November 2024 Highlights and Hot Topics
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- Message from the Executive Director
- Public Policy Update (as of 11/22/24)
- Five North Carolinians Honored for Disability Advocacy and Leadership Across the State
- NCCDD's FY 2023-2024 Impact Report Now Available
- Hispanic Disability Outreach Update
- December Self-Advocate Discussion Series: Giving as a Self-Advocate
- Boletín en español
- Newsletter in Accessible Audio
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Message from the Executive Director
It’s the season of Thanksgiving. And Thanksgiving could not come at a better time. I need an attitude of gratitude.
Oscar the Grouch can make being grumpy seem fun and lovable. It’s not. At least, it's not for me.
I have been grumpy and grouchy lately with too much work to do. I have too many worries about Hurricane Helene, challenges those close to me are experiencing, the election, and upcoming deadlines. All of this is important, but so are friendships, family, rest, and joy.
I am going to work on changing my attitude to one of gratitude. Yes, that is a cheesy statement. But just because it is a Cheez-Whiz phrase, doesn’t mean it’s not exactly right and what many of us need right now.
Writing this article seemed like a chore. It’s at deadline. It’s dark outside. I found myself griping to my keyboard.
But, once I started focusing on all that I have to be thankful about, my mood improved. This article became something I wanted to put on paper and share.
I am grateful for the North Carolina intellectual and other developmental disability (I/DD) community and all the joy it brings into my life. My wife Laura hosts a monthly dinner with friends from Reality Ministries, which includes people with I/DD. Those gatherings of friends bring joy to me. I am going to Florida to be with family and to rest. I got to spend part of my day today with Bryan Dooley, our outgoing Council Chair, who has become a lifelong friend. This November, we gave awards to Senator Jim Burgin, Secretary Kody Kinsley, Jessica Aguilar, Pam Shipman, and Cheryl Powell. They each inspire me and show how much we can do together. In fact, we can move mountains like Kerri Eaker, our former Council Chair, showed us we can do. That is why we named our newest award in her honor. It gave me so much joy to be with her sister, her son, and her friends when we gave the new Kerri Eaker Mountain Mover Award to Secretary Kinsley and Senator Burgin.
As I write this, I feel the cold from outside seeping through the dark windows, but I feel warmth and joy. I have an attitude of gratitude. And it is because of our community. Thank you friends and colleagues!
Happy Thanksgiving!
Talley Wells, NCCDD Executive Director
Public Policy Update (as of 11/22/24)
Federal
Budget and Appropriations
As a reminder, on September 25, 2024, Congress passed a three-month long Continuing Resolution (CR) that extends government funding through December 20, 2024 (H.R. 9747). The CR includes an extension of funding for the Autism CARES Act of 2019, delaying its sunset until December 20, 2024 and teeing up a new vote for the Autism CARES Act of 2024.
Members of Congress were in their home states during October and through the election. Members returned to their offices on Capitol Hill on November 12, 2024 with only a few weeks left to reach a final agreement on fiscal year (FY) 2025 spending before the current continuing resolution expires on December 20, 2024. Before the election, it was thought that Congress might pass another CR that would last until February or March 2025. However, with Republicans now poised to control both chambers of Congress as well as the White House in 2025, some are pushing to finalize an FY25 spending bill before the end of the year.
Appropriations leaders, including Senate Committee on Appropriations Chair Patty Murray (D-WA) and Vice Chair Susan Collins (R-ME) and House of Representatives Committee on Appropriations Chair Tom Cole (R-OK) and Ranking Member Rosa DeLauro (D-CT), have voiced support for finalizing the FY 2025 spending bills before December 20, 2024 but will need to reach a topline spending agreement before Congress adjourns for the Thanksgiving break.
Before the CR, there was some initial work on budget. The House bill contained massive overall cuts compared to last year, but level-funding for many programs in the Administration for Community Living including the University Centers for Excellence in Developmental Disabilities (UCEDD), the Health Resources and Services Administration (HRSA), and the Leadership Education in Neurodevelopmental Disabilities (LEND) Program.
There is opportunity after Thanksgiving to educate your Senators and Representatives about the need to increase funding for Home and Community Based Services (HCBS) for people with I/DD to address waiver waitlists and direct support professional (DSP) wages.
Care for Military Kids Act
On September 23, 2024, the U.S. House of Representatives voted unanimously to pass the Care for Military Kids Act (H.R. 8108), which would ensure children in military families receiving HCBS can continue receiving coverage when their families move throughout the country due to a parent’s military service. The legislation is sponsored by U.S. Representatives Jen Kiggans (VA-R-2) and Marcy Kaptur (D-OH-9). This bill will need to be passed by the Senate.
