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

 

 

 
 

Upcoming Events
of Interest to
COCA Members

Sex Talk for Self-Advocates Webinar #8: Parenting  Copy to Calendar
Tuesday, January 26, 2021 - Tuesday, January 26, 2021

Crisis Standards of Care During the Covid-19 Pandemic: Is It Ever OK to Discriminate?  Copy to Calendar
Tuesday, January 26, 2021

Prepared4ALL Town Hall  Copy to Calendar
Wednesday, January 27, 2021

Virtual Release of the Annual Disability Statistics Compendium  Copy to Calendar
Tuesday, February 9, 2021 - Friday, February 12, 2021

AIR-P Presents: The Needle Anxiety Program at UCLA  Copy to Calendar
Tuesday, February 16, 2021

More Events >

 
 

NEW ON THE COLA
WEB PAGES

 

10/19/2020

Telehealth: What is it? And how to make it work for you!

The University Center for Excellence in Developmental Disabilities at the Oregon Health & Science University is excited to share a recently created series of 4 animated video modules on Telehealth. They were designed for adults with I/DD and, more specifically, for people who use communication supports. They would also be appropriate for kids (and families), and individuals who experience cognitive or language or literacy challenges.

 
 

10/13/2020

MN UCEDD Pinpoints Autism's Reach

To better quantify the prevalence of autism across Minnesota, investigators at University of Minnesota's Institute on Community Integration (MN UCEDD) will tap into large statewide education and social services databases under a new grant from the Centers for Disease Control and Prevention (CDC).

 
 

1/18/2021

AUCD Professional Fellows Alumnae Win Global Zero Project Awards

AUCD Professional Fellows alumni Gwaliwa Mashaka (Fall 2018) and Aneth Gerana (2020) from Tanzania have received 2021 Zero Project Awards, which honor the world's best innovations in disability inclusion every year. Gwaliwa and Aneth, who both have lived experience with disability, are being celebrated for leading historic inclusive employment initiatives in Tanzania that they developed with advice from senior faculty at the Nisonger Center and the UCLA Tarjan Center.

 
 

1/13/2021

AUCD 360 - January 2021

 
 

1/12/2021

Plain Language Advisory Group

In 2020, the UCEDD Resource Center created a Plain Language Advisory Group. The group met to help the UCEDD Resource Center think about plain language and create plain language adaptations of resources. We want to share with the network about the importance of plain language and some lessons we learned from this work so far.

 
 

1/11/2021

Vanderbilt Kennedy Center Researcher Documents How COVID-19 Multiplies Stress and Trauma for People with a Disabilities

In a article published in Rehabilitation Psychology, Anjali J. Forber-Pratt, Ph.D., assistant professor of Human and Organizational Development and a Vanderbilt Kennedy Center (TN IDDRC, UCEDD, LEND) member, reviews research on disabilities and COVID-19 to help rehabilitation psychologists mitigate the effects of the added stress of the pandemic. In addition, the work addressed how systemic discrimination against people with disabilities intersects with other forms of inequity.

 
 

1/11/2021

#WhatsYourPurpose2021 Youth Transition Campaign

The Institute for Disability Studies (IDS) Transition to Adulthood Programs announce a new 2021 campaign, #WhatsYourPurpose2021. Throughout the year, transition leaders including youth/young adults with and without disabilities, their family members and those that serve them will be featured in short videos and social media posts promoting transition successes and challenging others to pursue their goals. Each video and post will highlight young adults and members of their support networks sharing their future life purposes.

 
 

1/11/2021

A Virtual Mock Developmental Assessment: Interdisciplinary Collaboration and Leadership During COVID-19

The Alaska LEND Without Walls is a program that has embraced video teleconferencing as a method to reach faculty and fellows across the geographically vast state. During the current pandemic, the Alaska LEND program utilized a virtual environment for all activities. As part of the annual fall semester "face to face" seminar, interdisciplinary faculty and fellows participate in a mock developmental assessment.

 
 
NH-ME LEND logo, Rylin Rodgers, Liz Weintraub and Lauren Blachowiak

1/11/2021

Lived Experience and Leadership: Self Advocates and Family Members in the Disability Rights Movement

Each fall, the NH-ME LEND Program conducts a leadership intensive on the history of disability. This year, the session was reworked to cover the history of the disability movement. Trainees were asked to watch the 2020 documentary, Crip Camp, and to reflect upon how this innovative inclusive summer camp for teenagers with disabilities during the 1970's helped to mobilize a generation of disability rights activists and energize the independent living movement.

 
 

1/11/2021

Planning Accessible Meetings Guide Updated

Planning Accessible Meetings and Conferences: A Suggested Checklist and Guide (PDF) is a free resource developed by the University of Maine Center for Community Inclusion and Disability Studies (ME UCEDD) in partnership with Speaking Up for Us, a Maine organization run by and for adults who live with developmental disabilities.

