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In This Issue
The Lifeline Online is a newsletter of the Schiefelbusch Institute for Life Span Studies at the University of Kansas Online, printable version and back issues.
Karen Henry, Editor
The Life Span Institute at the University of Kansas 1052 Dole Human Development Center 1000 Sunnyside Avenue Lawrence, KS 66045-7555 (785) 864-4295 TDD (785) 864-5051 lsi.ku.edu
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 1988
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 May 2007 Nation's Health covered the report on the impact of Hurricane Katrina on people with disabilities that was recently released by the Research and Training Center on Independent Living. The study was funded by the National Institute on Disability and Rehabilitation Research. A major finding of the report was the need for the national network of Centers for Independent Living and emergency management entities to plan for emergencies together. CILs are the designated resource agencies for people with disabilities across the nation.
The Kansas newborn screening program will be expanded The number of treatable conditions for which newborns are screened will expand from seven to 29, a “core panel” recommended by the March of Dimes. The program received $800,000 in startup funding. (From KANSAS ACTION FOR CHILDREN LEGISLATIVE UPDATE, May 3, 2007) Passage of the measure was urged by Director Steve Warren in several op-eds published statewide.
Michael Fox was quoted in the Malaysian New Straits Times on concepts of disability.
One of the proudest accomplishments of the Life Span Institute and the University of Kansas was June 14, 1972, when Dick Schiefelbusch, KU and state officials hop-scotched across the state to cut ribbons on the three sites of the new Mental Retardation Research Center, starting in Parsons, on to Lawrence and ending at the Medical Center. That made the University of Kansas one of the original 12 designated national centers for mental retardation research that President John F. Kennedy had initiated before his death in 1963.
Forty years and many accomplishments later, Kansas still stands as one of the top research universities for the study of the prevention and treatment of intellectual and developmental disabilities, now as the Kansas Institute for Developmental and Intellectual Disabilities.
On April 19, Director Steve Warren and Co-Director Peter Smith reaffirmed and reviewed the 40-year bi-campus collaboration of 83 behavioral and biological researchers including affiliated researchers from the Kansas City-based Juniper Gardens Children's Project the Parsons Life Span Institute. Full story.
Several revolutionary interventions for education and behavior management were developed by early members of the MRDDRC. These included “time out,” perhaps the most widely used behavior management technique in the world, and the “good behavior game,” which is also widely used and has been described as a behavioral vaccine because of its power to prevent behavior problems.
Other techniques were developed early on to teach communication skills to children with moderate to severe retardation, to enhance the language development of at-risk preschool children and perhaps most important, to enhance the generalization and use of a wide range of newly taught skills and abilities.
MRDDRC research established techniques to treat severe aberrant behavior and to enhance the academic instruction of children at high-risk for mild mental retardation and school failure. Incidental language teaching, one of the most effective and widely used approaches to language intervention, was first conceived and tested by Betty Hart and Todd Risley. Their landmark study on the role of early parenting on the language development of young American children described in Meaningful Differences in the Experiences of Young American Children (1995) is still cited widely in the scientific world and by policymakers, pundits and the media.
MRDDRC investigators also did groundbreaking work on the implications of in-utero radiation;, heavy metal, alcohol, and cannabinoid exposure, the role of glutamate in neuro-degeneration and neuro-plasticity in response to intervention.
Pioneers in disability research and national figures in public policy, Ann and Rud Turnbull have been named the first Marianna and Ross Beach Distinguished Professors at the University of Kansas.
The professorships were established by Marianna and Ross Beach of Lawrence to assure permanent support of the leadership at the Beach Center on Disability. It is the first distinguished professorship for the Beach Center and the first for a faculty member in the Department of Special Education in the School of Education. The Beach Center is affiliated with the Department of Special Education and the Schiefelbusch Institute for Life Span Studies.
Ann and Rud Turnbull co-founded the Beach Center and have been co-directors since 1988. The center is named in honor of the Beaches in recognition of their long-standing efforts on behalf of families who are affected by disability. Full Story.
Dick Schiefelbusch was honored - again. The 88-year-old founding director of the Schiefelbusch Institute for Life Span Studies, was recognized with the 2007 Department of Special Education's Field Leadership Award.
Schiefelbusch, who is a Ph.D. in speech pathology, was recognized with the award at the April 20 Council for Exceptional Children conference in Louisville, Ky.
