National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities

Setting a National Agenda for Self-Determination and Self-Advocacy Research, Practice, and Policy
In August 2015, a National Goals in Research, Policy, and Practice working meeting was held in Washington, DC to summarize the current state of knowledge and identify a platform of national goals, organized by 10 focus areas, in research, practice, and policy in intellectual and developmental disabilities. The products were developed in each strand for a variety of audiences with the overarching goal of advancing a research agenda that will influence policy and practice for and with people with intellectual and developmental disabilities over the next 10 years.

View Self-Determination and Self-Advocacy Issue Brief, AAIDD Inclusion Journal Article, and Video

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Edited by Tamar Heller & Alan Factor
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Heller, T., Nelis, T., Collins, S. & Pederson, E.L. (2012)

This guide explains to people with disabilities how they can participate in research and training projects, describes what research and training is, and what a participant can do. It also provides examples of projects and of ways to address problems others have had when working on research and training. It was developed by the Rehabilitation Research and Training Center on Aging with Developmental Disabilities and the National Gateway to Self-Determination.  It is also on the National Gateway to Self-Determination website http://www.aucd.org/ngsd/template/index.cfm.
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Self-Determination Across the Life Span: Issues and Gaps (2011). Heller, T., Schindler, A., Palmer, S.B., Wehmeyer, M.L., Parent, W., Jenson, R., Abery, B.H., Geringer, W., Bacon, A. & O’Hara, D.M. In Exceptionality: A Special Education Journal – Special Issue on Self-Determination, 19 (1), 31-45. Read More...

Introduction to the Special Issue on Scaling Efforts to Promote Self-Determination of People with Developmental Disabilities (2011). Calkins, C., Wehmeyer, M.L., Bacon, A., Heller, T. & Walker, H.M. In Exceptionality: A Special Education Journal – Special Issue on Self-Determination, 19 (1), 2-5. Read More...

Lessons Learned in Scaling Up Effective Practices: Implications for Promoting Self-Determination Within Developmental Disabilities (2011). Bacon, A., Walker, H.M., Schwartz, A.A., O’Hara, D.M., Calkins, C. & Wehmeyer, M.L. In Exceptionality: A Special Education Journal – Special Issue on Self-Determination, 19(1), 46-60.

Personal Self-Determination and Moderating Variables That Impact Efforts to Promote Self-Determination (2011). Wehmeyer, M.L., Abery, B.H., Dalun, Z., Ward, K., Willis, D., Amin-Hossain,A., Balcazar, F., Ball, A., Bacon, A., Calkins, C., Heller, T., Goode, T., Dias, R., Jesien, G., McVeigh, T., Nygren, M., Palmer, S.B. & Walker, H.M. In Exceptionality: A Special Education Journal – Special Issue on Self-Determination, 19 (1), 19-30.

What Does Participation Mean? An Insider Perspective From People With Disabilities (2008). Hammel, J., Magasi, S., Heinemann, A., Whiteneck, G., Bogner, J. & Rodriguez, E. Disability and Rehabilitation, 30 (19) 1445-1460

Who Did What? A Participatory Action Research Project to Increase Group Capacity for Advocacy (2008). Garcia-Iriarte, E., Kramer, J.C., Kramer, J.M. & Hammel, J. Journal of Applied Research in Intellectual Disabilities, 22, 10-22.

Photovoice as Participatory Action Research Tool for Engaging People with Intellectual Disabilities in Research and Program Development (2008). Jurkowski, J. Intellectual and Developmental Disabilities, 46 (1)1-11.

Photovoice With Vulnerable Populations: Addressing Disparities in Health Promotion Among People With Intellectual Disabilities Research and Program Development (2007). Jurkowski, J., Paul, A. Health Promotion Practice, 8(4) 358-365.

Use of State Institutions for People with Intellectual Disabilities in Illinois (2006). Nelis, T. & Rizzolo, M.

This brief describes residential services in Illinois.  It reports the number of people with I/DD in different types of residential settings and compares the cost of institutional care to living in small homes in the community.

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Use of State Institutions for People with Intellectual Disabilities in the United States (2005). Nelis, T. & Rizzolo, M.

