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Fall 2005

Remember to Save the Date for the LSI 50 th Anniversary Celebration September 29 and 30, 2006!

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

The Friends of the Life Span Institute are Ross and Marianna Beach, Michael Cataldo, 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.

Fall 2005 Issue 88

Editor, Karen Henry kahenry@ku.edu

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

Back issues at LSI web site

Contents

Research and Training Center on Independent Living tapped for Hurricane Katrina project

Research and Training Center on Independent Living mark 25 years

Governor Sebelius appoints Horn to Kansas Coordinating Council on Early Childhood Developmental Services; Lindeman becomes Council Regents Representative

Sack honored by peers with KSHA Special Service Award

Warren appointed to Gatilinburg Conference Executive Committee

Wehmeyer appointed editor-in-chief of Remedial and Special Education

Froehlich Grobe joins Life Span Institute

Smith joins Life Span Institute at Parsons

Major upgrade in biobehavioral measurement in Transgenic and Knockout Mouse (TAKOM) Facility

Life Span scientists help represent Kansas at first Summit of the Alliance for Full Participation

Focus on Research: Promoting Generalized Social Communication Outcomes for Children with Autism

Institute Activities

Central Office News: Project Development

Life Span in the News

The success of positive behavior support on a school-wide basis as directed by Life Span's Amy McCart and Wayne Sailor was credited with helping change school culture and pave the way for remarkable gains in academic achievement at two Kansas City schools on the front page of the November 1 Kansas City Star http://www.kansascity.com/mld/kansascity/13048012.htm . McCart is Assistant Research Professor and Sailor is Professor of Special Education and Co-Associate Director at the Beach Center on Disability.

The Research and Training Center on Independent Living's new Hurricane Katrina-related project was covered in the Kansas City Star http://www.kansascity.com/mld/kansascity/news/12907508.htm, the Belleville (Illinois) News-Democrat and on KATC Channel 3 in Acadiana, Louisiana http://www.katc.com/Global/story.asp?S=3985064.

Ann Turnbull, Co-Director of the Beach Center on Disability, was interviewed for a story about parent to parent support groups for families with children who have disabilities in the September 21 Chicago Tribune. The Beach Center did a large scale study of such groups that was published in the Journal of Early Intervention in 1997. http://www.beachcenter.org/Research/FullArticles/PDF/PP3_Parent%20-to-Parent%20Programs.pdf

Research and Training Center on Independent Living tapped for Hurricane Katrina project

The Research and Training Center on Independent Living (RTC/IL) recently was tapped by the National Institute on Disability and Rehabilitation Research to assess the impact of Hurricanes Katrina and Rita on persons with disabilities with a one-year $162,000 grant.

A KU research group, which has investigated how people with mobility and other disabilities fare in disasters in previous research, will examine the experiences of emergency managers and the staffs of centers for independent living in meeting the needs of people with disabilities before, during and after the recent storm-related disasters.

Centers for Independent Living (CILs), like Lawrence's Independence, Inc., are non-residential, private, non-profit organizations that provide core services and advocate for persons with all types of disabilities on issues such as access to housing, employment, transportation, health and social services.

“CILs are typically not prepared to offer emergency service and relief,” said White, “but now many centers in Gulf Coast states find themselves in that role and are overwhelmed trying to provide services for thousands of Katrina evacuees,” said Glen White, RTC/IL director.

“The goal of this study is to collect empirical data that will guide future policies regarding disaster preparedness and emergency response for people with disabilities,” said White.

The RTC/IL is completing its earlier grant, the Nobody Left Behind study, that investigated a random sample of 30 U.S. federal disaster sites to determine if disaster plans and emergency response systems included the needs of persons with mobility impairments.

A series of reports from this study will be released beginning in October at http://rtcil.org/findings.htm.

Archives of the experiences of survivors with mobility limitations are at http://www.nobodyleftbehind2.org/ .

White will co-direct the Hurricane Katrina study with Michael Fox, associate professor of health policy and management, and Tony Cahill, director of the Center For Development and Disability at the University of New Mexico.

Research and Training Center on Independent Living mark 25 years

A KU research group that was just tapped by the Federal government to investigate how people with disabilities fared during and after Hurricane Katrina, marked its 25 th anniversary October 22 with a free public panel discussion at the Dole Institute of Politics in Lawrence from 2:30 to 4:30 p.m.

The Research and Training Center on Independent Living (RTC/IL), directed by Glen W. White since 2002, and for the previous 22 years by James F. Budde, has built an international reputation as one of the few academic research groups on the independence of people with disabilities. Since its inception, the Center has received grants and contracts totaling more than $10 million.

Budde first became a convert to what is called IL, or independent living, in 1978 when a state legislator asked him to find a home and other services so that a young woman with quadriplegia could live independently.

At that time, people with disabilities often had two choices: being dependent on family members or living in a nursing home.

But Budde had heard of a group of people with severe disabilities who were making their own choices and demanding access to classes, employment, housing, transportation, and stores at the first Independent Living Center in Berkeley, California.

Budde came back to Lawrence with a mission. That same year, he helped establish Independence, Inc., a Lawrence-based service coordination and referral center for people with disabilities.

Fresh from that success, Budde, and others in the KU and disability communities, applied for and won a competitive grant to establish the RTC/IL in 1980, funded by what is now called National Institute on Disability and Rehabilitation Research.

The Independent Living epiphany that was exploding beliefs about disability all over the country had come to Kansas.

“Consumer control—that individuals with disabilities are to be treated as consumers of services and control their own lives—was and is the cornerstone of our mission,” said Budde.

Two notable RTC/IL contributions to this are the No Know Way Guide that explains how to understand and use research and the Get RIIL (Research Information for Independent Living) Web site at http://www.getriil.org/ that has more than 800 reviews of disability research articles written for the layperson on topics such as legal rights, housing, transportation, and transitioning from schools and nursing homes.

