathology was awarded a $6000 fellowship from the International Reading Association for her research on phonological awareness problems in children learning to read. Hugh Catts, chair of speech-language-hearing, and Holly Storkel, assistant professor of speech-language-hearing are her advisors. See http://www.news.ku.edu/2005/May/May9/reading.shtml.

The recently renamed and reorganized Department of Applied Behavioral Science was profiled in American Psychological Association’s newsletter, the Observer at http://www.psychologicalscience.org/deptProfile/viewProfile.cfm?viewID=119.

Friends of the Life Span Institute gather for first event

The spirit was warm, comfortable and quietly confident at the inaugural Friends of the Life Span event on April 9 at the Adams Alumni Center in Lawrence. The event began with a reception where longtime Life Span friends such as Virginia and Fred Merrill and John and Linda Stewart gathered with current LSI faculty Friends as well as alumni from near (Vance and Marilyn Hall, Steve and Carolyn Schroeder, Joe and Rita Spradlin) and far - Jim and Lee McLean (North Carolina), Sunny Foster and Gary Waldron (California).

All together 37 Friends attended the first Annual Dinner that was preceded by a business meeting. The dinner program featured remarks from Chancellor Robert Hemenway, Director Steve Warren and Distinguished Professor Emeritus Dick Schiefelbusch. The evening wound up with a presentation by Professor Steve Barlow on his groundbreaking invention, the Actifier, that trains at-risk premature infants to suck and evaluates their neuromotor functioning.

The Friends of the Life Span Institute, launched in 2004, is a group of supporters with a compelling interest in furthering the Institute’s research, development and teaching opportunities. The Friends annual membership for an individual or couple is $1000. The Friends serve as a sounding board for shaping the long-term goals of the Institute and help the Institute communicate Life Span’s mission to increase the circle of Friends.

The Friends of the Life Span Institute are Ross and Mariana Beach, Charles Greenwood and Judy Carta, Gregorio Diaz, Steve Fawcett and Kathleen McCluskey-Fawcett, Vance and Marilyn Hall, Betty Hart, Frances and Floyd Horowitz, Todd Little and Patricia Hawley, Jim and Lee Mclean, Fred and Virginia Merrill, Bob Mirman, Terry and Judi Paul, Mabel Rice, Todd and Cheryl Risley, Richard and Ruth Schiefelbusch, Steve and Carolyn Schroeder, Joe and Rita Spradlin, John and Linda Stewart, III, Rud and Ann Turnbull, John and Patty Turner, Gary Waldron and Carol Foster, Steve Warren and Eva Horn, Mike and Kathy Wehmeyer, Glen and Nancy White, Dave and Dee Yoder, Ed and Mary Ann Zamarripa.

Contact Steve Warren, 785-864-4295 or sfwarren@ku.edu, or Dale Slusser, 785 832 7458 or dslusser@kuendowment.org for more information on Friends of the Life Span Institute or other giving opportunities.

Friends of the Life Span Institute announce Graduate Student Research Award Competition

The Friends of the Life Span Institute will offer a Graduate Student Research Scholarship Award of $1,500 beginning with the Fall 2006 semester. Any LSI investigator can nominate a student for the award. Details will follow by separate email to all LSI investigators soon.

Save the Date – Life Span Plans 50th Anniversary Celebration September 29 and 30, 2006

The 50th Anniversary of the Life Span Institute’s “modern era” – when Dick Schiefelbusch took the helm in 1956 - will be honored and celebrated with a two days of events Friday, September 29, and Saturday, September 30, 2006, including an open house and reception on Friday and a conference and gala banquet on Saturday. Some of you have already been pressed into service in planning this event that will be chaired by Karen Henry. More may be commandeered in the coming months. So save that weekend and start spreading the word to Life Span alumni and friends.

KU and Centro Ann Sullivan del Perú renew agreement

The University of Kansas through the Life Span Institute has renewed its agreement with the Centro Ann Sullivan del Perú (CASP) in Lima, Peru, in April. CASP first became LSI's unofficial international affiliate in 1991 when the original agreement was signed. The agreement reflects the rich, intertwined history of the two institutes.

Liliana Mayo, CASP director and founder, pioneered the education and employment of people with autism and other developmental disabilities in Peru by starting a school in the garage of her home in Lima in 1979.

