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March 2024 Highlights and Hot Topics

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Message from the Executive Director

Talley Wells 2020Talley Wells
NCCDD Executive Director
March is Developmental Disabilities Awareness Month (#DDAM2024). This #DDAM2024 has reminded me of all the gifts, stories, and joys that exist in our community. 

North Carolina’s waiting list, workforce shortage, and policy changes have led many of us to focus on unmet needs and challenges. We need to share those stories as part of our advocacy.  But #DDAM2024 is a great time to flip the script and focus on the talents and people who make up the intellectual and other developmental disability (I/DD) community. 

A great place to start in North Carolina is The Binnacle, which is an online magazine led by two of our Council Members, Aldea LaParr and Nessie Siler. If you haven’t seen it, you are missing out. The Binnacle describes itself as “a lifestyle and resource newsletter where disability is centered as diversity. Here the challenges that come with living fully as a person with a disability are embraced with gusto, joy, and humor. Embark with us! In its pages, you find stories, essays, and amazing pictures of North Carolinians with disabilities." 

The Durham Performing Arts Center is the place where Broadway musicals like Hamilton and Lion King are performed. It is also the place where every year there is a talent show with people of all abilities

I love great journalism so it was fun for me to recently find that our Council Chair had a whole section of the HuffPost with a full series of articles I didn’t know about.   

As part of this month’s celebration, the North Carolina Council on Developmental Disabilities is seeking stories from our community. The campaign is called My Story Matters. You can share your story here. We are always looking for advocacy stories because an important part of our work is advocating for better systems. But it is just as important to tell our every-day stories, our joyful stories, our stories overcoming challenges, and our stories of being together.   

Happy Developmental Disabilities Awareness Month! Let’s celebrate all year long!

Celebrating Developmental Disabilities Awareness Month

DD Awareness Month 2024

Each March, the National Association of Councils on Developmental Disabilities (NACDD), and its DD Council partners, including the North Carolina Council on Developmental Disabilities (NCCDD), work together to create an outreach campaign that highlights the many ways in which people with and without intellectual or other developmental disabilities (I/DD) come together to form strong, diverse communities. 

The campaign seeks to raise awareness about the inclusion of people with I/DD in all facets of community life, as well as awareness of the barriers that people with I/DD still sometimes face in connecting to the communities in which they live.

The theme for Developmental Disabilities Awareness Month (DDAM) for this year is "A World of Opportunities." It's a time to celebrate people and work together to remove obstacles. The goal is to build a community that’s committed to creating a world where everyone can do well and succeed. Join us in making a world where all kinds of people have the chance to thrive!

Are you on Facebook? Instagram? Other social media platforms? If so, check out what others have posted about DD Awareness Month by searching for the following hashtags: #DDAwareness2024, #DDAM2024, #AWorldofOpportunities, #NewOpportunities

The following events and announcements were just some of the activities NCCDD was involved with during DD Awareness Month. 

North Carolina Governor Cooper Issues DDAM Proclamation

On February 28, 2024, Governor Roy Cooper issued a proclamation declaring March as Developmental Disabilities Awareness Month in North Carolina. The proclamation, in part, states that almost 200,000 people with intellectual and other developmental disabilities (I/DD) live across all 100 counties in North Carolina; and the responsibility of all North Carolinians to recognize and acknowledge that it is not disability, but unjust societal barriers and attitudes that can keep individuals from realizing their full potential at school, work, home, and/or in their communities. 

Read the entire Governor's Proclamation: 

DHHS and NCCDD Issue Joint Press Release Recognizing DD Awareness Month

On March 11, 2024, The North Carolina Department of Health and Human Services recently issued a press release in recognition of Developmental Disabilities (DD) Awareness Month. The press release stated that "NCDHHS and the North Carolina Council on Developmental Disabilities are dedicated to coming together to address societal barriers so individuals can reach their full potential and be fully included in their communities." 

Read the full press release, including comments from NCCDD Executive Director Talley Wells.