 
 

1/11/2021

South Dakota UCEDD Provides National Deaf-Blind Training for Educators

Through a collaboration with the National Center on Deaf-Blindness (NCDB) and the Center for Disabilities Deaf-Blind Program, an online 4-course training series has been developed titled, Concentration in Deaf-Blindness and High Intensity Support Needs. This series provides an incredible foundation in deaf-blindness, training in communication strategies, assessment and instructional planning and life planning for educators working with students with deaf-blindness and/or students who have high intensity support needs.

 
 

1/8/2021

Act Early Ohio Initiative

The UCCEDD was awarded a one-year grant from the Centers for Disease Control and Prevention (CDC) to build upon existing Ohio Act Early Ambassador activities. The goal of the initiative is to increase awareness about the importance of developmental screening in early childhood and tracking of developmental milestones with the support of the evidence-based Learn the Signs Act Early materials developed by the CDC.

 
 

1/8/2021

Delivering on the Promise of Employment First for Students with Significant Disabilities

The University of Kentucky Human Development Institute - HDI, the Kentucky Department of Education, and the Kentucky Office of Vocational Rehabilitation are pleased to announce Delivering on the Promise of Employment First for Students with Significant Disabilities, a four-part webinar series designed to support Kentucky school districts in their efforts to create meaningful work experiences leading to competitive integrated employment for students with significant disabilities.

 
 

1/8/2021

Disability and the Democratic Process

Co-authored by Maureen van Stone, Director, Maryland Center for Developmental Disabilities

This election season highlighted the double disparity the disability community faces to engage in the democratic process, as this group is simultaneously fighting for both the right to vote and access to voting. These barriers to voting persist in large part because of the pervasive negative views of disability that challenge societal inclusion.

 
 

1/8/2021

Disability Reads

Wendy Spoon, Oklahoma LEND Trainee, Parent/Family Discipline

Reading is something my family enjoys. Having a family member with a disability means that we enjoy seeing representation in our book choices. There are a lot of great disability reads out there. Here are just a few that we added over the holiday season.

 
 

1/8/2021

Vanderbilt Kennedy Center and Other Vanderbilt Disability Inclusion Programs Receive National Recognition

Several Vanderbilt University diversity and inclusion programs are being recognized by a federal office with a strong commitment to protecting workers, promoting diversity and enforcing nondiscrimination laws for government contractors. The U.S. Department of Labor's Office of Federal Contract Compliance Programs website lists the Vanderbilt Kennedy Center (TN IDDRC, UCEDD, LEND), Next Steps at Vanderbilt, Frist Center for Autism and Innovation, Divinity Friendship House @ Vanderbilt, and InclusAbility initiative among its sample disability and inclusion resources that meet the agency's criteria.

 
 

1/6/2021

Georgia State University, Emory Supporting 187 Georgia Nursing Homes COVID-19 Response via Project ECHO

As of Fall 2020, nearly one-quarter of the known COVID-19 deaths in the United States have been nursing home residents and staff. Advanced age, underlying frailty, and communal living conditions make nursing home residents especially vulnerable, and their reliance on nursing home staff members put these essential workers at high risk. The CDC and State of Georgia have prioritized nursing home residents and staff members to be the first to get the vaccine.

 
 

1/4/2021

Bronx UCEDD Publishes Mapping of ASD Rates in Children by Language and Socio-Demographics in NY State

The Rose F Kennedy UCEDD's Research Coordinator, Ms. Katie McGrath, MSW, 'ABD' led this spatial analysis of data from the NY State Department of Education. In contrast to prior research on ASD prevalence, school districts with higher proportions of Black and Hispanic students had the highest rates of ASD.

 
 

1/4/2021

Disability and Health Journal: The importance of seasonal influenza vaccination for people with disabilities during the COVID-19 pandemic

Co-authored by Georgina Peacock, A. Blythe Ryerson Ram Koppaka and John Tschida

A large proportion of Americans have at least one disability and yet people with disabilities face inequities in health and health care access. Factors associated with underlying disability and health, how they perceive and interact with the world, and where they live, or work may increase the risk people with disabilities face for illness or severe outcomes from seasonal influenza. Given the need to reduce the burden of respiratory illness on a healthcare system already overwhelmed by the COVID-19 pandemic, maximizing seasonal influenza vaccination coverage is particularly important in 2020-2021. It is critical this season to ensure equitable access to influenza vaccination for people with disabilities. Providing influenza vaccination services in the unique places where people with disabilities are living, working, or receiving care during the COVID-19 pandemic is crucial, as well as communicating effectively to people with different types of disabilities.

 
 

1/4/2021

MN LEND Fellow Challenges Disability Stigma in Zambia

More than 7 percent of Zambia's children have disabilities, and nearly half have never attended school. Many lack health services and experience isolation and stigma in their communities. Four the last four years, however, Renee Hepperlen (MN-LEND 2011-12) has been part of a multi-disciplinary team working to train local nurses, therapists, and other professionals in infant and child development, early intervention, daily living skills, positive language around disability, and disease prevention.

 

More >