Lifeline Online Newsletter

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March 2004

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 of Lifeline

Submit your presentations: A calendar and archive of seminars, presentations, posters and training by and of interest to Life Span investigators begin at http://www.lsi.ku.edu/lsi/internal/seminars/index.html. Send your submissions to jessica@ku.edu.

Contents

Horn and Palmer to head KU research for multi-university pre-school curriculum model grant; Marquis and Little to conduct overall data analysis

In memoriam: Montrose Wolf, trailblazing behavioral psychologist

Access to medical assessments for children with disabilities – Chet Johnson

PictureReader: Behavioral Technology for Teaching Task Sequencing Skills – Chuck Spelllman

NSF expert to speak April 8 on need for interdisciplinary research on natural disasters

Beach Center human Genome Project grant update

Beach Center Doctoral Candidate called to WHO post

Life Span in the News – Donnelly classroom exercise project featured on Kansas Public Radio; Fowler quoted in Lawrence Journal World story on role of antidepressant drugs in suicide.

Central Office News

· April 14th RDA Brownbag: Current Trends in the Treatment of Missing Data

· March Project Development

· Reporting computer and LSI networking problems

Horn and Palmer selected for multi-university curriculum model project funded by federal agency consortium; Marquis and Little to conduct overall data analysis

Eva Horn, Associate Professor of Special Education with Susan Palmer, Assistant Research Professor, will head Kansas University efforts for a multi-university national project to determine if a preschool curriculum model helps children be more successful in kindergarten and the primary grades.

Janet Marquis, Associate Scientist and LSI Research Design and Analysis (RDA) Co-Director, will lead across-site data analysis and statistical consultation in consultation with LSI RDA Director Todd Little.

The five-year $4.6 million Children’s School Success (CSS) curriculum is funded by a consortium of federal agencies including the National Institute of Child Health and Development and the Department of Education to address the increasing disparity between the general population of American children and those who have disabilities, are from low-income families and who are English language learners.

The project is one of only eight such grants that will study the effectiveness of the CSS pre-kindergarten curriculum for 600 children in 90 Kansas, Indiana, California, Maryland and West Virginia classroom. CSS includes researchers at Purdue University, San Francisco State University and the University of Maryland lead by the University of Indiana.

CSS is the integration of several component social and academic programs that have proven to be effective for pre-kindergarten at-risk children. The curriculum combines engaging, age-appropriate activities for science, beginning math concepts, literacy, social skills, and incorporates a means to individualize the information for students who need further instruction.

In memoriam: Montrose Wolf, trailblazing behavioral psychologist

Mont Wolf, one of the true innovators in making applied behavioral analysis work in the real world on behalf of children in places from Lawrence’s Achievement Place to Boys Town, died Friday, March 19 at the age of 68. See Obituary .

Access to Medical Evaluations for Children with Disabilities

Chet D. Johnson, M.D., F.A.A.P.Professor of Pediatrics & Director, Developmental Disabilities Center

cjohnson5@kumc.edu

Many insurance plans do not provide benefits for children with special health care needs. These children go untreated, undertreated, or improperly treated for years, because payment is denied for the comprehensive evaluation needed to appropriately diagnose such conditions as developmental delays, autism, mental retardation and many other conditions. As a result, these children needlessly suffer and are unable to reach their full potential – ultimately costing our health care system and our society. We must work to mandate that health insurance plans cover comprehensive evaluations for children with special health care needs.

Insurance pays for the diagnostic care of children with special health care needs like asthma, diabetes, or cancer. Most Kansans, however, are unaware that their health insurance may not cover appropriate medical evaluations for children with developmental disabilities. The lack of an early and accurate comprehensive diagnostic evaluation interferes with both the family's ability to access appropriate services and the physician’s ability to appropriately provide treatment and help prevent complications. Appropriate evaluation should be a fundamental right of all children.

