NCEDC Minutes

Full Council Meeting

October 30, 2006

Elizabeth Bishop, Council Chair-UT Boling Center, Tennessee
Lori Risk, Secretary-West Virginia University CED

Christine Brewing-Waisman Center, University of Wisconsin-Madison
Judy C-Wayne State, DDI, MI
Vladmir Cuk-Institute on Disability and Human Development
Melina Danko-West Virginia University, CED
Susan Edelman-Center on Disability & Community Inclusion, VT
Katie Keiling-IL UCEDD
John Kramer-IDHD, University of Illinois at Chicago
Cary Kreutzer-CHLA, USC UCEDD
Marilyn Hammond-Center for Persons with Disabilities, UT
Diane Lenz-Northern Arizona University, Institute for Human Development
Karen Leventhal-Tarjan Center
Angela Martin for Elizabeth Janks-, DDI, MI UCEDD
Mary Mercer-North Dakota Center for Persons with Disabilities
Evette Mezger-AUCD National Office
Alan Parks-University of Maine
Thomas Pavkov-Indiana LEND/Purdue University
Mette Pedersen-CDD, UNM
Rebecca Pretzel-Center for Development and Learning, NC
Debbie Reinhartsen-Center for Development and Learning, NC
Sandy Root-Elledge-Wyoming Institute of Disabilities
Beth Rous-UK-HDI
Amy Sharp-Texas A&M
Linda Tuchman-Waisman Center, University of Wisconsin-Madison
Terri Urbano-Vanderbilt Kennedy Center
Susan Vig-Rose Kennedy Center, Bronx, NY
Tera Yoder-Virginia Partnership for People with Disabilities

Welcome and Introductions
Update Roster/Overview of the Council Purpose and Activities
Elizabeth Bishop, Chair, opened the meeting at 8:00, reviewed the agenda and introduced the Council's officers and committee chairs. She asked all members to sign in on the meeting sign in sheet and to make any necessary corrections on the membership roster. Elizabeth welcomed the Council members, including Dissemination Coordinators who were able to participate. She discussed the overall purpose of the Council and some of the Council's activities.

Meeting participants were asked to introduce themselves and to share what Center they are from and what their current topics of interest are in their work.

Topics included:

  • Prevention of violence/abuse and neglect
  • Emergency planning
  • Marketing/Public relations
  • Web Accessibility
  • Self-advocacy/Self-determination
  • Training design
  • Early childhood
  • Autism
  • Medical home
  • Minority communities
  • Epilepsy
  • Teleconferencing technology
  • Staff training
  • Sibling leadership
  • Distance learning
  • Secondary education options for children with disabilities
  • Interdisciplinary networking/Creating communities of learning
  • Person-centered planning
  • Families as mentors
  • Families as professionals
  • Dual diagnosis
  • Service inclusion/volunteerism
  • Arts and disability

AUCD Board of Directors Update
Elizabeth gave an AUCD Board update. AUCD's financial situation is good. She discussed the RTOI (Research Topics of Interest) projects which are done in partnership with the Centers for Disease Control and Prevention.

AUCD is starting a MATO (Multiple Award Task Order), awards from the Department of Education to UCEDDs that will be coming on to the network. The turnaround time for the RFPs will be quick.

New Council: CORE (Council on Research and Evaluation) is electing its chair today.

Feel free to contact other councils to sit in on meetings and learn more about what is going on in the network. Six councils currently exist. All six have a chair or co-chair that sits on the AUCD Board and provides a voice for that Council. The Council Chairs meet regularly to support each other and find areas of collaboration.

NCEDC Committee/Task Force Reports/Council Liaison Reports
Diane Lenz, Secretary for the AUCD Board last year, encouraged members to join in on Steering Committee calls. The committee will be steering people in for leadership and officer positions in the future.

Elizabeth welcomed people from the new UCEDDs: Texas A&M, UC Davis, Florida (USF), Georgia, Tennessee and Arizona.

TIPS Projects
The law provides that once all UCEDDs are funded at $500,000, ADD has the option to look at the National Training Initiative Projects again. This Council needs to provide input to the Board and to ADD on topics for TIPS.

Addition of Dissemination Coordinators to NCEDC
Elizabeth talked about NCEDC's efforts to bring Dissemination Coordinators onto this council and give them a home. The Council has been working to make this formal. The Council Rules were changed appropriately to reflect this addition and they were approved by the NCEDC. The Rule changes were presented to the AUCD Board. The board had some concerns. At Wednesday's board meeting, Elizabeth will be clarifying some of the terminology used in the Rule changes for the board.

Cary Kreutzer shared that California has had their MTAR Review. They are looking at the leadership roles of the Dissemination Coordinator and the Community Education Director and must revise how things are structured. ADD legislation says how UCEDDs are to be set up and what the roles should be. Dissemination is a core function, and therefore a significant part of the UCEDD.

Elizabeth stated that the Council will be operating under the revised rules and will be updated on the web site.

