HealthMatters for People with Intellectual and Developmental Disabilities: Building Communities of Practice for Health
A Research to Policy Brief from AUCD and UIC's RRTCDD
The emergence of accessible health promotion initiatives for people with intellectual and developmental disabilities (IDD) over the past 20 years demonstrates great promise for improving their health status. However, people with IDD continue to experience numerous age-related health issues and often lack control over environments and practices that impact their health. Determining successful scale-up processes of "what works" is critical in being able to achieve the goal of improved lives for the greatest number of people.
UCEDD Grants Management: Needs Assessment for the UCEDD Core Grant
The state/Territory needs assessment is a critical first step in preparing the UCEDD 5-year core grant application (also referred to as the strategic plan). This Tip Sheet provides information specific to planning and conducting the needs assessment, and using the resulting data to inform the core grant application.
One out of every three adults aged 65 years or older in the general population falls at least once each year. For adults with intellectual disability (ID), the prevalence of falls is even higher with studies estimating a fall rate ranging from between 29% to 70%. Falls are a major cause of serious injury and hospitalization, and an important public health concern. Using baseline data from the Longitudinal Health and Intellectual Disability Study, we examined the prevalence of falls and potential risk factors for falls in adults with ID.
The Association of University Centers on Disabilities (AUCD) is pleased to announce the release of the Including People with Disabilities: Public Health Workforce Competencies. These Competencies outline recent advances in knowledge and practice skills that public health professionals need to include people with disabilities in the core public health functions - Assessment, Policy Development and Assurance. The Competencies have been developed by a national committee comprised of disability and public health experts.
Challenges, Strategies, and Guidance
This document briefly describes the major challenges associated with the inclusion and support of people with disabilities in the interdisciplinary training context, offers strategies that programs are currently implementing to address the identified challenges, and identifies some of the themes that emerged from successful LEND programs' experiences across four topic areas.
This study investigated the extent of racial and ethnic disparities in the health of adults with intellectual and developmental disabilities. Findings suggest that Black and Latino adults with intellectual and developmental disabilities have markedly worse health status than both their white counterparts with intellectual and developmental disabilities, and nondisabled adults within their racial and ethnic groups.
AUCD is a network of people, with and without disabilities, who are passionate about growing the next generation of leaders and driving positive change for people with disabilities and their families. In this 2015 annual report, we highlight six people who exemplify what it means to be an AUCD member. Their stories of leadership, scholarship, teaching, research, family, and personal achievement are but a small sampling of the activities that happen at AUCD member centers and programs across the country every day. We know you will be as inspired as we are with their stories, and we invite you to join us as we collaborate to advance the well-being of all people with disabilities and their families.
As we approach the 25th anniversary of the Americans with Disabilities Act, one of the continued areas of discussion about services and supports for people with intellectual and developmental disabilities has been around residential supports. In this joint paper, AUCD and AAIDD provide an accessible summary of the research from the past 30 years and recommendations for residential services.
Members of the AUCD Network have a Congressional mandate to educate policy makers. This guide describes the processes involved in legislation and provides suggestions for maximizing the effectiveness of your interactions with policymakers.
AUCD's fiscal year 2014 report demonstrates the strength of our network and its ability to positively impact the lives of people with disabilities and their families across the nation and territories. Through our research, education, model programs, and advocacy, we are working to create meaningful opportunities for everyone.
Promising Practice Briefs are intended to highlight projects of excellence with a goal of offering a program model from which University Centers for Excellence in Developmental Disabilities (UCEDDs) can glean inspiration for new activities and promising practices to augment their own work. A promising UCEDD practice may be a research or evaluation project, policy analysis, data assessment, outreach initiative, or awareness effort. It may provide a direct service or a supported opportunity to people with a developmental disability, indirect support to family and community caregivers, or interdisciplinary training for students, fellows, professionals, and policymakers. It may involve leadership development, community work, or clinical practice.
AUCD created this toolkit based on feedback from self-advocates who participated in these Self-Advocacy Organizational Development Grants, who expressed interest in writing grant applications. This toolkit is designed to help more self-advocacy organizations apply for grant in the future.
Geared for individuals with disabilities, this paper was produced by members of the Association of University Centers on Disabilities (AUCD) because they want to help people work together to support the self-determined transition of youth to adulthood and community life.
UCEDD Minority Partnership Grants Evaluation Report
This report was developed to guide UCEDDs and Minority Serving Institutions (MSIs) by revealing strategies, highlighting accomplishments and outcomes of the projects, and identifying lessons learned by grantees as well as provide recommendations for UCEDDs, AIDD, and AUCD. The expectation is that by informing the network, leadership from all Centers will seek out similar opportunities to create academic and clinical programs for diverse students and the individuals they will go on to serve.
This toolkit is designed to help funders who are interested in funding self-advocates and self-advocacy organizations to have a better understanding of how to work best with people with disabilities, and make sure their needs are met throughout the grant process. This toolkit is the result of needs that were identified by the Association of University Centers on Disabilities (AUCD) while providing technical assistance for a self-advocacy pilot grant project that was funded by the Administration on Intellectual and Developmental Disabilities (AIDD).