In 1985, she began an 11-year journey to earn her Ph.D. in Lawrence, attending KU in the spring semesters and applying what she learned at the Center during the rest of the year. Meanwhile, the Center grew and more and more of her colleagues from KU made the pilgrimage to Lima to both teach and learn.

Today, in its 25th year, the CASP serves 350 children and adults through 21 different clinical, professional and parent programs and serves as a model for programs in Perú and in eight other countries. A steady stream of her KU colleagues - close to 300 - who have volunteered as consultants, trainers, administrators and fundraisers has supported Mayo, notably, Judith Le Blanc, who serves as CASP research director, and former Life Span Director Stephen Schroeder and Carolyn Schroeder.

Most recently, in March, Glen White, director of the LSI’s Research and Training Center for Independent Living, held workshops at CASP on secondary conditions (e.g., pressure ulcers, urinary tract infections) and sexuality for people with paralysis. Several hundred persons attended the workshops – the first on these subjects in Peru. White sent one woman straight to the hospital when he learned that she had severe pressure ulcers and no cushioning in her wheelchair.

When he discovered that conventional wheelchair pads are out of the financial reach of most Peruvians, he began to explore the possibility of designing a pad that could be assembled from readily available materials in Peru. Currently, White, along with Wendy Parent, Kansas University Center on Developmental Disabilities assistant director, are developing a grant proposal with the Christopher Reeve Paralysis Foundation that would pilot a model - supportive entrepreneurship - for people with disabilities to become entrepreneurs in a variety of self-employment ventures such as this.

Videoconferencing (finally!) connects all four LSI sites

It has only taken 50 years, but the long hours on the road (or in the air in the case of pilots Dick Schiefelbusch and Joe Spradlin) are no longer necessary for Life Span researchers from different sites to meet. Internet-based videoconferencing systems are finally in place at all four sites of Life Span, paving the way for increased collaboration and knowledge dissemination across LSI sites, the state, country and even the world. New Polycom VSX 7000 Video Conferencing Systems have been recently acquired at both the Lawrence Life Span Institute Conference Room 1052 and the Kansas City, Kansas-based Juniper Gardens. The Parsons Life Span Institute and KU Medical Center’s compatible systems now allows Institute investigators and staff at all four sites to videoconference (audio and video) at the same time! The multipoint systems allow up to four sites to connect via IP (Internet Protocol) on the Internet.
These systems also allow LSI staff to videoconference with other people who have access to compatible video conferencing systems connected via the Internet – anywhere in the world.

The systems offer very high quality audio and video performance and are easy to use. The system can also be connected to a PC, VCR or DVD to display PowerPoint presentations and other applications, as well as video files. The possibilities are almost endless, according to Carolyn Thurman who is the Lawrence teleconferencing liaison.

LSI affiliated investigators and staff who have questions or would like to schedule the use of the Lawrence Polycom Video Conferencing System, please contact Carolyn Thurman cthurman@ku.edu or call at 864-4295.

Work Group welcomes Haskell University Bridges student

The Work Group for Community Health and Development welcomes Andy Deal, a recent Haskell University Bridges to the Future student working toward a graduate certificate in Community Health and Development. Andy plans on applying what he learns from the Work Group to help Native American communities address health issues such as diabetes and substance abuse.

The Bridges to the Future Program of the National Institute of General Medical Sciences and the National Center on Minority Health and Health Disparities, National Institutes of Health (NIH), established in 1992, promotes effective inter-institutional partnerships to improve the quality and quantity of underrepresented minority students being trained as the next generation of scientists.

Many underrepresented minority students enter terminal master's-degree programs and have the potential to become independent research scientists. That potential may be developed by improving the skills they need to be successful research scientists and by providing challenging curricula, outstanding mentoring, active research experiences, guidance, advice, and financial support. The Bridges to the Doctorate program supports partnerships between institutions offering terminal master's degrees and research institutions with doctoral programs in sciences related to biomedicine.

Focus on Research

This month we look at an innovative translational research project from Juniper Gardens Children’s Project that is part of a multi-university program to provide child care providers with a tool to measure development in infants and young children quickly, inexpensively and often. This can mean that at-risk children can get help early – when it matters the most.

IGDI's - Indicators of Individual Growth and Development for Infants and Toddlers

Charles Greenwood, Senior Scientist, Director, Juniper Gardens Children’s Project
Judy Carta, Senior Scientist, Project Director, Juniper Gardens Children’s
Dale Walker, Senior Scientist, Juniper Gardens Children’s Project

Investigators at the Universities of Kansas, Minnesota and Oregon launched the Early Childhood Research Institute on Measuring Growth and Development (ECRI-MGD) in October 1996 to produce a comprehensive system for measuring the skills and needs of individual children with disabilities from birth to eight years of age.