The RTC/IL has influenced public policy through developing national standards for independent living centers and influenced public perception of people with disabilities through its million-seller, Guidelines for Reporting and Writing about People with Disabilities, parts of which have been incorporated in a standard reference for journalists.

The RTC/IL has trained disability researchers, teachers and policymakers from across the U.S. and around the globe through its junior colleague model where graduate students from diverse disciplines work on Center research teams.

Some stay, as did Glen White, the first scholarship recipient of the Independent Leadership Training Program, now the director of the RTC/IL and professor of Applied Behavioral Science.

White, a behavioral scientist, uses a wheelchair, and knows firsthand that even with the sweeping mandate of Americans with Disabilities Act in 1990, researchers have had to show, through research as well as advocacy, exactly what it takes for people with disabilities to live independently.

In fact, if you use a wheelchair, you can thank White for being able to have accessible bathrooms at Kansas City International Airport or simply get to your office or classroom in KU's Dole Human Development Center, where the RTC/IL is located.

While many people with physical disabilities have realized independence in the last decade since ADA, much more needs to be known about how to serve people in developing countries, as well as minority and rural communities in this country, and, according to White, the RTC/IL is well prepared.

“Our research group is as diverse as any anywhere,” he said, “we live it.”

One of White's recent master's degree graduates, Hoang-Yen Thi Vo, one of the first three Ford Fellows from Vietnam who was barred from employment in her country is living it: she is developing the first Independent Living Center in Vietnam.

Governor Sebelius appoints Horn to Kansas Coordinating Council on Early Childhood Developmental Services; Lindeman becomes Council Regents Representative

Governor Kathleen Sebelius announced the appointment of six new members to the Kansas Coordinating Council on Early Childhood Developmental Services on November 21 st , including Eva Horn, Professor of Special Education and LSI investigator.

Horn was appointed to serve a four-year term ending July 31, 2009. Horn directs a KU study on children's school success that is part of a $4.5 million DOE-funded multi-site study of 600 at-risk children lead by the University of Indiana with Purdue University, San Francisco State University and the University of Maryland and KU.

David Lindeman, director of the Life Span Institute at Parsons, who was originally appointed to the Council in 1999 and reappointed in 2003, became a Regents Representative on the Council this year.

The Kansas Coordinating Council on Early Childhood Developmental Service, established by federal regulation and State statute, advises and assists state government in matters pertaining to preschool children with (or at risk of) developmental delays/disabilities. The Council serves in this advisory role to the two lead agencies responsible for administering Part C of IDEA (KDHE) and Part B of IDEA (KSDE). The Council is comprised of cabinet secretaries, legislators, and the Governor's appointees.

Sack honored by peers with KSHA Special Service Award

The Kansas Speech-Language-Hearing Association (KSHA) presented Sara Sack, LSI Parsons Associate Scientist with the Special Service Award at their statewide conference in Overland Park September 29-October 1. This award is given to individuals who are well known throughout the nation and the world for innovative clinical practice, insightful and rigorous research, creative administration, effective legislative activity, outstanding teaching, or other distinguished professional contribution.

The KSHA Connection cited some of Sara's career achievements:

Director of seven federal projects and four state programs that serve Kansans of all ages, disabilities, and health conditions. As the director of the statewide assistive technology program, Assistive Technology for Kansans (ATK), Sara collaborated with over 60 state agency and organization representatives and over 600 consumers to determine the AT needs of Kansans with disabilities and identify necessary program components to meet these needs. In the past twelve years, ATK has maintained five regional AT Access Sites that provide a full range of AT services, a short term equipment loan system, and continued to identify barriers and develop solutions so individuals can access assistive technology devices and service needed to continue to learn, work and live independently.

Current Federal Projects: AT for Kansans Program, Kansas Alternative Finance Program, Access for Telework Program, AT Services to Support Transition of Students with Mental Retardation from Institutions, Kansas Community Personal Assistance Services and Supports Project, Reusing AT/Durable Medical Equipment, Kansas AgrAbility Program.

Current State Programs: Employment-Related AT Services for Persons with Disabilities, AT Services for Infants and Toddlers, Targeted Case Management – AT, Kansas Equipment Exchange Program (recognized as a national model by the Assistant Secretary of the Dept. of Education and is being considered in seven other states.)

Sara's efforts in educating policy-makers and advocating for the needs of persons with disabilities were integral in the Passage of the Kansas AT Lemon Law to cover all devices for one year after their purchase, coverage of augmentative communication systems for children and adults by Kansas Medicaid, coverage of AT devices on the Medicaid HCBS Waivers, revision of the HCBS MR/DD Waiver, definitions to increase choice and self-directed service options for persons with developmental disabilities, and passage of the AT Act of 2004, for which she provided testimony to the U.S. Congress.

A quote from one of Sara's colleagues reads: “I know of no other individual who is truly an ambassador for both Kansans with disabilities and the profession of Communication Disorders and Sciences.”

The President of KSHA, Heidi Daley, presented the award and commended Sack for her service on behalf of persons with disabilities throughout the state and nation.

Warren appointed to Gatlinburg Conference Executive Committee

Steve Warren, Director of the Life Span Institute and the Mental Retardation Developmental Disabilities Research Center and Professor of Applied Behavioral Science, was appointed to the Gatlinburg Conference Executive Committee for a five-year appointment.

This committee plans the annual Gatlinburg Conference on Research and Theory in Intellectual and Developmental Disabilities, arguably one of the most prestigious conferences in the United States “for behavioral scientists who conduct research in intellectual and related developmental disabilities.” The theme for the 2006 Conference is "Risk & Protective Factors in Developmental Disabilities: The Role of Environment and Culture." The Conference will be held Wednesday, March 15 to Friday, March 17, 2006 at the Westgate Hotel, San Diego.