This brief reports the number of people with I/DD living in state-operated institutions in each state.  It also reports the total number of people with I/DD living in different types of residential settings in the United States.

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Nursing Care Resources for Individuals With Intellectual and Developmental Disabilities Across the Life Span (2003). Marks, B.A., Brown, A., Hahn, J.E. & Heller, T. The Nursing Clinics of North America: Intellectual and Developmental Disabilities, 38(2), 373-393.
http://www.sciencedirect.com/science/article/pii/S0029646502000725 Read More...

Promoting Sexuality Across the Life Span for Individuals with Intellectual and Developmental Disabilities (2003). Ailey, S.A., Marks, B.A., Crisp, C. & Hahn, J.E. The Nursing Clinics of North America: Intellectual and Developmental Disabilities, 38(2), 229-252

Leadership by People with Disabilities in Self-Determination Systems Change (2002). Powers, L.E., Ward, N., Ferris, L., Nelis, T., Ward, M., Wieck, C. & Heller, T. Journal of Disability Policy Studies, 13(2), 125-133.

Building Community Coalitions With People With Disabilities and Their Families: An Empowerment Approach (2001). Keys, C.B. & Factor, A.R. Journal of Prevention & Intervention in the Community, 21(2), 91-112.

Later-Life Planning: Promoting Knowledge of Options and Choice-Making (2000). Heller, T., Miller, A., Hsieh, K. & Sterns, H. Mental Retardation, 38(5), 395-406.

Person-Centered Planning for Later Life: Death and Dying - A Curriculum for Adults with Mental Retardation (2000). Sterns, H.L., Kennedy, E.A. & Sed, C.M.

This training curriculum helps adults with mental retardation understand death, dying and loss. It covers the concept of death; experiencing and coping with grief, mourning, comfort, and support; and death-related rituals (visitations and funerals). The curriculum consists of five in-class lessons and one field trip, which emphasize active participation through both verbal and visual presentation of materials. The instructor's guide provides a script for each lesson and includes guidelines for planning and administering each lesson. Each participant has a student notebook that accompanies the instructor's training curriculum. Each participant chooses a support person to help him/her review the lessons and complete assignments.

(Instructor's Guide) 
COST PER UNIT: $35.00 + Shipping for Guide and Notebook*
(Student Notebook) 
(Additional Student Notebooks are $12.50 each)

Making Choices As We Age: A Peer Training Program (1996). Heller, T., Preston, L., Nelis, T., Brown, A. & Pederson, E.

This is a curriculum for training persons with disabilities and their co-trainers how to teach other adults with mental retardation about: choice making, rights and responsibilities, how to make healthy choices, and things to do in their free time. The Trainer's Guide uses a "train-the-trainer" approach so the persons with disabilities who are trainers and their co-trainers can learn how to teach effectively and how to administer each module. The Coordinator's Guide provides guidelines for administering the training program and for building support for peer trainers and the other participants who they, in turn, train.

COST PER UNIT: $55.00 for Trainer's Guide and Coordinator's Guide+Shipping
(Additional Trainer's Guides are $25.00 each)

Voices That Count Training Package (Videotape, DVD, or Audio Cassette) Presenter's Guide (1993), Pederson, E., & Chaikin, M.

Voices That Count prepares people with developmental disabilities to present to boards, committees and other decision-making groups about how to involve people with developmental disabilities. It empowers people to become part of the decision-making process that affects their own lives. Through Voices That Count, people with developmental disabilities will learn how to approach and present to professional and community organizations about the leadership roles and contributions people with developmental disabilities can make. Speakers will also learn how to give boards and committees ideas on how to recruit, support, and build partnerships with people with developmental disabilities.

COST PER UNIT: $85.00+Shipping

Person-Centered Planning for Later Life: A Curriculum for Adults with Mental Retardation (1993). Sutton, E., Heller, T., Sterns, H.L., Factor, A. & Miklos, S.

This research-based curriculum enables adults with mental retardation to actively plan for their later years by teaching aging concepts and choice making skills. The 20-week training, which includes a student notebook, provides classroom and community experiences for making choices regarding healthy aging, free-time activities, work and retirement, and improving living arrangements.

COST PER UNIT: $55.00 for Curriculum and Trainer's Guide+Shipping
(Available in English, Dutch and German)