A reception also will be held at 4 p.m. May 16 on the Joseph R. Pearson Hall patio.
Schiefelbusch was instrumental in the development of the Department of Special Education, the Department of Applied Behavioral Science and the Learning Disabilities Institute, now known as the Center for Research on Learning.
Schiefelbusch is an ideal candidate for the award, said Christine Walther-Thomas, professor and chair of the Department of Special Education. "Richard Schiefelbusch has been a leading force on the KU campus for almost 60 years. His visionary leadership and relentless development efforts facilitated the development of a remarkable body of KU research about how children and adults learn and how effective educators teach. Countless children and adults, families, educators, researchers and policymakers have benefited from Dick's work. He has influenced the professional growth and research skills development of generations of new KU disability researchers."
This issue features a sampling of the innovative Life Span projects and programs that use and evaluate technology for research, training and direct service. LSI researchers are increasingly developing technological approaches to give Kansans – especially those living in low income urban and rural areas – increased access to life changing knowledge, training, products and services.
The ability of staff and administrators to monitor the development of children in Early Head Start programs in Kansas and Missouri has been made possible by an innovative web-based technology developed by Juniper Gardens Children’s Project researchers lead by JGCP Director Charles Greenwood and Jay Buzhardt. The Early Communication Indicator or ECI allows those on the front lines of child care – home visitors and daycare center workers – to record a child’s communication in six minutes, input the results on a web site and immediately see, for example, his or her progress in comparison to typically developing children, as well as peers in the local child care setting and with others in Early Head Start. A child’s individual progress can also be monitored after an intervention such as speech therapy. The ECI is just one of the Individual Growth and Development Indicators for Infants and Toddlers or IGDIs developed as part of a multi-university initiative.
Further, data accruing from this technology at population levels and poised to go national – allows the researchers to assess the technology’s effect on outcomes for children.
Greenwood and Buzhardt want to see if this kind of systematic progress monitoring made possible by the IGDI technology that allows the identification of developmental problems, their treatment, and assessment of the effectiveness of treatment, will accelerate positive outcomes for infants and children. The project is funded by the Office of Special Education.
Another question the researchers have posed is whether the ECI can predict later language and early literacy performance by age 4. This study, funded by the National Center for Special Education Research, will follow children in EHS home-based programs up to 48 months. Greenwood, Buzhardt and Dale Walker are conducting the study.
Autism is reaching epidemic levels according to many authorities. As with any developmental disorder, early, intensive and comprehensive intervention is of paramount importance. But the cost of these interventions keeps many children from benefiting them and some research as suggested that without them, nearly 90 percent of these children will require some type of residential placement as adults. JGCP’s Linda Heitzman-Powell and Jay Buzhardt have responded to this need by developing an innovative solution – face-to-face training for parents of children with autism via two-way audio-video community telemedicine (videoconferencing) sites and online tutorials.
Child neglect, the largest category of child maltreatment, is one of the most common but understudied threats to the normal development and well being of children. Judy Carta directs a study funded by the Centers for Disease Control that will use cell phones in a project aimed at teaching parenting skills to teenaged mothers who are high risk for abusing or neglecting their children. Maintaining young, low-income mothers’ participation in parenting programs has been notoriously difficult because they often move a lot, don’t have phone service and have unpredictable schedules. But if a young mother had a cell phone, the researchers reasoned, parenting project staff could check in with mothers, send text message reminders and, in general, reinforce positive parenting.
The project is part of larger multi-university longitudinal study on preventing child maltreatment that is following children from birth to three years in Kansas City and three other cities. Carta and Steven Warren co-direct the Kansas City program. Juniper Gardens Children’s Project researchers Kathryn Bigelow, project coordinator, and Jane Atwater and Jay Buzhardt also participate in the project.
Another JGCP study will examine whether or not the Internet can be an effective tool for improving parenting practices for families in rural areas. It has been shown that parents of infants living in poverty are at elevated risks for many detrimental outcomes such as learning problems, behavior problems and abuse. While research has shown it is possible to improve these outcomes with early interventions, rural areas suffer from an acute lack of mental health professionals that is reaching crisis proportions.
This pilot project, funded by the National Institute of Mental Health, will adapt and test an existing successful parenting program for delivery via the Internet via computers equipped with “eyeball” cameras supplemented with weekly professional contact for low-income Kansas and Oregon parents of infants 3.5 to 7 months of age at enrollment.