Warren holds numerous leadership positions in the field of developmental disabilities research and administration and is widely acknowledged for his contributions to understanding early communication and developing innovative language intervention approaches.

The Gatlinburg Conference web site is at: http://www.waisman.wisc.edu/gatlinburg/index.html.

Wehmeyer appointed editor-in-chief of Remedial and Special Education

Michael Wehmeyer, Kansas University Center on Developmental Disabilities Director, Beach Center on Disability Associate Director, and Professor of Special Education, has been appointed editor-in-chief of Remedial and Special Education, a major scholarly journal whose stated scope is interdisciplinary scholarship that bridges the gap between theory and practice on the education of individuals for whom typical instruction is not effective.

Wehmeyer is particularly known in the disability research arena for demonstrating the validity of the concept of self-determination—that people with intellectual disabilities could and should determine how they live their lives. He is also noted for his research in teaching children with severe, multiple disabilities and the use of technology by people with intellectual disabilities.

Froehlich-Grobe joins Life Span Institute

Katherine Froehlich-Grobe will join the Life Span Institute on January 1 as a Research Assistant Professor. Froehlich-Grobe is the principal investigator of a new five-year $ 1.5 million NIH-funded randomized exercise trial for wheelchair users and is a co-investigator on several other grants.

Froehlich-Grobe is currently Assistant Professor with the Kansas University Medical Center Occupational Therapy Education Department and was previously Project Coordinator with the Research and Training Center on Independent Living at the LSI.

"We are delighted to welcome Katherine back to LSI. She is a proven young scholar whose interests overlap with several LSI centers,” said Steve Warren, LSI Director.

Froehlich-Grobe is a behavioral scientist whose interests lie in health promotion and intervention for people with disabilities, a group that has a higher risk for health problems such as obesity, diabetes and high blood pressure.

Froehlich-Grobe's new grant will test the effects of a behavior change approach for increasing physical activity in 180 manual wheelchair users.

Smith joins Life Span Institute at Parsons

The Life Span Institute at Parsons has appointed Christopher Smith, Ph.D., to the position of Assistant Scientist in September. Smith has roots in southeast Kansas and has been at the Parsons site for the past few years. He is a graduate of KU's Special Education program and has worked with Professors Tom Skirtic and Wayne Sailor.

Currently, Smith has grant projects focusing on training with community agencies in the development of continuous improvement systems and projects that focus on program evaluation and improvement in quality of services. His contract with the Kansas Head Start Association has been undertaken as a final phase to a previous contract with the Kansas Association of Community Action Programs. All of the work has focused on providing workshops and training to direct support and administrative staff regarding integrated outcomes for children and families.

Life Span scientists help represent Kansas at first Summit of the Alliance for Full Participation

Susan Palmer, Assistant Research Professor, Beach Center on Disability

On September 22 and 23, 2005, close to 2,400 people attended the first Summit of the Alliance for Full Participation. The meeting rooms and exhibit hall were filled to capacity. Keynote speakers included Roger Nierenberg, a symphony conductor speaking on leadership, Martin Luther King, III, talking about community membership, Margaret Wheatly on enhancing supports and services, and Fred Palmer, who spoke about health disparities. This summit on disability issues brought together people with disabilities, their family members, and people who work with and for individuals with disabilities to form a partnership that declares, “We want dignity and respect for all. We want full participation for all”.

People from eleven national disability organizations met before, during, or after the Alliance summit. Individuals with disabilities who advocate for themselves for a good quality of life were a prominent part of the activities. We asked several members of the Self-Advocate Coalition of Kansas who attended the Alliance meeting for their opinions. One person said that it was a good meeting, the sessions were good, and one keynote presentation was especially important because the speaker asked his sister with disabilities what she really wanted to do, instead of telling her. Another self-advocate especially liked the self-advocate lounge, where people with disabilities could meet other peers and enjoy a social time together without support staff or family. It was a busy meeting with a variety of choices of sessions to attend, and a time to visit and meet the people from all areas of the country to talk about common concerns and possible solutions to improve the quality of life for persons with a disability.

People from the Life Span Institute who attended the meeting include Steve Warren, Anne Turnbull, Rud Turnbull, Michael Wehmeyer, Denise Poston, Susan Palmer and Matt Stowe.

Several Beach Center Researchers Present at Summit

Mary Margaret Simpson, Editor, Beach Center on Disability

Researchers at the Beach Center participated in a historic conference sponsored by the Alliance for Full Participation September 22-23 in Washington, D.C.

Summit 2005 represented one of the largest gatherings ever of advocates, families, service providers, researchers, public policy experts, and leaders in the disability field. Participation by Beach Center staff included the following:

Ann Turnbull moderated a breakout session entitled “Individual Control of Budgets, Supports, and Services for Individuals with Significant Intellectual Disabilities: Supporting Families to Support Their Family Member.” Also participating were Denise Poston, research associate, and Matt Stowe, research assistant professor

Associate Director Michael Wehmeyer co-chaired the Kansas delegation and present on two panels, one on the future of research and the other on technology use.

Nina Zuna, doctoral student, and Denise Poston presented their research on community integration and in a poster session.

Karrie Shogren, doctoral student, participated in a panel on health disparities and people with intellectual and development disabilities. She also will receive the AAMR's Outstanding Student Award on September 20 at a special AAMR awards reception.

Matt Stowe, Suzanne Schrandt, research associate, and Jennifer Rack, doctoral student, presented research on the disability community's perspectives on the Human Genome Project, trends affecting perceptions and attitudes towards disability, and the implications for disability policy and advocacy.