Indicators of Individual Growth and Development for Infants and Toddlers or IGDI's is KU’s contribution to the multi-university DOE-OSERS project. Arguably, the Juniper Gardens team took on the most challenging task of developing a way of measuring the development of infants and toddlers from birth to 42 months.

The project was partly in response to increasing demands for greater accountability for those childcare programs that are supported by initiatives such as the Federal Early Head Start program. In fact, the Early Communication Indicator of the IGDI’s has been integrated into Kansas and Missouri Early Head Start programs that can be based in childcare settings or in homes.

IGDIs are set of measures designed and validated for use by early childhood practitioners and interventionists for the purpose of monitoring children's growth and progress.

Unlike standardized tests that are administered infrequently, IGDI's are designed to be used repeatedly by practitioners in order to estimate each child's "rate of growth" over time. The benefit of this approach is that the information can be used to directly guide intervention design, implementation, and modification at reasonable levels of training, time, and cost.

IGDI’s are child performance measures especially designed for use by childcare practitioners to reflect individual children’s progress toward general outcomes like:

Communication: The child uses gestures, sounds, words, or sentences to convey wants and needs or to express meaning to others.

Movement/Motor: The child moves in a fluent and coordinated manner to play and participate in home, school, and community settings.

Social Competency: Child interacts with peers and adults, maintaining social interactions and participating socially in home, school, and community.

Problem Solving: Child solves problems that require reasoning about objects, concepts, situations, and people.

Adaptive Behavior: Child engages in a range of basic self-help skills including dressing, eating, toileting/hygiene, and safety/identification.

IGDI’s, like pediatricians’ height and weight charts display an individual growth trend over time compared to normative growth. What is shown is the trend in an indicator that is measured frequently over time (e.g., monthly, quarterly). Similar to height and weight charts used to monitor an infant's general health status, IGDI’s are used to measure progress (growth and development) within early communication, movement, social competency and other general outcomes (e.g., problem solving, adaptive behavior, etc.).

Some key differences between IGDI’s and other traditional forms of measurement are the following:

They may be repeated as often as weekly compared to most standardized measures requiring 6-months or more before they may be repeated. They take less time to administer, just six minutes. They are designed for use by practitioners in home and childcare settings as compared to clinically trained assessors (e.g., OT, PT, etc.) for use in clinical settings. They are directly relevant to decision making about interventions. They directly reflect growth over time, concepts that are important to practitioners and parents and others working with young children. They are comparatively less costly to learn and to use than are traditional forms of measurement.

How does it work?

The child care practitioner or home visitor is trained to observe a child and record his/her communication ranging from gestures to multi-word occurrences on a coding sheet while a family member or familiar caregiver plays with the child. Using toys commonly found in homes and childcare centers, the adult plays with the child to draw out communication in a non-directive way that follows the child’s lead. In some cases, the observer videotapes the session and scores it later. Finally, the results of the test are input into forms on the IGDI’s web site (http://www.lsi.ku.edu/jgprojects/igdi/). The IGDI’s web site allows the childcare practitioner to graph the child’s developmental in a number of way over time and in comparison to developmental norms based on Juniper Garden’s research of similar populations of children.

The future

Next for the project is a web site redesign that will allow scaling up to accommodate extending the IGDI’s to other early childhood programs across the country. The remaining IGDI’s – motor/movement; social competence, problem solving and adaptive skills are in various stages of testing and development.

Beach Center Human Genome Project grant update

Beach Center researchers Matt Stowe, Rud Turnbull, and Ray Pence have been conducting focus groups and interviews on disability and human genetic research with grassroots members of disabilities communities across the country for their National Human Genome Research Institute grant, a Framework for Disability Perspectives on the Human Genome Project.

The researchers have convened groups in New York City, Baltimore, Kansas City and four communities in North Carolina. They will analyze the concerns, expectations and opinions gleaned from the focus groups and interviews for their possible application to ethical, legal and social responses, educational initiatives and health care delivery practices.

The three-year Beach Center project is part of the unique Ethical, Legal and Social Implications Program that was built into the Human Genome Project in recognition of the awesome responsibilities of the new knowledge the genome project would generate.

