COCA Steering Committee MeetingFull Conference Call

25 May 2006

Attendees:
Gordon Richins, UT Co-Chair / Susan Yuan, VT Co-Chair
Carl Durocher, WI, Waisman Center / Mitchell Levitz, NY
Sharon Hauss, IN, Past Co-Chair / Laurel Ryan, UT BCDD, TN, Secretary
Karen Irek, SC / Bethany Stark, Tarjan, UCLA

ISSUES/DISCUSSION:

/ ACTION BY: /

PAR Grant Funding/Disbursements/Status:

Maggie Nygren initiated the call and a discussion about how to divide and distribute the funds for the PAR Grant. The final decisions were made according to level of need:
Melanie Tyner Wilson (KY) $1,500
Cathy Haarstad (ND) $1,000
Susan Yuan (VT) $500
Becky Raabe (N. AZ) $500
Sheley Dumas (TX) $500
Denise Lance (KS) $1,500
Sandra Sklar (NM) $1,000
Bethany Stark (Tarjan, CA) $500
Sharon Hauss (IN) $500
Norb Ryan (KY) $500
Gordon Richins (OR) $1,500 / Maggie N. will contact each center to facilitate disbursement of funds.
The Participatory Action Research project will continue to be funded by ADD for another year (July 01 2006 to June 30, 2007) for $9,500 ($10,000 less 5% administration).
The Development Team has had training on the Metadot System for file sharing. They have designed a survey for the Network to find out how much Centers are already using PAR. Angela Weaver Roebuck is compiling responses from Center Directors and will provide an update on the next COCA Steering Committee Call. Angela also presented information on the Project to the Director’s Retreat in Washington, DC recently where it was well received.
The next step will be to assign responsibility for various components of the PAR Toolkit. All components will be sent on to the Feedback Team for input. The Development and Feedback Teams will continue working over the summer on the project and will components will go to the wider COCA list serve for more feedback.
Both Teams are still accepting participants who wish to become involved in the project.
/ Angela W.-R. will update on next COCA SC call.
All – Consider participating!
Two presentation proposals have been submitted for the AUCD annual meeting. These will likely be panel discussions about the Project and current practices in Participation Action Research.
CONSUMER ADVISORY COMMITTEE REPORT:
CAC: Recommendations for Meaningful Participation of Individuals with Disabilities and Families was sent out to the COCA List Servs in May. Bethany Stark, one of the report’s four authors, reported on the presentation made to the Director’s Retreat on this product, and presented an overview of the report. Main points:
1.)  Five areas of concern/interest for CAC members: a) Need for individualized supports (such as cultural competency, child care, transportation and accessibility accommodations); b) Financial supports (for travel, stipends or honorariums); c) Need for UCEDD staff support and ongoing communication; d) Leadership Development and Orientation for CAC members; (recruitment and retention) and e) Values and Outcomes – the need for UCEDD staff to ensure that CAC members recognize the value of their input and activities
2.)  Recommendations: a) Re-assess the current monitoring tool that ADD uses – The UCEDD Program Operations and Practices Checklist – and focus more on functions of the committees, than their make-up or “form”; and b) Use the possible upcoming reauthorization of the DD Act to address areas of concern such as language (consumer still acceptable?) and whether individuals with disabilities or family members should be “counted” as such or as professionals, if they are working in the field.
3.)  Case Studies of 2 CAC’s in KY and WY / All- Disseminate to CAC’s for their use.
The five identified themes were seen as having to do with making sure that community members could participate, (a and b above), and helping them to be heard (c through e above).
Another discussion thread concerned the issue of creating alternative format publications in a simple, clear language version to assist those with or who support individuals with intellectual/developmental disabilities (I/DD). This might be an opportunity to model best practices. Questions remain about whether an alternate version would be done by AUCD, or individual UCEDDs. This may be a topic for the PAR grant to consider. /