Parents in the intervention group will receive on-line social support from peers and professionals as well as video training sessions. This system will provide an opportunity to monitor outcomes and allow contact to remote locations.
The study is collaboration between JGCP researchers Kathleen Baggett, Judy Carta and Jay Buzhardt with University of Oregon Edward Feil, who directs the project, and Lauri Levites, Betsy Davis, and Lisa Sheeber. – Drew Rosdahl
The Beach Center on Disability’s Michael Wehmeyer has a broad interest in technology and directs a project that is examining what features of technology design meet and don’t meet the needs of people with intellectual disabilities as well as which emerging technologies could enhance community inclusion and workplace integration.
Wehmeyer, along with Beach Center researcher Susan Palmer and Sean Smith of KU’s Department of Special Education, are partnering with AbleLink Technologies, Inc. along with The Arc of the United States, Self-Advocate Coalition of Kansas, The Coleman Institute, the American Association of Intellectual and Developmental Disabilities and several other disability organizations on the national project funded by U.S. Department of Education.
Ironically, the promise of technology to enhance the quality of life of people with cognitive disabilities has gone largely unfulfilled because of design features, according to Wehmeyer. For example, such assistive devices as voice augmentation or motorized wheelchairs are often too complex for people with mental retardation to use. In the workplace, computers' complexity excludes employees with mental retardation from jobs they could otherwise perform. At home, unnecessarily complicated controls of such appliances as microwave ovens can prevent people with intellectual disabilities from cooking for themselves.
However, some emerging technologies show great potential for promoting the independence of people with cognitive disabilities. Individuals with cognitive disabilities often have difficulty with time management and retrieving information, Wehmeyer said. For example, partner AbleLink Technologies, has developed a Pocket Ace, a cell phone technology built on a PDA platform, to support people with limited abilities and memory to make and receive phone calls.
Through conferences, national surveys and focused interviews with disability experts, technology developers and people with mental retardation and their families, the project is determining the state of technology for people with mental retardation.
The success stories of families and professionals working together to improve the quality of life of a child with a disability will be told via multi-media through a new online project launched by the Beach Center on Disability.
Parents of babies and toddlers with such disabilities as autism, Jubert Syndrome, and hydrocephalus share their perspectives alongside those of speech-language pathologists and early childhood educators in stories featured on the Beach Center website. Beginning in May, the stories will be augmented by video and audio clips of the parents and professionals along with photographs and other artifacts, such as team meeting notes and recommendations. Also included will be matrixes of what worked, tips for professionals and family members, and a list of resources for families facing a similar situation.
The “Family Outcomes” project is the first foray by the Beach Center into multi-media online journalism. The Beach Center hopes to expand the initiative by early summer to include dozens of stories of families across the country with accompanying videos. Those stories are being developed through a collaborative effort between the Beach Center and students in a “Diversity and the Media” class taught by Barbara Barnett in the KU School of Journalism.
While the Beach Center has featured “real stories” ever since its site was launched, it is seeking more innovative ways to tell the stories of families and their partners. The multi-media project will ultimately be available on the Beach Center’s main website and on a linked Community of Practice site, which will enable visitors to discuss the stories in a blog-like format and post their own documents and artifacts. Read one of the stories already posted. - Mary Margaret Simpson
The Assistive Technology for Kansans Project, directed by Parsons Life Span Institute’s Sara Sack, is all about getting assistive technology to help Kansans be more independent and productive and to help children with disabilities learn and even play. Assistive Technology is any device or service that helps persons with disabilities or limiting conditions to live or work more independently - literally thousands of products, adapted items and services, ranging from simple adapted utensils and recreation items to durable medical equipment and the most sophisticated adapted computer systems. An Advisory Council of individuals with disabilities, family members and representatives guides the project from Kansas agencies.
Sack, along with Sheila Simmons and recently retired Charles Spellman, have helped build a model infrastructure in Kansas that includes centers in Oakley, Salina, Wichita, Lawrence and Parsons and an assistive technology loan cooperative, equipment loan bank, equipment consignment and reuse system, and a rehabilitation program for farmers injured in agriculture-related accidents. Most services can be initially accessed through 1-800-KAN-DO-IT.
ATK organized the Assistive Technology Expo ’07 on April 17 and 18 at the Kansas Expocentre in Topeka. The event featured the state’s largest exhibition of products and services for children, adults and seniors with disabilities and chronic health conditions and workshops for parents, educators, case managers and family members.