Voting Changes
Every UCEDD can have more than one member but only one vote. AUCD By-laws indicate only one member from each UCEDD and will have to be changed. This will most likely occur in the next year. But the Council can operate under the new Rules until then.

Committee Reports
Technical Assistance Committee: Tera Yoder, Chair
The Technical Assistance Committee looks at TA provided among training coordinators, as well as the TA we provide as UCEDDs. Tera shared the minutes from the TA Committee mtg. (See attached.) The committee talked about how to get more people involved in the TA Committee. The committee would like to continue TIPs, providing UCEDDs with an opportunity to share successes and best practices in training. They would also like to do teleconferences on special topics. The committee will continue to explore what TA can be and how it can support others.

Dissemination Committee: Sandy Root Elledge
No Report

We need to continue to update the AUCD website's NCEDC pages. This will be done with the revamping of the AUCD website. We will have to have a web master. Evette Mezger stated that the council section of the website will be password protected for administration of the site and recommended we think about the NCEDC section of the website. The Council has general information for the public and internal information for the Council members. It would be nice to add features such as message boards. AUCD will be looking into the development of an AUCD web portal for access by the AUCD network. This will be delved into after the launching of the website. Elizabeth extended her gratitude for Evette's involvement. Diane thanked the Dissemination Coordinators for joining the Council and looks forward to the future work of the Dissemination Committee.

Council on Consumer Affairs (COCA) Update
COCA is focusing on Participatory Action Research (PAR) and how we can involve people with disabilities in the research process from the beginning. They are also looking at the Consumer Advisory Committees and how we truly can make them how they are supposed to be. How do we make it so that people with disabilities can fully participate?

The DD Act is up for reauthorization. COCA is discussing what input they want to provide. Does the name of COCA need to change? The Council would like to provide input on language changes for the Act. Congress may wait until 2008 to address the reauthorization, so there is time to make recommendations.

Training Directors Council: Susan Vig
The Council is looking at Training Follow-up and the impact of training at the UCEDDs. They held a brainstorming session regarding the barriers to finding trainees 5+ years out. The NIRS survey is somewhat of a disincentive because it is so long.

NIRS Meeting: Julie Shears
Once the NIRS data is out there, it is locked and we do not necessarily want it out there anymore because of outdated practices, etc. Dissemination of information is very important, so we need to look carefully at information before it is put out there.

Committee Meetings
The NCEDC committees met for 25 minutes and discussed plans for the upcoming year, next steps and meeting dates.

Small Group Discussions
Members participated in small group discussions, based on the topics of interest identified early in the meeting and how they are pressing issues for the disability community. Topics included:

  1. Early childhood/autism/special education
  2. Self-advocacy/siblings, parents and families/Self-determination/Mentoring
  3. Interdisciplinary training/Continuing education/Distance learning/Technology
  4. Violence prevention/Abuse and neglect
  5. Emergency planning

Small groups shared current activities in these areas, as well as possible areas for collaboration.

NCEDC Annual Meeting Special Topics Discussions

Self-Advocacy/Siblings & Parents/Self-Determination/ Families/Mentoring


  • Siblings issues
    • Survey of activities
  • Legislative advocacy
    • Legislators involved - video encouraging involvement
  • UN convention on disability rights
  • COCA-Prog. Comm. - let COCA advise us

Early Childhood/Autism/Special Education

  • Kids in foster care
  • Vulnerable populations
  • Intersection between medical, mental health & education
  • Care coordination around services: what is the best model?
  • Form liaison with Zero to Three
  • Personnel prep
  • Can we have a SIG on early childhood?

Violence Prevention/Identification & Prevention of Abuse and Neglect

  • Awareness
  • Assessment tool, procedures for identification
  • Self protection
  • Systemic changes, building and retention of trained professionals (counselors, police, teachers, higher ed)
  • Society controls and physical needs (shelters)
  • Direct support professionals
  • Early intervention/at risk measures
  • Financial exploitation
  • Guardianship/conservatorship
  • Emergency shelter preparation
  • Respite care
  • DCS, court personnel, law enforcement legal community-prosecution & defense
  • Poverty - at risk
  • Parents with disability/adult & teens
  • Dating social groups
  • Health care issues/daily personal care/annual exams

Interdisciplinary Training/Continuing Ed/Distance Learning/Technology

  • Webcasting versus interactive video
  • Accessibility issues with technology
  • Section 508 survey data collection compliance
  • AUCD tools for accessible survey tools
  • Illuminate®

Emergency Planning

  • Develop a critical review process for emergency planning materials
  • Provide cross training on awareness and sensitivity and on emergency planning
  • Develop tools and resources for emergency planners
  • Develop an "Disability Expert" certification to go into shelters and assist

Groups members: Mary "Terri" Urbano - Nashville, TN; Amy Sharp - College Station, TX; Lori Risk - Morgantown, WV; Melina Danko - Morgantown, WV

Closing Discussion
Elizabeth thanked everyone for coming and announced that the Steering Committee will meet from 12:30-1:30 today in the hotel lobby.

Meeting adjourned at 11:00 am.

Submitted by Lori Risk, NCEDC Secretary