NCEDC Minutes

Full Council Meeting

November 7, 2004

Hyatt Regency Hotel, Bethesda, Maryland

NCEDC Meeting Participants:

Diane Lenz Arizona
Joe Evans Nebraska
Sue Blanchard OHSU, Oregon
Bill Gaventa New Jersey
Beth Roos Kentucky
Elizabeth Bishop Tennessee
Lori Risk West Virginia
Gene Thompson New Mexico
Daisy Thompson New Mexico
Jenny Overeynder Rochester, New York
Alan Parks Maine
Shelley Dumas Texas
Linda Tuchman Wisconsin
David Helm ICI, Massachusetts
Mary Mercer North Dakota
Sandy Root-Elledge Wyoming
Marilyn Hammond Utah
James Gleason Shriver Center, Massachusetts
(Marisa Brown for) Antonia Fisher-Brathwaite District of Columbia
Tamara Heller Illinois
Dean Westwood OHSU, Oregon
Tera Yoder Virginia
Vyonda Martin Oklahoma
Lisa Lister AUCD
(Angela Martin for) Elizabeth Janks Michigan
Chigee Cloninger Vermont
Susan Yuan Vermont
Cary Kreutzer California (USC)

I. Call to Order and Introductions
Diane Lenz, Chair, NCEDC called the meeting to order at 10:15 a.m., welcoming new members to the NCEDC and old returning members. Members were asked to introduce themselves and identify presentations that they will be giving over the next 3 days (list of presentations, posters, lunch roundtables is included as Table A) and their current area of interest or new emerging issues they are addressing. Membership list was distributed for edits and corrections (see attached NCEDC Members List). Diane reviewed the agenda for the meeting and gave an overview of the Council and our purpose.

II. Approval of Minutes
Minutes from the November 2003 NCEDC meeting were reviewed with a motion to approve by David Helm and a second by Elizabeth Bishop, all member were in favor of approval.

III. Reports from Special Interest Groups and AUCD Council Meetings
Council members were asked to take notes and report back to the membership outcomes of Special Interest Groups (SIG) and AUCD Council meetings. Outcomes of the Victims of Crime SIG was reported by Elizabeth Bishop; David Helm a member of the Training Directors Council submitted a summary from that meeting (see Table B).

IV. Board Update
Diane Lenz gave a brief board update and suggested she would send out to the membership a summary of activities.

  • The Board is working toward a 2005 Summit of the Alliance for Full Participation which will be held in conjunction with the annual AUCD Meeting and Conference to be held in Washington, DC September 21-24, 2005. The Alliance was formed 2 years ago with the idea that a number of national organizations could drive the agenda for a national developmental disabilities focus. State teams that will be formed and plan for the meeting, which will address where we want to be in the next 5-10 years to improve services for persons with disabilities.
  • Diane reported that AUCD is in good shape now financially.
  • The Board has a number of standing committees that have been meeting throughout the year, they include: Communications (working on a brochure for the association); Finance; Program (looking at aging and DD, National Governors Association (NGA); Legislative (begin working on a paid relationship with lobbying organization in DC). Diane then reviewed AUCD Strategic Action Plan Goals (previously emailed to membership).
  • AUCD continues to recruit new international organizations to join the association. This year we have new members attending from Whales.

V. Committee Reports
TA Committee ( Linda Tuchman)
Transitional year - TIPS of the month has been an ongoing initiative of the group- last year lots of interest in other areas including curriculum development and cross UCEDD collaborations. This year will try to focus more on curriculum sharing, regional or collaborative activities, and hope that we can build on momentum of previous years. Committee held one conference call this past year.

Dissemination Committee (Jenny Overeynder)
This year we have updated info on the website - info is now correct but needs to be developed as there is basic info we need to add more of to the site. Need to start putting together TIPs and get info out via the listserve. Currently any listserve info needs to be sent out via AUCD secondary to virus problems. We are also looking at a message board, the Training Directors Council has a message board- new software will allow us to do live content entry if groups are working together.

Family/Consumer involvement Committee (Vyonda Martin)
This group is exploring what UCEDDs are doing to involve families in UCEDD community education activities and at the same time AUCD has put together a workgroup.

Training Symposium Committee
Shelly reported on the Training Symposium committee - Shelly took over for Debbie Gilmer - Pg. 15 in program is the Training Symposium outline.

Nominating Committee
Presented by Diane Lenz in Kathy Olson's (Committee Chair) absence. This committee nominates candidates for AUCD recognition awards. We nominated a person this year. In Spring 2005 we will need to nominate candidates for next year. We also look each year at new committee chairs, no term limits on these positions. Nomination Committee members include: Lori Katerina Risk, Elizabeth Bishop, Jean Johnson and Elizabeth Janks. Diane explained that Chair, Chair Elect and Secretary positions are up for nominations next year and described what each position would entail.

