RTCI/IL Fall 2021 Newsletter

RTCIL Logo, the access symbol in front of some buildingsFor our partners, advisors, and stakeholders

In This Edition:  

Jean HallGreetings from the Director

Greetings from the Research and Training Center on Independent Living!

Fall 2021 is shaping up to be the season of knowledge translation. We are pleased to announce the publication of an online supplement of Disability and Health Journal in connection with the State-of-the Science Conference hosted by the Research and Training Center on Promoting Interventions for Community Living (RTC/PICL), which was presented over three webinars during the month of September. These research products culminate 5 years of work by PICL researchers on community participation for people with disabilities, with more to come.  RTC/IL researchers and our colleagues will also present at national conferences throughout the fall.

Our work under the auspices of the Kansas Disability and Health program sees us packaging the Stoplight Healthy Living program for online delivery and continued work on our index of accessible recreation opportunities in the state of Kansas.

We are excited to announce a new project, too. The Institute for Health and Disability Policy Studies has begun a study on the effects of the COVID-19 pandemic on people with disabilities, which builds upon the well-established National Survey on Health and Disability. For more information, visit Using the National Survey on Health and Disability (NSHD) Panel to Document the COVID-19 Pandemic Experiences of Working-Age Americans with Disabilities.

All the best,

Jean Hall, Director

Research and Training Center on Independent Living

IHDPS Begins Study of Pandemic Effects

The Institute for Health and Disability Policy Studies (IHDPS) has begun the study “Using the National Survey on Health and Disability (NSHD) Panel to Document the COVID-19 Pandemic Experiences of Working-Age Americans with Disabilities.” Continuing the success of the NSHD, IHDPS will partner with other NIDILRR-funded projects to collect longitudinal pre- and post- pandemic data about the health, health care, and other experiences of people with disabilities. Findings will be used to develop policy briefs, consumer resources, journal articles, and policy/practice recommendations for pandemic-related issues affecting the health and function, employment, and community living of people with disabilities. Learn more at the project webpage. 

Dot Nary to Retire

Dot NaryDorothy (Dot) Nary, PhD, will retire in December. Her 25-year career at the University of Kansas includes 20 years of service at the Research and Training Center on Independent Living and five years with the KU Gerontology Center.

Prior to joining the RTC/IL as a graduate student in 1996, Dot worked in the independent living movement in upstate New York, providing peer counseling and independent living skills training to residents with disabilities in several public housing developments. She also coordinated a cross-disability role-play group called The Looking Glass Players, which performed for community groups to educate them about barriers to community living. She started graduate school with an interest in building the knowledge base on the services that effectively promote independent living. Her research interests have focused on creating accessible communities, teaching advocacy skills to people with disabilities, health promotion, and disability-competent health care.

Dot’s many accomplishments include the first research article in the literature on the inaccessibility of fitness centers for wheelchair users, work on several successful research projects to promote physical activity for people with mobility limitations, and a study of visitability (a movement to make homes visitable by everyone) under a Switzer Fellowship from the National Institute on Disability, Independent Living and Rehabilitation Research. She has chaired several committees of the Disability Section of the American Public Health Association (APHA); served on the board of Independence Inc., the Center for Independent Living in Lawrence, Kansas; and taught courses on advocacy and disability at universities in Kansas City and Topeka. Her service activity also includes involvement with the KU Architectural Barriers Committee, the KU Transit Task Force, the Minority Recruitment Committee for the KU Department of Applied Behavioral Science, and the Faculty and Staff Council on Disability Inclusion. She was the staff advisor to AbleHawks and Allies, the KU student disability awareness group. “I have always liked Alice Walker’s assertion that ‘Activism is my rent for living on the planet.’ I’ve tried to contribute to creating the type of community that I want to live in, especially regarding communities that welcome people with disabilities,” Dot says. 

