Raising Kellan

Today I chat with Torben Jensen. He is the Ministry Relations Manager for Joni and Friends in Nashville, TN. His job focuses on helping churches of all shapes and sizes become better at including and serving families affected by disability. Timeline of our conversation:01:30 Torben's origin story02:40 Joni & Friends and its beginnings. The Story of Joni Eareckson Tada.05: 00 Programs and the Outreach Ministry10:00 Physical vs Emotional or Relational Barriers for families experiencing disabilities and the Church16:15 Summer Camps at Joni & Friends22: 00 Words of encouragement and ConclusionYou can contact Torben at torben.jensen@joniandfriends.org

Jessica Ronne is an author, speaker, podcast host at Coffee with Caregivers, associate producer of the documentary "Unseen", and caregiver advocate.  She is the founder and executive director of⁠ The Lucas Project⁠, a non-profit dedicated to providing recognition, resources, and respite support for special needs families. She and her husband, Ryan live in Michigan with their 8 children, including their son Lucas, who has profound disabilities. Her story of beauty from ashes has been shared on The Today Show, Daily Mail, and Huffington Post, and is detailed in her memoir Sunlight Burning at Midnight.  To follow the ongoing saga, she can be found at ⁠www.jessplusthemess.com ⁠or purchase her latest books, Blended with Grit & Grace, Lovin’ with Grit & Grace, and Caregiving with Grit & Grace. Timeline 3:00 Introduction to Jess Ronne4:36 How to ask for help as a parent and the value of consistent respite to fill your cup as a caregiver.6:21 Where is the Village?7:05 The Lucac Project9:00 Coffee with Caregivers - Marsh's highlight, Episode 62 with Alice Foran.10:00 The Intersection of Faith and Grief.12:24 The documentary Unseen and the upcoming documentary Uncertain.14: Jess's words of encouragement.

In Episode 143, Megan Schwalm chats to us about the Tennessee Caregiver Coalition and how this nonprofit provides support to over 1 million caregivers in Tennessee. Timeline of our conversation:00:00 Introduction01:36 How did Megan come into her role as President and CEO at Tennessee Caregiver Coalition?04:42 Definition of Respite.07:00 Programs offered by TCC include the respite voucher program, a consumer-directed reimbursement for services delivered for respite care. TCC offers opportunities for caregivers to get together, including virtual and in-person events. 10:00 Policy Changes and how this impacts Medicaid and the Administration of Community Living (ACL through the Lifespan Respite Program, which funds the work done by TCC).14:00 How can we advocate?16:00 Conclusion

In this conversation, I chat with Kristie Kirby, whom I met at Partners in Policy-Making, a leadership program held by the Tennessee Council on Developmental Disability. This is a free 8 month advocacy training program.Timeline of conversation1:00 Introduction2:00 Kristie is a teacher's assistant.2:12 What is SACC?4:00 How does the SACC program work?5:15 Recruiting Volunteers6:00 Upcoming Resource Fair7:00 Exhibitors12:00 The Resource Fair will be at the Vine Branch Church, 2262 Bowser Rd, Cookeville, on June 14 from 10 am to 2 pmYou can reach Kristie Kirby at sacccookeville@gmail.com

In today's episode, we chat with Leo Cuello, J.D., a Research Professor at the Center for Children and Families in the McCourt School of Public Policy at Georgetown University. Leo helps us understand what Medicaid is and the roles it performs as the U.S. largest health coverage program.Timeline of the conversation:2:00 What is Medicaid and how does it impact the disability community? What services does Medicaid cover?7:00 Medicaid pays 60% of the long-term care, covering nursing homes and 70% of the home and community-based services.10:00 Medicaid is known by different names in different States, and eligibility criteria for each program may vary. For example in Tennessee, Medicaid is known as Tenncare.20:00 Home and Community-based waivers or exemptions25:23 Funding and how does money flow from the Federal to the State level (federal matching dollars per State . According to HUD Exchange, Tennessee receives $1.86 for each healthcare dollar it spends).36:00 What is Medicaid Expansion? (States not currently enrolled in this program include: AL, FL, GA, KS, MS, SC, TN, TX, WI, WY)37:00 Implications of Medicaid Cuts for Rural Communities?41:00 Misinformation that Medicaid Cuts will not affect individuals with disabilities44:00 What is Fraud, Waste, and Abuse as it relates to healthcare?51:00 What does Medicaid cuts mean for healthcare providers? How do States adjust for Medicaid cuts? 1) Change eligibility criteria2) Change program coverage3)Cut provider rates56:00 Call to Action. Contact your Congress Representative and Senator to tell them what Medicaid means to your family. You can find representatives at the following links: https://www.house.gov/ or https://www.senate.gov/. If you are comfortable with making a call, contact your representative at the US Capitol Building (202) 224- 3121 and respectfully speak or leave a message advocating for #NoCutsToMedicaid.Names of Medicaid per State Arkansas Health CareCaliforniaMedi-CalColoradoHealth First ColoradoConnecticut Husky HealthDelawareDelaware MedicaidFlorida Program of All-Inclusive Care for the Elderly (PACE)GeorgiaGeorgia MedicaidIllinoisIllinois MedicaidIowaIowa MedicaidKentuckyKentucky MedicaidMaineMaineCareMarylandMaryland MedicaidMassachusettsMassHealthMichiganMichigan MedicaidMinnesotaMinnesota Family CareMontanaMontana MedicaidNebraskaNebraska MedicaidNevadaNevada MedicaidNew HampshireNH MedicaidNew JerseyNew Jersey Medicaid New Mexico New Mexico MedicaidNew York New York MedicaidNorth Carolina MedicaidNorth Dakota North Dakota Medicaid