"Unmet" Film Continues to Educate and Inform

“Unmet: North Carolina’s Two Developmental Disability Crises” is a 25-minute film commissioned by the North Carolina Council on Developmental Disabilities. It shows the real-life situations of individuals with intellectual or other developmental disabilities (I/DD) and what it looks like when their needs are unmet. The film debuted in 2023 with several screenings throughout North Carolina. During DD Awareness Month, two exciting announcements were shared. One was an in-person viewing of the film in Charlotte. The viewing was in Spanish in an effort to reach out to NC's Spanish population. In addition, the film is now available to be reserved for Watch Parties. Read more in the article below: Film Screening Welcomes Latino Community

In addition, DHHS hosted a screening of the "Unmet" film on Wednesday, March 13, 2024 at its monthly Lunch & Learn. You can watch the the recording here: https://www.youtube.com/watch?v=CNwTHfAdUUw

NCCDD launches its My Story Matters Campaign during DDAM

As a part of DD Awareness Month, NCCDD announced its new campaign, My Story Matters, on March 1, 2024. The campaign aims to learn about North Carolinians with I/DD across the state and the issues that are important to them. See the My Story Matters article in this newsletter for more information on how you can be a part of this campaign by sharing your story. Learn more in the article below: Be a Part of the My Story Matters Campaign.

Film Screening Welcomes Latino Community

Spanish Unmet Movie Over 40 community members attended the "Unmet: North Carolina’s Disability Crisis" screening in Charlotte, NC on March 23, 2024 for a screening hosted by Alliance Health and the North Carolina Council on Developmental Disabilities. The event, geared towards the Latino community, took place at Friendship Missionary Baptist Church.

Currently, many individuals - and their families - who wait (often for over a decade) for a Medicaid Waiver in North Carolina, struggle and are at risk with minimal support. North Carolina has a Medicaid Innovations Waiver waitlist which is 17,000 and growing. Overall, it is difficult for individuals and their families to find and understand information about I/DD services and navigation, with a further disparity in access to I/DD services for minority populations.

The event featured a screening of Unmet, which was dubbed Spanish, and then, followed by a Community Conversation giving an opportunity for the Latino community to share their concerns around I/DD issues that matter to them and to hear from leaders from Alliance and NCCDD. The event also featured an opportunity for information about community resources available from several community agencies and nonprofits that support the Latino community in Charlotte and surrounding areas.

Family members attended to find out information about resources available for their family members with I/DD. One family attended to learn more about education resources for their child, while a sibling advocate attended to learn about what is available for her adult brother who is diagnosed with autism. 

Unmet, commissioned by NCCDD, is a 25-minute film showing the real-life situations of individuals with intellectual or other developmental disabilities (I/DD) and what life is like when their needs are unmet.

The film focuses on how people with developmental disabilities typically benefit from various home and community-based services or Medicaid Waiver services that allow them to access healthcare and live successfully in their community of choice as defined by Olmstead.

Public Policy Update (as of March 15, 2024)



The short session is scheduled to begin April 24, 2024. The short session is designed primarily for review and adjustments to the two-year budget that was approved last session. With the elections coming up, the expectation is that this session will be quick. One critical area of focus for advocates is to increase the funding allocated last session for direct support professional (DSP) wage increases. As a reminder, $60 million was included in the budget which fell short of the $90 million needed to achieve the targeted increases. Continuing education and advocacy around the waitlist is also a critical topic.  

While the session has not yet started, the Legislative Oversight Committees (LOC) are meeting. Both LOC on Health and Humans Services and the LOC on Medicaid met in March and plan to meet again in April.   

Tailored Plans   

Tailored Plans are scheduled to roll out July 1, 2024.  The Department of Health and Human Services (DHHS) is continuing readiness reviews of the four LME-MCOs who will be operating the Tailored Plan. System testing, reviewing operation of call centers, and evaluating the provider network are all part of the reviews. Based on the reviews, DHHS will make a recommendation in early April as to whether the Tailored Plans should begin in July as scheduled or be delayed.  



The fourth continuing resolution (CR) for FY 2024 (October 2023 - September 2024) allowed the government to continue operations under the last fiscal year budget amounts. The first set of appropriations bills that were scheduled to expire under the CR have now been funded through September. On Friday, March 8, the Senate cleared, by a 75-22 vote, full-year appropriations for fiscal year 2024 under a “minibus” for six appropriations bills: Agriculture, Commerce-Justice-Science, Energy-Water, Interior-Environment, Military Construction-VA, and Transportation-HUD. The House had passed the minibus on March 6. The President signed the measure.  

