Improving quality of life for all
Registration Deadline Approaching for 2018 KARRN Conference
Register by August 10th for the 9th annual conference. This year’s focus is “Health and Wellness for Individuals with Disabilities.” The full agenda and speaker bios are available in our Conference Program. Please plan to join us on Friday, August 24, 2018 from 8:00 a.m. – 4:00 p.m. Registration is free, lunch is included and 5.0 Physical Therapy CEUs have been approved. If you have any questions, contact Julie Brock.
Our conference is unique, in that it combines an audience of students (future healthcare providers), current healthcare providers, and individuals with neurological conditions and their caregivers.
Registration Open for KCSCI
You also won’t want to miss the annual Kentucky Congress on Spinal Cord Injury on Friday, September 21! Note the new location (Northeast Christian Church 990 Star Shoot Parkway, Lexington Ky. ) – convenient to interstates, for out-of-towners. Registration link:
Conference attendees can expect complimentary breakfast and lunch during the event, as well as refreshments throughout the day. There will be a vendor area for you to view new products, technologies, services, and demonstrations before, during, and after event speakers and breakouts. Attendees will also be given the opportunity to meet new people and engage in the discussion that is critical to the SCI world and the disability community as a whole.
All of this and more is completely free to you as an attendee. We hope that this gift is as meaningful to you as it has been to those of us who have benefited from the work and support of the Kentucky Congress on Spinal Cord Injury.
KCSCI strives to create a culture where consumers become strong advocates for the rights of all people with disabilities and are willing agents who provide peer mentoring to the SCI community.
New HDI Grant
Published: July 13, 2018
HDI has received a three-year grant totaling $600,000 from the Administration on Community Living. The project, Wellness Edge, is a Paralysis Resource Center State Pilot program grant. It will build connection within local communities to enhance and facilitate access to recreational programs to better serve people with paralysis and their support networks.
This fall, Wellness Edge will provide grants of up to $25,000 to community organizations that provide organized activities that are intentionally designed to benefit individuals, groups or communities. Chithra Adams, who will lead the project at HDI, said, “I am really excited to launch this effort for Kentucky. It will provide opportunities to develop new community partnerships and stimulate innovative ways to better serve people with paralysis and their networks of support.”
Assisting Adams in the project are Jason Jones, founding member of the Kentucky Congress on Spinal Cord Injury, and Lindsey Mullis, HDI’s health and wellness director. This team will provide technical assistance and collect data that will ultimately help improve health outcomes for people with paralysis and build stronger, more inclusive communities.
Community grant applications will be available on the HDI website (www.hdi.uky.edu) in August.
An estimated 5.4 million people live with paralysis in the United States. The leading causes of paralysis are stroke, spinal cord injury, and multiple sclerosis. People impacted by paralysis are more likely to have health risk factors, such as being overweight, smoking and not being active; which put them at greater risk of developing secondary conditions such as cardiovascular disease and diabetes.
Berea support group June 25
The ABLE (Achieve and Build Lifetime Empowerment) group meets on Monday, June 25 at 11:15 in the Fellowship Hall at Berea Baptist Church (310 Chestnut Street). Parking is convenient and the building is handicapped accessible.
This month will feature Nick Wallace as a guest speaker, and he will present Financial Planning for Special Needs.
The support group is free, volunteer, confidential and lowkey. It is for those with visible and invisible disabilities. Caregivers are welcome. All are encouraged to bring paper and pen and a snack and drink for yourself.
KARRN Conference agenda coming soon
Our speakers are putting finishing touches on the August 24 conference agenda. We are excited about our “Health & Wellness” theme – the day will be full of information, activities and resources around this topic. In the meatime, our Save the Date flyer is available.
May is Stroke Awareness Month
Keisha Hudson and her community partners in KC3T (Kentucky Care Coordination for Community Transitions) had a busy month of activities! They staffed informational tables in many locations, and the photos below show some of their other activities. Great work in bringing more awareness to the community!
