Raising Kellan

Jeff Strand Coordinator of Government and External Affairs from the Tennessee Disability Coalition will discuss the Priority Bills for Part 2/2 of the 113th Tennessee General Assembly. Here is a link to what we discussed last year (2023) on Episode 78

TDC Priority Bills for 2024

1) TennCare for Working Adults, where persons with disabilities can potentially buy into TennCare services (like HCBS) by paying a premium. Eligibility to participate in this program will exclude present income and asset thresholds, making Tennessee the 47th State that could allow for this provision.

2) Paid Family Caregiving Resolution. As Jeff explains, this resolution would urge TennCare to work with community stakeholders to develop a comprehensive statewide paid family caregiving policy and program. If TennCare is unable to provide a solution in 2024, then TDC could write a Bill and bring this before lawmakers in 2025.

3) Right to Repair, Part 2. This Bill will require payors to pay for wheelchair maintenance and make provisions for "less complex" repairs, like flat tires, to be made by independent repair persons.

4) HB 2497/SB2146 will exempt two organizations from building dormitory-style, congregate living spaces within the State and bypass the State's anti-institutionalization laws, which prohibit the residence of more than four unrelated persons with disabilities in a group home or less than 500 yards from another group home.

Wins: The Tennessee Drivers Placard language was cleaned up to modernize the language of the law.

The transcript of our conversation will be available at www.raisingkellan.org

In this podcast episode, Leanne Pirece from Pre-Employment Transition Services (Pre-ETS) talks about this unique program through the Tennessee Department of Human Services. Pre-ETS is a program that helps students between the ages of 14 and 22 with disabilities prepare for life after high school. The program offers services such as career counseling, advocating for oneself, budgeting, and basic life skills. Leanne explains that Pre-ETS works closely with Vocational Rehabilitation (VR), which helps students find jobs or pursue further education after high school. She emphasizes the importance of parents understanding that the Individualized Education Program (IEP) does not follow the student to college or a job, and Pre-ETS and VR can help with the transition.

Timeline:

2:18 What is Pre -ETS?

4:17 How do Pre-ETS and Vocational Rehab work together?

6:50 Upcoming Resource Fair: March 28, 2024

10:30 How does a parent connect with Pre-ETS?

This episode is brought to you by Teletherapy Services LLC. Physical Therapy that gets you in motion.

In this episode of the Raising Kellan podcast host Marsh Naidoo interviews Jennifer Cunningham, Vice President of Client Services at the Star Center in Jackson, Tennessee. They discuss assistive technology services such as pencil grips, screen readers, and augmentative communication devices for those who cannot speak. The Star Center provides vision services, including orientation and mobility training, as well as communication devices for individuals with speech impairments. They also have a grant program for farmers with disabilities called Tennessee Ag Ability. The services statewide through partnerships with vocational rehabilitation programs and the Tennessee Technology Access Program.

Timeline: 

02:20 Jennifer Cunningham Introduction

03:46 What is assistive Technology

05:58 Services for the vision impaired

06:13 Orientation and Mobility expert

07:24 Magnifers and optical character recognition

09:14 Speech-to-Text or Voice-to-Text

10:59 Communication devices

13:25 Insurance

17:21 Statewide services offered by the Star Center

20:46 Tennessee Agribility

23:00 Conclusion

https://spotifyanchor-web.app.link/e/cSCIVxsOBHb

Host Marsh Naidoo interviews Dr. Jennifer Graves, the president of the Star Center in Jackson, Tennessee. Dr. Graves discusses her connection to disabilities and her passion for helping individuals with differing abilities. She explains how the Star Center was founded by Margaret and Chuck Doumitt who wanted to provide services for their children with Batten's Disease. The center offers a wide range of services, including music therapy, assistive technology, employment services, and a reading clinic for individuals with dyslexia. She encourages listeners to reach out to the Star Center for more information on their services.

Timeline:

00:33 Introduction

02:33 Dr Jennifer Grave's backstory

05:21. Dr Grave's career and how she became involved with the Star Center

06:53 The origin of The Star Center and the story of Margaret and Chuck T, Doumitt

11:48 Services provided for pediatric clients

12:10 Music Therapy

14:32 Vocational Rehab

16:03 Reading Programs

21:35 Homecare

23:33 Conclusion

Linked episodes: Part 2 Assistive Technology with Dr Jennifer Cunninham at The Star Center https://spotifyanchor-web.app.link/e/koMT7zTOBHb

The episode is sponsored by Anderson Consulting your one-stop IT shop!

6:31 Kim Decker and The Fellow of Christian Athletes (FCA)

7:46 Planned Equipment Drive for Kali's Mission Trip.

8:28 Items needed.

10:30 Our take on helping locally and internationally.

12:30 Kali relates Noah's story of mobility.

14:02 What is OneWorld Health?

15:12 Kali's plug to participate in the Equipment Drive.

17:36 Closing Remarks

This episode is sponsored by Dennis Anderson of Anderson Consulting in Newbern TN

3:27 What is vocational rehabilitation (VR)?

3:54 Who does VR service and what services does it cover?

4:16 How can parents get connected with VR?

5:47 Is VR part of school and when do you enroll for services?

11:58 Does VR involve finding independent living solutions?

14: 06 Can VR coincide with other employment services?

15:39 Conclusion.

