Council on Leadership in Advocacy (COLA)

 

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The AUCD Board of Directors has established a number of Councils and Committees that are made up of experts in the field to help the Board address emerging trends and issues, and to facilitate communication across and beyond the AUCD network. The Council on Leadership in Advocacy, also known as COLA, is made up of individuals with disabilities and family members from each University Center across the AUCD network.  COLA members are involved in Community Advisory Councils at University Centers for Excellence in Developmental Disabilities (UCEDDs), AUCD Councils and Committees, AUCD Special Interest Groups, and other advocacy opportunities.  Membership is open to anyone in the AUCD network. However, each center will designate an individual representative who will cast one vote when a matter before the Council requires such action.

 

 

 
 

Mission

The mission of the AUCD Council on Leadership in Advocacy (COLA) is to advise and assist the AUCD network to enhance the quality of life for individuals with developmental disabilities and their families. COLA works to enhance AUCD by fostering and supporting current and new leaders with lived experience of disability, including their family members in order to promote this same leadership in their programs, communities, and regions, and to serve in liaison roles with local disability leadership. The Council helps the association to:

  • Build effective partnerships with other AUCD Councils and Committees, federal agencies, and other national disability groups.
  • Build the capacity of local University Center Consumer Advisory Committees (CACs), including identifying needs for assistance, providing technical assistance, and disseminating information about exemplary and innovative practices.
  • Envision, actively advocate for, and disseminate information about the next generation of policy and practice that will help make the promise of full participation a reality.
  • Develop leaders and mentors that build the capacity of the network to affect change at the local, state, and national levels.
  • Assist in the development of standards for participation of people with disabilities and family members in UCEDD education, research, and service programs and in AUCD functions.
  • Serve as a model and resource for others desiring to infuse the participation people with disabilities and family members into program planning, research, and evaluation.

 

 

 
 

Purpose

The purpose of the Council is to enhance the Association by fostering current and new leaders with lived experience of disability, including their family members, to promote leadership in their programs and communities. Council membership will expand to include directors, faculty, staff, and advisors at center programs, and CAC members.

 

 
 

History

The Council on Consumer Affairs first convened in the fall of 1994; the name was later changed to the Council on Consumer Advocacy. The Council was formed as a result of AUCD's (formerly AAUAP) increasing recognition of the importance of receiving consistent and ongoing consumer feedback. Start-up activities were funded by the Administration on Developmental Disabilities, through a Project of National Significance entitled "Leadership and Choices." Principle support was provided by Bruce Eddy of AUCD and Carl Calkins of the University of Missouri/Kansas City, Missouri's UCEDD.

The Council leadership structure includes several internal committees and two co-chairs. 1998 By-Laws stipulate that one co-chair must be an individual with a disability, and the other be the family member of an individual with a disability. The three-year, staggered co-chair positions carry with them a slot on AUCD's Board of Directors.

Full Council membership consists of one representative of each UCEDD, designated by that UCEDD's director. The Council continues to strive to meet its long-term goal of full membership.

In 2003-2004, AUCD made a commitment to revitalize the role of COCA within the network. Past President of AUCD, David Johnson appointed an ad hoc COCA Workgroup. This workgroup, chaired by Carl Calkins, solicited feedback from the AUCD network and met several times to develop a renewed vision to strengthen the role of COCA. A final set of recommendations was produced and presented to the board and UCEDD Directors at the UCEDD Directors' retreat May 2-3, 2005 in Chicago, IL.

 

 
 

COLA Leadership

 

  • Co-Chair: Melanie Davis
    Email: melanie.davis at unmc.edu
  • Co-Chair: Linda Russo, MAEd
    Email: lvrusso at uab.edu
  • AUCD Liaison:  Rebekka Willis, emailrwillis at aucd dot org

 

 

 
 

Upcoming Events
of Interest to
COCA Members

More Events >

 
 

NEW ON THE COLA
WEB PAGES

 

1/27/2023

Biomarkers Can Help Improve Clinical Trials for Children with Neurodevelopmental Disorders

Sara Jane Webb, University of Washington IDDRC

In the past decade, many large-scale randomized controlled pharmaceutical clinical trials for children with neurodevelopmental disorders have struggled to demonstrate child clinical changes. In a recent study, researchers from University of Washington IDDRC discuss how biomarkers can help improve clinical trials for children with neurodevelopmental disorders.

 
 

1/17/2023

Zebrafish Advance as a Model Organism for Fragile X Syndrome

Fragile X Syndrome is the most common inherited form of autism, caused by variants in the FMR1 gene. Scientists have developed animal models of the disorder to better understand the consequences of the genetic mutation and to see if they can intervene. In a recent study in The Journal of Neuroscience, Geoffrey Goodhill, PhD, Professor of Neuroscience and Developmental Biology at Washington University School of Medicine, and his team describe the utility of zebrafish larvae in recapitulating features of Fragile X.

 
 

1/13/2023

A Roadmap for Advancing Family-Engaged Developmental Monitoring

The purpose of A Roadmap for Advancing Family-Engaged Developmental Monitoring is to introduce and describe family-engaged developmental monitoring (FEDM) as a key component of a framework for children's healthy development and family wellbeing that includes developmental promotion, FEDM, screening, referral, and receipt of services.

 
 

1/12/2023

PATHS Students Get Creative!

PATHS Program students participated in two art projects this semester. The first one was in October in awareness of Hispanic Heritage month, where students learned to work with crepe paper to make paper flowers. The November art project gave students the opportunity to prepare for Christmas. They learned to paint ceramic Christmas ornaments. It was the perfect time to relax and mentally prepare to finish the semester strong. All of the students did an amazing job!!!

 
 

1/12/2023

The Ohio State University Nisonger Center Launches Project STEER

The Ohio State University Nisonger Center is proud to announce the launch of our Project STEER (Stakeholders Engaged in Early Intervention Research) website! The website contains a variety of resources related to early autism intervention research and consultation, including an early autism intervention Research Agenda created by our stakeholder teams, and a Consultation Workbook to guide researchers in their efforts to collaborate effectively with autism community stakeholders.

 

More >