The Waiting Room

In part two of the two-part grassroots advocacy series, The Waiting Room host Kenneth Kelty is joined by two influential voices in the disability advocacy space, Cheryl Powell and Beth Field. The group discusses the power of grassroots advocacy and its role in shaping policy for the intellectual and developmental disabilities (IDD) community in North Carolina. As the 2024 election cycle approaches, the episode explores the strategies, challenges, and opportunities for mobilizing grassroots efforts to bring about meaningful change.

Cheryl Powell, co-chair of the Lived Experience Network Speaks (LENS), and Beth Field, Program Director of the Leadership Alliance for Neurodevelopmental Disabilities (LAND), share their insights on the importance of amplifying the voices of those with lived experiences to influence policy decisions that affect their lives directly. They discuss the ongoing challenges within the state, such as the long waitlist for the Innovations Waiver, which provides crucial supports for people with IDD, and the shortage of Direct Support Professionals (DSPs) needed to care for them.

The conversation begins with a heartfelt tribute to Bill Donahue, a beloved and respected advocate whose legacy continues to inspire the community. This sets the stage for a broader discussion on what effective grassroots advocacy looks like and how it can serve as a powerful tool for change. Cheryl and Beth emphasize the significance of building strong, grassroots networks that include not only people with disabilities but also their families, allies, and community members who can lend their voices and influence to the cause.

Listeners are encouraged to get involved in the advocacy movement through joining groups like LENS, participating in advocacy days, or simply raising awareness in their own families and communities. Cheryl and Beth share practical steps for listeners to engage with local legislators, share personal stories, and support initiatives that aim to build a more inclusive and equitable society.

Their message is clear: everyone has a role to play in the fight for disability rights, and by coming together, significant and positive changes can be achieved. 

This episode of Meet the Need NC’s podcast, The Waiting Room, is titled Learnings for Grassroots Advocacy: From the ADA to the Olmstead decision. Host Kenneth Kelty introduces the organization and the topic of the pre-recorded webinar. 

The show opens with Beth Field, program director of the Leadership Alliance for Neurodevelopmental Disabilities, introducing herself and explaining Meet the Need NC’s organizational scope and goals. In its third year, Meet the Need NC is focusing on building grassroots advocacy.

Beth then asks the webinar’s co-host, Cheryl Powell — a lifelong disability advocate — to discuss what the words ‘grassroots’ and ‘advocacy’ mean to her. Cheryl emphasizes that she believes ‘grassroots’ comes from an individual person and idea that grows into a larger movement, while ‘advocacy’ means speaking up and not being afraid to express yourself, even if you get pushback. 

Beth then introduces John Nash, executive director of the Arc of NC. John talks about the importance of highlighting families and individuals in his advocacy work and within his organization. John covers many important topics in his presentation including the history of the Americans with Disabilities Act (ADA), the power of building relationships to sustain momentum in grassroots advocacy, and lists action steps on how to “win the battle and the war” in regards to impacting legislation. He also acknowledges the immense challenge of holding back anger when injustices occur, and shares a personal anecdote about experiencing anger (but resisting the temptation to negatively express that anger) when his son was mistreated at school. John also shares the historical anecdote of the ADA, highlighting the relationship between politically opposed best friends, Ted Kennedy and Warren Hatch, who came together to advance the ADA in the legislature. 

In the next section of the webinar, Cheryl Powell shares a pre-recorded interview she hosted with the North Carolina Waiver Action Team, which includes Matt Potter, Sarah Potter, Bill Donahue and Deb Woods. These two families discuss the North Carolina Waiver Action Team’s grassroots origins, arising from lived experience and the desire to make change. With so many individuals and families waiting for disability support services, the families felt that Medicaid was failing to meet the needs of North Carolina’s intellectual and developmental disability (I/DD) community. So, they set out to bring attention to the registry of unmet needs (RUN).

The team also discusses the successes and challenges they have experienced since the organization’s establishment in 2019. 

Kenneth concludes the podcast by listing Meet the Need NC’s social media platforms and calls upon listeners to connect with the organization.

This episode of Meet the Need’s podcast The Waiting Room covers the importance of the phrase “nothing about us without us” through stories of lived experiences from host Kenneth Kelty and guests Cheryl Powell and Dr. Charlrean Mapson.