The transcript of this podcast can be found at www.raisingkellan.org

This episode is sponsored by Anderson Consulting in Newbern, TN

1) Disability Day on the Hill on February 28, 2024, followed by Disability Advocacy Day on Monday, March 11, 2024, organized by the Tennessee Disability Coalition.

2) Podfest Media Expo from 25-28 August 2024 in Orlando, Florida.

3) Resource Ability Fair at Vocational Rehabilitation on Morgan Rd, Dyersburg TN on 28 March 2024 from 5-7 pm.

Happy New Year!

1) Magna-Tiles

2) Bubble Puzzles

3) Kinetic Sand

4) Weighted Stuff Animals

5) Sensory Swings

6) Bubble Lamp

7) Yoto Audio player

8) Osmo Kit for Tablet

9) Amazon Fire Tablet

10) Gabb Phone

DISCLAIMER: The suggestions on this list are general in nature and for individualized advice for your child's therapeutic toys an evaluation, assessment or conversation must happen with your physical therapist, occupational therapist, or speech therapist.

In this episode of the Raising Kellan podcast, host Marsh Naidoo interviews Jordan Collins, the Associate Director at Our Place Nashville, an organization that provides housing solutions for individuals with disabilities in the Nashville area.

Jordan shares his personal journey and how he became involved with Our Place. He explains that the organization aims to create inclusive communities where individuals with disabilities can live independently and thrive. They offer affordable housing options and rely on partnerships with other organizations to provide additional support services such as employment.

Jordan emphasizes the importance of community and discusses the concept of Ubuntu, which means "I am because we are." He encourages listeners to visit the Our Place Nashville website to learn more about the organization and get involved.

Check out episodes #77 and #85  on the podcast which also discusses housing solutions for our community.

2:25  Introduction of Jordan Collins from Our Place Nashville

4:15 Discussion on housing options for individuals with disabilities

5:54 Description of Our Place Nashville's mission and goals

7:48 Explanation of the Friendship House model

9:39 Overview of the onboarding process for joining the community

13: 00 Information on the locations of Our Place Nashville's properties

15:29 Emphasis on the importance of community and support

18:12 Explanation of the role of Our Place Nashville in providing housing and support

23:29 Mention of the concept of Ubuntu and its significance

28:38 Invitation to learn more about Our Place Nashville and contact the organization.

In this podcast episode, Naveh Eldar, host of The Landscape Podcast chats about his experience with Disability First Employment and the Project Search program. He highlights the importance of disability inclusion in the workplace and the progress that has been made in raising awareness and promoting employment opportunities for individuals with disabilities. Naveh encourages advocates to approach others with love and understanding, recognizing that everyone has something to learn.

October is National Disability Employment Awareness Month #NDEAM

Timeline: 

3:25 Introduction and Background Experience of Naveh Eldar

9:46 Association for People Supporting Employment First (APSE).

12:35 Project Search and how Naveh was part of the team that implemented a Project Search at their company. Please check out Season 1, Episode 1 and Season 2, Episode 17 on The Landscape Podcast to learn more about.

18:33 Bias and the importance of workplace disability training.

Challenges of finding employers and programs for persons with disabilities in rural areas.

26:15 Changing the narrative

30:35 Closing Remarks

In today's episode, I chat with co-leaders Ashley Parks and Ginna Rauls who tell us the backstory of Joy Life 901 and the Memphis Disability Network! We discuss the origin story and programs such as the Breakfast Club, fitness programs, and the Memphis Joy Prom. They emphasize the importance of community and connection for parents and individuals with disabilities centered on Christ.

Timeline:

2:49 Ashley Parks and Ginna Rauls talk about the origin story of Joy Life 901.

4:39 Ginna's introduction to the disability community.

5:31 Ashl

In today's episode of the Raising Kellan podcast, Marsh interviews Lori Green, the Executive Director of the Down Syndrome Association of Memphis and the Mid-South. Their mission is to empower and advocate for individuals with Down syndrome. Lori also talks about the various programs and services they offer, such as self-advocate classes, tutoring, and social events. She mentions their upcoming fundraiser, the Step Up for Down Syndrome Walk, which will take place on October 29, 2023.

Timeline:

2:10 Lori's background

3:38 Tennessee transitioned from institutionalization to community-dwelling for persons with disabilities.

4:17 Services provided by DSA of the Mid South.

10:02 Service area of DSA.

11:49 Is DSA an affiliate or chapter organization?

14:18 October is Down Syndrome Awareness Month and Oct 29 is STEP UP Walk for Down Syndrome.

17:26 Closing Remarks.

In episode #98 of the Raising Kellan podcast, host Marsh Naidoo is joined by Professor Alex Capps who was interviewed on Episode #92, and four students from the Fab Lab at the Wond’ry Vanderbilt's Center of Innovation. They discuss their work in adaptive fashion and the impact it has on the disability community and beyond. The students share their experiences and the skills they have gained through their work at the Wond’ry, highlighting the importance of collaboration and problem-solving. They also discuss the future of adaptive fashion and its potential to create a more inclusive world. The episode concludes with closing remarks from the students, expressing gratitude for the opportunity to be part of the Wond’ry and their excitement for the future of their work.

Students interviewed: Brinda Ambal, Trieu Vy Trong, Sophia Potter, and Jeremiah Crosswhite.

Timeline:

2:00 Introductions and Visual Descriptions

4:09 Impetus for this podcast episode.