Think Differently Database Act
On September 17, 2024, the U.S. House of Representatives Committee on Energy and Commerce passed the Think Differently Database Act (H.R. 670). The bipartisan legislation, sponsored by Representatives Marc Molinaro (R-NY-19) and Mikie Sherrill (D-NJ-11) in the House, and Senators Eric Schmitt (R-MO) and Jon Ossoff (D-GA) in the Senate, would create a comprehensive, national website database of support services and resources for people with disabilities in every state. This will be going to the House for a vote.
Census Hits Pause On Revising Disability Questions
The U.S. Census Bureau will not make any changes to the way it counts the number of Americans with disabilities for at least two years following concerns that planned updates could lead to a severe undercount. The agency proposed sweeping changes to its disability questions last year. Census officials wanted to reorder and reword the series of six disability questions in the American Community Survey while adding a new question about psychosocial, cognitive disabilities, and problems with speech. In addition, people would be asked to rate the level of difficulty they have with various functions rather than simply responding with “yes” or “no.” Advocates pointed out that in order to be counted as having a disability under the proposal, a person would need to respond to at least one question with “a lot of difficulty” or “cannot do at all.” Advocates warned the change could lead to a 40% drop in the number of people considered to have a disability.
In response to the proposal, the Census Bureau received over 12,000 comments, many of which were critical, and paused the plans. After meeting with stakeholders in the disability community, the Census Bureau is extending that pause.
LaTonya Reeves Freedom Act (S.1193 and HR 2708)
The Latonya Reeves Freedom Act, named to honor a Coloradan who fled Tennessee to gain the freedom to live in her own home, would protect and expand the civil right of Americans with disabilities to receive long-term services and supports (LTSS) in the setting of their choice. The bill would codify the 1999 U.S. Supreme Court ruling in Olmstead v. L.C., assuring people with disabilities have the qualified right to be treated in a setting of their choice. Bills have been introduced in both the Senate and the House and have bi-partisan support, but have not moved forward during this session. In an effort to move the bill, Rep. Steve Cohen (D-TN) filed a Discharge Motion on November 13, 2024. This motion was introduced in the House on November 17, 2024. This motion would move the proposed bill to the floor of the House without going through a committee.
State
Legislative
The short session began April 24, 2024 and ended in June 2024; however, the legislature continued to meet monthly with a plan to officially adjourn the Regular Session on December 13, 2024.
In October, they met twice to address Hurricane Helene. On October 9, 2024, the Disaster Recovery Act of 2024 was passed. It allocated $273 million dollars with the largest portion directed for state and local match for federal disaster assistance.
On October 24, 2024, the Disaster Recovery Act of 2024 – part 2 was passed. It was a $604 million package which included:
- $25,000,000 to the Department of Health and Human Services (DHHS), Division of Central Management and Support, for mental health crisis supports and for support for individuals with intellectual and other developmental disabilities (I/DD). Funds used for mental health must be used for crisis services.
- $65 million toward public schools.
- $12 million to support local health departments.
- $10 million for childcare centers and family childcare homes.
In addition, it included $2 billion to the state’s Opportunity Scholarship school voucher program over the next decade. The bill was later vetoed by the Governor due to the private school vouchers.
The legislature reconvened the week of November 19, 2024 and the House of Representatives voted to override Cooper’s veto by a 72-44 margin, with three Democrats joining all Republicans present in favor. On Wednesday, the state Senate followed suit, overcoming the veto with a 30-19 vote.
A bill titled Disaster Relief-3/Budget/Various Law Changes was passed during the reconvening of the legislature. While it is described as the third round of relief for western North Carolina, it provides just a fraction of the spending allocated in the previous packages. It also contains some controversial changes to power within the executive branch and some restrictions on the governor’s and attorney general’s offices. It also makes changes to absentee voting, ballot counting, the highway patrol and the judiciary. If vetoed by the Governor, it would force the need for another override vote.
DMH/DD/SUS Strategic Plan
The Strategic Plan is available on the state website. The primary goals include:
- Increase access to care across the state
- Improve access to quality IDD and TBI services
- Prevent substance misuse and overdose
- Build the workforce
- Strengthen the crisis system
- Expand service for individuals in the justice system
- Amplify recovery and community-based services
The plan, which has been presented to the Council members, includes more detail under each goal, as well as strategies and measures. Here is the link to the plan: DMH/DD/SUS Strategic Plan for 2024-2029.
Five North Carolinians Honored for Disability Advocacy and Leadership Across the State
Five North Carolina leaders in disability advocacy were honored at the 2024 Advocacy and Leadership Awards presentation at the November meeting of the North Carolina Council on Developmental Disabilities (NCCDD) in Cary, NC. The awards celebrate advocates who have advanced opportunities and access for people with intellectual and other developmental disabilities (I/DD) in North Carolina.