According to Stowe, the Human Genome Project offers hope in the form of promising medical approaches to prevent, treat or even cure impairment, but generates concern over the possibility of genetic discrimination, violations of privacy and even the specter of a new eugenics movement.

Web Sites of Note

Jay Buzhardt and Linda Heitzman-Powell, both LSI assistant research professors at Juniper Gardens Children’s Project, developed an online foster parent training system through their company, Integrated Behavioral Technologies, Inc., with an NIH Phase 1 Small Business Innovation Research (SBIR) grant.

An online survey of Kansas foster parents showed that the most commonly cited reasons for not receiving in-service training were that training was held at inconvenient times and places. Buzhardt and Heitzman-Powell also found this to be true in their Phase I field evaluations, which also indicated an appeal for online training resources.

In Phase I, the researchers developed and field tested a training system that significantly increased foster parents’ knowledge in two critical content areas, required no prior training for them or social workers to use, and received high ratings from users in terms of importance, satisfaction, usability, and likelihood of future use.

The site is at http://www.ibtstaging.com/. The researchers have applied for a Phase II SBIR grant to support further development and a large-scale randomized study of the training system’s effectiveness in comparison to existing in-service training resources in Kansas.

Jennifer Lattimore (Beach Center/KUCDD) developed a web site for the Centers for Independent Living: Building Support for Transition-Aged Youth at http://www.wnyilp.org/RRTCILM/bestprac/index.html. This website is part of a three-year research project funded in by the U.S. Department of Education, Office of Special Education and Rehabilitation Services, National Institute on Disability Rehabilitation Research (NIDRR) and awarded to the Rehabilitation Research and Training Center (RRTC) on Independent Living Management and Services to the Western New York (WNY) Independent Living Project. The WNY Independent Living Project subcontracted with the Beach Center on Disability at the University of Kansas to conduct this project. The website was developed with the assistance of the Parsons LSI media group.

Carolyn Roy’s NICHD Study of Early Child Care and Youth Development has two websites:
For researchers: http://secc.rti.org/ and notably, a very creative one for kids participating in the study: http://www.son.washington.edu/research/seccyd/ done in a comic book format which was designed and implemented by the site coordinator at the Seattle site of the study and the University of Washington media department.

Institute Activities

Honors

Glen White, director of the Research and Training Center on Independent Living, received the 2005 Outstanding Educator Award from Phi Beta Delta Honor Society.

Stephen Fawcett, director of the Work Group for Community Health and Development was reappointed to the Institute of Medicine's Board on Population Health. This group recommends and approves studies for this unit of the National Academies of Science.

John Colombo chaired the review panel for "Attention, Learning, and Memory" for the 2005 Society for Research in Child Development meetings held in Atlanta, GA (April 7-10).

Jee-Hae Lim, Research and Training Center on Independent Living web master, was named the 2005 Outstanding International Woman Student Award from Emily Taylor Women’s Resource Center.

Four-hundred and thirty years of work! On May 3, the following Life Span Institute employees and affiliated faculty were awarded by KU for years of service at the 31st annual recognition ceremony. Yay us!

40 Years! Betty Smith; 35 Years! Darwin Eakins ; 30 Years! Steve Fawcett and Jean Ann Summers; 25 Years! Ann Turnbull and Rud Turnbull; 20 Years! John Colombo and Bernadine Roberts; 15 Years! Marilyn Figuieras, Wayne Sailor, Sheila Simmons and Nancy Tiede; 10 Years! Susan Bashinski, Nancy Cluchey, Mariann Graham, Karen Henry, Patricia Black Moore, Vera Stroup-Rentier, Marilyn Thompson and Susan Wakefield; 5 Years! Mary Abbott, Steven Barlow, Tammie Benham, Jessica Black, Nancy Wade Garner, Sandy Hill, Ayesha Hills, Debbie Moody, Dot Nary, Susan Palmer, Diana Robertson, Mansour Salami, Steve Warren.

Publications

Agran, M., Sinclair, T., Alper, S., Cavin, M., Wehmeyer, M., & Hughes, C. (2005). Using self-monitoring to increase following-direction skills of students with moderate to severe disabilities in general education. Education and Training in Developmental Disabilities, 40, 3-13.

Ohtake, Y., & Wehmeyer, M.L. (2004). Applying the self-determination theory to Japanese special education contexts: A four-step model. Journal of Policy and Practice in Intellectual Disabilities, 1, 169-178.