5: 16 What put y'all on the trajectory to join the Wond'ry and what are some of the adaptive fashion projects y'all have collaborated on?

13: 08 Y'all come from such diverse backgrounds? So has fashion always been something on your radar?

16:46 Student current majors?

17:52 Your experience with regard to the disability community.

20:55 How do you believe the experience at the Wond'ry is going to add a layer to your future work experience?

23:21 Closing Remarks.

A copy of the transcript will be shortly available at www.raisingkellan.org

Houston High School in Germantown Tennessee is on fire!!! They host a transition school-to-work program and today I chat with Catherine Sadler and O'Malley two incredible teachers who lead the program together with Mr Brian.

Timeline

01:29 Memphis Disability Network

02:27 Introductions

04:09 What is the backstory of the transition program at Houston High

11:24 When do you start transitional planning for a student with an IEP

12:40 Pre-vocational training

16:38 ADL Training

19:34 How do y'all facilitate community opportunities for your students to gain workplace skills

24: 33 What opportunities are available to students after they graduate?

29:58 Project Search

24:22 Future Plans

29:58 Closing Remarks

The transcript will be soon available at www.raisingkellan.org

Today we are going to chat about the Eagle Access Program, a post-secondary program for Students with Intellectual and Developmental Disabilities. We are joined by: Dr. Brigham Scallion, who is a co-founder of the program, as well as the Northwest Representative of the Tennessee Council for Developmental Disabilities; Dr. Jimmy Barham, who is the Dean of Arts and Sciences and Technology and part of the Planning and Implementation Committee at Eagle Access Program going at DSCC; Dr. Amanda Walker the Vice President for Institutional Advancement at the College and Nikki Erickson who is the current director of the Eagle Access Program.

Timeline:

00:19 Introduction with Visual Descriptions.

02:28 What is Eagle Access

03:22 Backstory of the Program

04:20 Planning and Implementation.

06:56 Pathways and referral sources to access the program

08:55 Transportation to College

09:33 Vision for the Program

13:04 Where to after the completion of the 2-year program

16:53 Mentoring as part of the program

18:16 Application Process to the program

20:49 Future wishes for the program

24:45 Service Area that the program serves.

26:04 Closing Remarks.

A transcript of the podcast is available at www.raisingkellan.org

For further information about the program contact:

Nikki Erickson
Eagle Access Program Director
731-286-3208
erickson@dscc.edu

19:16 Contact information: Rob Wruble

The transcript will be soon available at www.raisingkellan.org

This episode is brought to you by Anderson Consulting in Dyersburg TN

Today Jay Camperlino presents information on a new program being rolled out by the Tennessee, Department of Intellectual and Developmental Disabilities, called MAPs

Timeline:

01:56 Jay Camperlino's background and how he came to join the MAPs initiative.

08:11. What is MAPs?

17: 46 Selection Criteria to enroll in the program:

1) Transitional-aged student that has a diagnosis of intellectual and developmental disability that is getting ready to graduate from school.

2) Individual lives in the State of Tennessee.

3) Cannot be concurrently enrolled in a long-term program like ECF Choices.

19: 33 MAPs include tech solutions and value-based solutions such as VCRM to help achieve identified milestones in selected outcome areas of home, work, or community life.

27: 52 How does MAPs sync with work placement and vocational rehabilitation?

32:31 Closing Remarks

Edited Transcript coming soon at www.raisingkellan.org

This episode is sponsored by Anderson Consulting LLC, your one-stop shop for your IT needs.

Today I chat with Alex Sargent Capps, Allie Schmidt and Stella Barron about Adaptive Fashion. Alex has served on the Vanderbilt University Theatre faculty since 2001. She is currently the director of the Fiber Arts Build (FAB) Lab at Vanderbilt’s Wond’ry Center for Innovation, serving the Vanderbilt and Nashville community by providing sewing and clothing design instruction to support people of all skill levels in the development of their creative ideas. Alex teaches costume design, fashion history, adaptive and sustainable fashion, focusing on how the process and product of design, through all mediums, most especially textile art, enhances the quality of our lives and relates to important issues in our contemporary world.

Allie Schmidt, is the owner of Disability Dame Consulting, where she work with businesses to help create products and marketing campaigns that are accessible to the disability community. She identifies as physically disabled from a rare, undiagnosed illness that has left her arms paralyzed. She have a three-year-old son named Asher and a baby girl due in September 2023. She initially started Disability Dame as a website that gives tips to moms with disabilities and chronic illnesses. However, she quickly realized that what companies really needed was marketing and product development advice from someone with the lived experience of disability - that’s when she pivoted into more of a consulting role. She is now working with Alex on building an adaptive fashion lab at Vanderbilt University‘s, The Wond’ry.

Timeline:

01:42 Introductions and Visual Descriptions.

04:24 Allie Schmidt: Disability Dame Consulting.

07:17 Alex Sargent Capps and the work done at the Wond'ry Vanderbilt Center of Innovation.

08:55 What is adaptive fashion and the a description of the adaptive cape designed for Allie.

12:15 Stella weighing in from a mom's point of view on what she sees in the adaptive fashion realm and some of V's needs.

14:18 Bespoke vs universal solutions vs cost.

18:01 Revival in sewing interest.

20:25 Allie's lived experience of parenting with a disability

24:24 The language of disability: Universal design vs Adaptive Fashion vs Inclusive Design.

25:05 Closing Remarks.