PAR Workgroup

COCA Leadership to bring to AUCD Board?
Conference Call Participation
General discussion re: lower than normal turnout for this full COCA conference call.
Issue – conflicts with other conferences (e.g., SABE conference during this call, and happening the day before a long weekend) may have accounted for lower than expected turn-out
Issue – Policy Fellow position is assigned to support COCA, rather than full-time AUCD staff, meaning there is turn-over every year instead of continuity with members and leadership of the Council.
End of Life Workgroup
Update by Susan Y. This group has had 2 conference calls and is hoping to do a 60-90 minute Panel Presentation at the AUCD Annual Meeting. Topic “Considerations in Ethical Health Care Decision-Making for Persons with Disabilities” – case examples, interactive session, and training resources. Issues run from the sometimes controversial “beginning” of life through “end of life” considerations.
There was discussion of a Special Interest Group (SIG) being formed out of this workgroup that would also reach out to COCA for membership.
Legislative Committee:
Update by Susan Y. Need to forward notification of Leg. Committee meetings to entire COCA, make sure they are made aware of ACTION ITEMS in weekly “IN BRIEF” / L. Walker – Could you help facilitate this?
DD Act Reauthorization Workgroup has met several times. Group Leader Tom Uno has met with ADD Commissioner Pat Morrissey to discuss possible expansion and language changes. Commissioner Morrissey is considering a new Title II called “Self-Determination” that would combine Self-Advocacy, Youth Leadership Initiatives and Family Support, and would be parallel in the Councils on DD and Protection & Advocacy sections. Susan shared a Consensus Paper on Family Support done by Kansas UCEDD faculty and others (already sent, will send it again). Current politics may make it necessary to support reauthorization without “opening” the act for revisions. The Workgroup is moving forward as though everything could be changed. / Susan Y. – resend Family Support Consensus Paper (KS)
More on DD Act – COCA should have input on language changes proposed for CAC’s – for example, rename Consumer Advisory Committees “Community Advisory” or “Community Advocacy” Committees? / Co-Chairs/Steering Committee
DD Act Workgroup is currently drafting a new Title III on Direct Support Workforce Development. Updates should go to COCA list serv. /

Who is liaison between Legis. Committee and COCA?

There were questions about the possibility of $$ being attached to the new Self-Determination Title, and whether CAC funding should/would be kept separate from Core funding for UCEDDs.
The right of persons with disabilities to bear and raise children with support is another addition to the language the Workgroup hopes to add to the law.

COCA Web-Page Review

AUCD has finished its survey and is trying to make the website more user-friendly/508 compliant. May be showcased at the Annual Meeting. AUCD needs to be seen as a role model and advocate for alternative access, such as screen readers.
Another discussion about having a clear, simple language version and how that could be achieved. AbleLink was mentioned as one company that creates software for individuals with I/DD to facilitate email and internet access.
Discussion of the COCA listserv, and the difficulty of balancing too much and too little information going out to the entire group. Members were gently reminded that most messages should be of interest to a large number of individuals.

Annual Meeting Issues:

Violence Against Persons with Disabilities Special Interest Group (SIG) has asked to present to COCA for 5 – 10 minutes at our Council meeting. They want to ask COCA to assist in building more awareness within UCEDDs and the DD Network.
COCA has asked for a three-hour block of time in order to conduct our meeting. As Incoming President of AUCD, Royal Walker chairs the Planning Committee for the Meeting. There was formerly one COCA member on the committee, but this seems not to have happened this year.
Discussion of planning for accommodations for individuals with disabilities at the Hotel. Bethany Stark and Angela Weaver-Roebuck will be contacts for accommodations that are not ADA issues with the hotel. Discussion of possible number of individuals with disabilities needing accommodations and staffing. Care assistants will need breaks – can these be covered informally? Send additional thoughts and concerns to Gordon. / All – send thoughts and concerns re: Hotel and Annual Meeting Accommodations to Gordon.

Next Full COCA Conference Call

Need to have next one before the Annual Meeting – use it to market the Annual Meeting. Be mindful of Jewish holidays during fall. Please send prospective dates to Gordon so that we can choose a date soon and let COCA members get it on their calendars early! / All – Send prospective dates for next full COCA call to Gordon
New Business:
Dean Westwood of OR is looking for 4-5 COCA or CAC members who are planning on going to the Annual Meeting to be panelists for the PAR ToolKit Presentation. / All – Contact Dean Westwood via Listserv if you are interested in participating!
Meeting Adjourned.
Stay Tuned for More COCA News via Listserv!

Respectfully Submitted by Laurel Ryan

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