Innovative Collaborations to Meet the Needs of Individuals with Disabilities in Rural Communities

1. Innovative Collaborations to Meet the Needs of Individuals with Disabilities in Rural Communities Patrick Kitzman PhD, MSPT Division of Physical Therapy and Rehabilitation Sciences Program College of Health Sciences University Of Kentucky

2. Overview of the talk • Brief discussion of the issues that led to our creation. • Brief Discussion of Community-Based Participatory Networks. • Brief discussion about who forms the KARRN. • Brief discussion about what KARRN is involved with.

3. The Problems • Individuals who live in rural communities, especially those with neurological conditions (stroke, TBI, SCI) , have well documented health and healthcare disparities that affect their quality of life. • We have very high incidence of Stroke and TBI in Kentucky, especially eastern KY • Overall, how can we help improve health and healthcare, and help improve Quality of Life.

4. The Initial Study • Examined the supports and barriers to long-term healthcare for persons with SCI living in rural communities. • From the point of view of the client and caregiver as well as the healthcare providers. • Kitzman and Hunter. Journal of Rural and Community Development (2011). 6(1): 95-104

5. Barriers to Healthcare for People with SCI in Rural Communities Clients point of view: • Strong need for connection, both with other people with SCI and with service providers. • Limited resources, personally and systemically. Reduced access to care, transportation, resources to make house adaptation, buy and maintain appropriate equipment, etc.

6. Barriers to Healthcare for People with SCI in Rural Communities Healthcare providers point of view. • A need for increased specialized SCI knowledge among service providers in rural communities. • No common voice among people with SCI. There is a need for greater advocacy.

7. Supports (Assets) to Healthcare for SCI in Rural Communities • Small town “we care for our own” mentality. • Local community action groups. • Regional organizations that are “the best kept secrets in Kentucky”. • Lifestyle pace that can be conducive to healing. • Overall love of this region by the people living there. • So how do we decrease barriers and enhance supports in these populations?

9. Community Based Participatory Network • Respect and Common Courtesy! • Community stakeholders must be equal participants. (Challenge) • True partners • We do not have a community advisory board that meets 1-2 times a year. • We meet every month and all stakeholder groups are present at each of these meetings • Use Technology to include individuals at a distance

10. Community Based Participatory Network • Bidirectional flow of information. (Challenge) • The community must get something out of the partnership. • Have heard many times “we have been researched to death and have gotten nothing out of it” • Accountability with the community that you are working in. (Challenge) • Sustainable (long-term commitment) (Challenge)

11. Focus Areas of KARRN Education: • Development of educational materials library. • Ideas came from our community partners • Demonstrating wheelchair skills (basic to real world) • This started as a collaboration with AgrAbility. • Accessibility (Handicap versus Wheelchair) • Annual KARRN Conference • Issues related to SCI, Stroke, and TBI • Over 210 participants each year. • Educational Website-Falls Prevention

12. Focus Areas of KARRN Research examples: • Research 101: Everyone Can Do It program • Training modules designed for community members • Needs Assessment for Persons with Stroke (NAPS) Study. • Health Navigation for Reintegration of Stroke Patient in Rural Communities. • Use of Community Health Navigators (KY Home Place) • Use of “right time” education.

13. Focus Areas of KARRN Advocacy: • Hold meetings with local community action groups and local officials in our Appalachian counties. • Have had several opportunities to advocate for wheelchair accessibility. • There can be a big difference between handicap accessibility and wheelchair accessibility. • Development of the Kentucky Congress on Spinal Cord Injury

14. Focus Areas of KARRN Share Information: • Currently hold monthly meetings using the KY Telehealth network and interactive television (ITV) to connect with multiple sites in central and eastern Kentucky. • With a few days warning can add additional sites as needed. • Development of a central database of available community resources for each county in Eastern KY. • KARRN Newsletter

15. Focus Areas of KARRN Increase the Quality of Life. • Project CARAT (Coordinating and Assisting the Reuse of Assistive Technology). • Funded through HRSA. • Sponsor community members to participant in meetings/events such as the No Barriers Summit and now Global explorers • Help connect persons with needs with community based partners.**

16. Focus Areas of KARRN Sustainability • Continue to develop links to local, state and national resources. • Have always built at the most basic level and partnerships so that we should not be dependent on grant funding to survive. • We existed before we received NIH funding and plan to be here when it runs out.

18. Funding for KARRN related projects has come from: • EPSCoR (National Science Foundation) • The Vice Present for Research, University of Kentucky • Paralyzed Veterans of America • The Christopher and Dana Reeve Foundation • NIH-National Center on Minority Health and Health Disparities (PI’s Kitzman, Harrison, Costich, 1RC4MD005760-01) • USDA AgrAbility grant • University of Kentucky Center for Clinical and Translational Sciences pilot grant

19. For more information on KARRN go to: www.karrn.org Patrick Kitzman - Director phkitz1@email.uky.edu 859-218-0580