An edited transcript is available at www.raisingkellan.org

This episode is sponsored by Dyersburg State Community College

Eric Jorgensen is the Founder of True North Disability Planning, the go-to resource for families who have children with intellectual/developmental disabilities and the professionals who serve them. He is the host of the “ABCs of Disability Planning” podcast which introduces listeners to organizations and resources they may have never heard of or weren’t sure how to use. And he is the author of Waypoints – a monthly deep dive into disability planning topics.

Timeline:

01:45 Eric's Backstory

08:31 Seeing a need and taking action.

09:39 How does Eric help families?

13:05 SSI vs SSDI

17:58 Preserving Medicaid benefits for persons with disabilities

19:48 Eric's roadmaps for 50 States to navigate the maze of disability resources and benefits

20:25 Eric's podcast: The ABC's of Disability Planning

25:00 Eric's vision for disability planning and recommendations for some other podcasts he enjoys: Lomah, Parenting Impossible and Afford Anything.

This episode is Sponsored by Dyersburg State Community College.

The transcript is available at www.raisingkellan.org

10:25 Kirsti volunteering at AWAKE

11: 30 Coaching 411 in Developmental Therapy

13:30 Kellan's therapy

15:00 Kirsti's PArent Takeaways.

Most states have a free voluntary Early Intervention Program available to families who are concerned about their child's development. In the State of Tennessee, this program is called TEIS and is part of the Department of Intellectual and Developmental Disability.

This program is brought to you by Shari Tidwell FNP at Family Practice Clinic.

In this conversation Erin Riehle talks about Project Search as an intensive transitional program from high school to competitive integrated workplaces as part of a 9-month program

Timeline

03:00 What lead to the formation of Project Search?

08:30 How does the program work?

21:30 How does it work as far as employer buy-in?

26:30 Project Search Conference in Milwaukee week of July 10, 2023

30:00 Conclusion

Transcript can be found www.raisingkellan.org

This is episode is brought to you by Shari Tidwell FNP at Family Practice Clinic in Dyersburg TN

In today's episode, we chat with Sophie Poost, Director of Programs at Disability EmpowHer Network, an organization that empowers girls and young women with disabilities through skills building, community, and mentorship. Their flagship program is a Camp held in June in the Adirondack mountains of Northeastern New York, followed by a project completed by the participants and guided by their mentors who they are paired with at Camp. They then get to share this project with the group when they meet up in July in Washington DC. Camp doesn't stop there! EmpowHer Network provides ongoing mentorship and representation of positive role models as these young persons with disabilities embark on their careers.

Another innovative and ongoing program is "A Letter from a Role Model". Here the youth can apply to receive a letter from a mentor/role model who is further along in their journey. I can't wait to check in with Sophie and some of the program participants later this year to hear about their camp experience!

Timeline:

1:36 Sophie Poost Story from Amputee to Advocate...

8:17 What is EmpowHer Network?

11:54 How does one enroll in Camp?

21: 58 Closing Remarks and contact information.

An edited transcript is available at www.raisingkellan.org

This episode is sponsored by Rebecca Renfro from Move Up Physical Therapy.

I spoke with Colleen Starkloff of the Starkloff Disability Institute last year on Episode #66 when we discussed workplace diversity, equity and inclusion initiatives, disability as part of the diversity, and the Disability Rights Movement. Today we talk: Universal Design and Accessibility.

Timeline:

3:29 What is universal design?

4:46 Colleen's Kitchen Redo by Compass Design

7:57 Retrofitting a home vs thinking of universal design before the build.

11:30 Disability as part of the aging process.

17:32 Realtor Multi-list servings featuring accessibility.

20:46 Congregate Living and Independent Living.

24:50 Ronald Mace and universal design.

28: 40 Advice on designing a bathroom for access.

33:50 Doorways.

This episode is sponsored by Rebecca Renfro of MoveUp Physical Therapy in Bartlesville, OK

An edited transcript will be available shortly on www.raisingkellan.org

Is toe-walking something we outgrow? These are some of the questions answered in today's podcast with Liesa Ritchie PT, DPT, PCS from Know To Change for both parents and health providers alike.

1:35 Liesa's Background.

4:57 What sparked Liesa's interest in toe-walking?

7:08 "KnowToChange" as a resource guide for both parents and healthcare providers.

9:13 Is toe-walking something you outgrow?

12:13 Causes-Contributing Factors to toe-walking. " Movement begins and happens at the brain"-LIesa Ritchie

14:12 Possible treatment options.

16:21 Liesa's tips to address toe-walking

18:35 Resources. "If there is a lack of research it doesn't mean there is an absence of evidence. Sometimes there is a lot of research but it's not necessarily supported in the research."

An edited transcript is available at www.raisingkellan.org.

This episode is brought to you by Move Up Physical Therapy in Bartlesville OK

In today's episode, Dr. Jerry Kartzinel tells us more about the work he and his family are doing at Home Life Community and their goal of establishing a forever home for persons with disabilities to address the increasing housing crisis. Look what they have planned right here in NortWest Tennessee.

TimeLine:

03:00 Dr. Jerry's backstory

06:30 What is Home Life Community?

15:00 Work/Employment opportunities for adults with IDD?

17:00 How can parents find out more?

20:54 Future planning needs of the community?