Sack presented two new federal initiatives that the ATK is undertaking in Kansas at the conference. Kansas will be one of 12 states to conduct a special demonstration project on reutilization of assistive technology. Working with the original manufacturers of handheld electronic devices, also known as personal digital assistant or converged mobile navigational devices, the project will reutilize and refurbish such devices for people with intellectual disabilities who can benefit from the navigational and organizational technology. Sack added that this initiative recognized the ATK’s success with the Kansas Equipment Exchange (KEE) project that in 3 years has brought in $1.3 million of durable medical equipment such as electric hospital beds and wheelchairs that were no longer being used. $1.1 million has been redistributed back out to Kansans at no cost. Of that equipment 94 percent had been purchased with private funding.
The second initiative is to create a state directory of all Kansas organizations and programs that have access to, give or loan such equipment to be able to quickly respond to a state, regional or national disaster such as Hurricane Katrina.
We are saddened to announce that our dear friend and colleague, Betty Smith, passed away Saturday, March 24th. Over 42 years ago, Betty began her career at Juniper Gardens Children’s Project, an affiliate of the University of Kansas’ Schiefelbusch Institute for Life Span Studies, when R. Vance Hall, was director. Betty has been a fundamental person in the success of Juniper Gardens, and during her tenure she has touched the lives of so many and Betty will be sorely missed.
The Schiefelbusch Institute for Life Span Studies announces a call for proposals for the Friends of LSI Pilot Discovery Grant Awards. These awards are an internal grant mechanism available to KU investigators who are associated with the Life Span Institute. The purpose is to encourage LSI researchers to conduct multidisciplinary, innovative pre-clinical or clinical pilot studies in preparation for submitting competitive grant applications to federal agencies or substantial applications to private foundations. This initiative is made possible by the generous gifts of members of the Friends of the Life Span Institute.
This competition is open to Life Span Institute faculty/faculty equivalent Investigators including Ph.D. level research associates conducting pilot projects directly relevant to the mission of the LSI mission (i.e. creating solutions to the problems of human and community development, disability, and aging.
Applications are due to Jessica Black by 5 p.m. on June 1, 2007. Applications submitted after that date will not be considered. Applicants must submit an electronic version of their application and one hard copy to Jessica in the LSI central office (1000 Sunnyside, Room 1052). Award decisions will be made by October 1.
Questions regarding procedures should be directed to the Committee Executive Secretary, Jessica Black at phone ext. 864-0597 or e-mail at firstname.lastname@example.org; substantive questions regarding research priorities should be referred to the LSI Director, Steven Warren at 864-4295 or email@example.com.
May 11 3:30-5:00 Factorial Invariance and Developmental Change Measurement: Another Gander at the Goose that Laid the Golden Egg
Open Forum Discussion of John Nesselroade’s Distinguished Contributions to Psychology
This semester we have been reading selected contributions by John Nesselroade to the field quantitative psychology. We’ll meet to discuss and probe the ideas and future directions based on this work. All are welcome to participate, even if you’ve not read his works.
Date: May 11, 2007
New Awards (not previously funded) Information
1. Amy McCart received a new, eight-month subcontract “Using Technology to Facilitate District and Building-Level Reading/Literacy and Behavioral Outcomes for Students across Kansa” from the NE Kansas Education Service Center, prime contractor to Kan-ed, that began November 1, 2006.
2. Joseph Donnelly received a new, one-year subcontract “A Psychiatric Rehabilitation Approach to Weight Loss” from KUMC (Cantana Brown, PI) prime contractor to NIMH, that began January 1, 2007.
3. Kendra Williams-Diehm received a new, six-month subcontract “Rocket Reader: A Simplified PDA-based Portable Reading System for Enabling Access to Audio Books and Electronic Documents for Individuals with Intellectual Disabilites” from AbleLink Technologies, prime contractor to DE-IES, that began January 10, 2007.
We have been unofficially notified regarding over a dozen newly funded projects that we hope to be able to announce in the next issue.
Past Submissions not Previously Reported
1. Susan Kemper submitted her third-year, progress report “Dual Task Costs to Adults’ Language Production” to NIA on April 1, 2007.
2. Michael Vitevitch submitted his fourth-year, progress report “Processing Neighbors in Speech Perception and Production” to NIDCD on April 1, 2007.