Susan Palmer, research assistant professor, attended as part of the Kansas delegation.

The Beach Center was one of five organizations sponsoring a special meeting on Medicaid and individual/family control of funding during the Summit 2005 conference.

Co-sponsored by The Arc, the American Association on Mental Retardation, and the Kansas and North Carolina Developmental Disabilities Planning Councils, the meeting was designed to solicit information on past, current, and future activities related to individual/family control. The session preceded a Medicaid plenary session scheduled for the previous day.

The Beach Center plans to develop a national Community of Action on individual/family control issues.

Major upgrade in biobehavioral measurement part of upcoming Transgenic and Knockout Mouse (TAKOM) Facility

Jonathan Pinkston, Assistant Research Professor

A current project is in the works to expand mouse biobehavioral measurement capabilities available to investigators. The second floor of Malott Hall will be undergoing renovations over the next year. The end result of these renovations will be a new research facility. This facility will contain laboratories for the creation of knockout and transgenic mice for pathology, histology, and biobehavioral measurement. The Biobehavioral Measurement Core of the Mental Retardation and Developmental Disabilities Resource Center will run and maintain the 1600 square-foot biobehavioral laboratory.

The site will provide a set of four force-plate acotometers (developed by LSI investigator Steven Fowler) for the measurement of a wide variety of behaviors, such as general activity or muscle tremor. Also in the domain of motor function, a variable-speed rotorod apparatus will be available as well. The facility will also offer 6 mouse operant chambers, an 8-arm radial maze, and a T-maze for the examination of performance on complex learning and cognitive tasks.

Previous research with transgenic and mutated mice has provided invaluable information about the etiology and progression of a wide array of genetic and developmental diseases (e.g., Fragile X Syndrome, Down Syndrome, Huntington's Disease).

The addition of this research facility will contribute to the LSI's ability to add to this growing body of knowledge. Additionally, this facility should foster collaboration among researchers across various disciplines. Molecular biologists and pharmacologists, for example, could use such facilities to fully examine the behavioral outcome of a single-gene manipulation on responsiveness to drug administration. Biologists and psychologists will have opportunities to study differences in learning or developmental changes produced by genetic alterations. Such examples illustrate only a fraction of possibilities of interdisciplinary work that will be made possible by this new research.

Editor's Note: The Rodent Behavior Assessment Facility is part of the $2,000,000 5,590-square-foot TAKOM Facility. When completed, this renovation project will consolidate the major components of the Lawrence campus's transgenic and knockout mouse research efforts into one secure suite of rooms within the KU-L AALAC-accredited animal care unit.

Focus on Research: Promoting Generalized Social Communication Outcomes for Children with Autism

Editor's Note: Kathy Thiemann, Ph.D., SLP-CCC, was the principal investigator of this successful three-year OSERS-funded project that developed an urgently needed, cost-effective, easily replicable program to promote the communication of children with Autism spectrum disorders.

On November 5, close to 140 teachers, speech-language pathologists, school counselors, and others from Kansas City area schools, packed the Reginer auditorium of KU's Edward Campus to hear Kathy Thiemann, Assistant Research Professor, talk about how to improve the social lives of kids.

But not just any kids, kids with autism spectrum disorders (ASD) who often have significant and pervasive problems with playing, social behavior, and social communication that become more isolating as they get older. It has been improving the social communication of children with ASD to which Thiemann has devoted the last three years through a Department of Education grant, Promoting Generalized Social Communication Outcomes for Children with Autism: Effects of a Multi-Component Intervention Inclusive School and Home Settings.

Thiemann, a Juniper Gardens Children's Project investigator, who is also a speech-language pathologist, has shown that children with ASD can learn social communication in natural school peer groups with very little investment of school staff time or material resources.

Thiemann based what she terms this “peer-mediated intervention” on the communication of typical children. She identified six social communication goals that could be modeled, learned and reinforced: getting another person's attention, commenting, getting objects or information, talking about taking turns, making suggestions, and social niceties – things like compliments and encouragement.

Over the three years, 14 children with ASD aged 5 to 12 years took part in the study in Greater Kansas City area elementary schools. Their social and communication skills were assessed by use of direct observation in typical school settings, standardized tests (e.g., Social Skills Rating System, Vineland Adaptive Behavior Scales) and researcher-developed tools (e.g., Social Interaction Teacher Impression Scale – Classroom; Social Network Questionnaire – Parents). These children each became members of groups of 4 to 6 typical peers who were recruited and trained to support their social communication during group activities such as board games and recess. The groups met 2 to 3 times a week, twice a day, for 3 to 4 months. An adult taught and prompted the child at first, and would then fade out. While SLPs often took this role during the research project, Thiemann designed the program so that school employees such as paraprofessionals could perform this function.

At the three-hour teacher workshop, Thiemann focused on how to help children with ASD become more competent social communicators. In short, how they need to be taught functional language skills that they can use to communicate with peers across the school day. A critical piece of the intervention is to prompt social communication in natural school environments, according to Thiemann. “This leads to multiple practice opportunities, natural peer reinforcement and feedback, and ultimately generalization of skills across social settings,” she said.

Thiemann acknowledges that scheduling and guiding these social opportunities across the day initially takes some creativity and flexibility. She says that once these are set up, however, school staff report that the peers ‘take over', and become more independent and organized in inviting the focus child to interact in the classroom, on the playground, and in the lunch room—which in turn leads to less adult involvement.

Another key to the success of Thiemann's study was the use “scripts” - written text and other visual cues to prompt and reinforce the child's social communication. The scripts are short phrases such as, “You can go first” or “Good try”, from which a child can choose during the peer group activity. The scripts can be on cards, easels, erasable boards or even lanyards—to help kids when they are outside on the playground, at PE, or other unstructured social times. Peer children also learn the scripts and use them over and over to model appropriate social language. Eventually, these visual “props” are also faded out.