Across the nation and territories, AUCD network members and collaborators implement research based practices that impact lives and families regardless of ability, culture, age, language, or socio-economic background. This FY 2013 annual report reflects our network's on-going commitment to support and empower people with disabilities and their families to live meaningful lives; contribute to society; and to live, learn, work, and play in communities of their own choosing.
When creating a new publication or posting information, there are several aspects to keep in mind during the development phase to ensure the publication fully takes into consideration cultural and linguistic differences and representations, regardless of the methods by which that publication or piece of information is being produced and disseminated. The following guidelines, developed by AUCD in 2013, are not intended to be either requirements or a checklist that guarantees a product or piece of information is appropriate to all audiences. Rather, we hope that this document will serve as a point of reference and stimulate careful consideration for anyone writing or producing information for any audience.
When preparing a presentation for any audience, there are several considerations to keep in mind to ensure the presentation is fully takes into consideration cultural and linguistic differences of the audience and information being presented. The following guidelines, developed by AUCD in 2013, are not intended to be either requirements or a checklist that guarantees a product or piece of information is appropriate to all audiences. Rather, we hope that this document will serve as a point of reference and stimulate careful consideration for anyone preparing a presentation.
When planning a meeting, there are several aspects to keep in mind to ensure the activity fully takes into consideration potential cultural and linguistic differences of attendees and participants. These guidelines, developed by AUCD in 2013, are not intended to be either requirements or a checklist that guarantees an event or activity is fully welcoming and appropriate to attendees of all backgrounds. Rather, we hope that this document will serve as a point of reference and stimulate careful consideration for anyone planning an event or activity of any size.
This paper promotes four core concepts that are essential to the development and implementation of effective transition plans and process: (1) Self-determination should be the foundation for transition planning; (2) Transition should be viewed through a cultural lens; (3) Interagency collaboration is essential to effective transition (4) Transition planning should include all the perspectives, disciplines, and organizations that will impact the transitioning student.
This paper was written for and by directors and staff UCEDDs and LENDs with the aim of promoting a dialogue among key stakeholders and facilitating their engagement in pursuing a more comprehensive, coordinated, supportive, and successful transition process for youth with disabilities from adolescence to young adulthood. See AUCD's press release for additional information.
The nation's 43 LEND programs, part of MCHB's Combating Autism Act Initiative (CAAI), are tasked with improving the lives of children who have or are at risk for autism and other developmental disabilities in part by promoting early screening, diagnostic evaluations, and interventions. For this infographic, AUCD examined data from the past four years of LEND CAAI activities in training the next generation or providers, training current professionals, screening and diagnosis of children, and disseminating publications and products.
Strategies to Incorporate the Voices of People with Significant Disabilities in UCEDD Information Gathering and Operations
This report provides tools and strategies on how to better attune to the viewpoints of people with most significant disabilities. The focus of the report is on the inclusion of people who have traditionally faced high barriers to participation, particularly given intellectual, communication, or behavioral challenges. Strategies for inclusion that focus on flexibility and finding new opportunities to listen, as well as the use of proxy respondents, are included.
The purpose of this publication is to enhance the knowledge and skills of professionals and graduate students who compete for federal grants. The material is designed for individuals with no or limited experience in seeking competitively-awarded, public funds from federal agencies. The multimedia module is self-instructional and allows a student or professional to work through the material at their own pace. It is most relevant to the fields of education, developmental disabilities, mental health, community psychology, and human and social services.
The Research to Practice in Self-Determination Series describes key issues in the field of developmental disabilities that can be enhanced by considering efforts to promote self-determination. Seven issues will be produced, each focusing on a specific topic: self-advocacy, health, employment, community services, aging, family support, and siblings.
The UCEDD Self-Determination Self-Assessment Checklist provides the UCEDD with a straightforward tool and process to determine the degree to which its policies, practices, and personnel, at a given point in time, are promoting self-determination for people with intellectual and developmental disabilities and their families.
AUCD envisions a future in which everyone, including people living with developmental and other disabilities, are fully integrated, participating members of their communities and in which culturally appropriate supports that lead to independence, productivity, and a satisfying quality of life are universally available across the life span. View our 2012 Network Report Infographic to learn about our accomplishments in education, research, services, technical assistance, training, and more.
In collaboration with the Developmental Disabilities network, self-advocates, and allies, a series of nine regional summits across the country were held in 2011-2012 to promote collaboration, planning, and recommendations at the state and national levels. This report summarizes the goals of the Self-Advocacy Summit Initiative and describes the planning, implementation, findings, outcomes, evaluation, and feedback of the events.
This report provides information about the availability of services and support for individuals with developmental disabilities (DD) and their families, the needs of DD tribal members and their families, and tribal members' familiarity and contact with the DD Network agencies.
The AUCD Trainee Handbook is intended to be used to support AUCD network trainees with a variety of learning goals. Created by AUCD and members of the National Training Directors Council, this document will provide a consistent approach to accessing information about the network, its history, our federal partners, and the rich resources available to trainees. This handbook is considered a supplement to Trainee Handbooks provided at local programs.