Children diagnosed with autism at an early age are able to obtain treatment that allows them to reach their full potential. Many children with developmental delays have other treatable medical conditions. Such conditions may include genetic disorders or problems with vision or hearing. Children who receive appropriate services are less likely to have secondary conditions like aggressive behavior and self-injury. Families of children with special needs who receive appropriate health care experience less stress and are better able to care for their children.

Every child who has evidence of developmental delays has a right to a thorough interdisciplinary medical evaluation, involving all necessary physician specialists, psychologists, and allied health professionals (PT, OT, Speech/Language, Nutrition), and medically appropriate laboratory (genetic studies, for example) and medical imaging (MRI, for example) testing. The medical workup for these conditions should be covered under the medical portion of the child’s insurance plan. Children should be entitled to a thorough medical evaluation for developmental delays, just as they would be for any other medical condition.

Families and professionals need to work together to address this important component of children’s health care. Please look for opportunities within your personal and professional spheres of influence to change health policies and regulations to include benefits for medical evaluations for all children, including those with developmental disabilities and other special health care needs.

PictureReader: Behavioral Technology for Teaching Task Sequencing Skills

(From the Parson LSI Insider)

Charles R. Spellman, Senior Scientist

Dr. Charles Spellman collaborated with Dr. Karen Mahon, Research Scientist for Praxis, Inc., (formerly an Assistant Research Professor at the Life Span Institute at Parsons) to obtain an SBIR Phase I grant to develop and study a computer-based product called the PictureReader, intended primarily for individuals with intellectual disabilities. This project is compatible with the current commercial development of methodologies used by the Behavioral Technology Group at the Shriver Center, University of Massachusetts Medical School, and allied laboratories. These programs teach most of the “readiness skills” required to use the PictureReader.

The PictureReader addresses skills needed to complete a sequence of steps of multi-step tasks. The objective is to teach learners to “read” pictures that represent nouns and symbols that represent essential verbs, and to read novel combinations in order to complete tasks independently. The curriculum requires the learner to imitate a video model of a task and to reproduce the behavior sequence when presented with pictures corresponding to the steps of the video task. This work builds on the findings of Spellman and his colleagues who have studied picture reading over the past 30 years. In the past, creating instructional materials that include pictures, verb symbols, and video has been a time-consuming task. With a digital camera and the PictureReader program the task of designing and developing individualized programs is greatly simplified.

This grant will provide an initial field test of the PictureReader. The questions to be answered are: (1) Can the product be used by teachers for teaching video imitation and/or picture reading? (2) What aspects of the program need revision prior to additional field testing? Once revisions are made based on the initial field testing, the primary field test will evaluate the effectiveness of the product for teaching picture reading to individuals with intellectual disabilities. Although earlier research and experience indicate that the PictureReader package is likely to be highly effective, it will be necessary to demonstrate this with the prototype and with a representative group of users. This research and product development will provide the software and data needed to apply for a Phase II SBIR project which will address: recombinative generalization, application to hand-held devices and development of on-line teacher tutorials and an extensive library of videos, pictures and symbols needed to create novel instructional programs.

NSF expert to speak on need for interdisciplinary research on natural disasters

Of interest to LSI researchers, the April 8 KU Policy Research Institute speaker, Vilas Mujumdar of the National Science Foundation will discuss Integrated Research Related to Reducing Natural Hazard Risks - Challenges and Opportunities.

The overall cost to society due to natural disasters is increasing on an annualized basis. In spite of significant advances made in technical disciplines to mitigate disaster effects, societal costs are high. In this seminar, Dr. Mujumdar will argue that integrated research incorporating several disciplines – including the collaboration of the natural sciences, engineering, and the social sciences -- is necessary to reduce these costs.

Dr. Mujumdar is program director for the Division of Civil and Mechanical Systems (ENG/CMS) at the National Science Foundation.

Thursday April 08 - Relays Room, Burge Union, 1:30 pm - 3:00 pm

To register, please contact Charlotte Talley at PRI by e-mail, ctalley@ku.edu, or by phone, 864-9101, and provide your name and department. You will receive an e-mail confirmation.