Taking a collaborative approach, Thiemann and her research team successfully trained special education teachers, paraprofessionals, a resource room teacher, and speech-language pathologists to effectively implement the peer-mediated intervention and the direct teaching strategies using scripted cues.

The results were extremely positive: all 14 children involved demonstrated marked increases in use of up to three different social communication skills with peers in natural contexts. Some children doubled, while others tripled their rates of targeted communication skills (both initiating and responding to peers). Other secondary positive language effects included longer sentences, use of more novel vocabulary, increased number of turns taken to maintain conversational topics, more conversational topics initiated, and a decrease in inappropriate social behaviors that previously interfered with successful peer interactions.

Thiemann points out that positive “social validity” outcomes supported the effectiveness of these strategies. That is, teachers, parents, peers, and individuals unfamiliar with the project goals reported improvements in the overall quality and quantity of interactions between the children with ASD and their peers. For example, a paraprofessional remarked that one child had increased his social skills so much that it was sometimes hard to believe that it was the same student and a principal noted that, “During my interactions with students I could notice a change in their conversations, particularly their responses to me. Peers who were involved in the program also appeared to enjoy the experience. I noticed several of them carrying their relationship over to other areas of the school such as the lunchroom.”

Thiemann's workshop was supported by the parent-led group, the Autism Society of Johnson County, Kansas. Thiemann is planning a second Parent Workshop on Strategies to Enhance Peer Interactions for Children with ASD in January or February. For more information: thiemann@ku.edu 913-321-3143 ext. 234.

Institute Activities

Honors

Rud Turnbull has been appointed to a special advisory committee of the Kansas Judicial Council that will advise the council and the Kansas legislature on possible amendments to Kansas guardianship statues concerning life-sustaining treatment and end-of-life issues.

Glen White was asked to serve as Special Editor of the Journal of Disability Policy Studies. Special issue on “Disaster Preparedness and Emergency Response for People with Disabilities”

At the Southwest Conference on Disabilities in Albuquerque, NM, Glen White received an inaugural award, National Distinguished Award for Outstanding Research on Disability

At the Association for Programs in Rural Independent Living in Honolulu, Hawaii, Glen White received an award from the Municipality of San Isidro, Peru for “Outstanding Contributions to Enhancing the Accessibility of San Isidro for People with Disabilities.”

Publications

Mellstrom, B. P., Saunders , M. D., Saunders , R. R., & Olswang, L. B. (2005). Interaction of behavioral state and microswitch use in individuals with profound multiple impairments. Journal of Developmental and Physical Disabilities, 17, 35-53.

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

Shogren , K. A., & Rye, M. S. (2005). Religion and people with intellectual disabilities: A study of self-reported perspectives. Journal of Religion, Disability, and Health, 9(1), 29-53.

Storkel, H.L., and Maekawa, J. (2005). A comparison of homonym and novel word learning: The role of phonotactic probability and word frequency. Journal of Child Language, 32.

Hoover, J.R., & Storkel, H.L. (2005). Understanding of work learning by preschool children: Insights from multiple tasks, stimulus characteristics, and error analysis. Perspectives on Language Learning and Education. (ASHA Division 1 Newsletter).

Smith-Bird, E., & Turnbull , A.P. (2005). Linking positive support outcomes to family quality of life outcomes. Journal of Positive Behavioral Interventions, 7(3), 174-180.

Turnbull , H.R., Stowe , M.J., & Huerta, N. E. (2005). The Individuals with Disabilities Education Act as amended in 2004 . Columbus, OH: Merrill/Prentice Hall.

Umbarger, G.T., Stowe , M.J., & Turnbull , H.R. (2005). The core concepts of health policy affecting families who have children with disabilities. Journal of Disability Policy Studies, 25 (4), 201-208.

Summers , J.A., Hoffman, L., Marquis , J., Turnbull , A., Poston , D., & Lord Nelson, L. (2005). Measuring the quality of family-professional partnerships in special education services. Exceptional Children, 72(1), 65-81.

Turnbull , A.P., & Turnbull , H.R. (2005). Parent-professional relationships. In M.E. Snell & F. Brown (Eds.). Instruction of students with severe disabilities (6 th ed.). Upper Saddle River, NJ: Merrill/Prentice Hall.

Obiakor, F.E., Wilder, L., Grant, P., Bakken, J., Obi, S.O., & Utley, C . (2006). Building positive relationships on behalf of culturally and linguistically diverse students with challenging behaviors. Arlington,VA: The Council for Children with Behavioral Disorders.

Schalock, R., Verdugo, M., Jenaro, C., Wang, M., Wehmeyer , M., & Xu, J., & Lachapelle, Y. (2005). Cross-cultural study of core quality of life indicators. American Journal on Mental Retardation, 110, 298-311.

Riffel, L.A., Wehmeyer , M.L., Turnbull , A.P., Lattimore , J., Davies, D., Stock, S., & Fisher, S. (2005). Promoting independent performance of transition-related tasks using a palmtop PC-based self-directed visual and auditory prompting system. Journal of Special Education Technology, 20(2), 5-14.

Ravesloot, C.R., Seekins, T., and White, G.W. (2005). Living well with a disability health promotion intervention: Improved health status for consumers and lower costs for health care policymakers. Rehabilitation Psychology, 50, 239-245.

DeLeon, I. G., Williams , D., Gregory, M. K., & Hagopian, L. P. (2005). Unexamined potential effects of the noncontingent delivery of reinforcers. European Journal of Behavior Analysis, 6, 57-69.

Presentations

Shogren, K, Wehmeyer, M, Palmer, S & Bovaird, J “Development of perceptions of control in children and youth with mental retardation” (poster session), American Psychological Association (2005, August) Washington, D.C.

