July 2024 Highlights and Hot Topics
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- Message from the Executive Director
- Public Policy Update (as of 7/23/24)
- Initiative Highlight: Community Success from the Ability Leadership Project
- August Self-Advocate Discussion Series: Learn about the Rossi Fund and Disability Voting Rights Week
- Hispanic Disability Outreach: Celebrating Disability Pride Month by Honoring the ADA and the Disability Community
- Save the date for Direct Support Professional (DSP) Recognition Week!
- Boletín en español
- Newsletter in Accessible Audio
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Message from the Executive Director
Kerri Eaker, former Chair of NCCDDFormer North Carolina Council on Developmental Disabilities (NCCDD) Chair Kerri Eaker passed away June 28, 2024. Kerri was a light for the developmental disability community, for families, for our Council, and, most importantly, for her children.
She used her light to show families across Western North Carolina how to find their way through the challenging paths of finding services, medical care, love, friendships, connections, and help as they navigated the byzantine and frustrating developmental disability systems. She used her light to blaze a path back and forth from the mountains to Chapel Hill and across the state for services for her son. She did not put up with the nonsense of a broken system. Instead, she changed it and shined her light on a better way. Throughout, she befriended the leaders and workers who have given their vocations to this work.
Kerri listened. Kerri loved. Kerri led.
Kerri passed six days after the 25th anniversary of the Olmstead Supreme Court decision. Kerri was Olmstead. She believed wholeheartedly that people with intellectual and other developmental disabilities (I/DD) could have meaningful lives and friendships and relationships in their communities. She gave the gift of Olmstead to her son and her families.
She hired me at the Council and met with me weekly to discuss what this new job meant in this state that I entered just as the COVID-19 virus swept across our world.
In those frightening lonely days of masks and sickness, she searched for ways her families and people with developmental disabilities could stay connected and get what they needed. She cared for the families and their loved ones with developmental disabilities as they looked through windows at each other but could not be together.
She championed advocacy.
She spoke truth to our leaders and did not allow no to be an answer.
She found a way, always.
She was a woman of faith who loved her several churches.
And she was fun and friendly and had a great laugh and a cool mountain twang. She made you, whoever you were, feel like you were someone!
As we celebrate Olmstead, our nation’s independence and the Americans with Disabilities Act this summer, make sure to celebrate the independent individuals with I/DD across North Carolina who Kerri loved and served as the angel that she is now.
Kerri Eaker Interview
Ray Hemachandra interviewed Kerri Eaker a few weeks before she passed. Ray supported Kerri and her family in countless ways, particularly in her last year. Here are a few excerpts from Kerri in that interview that Ray shared at her July 20th funeral.
I wanted to figure out how I could give back to others. Why should we have to struggle so hard to be able to get the care we needed [for our son]? Why is this hard? So, when I went into it, I said, okay, I’m going to try to make a difference and help other people not to have to go through [such a struggle]. When I tried to help other families, it dawned on me that that became my purpose. I can make a difference in helping someone else not have to struggle so hard.
Then families learned to support one another—they’d get support, and then pass it along. We celebrated, too. It was fun. We had parties. We invited in community partners, firefighters, dental workers, EMS workers and ambulances, the police department—the whole community wanted to be a part of our families, they really did. They wanted to help us.
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It’s going to take all of us playing our part. We can do this. We just have to take the step and make a difference. Please: just believe.
Talley Wells, NCCDD Executive Director
Public Policy Update (as of 7/23/24)
STATE
Legislative
The NC Legislature ended the short session in June, and it plans to reconvene monthly through the end of year. The House and Senate were not able to come to an agreement on the budget bill, so the session ended without an omnibus budget adjustments act.
In lieu of a budget, two areas of priority were addressed through appropriation bills:
- Child Care Funding – To address the gap in funding created when the Public Health Emergency ended, funds were appropriated to DHHS for Child Care Stabilization Grants. Additional funds were allocated to address the waitlist for children eligible for subsidized child care.
- Teacher and State Employee Raises – Funding to adjust teacher salaries and state employee salaries.
The monthly sessions will address legislative issues such as veto overrides and could possibly address additional budget adjustments. Below is the schedule of planned legislative sessions:
- Monday, July 29, 2024, at 12 p.m.
- Monday, September 9, 2024, at 12 p.m.
- Wednesday, October 9, 2024, at 12 p.m.
- Tuesday, November 19, 2024, at 12 p.m.