Saunders, R. R., & Saunders, M. D. (2005) In search of contingency awareness: Something old, something new, something borrowed . . . . Behavioral Development Bulletin, 1, 23-30.

Stock, S., Davies, D., & Wehmeyer, M.L. (2004). Internet-based multimedia tests and surveys for individuals with intellectual disabilities: A brief report. Journal of Special Education Technology, 43-48.

Suchowierska, M.A. & White, G. W. (2005) Disability-related participatory action research: standards for evaluating the scientific rigor and the collaborative nature. Apuntes de Psicologia, 21, (437-457).

Wehmeyer, M.L. (2005). Self-determination. In M. Hersen (Series Ed.) & G. Sugai & R. Horner (Vol. Eds.), Encyclopedia of Behavior Modification and Therapy: Volume III Educational Applications (pp. 1508-1511). Thousand Oaks, CA: Sage Publications.

Wehmeyer, M.L., Smith, S., & Davies, D. (2005). Technology use and students with intellectual disability: Universal design for all students. In D. Edyburn, K. Higgins, & R. Boone (Eds.), Handbook of Special Education Technology Research and Practice (pp. 309-323). Whitefish Bay, WI: Knowledge by Design.

Wehmeyer, M.L., Smith, S., Palmer, S., & Davies, D. (2004). Technology use by students with intellectual disabilities: An overview. Journal of Special Education Technology, 7-22.

Wehmeyer, M.L. (2004). Beyond self-determination: Causal Agency Theory. Journal of Developmental and Physical Disabilities, 16, 337-359.

Zhang, D., Wehmeyer, M., & Chen, L.J. (2005). Parent and teacher engagement in fostering the self-determination of students with disabilities: A comparison between the U.S. and the Republic of China. Remedial and Special Education, 26, 55-64. Families, Professionals and Exceptionality: Positive Outcomes through Partnership and Trust is off the press. For the fifth edition of their textbook, Beach Center co-directors Ann Turnbull and Rud Turnbull were joined by Elizabeth Erwin, Queens College of the City University of New York, and Leslie Soodak, Pace University. The book may be ordered at www.prenhall.com

The instructor’s manual and a companion website will be available in June. Ancillary materials were developed by former Beach Center doctoral student H. Corine Frankland, who is now assistant professor of special education at Western New Mexico University.

Presentations

Anderson, C.J., & Colombo, J. (2005, April) Visual scanning and pupillary responses in young children with autism spectrum disorder. Society for Research in Child Development, Atlanta, GA.

Bigelow, K. M., & Walker, D. (2005, April). Teaching language-promoting strategies and planned activities training to high risk parents. Poster presented in session for linguistic differences and language intervention in at-risk populations at the Biennial Meeting of the Society for Research in Child Development, Atlanta, GA.

Nancy Brady and Tammy Steeples presented four workshops at Truman State University in Kirksville, MO on Friday, April 22nd for the Annual Communication Disorders Association Spring Speaker Event sponsored by the TSU Chapter of the National Student Speech-Language Hearing Association. The four presentations were entitled Stages of Prelinguistic Development, Assessment and Intervention Strategies for Prelinguistic Children, Adaptations for Special Populations (children who are affected by Down syndrome, Fragile X syndrome, deaf-blindness or who use AAC), and Interventions Aimed at Parents and Other Adults Working with Children.

Carta, J. J., Greenwood, C. R., & Walker, D. (2005, April). Expressive communication indicator: A new approach for measuring growth toward communication outcomes for very young children. Electronic poster presented at the Biennial Meeting of the Society for Research in Child Development, Atlanta, GA.

Colombo, J. The development of attention: basic and applied perspectives. Invited colloquium, Department of Psychology, Florida International University.

Colombo, J., Shaddy, D.J., Anderson, C.J., Blaga, O.M., Writt-Haas, D.M., & Kannass, K. N. (2005, April). Estimation and processing of time intervals in infancy. Society for Research in Child Development, Atlanta, GA.

Kannass, K.N., & Colombo, J. (2005, April). Attention during intermittent and continuous distraction conditions. Society for Research in Child Development, Atlanta, GA.

Lattimore, J., & Golden, S. (2005, April). The self-determined career development model: Job placement and advancement. Paper presented at the Vocational Evaluation and Career Assessment Professionals National Forum, Portsmouth, VA.