Perry County Judge Executive and Hazard’s Mayor signing the proclamations declaring May Stroke Awareness Month.
Ramp Up Kentucky! Report
There have been 35 temporary ramps distributed. There were 3 ramp kits distributed. There were 27 follow-up telephone surveys completed. Attempts were made to contact all thirty-five (35) consumers that received temporary ramps and the 3 ramp kit consumers. The overall response rate for the telephone survey was seventy-five (75) percent.
- “Amazing, having portable ramp changed my life. I’m now able to take my daughter and her wheelchair out of the house easily for a walk to the park or a drive. We also use the portable ramp to get her wheelchair into the van. Before this, my other children had to stay home unless their dad was home to help lift their sister’s wheelchair. We have left the house every day since we have had the portable ramp.”
- “Very grateful for this program.”
- “Continue please, there are many more people who need this!”
- “Very blessed to have this program.”
- “It’s a good program, has helped me out a lot.”
- “Very grateful, I was able to try it out before buying a portable ramp. The portable ramp didn’t work for our house.”
- “As a case manager on the spinal cord unit at Cardinal Hill, I often have patients that have suffered a spinal cord injury and need resources fast; especially ramps. Ramp UP was easy and helpful. It helped get a person home from the hospital and removed a barrier for a patient trying to adjust to their new normal.”
- By the Numbers:
Number of ‘hits’ on website and other social networking sites: 2,712
Applications for ramp loans received: 35
Ramps distributed through long-term loan: 35
Applications for ramp building kits received: 4
Ramp building kits distributed: 3
% who report the application process was easy: 100%
% receiving ramps and ramp building kits receiving government assistance: 94%
% receiving ramps and ramp building kits who self-report earlier transition from a facility or the ability to remain at home: 44%
% receiving ramps and ramp building kits who self-report increase in independence: 44%
% satisfied with the project: 100%
- Cardinal Hill Rehabilitation Hospital: “I wanted to thank everyone involved with the Ramp UP program. It truly is a great service and helped my patient out during their time of great need. As a case manager on the spinal cord unit at Cardinal Hill, I often have patients that have suffered a spinal cord injury and need resources fast; especially ramps. Ramp UP was easy and helpful. It helped get a person home from the hospital and removed a barrier for a patient trying to adjust to their new normal. Thank you for all your help! Karah was great too at the Lexington location.”
- Let’s Go to the Park: “Amazing, having portable ramp changed my life. I’m now able to take my daughter and her wheelchair out of the house easily for a walk to the park or a drive. We also use the portable ramp to get her wheelchair into the van. Before this, my other children had to stay home unless their dad was home to help lift their sister’s wheelchair. We have left the house every day since we have had the portable ramp.”
- Community Inclusion: Nina’s neighbors sought a way to enable their friend to continue visiting their homes. Neighbors frequently host neighborhood dinners and book club gatherings. Nina’s recent decreased mobility has prevented her from visiting other homes on the street due to ingress/egress issues using her wheelchair. While Nina’s home has a permanent ramp, this did not help with getting her into other homes on the street to visit. Due to the generosity of Ramp Up Kentucky! and it’s funding source, the Christopher and Dana Reeve Foundation, the neighbors were able to borrow a portable aluminum ramp to try out and provide access for Nina to get into the other homes in her neighborhood. With this try-before-you-buy opportunity, the neighbors have been able to identify a portable ramp suitable for use in their community, which they will then all be able to chip in to purchase a portable ramp to have permanently available for them to share throughout the neighborhood.”
6th Annual KY Congress on Spinal Cord Injury:
September 21, 2018
Save the date, and note the new location. Share the KCSCI flyer with all of the details!
KARRN 2018 Conference – Save the Date
Planning is in progress for our annual conference. Please plan to join us on Friday, August 24 at Perkins Conference Center in Richmond KY, and spread the word by sharing our Save the Date flyer.