- Wednesday, December 11, 2024, at 12 p.m.
The 2023 Regular Session will officially adjourn on December 13, 2024.
Tailored Plan Launches
On July 2, 2024, NC Medicaid transitioned its members with intellectual and other developmental disabilities (I/DD) and traumatic brain injury (TBI), along with those with serious mental health or substance issues, to a Tailored Plan for their Medicaid Coverage. These plans provide comprehensive coverage for doctor visits, prescriptions, and behavioral health services. For people with I/DD, the Tailored Plans also manage specialized services such as Innovations, 1915(i) services, state funded services, in-lieu of services, and Tailored Care Management (TCM). These specialized services are not available in the Standard Plan.
To learn more about Tailored Plan, check out these free materials Toolkit Resources or contact the Medicaid Enrollment Broker at 1-833-870-5500.
FEDERAL
Addition of ‘Care Workers” in Standard Occupational Classification
The Federal Register recently published a call for feedback on suggested updates to the care worker classification system. The proposed updates aim to better classify and recognize care workers, including Direct Support Professionals working with people with IDD, reflecting the important role DSPs play in our lives. This is an important update for our advocacy efforts as we work to increase pay for DSPs. They want to hear your thoughts on how job categories should be updated to better describe and recognize care workers, including Direct Support Professionals (DSPs). The document seeks feedback on definitions, classification criteria, and potential impacts. Comments can be submitted until August 12, 2024. You can access the full document and details on how to submit your comments by visiting the Standard Occupational Classification (SOC)-Request for Comments webpage. Additionally, HR 2941, defines Direct Support Professionals (DSPs). DSPs provide vital support to individuals with disabilities, assisting with daily activities and promoting independence. Learn more about H.R. 2941 - Recognizing the Role of Direct Support Professionals Act.
Subminimum Wage Issue
Last fall, the U.S. Department of Labor began a comprehensive review of Section 14(c) of the Fair Labor Standards Act. This section allows employers to obtain special certificates from the Labor Department permitting them to pay workers with disabilities less than the minimum wage of $7.25 per hour. The review was to examine how 14(c) is currently being used and determine the future use of the rule. More than 2,000 people participated in a series of stakeholder engagement sessions held last fall as part of the review. It’s not yet clear what changes could be in store, but advocates have pushed to do away with the Section 14(c) program altogether. The Department of Labor is reviewing and considering input as they plan for next steps. It plans to issue a notice of proposed rulemaking related to Section 14(c) of the Fair Labor Standards Act by September.
Initiative Highlight: Community Success from the Ability Leadership Project
The Ability Leadership Project of North Carolina (ALP-NC) brings together individuals with lived experiences to develop advocacy skills within the intellectual or other developmental disabilities (I/DD) community. Administered by Community Bridges and funded by the North Carolina Council for Developmental Disabilities (NCCDD), ALP-NC is unique in offering policy-based advocacy leadership training where people with I/DD, parents, professionals, and other stakeholders train together.
But ALP-NC is more than a training program. While participants develop skills for self-advocacy, the program is a space to develop strong relationships among people passionate about disability rights and inclusion. Through a mix of large seminars, small group sessions, and self-paced learning modules, participants form a supportive community. As participant and Facilitator Amy Dickey noted, “You know these people and you can circle back to them.”
Participant Olivia Rose Scott reflected on her experience with ALP-NC as a space to explore what disability advocacy means to her, while recognizing that it varies for everyone. The sessions help each participant develop their unique advocacy story. ALP-NC Director Hannah Shumaker described ALP-NC as “a program that focuses on creating sustainable advocacy tools.” Recognizing the challenges of disability advocacy and the slow pace of systemic change, ALP-NC makes this workload more sustainable by finding “ways we can share the load.”
Common success stories from ALP-NC highlight the importance of connecting individuals to be advocates in their own communities. Participant Wilma Rivera found the program challenging but rewarding, as it helped her develop her voice and effect change in the Hispanic community.
Each participant brings a unique background to ALP-NC. Facilitator Gerald Parrish stated, “ALP gave me a sense of belonging and a platform to help me get myself seen and heard.” The program reassures participants that, despite their diverse reasons for advocating, they are not alone in their struggles. “You don’t have to fit into a specific box to be an advocate,” said Shumaker. Participants can discover the advocacy style that works for them. Scott added, “Everyone needs help at some point,” and ALP-NC provides the tools and connections to overcome life’s inevitable obstacles.