The four prestigious awards include the Kerri Eaker Mountain Mover Award, North Carolina Leadership Achievement Award, the Jack B. Hefner Memorial Award and the Helen C. “Holly” Riddle Distinguished Service Award. The awards honor their namesakes and those who continue to carry out important advocacy and community work to enhance the lives and opportunities for people with intellectual and other developmental disabilities (I/DD).
In a press release, Talley Wells, Executive Director of NCCDD, said, “We celebrate the individuals whose steadfast advocacy transformed lives and brought communities together across North Carolina. Our award recipients are committed to supporting individuals in navigating the complex care and service systems in our state, while advocating for essential resources, information, and empowerment. They are creating a future where individuals with I/DD have a voice and the support to thrive in their communities.”
Kerri Eaker Mountain Mover Award: Sen. Jim Burgin (R-District 12) and DHHS Secretary Kody Kinsley
The Kerri Eaker Mountain Mover Award, a new award from NCCDD, honors individuals whose unwavering commitment has driven transformative systems change for North Carolina’s I/DD community. This new award celebrates the legacy of Kerri Eaker, a parent advocate from Western North Carolina and former Council Chair. Inspired by her son Dakota, Eaker was devoted to guiding families through the complex maze of disability services, healthcare, and support networks.
This year’s honorees include Sen. Jim Burgin (R - District 12) and Secretary Kody Kinsley of the North Carolina Department of Health and Human Services (DHHS). In their tenure, they have worked alongside the I/DD community to expand access to disability services.
From advocating for Medicaid expansion to securing nearly $1 billion in behavioral health funding, they opened doors to essential resources statewide. Through town halls across North Carolina, they listened to families firsthand and forged connections with the I/DD community to create improvements in support and care. Their work reflects Kerri Eaker’s legacy of working together and advocating for inclusive, equitable care for all.
North Carolina Leadership Achievement Award: Cheryl Powell
The North Carolina Leadership Achievement Award recognizes an outstanding North Carolina self-advocate whose work has improved the quality of life for people with I/DD. Cheryl Powell, an advocate with cerebral palsy, embodies this spirit through her leadership with the Lived Experience Network Speaks (LENS) and the Leadership Alliance for Neurodevelopmental Disabilities (LAND) organizations.
With a bachelor’s degree in social work, Powell brings both expertise and empathy to her advocacy, empowering others through her insights and dedication to systems change. Powell, who is a former NCCDD Council Member and Vice Chair, has demonstrated an unwavering commitment to the I/DD community making her a leading self advocate statewide.
Jack B. Hefner Memorial Award: Jessica Aguilar
The Jack B. Hefner Memorial Award honors family members or volunteers advocating for and building a better North Carolina for people with I/DD. Jessica Aguilar, originally from El Salvador, is a mother to twin boys with autism.
She channeled her lived experience into a mission for inclusivity and accessible information for Spanish-speaking families across the state. As a member of the LAND Advisory Council, and co-founder of Poder y Esperanza and the NC Child’s Parent Advisory Council, Aguilar guides state leaders in supporting diverse communities by ensuring families receive clear, timely information in their native language. Aguilar strengthened connections between English and Spanish-speaking communities to create better family engagement and broaden inclusion throughout North Carolina.
Helen C. "Holly" Riddle Distinguished Service Award: Pam Shipman
The Helen C. "Holly" Riddle Distinguished Service Award recognizes professionals who have made lasting contributions toward improving opportunities and quality of life for people with I/DD in North Carolina. Pam Shipman’s commitment to managed care has profoundly shaped North Carolina’s disability services landscape. Her advocacy and expertise have played a key role in the General Assembly’s development of the public Local Management Entity/Managed Care Organizations (LME/MCO) system, now recognized as a model for integrated managed care.
Shipman consistently leveraged her expertise to address critical issues, from provider sustainability to data standardization to Direct Support Professional (DSP) initiatives while empowering families with essential tools for advocacy.
Watch a video presenation of the awards recipients:
About the awards: The Advocacy and Leadership Awards, hosted by the North Carolina Council on Developmental Disabilities (NCCDD), honor the significant contributions made by advocates who are actively working to change attitudes and support greater choices and build a more inclusive North Carolina for people with intellectual and other developmental disabilities (I/DD). Each year in late Spring, nominations are accepted for each award. For more information: https://nccdd.org/the-council/advocacy-and-leadership-awards
NCCDD's FY 2023-2024 Impact Report Now Available
NCCDD released its 2024 Impact Report, which highlights its progress in creating statewide change for better supports and services for North Carolinians with I/DD. More details are available in NCCDD’s recent press release.