3. Dean Williams submitted his third-year, progress report “Laboratory Models of Maladaptive Escape Behavior” to NICHD on April 1, 2007.
4. Hugh Catts and Susan Adlof submitted a new, two-year F31 “Morphosyntactic Skills of Poor Comprehenders” to NIH on April 8, 2007.
5. Howard Wills, Debra Kamps and Charles Greenwood submitted their fourth-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 April 13, 2007.
6. Michael Fox and Glen White submitted a new, five-year subcontract “Rehabilitation Engineering Research Center: Emergency Management Technologies for Individuals with Disabilities” to the University of Illinois, prime contractor to DE-OSERS-NIDRR, on April 13, 2007.
7. Glen White and Michael Fox submitted a new, five-year subcontract “Barriers to Emergency Management Services for People with Disabilities or Chronic Disease” to the University of New Mexico, prime contractor to AUCD, on April 13, 2007.
8. Ann Turnbull submitted a new, five-year subcontract “National Early Childhood Training Enhancement Center” to the University of North Carolina, prime contractor to DE, on April 13, 2007.
9. Nancy Brady and Susan Bashinski submitted their fifth-year, grant performance report “Promoting Communication Outcomes for Children with Deaf-Blindness through Adaptive Prelinguistic Strategies” to DE/OSERS/OSEP on April 13, 2007.
10. Janet Marquis submitted a new, seven-month subcontract “Data Analysis for Context and Student Characteristics that Impact Schools’ AYP Status” to the University of South Florida, prime contractor to DE-OSERS-OSEP, on April 16, 2007.
11. Kathleen Baggett submitted her second-year continuation contract “Infant-Net” to the Oregon Research Institute, prime contractor to NIMH, on April 18, 2007.
12. Steve Warren and Nancy Brady submitted their fifth-year, progress report “Family Adaptation to Fragile X Syndrome” via the University of North Carolina, prime contractor to NICHD, on April 20, 2007.
13. Chris Smith submitted a new thirteen-month proposal “Kansas Early Head Start Comprehensive Evaluation Contract” to Kansas SRS on April 27, 2007.
14. Charles Greenwood and Jay Buzhardt submitted their second-year, grant performance report “Effects of Progress Monitoring by National Web-based Technology on the Intervention Results of Infants with/without Disabilities Ages Birth to Three” to DE-OSERS-OSEP on April 27, 2007.
15. Charles Greenwood and Barbara Terry submitted their fourth-year, grant performance report “Post-Doctoral Leadership Training Program in Intervention Research for Culturally/Linguistically Diverse Students with Disabilities” to DE/OSERS/OSEP on April 30, 2007.
16. Jane Wegner submitted her fourth-year, grant performance report “Augmentative and Alternative Communication in the Schools: Leadership and Access (ACTS)” to DE/OSERS/OSEP on April 30, 2007.
17. Steve Warren and Peter Smith submitted their forty-first year, progress report “Kansas Intellectual and Developmental Disabilities Research Center (KIDDRC)” to NICHD on May 1, 2007.
18. Joe Donnelly, Bryan Smith, Richard Washburn, Debra Sullivan, Cheryl Gibson and Matthew Mayo submitted their eighth-year progress report “Long-Term Exercise, Weight Loss and Energy Balance” to NIDDK on May 1, 2007.
19. Katherine Froehlich-Grobe and Lauren Aaronson (KU Medical Center) submitted their third-year, progress report “A Randomized Exercise Trial for Wheelchair Users” to NICHD on May 1, 2007.
20. Kathryn Saunders submitted his second-year progress report “Recombinative Generalization of Within-syllable Unites in MR” to NICHD on May 1, 2007.
1. Judith Carta will submit a new, five-year contract “Technical Assistance Center for Evidence-based Practices to Improve the Social-Emotional Development of Young Children with or at Risk of Disabilities” to University of South Florida, prime contractor to DE-OSERS-OSEP on May 7, 2007.
2. Stephen Fawcett and Jerry Schultz will submit a new, four-year proposal “KU Center of Excellence for the Elimination of Disparities”to HHS-CDC on May 7, 2007.
3. Dale Walker and Steven Warren will submit a new, four-year proposal “Center for Promoting Language and Literacy Readiness in Early Childhood” to DE-OSERS-OSEP on May 7, 2007.