Description: The goal of the National Gateway to Self-Determination (NGSD) is to establish a sustainable, evidence-based training system that enhances self-determination training programs that lead to quality of life outcomes for individuals with developmental disabilities throughout the lifespan.The NGSD is made up of five consortium members: the UMKC-Institute for Human Development, The Kansas University Center on Developmental Disabilities, Westchester Institute for Human Development, The University of Oregon Center on Human Development, and The University of Illinois at Chicago Institute on Disability and Human Development. Together this consortium, along with disability organizations across the nation, work to make a systems change impact by identifying, developing, and promoting resources that enhance self-determination and lead to improved quality of life for individuals with developmental disabilities.
Project Contacts: Carl F. Calkins, 816.235.1755, firstname.lastname@example.org
Project Period: 2008-2013
Project Funding: $4,000,000 over five years
Funding Source: U.S. Dept. of Health and Human Services, Administration on Developmental Disabilities, award no. 90-DD-0659
Applied Research: The NGSD focused applied research efforts on five areas of need in self-determination: Aging and Life Span Issues, Health, Employment, Community Living, and Self-Advocacy. An example of a NGSD research initiative is the self-administered survey on self-determination. Using a specially designed iPad interface that allows self-advocates to understand and navigate survey questions by themselves, NGSD researchers have collected data from over 200 self-advocates related to opportunities for self-determination.
Community Services and Supports: The consortium was charged with providing community services and supports aimed at scaling-up self-determination on a statewide level. IHD is supporting the activities of the Missouri Self-Determination Association (MoSDA), an organization that includes Senate Bill 40 County Boards, ARC chapters, provider organizations, parents, and self-advocates. MoSDA believes individuals with disabilities should plan their own lives, pursue what is important to them, and have a meaningful role in the community.
Information Dissemination: The NGSD has a variety of initiatives focused on information dissemination, including the Special Issue of the journal Exceptionality (v 19, no. 1, 2011) entitled ”Scaling Up Efforts to Promote Self-Determination.” Articles included in this volume highlight a social-ecological framework upon which all NGSD activities are based. The NGSD also published the ”Research to Practice in Self-Determination” series, the purpose of which is to describe key issues in the field of developmental disabilities that can be enhanced through efforts that promote self-determination. The series includes six issues that cover the following topics: self-advocacy, employment, health, family, aging, and post-secondary education. The NGSD also has a vital web presence (www.ngsd.org), which highlights stories, NGSD products, and a Resource Guide, which is a national listing of recommended programs and resources to promote self-determination that can be utilized by all constituencies including people with developmental disabilities, professionals, direct support personnel, parents and siblings, educators, and self-advocates. The NGSD website includes an accompanying YouTube Channel that features nearly 50 videos of self-advocates who discuss self-determination in their lives.
Program Need and Historical Context: The preeminent need for people with developmental disabilities, a need that is the same for all people in our society, is to achieve a higher quality of life; a life that includes family, friends, and community engagement with its array of supports and services. Enhancing self-determination continues to be a widely referenced and highly valued goal that influences national legislation, federal and state policy, and practice in the field, and that is collectively agreed on as important to improve the quality of life of people with disabilities. Building a gateway to inclusion requires the application of social science that is based on a clear, evidence-based understanding of the social and environmental conditions that either enhance or limit one’s adaptation and growth.
The NGSD addresses these needs through evidence-based practices that are acceptable to people with developmental disabilities, along with its description of the positive outcomes generated through these practices. It is a myth that you can just “train away” developmental disabilities, but you can minimize the challenges in one’s life by helping both the person and environment to grow and adapt.
Consumer and Community Involvement: A primary objective of the NGSD is the inclusion in every phase of the project of “all the players” in the disability community, from University Centers for excellence in Developmental Disabilities, to government agencies, and most importantly to individuals and families.
Significant Project Activities and Projected Outcomes
- Development of the National Gateway to Self-Determination website, which includes sections on SD in Practice, Scaling Up SD, SD News & Events, SD Links, and the SD Resource Guide.
- Identification of numerous curricula and training materials, available on the the NGSD Resource Guide.
- Sponsorship of the SABE 2010 National Conference in Kansas City, Missouri.
- The Story-Telling Initiative, which has resulted in video documentation of 50 self-advocates discussing self-determination in their lives.
- The Self-Administered Survey on Self-Determination project using iPads, which resulted in data from nearly 300 self-advocates.
- Grant proposal development
- Co-Principal Investigator and program manager
- Website creation and maintenance
- Scale-up self-determination in Missouri in partnership with the Missouri Self-Determination Association
- A Special Issue of Exceptionality (vol. 19, no. 1) entitled “Promoting Self-Determination,” which includes comprehensive articles presenting a social-ecological model of intervention in self-determination.
- Publication of the booklet, “National Gateway to Self-Determination, A National Training Initiative.”
- Publication of the booklet, “What is Self-Determination and Why is it Important?”
- Publication of the first issue of Research to Practice in Self-Determination, entitled “Self-Determination and Self-Advocacy.”
- Publication of “Advising Through Self-Determination: An Information Guide for Advisors.”