Starting with its new catchphrase, “sharing true stories while we wait,” Kenneth first talks about the registry of unmet needs, noting that there are over 15,000 individuals in North Carolina waiting to receive intellectual and developmental disability support services.

Mara Waldruff, the show’s new producer, introduces herself and talks about her role in providing more in-depth information about some of the important topics that Kenneth covers in the podcast.

After Dr. Charlrean Mapson and Cheryl Powell introduce themselves, Kenneth elaborates on his role as a self-advocate and introduces the episode’s topic, “nothing about us without us.” Kenneth mentions that he first heard the phrase from his hero, Liz Weintraub. Mara chimes in to give a brief overview of Liz Weintraub’s difficult history as a person with disabilities having to fight for the right to make her own life decisions, but emphasizes that she overcame personal and societal obstacles to become an icon for the disability movement.

Mara also provides a history of the phrase “nothing about us without us,” which dates back to the 16th century and was adopted by South African disability rights activists in the 1980s. James Charlton, an American disability rights activist, later popularized the phrase when he used it for the title of his book which spoke about the global oppression of people with disabilities.

Kenneth, Cheryl and Charlrean have a rich discussion on the importance of having a seat at the table in spaces where decisions are made about their lives and the lives of their friends and families. The trio also covers themes of paid employment and professionalism, tokenism, infantilization, and the power of voting for people with disabilities.

Additional Resources:

• Learn more about Dr. Charlrean Mapson
• Learn more about Cheryl Powell
• AUCD and Tuesdays with Liz: Disability Policy for All

Sources:

• User Clip: Liz Weintraub Testimony
• President Biden Announces Key Appointments to the President’s Committee for People with Intellectual Disabilities
• National Disability Mentoring Coalition: Class of 2018, Liz Weintraub
• Nothing About Us Without Us: Disability Oppression and Empowerment by James Charlton
• Persons with a Disability: Labor Force Characteristics Summary

The Waiting Room is back with a new episode. In this episode, we welcome a Spanish-speaking family who will share their experience of navigating services and supports.  There are many challenges and barriers for many families across North Carolina, but how does the waiting list impact different, diverse communities? TWR welcomes Magnolia Elguera, who is a parent of a child with I/DD. This episode will also have live interpretation in Spanish to ensure we capture these stories authentically. 

The Waiting Room está de vuelta con un nuevo episodio. En este episodio, damos la bienvenida a una familia de habla hispana que compartirá su experiencia sobre cómo navegar por servicios y apoyos. Hay muchos desafíos y barreras para muchas familias en Carolina del Norte, pero ¿cómo afecta la lista de espera a comunidades diferentes y diversas? TWR le da la bienvenida a Magnolia Elguera, madre de un niño con I/DD. Este episodio también tendrá interpretación en vivo en español para garantizar que capturemos estas historias de manera auténtica.

Sit down as our host, Kenneth Kelty, talks with Dr. Pat Porter, Former Chief of DD Services and Senior Policy Advisor to the NC General Assembly is here to talk about the DSP crisis, the history of the DSP crisis and what we can do to help

Welcome back to The Waiting Room hosted by Kenneth Kelty.  This week, we talk with Holly Riddle about the DSP crisis and what we can do to help. 

Meet your host Kenneth Kelty, Public Speaker and Author! Listen in as he shares his story, his advocacy work, and what he hopes to accomplish with this podcast.  In the words of Kenneth "Nothing about us without us!" 

Hello and welcome to The Waiting Room, a podcast that shines a light on the ever growing Medicaid waitlist and unmet needs of people with intellectual and/other developmental disabilities in North Carolina. Join us as we focus on this issue, educate, inform and build a community along the way. I’m award winning motivational speaker, activist, and your host, Kenneth Kelty.

Today I have two very special guests for our first episode. Please help me welcome Executive Director of The North Carolina Council on Developmental Disabilities, Talley Wells, and Program Director for LAND and Meet The Need NC, Beth Field. Meet the Need NC is a new initiative from the NCCDD to address the registry of unmet needs or waitlist, and the unmet services and supports for North Carolinians with I/DD. Today Talley and Beth are going to be sharing with me why The Waiting Room podcast was created and why this podcast is needed now more than ever.