Research and Training Center on Full Participation in Independent Living

The Rehabilitation Research and Training Center on Full Participation in Independent Living (RTC/FPIL) had a mission to research, identify, and advance person-environment centered strategies that encourage full participation in society, among persons with disabilities representing diverse cultures, varying socioeconomic strata, and emerging disability populations. It was funded by the National Institute on Disability Rehabilitation Research.

A subsidiary of the Research and Training Center on Independent Living at the University of Kansas, the center’s research was directed toward greater community participation, the changing universe of disability, personal and systems advocacy, and community participation and wellness.

The RTC/FPIL projects were:

Greater Community Participation

• Independent Living Working Group Recommendations (PDF available upon request) address transportation, long-term care, employment, health care, and center for independent living resources.
• Full Participation in Independent Living Concerns Report Survey involved researchers and consumer consultants in gaining consumer input on how independent living can meet the needs of diverse disability populations.
• Advocacy Issues and Strategies for the 21st Century: Key Disability Rights Informants Speak Out advanced the concept of independent living through a qualitative study which interviews key informants about barriers to full participation in independent living.

Changing Universe of Disability

• Emerging Disability Groups into the Independent Living Paradigm used population-based analyses to identify and to better understand emerging populations of persons with disabilities, such as those with chronic fatigue syndrome and violence-induced neurological impairments.
• Federal Courts’ Evolving Definition of “Disability” and “Emerging Disability” looked at the changing definition of "disability" as defined by the Americans With Disabilities Act.

Personal and Systems Advocacy

• Strategies to Promote Accessible Cost-Effective Advocacy and Generic Community Services was designed to evaluate cost-effective advocacy methods and access to generic community services, with special attention to systems advocacy needs. Further, these projects developed effective advocacy packages, which can be adapted and used by persons with a variety of disabilities and needs.
• Ethnic Minorities with Disabilities Creating Changes in Their Communities was designed to determine what variables facilitate or impede use of the independent living definition and contextual framework of disability in non-majority disability populations, such Hispanic Americans, African Americans, and Native Americans.
• Development and Evaluation of a Community Disability Planning Method for American Indian Tribal Concerns Report was designed to develop and evaluate the utility of a Tribal Disability Concerns Report Method for community disability planning and building tribal disability action agendas.
• Teaching Post Secondary Students with Disabilities How to Advocate for Accommodations They Need to Succeed was designed to develop self-advocacy training for students with disabilities.

Community Participation and Wellness

• Measuring the Effects of Independent Living Services for People With Disabilities on Their Participation in Major Life Activities was designed to help understand the interaction between individuals and their environment and how it affects full participation in independent living by people with disabilities in personal assistance services, employment, and education.
• Understanding Health and Wellness Needs and Communication Networks of People With Disabilities From Ethnic and Racial Minorities identified exemplary ways to use peer networks and communication channels to enhance and maintain health and wellness for people with disabilities.
• Transforming Communities: The Center for Independent Living Economic and Quality of Life Impact developed an assessment of community economic impact fostered by centers for independent living.

The University of Kansas team consisted of Glen W. White, Ph.D., director, principal investigator; James Budde, Ed.D., co-principal investigator; Michael H. Fox, Sc.D., co-investigator and research director; Daryl Mellard, Ph.D., co-investigator; Katherine Froehlich Grobe, Ph.D., co-investigator; Dorothy E. Nary, M.A., training director; Jean Hall, M.A., project coordinator; Kathy Parker, M.S., research associate; Pam Willits, administrative assistant; and JeeHae Lim, M.A., web designer. KU affiliates were the elearning Design Lab (Edward L. Meyen, Ph.D., director; Ron Aust; Satha Phongsath, production and design coordinator; Kevin Osborn, content coordinator; Thanawan Phongsatha, production and graphic coordinator; Thomas Shorock, media production; and San Spurgin, programming) and the Work Group on Community Development and Health Promotion (Stephen B. Fawcett, Ph.D., director, and Jerry Schultz, Ph.D., associate director, with Lauren Howard, writer).

Others involved included Cherry Engineering and Support Services, Inc. (Bonnie O’Day, Ph.D., co-investigator); Washington University School of Medicine (David B. Gray, Ph.D., co-investigator; Holly Hollingsworth, Ph.D.; and Kerri Morgan, OTR); University of Illinois at Chicago (Fabricio Balcazar, Ph.D., co-investigator; Christopher Keys, Ph.D.; Brigida Hernandez, Ph.D.); University of Montana (Tom Seekins, Ph.D., co-investigator; LaDonna Fowler, A.A.S., co-investigator; Julie Clay; and Hank Scalpcane, training associate); National Council on Independent Living (NCIL) (Anne-Marie Hughey, executive director); and Association of Programs for Rural Independent Living (APRIL) (Linda Gonzales, executive director).

The RTC/FPIL National Advisory Board consisted of Michael Blatchford, director, Assist to Independence, Prescott Valley, AZ; Winnie Dunn, Ph.D., OTR, chair OT Education Department, KU Medical Center; Glenn Fujiura, Ph.D., director Center on Emergent Disabilities at University of Illinois at Chicago; Linda Gonzales, M.A., executive director, Association of Programs for Rural Independent Living (APRIL); Richard Gutierrez, M.A., disability consultant); William J. Malleris, BBA, business sector representative; Dennis Moore, Ph.D., past president, National Association of Rehabilitation Research and Training Centers; Michael T. Novak Jr., business sector representative; Michael Oxford, president, National Council on Independent Living; ADAPT member; Andrew M. Pope, Ph.D., director, Division of Health Sciences Policy, Institute of Medicine; Michael Schafer, president, Association of Programs for Rural Independent Living (APRIL), Paul Spooner, director, Metro West Center for Independent Living, Framingham, MA; Judge Hughey Walker, former member, National Council on Disability; and John Westbrook, Ph.D., director, National Center for the Dissemination of Disability Research (NCDDR).

As part of its commitment to building capacity in disability and independent living research, the National Institute on Disability and Rehabilitation Research (NIDRR), located in Washington, DC, developed a NIDRR Scholars programs to affirmatively recruit high-quality students with disabilities who have a record of academic excellence, and an interest in learning more about research and training activities in the fields of disability, rehabilitation, and independent living.

The Research and Training Center on Full Participation in Independent Living was fortunate to recruit several excellent students at the University of Kansas for this NIDRR effort to build capacity of scientists with disabilities, including Adam Burnett, Sarah Snyder, Dot Nary, Rachel Magario, and Nicole Denney.

NIDRR Project number: H133B000500