The second set of appropriations bills are scheduled to expire on Friday, March 22: Defense, Financial Services-General Government, Homeland Security, Labor-HHS-Education, Legislative Branch, and State-Foreign Operations. Under the agreement, leaders plan to complete full-year appropriations for the remaining bills by the end of the current CR. Many of the funds that support people with intellectual or other developmental disabilities (I/DD) are in this second set of bills. Getting this second package of appropriations through Congress is expected to be more contentious. I/DD advocates are hopeful that 2023 funding levels can be maintained, but there will be pressure for budget reductions in this second set.  Once this is approved, Congress can move on to focus on next year’s appropriations bills.

Update as of March 23, 2024: On Saturday March 23, President Biden signed a $1.2 trillion government funding bill which prevented a government shutdown. This came after the House passed legislation on Friday, and the bill passed the Senate early Saturday morning. 

The legislation provides $1.2 trillion in funding for the departments of Defense, Homeland Security (DHS), Labor, Health and Human Services, State, as well as general government, financial services and foreign operations.The bills avoided the drastic cuts that were a concern for disability advocates. 

Looking ahead – President’s budget  

Biden used his State of the Union address in March to urge Congress to add funding for Medicaid home and community-based services. The president followed up on Monday by including $150 billion over 10 years “to strengthen and expand Medicaid home and community-based services” in his budget request for the 2025 fiscal year, which begins in October.  

Beyond requesting more investment in home and community-based services, Biden’s budget includes a $200 million increase in spending on special education services; $10 million to train special educators and early intervention providers; and funding to improve customer service at the Social Security Administration.  

The budget request is largely viewed as a wish list highlighting the president’s priorities. It will now be up to Congress to determine what will ultimately be included in the federal budget for the upcoming year.   

Transformation to Competitive Integrated Employment Act 

This a bill that has support from both parties in the Senate and the House. The bill directs the Department of Labor to award grants to states and certain eligible entities to assist them in transforming their business and program models to support individuals with disabilities. It also phases out paying workers with disabilities subminimum wages.   

The National Association of Councils on Developmental Disabilities (NACDD) is going to ask all DD Councils at its Disability Policy Seminar to focus on transition to competitive and integrated employment during their visits to Capitol Hill.     

Rule Making to Ensure People who Use Wheelchairs can Travel Safely on Airplanes   

The U.S. Department of Transportation (DOT) announced proposed rules that would “ensure airline passengers who use wheelchairs can travel safely and with dignity.” The new rules would set standards for prompt, safe, and dignified assistance, and require training for airline employees who assist passengers and handle wheelchairs. It would also define steps that airlines must take to protect passengers when a wheelchair is damaged. DOT is accepting comments on the proposed rule until April 28, 2024. 

April Self-Advocate Discussion Series: Voting Rights

Join us on Wednesday, April 17 at 1:00 p.m. for our latest Self-Advocate Discussion Series webinar on voting rights and creating a voting plan. We will hear from experts that will share experiences, insight, resources and advocacy tips.

As always, we'll have time to hear from YOU! What would be the best situation for you? What do we need more of when it comes to preparing for voting how we want to and for whom we want?

Please join us to talk about voting for and by people with I/DD in North Carolina! Bring your questions and your stories about voting to share in our discussion! Register today!

Register today!

NCCDD's Self-Advocate Discussion Series is held on the third Wednesday of each month at 1 p.m. 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 here.You can view video recordings of previous Self-Advocate Discussion Series webinars on our YouTube channel.

Be a Part of the My Story Matters Campaign!

My Story Matters En español: Descubra cómo puede ser parte de la campaña My Story Matters

My Story Matters is a new campaign, launched March 1, 2024 during Developmental Disabilities (DD) Awareness Month, by NCCDD to learn about North Carolinians with intellectual and other developmental disabilities (I/DD) across the state and the issues that are important to them. 

Why are we doing this? Because your story is important! Your story is also a form of advocacy. Sharing your story with us can help us advocate together with key decision makers, lawmakers, and people who can help us make life better for people with I/DD like you in North Carolina.

