Staring Down the Storm: Autism Advocacy in America

Today we welcome John Dickerson and Kathy Davis for a conversation about the history, current state, and future of disability rights and services in Indiana.

John shares his long tenure in advocacy starting in 1973 with the Arc of Indiana, recounting the evolution from institutionalization to more inclusive community-based services.

Kathy, the Lieutenant Governor of Indiana from 2003-2005, reflects on her earlier pivotal role as Secretary of the FSSA during a crisis at Newcastle State Developmental Center and the subsequent reforms.

We talk about the importance of high expectations, advocacy, and systemic changes that have led to more inclusive and supportive environments for individuals with disabilities.

Recent threats from the Indiana government and federal government have suggested that disability rights could be rolled back, even to a return to forced institutionalization of decades past.

As much as it is hard to believe that we may have to fight this fight again, we need to be clear-eyed and prepared for what may be coming in the near future.

John and Kathy are here to stress the significance of building a better future through community involvement, policy innovation, and continuous advocacy.

Further links and research related to this episode:

• John Dickerson

• Kathy Davis

• Understanding Trump’s Executive Order on Homelessness: A Return to Forced Institutionalization (Marcy Thompson, National Alliance to End Homelessness)

• The Final Years of Central State Hospital (Ellen Dwyer)

• New Castle State Developmental Center Investigation WISH-TV8, 1997 (YouTube; follow links in video for full series)

Contact Tabitha:

[email protected]

I continue my important discussion with lawyer Jeff Stinson this week in part two, where we dig deeper into the complexities of guardianship issues, particularly concerning individuals with autism, ADHD, and other disabilities, and the unsettling national conversations around these topics.

We discuss the historical and contemporary aspects of guardianship, the importance of alternatives to family guardians, and the resources available in Indiana. Jeff and I talk about special needs trusts, ABLE accounts, and the critical need for early and proactive planning for the futures of special needs individuals.

We also circle back to the vital role of volunteers, the benefits of internships for young people considering elder law, and the necessity of educating families about legal options to prevent crises. devices, and ensuring comprehensive care plans are in place.

How to reach Jeff Stinson and Stinson Law Firm:

Website ⁠⁠⁠⁠⁠⁠⁠-

⁠https://stinsonelderlaw.com/⁠

Email -

⁠[email protected]⁠

Address -

650 East Carmel Drive, Suite 230,Carmel, IN 46032

on ⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠

on ⁠⁠⁠⁠⁠⁠⁠LinkedIn⁠

Contact Tabitha:

[email protected]

My conversation this week is with lawyer Jeff Stinson of Stinson Law Firm, in Carmel, Indiana. Jeff specializes in Elder Law, and has a particular interest in how it applies to parents and caregivers of children with autism, and the broader disability community.

Jeff emphasizes the importance of proactive planning, especially when a child with disabilities approaches the age of 18. He shares insights into Medicaid waivers, Supplemental Security Income (SSI), and the new supportive decision-making framework, while also highlighting the challenges and solutions related to transitioning to adulthood.

Jeff also discusses his personal journey into this law specialty and the collaborative efforts of a coalition working to protect disability services in Indiana.

How to reach Jeff Stinson and Stinson Law Firm:

Website ⁠⁠⁠⁠⁠-

https://stinsonelderlaw.com/

Email -

[email protected]

Address -

650 East Carmel Drive, Suite 230,
Carmel, IN 46032

on ⁠⁠⁠⁠Facebook⁠⁠⁠⁠

on ⁠⁠⁠⁠LinkedIn

Contact Tabitha:

[email protected]

Noble is a landmark organization and support system in central and eastern Indiana, dedicated to expanding opportunities and enhancing the quality of life for people with disabilities and their families through individualized services.

Molly Lang is Director of Therapy Services, and joins me today to talk about how Noble has grown and evolved over the past 70 years. Originally started as a school, they now have several branches that provide services for adults with IDD. Some of their branches offer services to children, and Noble also provide autism services like ABA.

Noble started by a group of parents coming together to form a school in the 1950s, when their children were otherwise excluded from school, and these parents believed that their children could learn. It has evolved into programs such as early intervention, summer camps, music therapy, and employment services.

Of course, we are at a crucial juncture at this moment in time, and Molly provides insights into funding through Medicaid waivers, advocacy training, support networks for families, and practical steps for families seeking resources and services for children with disabilities.

Noble has long been dedicated to not just improving quality of life for people with disabilities and their families, but to the importance of community integration, so that we can all live and thrive together. Because the more we stay in our own silos, the less understanding, appreciation and joy we will get from others in this diverse society.

How to reach Molly Lang and Noble:

Website ⁠⁠⁠- www.mynoblelife.org/

Email - [email protected]

on ⁠⁠⁠Facebook⁠⁠⁠

on ⁠⁠⁠Instagram⁠⁠⁠

on ⁠⁠⁠YouTube

Contact Tabitha:

[email protected]

For Part Three of our conversation with Sarah McCorkle, our discussion centers on autism, genetic testing, and the emotions and ethical considerations faced by parents.

We look at the fear of misuse of genetic data, distrust in political figures like RFK, government involvement in medical decisions, and the balance between scientific advancement and privacy concerns.