An edited transcript is available at www.raisingkellan.org

This episode is sponsored by Move Up Physical Therapy in Bartlesville, OK

April is Autism Awareness Month. Today we chat with Rachel Jenkins and Colin Peterson. Rachel is an educational consultant, and part of TRIAD, which is an acronym for the Treatment and Research Institute for Autism Spectrum Disorders at Vanderbilt Kennedy Center which is part of Vanderbilt University Medical Center in Nashville, TN. As part of this work, Rachel is also a member of the All Access Inclusion Network.

TRIAD provides a robust library of resources for parents, educators, and providers working with individuals with autism, and the All Access Inclusion Network, is a partnership of community organizations that promote meaningful inclusion and participation of individuals with disabilities.

Colin Peterson is the educational director at Nashville Children's Theater which is one of the community partners of the All Access Inclusion Network.

On this podcast, we discuss:

2:51 What are TRIAD and the AAIN?

7:00 The Nashville Children's Theatre. Sensory-friendly performances vs neuro-inclusive shows. Sensory room, Sensory Interpreters, Sensory Stories, and Try-It-Again Policy. Discounted tickets to the neuro-inclusive shows, when you signed up for the All Access Inclusion Network Newsletter.

19:19 Other partners in the All Access Inclusion Network

Contact info: Rachel.ejenkins1@vmc.org

: cpeterson@Nashvillect.org

An edited transcript is available at www.raisingkellan.org

This episode is sponsored by Move Up Therapy

Mark is the Founder & CEO of Camp Conquest, an overnight camp for children and adults with special needs and disabilities in Millington, TN. He and his wife, Amanda, are blessed with 5 great kids, ages 15 to 27, and 2 grandchildren. Mark and his family live in Arlington, TN. He grew up in Dallas, TX, where his parents took in 28 foster children when he was growing up, and several had a special need or disability. His message is that camp builds confidence, community, and social interaction.

Call to Action: Since we require a 1:1 ratio (camper: counselor), we need lots of volunteers to help make camp safe and fun. We need volunteers, ages 13 - 65. For more information on how to volunteer contact Camp Conquest on their website.

Timeline:

2:00 Origin story of the camp in 2010.

5:16 Original camp was modeled after Camp Barnabus in Missouri.

7:00 Lindsay Hayes.

8:00 Who does the camp serve?

10:00 Logistics of planning camp and the need for 1:1 volunteers.

12:OO Training of volunteers.

15:00 We need your help and how can you serve.

21:00 What a day at camp looks like

23:00 Conclusion.

An edited transcript will be available at www.raisingkellan.org

This episode was sponsored by Move Up Physical Therapy.

Mike Poole of Walk This Way Oxford is well known as The Coach for children with Cerebral Palsy. In today's episode topics covered and timeframes are:

02:00 Expectations

04:00 Mindset

07:00 Massage and Manual Therapy

09:00 Training, Therapy, and Emotional Responses.

12:00 Teaching kids how to fail

13:00 Mike's Background

20:00 St Louis Children's Hospital

25:00 Time Spent in Therapy

28:00 Accountability

32:00 Different Providers, Different Opinions 

An edited transcript is available on www.raisingkellan.org

March 25, 2023, is Cerebral Palsy Awareness Day

In today's episode, we chat with Katrina VanBuren Ed.S and Annette Graves, MEd, MACR from Arc Tennessee, Family Engagement Project. 

Timeline: 

Introduction to Annette Graves and Katrina VanBuren

03:40   What is an IEP and 504 plan and how are they similar/different?

10:14   Abbreviations commonly used in Special Education: FAPE, LRE, PLEP, accommodation vs modification.

15:49  Tests for eligibility determination of placement.

17:51   How to reach a resolution amidst disagreement.

22:00 Upcoming Events

23:40 Words of encouragement

An edited transcript is available at www.raisingkellan.org

Bio:

Annette Graves, MEd, MACR, wife, Mom, and grandmother. Former 35-year educator in regular and special education inclusion classes. Currently employed with the Arc. Tn. as a Regional Family Engagement Specialist serving in the Northwest Region in Tennessee.

Katrina VanBuren, Ed.S,  Regional Family Engagement Specialist for the Southwest region of TN.  Licensed Educator, and Licensed Administrator for the state of Tennessee and Mississippi

John Shouse and his wife Janet are parents to 3 adult children, Emma Shouse Garton, and twin boys Evan and Brendan who are now 27.    Evan is on the autism spectrum.   John has been involved at the local, state, and national levels in the disability advocacy community, including stints as presidents of both Autism TN, and The Arc TN.  He was on the national board of The Autism Society of America. He co-authored the book "The Autism Checklist - a Guide for Parents and Educators".  

John has a special interest in helping fathers of children and adults with disabilities discover how to be active and engaged parents, and how to find joy in the midst of the challenges of living a full life.

Timeline

03:29  The origins of John and his family's advocacy work in the disability community.

06:00 Evan's diagnosis.

11:50  Partners in Policymaking Program

16:40  Tennessee Day on the Hill (3/8/23)

19:00 The importance of telling your story to policymakers.

21:50 Autism Tennessee

25:17. John's advice on self-care.

28:00 Resources: TheVeryStuff.com, "You Gonna Love that Kid" by Paula Kluth, Autism Checklist Guide for Parents and Educators by Paula Kluth and John Shouse, 

32:00 Middle Tennessee Dads MeetUp.

