Kindness Warrior Podcast

Episode 19 When Your Child Has Multiple Diagnoses: with DSL mom Polly Boehnlein

DSL member Emily Lane and Carly sat down to talk to Polly Boehnlein, who has a child with multiple diagnoses in addition to Down syndrome. We learn how their family celebrates little victories, finding friends, and how to cope with the unknowns of life. 

Episode 18- Preventing Exploitation: The Hard Truth with guests Loren Pilcher and James J. Wilkerson

Trauma Warning: in this episode we speak about sexual assault and abuse in the disability community. 

We had guests James (Joey) Wilkerson and Loren Pilcher on with us to discuss abuse and sexual assault in the intellectual and developmental disability community and the importance of education and prevention.

James Wilkerson is Chief Diversity Officer/Title IX Coordinator at Indiana University Southeast, he is also an author and sexual assault advocate. His organization Greek Law has educated hundreds of college students about consent and bystander intervention.  We also had Loren Pilcher, who is the COO of Sweet Behavior Services. Loren is a passionate disability activist and researcher and has spent almost two decades working in the disability community and advocating for the disability community. 

Carly mentions in the episode that she hadn't been formally trained on the signs and symptoms of abuse. Since recording the episode, she along with the few team members that hadn't previously had this training at DSL have completed it. DSL strives to educate ourselves, our staff, and our members on this very important issue and are taking steps each day to be better.  We encourage our listeners to insist that all staff working with individuals with disabilities in every setting are trained on this topic.

We will continue this series and speak on the importance of consent and sex education for members of the intellectual disability community for the purpose of preventing exploitation and abuse. 

If you have any questions or concerns, or would like to take action, don't hesitate to reach out: KindnessWarriorPod@dsoflou.org 

Sources:

Sobsey, D., D. Wells, R. Lucardie, and S. Mansell. 1995. Violence and Disability: An Annotated Bibliography. Baltimore, MD. Brookes Publishing.

 

People with Disabilities Affected by Violence: Court Advocacy and Intervention Tips. I-CAN Accessibility Project, Virginia Commonwealth University School of Social Work & Partnership for People with Disabilities, Jackie Robinson, 2012. 

 

Risk and Prevention of Maltreatment of Children with Disabilities, http://www.childwelfare.gov

 

Smith, N. and Harrell, S. March 2013. Sexual Abuse of Children with Disabilities: A National Snapshot. Center on Victimization and Safety, Vera Institute of Justice.

 

Harrell, Ericka. Crime Against Persons with Disabilities, 2009-2011 – Statistical Tables, U.S. Department of Justice, Bureau of Justice Statistics, Harrell, Ericka.

 

Powers, Laurie E. and Oschwald, Mary. 2004. “Violence and Abuse Against People with Disabilities: Experiences, Barriers and Prevention Strategies.” Center on Self-Determination, Oregon Institute on Disability and Development, Oregon Health & Science University.

 

"Abuse of People with Disabilities: Victims and Their Families Speak Out"; A Report on the 2012 National Survey on Abuse of People with Disabilities; Spectrum Institute, The Disability and Abuse Project.

Episode 17- Covid-19 Vaccine: What You Need To Know

This episode is a recording of a Covid-19 Vaccine education webinar hosted by Special Olympics Kentucky on February 3, 2021. They had friend of the podcast Dr. Priya Chandan and Dr. Corrie Harris from Norton Children’s hospital. In this session these Louisville doctors talk all things vaccine. Self advocates from SOKY and DSL and parents submitted questions beforehand and they were able to answer most all of the questions posed. This will most likely be a regular webinar with updates as the medical and public health experts learn more. 

To watch the Zoom webinar with the slideshow, click here

Topics Covered:

• Who is most at risk for getting sick from COVID? 
• What is a vaccine? 
• Why do people get vaccines? 
• Myths vs. Facts
• How does the COVID vaccine work (including possible side effects) 
• Where can I find information and updates about when I can get a COVID  vaccine?

Meet the Presenters:

Dr. Priya Chandan, MD, PhD, MPH 

• Assistant Professor, UofL SOM Division of Physical Medicine & Rehabilitation; UofL Health Physicians Restorative Neuroscience 
• Global Clinical Adviser, Special Olympics MedFest 
• Project Director, National Curriculum Initiative in Developmental Medicine Commonwealth Scholar, Commonwealth Institute of Kentucky 
• Special Olympics Kentucky Board Member 

Dr. Corrie Harris, MD, MSc 

• Associate Professor of Pediatrics, Division of Pediatric Hospital Medicine; University of Louisville School of Medicine 
• Associate Medical Director, The Home of the Innocents Pediatric Convalescent Center
• Special Olympics Kentucky Board Member

Episode 16-Aging and Down Syndrome: Positive Approach to Care Part 2

This is part two of our aging and down syndrome conversation. If you haven’t had a chance to check out part one, we suggest you go back to episode 15 and give it a listen. In this conversation Carly digs a little deeper with DSL aging expert Cathy Palmer about what they discussed is episode 15. 