Lattimore, J., Thompson, E, & Golden, S. (2005, April). Enhancing community capacity: The self-determined career development model. Paper presented at the 5th Annual KansTrans Conference, Wichita, KS.

Dot Nary, Research and Training Center on Independent Living made a presentation on Disability and Secondary Conditions to the Kansas Healthy People 2010 Steering Committee in Topeka, April 22.

Odom, S., Horn, E., Lieber, J., Palmer, S.B., Daniels, J. (2005, April). Children’s School Success: An experimental model to promote school success. Presentation at the 2005 CEC Annual Convention and Expo, Baltimore, MD.

Palmer, S. B. & Lee, S. (2005, April). A model for parents and teachers to promote the self-determination of children with disabilities. Presentation at the 2005 CEC Annual Convention and Expo, Baltimore, MD.

Palmer, S.B. & Soukup, J.H. (2005, April). 5th annual Kans Trans Transition Conference, Wichita, KS. Presentation titled Self-determination in the classroom: Teachers and students sound off.

Poston, D. (2005, April 26-28) Using family quality of life tools to increase the likelihood that programs will make a positive difference for families. Keynote address presented at the Disability and Family Quality of Life sponsored by the Down Syndrome Research Foundation of Canada conference, Burnaby, British Colombia.

Ravesloot, C., Seekins, T. & White, G.W. (in press). Living Well with a Disability health promotion intervention: Improved health status for consumers and lower costs for policy makers. Rehabilitation Psychology.

Associate Beach Center Director Wayne Sailor presented at the Second International PBS Conference in Tampa, Florida March 10 and 11. His presentations were: “Anchoring School-wide Positive Behavior Support in Comprehensive School Reform: School-wide Applications Model” and “A Broader Context for School-wide Positive Behavior Support? The School-wide Applications Model”

Saunders, M. D., & Saunders, R. R. (April, 2005). Evidence-based practices: What's it all about? Invited Research Seminar, Department of Special Education, Federal University of Sao Carlos, SP, Brazil.

Jerry Schultz, Work Group for Community Health and Development, conducted a workshop on Using the Community Tool Box to support Community-Based Participatory Research at the Society of Public Health Educators (SOPHE) 2005 Midyear Scientific Conference in Boston, April 13 and 14.

Matt Stowe, research associate, presented "Inclusion and the Reauthorized IDEA" at the statewide "Together We Can Learn" inclusion conference held February 12 in Overland Park, KS. Families Together, a non-profit organization serving Kansas families who have a son or daughter with a disability, sponsored the conference. This year's conference attracted more than 100 parents, teachers, service providers, and others interested in inclusion.

Research Associate Professor Jean Ann Summers presented at the Mississippi Early Intervention Conference held April 5 in Jackson, MS. Connected with earlier research she completed at the Juniper Gardens Children's Project, Summers' talk was "Daddies Are Parents, Too: Involving Fathers in Early Intervention" and was based on information collected in the Early Head Start Father Studies.

Thompson, E., & Lattimore, J. (2005, April). The self-determined career development model: Enhancing rehabilitation services and community capacity to promote job and career outcomes. Paper presented at the 2005 Issues Forum, Overland Park, KS

Turnbull, A. (2005, April 26-28) Family quality of life as an outcome of supports and services. Keynote address presented at the Disability and Family Quality of Life sponsored by the Down Syndrome Research Foundation of Canada conference, Burnaby, British Colombia.

Ann Turnbull presented the keynote address at a workshop held during the statewide conference of Family Connection, the South Carolina Parent to Parent program, held March 19 in Columbia, SC. She also presented the keynote address at the 15th Annual Conference of Community Resources for People with Autism in Holyoke, MA. Members of this organization have agreed to participate in Beach Center research on administrative structures and family quality of life.

Walker, C. & Palmer, S.B. (2005, April). TIPS on transition into postsecondary studies of students with learning disabilities. Poster presented at the 2005 CEC Annual Convention and Expo, Baltimore, MD.

Walker, D., Diamond, K. E., Farran, D. C., & Powell, D. R. (2005, April). Observations of a keen observer: The contributions of Susan Kontos to the study of early childhood education and care (D. Walker, Chair). Memorial panel presented at the Biennial Meeting of the Society for Research in Child Development, Atlanta, GA.