Beach Center Human Genome Project Ethics, Law and Social Issues Grant Update

Matt Stowe, Assistant Research Professor

On Thursday, May 6th, the advisory committee for the Beach Center’s research on the disability community’s concerns, expectations, and responses to human genetic research and technology will meet to review the progress and findings of the first year of the project and plan the next year’s activities. The advisory committee brings together individuals representing leadership in grassroots and national disability organizations, families with children with disabilities, and experts representing multiple disciplines (e.g. genetics, history, law, psychology, philosophy, and bioethics) to discuss the implications of genetic research and technology, and more specifically, the preliminary results of the Beach Center’s investigation of the concerns and expectations of members of the disability community regarding genetics.

The advisory committee’s meeting is part of a Beach Center qualitative research project conducted under the ethics, law, and social issues (ELSI) grant program funded by the National Human Genetics Research Institute (NHGRI), an agency under the umbrella of the National Institute of Health (NIH) in the Department of Health and Human Services.

For more information, contact Matthew Stowe, co-PI at 785-864-0596 or matstowe@ku.edu

Beach Center Doctoral Candidate called to WHO post

Hasheem Mannan, a Beach Center doctoral candidate in Disability Policy and Family Studies will serve as a technical officer in the World Health Organization’s (WHO) Disability and Rehabilitation (DAR) team from April 5 until June 5 in Geneva. He will assist in the preparation of the WHO's position statement on the current draft proposal of the comprehensive and integral convention on the protection and promotion of the rights and dignity of persons with disabilities. In this process he will collaborate with representatives from the WHO Mental Health, Child and Adolescent Health, Human Genome, Health and Human Rights, Classifications, and UNAIDS.

Life Span in the News

Joe Donnelly, director of the Center for Physical Activity and Weight Management, says that schools can be big part of the solution to the obesity epidemic, an epidemic that could result could result in fully 50 percent of the adult population with Type 2 Diabetes by 2030. Speaking on the statewide Kansas Public Radio's Kansas Kids Health program, Donnelly believes that incorporating 100 minutes of physical activity a week into the classroom curriculum will prevent childhood obesity while enhancing learning.

His five-year study of close to 5,000 children in 10 northeast Kansas schools, Physical Activity Across the Curriculum or PAAC, includes Susan Tate's third grade class at Lecompton Elementary, the focus of reporter Bryan Thompson's story at http://www.kansaskidshealth.org/current.asp.

Life Span Senior Scientist Steve Fowler, professor of pharmacology and toxicology, told the Lawrence Journal World that suicide cannot be predicted well enough to determine the role of drugs as a cause. http://www.ljworld.com/section/frontpage/story/165372.

Promotions, Honors, Publications, Presentations, Testimony, Honors, Addresses, Appointments, Consultation

Promotions

Dale Walker, Assistant Professor of HDFL and Juniper Gardens Children’s Project principal investigator, has been promoted to Associate Scientist

Glen White, Director of the Research and Training Center on Independent Living, has been promoted to Professor and Senior Scientist

Honors

Steve Warren was elected by the directors of the Developmental Disability Research Centers Organization to serve at the chair for the next two years starting this summer.

Publications

Reese, R.M., Richman D.M., Belmont J.M., & Morse, P. (in press). Functional characteristics of disruptive behavior in developmentally disabled children with and without autism. Journal of Autism and Developmental Disorders.

Presentations

Barlow, S.M., Finan, D.S., Seibel, L., Stumm, S., Ponnaboyina, S., Shantha, R., & Konopacki, R. (2004). Actifier II: The dynamics of sensorimotor integration during suck in neonates and infants. 13th Biennial National Speech Motor Control Conference, Albuquerque, NM.

Caruso, M., Lewine, J., Zarcone, J.R., Thompson, T.T., Ward, S., Young, J., Moore, L., Popescu, M., Holsen, L., & Butler, M. Magnetoencephalographic Components in Prader-Willi Syndrome. Gatlinburg Conference on Research and Theory in Mental Retardation and Developmental Disabilities, March 12, 2004, San Diego, CA.