John can be contacted at jmshouse@bellsouth.net

An edited transcript can be located at www.raisingkellan.org

In today's episode, I chat with Jeff Strand who is the Coordinator of Government and External Affairs at the Tennessee Disability Coalition. The Tennessee Disability Coalition is an alliance of organizations and individuals joined to promote the full and equal participation of people with disabilities in all aspects of life.

This year TDC will be hosting an in-person event Disability Day on the Hill on March 8, 2023, in Nashville TN. This is a chance to gather as a community and take part in the legislative process. The priority Bills on the table this year include: 

1)The ABLE Estate Recovery- "This bill would prohibit the state from seeking estate recovery (clawback) of funds in an ABLE account following the death of a beneficiary, beyond what is required by federal law."(Source TDC Newsletter)

2) Right to Repair- "This bill would prohibit insurance companies from requiring a prior authorization for the repair of power wheelchairs and some durable medical equipment"(Source TDC Newsletter)

Timeline: 

2:47  The workings of the State General Assembly

9:10  How to get an Idea to the Hill.

9:56  Priority Bills for TDC 2023

10:42 Bills of Interest: Corporal Punishment, Paid FML, Mechanical Restraints, Third Grade Retention

21:00 Tennessee Disability Day on the Hill Events:

2023 VIRTUAL EVENTS

Webinar with Legislators

1pm CT - Thursday, March 2nd, 2023

Disability Advocacy Day

Saturday, March 11th, 2023

IN-PERSON EVENTS

TDC Community Party

5-7pm CT - Tuesday, March 7th, 2023

Disability Day on the Hill

9am-2pm CT - Wednesday, March 8th, 2023

Here are some ways to participate: Hashtag #MyTennesseeLife for social media posts related to the event

You can email jeff_s@tndisability.com to receive weekly updates on the above-mentioned Bills

You can also join the Facebook Group: Tennessee Disability Advocates Group

An edited transcript of this podcast can be found at www.raisingkellan.org

Pete Hixon of Woodstock GA has been married to his wife Hollie for 25 years. They have 2 girls - Addie, a freshman at Samford University, and Hope, in her second year at Shepherds College. By occupation, Pete is a speaker and business coach. By passion and as a parent, he is an advocate for the special needs community. Pete and his wife lead an organization to build residential communities for young adults with intellectual and developmental disabilities called Beyond Communities.

Timeline:

04:00  Pete Hixson's background

06:00  Impetus for Beyond Communities

09:20  Vision for the Beyond Communities

14:00  Mixed-Use Development

19:00 Pathways to access housing options at Beyond Communities

22:00 Assessment process for application to rent in the Beyond Community Model

23:41. Words of Encouragement

27:00 Pete can be reached at pete@beyondcommunties.org 

Pete's Call to Action: I want to educate listeners on the fact that we will see far more potential when we create more environments designed specifically for each “ability” category within this community. My call to action is to get involved with someone doing this or start your own and invite others to join you.

Link to an edited transcript of this podcast.

In this episode, we chat with Lia Stoll of DisabilityWriter.com. Lia is a mom, wife, writer, co-founder of Lara Guide Dog in Greece and founder of Disability Writer, a boutique writing studio voicing accessibility and inclusion for disabled people.

Timeline: 

00:14  Introduction

04:16  What is the origin story of DisabilityWriter.com

06:57 Lia's connection with Lara Guide Dog School

12:58  How long has the Guide Dog School been in operation?

13:14  What is your responsibility at the Guide?

14:11  How does the process of training a guide dog work?

17:05 Tell us about DisabilityWriter.com.

19:33 How do we and why do we need to move towards digital accessibility?

21:09  Your top two blog posts?

23:06 You can contact Lia at info@disabilitywriter.com

A transcript of this podcast episode is available at www.raisingkellan.org 

Ange Anderson M.Ed opened and led an innovative specialist school in North Wales for 10 years, introducing over 25 different therapeutic/technological interventions to support pupils with learning differences. She’s written a number of books focused on SEN (Special Educational Needs) on therapeutic and technological interventions including VR, AR & AI in SEN; Trampolining for Children & Young People with SEN; Music, Sound and Vibration in SEN; and Learning through Play for SEN, all published by Routledge. Ange also presents internationally on topics related to special education.

Timeline:

02:30  What is Neurodiversity? 

03:54 What is Virtual versus Augmented Reality?

05:32. What led you to use VR to support your students with learning differences?

10:30. What are some of the benefits of VR?

13:30 How does VR help develop social skills?

16:17. Ange goes on to explain that VR does not mean headsets but rather transmitters /receivers that are used to give a room a 360-degree immersive experience

20:53. What would you say to those who believe that VR is an expensive gimmick in its educational application?

22:15 Best way to contact Ange Anderson? https://angeandersontherapeutic.co.uk/

An edited transcript is available at www.raisingkellan.org

Disclaimer: The use of VR/AR described in this podcast includes rooms designed with transmitters and receivers and does not include the use of headsets. Please consult a trained healthcare provider in your location before the use of technology as a rehabilitation tool.

Rachel Talks about Paws to Care and the Dyersburg Dyer County Humane Society

Ms Sara talks about Addi's Haunted Trail which happens next Saturday, October 22, 2022. 