Barlow, SM , “Speech Motor Control” (2005, November) Society For Neuroscience: Special Session of Human Communication Systems, Washington, DC

Barlow, SM, Estep, M, Vantipalli, R, Finan, D , "Mechanosensory modulation of the trigeminofacial system during non-nutritive suck in premature infants" (2005, November) Society For Neuroscience, Washington, DC

Barlow, SM , "Orofacial Pattern Generation Across the Lifespan in Health and Disease” (2005, November), NIH-ASHA 15th Annual Research Symposium: "Biologic and Physiologic Foundations of Speech Motor Control" San Diego, CA. Invited presentation.

Cress , P. J. (2005, July). IT in education accessibility checklist: A resource for including all students. Presentation to the Mid-America Technology Institute conference, Overland Park, KS. (Presentation given twice.)

Ekerdt , D.J. "Futures for the Baby Boom: Described, Inscribed, and Prescribed" Penn State Conference on Social Structures: The Impact of Demographic Changes on the Well-Being of Older Persons. October 2005

Lee, S “The Gap Between Theory and Practice of Access to the General Curriculum for Students with Disabilities: Implications from Teachers” (poster) (October 2005) 43 rd annual conference of the Kansas Federation of the Council for Exceptional Children Wichita, KS

Cripe, K., Woods, J. J., Kataoka, J., & Lindeman , D. P. (2005, October). Supporting system change toward family-centered natural environments through staff development. Poster presented at the DEC 2005 21 st Annual International Conference on Young Children with Special Needs and Their Families, Portland, OR.

On October 6, 2005 Dot Nary gave a presentation at the Kansas State Nurses Association annual meeting in Topeka, KS titles, “Disability Doesn't Mean Unhealthy: Challenges and Solutions to Promoting Health for People with Disabilities.”

Olson , K., Stiffler, K., Duden, B., & Merklein, G. (2005, October). Apprenticeship for direct support professionals. Be instrumental. Presentation at the Annual InterHab Conference, Overland Park, KS.

Poston, D, Palmer, S “Transition to the Community: The Promise of Self-Determination” (October 2006) Annual InterHab Conference, Overland Park, Kansas

Poston, D (and her son, A.J) “My Life, My Way – Planning and Paying for a Life After High School” (October 2005) 43 rd annual conference of the Kansas Federation of the Council for Exceptional Children Wichita, KS

Jennifer Schwartz, Sara Sack, and Grace Leu-Burke, “Self-Direction in Kansas”, Kansas Disability Caucus, Topeka, KS, August 11, 2005.

Sheila Simmons and Sara Sack, “A Model for Assistive Technology Services and Supports”, European Conference of the Association for the Advancement of Assistive Technology in Europe, Lille, France, September 8, 2005.

Jennifer Schwartz and Sara Sack, “Self-Direction in Kansas”, Self Advocacy Coalition of Kansas Conference, Wichita, KS, October 1, 2005.

Jennifer Schwartz, Brenda Maxey, Carolee Miner, Sara Sack , Ramona Macek, Troy Horton, Kathy Reed, & Sheila Simmons , “Increasing Self-Directed Services Among Persons with Developmental Disabilities”, Interhab Conference, Overland Park, October 5, 2005.

Sailor, W. “Schoolwide Applications Model” (October 2005) Arizona TASH Inclusion Conference in Flagstaff, Arizona, in June.

Sailor, W., McCart, A, Wolf, N, Griggs, P, & Freeman, R (October 2005) “Developing Structures for Family/Community/ Student Involvement.” PBS Implementation Forum, Chicago.

Sailor, W. “Positive Behavior Support and a Universal Design for Learning,” keynote address (October 2006) 9 th Annual Beyond Access Inclusion Conference in Memphis.

Sailor, W. “Critical Features of the Schoolwide Applications Model (SAM): Planning, Implementation, and Measurement” (October 2006) 9 th Annual Beyond Access Inclusion Conference in Memphis.

Sheila Simmons , Assistive Technology for Kansans Contractual Commitments, Assistive Technology for Kansans Advisory Council, Topeka, KS, September 28, 2005.

Sara Sack, Understanding the Kansas State Plan for Assistive Technology, Assistive Technology for Kansas Advisory Council, Topeka, KS, September 28, 2005.
Smith, C. (2005, August). Outcomes and strategic planning. Onsite workshop and training to Olathe Head Start, Olathe, KS.

Smith , C. (2005, June, July, August). Outcomes and integrated service delivery: Planning for success and measuring it. Onsite workshop and training to Abilene Child Care Center in Abilene, June 29-30; Heartland Head Start in Salina, July 6; Hays Head Start in Hays, July 7-8; Southeast Kansas Community Action Program, Girard, July 13-14; Clay Center Child Care Center, Clay Center, August 15; Community Action Inc. in Topeka, August 16-17

Smith , C. (2005, August). Community assessments and strategic planning: A strategy for integrating actions and outcomes. Onsite workshop and training to Northeast Kansas Community Action Program in Hiawatha, August 18 and Mid America Community Action Program in Augusta, August 25-26.

Storkel, H.L. (2005, November). Form representations in word learning. With N. Capone, S. Gray, T.P. Hogan, S. Ellis Weismer in seminar entitled ‘Word learning I: Work learning across representations and populations.' American Speech-Language-Hearing Association Convention, San Diego, CA.

Hoover, J.R., Storkel, H.L., & Giles, A.N. (2005, November). Word learning II: Evidence from children with phonological delays. American Speech-Language-Hearing Association Convention, San Diego, CA.

Maekawa, J. & Storkel, H.L. (2005, November). Word learning II: Naturalistic learning by children with phonological delays. American Speech-Language-Hearing Association Convention, San Diego, CA.