Doughty, A.H., Williams, D.C., & Saunders, K.J. Sustaining attention in adults with mild mental retardation. Gatlinburg Conference on Research and Theory in Mental Retardation and Developmental Disabilities, March 12, 2004, San Diego, CA.

Haag, S.S., Anderson, C.M., Williams, D.C., & Saunders, K.J. Establishing control of self-stimulatory responding by an antecedent stimulus using punishment. Gatlinburg Conference on Research and Theory in Mental Retardation and Developmental Disabilities, March 12, 2004, San Diego, CA.

Hammer, M., & Barlow, S.M. (2004). Laryngeal engagement following bilateral subthalamic nucleus deep brain stimulation in Parkinson’s disease. 13th Biennial National SPEECH MOTOR CONTROL Conference, Albuquerque, NM.

Hammer, M., & Barlow, S.M. (2004). Real-time biofeedback and speech aerodynamics: a preliminary study of laryngeal motor control. 13th Biennial National Speech Motor Control Conference, Albuquerque, NM.

Hammer, M., & Barlow, S.M. (2004). Velopharyngeal aerodynamics following bilateral subthalamic nucleus deep brain stimulation in Parkinson’s disease. 13th Biennial National Speech Motor Control Conference, Albuquerque, NM.

Holsen, L.M., Zarcone, J.R., Thompson, T.T., Ward, S., Caruso, M., Butler, M., & Savage, C.R. Food-Related Compulsive Behavior in Prader-Willi Syndrome Using Functional Magnetic Resonance Imaging. Gatlinburg Conference on Research and Theory in Mental Retardation and Developmental Disabilities, March 12, 2004, San Diego, CA.

Johnson, C., & Reese, M. Policy Issues and Autism. InterHab (Resource Network for Kansans with Disabilities) March 24, 2004.

Nary, D. For Those Who Can’t “Hop Up!” Onto the Table (This session assisted in identifying and removing barriers to health care that may prevent persons with disabilities from accessing these services). Kansas Cancer Partners’ Conference, March 3, 2004, Topeka, KS.

Raghavendra, S., & Barlow, S.M. (2004). FORCEWIN RT: Clinical application for motor speech disorders. 13th Biennial National Speech Motor Control Conference, Albuquerque, NM.

Reese, M. Positive Behavior Supports and Functional Assessment. Outreach to Rural Kansas Presentation March 30th – April 2, 2004, Oakley, KS; Hayes, KS.

Saunders, K.J., Chaney, L., & Doughty, A.H. Developing the alphabetic principle in adults with mental retardation: Abstracting vowel sounds. Gatlinburg Conference on Research and Theory in Mental Retardation and Developmental Disabilities, March 12, 2004, San Diego, CA.

Saunders, R., & Saunders, M. (2004). Comparison of preference testing methods in people with profound multiple impairments [Abstract]. Proceedings of the 37th Annual Gatlinburg Conference on Research and Theory in Mental Retardation and Developmental Disabilities.

Saunders, R.R., & Saunders, M.D. Comparison of Preference Testing Methods in People with Profound Multiple Impairments. Gatlinburg Conference on Research and Theory in Mental Retardation and Developmental Disabilities, March 13, 2004, San Diego, CA.

Stewart, K., Suchowierska, M., Chaney, L., & Saunders, K. Recombinative Generalization of Within-Syllable Units in Constructed Spelling. Gatlinburg Conference on Research and Theory in Mental Retardation and Developmental Disabilities, March 12, 2004, San Diego, CA.

Stewart, K., Suchowierska, M., Chaney, L., & Saunders, K. (2004). Recombinative generalization of within-syllable units in constructed spelling [Abstract]. Proceedings of the 37th Annual Gatlinburg Conference on Research and Theory in Mental Retardation and Developmental Disabilities.

Vantipalli, R., & Barlow, S.M. (2004). AEROWIN RT: Clinical application for motor speech disorders. 13th Biennial National Speech Motor Control Conference, Albuquerque, NM.

