Council on Leadership in Advocacy (COLA)


About COLA

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 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.

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.



New on the COLA Web Pages



AIR-B Network Activities

The Autism Intervention Research Network for Behavioral Health (AIR-B) provides a free annual community conference to increase awareness of autism services, current research, and evidence-based interventions in the local regions of each of its network partners: University of Pennsylvania, UC Davis MIND Institute, University of Rochester, and University of California, Los Angeles. Experts in the network share their expertise and invite other prominent autism advocates to discuss topics ranging from non-clinical based autism interventions, to parent advocacy, to school-based transition supports for students with autism.



AIR-P Network Activities

The Autism Intervention Research Network on Physical Health (AIR-P), led by Karen Kuhlthau, PhD, conducts research on evidence-based interventions to improve the physical health and well-being of children and adolescents with autism spectrum disorders (ASD) and other developmental disabilities, with an emphasis on reaching underserved communities.



Autism Town Hall: Partnering with Primary Care Pediatricians, Meaningful Inclusion, and Gender Differences

The "Autism Town Hall" event, hosted by SPHARC and ITAC, was held at the 2018 AMCHP Annual Conference in Arlington, VA. It provided a platform for current and former Autism CARES grantees, as well as those working at the state systems level and other community members, to dialogue with national partner organizations and each other about priorities and ideas for how to make progress toward a coordinated, comprehensive system of services for autistic individuals. The event was an opportunity to hear from groups working on ASD/DD issues and discuss ways to promote alignment with existing efforts .



Autism Town Hall: Partnering with Primary Care Pediatricians, Meaningful Inclusion, and Gender Differences

The "Autism Town Hall" event, hosted by SPHARC and ITAC, was held at the 2018 AMCHP Annual Conference in Arlington, VA. It provided a platform for current and former Autism CARES grantees, as well as those working at the state systems level and other community members, to dialogue with national partner organizations and each other about priorities and ideas for how to make progress toward a coordinated, comprehensive system of services for autistic individuals. The event was an opportunity to hear from groups working on ASD/DD issues and discuss ways to promote alignment with existing efforts .



IACC Summary of Advances in Autism Spectrum Disorder Research 2017

The 2017 Summary of Advances provides short, plain language summaries of the top 20 research articles selected by the Interagency Autism Coordinating Committee (IACC). The studies selected for 2017 have provided new insight into potential biomarkers to predict risk of autism spectrum disorder (ASD), developmental trajectories of children with ASD, and the impact of the various prenatal exposures on ASD risk. The advances also include studies that investigated treatments and interventions for both ASD and co-occurring conditions, the impact of policy changes on ASD health care spending, patterns of injury mortality, and prevalence differences across demographic groups.



Update from the Division of MCH Workforce Development

Autism Awareness Month is a perfect time to acknowledge the many ways in which the Autism CARES grantees make a difference in the lives of children with ASD and other developmental disabilities (DD), and their families. This quarter's MCHB Minute is about our gratitude for all that you do!



Language Barriers Impact Access to Services for Children with Autism Spectrum Disorders Journal of Autism and Developmental Disorders

Racial and ethnic disparities in accessing health care have been described in children with autism spectrum disorder (ASD). In a retrospective chart review of 152 children with ASD, children of parents whose primary language was English were significantly more likely to have both social skills and communication goals within their individualized education plan (IEP) compared to children of parents whose primary language was not English.



AUCD2018: You're Invited

Colleagues, I am excited to invite you to join me in Washington, DC, on November 11-14 for the 2018 AUCD Conference - We ALL Belong Here! Achieving Inclusive Communities. This year's theme has a strong message of belonging and inclusion. I cannot think of a time in my life when it was more important to remember, celebrate, and remind others that all human beings have value, and a right to be included in their communities. This means opportunity, access, and equity in education, housing, employment, healthcare, faith communities, transportation, activities, and all aspects of community living. I am very much ...



Submit a Proposal for AUCD 2018 Today

Deadline: June 15

The AUCD Conference is one of the nation's premier places to highlight your work. Over 200 different presentations will be accepted to the conference in several different types of sessions, formatted for maximum visibility and interaction with attendees. Proposals are encouraged from students, self-advocates, family leaders, clinicians, and researchers in over 25 topics. Don't miss your chance: submit a proposal today!



Android Robot-Mediated Mock Job Interview Sessions for Young Adults with Autism Spectrum Disorder: A Pilot Study

The feasibility and preliminary efficacy of an android robot-mediated mock job interview training in terms of both bolstering self-confidence and reducing biological levels of stress in comparison to a psycho-educational approach human interview was assessed in a randomized study.Young adults with ASD were randomized to participate either in a mock job interview training with our android robot system or a self-paced review of materials about job-interviewing skills.