Hogan, T.P., Storkel, H.L., Catts, H.W., & Zoglman, K. (2005, November). Word learning II: Word learning in preschoolers differing in phonological awareness. American Speech-Language-Hearing Association Convention, San Diego, CA.

Storkel, H.L. & Hoover, J.R. (2005, November). Whole-word versus part-word phonotactic probability/neighborhood density in word learning by children. Boston University Conference on Language Development 30, Boston, MA.

Storkel, H.L., Hogan, T.P., Hoover, J.R., & Maekawa, J. (2005, September). New frontiers in clinical practice: Children with phonological disorders. Kansas Speech-Language-Hearing Association Convention, Overland Park, KS.

Stowe, M, Huerta, N Continuing education seminar on the 2004 Reauthorization of IDEA, Lenexa, Kansas

Summers, J, Gotto, G, Zuna, N “Being Part of a Community: Activities, Barriers, and Strategies” (October 2005) 43 rd annual conference of the Kansas Federation of the Council for Exceptional Children Wichita, KS

Turnbull, A “Family Quality of Life” (2005, October) Association Pour la Recherche sur l'Autisme et la Prevention des Inadaptations, Les Croisic, France

Training, Consultation, Professional Service, Technical Assistance

Joan Houghton has developed four online courses for the Indiana State Department of Education. The courses cover several topics related to teaching children with deaf-blindness. They were developed through the Indiana State Department of Education, Special Education Services Division, with Indiana Deaf-blind Services Project at Indiana State University.

Central Office News and Announcements

Project Development

Paul Diedrich, Associate Director for Project Development

Good News!! Revised Procedures for Proposal Processing

1. Consultant Letters – will be included if the consultant is named, but the letter need not include any dollar amounts.

2. Non-competing continuations will not require letters from consultants or subcontractors.

3. Fee-for-service items in the budget will not require letters, but projected amounts should be in the budget and justified in the budget justification.

4. If letters from possible participant sites are deemed appropriate by the PI, they need not mention dollar amounts. It is important though that those expenses not be listed as subcontracts in the budget. If they are listed as subcontracts, then the preparers will need to request all of the information necessary for a subcontract.

If you have any questions about this shift in what is required for proposal submission, please contact Paul at diedrich@ku.edu or 785-864-0577.

Our thanks to Jim Roberts, Mary Lee Hummert, Barbara Armbrister, Barbara Earl, Kristi Billinger and the other KUCR-Proposal Preparation Managers for these changes in procedures.

Proposal Submissions

Past Submissions not Previously Reported

1. Michael Wehmeyer submitted his second-year Grant Performance Report (GPR) “Rehabilitation Research Center on Cognitive Disabilities” to the University of Colorado, prime contractor to DE/OSERS/NIDRR on August 24, 2005.

2. Chris Smith submitted a new fourteen-month proposal “Community Action Agency Training in Excellence System” to the Southeast Kansas Community Action Program on August 29, 2005.

3. Pam Cress submitted her fifth-year continuation “Great Plains Disability and Business Technical Assistance Center” to the University of Missouri on August 30, 2005.

4. Joseph Donnelly and Bryan Smith submitted a supplement to “Synergistic Effect of Dairy Foods on Metabolism: A Mechanistic Study” to KUMC – PI Debra Sullivan, prime contractor to Dairy Management, Inc. on August 31, 2005.

5. Sara Sack submitted her seventh-year continuation “Assistive Technology Services for Vocational Rehabilitation Customers” to Kansas SRS on August 31, 2005.

6. Jerry Rea submitted a new, one-year proposal “Southeast Kansas Pilot Project to Replicate the Oregon Model of Intervention with Antisocial Youth Families” to the Kansas Department SRS on August 31, 2005.

7. John Colombo submitted his third-year continuation “Mead Johnson Nutritionals Research” to KUMC – PI Susan Carlson, prime contractor to Mead Johnson on September 6, 2005.

8. Glen White submitted a new, five-year subcontract “The Independent Living Clearinghouse Collaborative on Training and Technical Assistance” to the National Council on Independent Living, prime contractor to DE/OSERS/NIDRR on September 7, 2005.

9. Steve Warren, Judith Carta and Kathleen Baggett submitted their second-year continuation “Baby/Child Library: Reading is Fundamental” to Georgetown University on September 8, 2005.

10. Jane Atwater submitted her second-year continuation “Midwest Child Care Consortium II: Quality Rating Systems and Professional Development for Child Care Providers” to the University of Nebraska – Lincoln, prime contractor to HHS on September 14, 2005.

11. Glen White and Michael Fox submitted a new, one-year supplement “Assessing the Impact of Hurricane Katrina on Persons with Disabilities” in conjunction with their RTC/IL to DE/OSERS/NIDRR on September 20, 2005.

12. Glen White, in conjunction with subcontractor University of Washington - Dr. David Gray, submitted a new, four-month supplement to the “RTC on Full Participation in Independent Living” on September 28, 2005.

13. Mabel Rice submitted her eleventh-year continuation “Morphosyntactic Abilities of SLI Probands and Families to NIDCD on October 1, 2005.

14. Stephen Fowler submitted his seventeenth-year continuation “Biophysical Study of Antipsychotics Behavioral Effects” to NIMH on October 1, 2005.

15. Richard Saunders and Muriel Saunders submitted a new, five-year RO1 “Communication for People with Severe Disabilities” to NICHD on October 1, 2005.

16. Ric Steele submitted a new, three-year RO1 “Association of Adaptive Style to Symptom Discrepancy and Health Outcomes” to NIMH on October 1, 2005.

