AUCD 2006 Annual Meeting Workshops

Monday, October 30, 2006
Location: Washington, DC

WORKSHOPS & TRAINING SYMPOSIUM

  • Workshop #1: Pain Management in Children and Adults with Special Health Needs
  • Workshop #2: Making It Real: Participatory Action Research in UCEDDs
  • Workshop #3: Strategies to Enhance the Relationship of the UCEDD and the Consumer Advisory Committee (CAC)
  • Workshop #4: NIRS Database Workshop and Data Coordinators Meeting
  • Workshop #5: NIH Extramural Research 101: Opportunities & Requirements
  • Workshop #6: Developing an Action Agenda to Improve Services to People with Disabilities Before, During and After Emergencies: Lessons from the Gulf States
  • Training Symposium: Preventing Violence Against People with Disabilities


Workshop #1:
Pain Management in Children and Adults with Special Health Needs
Date: Sunday, October 29, 2006
Time: 2:00pm-6:00pm

Presenters:

  • Cate McClain, MD, PT - Director, University of New Mexico LEND, Center for Development and Disability Pediatrics, Albuquerque, NM
  • Kim McKearnan, PhD, OTL - Oregon Institute on Disability & Development, LEND, Oregon Health & Science University, Child Development and Rehabilitation Center, Portland Oregon
  • Deborah O'Rourke, PhD, PT - VT Interdisciplinary Leadership Education for Health Professionals, LEND, University of Vermont, Burlington VT

This pre-conference workshop will give participants an overview of pain management issues in children and adults with disabilities and special health needs. A manual of resources on pain management for this population will be included in the course.

Topics will include:

  • Differences between acute and chronic pain, scope of pain management, JACHO requirements, impact of pain on functioning.
  • Assessment of pain using tools that include developmental aspects of pain assessment and assessment in non-verbal and cognitively impaired children and adults.
  • Pain medications, interactions, side effects, and protocols for acute and chronic pain.
  • Non-pharmacologic interventions, including complementary and alternative interventions.
  • Developing and monitoring pain management plans to use across a variety of settings.

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Workshop #2:
Making It Real: Participatory Action Research in UCEDDs

Date: Sunday, October 29, 2006
Time: 2:00pm-6:00pm

Presenters:

  • Angela Weaver, MEd - Oregon Institute on Disability & Development, Oregon Health & Science University, Portland, OR
  • Susan Yuan, PhD - Associate Director, Center on Disability and Community Inclusion The UCEDD of Vermont/University of Vermont, Burlington, VT
  • Gordon Richins - AUCD COCA Co-Chair, Center for Persons with Disabilities, Utah State University, Logan, UT
  • Sharon Hauss, MS - Indiana Institute on Disability and Community University Center for Excellence, Indiana University, Bloomington, IN
  • G. Denise Lance, PhD - Research Associate, Beach Center on Disability, Consumer Activities Coordinator, Kansas University Center on Developmental Disabilities, University of Kansas, Lawrence, KS

The workshop will unveil the Participatory Action Research Toolkit (PAR). The development of the PAR toolkit was an inclusive effort by, and for, researchers and people experiencing disability in their lives to enhance research across the AUCD network. The development of the PAR Toolkit was in response to the increased awareness and need for full participation of people with developmental disabilities and their family members in the planning, implementation and evaluation of UCEDD-based research. The workshop will cover:

  • An introduction and overview of the PAR Toolkit including why and how the PAR toolkit was developed.
  • Data results from the project's national needs assessment survey and how those results influenced the contents of the PAR toolkit.
  • An in-depth and interactive look at the PAR Toolkit i.e., resources, strategies, promising practices and tools.
  • Shared discussion on future ideas for PAR implementation in UCEDDs.

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Workshop #3:
Strategies to Enhance the Relationship of the UCEDD and the Consumer Advisory Committee (CAC)
Date: Sunday, October 29, 2006
Time: 2:00pm-6:00pm

Presenters:

  • Harold Kleinert, EdD - Director, University of Kentucky, Interdisciplinary Human Development Institute
  • Cathy Haarstad, MS - Coordinator- Multicultural and Consumer Affairs, Minot State University, North Dakota Center for Persons with Disabilities, Minot, ND
  • Joe Caldwell, PhD - 2005 AUCD Policy Fellow, University of Illinois-Chicago, Institute on Disability and Human Development, Chicago, IL
  • Laura Walker, BA - 2006 AUCD Policy Fellow, University of Missouri, Institute for Human Development, Kansa City, MO

A panel of COCA representatives from the Council on Consumer Advocacy (COCA), Consumer Advisory Committee (CAC) members and a UCEDD Director will present and discuss the current status and the need to enhance the working relationship of CACs and their involvement in UCEDDs.

Attendees will learn about the current needs in the network regarding meaningful participation of CAC members in UCEDD functions and planning. Attendees will also learn strategies and tools to address these needs developed through a needs assessment (Consumer Advisory Committees: Recommendations for Meaningful Participation of Individuals with Disabilities and Families, by J. Caldwell, S. Hauss, G. Richins and B. Stark) and orientation resources produced by AUCD for the Administration on Developmental Disabilities.