Do Early Caregiver Concerns Differentiate Girls with Autism Spectrum Disorders?

Given that early caregiver concerns may be different for children who go on to receive a diagnosis of autism spectrum disorder versus another developmental disability, early caregiver concerns may differ for girls. Using a community-based sample of children (n = 241), we examined the extent to which gender differences may be related to caregiver concerns prior to a diagnosis of autism spectrum disorder or other developmental disability.



AUCD Network Members Provide Expertise to Develop Inclusion Principles and Guidelines for People with Intellectual Disabilities

On December of 2017, several members from the Association of University Centers on Disabilities (AUCD) network, along with other professionals from various backgrounds, convened to form the Inclusive Health Project Workgroup. The purpose of this workgroup was to assist in creating inclusion principles and guidelines for implementing health-related activities for people with intellectual disabilities (ID). These principles and guidelines would serve to support national-level organizations to adopt and promote inclusive approaches to health for people with ID, and provide useful information for organizations on how to foster inclusion of people with ID in national organizations. This exceptional workgroup, which encompassed of directors and specialists from University Centers for Excellence in Developmental Disabilities (UCEDD), used both their professional and individual experiences in the realm of disabilities/ID to develop the Foundational Principles for Sustainable Inclusion of People with Intellectual Disabilities.



Mid-life Social Outcomes for a Population-based Sample of Adults with ASD

Adults with autism spectrum disorders (ASD) fall short of social outcomes of non‐ASD peers in mid‐life, as documented by currently published research. The aim of the current study was to extend what is known about social functioning, employment, independent living, and use of social services by examining details of the current life status for a population‐based sample of adults with ASD (mean age = 35.5 years, range = 22.2�51.4). We collected outcome data via direct assessment and informant report for 169 individuals. Three‐fourths of the sample had cognitive abilities in the intellectually disabled range. Social functioning outcomes, as a single measure, mirror those reported previously for other samples, including samples with a high proportion of individuals with normal range intellectual abilities, with 20% achieving the most independent outcomes and 46% requiring high levels of support across most life areas. Participant subgroups who achieved maximal outcomes represented a range of social and intellectual abilities for several outcome metrics. Participants used high levels of public and private supports, yet specific areas of clear, unmet need were also identified.

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Nutrition is for Everyone Ambassador Updates - Tennessee

Nutrition is for Everyone Tennessee (NIFE TN) continued distributing NIFE information (including social media connections) at the 1-day workshops for professionals and families related to intellectual and developmental disabilities. It was a good opportunity for them to provide nutrition resources to physicians, therapists, and other healthcare professionals! Four more workshops were scheduled across the state, with the last one being in mid-April, expanding their reach with health care professionals as well as families.



SPARK: A US Cohort of 50,000 Families to Accelerate Autism Research

The Simons Foundation Autism Research Initiative (SFARI) has launched, a dynamic platform that is engaging thousands of individuals with autism spectrum disorder (ASD) and connecting them to researchers. By making all data accessible, SPARK seeks to increase our understanding of ASD and accelerate new supports and treatments for ASD.



President Donald Trump's Intent to Appoint Personnel to the President 's Committee for People with Intellectual Disabilities (PCPID)

The PCPID has 31 members: 18 citizens, and 13 ex officio (federal government) members. A maximum of 21 citizen members is allowed. Citizen members are appointed by the President and serve for a maximum of two years. A variety of individuals are appointed as citizen members, including parents of individuals with intellectual disabilities, scientists and professionals from the field, community and business representatives, and systems advocates.



Iowa Lend Self-Advocate Trainee "Makes the Connection" at National Conferences

Iowa LEND's first self-advocate trainee, Ed Esbeck, recently returned from the Association of Maternal and Child Health Programs (AMCHP) national conference where he served as lead presenter on a session entitled "Developing an Inclusive and Accessible LEND Curriculum." It was Esbeck's second trip to Washington in the past three months, having attended the AUCD national conference in November.



Vanderbilt Kennedy Center (TN UCEDD, LEND, IDDRC) Offers Free Resources on Inclusive Higher Education and Stories from Families Living in Rural Counties

Two new resources are available to download free of charge from the Vanderbilt Kennedy Center (TN UCEED, LEND, IDDRC). The first, Inclusive Higher Education: Practices and Perspectives from the Southeast, is a compilation of keynote and breakout presentations from the 3rd Annual Southeastern Postsecondary Education Alliance Capacity Building Institute. The second resource is a special edition of Kindred Stories of Disability, which includes the experiences of individuals with disabilities and their families living in rural counties in Tennessee. Both resources are relevant to an audience beyond Tennessee and the Southeast.