ALP creates a safe space for individuals to grow their voices, accommodating different learning and participation styles. Rivera admitted that speaking in large groups can be challenging, but the smaller learning teams help her build her voice to contribute to larger discussions. Olivia Navarro emphasized the importance of active participation. “If we’re not active, we can’t seek justice for ourselves,” said Navarro. ALP-NC helps participants harness their unique forms of activism for broader change.
“At the end of the day,” said Scott, “this advocacy is going to benefit everybody regardless of ability.” Advocacy can feel isolating, but Rivera now feels her own story is enough and recognizes the collective impact of everyone’s individual stories. Dickey, a longtime advocate, entered the program expecting to reinforce her beliefs but instead found significant personal growth.
Shumaker encourages people to apply if they’re ready for a change, describing ALP-NC as “disruptive to people’s preconceived ideas.”
“Just go for it,” said Navarro. “You don’t learn something if you don’t do it.”
Cameron Kempson, Director of Education at Community Bridges summarized the intent and impact of the ALP-NC initiative well. “We know that [telling stories] is a powerful tool for helping people connect with an issue. What we’ve experienced with ALP-NC Leaders is that while these personal narratives are key to centering the voice of disability, they are also compelling people to engage in advocacy. In effect, these stories become a call to action in the disability justice movement.”
For more information about the ALP-NC initiative:
- NCCDD initiative summary: Ability Leadership Project of NC
- ALP-NC website: Ability Leadership Program of North Carolina
August Self-Advocate Discussion Series: Learn about the Rossi Fund and Disability Voting Rights Week
Join us on August 21st from 1 to 2 PM to discuss two topics. First, we will talk about the NCCDD Jean Wolff-Rossi Fund for Participant Involvement and how you can use it to reimburse you for funds to attend conferences, events, and advisory councils. If you have used the Rossi Fund before, come share about your experience!
Our second topic will be about disability voting rights. As the big elections get closer, we will discuss protecting the rights of people with disabilities to participate fully in our democracy by preparing to recognize Disability Voting Rights Week which is held September 9 - 13, 2024.
Register today!
NCCDD's Self-Advocate Discussion Series is held on the third Wednesday of each month at 1 PM. The series aims to prepare, organize and mobilize North Carolina self-advocates for influencing social and systems change. The series is a perfect time to connect with others with common interests, develop impact strategies for telling personal stories, and become (or continue to be) part of the NCCDD community. The series is facilitated by Chris Hendricks, NCCDD Policy Education Coordinator and NCCDD self-advocate members. Learn more about the series. You can view video recordings of previous Self-Advocate Discussion Series webinars on our YouTube channel.
Hispanic Disability Outreach: Celebrating Disability Pride Month by Honoring the ADA and the Disability Community
July is Disability Pride Month, a time to celebrate the history, achievements, experiences, and struggles of the disability community. This month-long event commemorates the passing of the Americans with Disabilities Act (ADA) on July 26, 1990, a landmark law that prohibits discrimination against people with disabilities.
The ADA defines a person with a disability as someone who:
- Has a physical or mental impairment that substantially limits one or more major life activities,
- Has a history or record of such an impairment (e.g., cancer in remission), or
- Is perceived by others as having such an impairment (e.g., scars from a severe burn).
Major life activities include everyday actions and bodily functions, such as:
- Eating, sleeping, speaking, and breathing
- Walking, standing, lifting, and bending
- Thinking and concentrating
- Seeing and hearing
- Working, reading, learning, and communicating
- Circulation, reproduction, and individual organ functions
The ADA aims to eliminate discrimination against individuals with disabilities and provide broad coverage. It is crucial for people with disabilities and their families to be aware of their rights under the ADA, as many are unaware of the protections available to them in areas like employment, transportation, education, and entertainment.
The ADA is divided into five titles, each addressing different areas of public life:
- Title I: Employment - Prohibits employment discrimination and requires reasonable accommodations for qualified individuals.
- Title II: Public Services - Ensures equal access to services, programs, and activities provided by public entities.
- Title III: Public Accommodations - Requires private entities to make reasonable modifications for accessibility.
- Title IV: Telecommunications - Mandates relay services for individuals with hearing or speech disabilities.
- Title V: Miscellaneous Provisions - Covers various aspects, including the ADA’s relationship to other laws and its impact on insurance providers.
Let’s take this month to honor and support the disability community, recognizing the importance of the ADA in promoting equality and accessibility for all.