Patient-Centered Research Data presented at American Physical Therapy Association
Pat Kitzman and Katy Sutton attended APTA’s annual Combined Sections Meeting and presented the poster entitled “The Road Back Home: Perceived Health and Healthcare Needs of People with Neurological Conditions Transitioning Back to Rural Communities” in New Orleans on February 22.
In this study, participants have given their time in interviews, work groups, half-day meetings and Zoom video conferencing. They have shared what their health information sources are and what their own health research priorities are. Participants are continuing with projects that address some of the research questions that they identified. The findings from this two-year project also will be presented at the annual conference of the American Occupational Therapy Association.
This poster won a blue ribbon from the Global Health Special Interest Group in the area of Social Responsibility. Only 2% of the meeting’s posters received this recognition.
New Support Group in Madison County
Carolyn Wallace shared with us some publicity surrounding the new ABLE support group in Berea, which met for the first time on February 26. The group is not condition-specific and is an opportunity to talk with others in non-medical terms. We look forward to hearing more as the group continues to develop.
Kentucky Stroke Registry Article Published
An in-press article in Journal of Stroke and Cerebrovascular Diseases documents the Kentucky Appalachian Stroke Registry. This registry was developed and has been utilized to determine healthcare needs. This article addresses how the registry’s aggregated data quantifies the relationship between stroke and diabetes.
Individual researchers can request data from the registry for their own projects, as well.
KARRN 2017 Conference – Recorded Sessions Available
- Did you attend our conference, and want to revisit some of what you heard?
- Were you unable to attend our conference, and want to see it archived?
- Did you love it, and want to share with colleagues?
All sessions can be accessed through our website’s Video Library in the lower left corner, or through the direct link: https://karrn.org/karrn-2017-conference-presentations/
Congrats to authors Sheppard-Jones, Hunter and Bower
KARRN members Kathy Sheppard-Jones, Beth Hunter and Walter Bower have a new chapter published entitled “Capacity Building in Rural Communities Through Community-Based Collaborative Partnerships.” It is included in the book Disability and Vocational Rehabilitation in Rural Settings, which is now available.
For more information, see: https://link.springer.com/chapter/10.1007/978-3-319-64786-9_36
Waiver Program Update
KARRN member Carolyn Wallace and her son Aaron recently attended a focus group in Frankfort to provide stakeholder experiences, with the goal of shaping the services the Kentucky Department of Medicaid Services provides. In this current phase, input about the importance and impact of the community-based 1915(c) waiver program (which includes Acquired Brain Injury Medicaid waivers) can be sent by email to MedicaidPublicComment@ky.gov or by phone to Lori Gresham at (502) 564-7540.
Thank you, Carolyn, for representing! If anyone has any success stories, improvements that occurred through the use of the waiver program, or other input, please email or phone.
KARRN Conference Recap & Supplemental Resources
The 8th annual Kentucky Appalachian Rural Rehabilitation Network conference on August 29 from 9:00-5:00 at Eastern Kentucky University was well attended. We brought together 199 students, providers, and individuals and caregivers affected by stroke, spinal cord injury and traumatic brain injury.
As promised, our speakers have provided supplemental resources. CLICK HERE to view them.
A very special thank you to our sponsors:
- Paralyzed Veterans of America Education Foundation (conference grant)
- University of Kentucky College of Health Sciences
- Eastern Kentucky University
- Spinal Cord & Brain Injury Research Center (SCoBIRC)
- Kentucky AgrAbility
- Advanced Medical Group LLC
Much appreciation also goes to our speakers who generously provided their time and expertise: Jennifer Hastings, Don Helme, Beth Hunter, Patrick Kitzman, Jane Kleinert and our panelists: Jason Jones, Tonya and Mark Kincaid, Sasha Rabchevsky, Sara Salles, DO, Carolyn and Aaron Wallace.
To review the conference agenda and speaker information, click here.