Jessica Awsumb and Hilary Travers are co-leads at Transition TennesseeTimeline: 2:15 Introduction3:15 Hilary's work at Perkins School of the Blind and what led her to Vanderbilt and transitional planning5:00 Jessica's pathway to transitional training and employment for students with IDD.8:13 How do we prepare for transitions (legal and evidence-based practice), which starts at Age 14 in TN. Key points mentioned: - 4 future goals in transitional planning are: post-secondary education, employment, community involvement, and community living. - A Course of Study (9th to 12th grade) is a selection of classes that are needed and individualized to a student to reach their post-secondary goals.- Annual goal to build competency for life skills.- Transition Services- a coordinated set of outcome-based activities to supplement after-school goals ( assigned to parent or third-party provider). 18:00 Job Exploration- What would you like to do for work? Your areas of interest? Explore the skills needed for the job in the community.21:14 Thinking about employment as a family.23:09 Support of job coaching vs natural supports- team-based approach.28:24 Job experiences and work-based learning: rural vs urban. What are students' skills? What is their motivation? What are their supports? It will influence their experience. Another consideration is full vs part-time, self-employed.32:27 VR for formal supports, faith communities are informal supports (these are non-paid opportunities), the Chamber of Commerce, who know the local businesses, and career fairs. 35:00 CTE courses are based on local community needs assessment, and if they align with students' interests, this is a great way for students to gain job skills. 37: 00 Helpful Resources: https://transitiontn.org/ Empowering Youth with Vision Impairments - free resources

I am excited to introduce you to Abby McCage, who will be one of our presenters at the upcoming Resource Ability Employment Expo to be held on May 7 at the Lannom Center in Dyersburg, TN, from 9- noon. Hello, my name is Abby McCage, and I am a young woman with a disability who is passionate about advocating for accessibility, inclusion, and equal opportunities. My personal experiences with disability have shaped my understanding of the world and fueled my desire to create change. I believe that everyone should have the chance to participate fully in society, regardless of ability. Through advocacy, I strive to raise awareness, challenge stereotypes, and empower others with disabilities to find their voices. My goal is to inspire and remind people that disability is just one part of who we are — it doesn’t define us, and it certainly doesn’t limit our potential.

In this episode, I chat with Emily Moscoe about Catalyst Sports. Timeline:1:30 Introduction to Emily Moscoe and her involvement with Catalyst Sports3:34 Gol Ball5:00 Catalyst Sports origin story8:40 What does adaptive hiking/camping look likeFreedom Chair12:00 Overview of Catalyst Sports Programs14: 00 Great Smoky Mountains Bike Program14: 50 Contact Information and Conclusion

Marsh Naidoo welcomes self-advocate Peach Chinratanalab and Milton Neuenschwande from the Department of Disability and Aging for an engaging discussion on the transformative power of technology in the lives of individuals with disabilities. Peach, a dedicated co-trainer at My Tech for All, shares her experiences and insights on enabling technology to enhance independence and improve daily living skills. From smart microwaves that respond to voice commands to air tags, Peach highlights the importance of accessible tech solutions.Milton explains the role of the DDA in promoting enabling technology and the exciting developments in the field. Listeners will learn about various tools available for individuals of all ages, including smartwatches that assist with daily routines and innovative applications that foster social interaction and skill development.00:00 Introduction02:42 Milton is the State Director of Enabling Technology for DDA06:03 Peach is a co-trainer at My Tech for All.07:57 Milton: Peach has a smart microwave that works with Alexa and Google13:55 Technology is always evolving, right? 16:10 The Department of Disability and Aging has a website for enabling technology19:07 Smart Home Models in Tennessee.Don't miss the upcoming Resource Ability Employment Expo on May 7th in Dyersburg, Tennessee, where you can discover more resources for individuals with disabilities!

In Episode 136 of Raising Kellan, Marsh Naidoo sits down with Lindsey Lind from East Tennessee to discuss their shared experiences in the Partners in PolicyMaking program, a leadership initiative by the Tennessee Council on Developmental Disabilities. Lindsey, a dedicated mother of three, shares her journey navigating the complexities of disability advocacy, particularly focusing on her son who has an extra male chromosome, autism, and ADHD. This episode dives deep into the importance of understanding Section 504 of the 1973 Rehabilitation Act, which protects individuals with disabilities from discrimination in various settings including education and healthcare.Listeners will learn about Axys, a nonprofit organization supporting families affected by sex chromosome variations, and the implications of the Texas vs Becerra lawsuit that threatens to undermine these critical protections for persons with disabilities. Lindsey emphasizes the need for parents to be informed and proactive in advocating for their children's rights within the educational system, including understanding the differences between IEPs and 504 plans.Join us for this enlightening conversation, which will highlight the urgency of advocacy in the face of proposed federal changes and the vital role of community support in ensuring that all children receive the accommodations they need to thrive. Don't miss the upcoming Disability Day on the Hill on March 12th, 2025, where you can make your voice heard!00:00 Introduction03:53 Lindsey Lind origin story09:53 What is keeping Lindsey up at night?18:23 Lindsey: Advocating for school accommodations for kids with disabilities is crucial21:12 Upcoming events