VT LEND Self-Advocate Fellow receives Dr. Ruth Christ Sullivan Public Policy Fellowship

Ms. Nicole Leblanc, VT LEND Self-Advocate Fellow, has been awarded the Dr. Ruth Christ Sullivan Public Policy Fellowship with the Autism Society. She will assist with federal, state and local key public policy and advocacy issues impacting millions of individuals and families affected by autism spectrum disorder.



CDS Champions Jobs for People with Disabilities (HI UCEDD)

People with disabilities are working, training for jobs, or searching for better jobs. Clearly, work is important for people with disabilities. But in the search for employment, many run into barriers that rarely confront their counterparts without disabilities. Find out why this is so and learn why CDS researchers say a change has got to come--for everyone's benefit.



Portland Maine LEND Holds Annual Family Picnic

"The family picnic is the first step of our family-led experiences for LEND Trainees. We welcomed 5 families during the picnic and solicited more in the process. Each LEND trainee will be matched with a family that fits their learning goals. Host families will teach the trainees about everyday life with children with neurodevelopmental disabilities. Trainees will play, eat, and enjoy family life with their host family and in the process they will learn deep lessons that they will carry through into their leadership. Trainees may also accompany children to appointments, school planning, activities, and family experiences," explains LEND Training Coordinator, Clinical Professor and occupational therapist Dr. Kathyrn Loukas.



Vanderbilt Kennedy Center (TN UCEDD, LEND, IDDRC) Explores the Right to Make Choices

Noted disability public policy advocate Jonathan Martinis, J.D., senior director for Law and Policy at the Burton Blatt Institute at Syracuse University, delivered the Vanderbilt Kennedy Center's (TN UCEDD, LEND, IDDRC) Martin Luther King, Jr., Commemorative Lecture "Supported Decision-Making: Protecting Rights, Ensuring Choices" in January 2018.



Autism CARES/LEND Act Funding Alert

The President's FY 2019 Budget Request eliminates funding for the Health Resources Services Administration (HRSA) Autism CARES Act programs. This $47 million cut includes the $31.3 million appropriation for LEND programs. The national network of LEND programs would be eliminated. LEND directors, health professionals, trainees, families and allies must educate their Members of Congress about why this training program is important and why it must not be eliminated.



UCEDD Funding Alert

The President's FY 2019 Budget Request cuts the funding for UCEDDs by $6 million from $39 to $33 million, or more than 15%. In fact, a $5.5 million increase over the expected FY 2018 level is needed to meet the growth of scope of work as related to assisting states to effectively implement recently enacted Federal laws, and the growth of need around autism, Zika, and neonatal abstinence syndrome. UCEDD directors, health professionals, trainees, families, and allies must educate their Members of Congress about why this training program is important, how it serves your state, and why increased funding is needed.



Spectrum Learning Community To Connect Texas A&M Students On Autism Spectrum (TX UCEDD)

By Maggie Rians Texas A&M University Division of Student Affairs

The Texas A&M University Division of Student Affairs will launch a learning community in fall 2018 that will connect students on the autism spectrum.



Continue to Educate your Members of Congress on the importance of the Money Follows the Person (MFP) Program

Help people living in nursing facilities and other institutional settings move back into their community!

We applaud all advocates for their continued engagement around the important MFP program. This week is crucial for advocates to continue educating Members of Congress on the positive impact this program has had on the lives of people with disabilities. It is AUCD's hope that MFP will be included in the March 23 omnibus appropriations package. Contact your senators and representatives to educate them on the importance of MFP in order to increase co-sponsors: 03/07: call. 03/08: social media. 03/09: email.



Spread the Word to End the Word

Join us on March 7

The R-word hurts. It's offensive. It's derogatory. This worldwide campaign asks people to pledge to stop saying the R-word as a starting point toward creating more accepting attitudes and communities for all people. Language affects attitudes and attitudes affect actions. Pledge today to use respectful, people-first language.



South Dakota LEND Trainees Experience the State Legislative Process

Leadership is the first word in the full definition of LEND. Underlying leadership are a dozen MCH competencies. The South Dakota Leadership Education in Neurodevelopmental and Related Disorders (LEND), housed at the Center for Disabilities in the University of South Dakota Sanford School of Medicine, takes one of those competencies-Policy and Advocacy-and engages its LEND trainees in an immersion experience with the policy makers and influencers in the state.


Upcoming Events
of Interest to
COCA Members

2018 National Self Advocacy Conferencethe Next Steps  Copy to Calendar
Thursday, June 7, 2018 - Saturday, June 9, 2018

AUCD Leadership Academy  Copy to Calendar
Monday, June 25, 2018 - Saturday, June 30, 2018

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