This report identifies policy and service delivery issues pertaining to older adults with developmental disabilities and their families and recommends opportunities to enhance collaboration among the aging, disability, and long-term care networks.
In collaboration with the Developmental Disabilities network, self-advocates, and allies, a series of five regional summits across the country were held in the spring of 2011 to promote collaboration, planning, and recommendations at the state and national levels. This report summarizes the goals of the Self-Advocacy Summit Initiative and describes the planning, implementation, findings, outcomes, evaluation, and feedback of the events.
Increasing Trainee Survey Responses: Best Practice Methods for Obtaining High Response Rates from Trainees
Obtaining high trainee response rates to the LEND and UCEDD 1, 5, and 10 year surveys can be difficult for programs to get. To assist Centers in potentially increasing their response rates, AUCD interviewed training directors and former trainees from the 5 UCEDDs and/or LENDs with the consistently highest response rates to understand their strategies for surveying former trainees. This report describes AUCD's interviews and the practices these Centers have found to be successful.
AUCD stands with its national network of member centers to promote initiatives that train leaders, aggregate critical resources, and disseminate practices and information that support people with disabilities-all so that they can live self-determined lives. Through partnerships and the coordinated efforts of professionals, family members, and self-advocates, AUCD has made a marked difference in the lives of people with disabilities and their families in 2011.
This guide provides a university search committee with an overview of the roles, functions, and expectations for the leadership of a UCEDD. It outlines the federal requirements for UCEDDs and UCEDD Directors, as well as best practices gleaned from across the UCEDD network in the process of selecting a new UCEDD Director. Appendices provide additional information on federal legislation, technical assistance resources available from AUCD, and Director job descriptions from other UCEDDs of various university administrative homes.
Over 110 AUCD trainees attended the 2011 Disability Policy Seminar. In order to capture the experience, the 2011 AUCD Virtual Trainee Suzanne Engel asked trainees in attendance to share their thoughts by responding to three sentence-starters: "At the DPS, I...," "On the Hill, I...," and "One thing I will bring back to my program is..." This publication includes trainees' responses to these sentence-starters and provides an overview of what was learned and the impact the DPS had on trainees.
This report provides an overview of the activities of the membership of the Association of University Centers on Disabilities (AUCD) and of the AUCD Central Office over the fiscal year, covering July 1, 2009 to June 30, 2010. Despite the economic challenges that we all face nationally and in our individual states, the network had a productive and noteworthy year. Interdisciplinary training, research, and technical assistance activities grew, even in this challenging environment.
While the concept of Interdisciplinary Training may appear reasonably straightforward, the operational mechanics of developing and running an Interdisciplinary Training Program can be quite challenging. This Guide, like those before it, provides a framework from which flexible and variable programs can operate to train future leaders in the field of developmental disabilities.
The ultimate goal of a medical home is to ensure better coordination of care, via participation of an interdisciplinary team, within the medical home. It is essential for LEND trainees to understand the core tenets of medical home and how they apply to their respective fields of expertise to ensure high-quality work as part of the medical home team.
This report provides data and information on work performed in FY2009 and the impact of that work on the lives of people with disabilities by AUCD and the three national networks it supports and represents.
The Association of University Centers on Disabilities (AUCD) is a membership organization comprised of three national networks of interdisciplinary, university-based Centers dedicated to research, education, leadership training, policy development, and direct service for people with disabilities, and related centers and entities. This report provides data and information on work performed in FY2007 and the impact of that work on the lives of people with disabilities by AUCD and the three national networks it supports and represents.
The subsequent pages provide activities, resources, and suggestions to build the skills of LEND Health Administration trainees. LEND programs are encouraged to use the following competencies for both their HA trainees and their non-HA trainees.
The Association of University Centers on Disabilities (AUCD) is a membership organization comprised of three national networks of interdisciplinary, university-based Centers dedicated to research, education, leadership training, policy development, and direct service for people with disabilities, and related centers and entities. This report provides data and information on work performed in FY2006 and the impact of that work on the lives of people with disabilities by AUCD and the three national networks it supports and represents.
Created by Family Faculty in 2006, this Guidebook describes Family Mentorship activities in MCHB LEND programs.
Consumer Advisory Committees: Recommendations for Meaningful Participation of Individuals with Disabilities and Families
The Association of University Centers on Disabilities (AUCD) and its Council on Community Advocacy (COCA) collaborated on a participatory action research project exploring meaningful participation and effectiveness of Consumer Advisory Committees (CACs) at University Centers for Excellence in Developmental Disabilities (UCEDDs).
In the current environment, many contracts and grants are requiring documentation of activities concerning cultural competence and/or sensitivity, including self-assessments and training. Therefore, the purpose of the instrument is to assist organizations to assess their progress towards cultural competence, both at the organizational and individual level. Created by an AUCD workgroup in 2004.
A document created in 1987 by an AUCD (AAUAP) work group discussing the participation of the Health Administration discipline in training programs.