Transcript 

David married his high school sweetheart Peggy and after the birth of their fifth child, he began to feel pressure at work but mostly on the home front as he sought to become a good role model to his kids and not replicate his early life experience. Concurrently during this time, David committed to a three-year Kellogg Fellow Program and he came across some astonishing statistics. There are 24 million kids growing up in America in father-absent homes, which accounts for 4 in 10 households(Source).  This began David's journey to break the cycle of father absence and to advocate for dads to be present: physically, emotionally, and spiritually, while also meeting our financial obligations.

Resources:

https://www.4dads.org/

https://21stcenturydads.org/

Transcript to this episode

Link to transcript

They are parents to three daughters including Alaina, the youngest who has complex medical needs. Chrissy was instrumental in leading the movement to get legislation passed to install powdered height-adjustable adult changing tables in the State of Tennessee. A detailed bio of this story of parental advocacy can be found at www.raisingkellan.org  in the transcript

Timeline:

00:00 - 02:15:  Intro

02:15 - 03:30:  Chrissy and Alaina's Story

03:30 - 06:45:  What was the motivation for the advocacy to get the adult changing tables installed throughout Tennessee? 

06:45 - 08:39:  What is Changing Spaces TN?

08:39 - 09:57:  Grant and funding opportunities for adult changing tables in Tennessee.

09:58 - 11:13:  Who is able to apply for the grant? Link to Application.

11:14 - 12:46:  Partners in Policy Making Program

13:04 - 14:20:  Marshall the Mascot from the Tennessee Disability Coalition

14:20 - 16:07: Chrissy can be contacted at connectingthejourney@gmail.com

17:17 - 19:00:  Outro

Resources: Chrissy and Alaina's Story https://youtu.be/HCSHn50_JV0

Emily Ladau is a passionate disability rights activist, writer, storyteller, and digital communications consultant whose career began at the age of 10, when she appeared on several episodes of Sesame Street to educate children about her life with a physical disability. Her writing has been published in outlets including The New York Times, SELF, Salon, Vice, and HuffPost.

Her first book, Demystifying Disability, was published by Ten Speed Press, an imprint of Penguin Random House, in September 2021.

Emily has spoken before numerous audiences, from the U.S. Department of Education to the United Nations. Central to all of her work is a focus on and harnessing the power of storytelling as a tool for people to become engaged in disability and social justice issues.

Timeline of the podcast:

00:10 - 01:24  Intro

01:25 - 03:00  Emily Ladau’s background

03:05 - 05:02  Emily’s definition of disability and concept of ableism

05:03 - 08:00  Language of Disability

08:01 - 10:17  Language of Disability

10:25 - 13:40  Intersectionality as it relates to disability discussion

13:45 - 15:12  Role of parents

15:15 - 16:30  What is infantilization?

16:35 -17:37  Current concerns in the community?

17:40 -18:35  Closing Remarks

Emily’s call to action: “Disability is not negative or shameful and allyship is action.

This podcast was produced by Marsh Naidoo, Makendra Ezell, and Tanya Sierra.

Melissa Mittelstaedt provided captioning and transcription at https://www.melissamitt.com/uaccess

Link to transcript

Related resources on the podcast and blog: https://www.raisingkellan.org/the-models-and-language-of-disability/

Ashley practices statewide in Kentucky and Ohio and also operates a business to empower and inspire parents and advocates in special education, which can be found at www.ashleybarlowco.com. When not working, she is normally at the pool with her husband and two sons, one of whom has Down syndrome.

Timeline

2:00 Who is Ashley Barlow and the origins of Ashley Barlow Company?

4:45 Parental emotion vs the I.E.P

8:07 Ashley's recommended advocacy resources including Wrights Law

10:35 Ashley's parental tips and strategies: communication and compartmentalization.

15:00 Transition planning and the continuum of care (your child's employment preferences vs profiles, 5 areas of life that parents need to consider when planning their child's future, supported decision making)

26:00 Closing remarks and contact information.

Transcript

Check out the work being done at On the Avenue

Timeline:  

00:00-01:56 Intro  02:15-04:54 

Origin Story  04:54-07:36 Workplace/ Creativity at the "On the Avenue"  

07:38-10:07 How to enroll  

10:20-13:13 A "On the Avenue" marketplace  

13:15-14:53 Community and Business Partners  

15:00-15:20 Website and Shoutout  

16:25-17:50 Thanks and outro  

July is Disability Pride Month and Judy Huemann does an amazing job describing what disability pride means to her as well as sharing the voice of other individuals throughout the world who identify as persons with disabilities. Be sure to check out her podcast the Huemann Perspective on Apple and Spotify

Transcript

(@photos.bybe). Learn more about her passion for food science, and all things creative at Ali-Manning.com

Timeline:

00:00 - 1:41 Intro of episode

1:42 - 2:39 Intro of Makendra Ezell our summer intern

2:40 - 3:29 Who is Ali Manning?

3:30 - 4:59 What inspired Ali to write " Can I play with my Food?"

5:00 - 6:54 The story behind the book

6:55 - 7:54 What had driven you to become the successful woman you are today?

7:55 - 8:49 Ali gives advice to young people...

8:50 - 11:06 Ali talks about her hobbies

11:07 - 12:19 What does a food scientist do?

12:20 - 13:22 How to pursue being a food scientist?