Associate Director Michael Wehmeyer presented the keynote address at a lecture series held in March at San Diego State University. His talk, “Self-Determination: Theory to Practice,” was part of a distinguished lecture series sponsored by the Department of Special Education in the College of Education at SDSU.

White, G. W. (2005). Increasing health and full participation for people with disabilities in Perú. The Community Psychologist, Winter, (37-40).

White, G. W. (in press). Independent Living. In N. J. Salkind (Ed). Encyclopedia of human development. Thousand Oaks, CA: Sage Publications (page numbers not yet available)

White, G. W., Klatt, K., Gard, M., Suchowiersks, M., & Wyatt, D. (2005). Empowerment through Research: A Primer to Guide Understanding and Use of Research to Make a Difference. Lawrence, KS: The Research and Training Center on Independent Living at the University of Kansas.

White, G.W., Rooney, C., Fox, M. H., & Rowland, J. (2005, January). Nobody Left Behind: SILCs as Partners in Disaster Preparedness and Response for People with Disabilities. The 4th National SILC Congress, Phoenix, AZ.

White, G. W., Vo, T.H.Y., & Denney, N. (2005, February). Requesting Accommodations to Increase Full Participation in Higher Education: Self-Advocacy Training for Postsecondary Students with Disabilities. Presented at the Pacific Rim Meeting on Disabilities, Honolulu, HI.

White, G. W. (2004, July). Spinal cord injury and sexuality. Christopher Reeve Paralysis Foundation Sponsored Workshop at Centro Ann Sullivan del Perú, Lima, Perú.

White, G. W., & Gard, M. (2005, March). Bowel dysfunction: What is it and how do we manage it? Christopher Reeve Paralysis Foundation Sponsored Workshop at Centro Ann Sullivan del Perú, Lima, Perú.

Gard, M., & White, G. W. (2005, March). Depression: What is it and how do we manage it? Christopher Reeve Paralysis Foundation Sponsored Workshop at Centro Ann Sullivan del Perú, Lima, Perú.
White, G. W. (2005, March). Spinal cord injury and sexuality. Christopher Reeve Paralysis Foundation Sponsored Workshop at Centro Ann Sullivan del Perú, Lima, Perú.

Training

Ann Turnbull met in April with participants in a year-long training program in Kansas for parents of children with disabilities and individuals with disabilities. The Kansas Partners in Policy Making program offers training to 24 Kansans a year on such topics as legal rights, evidence-based practices, and strategies that facilitate successful advocacy outcomes. Turnbull worked with the group on the topic of inclusive education.

Central Office News and Announcements

Project Development

Paul Diedrich

Past Submissions not Previously Reported

1. Stephen Fawcett and Jerry Schultz submitted a new, three-year proposal “Reducing Risk for Health Disparities in a Small Midwestern Hispanic Community” to HHS/NCMHD on April 14, 2005.

2. Bryan Smith submitted a new, four-month proposal “Shape Up!” to the Girl Scouts of Kaw Valley Council, Inc (prime contractor to the Sunflower Foundation) on April 15, 2005.

3. Wendy Parent and Michael Wehmeyer submitted a new, four-year proposal “Young Women with Developmental Disabilities Take Charge: A Gender Equitable Model for Expanding Job Options Through Self-Directed Employment” to DE-WEEA on April 18, 2005.

4. Wayne Sailor and Amy McCart resubmitted, a three-year proposal “Comprehensive Systematic Reform Through Community-School Partnerships Promoting Safe, Disciplined, Drug Free Environments for Students in Kansas City, Kansas” via the Kansas City Kansas School District, prime contractor, to HHS/DOJ for their Safe Schools/Healthy Student Initiative on April 29, 2005.

5. Lisa Bowman submitted her fifth-year grant performance report “Project Las Estrellas” to DE/OBEMLA on April 30, 2005.

6. Mabel Rice, in collaboration with Steve Zubrick and Catherine Taylor at Curtin University, Australia, submitted their fourth-year, non-competing continuation “Twins and Singletons with Specific Language Impairment” to NIDCD on May 1, 2005.

7. Matthew Stowe, H.R. Turnbull and Ann Turnbull submitted their third-year, non-competing continuation “A Framework for Disability Perspectives on HGP” to NHGRI on May 1, 2005.

8. Steve Warren and Nancy Brady submitted their third-year, non-competing continuation “Family Adaptation to Fragile X Syndrome” via the University of North Carolina (prime contractor) to NICHD on May 1, 2005.