For more information about the ADA, visit ADA.gov.
En español: Celebrando el Mes del Orgullo de la Discapacidad: Honrando la ADA y la Comunidad con Discapacidad
Julio es el mes del Orgullo de la Discapacidad, un momento para celebrar la historia, los logros, las experiencias y las luchas de la comunidad con discapacidad. Durante este mes se conmemora la aprobación de la Ley de Estadounidenses con Discapacidades (ADA, por sus siglas en inglés) el 26 de julio de 1990, una ley histórica que prohíbe la discriminación contra las personas con discapacidades.
La ley ADA define a una persona con discapacidad como alguien que:
- Tiene una discapacidad física o mental que limita sustancialmente una o más actividades importantes de la vida,
- Tiene un historial o registro de tal discapacidad (por ejemplo, cáncer en remisión), o
- Es percibido por otros como teniendo tal discapacidad (por ejemplo, cicatrices de una quemadura severa).
Las actividades importantes de la vida incluyen acciones cotidianas y funciones corporales, tales como:
- Comer, dormir, hablar y respirar
- Caminar, estar de pie, levantar y doblar
- Pensar y concentrarse
- Ver y oír
- Trabajar, leer, aprender y comunicarse
- Circulación, reproducción y funciones de órganos individuales
- La ley ADA tiene como objetivo eliminar la discriminación contra las personas con discapacidades y proporcionar una cobertura amplia. Es crucial que las personas con discapacidades y sus familias estén al tanto de sus derechos bajo la ley ADA, ya que muchos desconocen las protecciones disponibles en áreas como el empleo, el transporte, la educación y el entretenimiento.
La ley ADA se divide en cinco títulos, cada uno abordando diferentes áreas de la vida pública:
- Título I: Empleo - Prohíbe la discriminación en el empleo y requiere adaptaciones razonables para individuos calificados.
- Título II: Servicios Públicos - Asegura el acceso igualitario a servicios, programas y actividades proporcionados por entidades públicas.
- Título III: Acomodaciones Públicas - Requiere que las entidades privadas hagan modificaciones razonables para la accesibilidad.
- Título IV: Telecomunicaciones - Exige servicios de retransmisión para personas con discapacidades auditivas o del habla.
- Título V: Disposiciones Misceláneas - Cubre varios aspectos, incluyendo la relación de la ADA con otras leyes y su impacto en los proveedores de seguros.
Tomemos este mes para honrar y apoyar a la comunidad con discapacidad, reconociendo la importancia de la ADA en la promoción de la igualdad y la accesibilidad para todos.
Para más información sobre la ADA, visite ADA.gov.
Save the date for Direct Support Professional (DSP) Recognition Week!
This year, Direct Support Professional (DSP) Recognition Week will be September 8-14, 2024. It’s a time set aside to pause, acknowledge, and highlight the dedicated DSP that is the heart and soul of supports for people with intellectual or other development disabilities (I/DD) to live independent lives in the community of their choice.
Plan Ahead to Celebrate
Individuals with I/DD, their families, and the organizations that employ DSPs celebrate the month in many ways: giving gift cards, having a special luncheon, writing a personalized letter of gratitude, and more. Do you have ideas on ways to show your appreciation to DSPs? Let us know! Email your suggestions to [email protected]. We will include suggestions - maybe even yours! - in our August newsletter.
Put Your Appreciation into Action: Comment on the addition of “Care Workers” in the Standard Occupational Classification
The Federal Register recently published a call for feedback on suggested updates to the care worker classification system. They want to hear your thoughts on how job categories should be updated to better describe and recognize care workers, including Direct Support Professionals (DSPs).
This proposal aims to better classify and recognize care workers, including Direct Support Professionals working with people with I/DD, reflecting the important role DSPs play in our lives. The document seeks feedback on definitions, classification criteria, and potential impacts. Comments can be submitted until August 12, 2024.
Key areas for comments include:
- Changes to existing job categories
- Suggestions for new job categories
- Improvements to classification criteria and descriptions
You can access the full document and details on how to submit your comments by visiting the Standard Occupational Classification (SOC)-Request for Comments webpage.
Additionally, HR 2941, defines Direct Support Professionals (DSPs). DSPs provide vital support to individuals with disabilities, assisting with daily activities and promoting independence. Learn more about the H.R. 2941 - Recognizing the Role of Direct Support Professionals Act.