She views her role as a bridge between the research and disability communities, sharing research findings with the community in such a way that it becomes more livable for all. Although her career has seen many changes to the benefit of people with disabilities, she says there is still much work to do. People with disabilities now have more educational opportunities and a greater presence in the American workforce. While this changes the landscape, it has had only a small impact on employment figures for people with disabilities; there is still much to do to integrate the workforce. She also believes disability studies could be further integrated into many disciplines at KU, given that people with disabilities constitute a large minority: one in four adults in the US report having a disability. There will always be a need for further study, intervention, and health promotion programs. 

To people making their start in disability research, Dot says networking outside academia is important. “Misperceptions of what it like to live with a disability are rampant, so it is important for researchers to engage with people with disabilities to understand our lived experience,” she says. She also encourages young people with disabilities to gain self-advocacy skills, as the realities of living with a disability, and managing chronic health conditions, can often create barriers to educational or workplace success.     

In her retirement, Dot will continue her involvement with the APHA, and she is chairing the Healthy Built Environment Work Group of Live Well Douglas County. She also hopes to do some writing, read more for pleasure, and otherwise occupy herself having fun.

Please join the RTC/IL in thanking Dot for her tireless service to the disability research community and contributions to the quality of life for people with disabilities.

Jean Hall to Serve on NIH Advisory Group

Jean Hall, Director of the RTC/IL, joined the National Institutes of Health Advisory Group to the Director Working Group on Diversity, Subgroup on Individuals with Disabilities as an expert on  disability and health in July. The Working Group on Diversity assists with the development on diversity-related strategies for the NIH. Concerns include promoting access and opportunity in the field of biomedical research, policy change, structural change, and representation.

RTC/PICL Study Participants Report Satisfaction, Success

Fergus* is a consumer from disABILITY LINK who is blind and living with a mobility impairment. Fergus successfully completed the Out and About program, working closely with his CIL staff to set a goal of increasing the safety of his community participation. Through the Out and About program, Fergus obtained a braille watch to empower him to tell time without the public use of his phone, which allows him to feel safer when participating in his community. 

Matthew* is a consumer from disABILITY LINK living with a mobility impairment who has successfully completed Out and About. Matthew worked closely with his CIL staff to identify a community participation goal of exercising by walking around his neighborhood. Through the Out and About program, Matthew was able to set small, achievable fitness goals and has worked steadily to increase his fitness level. Since completing the Out and About Program, Matthew shared with his CIL staff that he has now built up to walking 5 miles a day and has lost 28 pounds from his increased activity. Matthew reports that the Out and About program has changed his life, and that his improved health will empower him to more actively participate in his community. 

Lucy* is a consumer from The Ability Center living with a mobility impairment who has successfully completed the Home Usability Program. Lucy worked closely with her CIL staff to identify a home usability goal of reducing fatigue experienced in her kitchen while preparing and cooking meals. Through the Home Usability Program, Lucy was able to set up an area in her kitchen to sit down while preparing food. Lucy was also able to acquire and reposition several small kitchen appliances, such as an air fryer and slow cooker, to allow her to cook while seated.

*Pseudonym created to protect participant confidentiality.

Stoplight Healthy Living Packaged for Online Delivery

Stoplight Healthy Living, a nutrition and exercise program developed by the Kansas Disability and Health Program, has concluded its in-person work and is now packaged for delivery online. The program, which is designed for adults with intellectual and developmental disabilities, presents information about healthy food choices and physical activity in plain language and includes sessions about choosing healthy foods, grocery shopping, meal preparation, and exercise for both people who can walk and stand and those who use wheelchairs. Stoplight Healthy Living is now available to all, and a facilitator manual and session materials are available at the Stoplight Healthy Living webpage. 

Accessible Recreation Opportunities Project Ongoing

RTC/IL researchers have compiled information about accessible recreation opportunities in Kansas, under the auspices of the Kansas Disability and Health Program. The resource includes information about accessible places to hike/roll, playgrounds, and physical activity programs in 20 Kansas counties. Contact Seth Coulter at sethcoul@ku.edu if you have an opportunity to contribute to the site. The resource will soon be featured in the blog of Kansas magazine, the publication of the Kansas Tourism Board.