Steering Committee and NCEDC Annual Report
One page summary included in AUCD Conference Folder.

VI. NCEDC Web Site Demonstration
Jenny Overyender walked members through the new and updated NCEDC WEB pages. Suggestions for other items that should be included on the NCEDC WEB page: Products that link back to an individual UCEDD.

VII. New Business
Alliance for Full Participation Summit - discussed above, this group will set-up one day that each of the Councils will be able to conduct their business during the meeting.

VIII. Work Group Meetings
Small group discussion were held in 3 groups: UCEDD Collaboration and Networking Across Centers, Consumer and Family Involvement, Dissemination. These three groups were asked to answer the following question: what if this Council could make efforts on behalf of the network what would we want to do? A summary of group discussions and recommendations is included in Table C.

IX. Committee Meetings
Vyonda Martin volunteered to meet with the new Community Education Directors at Le Madeline for Breakfast.

X. Wrap-up and Adjourn
Meeting was adjourned at 2 p.m.

NCEDC Member Presentations
AUCD Annual 2004 Meeting

OR-ADD UP Poster: Interdisciplinary Training poster
WY-Marketing 10th Anniversary Poster Reception for Wyoming
MI- Family Support 360 poster
VT- Panel on Family Support
VT- Initiative to support parents with disabilities to retain custody
OK- Center Success presentation
VA- Information on Self-direction
ND- CMS grant stakeholders and Medicaid buy-in
DC- Cultural brokering: Multicultural council poster; Multicultural council on cultural/competency
NJ- Cultural Competence
IL- Collaboration, DMEs, and UCEDDs
NE- NSIP Round Table on Americorps Funding
ME- Universal Design on web accessibility; Teaching disabilities studies
UT- Disabilities Curriculum high school
UT- Library networking
CA (USC)- Educating physicians about Down Syndrome; Marketing approach; Best practices on Marketing/Dissemination; State Council, P & A, UCEDD Collaborations; Poster session on UCEDD Projects
WI- Family Centered Care Culturally Competence; "Sound Response" Monitoring independent living technology poster; Constituent Advisory Committee poster; Adolescent transitions
AZ- Bureau of Indian Affairs project

NCEDC 2004 SUMMARY: Victims of Crime Special Interest Group

Victims of Crime SIG
(Tuesday 7:30-8:45 p.m.)
No agenda, just discussion.

Background on Topic(s)
Group met last year and started a list serv.

Summary of information presented
Get in touch with Diane Lenz and George Jesien to get this topic on the agenda for the 2005 Summit, this needs to be a national agenda item. Inviting other national groups to the Summit. Elder abuse and as victims of crime connect with the Elder Justice Coalition. Combine forces with COCA.

Useful Information and/or Resources
Several Centers have grants and programs that are addressing crime and prevention. Virginia has web-based of modules of altreatment across lifespan, listserv and resource guide. (Kamp Children's Center Gail Ryan). Perpetratory Prevention. Nursing certification curriculum. AAMR and one chapter is on sexuality education for individuals with disabilities. Work by Dave Hainsburger, Canada. Resource Book: Sexuality: Our Sons and Daughters with Disabilities. Florida advisory committee, Abuse of Vulnerable Adults.

Next Steps/Recommendations for Action
How to include victim's services provides? Statewide group that have conferences. Feeling is that for the direct service providers and workers to get involved going to have to be sold to them as something they need. Overwork leads to apathy. Florida seems to have a very good model for serving this. How to transfer the local relationships to a wider audience and vice versa? Find a local agency to partner with you. Build relationship to trickle down to the individual worker and person. Not enough to do committees and curricula has to be on the individual to receive services. What is keeping the individual from getting the services they need that don't get in the curricula? How this topic could be highlighted at the 2005 Summit?

Submitted by
Elizabeth Bishop

NCEDC 2004 Summary: National Training Directors Council Activities

Background on Topic(s)
Review of NTDC barriers
New leadership announced:

Chair - Steven Koch (IN)
Vice Chair - Judith Holt (UT)
Secretary - Kay Conklin (MO)

Summary of Information presented
3 Work groups were presented:

  1. Trainee Linkages: How to connect trainees to each other, other UCEDDs or
    LENDs and to AUCD top ideas to be put on web pages.
  2. Trainee recruitment working on data collection from NIRS.
  3. Health Disparities Curriculum: Fine tuning curriculum for training Director's-will continues on ideas and will be posted on the web.

Next Steps/Recommendations for Action
NTDC web page can be a resource to NCEDC.