17. Jerry Rea and Dean Williams submitted a new, two-year RO3 “Analysis of Fluoxetine's Effectiveness with Mentally Retarded Sex Offenders” to NICHD on October 1, 2005.

18. Judith Carta and Steven Warren submitted a five-year subcontract “Early Neglect and Later Child Diet Activity Growth and Development” to University of Alabama - Birmingham, prime contractor to NIH, on October 1, 2005.

19. Todd Little submitted a five-year subcontract “Behavior, Expressive and Receptive Language Intervention (B-ERLSI) Project” to University of Nebraska-Lincoln, prime contractor to NIH, on October 1, 2005.

20. Dean Williams submitted a two-year subcontract “Translational Research on NCR Interventions for Behavior Disorders” to the Kennedy Krieger Institute, prime contractor to NIH, on October 1, 2005.

21. Katherine Froehlich-Grobe submitted a four and one-half year research supplement to promote diversity in health-related research on her “Randomized Exercise Trial for Wheelchair Users” to NICHD on October 1, 2005.

22. Amy McCart and Wayne Sailor submitted their second-year continuation “Comprehensive School Reform: The Positive Behavior Support and Math Proficiency Model-F.L. Schlagle High School” to the Kansas City, Kansas School District on October 13, 2005.

23. Joseph Donnelly, Bryan Smith, Richard Washburn, Debra Sullivan, Cheryl Gibson, Matthew Mayo and Robert Lee submitted a new, five-year proposal “Equivalent Weight Loss for Phone and Clinical Weight Management Programs” to NIH on October 14, 2005.

Two Steppingstones of Technology Innovation for Children with Disabilities proposals were submitted on October 18, 2005:

24. Muriel and Richard Saunders submitted a new, two-year, Phase I project “A Research and Technology Innovation for Students with Disabilities; and

25. Charles Greenwood and Jay Buzhardt submitted a new, three-year, Phase II project “Effects of Progress Monitoring Supported by National Web-based Technology on the Intervention Results of Infants with/without Disabilities Ages Birth to Three.

26. Dale Walker submitted her second-year continuation “Training and Technical Assistance Support for Administration of the Early Childhood Indicator Assessment” to the Missouri Head Start Association on October 20, 2005.

27. Charles Greenwood, Judith Carta and Dale Walker submitted their second-year continuation “Evaluation Workscope of Early Communication Indicators to the Kansas SRS on October 24, 2005.

28. Wendy Parent submitted a new, five-year subcontract to the Cerebral Palsy Research Foundation, prime contractor to DE/OSERS/NIDRR's Disability Rehabilitation Research Program on October 28, 2005.

29. Rachel Freeman and Amy McCart submitted their fifth-year, continuation “Kansas Institute on Positive Behavior Support” to the Kansas Department of SRS on October 31, 2005.

Upcoming Proposal Submissions

30. Steven Barlow, in collaboration with Perry Clark at KU Medical Center and Jose Gierbolini at Stormont-Vail Hospital, submitted their fifth-year continuation “Sensorimotor Control of the Human Orofacial System” to NIDCD on November 1, 2005.

31. Holly Storkel submitted her third-year continuation “The Mental Lexicon of Children with Phonological Delays” to NIDCD on November 1, 2005.

32. Nancy Brady and Kathy Thiemann are resubmitting a new, five-year, RO1 “Communication Success and AAC: A Model of Symbol Acquisition” to NIDCD on November 1, 2005.

33. Kathryn Saunders is resubmitting a new, five-year, RO1 “Recombinative Generalization of Within-syllable Units in MR” to NICHD on November 1, 2005.

34. Susan Kemper resubmitted a new, five-year subcontract “Decomposing Executive Function in Aging, Parkinson's Disease and Alzheimer's Disease” to KUMC, prime contractor to NIA on November 1, 2005.

35. Todd Little resubmitted a new, four-year subcontract “Child Sleep Problems in the Context of Marital Conflict” to Auburn University, prime contractor to NIA on November 1, 2005.

New Awards (not previously funded) Information

1. Martha Hodgesmith, Glen White and Michael Fox received a new, two-year award “State Implementation Project for Preventing Secondary Conditions and Promoting the Health of People with Disabilities” from the Kansas Department of Health and Environment that began July 1, 2005.

2. Susan Kemper received a new, two-year subcontract “Cost of Conversation After Stroke: Functional Deficits Revealed After Speaking” from the KU Medical Center – PI Patricia Pohl, prime contractor to the American Heart Association, that began July 1, 2005.

3. Jerry Schultz and Beverly Graham received a new, one-year award “Allen County Community Health Assessment and Action Planning Process” from the Reach Healthcare Foundation that began July 1, 2005.

4. Jerry Rea received a new, one-year award “Southeast Kansas Pilot Project to Replicate the Oregon Model of Intervention with Antisocial Youth Families” from the Kansas Department SRS that began July 21, 2005.

5. Chris Smith received a new, fourteen-month award “Community Action Agency Training in Excellence System” from the Southeast Kansas Community Action Program that began August 1, 2005.

6. Katherine Froehlich-Grobe received a new, five-year award “A Randomized Exercise Trial for Wheelchair Users” from NICHD that began September 1, 2005.

7. Todd Little received a new, one-year conference award “On the Methodological Challenges and Substantive Opportunities of Dyadic Data Designs” from NSF that began September 1, 2005.

8. Jerry Schultz received a new, one-year award “Systems of Care, Children and Family Services” from the Kansas Department SRS that began September 1, 2005.

9. Bryan Smith received a new, six-month award “Shape Up!” from the Girl Scouts that began September 1, 2005.

10. Wendy Parent and Michael Wehmeyer received a new, four-year award “Women's Education Equity Program” from the DE/Office of Innovation and Improvement that began October 2, 2005.

Comments and questions to: lifespan@ku.edu


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