To submit your story:

  • Complete an online form with information about yourself. 
  • Send us a photo of yourself. It can be a selfie, a photo with your family or friends (let us know where you are in the photo!), or even doing something fun in your community. 
  • If you agree to allow NCCDD to share your story online, you will have an option to give us permission. 
  • Once we receive the information, the NCCDD team will take the time to read and understand your story. 
  • If you said we can share it online on our website and social media, we will let you know via email when you will be featured! 

We have already received many stories. Check out some of the stories featured on our website at Featured Stories from the My Story Matters Campaign

En español: Descubra cómo puede ser parte de la campaña My Story Matters

Hispanic Disability Outreach: Enhancing Inclusivity - What is a Developmental Disability?

En nuestro esfuerzo continuo por educar y proporcionar recursos a nuestra comunidad de discapacidades intelectuales y del desarrollo (I/DD), por sus siglas en inglés), es importante explicar quién cualifica como una persona con discapacidad en el desarrollo.    

El Departamento de Salud y Servicios Humanos de Carolina del Norte (NCDHHS), por sus siglas en inglés) supervisa y financia los servicios a largo plazo para personas con discapacidades intelectuales y del desarrollo. El Departamento utiliza una definición de discapacidad del desarrollo similar a la que se utiliza en todo el país. Define una discapacidad del desarrollo como una persona que tiene una discapacidad crónica que comenzó al nacer o durante la infancia  antes de cumplir los 22 años y que tiene un impedimento físico o mental o una combinación de ambos que causa un funcionamiento limitado en áreas como:    

  • Cuidado personal  
  • Comunicación  
  • Aprendizaje  
  • Movilidad  
  • Toma de decisiones  
  • Vida Independiente    

Los servicios supervisados por el NCDHHS pueden apoyar a las personas con I/DD en las áreas mencionadas. En artículos futuros, continuaremos discutiendo los diversos servicios disponibles para las personas con discapacidades del desarrollo.    

Para obtener más información, puede visitar la página web de I/DD del DHHS de Carolina del Norte en: https://www.ncdhhs.gov/divisions/mental-health-developmental-disabilities-and-substance-use-services/intellectual-and-developmental-disabilities    

Además, el Consejo de Discapacidades del Desarrollo de Carolina del Norte tiene una defensora hispana de las discapacidades, Irlanda Ruiz. Puede comunicarse con ella en [email protected] o llamar al 984-920-8215 para obtener ayuda en español.

In English:

In our ongoing effort to educate and provide resources to our intellectual and developmental disabilities (I/DD) community, it is important to discuss who qualifies as having an I/DD. 

The North Carolina Department of Health and Human Services (NCDHHS) oversees and funds long-term services for individuals with I/DD. The Department uses a definition similar to what is used across the country. It defines “developmental disability” as when a person has a chronic disability that began at birth or during childhood before the age of 22 and who has a physical or mental impairment or a combination of both that causes limited functioning in areas such as: 

  • Self-Care 
  • Communication 
  • Learning 
  • Mobility  
  • Decision-Making  
  • Independent Living 

Services overseen by NCDHHS can support individuals with I/DD in the above areas. In future articles, we will continue to discuss the various services available to people with I/DD. 

For more information, you can visit the NCDHHS I/DD webpage

Also, NCCDD has a dedicated Hispanic Disability Advocate, Irlanda Ruiz. You can reach her at [email protected] or call 984-920-8215 for assistance in Spanish. 

Disability Voting Rights and Resources

voteThroughout this year, NCCDD will share information for each of us to get ready to VOTE! Each month, you can learn something to prepare for the election in November.

This month, we have a Voting Guide sent to us from AAPD (The American Association of People with Disabilities). AAPD “works to increase the political and economic power of people with disabilities. As a national disability-led and cross-disability rights organization, AAPD advocates for full civil rights for over 60 million Americans with disabilities. We do this by promoting equal opportunity, economic power, independent living, and political participation.”

We are pleased that we can share the Voting Guide with the NC I/DD community to help us all get ready for November. Follow along and download the the Voting Guide. You may want to print a copy and keep it with you as we learn together and get ourselves ready.

En Español - marzo 2024

HHT - Marzo 2024


Audio - Highlights and Hot Topics - March 2024



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North Carolina Council on Developmental Disabilities

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This project was supported, in part by grant number 2001NCSCDD-02, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.

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