RTC/PICL Presents State-of-the-Science Conference

The Research and Training Center on Promoting Interventions for Community Living (RTC/PICL) presented its State-of-the-Science Conference with three webinars in September. Sessions included Lillie Greiman’s findings on the effects of the Home Usability Program, “Factors Influencing Community Participation for People with Mobility Disabilities” by Jean Hall, and “Examining the Effects of the COVID-19 Pandemic on Community Engagement for People with Mobility Disability” by Lyndsie Koon. All presentations made by PICL staff are listed below under Presentations. Presentation slides and videos are available on the RTC/IL State-of-the-Science webpage. 

The RTC/IL’s conference papers will be compiled in a special online supplement of Disability and Health Journal. Topics include the impact of COVID-19 on community engagement, home usability, transportation, and social connectedness. Jean Hall, Lyndsie Koon, Dot Nary, Kelsey Goddard, Noelle Kurth, Isaac Nzuki and Jay Schulz contributed to the supplement. Links to these articles are provided below under Publications.

Greiman Leads Home Usability Workshop at APRIL Conference

Lillie GreimanLillie Greiman, a researcher at the RTC: Rural at the Rural Institute for Inclusive Communities, led the workshop, “Home Usability to Support Community Living: Results and Next Steps from the PICL Project,” at the 2021 APRIL Virtual Conference, October 18. Her presentation included success stories about the impact of home usability on consumers’ lives and an exploration of how Centers for Independent Living can start their own home usability programs. The PICL Project is a collaborative research effort of the RTC: Rural, RTC/IL, and multiple Centers for Independent Living (CILs) across the US. The Home Usability Program works with consumers and CILs to garner personal and community resources to make home modifications that will support consumers’ goals.  

Koon Presents at American Public Health Association (APHA) Annual Meeting and Expo

lyndsie koonDr. Lyndsie Koon, Associate Director of RTC/IL, presented “High-intensity functional training: Effects on functional independence and psychological well-being among adults with disability” at the Annual Meeting of the APHA, October 26.  Dr. Koon’s presentation provided an overview of her research into the effectiveness of High Intensity Functional Training (HIFT) in promoting independence, social connectedness, and health-related quality of life. She also discussed next steps for the research, such as identification of adaptive and inclusive strategies for HIFT, intervention design, and program development.

Presentations

Jean Hall and Noelle Kurth Presented for the NARRTC Webinar Series, “Telling Stories to Inform Disability Policy” on May 25.

Lillie Greiman presented “Home Usability Program (HUP): Effects of a Consumer-Driven Home Modification Intervention on Community Participation for People with Mobility Disabilities” at the Research and Training Center on Promoting Interventions for Community Living’s (RTC/PICL) State-of-the-Science Conference, September 8.

Jean Hall presented “Factors Influencing Community Participation for People with Mobility Disabilities” at RTC/PICL’s State-of-the-Science Conference, September 8.

Lillie Greiman presented “A Usable Home: A Qualitative Investigation of the Relationship Between Home Usability and Community Participation for People with Disabilities” at RTC/PICL’s State-of-the-Science Conference, September 15.

Lyndsie Koon presented “Examining the Effects of the COVID-19 Pandemic on Community Engagement for People with Mobility Disability” at RTC/PICL’s State-of-the-Science Conference, September 15.

Jean Hall and Kelsey Goddard presented “Health Disparities among People with Disabilities: Looking Beneath the Surface” to the Community Care Network of Kansas Virtual Conference, September 22.

Noelle Kurth presented "Social Isolation and Loneliness Among People with Disabilities: Findings from the National Survey on Health and Disability" at the Kansas Public Health Association Conference on "Strengthening Social Connectedness,” September 21.  

