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Fund for Excellence Projects

Published: May 18, 2017

Fund for Excellence

The Human Development Institute (HDI) established the Fund for Excellence for the development of innovative programs, services or products to address the needs of individuals with developmental disabilities and their families, for which funding is not currently available. Fund for Excellence Projects are led by HDI staff.

Current Projects

Below are projects that are currently being funded by HDI.

The Impact of Robot-Assisted Gait Training and Multidisciplinary Rehabilitation for Children with Cerebral Palsy: Proof-of-Concept Study

Project Lead: Kathy Sheppard-Jones/Lumy Sawaki

Project End Date: June 2018

Anecdotal evidence from therapists and family indicates comprehensive benefit for children with CP. More specifically, robot-assisted gait training for children appears to enhance not only gait but also outcomes of speech and occupational therapy. The main objective of the proposal is to collect strong preliminary data enabling proof-of-concept as well as a foundation for submission of a NIDILRR grant.

Expanded Photo Library to Improve Representation of Diversity, Employment, and the Lifespan

Project Lead: Stephanie Meredith/Harold Kleinert

Project End Date: March 2018

Project Summary: The University of Kentucky Human Development Institute (HDI) is expanding its photo library and creating an important resource to improve the broad representation of people with disabilities from diverse backgrounds. The photos will be utilized by institute as well as the National Center for Prenatal and Postnatal Resources.

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Rural Clinic Assessment for Accessibility Project

Project Lead: Christina Espinosa Bard, Kathy Sheppard-Jones, and Pat Kitzman

Project End Date: October 2017

The purpose of this project is to collaboratively work with 1-2 smaller rural hospitals to assess accessibility of the facility, develop a collaborative plan to address any barriers, and support efforts to secure funding to address those barriers. This will be accomplished through the following strategies and activities: 1) determine current best practice in physical accessibility, 2) create and refine assessment tool for health care facilities, 3) conduct assessments with pilot sites, 4) develop solutions for enhancing accessibility, 5) show proof of concept, and 6) share project results.

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Using Propensity Score Matching to assess effectiveness of health navigators on outcomes for stroke patients

Project Lead: Tony LoBianco, Chithra Adams, and Pat Kitzman

Project End Date: June 2017

The purpose of the study is determine the impact of the KC3T interventions on healthcare utilization. The project will use existing databases and propensity score matching to create an artificial statistical control group. Individuals from the control group will be matched to the individuals in KC3T based on demographics, health risk factors (smoking, obesity), geographical factors (residing in food insecure region, lack of health care). Analysis will be conducted to see if the KC3T participants had a lower health care utilization rate than the control sample. This is an innovative method of looking at health outcomes without using randomized control trials.

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Completed Projects

Below are projects that have been funded and completed by HDI to improve outcomes.

Volunteer Advocacy Program Project

Project Lead: Meada Hall and Annette Jett

Project End Date: June 2017

The Volunteer Advocacy Program (VAP) was developed through Vanderbilt University Kennedy Center, one of Tennessee’s University Centers for Excellence on Developmental Disabilities (UCEDD). Adapted for Kentucky in partnership with the Human Development Institute (HDI) at UK, Kentucky’s University Center of Excellence on Developmental Disabilities, VAP is a 36-40 hour training designed to produce competent advocates who can help with Individualized Education Plans (IEP’s). Unique to Kentucky’s VAP, a dyad model focusing on self-determination and advocacy skills has been added to the curricula. This is designed to allow a family member or guardian to learn alongside a self-advocate for the portion of the course covering student-led, i.e. “self-advocate-directed,” IEPs. Build Inclusion’s partnership with HDI to bring VAP to Kentucky combines the expertise of industry and educational professionals with the firsthand experience of families associated with Build Inclusion – as staff, board members, volunteers and supporters – to ensure the highest quality replication for VAP.