Resources:

Watch the full PAC webinar

What is PAC?

University of Kentucky Sanders-Brown Center on Aging

Alzheimer's Disease and Down Syndrome

DSC2U

If you would like to submit ideas, feedback or sponsor the pod, email us at: kindnesswarriorpod@dsoflou.org

To learn more about Down Syndrome of Louisville or to donate, visit Downsyndromeoflouisville.org

Episode 15- Aging and Down Syndrome: Positive Approach To Care

Carly sat down with DSL’s resident aging guru Cathy Palmer to chat before an education session, Aging and Down Syndrome: Positive Approach To Care.  We invited aging experts Teepa Snow and Beth Tesfay from the organization Positive Approach to Care (PAC.) PAC is a  program that guides others in effectively working with people living with neurocognitive degeneration.  

Resources: Watch the full PAC webinar

What is PAC?

University of Kentucky Sanders-Brown Center on Aging

Alzheimer's Disease and Down Syndrome

If you would like to submit ideas, feedback or sponsor the pod, email us at: kindnesswarriorpod@dsoflou.org

To learn more about Down Syndrome of Louisville or to donate, visit Downsyndromeoflouisville.org

 

Episode 14- Developing Responsibility with the Career Solutions Team

This is a special episode, a recording of a virtual parent education session hosted by Down syndrome of Louisville. Led by Zac Sappenfield and Brianna Heitzman, two of our Career Solutions Specialists. In this session they break down how important it is to utilize chores in your household to ensure future success in the workplace. They also have special guests Austin and Margarita Edelen who discuss Austin’s great work ethic and how it stemmed from helping his family on their farm. 

Check out the zoom video and the PowerPoint presentation here

If you would like to submit ideas, feedback or sponsor the pod, email us at: kindnesswarriorpod@dsoflou.org

To learn more about Down Syndrome of Louisville or to donate, visit Downsyndromeoflouisville.org

 

 

Episode 13- Career Solutions with Zac Sappenfield

Carly sat down with Career Solutions Specialist Zac Sappenfield to learn all about Down Syndrome of Louisville's Career Solutions Program. Our members join Career Solutions as they begin their transition from high school and our team aids in job training, finding them individualized jobs, supporting them on the job, and how hiring individuals with disabilities is an asset to any workplace. 

 

If you would like to submit ideas, feedback or sponsor the pod, email us at: kindnesswarriorpod@dsoflou.org

To learn more about Down Syndrome of Louisville or to donate, visit Downsyndromeoflouisville.org

 

 

Episode 12- The Fortwengler Family

Down Syndrome of Louisville member Lucas Fortwengler joins Carly in the episode to interview his dad and sister, Steve and Kaitlin. Lucas has accomplished a lot in his life... he has a great job at Cabela's, he is an Eagle Scout, a gym rat, and most recently he earned a prestigious gold medal from congress. Carly and Lucas ask Kait and Steve why they think he is so good at 'crushing his goals', and what they would say to the doctors that told his parents he wouldn't amount to much today. 

This episode is dedicated in loving memory to Janna Fortwengler. 

If you would like to submit ideas, feedback or sponsor the pod, email us at: kindnesswarriorpod@dsoflou.org

To learn more about Down Syndrome of Louisville or to donate, visit Downsyndromeoflouisville.org

 

 

Episode 11- Dr. Priya Chandan: Part 2

Carly and co-host Ankur talk to Dr. Chandan in depth about her medical advocacy and Covid-19 in the Down syndrome community. 

If you have questions for Dr. Chandan or would like to submit ideas, feedback or sponsor the pod, email us at: kindnesswarriorpod@dsoflou.org

To learn more about Down Syndrome of Louisville or to donate, visit Downsyndromeoflouisville.org

 

Episode 10- Dr. Priya Chandan: Part 1

Carly sat down with Dr. Priya Chandan and co-host Mr. Ankur Chandan. We sit down with Dr. Chandan (who happens to be Ankur's sister) to talk about family, her work in medical advocacy, and Covid-19.

Dr. Chandan is a huge advocate for the disability community, her impressive medical career has centered around important medical advocacy. You can find her at University of Louisville School of medicine in the Department of Neurosurgery, Division of Physical Medicine and Rehabilitation. Her list of accomplishments is vast- but most notably she serves as Project Director for the National Curriculum Initiative in Developmental Medicine (NCIDM) The goal of this project is to provide training to medical students in the field of developmental medicine - the care of individuals with intellectual/developmental disabilities (IDD) across the lifespan. 

If you have questions or would like to submit ideas, feedback or sponsor the pod, email us at: kindnesswarriorpod@dsoflou.org

To learn more about Down Syndrome of Louisville or to donate, visit Downsyndromeoflouisville.org