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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

 

 

 
 

NEW ON THE COLA
WEB PAGES

 
Cover page for the Journal of Vocational Rehabilitation

5/25/2023

Perspectives on the Implementation of Pre-ETS Services: Identification of barriers and facilitators to early career planning for youth with disabilities

There are differences between and within states in the delivery of Pre-Employment Transition Services (Pre-ETS) for students with significant disabilities early in their career planning process. This complicates the delivery of services for these youth with disabilities (YWD) and leaves gaps in communication between families, educators, and vocational rehabilitation (VR) counselors.

 
 
Cover page of the Journal of Vocational Rehabilitation

5/25/2023

Researchers Call for Systemic Changes to Improve Career Prospects of Young People with Disabilities

A deeper level and different kind of coordination, collaboration, and cooperation are needed to narrow the gap in employment opportunities between youth and young adults with and without disabilities. Experts present strategies to challenge the status quo that young people with disabilities face in the transition from school to employment in a special issue of the Journal of Vocational Rehabilitation.

 
 
L-R Laury Scheidler, MSW and Audrey Wood, CCC-SLP

5/18/2023

Iowa Recognizes the 2023 Healy Award Winners

Each year, the Center for Disabilities and Development (CDD), Iowa's UCEDD, recognizes trainees from the Iowa LEND program with the Alfred Healy Leadership Award in Developmental Disabilities. The award is intended to nurture in the recipients a life-long commitment to leadership in developmental disabilities to carry on Dr. Healy's legacy for future generations. Dr. Healy's long-term leadership is still felt in the CDD clinics, the UCEDD and the Iowa LEND program. The Healy Award is intended to facilitate additional leadership development activities. This year's award winners are Laury Scheidler and Audrey Wood.

 
 

5/17/2023

A Qualitative Investigation on COVID-19 Vaccine Hesitancy in Neurodivergent Communities

Over the course of 2 years, the student led group, Neurodiversity Health Chats at UCLA has published their explorative work on vaccine hesitancy in the neurodivergent community!

 
 
A toddler-aged white boy with Down syndrome looks to the camera. He has straight brown hair, green eyes, and a red T-shirt.

5/17/2023

Vanderbilt Kennedy Center (TN IDDRC, UCEDD, LEND) Member Works to Improve Sleep Assessment in Down Syndrome Research

Vanderbilt Kennedy Center (VKC) member Sarika Peters, Ph.D., received a VKC Director's Strategic Priorities Grant to determine the feasibility of use of a wearable sensor to assess sleep in children (ages 4-10 years) with Down syndrome. Down syndrome is estimated to occur in 1 out of 700 babies and is associated with many co-occurring conditions including obstructive sleep apnea (OSA). OSA impacts between 50-79 percent of individuals with Down syndrome and the American Academy of Pediatrics recommends screening for OSA in children with Down syndrome starting at age 4.

 
 

5/16/2023

Aggie ACHIEVE Ring Day

On Friday, April 14 the seven juniors and four seniors from the Aggie ACHIEVE program received the first-ever Aggie ACHIEVE Rings in a ceremony at the Rec center at Texas A&M. The ACHIEVE Ring represents the students' dedication to excellence in their 4 year certificate program of Interdisciplinary Studies. We are so proud of each student's accomplishments!

 
 

5/15/2023

Autism and the Dysregulated Arousal System

By Rebecca Grzadzinski, Kattia Mata, and Jose Rodriguez-Romaguera, The Carolina Institute for Developmental Disabilities - UNC IDDRC

How do babies learn to be social? Babies are born into the world with so much to learn, from basic body movements to complex communication and interaction skills. Philosopher John Locke believed that babies are born into the world as "blank slates" (tabula rasas)-everything to learn will be gained from their environment and experience1. Indeed, environment and experience are critical for learning-studies on enriched environments highlight this. However, research continues to highlight the influence of inherent characteristics, underlying neurobiology and genetics on how and what we learn or know. Researchers aim to understand what and how we learn by studying the dynamic interplay between inherent biological traits, physiological states, and the environment.

 

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