Williams, D.C. (2004, March). Relations between basic and applied behavioral analysis: Translational research and the human operant laboratory. Invited address to the Annual Texas Association for Behavior Analysis Conference, Dallas, TX.

Williams, D.C., Bejarano, R., Doughty, A.H., & Perone, M. Toward a Laboratory Model of Maladaptive Escape Behavior in People with Developmental Disabilities. Gatlinburg Conference on Research and Theory in Mental Retardation and Developmental

Poster Sessions

Jack, S.L., Broyles, L., Lindeman, D.P. Developing Positive Behavior Support in Head Start: A Program-wide Approach. Poster presentation at Midwest Symposium for Leadership in Behavior Disorders, Feb. 2004, Kansas City, MO.

Testimony

Johnson, Chet, M.D., Testimony before House Health & Human Services Committee in support of House Bill 2350 (created for provision of early identification and intervention for newborns with the likelihood of developing a delay), February 17, 2004

McCart, Amy, Ph.D. Testimony on Senate Bill 531 supporting deinstitutionalization.

Lectures

Beauchamp, D. The Exceptional Child: Understanding Autism & Implementing Effective Teaching Strategies. Elementary Education course lecture, Johnson County Community College, Overland Park, KS, March 27, 2004.

Rinner, L., Nissenbaum, M., & Stovall, K. Evaluation of Children with Autism Spectrum Disorders. Communication Disorders course lecture, Rockhurst University, Kansas City, MO, February 25, 2004.

Sailor, W. Beyond Inclusion: The Schoolwide Applications Model (SAM). Lecture given during SPED 970 Class on March 10, 2004.

Consultation

Jacquelyn Hampton participated in the Inclusive Early Care and Education Policy Forum held on March 15-16, 2004 in Arlington, Virginia. This was by invitation from the Administration on Developmental Disabilities that co-sponsored the forum with the Department of HHS's Child Care Bureau to identify and explore policies that support the inclusion of children with disabilities in early care and education settings.

Jacquelyn Hampton consulted with In The Spirit of the Children, Inc., a New York-based organization that focuses on children transitioning from the foster care system to independent living.

Denise Poston assisted in the Council's (also know as the Council on Quality and Leadership) review of measures and provided input on family outcomes based on the Beach Center's work on family quality of life.

Central Office News and Announcements

Research Design and Analysis

Todd Little, Director

April 14th RDA Brownbag: Current Trends in the Treatment of Missing Data

Todd Little will talk about current trends in the treatment of missing data on Wednesday, April 14, noon to one in the Dole RDA conference room #1090. At that time, two other April RDA brownbags will be announced on how to use the major software packages for imputing missing data.

IT

Gerald Hazen, Network Administrator

Requesting help with a computer or LSI network problem

Gerald and Edith ask LSI staff who use Dolenet/LSI Technical Services to request help in the following order:

1) The help link on the LSI Network and Computing Services web page at http://lsi.ku.edu/ncs will create a trouble ticket and send us an email, so Life Span staff should use it first.

2) If, for some reason, it isn't working, send an email to ncs@ku.edu,

3) As a last resort, call us at 4-5630 or 4-0557 between 8 AM and 5 PM, Monday through Friday.

4) If you need assistance after hours or weekends, call 979-1837.

Project Development

Paul Diedrich, Associate Director for Project Development

Past Submissions not Previously Reported

1. Amy McCart submitted her fourth-year continuation “Steps to Success: A Whole School Model to Enhance Learning through Partnerships” to the Kansas City, Kansas Public School District (prime contractor to DE/OSERS/OSEP) on March 12, 2004.

2. Kathy Thiemann submitted her third-year continuation “Promoting Generalized Social Communication Outcomes for Children with Autism: Effects of a Multi-Component Intervention in Inclusive School and Home Settings to DE/OSERS/OSEP on March 19, 2004.