The importance of community support, parental advocacy, and the need for society to become more inclusive of autistic individuals is paramount. Our conversation also touches on broader social and political issues, emphasizing the importance of human rights and the need for systemic change to protect vulnerable populations.

How to reach Sarah:

Website ⁠⁠We Rock the Spectrum: Kids Gym for all Kids - Carmel, IN⁠⁠

on ⁠⁠Facebook⁠⁠

on ⁠⁠Instagram⁠⁠

on ⁠⁠TikTok⁠⁠

Contact Tabitha:

[email protected]

Activist and organizer Sarah McCorkle joins me for this series of conversations on autism and community. We had lots to cover, and are ever-conscious of the time of busy parents so we've split it into three parts!

Sarah, with her mother, runs the 'We Rock the Spectrum Kids Gym' in Carmel, Indiana, a place for sensory-seekers, but moreover, a space for any and all children to interact with one another. It's so important for both neurodivergent and neurotypical children to play together and learn from each other.

Sarah emphasizes the significance of creating a community for both parents and children, noting how isolating being an autism parent can feel. There's a lot of organic community-building that happens at the gym.

We touch on the lack of resources in rural areas, and Sarah shares her own experiences as an autism mom, the challenges of navigating resources and the need to advocate for her children's needs.

We also look at breaking generational attitudes and finding creative solutions to daily challenges faced by autism parents, especially in a current world fraught with backlash, misinformation and wedge politics.

How to reach Sarah:

Website ⁠We Rock the Spectrum: Kids Gym for all Kids - Carmel, IN⁠

on ⁠Facebook⁠

on ⁠Instagram⁠

on ⁠TikTok⁠

Contact Tabitha:

[email protected]

Activist and organizer Sarah McCorkle joins me for this series of conversations on autism and community. We had lots to cover, and are ever-conscious of the time of busy parents so we've split it into three parts!

Sarah, with her mother, runs the 'We Rock the Spectrum Kids Gym' in Carmel, Indiana, a place for sensory-seekers, but moreover, a space for any and all children to interact with one another. It's so important for both neurodivergent and neurotypical children to play together and learn from each other.

Sarah emphasizes the significance of creating a community for both parents and children, noting how isolating being an autism parent can feel. There's a lot of organic community-building that happens at the gym.

We touch on the lack of resources in rural areas, and Sarah shares her own experiences as an autism mom, the challenges of navigating resources and the need to advocate for her children's needs.

We also look at breaking generational attitudes and finding creative solutions to daily challenges faced by autism parents, especially in a current world fraught with backlash, misinformation and wedge politics.

How to reach Sarah:

Website We Rock the Spectrum: Kids Gym for all Kids - Carmel, IN

on Facebook

on Instagram

on TikTok

Contact Tabitha:

[email protected]

Mira and I pick up from where we left off in part one, after a break for a coffee refresh and to stretch our legs. Remember to look after yourself and take the time you need to be productive and effective activists.

Mira shares some more of her personal story with chronic illness. We talk about military veterans, disability rights and complex medical conditions. Gay rights, advocacy and stepping up to the fight.

Like in part one, where we explored the question of rights and respect, in part two we extend that to the question of empathy. Why, in a society that says it basis itself on moral standards and religious teachings, do we struggle so much to simply empathize with what our fellow neighbors and citizens are going through?

Perhaps if we can tackle that question, we can start to come together at last. But sadly, it doesn't look like it will be as easy as it sounds.

Thank you for joining us for the conversation.

How to reach Mira:

⁠Instagram (@mira.hall27)⁠

⁠TikTok (@miramoth)⁠

We encourage you to support The Trevor Project,  the leading suicide prevention and crisis intervention nonprofit organization for LGBTQ+ young people.

⁠thetrevorproject.org/⁠

Contact Tabitha:

[email protected]

I'm joined by fellow activist Mira Hall for a wide-ranging discussion on identity, respect, recognition, neurodiversity, activism, and most importantly: the nature of human rights.

From religion to education, behavioral health, mental health, HIV/AIDS, the political climate, gender identity, school bullying, American values, patriotism, genetic testing, chronic illness - we cover a lot.

And yet underpinning it all is the question of, "What it means to be a good human." How we treat each other, especially the most vulnerable. What do we want this country to stand for?

As per any deep, multi-layered conversation, we needed extra time and thus two parts! Start with part one here, and come back for part two, where we explore more stories from activism, advocacy and action.

How to reach Mira:

Instagram (@mira.hall27)

TikTok (@miramoth)

We encourage you to support The Trevor Project,  the leading suicide prevention and crisis intervention nonprofit organization for LGBTQ+ young people.

thetrevorproject.org/

Contact Tabitha:

[email protected]

Jamie Olson of Uniquely You Indiana joins us today for a conversation about navigating medical changes and complexities with autism, and the role that Medicaid plays in getting the support and resources your family needs.

Uniquely You is a monthly magazine written by families, caregivers and individuals with special needs. Filled with resources and great information to celebrate, impact and connect the community together.

Jamie shares her deeply personal journey of raising a child with severe autism and epilepsy, her path to launching Uniquely You magazine, and her mission to support families in the special needs and disability community.

She discusses the importance of building a support network, the impact of ABA therapy, and the significance of advocating for continued resources.

Jamie also highlights various organizations and events that foster community connections.

Tune in for insights, inspiration, and actionable steps for advocacy.