9. Steven Warren and Peter Smith, in conjunction with numerous other contributors, submitted their thirty-ninth year, non-competing continuation “Kansas Mental Retardation/Developmental Disabilities Research Center” to NICHD on May 1, 2005.

Upcoming Submissions

Four, two-year proposals will be submitted to the DE/OSERS/OSEP RFP - “Steppingstones of Technology Innovation for Students with Disabilities” on May 6, 2005:

1. Susan Bashinski will resubmit “Outcomes for Children who are Deaf-Blind after Cochlear Implantation” via Western Oregon University (prime contractor)

2. Amy McCart and Wayne Sailor’s will resubmit “Determining Efficacy and Feasibility of Using a Web-Based Analysis Tool for Improving Academic and Social Outcomes for Students with Disabilities” via the Kansas City, Kansas Public Schools #500 (prime contractor)

3. Kathryn Saunders will submit “Computerized Instruction of Fluent Letter Naming”; and

4. Muriel and Richard Saunders will submit “A Research and Technology Driven Curriculum for Infants and Children with the Most Severe Impairments”

5. Kathryn Saunders will resubmit her five-year, competing continuation “Interdisciplinary Research Training in MR/DD” to NICHD on May 10, 2005

6. Nancy Brady and Susan Bashinski will submit their third-year, grant performance report “Promoting Communication Outcomes for Children with Deaf-Blindness through Adaptive Prelinguistic Strategies” to DE/OSERS/OSEP on May 16, 2005.

7. Cheryl Utley, Paul Markham and Charles Greenwood will submit their third-year, grant performance report “Preparation of Minority Leadership Personnel: Special Education Doctoral Training in Research – Validated Interventions with Culturally Linguistically Diverse Students with Mild Disabilities in Urban Classroom Settings” to DE/OSERS/OSEP on May 16, 2005.

8. Charles Greenwood and Barbara Terry will submit their second-year, grant performance report “Post-Doctoral Leadership Training Program in Intervention Research for Culturally/Linguistically Diverse Students with Disabilities” to DE/OSERS/OSEP on May 16, 2005.

9. Dale Walker and Charles Greenwood will submit their second-year, grant performance report “Developing and Testing a Model for the Use of Meaningful Outcome Measures for Infants and Toddlers” to DE/OSERS/OSEP on May 16, 2005.

10. Jane Wegner will submit her second-year, grant performance report “Augmentative and Alternative Communication in the Schools: Leadership and Access (ACTS)” to DE/OSERS/OSEP on May 16, 2005.

11. Debra Kamps, Charles Greenwood, Carmen Arreaga-Mayer and Mary Abbott will submit their fifth-year continuation “Center for Early Intervention in Reading and Behavior to Improve the Performance of Young Children” to DE/OSERS/OSEP on May 23, 2005.

12. Cheryl Utley, Lisa Bowman and Wayne Sailor will submit their fourth-year, continuation “Positive Behavioral Support as a Comprehensive, Proactive and School-Wide Intervention Program for Preventing Problem Behaviors, Referrals, and Suspensions in Urban Elementary At-Risk Students and Students with Emotional/Behavioral Disorders” to DE/OSERS/OSEP on May 23, 2005.

13. Dale Walker will submit her fourth-year, continuation “Promotion of Communication and Language Development with Infants and Young Children in Inclusive Community-Based Child Care” to DE/OSERS/OSEP on May 23, 2005.

14. Michael Wehmeyer is submitting his third year, grant performance report “Beyond High School: Replicating a Multistage Model Infusing Self-Determination into 18-21 Services” to DE/OSERS/OSEP on May 23, 2005.

15. Charles Greenwood and Jay Buzhardt will submit their second-year, grant performance report “Monitoring and Reporting Intervention Results for Children with/without Disabilities Ages Birth to Three: Developing a National Web-based Support Technology (Steppingstones Phase 1 Project)” to DE/OSERS/OSEP on May 23, 2005.

16. Howard Wills, Debra Kamps and Charles Greenwood will submit their second-year, grant performance report “Secondary and Tertiary Level Intervention in School-Wide Positive Behavior Support Systems: Experimental Studies in Research to Practice” to DE/OSERS/OSEP on May 23, 2005.

New Awards (not previously funded) Information

Again, there are no new awards to report at this time, though there are a couple of proposals pending where we anticipate awards sometime in the next thirty days.

Comments and questions to: lifespan@ku.edu


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