Kelsey Goddard and Keshia Walker presented “Promoting Interventions for Community Living (PICL)” at RTC/PICL’s State-of-the-Science Conference, September 22.

Kelsey Goddard presented “Self-Advocacy in Health Care” at the Special Olympics Kansas Leadership and Health Conference on October 17.

Lillie Greiman, of RTC: Rural at the Rural Institute for Inclusive Communities, led the workshop, “Home Usability to Support Community Living: Results and Next Steps from the PICL Project,” at the 2021 APRIL Virtual Conference, October 18.

Lyndsie Koon presented “Exploring exercise challenges and response strategies among adults with long-term vision disabilities” at the 2021 American Public Health Association Annual Meeting and Expo, October 26.

Lyndsie Koon, Ph.D., presented “High-intensity functional training: Effects on functional independence and psychological well-being among adults with disability” at the 2021 American Public Health Association Annual Meeting and Expo, October 26.

Isaac Nzuki presented “Examining the Impacts of the Coronavirus Pandemic and Social Distancing on the Health of People with Mobility Disabilities” at the 2021 American Public Health Association Annual Meeting and Expo, October 22.

Jean Hall was a panelist for “Long Covid in Employment: Access, Rights, and Experiences,” presented by Disability Rights Iowa, on October 25.

Publications

Jean Hall will serve as one of three guest editors for RTC: Rural’s presentation of a special issue of Frontiers in Rehabilitation Services. The special issue will feature research on Rural Disability and Community Participation. 

State-of-the-Science Conference Papers/Special Issue of Disability and Health Journal

Greiman, L., Koon, L., Schulz, J. A., & Nary, D. (2021). A usable home: A qualitative investigation of the relationship between home usability and community participation for people with disabilities. Disability and Health Journal, 101211.

Greiman, L., Ravesloot, C., Goddard, K.S., & Ward, B. (2021). Effects of a consumer driven home modification intervention on community participation for people with mobility disabilities. Disability and Health Journal, 101210.  

Ipsen, C., & Hall, J.P. (2021). Dimensions of community participation. Disability and Health Journal, 101208.

Hall, J.P., Kurth, N.K., Goddard, S. (2021). Assessing factors associated with social connectedness with mobility disabilities. Disability and Health Journal, 101206.

Koon, L.M., Greiman, L., Schulz, J.A., Goddard, K.S., Nzuki, I.M., & Hall, J.P. (2021). Examining the effects of the COVID-19 pandemic on community engagement for people with mobility disabilities. Disability and Health Journal, 101212.

Remillard, E. T., Campbell, M. L., Koon, L. M., & Rogers, W. A. (2021). Transportation challenges for persons aging with mobility disability: Qualitative insights and policy implications. Disability and Health Journal, 101209.

Additional Publications

Hughes, P.M., Wu, B.S., Annis, E.I., Brunelli, B.A., Kurth, N.K., Hall, J.P., & Thomas, K.C. (in press). Association of inadequate provider networks with unmet need for health services and self-employment among people with disabilities.

McCormick S.T., Kurth N.K., Chambless C.E., Ipsen C, & Hall, J.P. (2021). Case Management Strategies to Promote Employment for Transition-Age Youth With Disabilities. Career Development and Transition for Exceptional Individuals.

Ravesloot, C., Myers, A., Greiman, L., Ward, B., Goddard, K.S. & Hall, J.P. (2021). Is the presence of home entrance steps associated with community participation of people with mobility impairments? Disability and Health Journal, 101183.

Schulz, J. A., Ramaswamy, M., Collie-Akers, V., Jordan, S., Koon, L. M., & Tryanski, R. (2021). Understanding the Impact of an Integrated Crisis Team: A Qualitative Study of Emergency Department Staff. Community Mental Health Journal, 1-10.

Streed, C.G., Hall, J.P., Boyd, B.A., Batza, K., & Kurth, N.K. (in press). Characteristics of sexual and gender minority respondents of the 2019-2020 National Survey on Health and Disabilities. LGBT Health.