3. Debra Kamps, Charles Greenwood, Carmen Arreaga-Mayer and Mary Abbott submitted their fourth-year continuation “Center for Early Intervention in Reading and Behavior to Improve the Performance of Young Children” to DE/OSERS/OSEP on March 26, 2004.

4. Richard Washburn, Dennis Jacobsen, Joseph Donnelly, J. Leon Greene, Debra Sullivan, Cheryl Gibson and Matthew Hall submitted their third-year progress report “Prevention of Obesity in YMCA Daycare Centers” to NIDDK on April 1, 2004.

5. Richard Washburn, Dennis Jacobsen, Joseph Donnelly, and Debra Sullivan submitted their second-year progress report “Resistance Training for the Prevention of Obesity” to NIDDK on April 1, 2004.

Upcoming Submissions

1. Mary Abbott will submit a new, one-year proposal “Grouping Size Efficacy Study of the LAMP (Language Arts Multisensory Program): An Investigation of the Learning of Students “Unresponsive” to Most Forms of Literacy Instruction” to the International Dyslexia Association on April 1, 2004.

2. Michael Roberts and Ric Steele will submit a new, three-year proposal “Children’s Adjustment of Parental Hematopoietic Stem Cell Transplantation” to the American Cancer Society on April 1, 2004.

3. Steven Barlow and Michael Hammer (predoctoral trainee) will submit a new, two-year NRSA individual fellowship proposal “Laryngeal Sensorimotor Control in Parkinson’s Disease” to NIH on April 5, 2004.

4. Mabel Rice and Stacy Betz (predoctoral trainee) will resubmit a two-year NRSA individual fellowship proposal “Language based ERPS in Children with and without SLI” to NIDCD on April 5, 2004.

New Awards (not previously funded) Information

1. Judith Carta received a new, one-year award “Preventing Child Neglect: A Model Program” from the University of Notre Dame that began September 30, 2004.

2. Dale Walker received a new, one-year award “Training and Technical Support for Administration on the Early Childhood Indicator Assessment” from the Missouri Head Start Association which began October 1, 2003.

3. Joe Donnelly and Dennis Jacobsen received a new, two-year award “Synergistic Effect of Dairy Foods on Metabolism: A Mechanistic Study” from the KU Medical Center (PI: Debra Sullivan) prime contractor to the Dairy Management Inc. which began November 15, 2003.

4. Richard Saunders received a new, one-year award “Data Collection on Food Purchase, Preparation and Consumption for JCDS Clients” from the Johnson County Developmental Supports that began January 15, 2004.

Requesting help with a computer or LSI network problem

Gerald and Edith ask LSI staff who use Dolenet/LSI Technical Services to request help in the following order:

1) The help link on the LSI Network and Computing Services web page at http://lsi.ku.edu/ncs will create a trouble ticket and send us an email, so Life Span staff should use it first.

2) If, for some reason, it isn't working, send an email to ncs@ku.edu,

3) As a last resort, call us at 4-5630 or 4-0557 between 8 AM and 5 PM, Monday through Friday.

4) If you need assistance after hours or weekends, call 979-1837.

Comments and questions to: lifespan@ku.edu


The University of Kansas prohibits discrimination on the basis of race, color, ethnicity, religion, sex, national origin, age, ancestry, disability, status as a veteran, sexual orientation, marital status, parental status, gender identity, gender expression, and genetic information in the university’s programs and activities. Retaliation is also prohibited by university policy. The following persons have been designated to handle inquiries regarding the nondiscrimination policies and are the Title IX coordinators for their respective campuses: Executive Director of the Office of Institutional Opportunity & Access, IOA@ku.edu, 1246 West Campus Road, Room 153A, Lawrence, KS 66045, 785-864-6414, 711 TTY (for the Lawrence, Edwards, Parsons, Yoder, and Topeka campuses); Director, Equal Opportunity Office, Mail Stop 7004, 4330 Shawnee Mission Parkway, Fairway, KS 66205, 913-588-8011, 711 TTY (for the Wichita, Salina, and Kansas City, Kansas, medical center campuses).