The past year’s focus was on educating and informing the public and legislators on the issues faced by people with I/DD, with an emphasis on addressing the Innovations Waiver waitlist and the Direct Support Professional (DSP) workforce shortage.
NCCDD coordinated two events where individuals with I/DD, family members, and advocates could share their stories with legislators to drive systemic change. A Developmental Disabilities Town Hall meeting was held in Charlotte. Meet The Need North Carolina, an initiative of NCCDD, held a listening session for the I/DD Legislative Caucus at the NC State House in Raleigh.
Council-funded initiatives showed substantial impact in its three Five-Year State Plan goals: Financial Asset Development, Community Living, and Advocacy Development for people with I/DD. Initiatives worked to increase Competitive Integrated Employment (CIE) and Inclusive Post-Secondary Education (IPSE) expansion at Historically Black Colleges and Universities (HBCUs). The Council continued its work around the new Guardianship Rights Law, and mini-grants supported efforts in transition planning, health and wellness programs, and accessibility. Initiatives also focused on advocacy leadership through training, peer mentoring, and networking programs.
Additionally, NCCDD expanded support for the Hispanic I/DD community by developing Spanish-language resources and deepening community engagement.
For more information on NCCDD’s impact across the I/DD community, the 2024 Impact Report is available online in both English and Spanish.
Hispanic Disability Outreach Update
Hispanic Community Leader Receives Jack B. Hefner Memorial Award
The North Carolina Council on Developmental Disabilities (NCCDD) awarded the prestigious Jack B. Hefner Memorial Award to Jessica Aguilar, a prominent advocate for the Latinx community with disabilities. She was honored for her tireless commitment and transformative impact. This award honors family members or volunteers who dedicate their lives to building a better North Carolina for people with intellectual or other developmental disabilities (I/DD).
Aguilar, originally from El Salvador and mother to twin boys with autism, was recognized for her unwavering dedication and her transformative influence on the community.
Through her work with Grupo Poder y Esperanza, Jessica has led essential initiatives to support Hispanic families, particularly through her involvement in the Health Consumers Advisory Committee and other key organizations. Her example has shown that overcoming language and cultural barriers is possible, fostering more inclusive and accessible spaces.
The award was presented by Marjorie Seralles-Russell, NCCDD Vice Co-Chair, and Irlanda Ruiz, NCCDD's Hispanic Disability Advocate.
This recognition not only celebrates her work, but also the power of the Latino community to build a more equitable future for all.
Congratulations, Jessica Aguilar! Thank you for your inspiration and leadership!
Líder Comunitaria Hispana recibe el Premio Jack B. Hefner Memorial Award
El Consejo de Discapacidad en el Desarrollo de Carolina del Norte (NCCDD) otorgó, el prestigioso Premio Jack B. Hefner Memorial Award a Jessica Aguilar, una destacada defensora de la comunidad latina con discapacidades. Este galardón honra a familiares o voluntarios que dedican su vida a construir un mejor Carolina del Norte para las personas con discapacidades intelectuales y del desarrollo (I/DD).
Jessica Aguilar, originaria de El Salvador y madre de gemelos con autismo, ha sido reconocida por su incansable compromiso y su impacto transformador en la comunidad.
A través de su trabajo con Grupo Poder y Esperanza, Jessica ha liderado iniciativas fundamentales para apoyar a familias hispanas, destacando especialmente en su participación en el Comité Consultivo de Consumidores de Salud y otras organizaciones clave. Con su ejemplo, ha demostrado que superar barreras lingüísticas y culturales es posible, creando espacios más inclusivos y accesibles.
El premio fue entregado por Marjorie Seralles-Russell, Co-vicepresidenta del NCCDD e Irlanda Ruiz, Defensora Hispana de la Discapacidad del NCCDD.
Este reconocimiento no solo celebra su labor, sino también el poder de la comunidad latina para construir un futuro más equitativo para todos.
¡Felicidades, Jessica Aguilar! ¡Gracias por tu inspiración y liderazgo!
December Self-Advocate Discussion Series: Giving as a Self-Advocate
In November, NCCDD’s Self-Advocate Discussion Series focused on “Giving as a Self-Advocate.” People from around the state shared happy and inspiring stories about what they were thankful for in their lives.
This discussion will continue in December when we talk about the impact of giving. What does it mean to make an impact? Does your impact make a difference? And how can you give back to the I/DD community? Join us on December 18th from 1 to 2 PM to share your thoughts and experiences.
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.
Aspectos Distacados Y Temas De Interes (Coming soon!)
Newsletter in Accessible Audio
Coming soon!