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Understanding Language Environments in Community Settings in Families of Children with Autism Spectrum Disorder

Project Lead: Joanne Rojas

Project End Date: January 2017

Project Summary: The primary goal of this project was to assess language environments in community settings among families of children with ASD ages 3-6 years (n=10) using precise, objective measures: the Language ENvironmental Analysis (LENA) systemTM and a Global Positioning System (GPS) (i.e., QstarzTM).

Click here to view the final report.

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My Choice Kentucky: Exploring Supported Decision-Making in the Commonwealth

Project Lead: Laura Butler

Project End Date: October 2016

Project Summary: The primary goal of this project was to educate people in Kentucky about alternatives to legal guardianship, specifically, supported decision-making. The focus was primarily on adults with developmental/intellectual disabilities, their families, and service providers. Some outreach was also made to attorneys, judges, and public guardians. The goal at the end of every session or conversation was for people to understand that legal guardianship is not the only option for people who may need help making life decisions. Over time, the project also grew to include information about what guardianship is and isn’t (dispelling myths). This work was done in conjunction with Kentucky Protection and Advocacy.

Click here to view the final report.

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HDI National Center for Prenatal and Postnatal Resources Turner Syndrome Photography

Project Leaders: Stephanie Meredith/Harold Kleinert

Project End Date: September 2016

Project Summary: The purpose of this project was to complete the production of a booklet on Turner Syndrome for parents and prospective parents who receive a prenatal diagnosis of this condition. We received a grant (July 1, 2015 – June 30, 2016) from the Joseph P. Kennedy Jr. Foundation to create the text of this booklet in collaboration with our National Center Medical Advisory Committee.

The HDI Fund for Excellence provided supplemental funding to our Kennedy Foundation grant so that we could create the accompanying photography for the booklet. Studies have indicated that culturally diverse photography that portrays individuals with their families in the ordinary activities of daily life enables prospective families to see beyond a diagnosis, to what it might mean for someone in their own family living with that condition (Levis et al., 2012). Photography that captures individuals across the life span also enables prospective families to envision possible positive futures, at a time when the initial diagnosis often generates paralyzing fear, and a sense of profound isolation.

Click here to view the final report.

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Sibling Support: Building Capacity for a Kentucky Sibling Leadership Network Chapter

Project Lead: Carolyn B. Wheeler

Project End Date: December 2016

Project Summary: In order to “grow” a Kentucky Chapter of the Sibling Leadership Network as a strategy of sibling support, an investment in local efforts to find and invite siblings to not only join the KY SLN Network but also to provide meaningful opportunities for siblings to gather, share information and “figure out” what makes sense for them in their local communities is the focus of this project. This was accomplished through mini-grants to organizations throughout Kentucky which have a focus on family support to encourage their recruitment of adult siblings to the KY SLN Chapter, as well as provide assistance in supporting siblings in whatever role, current or future, they have in their brother or sister’s lives. In addition, funding was made available to two adult siblings to attend the Ohio SIBS Conference in Columbus, Ohio as a leadership development opportunity as well as to provide concrete direction for the development of a similar event as part of The Arc of Kentucky’s Conference. Supporting siblings and their involvement in their brother or sister’s life is a critical element of “changing practice – changing lives” which is at the core of HDI’s mission.

Click here to view the final report.

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Adaptation of Healthy Lifestyles Curriculum With Universal Design for Learning and Dyad Approach

Project Lead: Lindsey Mullis

Project End Date: June 2016

Project Summary: This project focused on modifying a health and wellness curriculum to use a more universal design that is accessible for people with disabilities and different learning styles — and enables them to make more informed choices about their health and wellness using the Dyad approach. Persons with a developmental disability chose a health partner with whom he or she would participate in self-selected health promotion activities. Participants chose the health component that was of most interest to them and worked toward positive changes in that specific area, such as exercise or nutrition. The lessons learned from the evaluation of this project will be used to create new resources that promote healthy lifestyles. Resources will be housed on the existing wellness4ky.org website to insure that they are available statewide.

Click here to view the final report.

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