13:23 - 14:41 Ali gives advice on how to be a motivational speaker

14:42- 15:59 Message for listeners

16:00 - 16:59 Closing with Ali

17:00 - 17:39 Ali social media handlers

17:40 Outro and give away

Website: Ali-manning.com

IG: aliglad_carpediem

Email: info@umamifcc.com

Transcript

Sergio Calderon is the founder of Valiant Fitness. He provides an all-inclusive functional training program for individuals of all abilities. His program was created after awareness that community-based fitness programs were not available to serve individuals with IDD and Mental Health needs. Sergio lives in Murfreesboro, TN but grew up in a small town named Fillmore in Southern California. 

Sergio says: " I always wanted to work with people to help them be the healthiest version of themselves. While I wasn't sure how that would look, I had a passion for helping people. I began my schooling by majoring in Kinesiology. At that time, I worked at a physical therapy clinic." 

"Unfortunately, during my time in college, I had an accident and suffered a traumatic brain injury along with several broken throughout my body. This re-routed my life completely. In one night, my goals changed to fighting for my life, finding the strength to overcome the physical and mental limitations that I now faced, and learning to walk, talk, and live a functional life again."

 "After many months of therapy of all kinds, I began to see myself again, I was able to think about the dreams that I once had and found ways to pursue them. I know now, more than ever, that I wanted to help people. I had a new sense of compassion and understanding after living with so many limitations. After that, I enrolled back in school. I received my Bachelor's in Kinesiology shortly after. I worked with the community through many different facets when I was finally introduced to the field I am currently in. I worked as a coach with the special needs population at another local gym back home. In my time there, I was able to really grow as a person and as a coach."

" I furthered my experience and truly fell in love with the public in this capacity. I had known for years that I wanted to create my own Fitness Program. In fact, I knew what the name would be shortly after my accident. When life finally led me to a place where I could make that dream a reality. Valiant Fitness was born. To be Valiant means to show courage and determination, which is a trait that I see in my students every single day."

Timeline: 

1:30 Sergio's Intro

2:00 Origin Story of Valiant Fitness

5:12 Tell us about your program

6:30 Who are the clients that you primarily serve?

7:40 Your from CA > TN

11:30 What is generally involved in a workout session with you?

13: 00 Advise to parents: Believe in your child's ability to do more than what they have been told. 

My call to action is to provide the right support system in order for your child to excel in their physical abilities.

Sergio can be contacted at sergio.valiantfitness@gmail.com and reached

Instagram: https://www.instagram.com/valiantfitnessscv/

Facebook: https://www.facebook.com/ValiantFitnessSCV/

Transcript 

Colleen and Max Starkloff founded the Starkloff Disability Institute in STL, MO. 

Do yourself a favor and check out the work being done here to empower students and young adults with disabilities to think creatively and proactively about their future. 

Colleen chats with us on a wide range of topics including the Disability Rights Movement and History, ADA, Universal Design as well as the innovative programs offered at the Institute.

Timeline:

2:15 The Institutes Mission. We discussed the Origin Story and the programs offered by the Institute including The Dream Big Camp and  Access U.

11:13 Diversity, Equity and Inclusion and educating Corporate America.

15:00 Affecting change in societal disability perspectives.

23:00 Disability Rights Movement within the context of Human Rights.

Transcript

BIO: Dr. Alyssa Walz, PT, DPT is a pediatric PT born and raised in Atlanta, Georgia. She is the Professional Development Director at Tender Ones Therapy Services where she has worked for the last 7.5 years. Dr. Steve Doran and Dr. Alyssa started the Stand Up Paddle Boarding Aquatic Therapy program in 2015, and co-founded the Paddle Boarding PT/OT Camp with OT Nilka Clayton. Alyssa works PRN at Children's Healthcare of Atlanta and Integrated Therapy doing aquatic therapy with children and adults. Alyssa is on the race team for the Kyle Pease Foundation which creates awareness and raises funds to promote success for persons with disabilities by providing assistance to meet their individual needs through sports. Alyssa loves to paddle board, hike, do yoga, run, travel, teach and share her love for life with the world.

Timeline: 

2:00 Who is Alyssa Walz, PT, DPT?

4:00 How did you get the SUP program set up?

9:27 Line up for the Summer?

10:30 Dates for the Camp

11:30 Volunteers

13:00 Why Paddle Boarding?

Alyssa's Takeaway: "Don't be afraid to try something new"

Transcript

As the mother and primary caregiver of a special needs child, Carla Christensen has spent over 20 years navigating the world of special education and medical advocacy. She's brought that hands-on experience to her role as Marketing Director for MAX-Ability, where she relishes the opportunity to work with groups like Changing Spaces, Universal Changing Places, Love Hope & Autism, The On-Air Advocate, and now Raising Kellan to increase awareness of a variety of special needs, particularly restroom accommodation for all.

Carla's Takeaway: "Accessibility is NOT accommodation. We all benefit when everyone can get out and about to lead their fullest lives, and that means accommodating the person, not the wheelchair."

Timeline: 

2:00 Grass roots advocacy for adult changing tables in Tennessee SB 0602/HB1686

3:00 Origin of MAX-Ability

5:00 Why adult sized changing tables?

7:00 Funding and possible solutions for small businesses

10:00 Carla's Backstory

14:00 Where would you like to see adult sized changing tables?

Why are adult sized changing tables valuable? This is a video of Chrissy advocating for an adult sized changing table for her daughter https://youtu.be/HCSHn50_JV0

Thank you to We Rock the Spectrum Gym in Franklin Tennessee for sponsoring this episode. You can learn more about WRST on Episode 54 of the Raising Kellan Podcast

Transcript