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Workshop #4:
NIRS Database Workshop and Data Coordinators Meeting

Date: Sunday, October 29, 2006
Time: 2:00pm - 6:00pm

Presenters:

  • Maggie Nygren, EdD - Technical Assistance director, AUCD, Silver Spring, MD
  • Crystal Pariseau, MSSW - LEND Program Coordinator, AUCD, Silver Spring, MD
  • Ray Gurganus - Senior Programmer, Community IT Innovators, Washington, DC
  • Danielle James - Technical Assistance Specialist, AUCD, Silver Spring, MD

This workshop will highlight the changes and updates made to NIRS for the FY07 iteration and review notable changes made in the FY06 version, including custom reporting features and the UCEDD Annual Report to ADD. This year's update has made NIRS more efficient and easier to use and new MCHB reporting capabilities have been developed. The session will provide participants the opportunity to ask questions and offer suggestions for continued improvement.

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Workshop #5:
NIH Extramural Research 101: Opportunities & Requirements

Date: Sunday, October 29, 2006
Time: 2:00pm - 6:00pm

Presenters:

  • Ljubisa Vitkovic, PhD - Mental Retardation and Developmental Disabilities Branch, National Institute of Child Health and Human Development, (NICHD/NIH)
  • Dr. Marita Hopmann - Division of Scientific Review, National Institute of Child Health and Human Development, (NICHD/NIH)
  • Ralph Nitkin, PhD - National Center for Medical Rehabilitation Research (NCMRR/NIH)

This workshop is directed toward new or prospective researchers (including faculty and trainees) who are thinking about or planning to submit a grant application to NIH. This workshop will provide basic information on the submission process, the current research culture and expectations of NIH in general and NICHD in particular. Emphasis will be given to the growing importance of translational research within NIH's overall strategic plans and the possible roles of university centers for multi-site networks. Presenters will provide an overview of the NIH peer-review process for grant applications, discuss common pitfalls and successful strategies of research proposals submitted to NIH and provide specific information on funding and grant opportunities. Participants are asked to come with specific ideas for or outlines of research projects for the "hands on" Q&A session and discussion segment of the workshop.

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Workshop #6:
Developing an Action Agenda to Improve Services to People with Disabilities Before, During and After Emergencies: Lessons from the Gulf States

Date: Sunday, October 29, 2006
Time: 2:00pm - 6:00pm

Presenters:

  • Roberta Carlin, MS, JD - Executive Director, American Association on Health and Disability, Rockville, MD
  • Anthony G. Cahill, PhD - Director, Division of Disability and Health Policy, Center for Development and Disability, University of New Mexico
  • Judith Holt, PhD - Director, Interdisciplinary Training Division, Center for Persons with Disabilities, Utah State University
  • Glen White, PhD - Associate Director, Kansas University Center on Developmental Disabilities, University of Kansas
  • Laura Stough, PhD - Interdisciplinary Training Coordinator, Center on Disability, Texas A & M University

This workshop is based on research and advocacy work being done by faculty of four UCEDD's that assesses gaps in meeting the needs and priorities of people with disabilities before, during and after the storms of 2005 hit the Gulf Coast. Representatives of each project will briefly summarize "lessons learned" in the interactions among the disability, independent living and emergency management communities in various phases of preparedness, response and recovery. What worked? What didn't? How much interaction was there between the disability and emergency management communities before, during and after the storms struck? What were the major problems that arose in providing services to people with disabilities during the storms and afterwards?

After the brief presentations workshop participants, including invited officials of federal disability and emergency management agencies will then use these lessons learned to develop a preliminary set of recommended changes in policies, programs and services in these communities at the local and regional levels. What can be done to better ensure that the needs and priorities of people with a wide range of physical and cognitive disabilities are met in future emergencies? In developing these recommendations, workshops participants will utilize the focus that "all response is local"-and effective preparation and response begins in the locality where the disaster or emergency situation occurs. Both physical communities as well as "communities of interest" such as the disability community must be proactively involved in preparing for future disasters. A second criterion to be used in developing recommendations is feasibility-can the recommendations realistically be put in place?

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Training Symposium:
Preventing Violence Against People with Disabilities

Date: Monday, October 30, 2006
Time: 1:30pm-5:00pm

The 2006 Training Symposium will bring two internationally recognized experts to examine the pathways that connect violence and disability, and the direct and indirect ways that disability increases vulnerability to violence. The presentations are research-based and include practical approaches to address this complex issue.

Presenters:

  • Dr. Dick Sobsey is the Director of the JP Das Developmental Disabilities Centre and the John Dossetor Health Ethics Centre at the University of Alberta in Edmonton, Canada. He has over 200 publications including his book, Violence and Abuse in the Lives of People with Disabilities. Dr. Sobsey also serves as a member of a United Nations advisory panel focused on violence against children.
  • Dr. Patricia Sullivan has authored several research projects on the incidence, prevalence and effect of abuse upon children and adults with disabilities. "Maltreatment and Disabilities: A population-based epidemiological study" (2000) by Patricia M. Sullivan and John F. Knutson assesses the prevalence of abuse and neglect among children with disabilities. Currently, Dr. Sullivan is a Professor of Neurology and Psychology at Creighton University and recently received a $2.5 million grant from the National Institutes of Health to study the effects of exposure to violence on children with disabilities.

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