Submitted by
David Helm

NCEDC Breakout Discussions

UCEDD Collaboration and Networking Across Centers

  • Regional or national events across UCEDDs, using distance technology or face to face.
    • Telemedicine/Telehealth Video Conference (CME)
    • Have UCEDDs pool funding across common interests based on existing work
    • Write collaborative grants Sources:
      • Agency for Health Care Research and Quality
      • MCHB- Large and small grants
      • CDC, RTOI grants - seek how to do collaboratively
    • Plan for replication
      • e.g. CME Telehealth Training
      • Write up examples that work
    • Figure out who has access to what technology at reasonable rates (Survey)
    • Consider if AUCD has money to help support the technology
  • Encourage interactions/training across - P AI, DD Councils, UCEDDs:
    • Connect to summit 2005
    • Check TN model/example
    • Connect to State planning teams
  • Identify topics for quarterly teleconferences
    • Topical areas (e.g. Autism), Self-determination, family support and aging.
    • Process (e.g. how to do distance education on line)
    • Survey NCEDC for emerging issues or hot topics
    • Grow from existing UCEDD grant activities.


Consumer/Family Involvement
Cross-Council Involvement

  • Establish a mechanism for cross-council work, action, activities between COCA and NCEDC.
    • Ad. Hoc group or other mechanism to support actions brought forward by each group.
  • Gather information from each UCEDD regarding: What is your UCEDD doing to involve families and self advocates in the design, implementation, and evaluation of UCEDD community education?
    • Check NIRS first
    • E-mail an inquiry to all UCEDDs Directors, Training Directors, Community Education Directors and family/self advocate representatives
    • Collect what is already available on this topic. Reports from Nancy Johansen and Nancy Livingston
    • Identify COCA members with expertise in the training, TA, etc. in this area.
    • Identify UCEDD expertise and try materials regarding: Local expertise with Consumer Advisory Councils groups training.
  • Bring multi-cultural council members into this effort.
  • Other discussion:
    • We need to build capacity of UCEDDs to use expertise of members of COCA and others who have expertise with local consumer advisory groups.
    • AUCD and UCEDDs need to provide adequate support for consumers and families to participate in the design, implementation and evaluation of all activities.


Community Education Directors
Draft ideas for Dissemination:
Committee on Community Education/Dissemination

Alan Parks-Maine
Sandy Root-Elledge-Wyoming
Tamar Heller-Illinois
Mary Mercer-North Dakota
Beth Roos- Kentucky
Diane Lenz-Arizona
Bill Gaventa- New Jersey
Sue Blanchard- Oregon
Jenny Overeynder- New York-chair


  • What stopped the TIPS?: No volunteers, no assignments, no template.
  • Bulletin board: Does it have merit?
  • Mentoring: Does it need to be revived?
  • Website: Quality, updating?


  • Tips will be revived. Bill Gaventa will design a template (SEE NEXT PAGE). First four volunteers to put a tip in place are:
    • Mary Mercer- Self-employment
    • Alan Parks- Universal access to web. Policy systems change
    • Tamar Heller- Sibling research
    • Sue Blanchard- Add-Up
    • Suggestion is to have four new TIPS per year.
  • Bulletin board, on the bottom of the list as far as priorities go, but will be pursued.
  • Mentoring: Needs to be revived, poll people who have been in their positions for a while to see if they are willing to do so.
  • Website: Jenny O will consult with Sue Blanchard for suggestions of how to improve. The website needs to have good links to other resources.

Respectfully submitted,
Jenny C. Overeynder


Template for TIPS (Quarterly)

  1. These TIPS are meant to be short (2-5pp) summaries of successful initiatives in some area of community education. Examples could include development of a customized training and technical assistance process with a particular segment of the community, strategies in working with particular organizations or stakeholders, etc.
  2. Goal: One per quarter, disseminated to the entire NCEDC network. That means each center should participate once every twelve years!
  3. NCEDC will try to solicit volunteers at each annual meeting out of shared discussion about successful initiatives and projects.
  4. The TIP should be distributed with a question at the end asking for other UCE's who are also successful in community education projects in that area to identify themselves to the author.
  5. The author is asked to add that contact information to the end of their TIP.
  6. The completed document will then be sent to NCEDC leadership and AUCD for inclusion on the NCEDC page of the website, with the goal of building a catalogue of TIPS about successful community education strategies and resources.

Template for Requests for Information or Questions

  1. Community Education Directors are invited to ask questions about strategies, resources, trainers, etc. to the whole NCEDC listserv, by sending an email to Gwendolyn Clark at AUCD.
  2. Assuming the questioner gets a number of responses, it would be very helpful to the whole network if he/she would summarize the helpful responses and resources, and then send the question, with responses, to NCEDC Chair and/or Dissemination Committee.
  3. The Chair and/Dissemination Committee would then work with AUCD to include these questions and responses on the NCEDC portion of the AUCD website, as a resource bank that can be used by others in the future.