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January 2024 Highlights and Hot Topics

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Letter from Systems Change Manager, Philip Woodward

December was a very active month for NCCDD. Our staff worked on and submitted our Annual Program Performance Report to the federal government. We helped host a Competitive Integrated Employment (CIE) Summit as part of the i2i Center for Integrative Health Conference in Winston-Salem. Also, Executive Director Talley Wells and I traveled to Nashville, Tennessee to attend the National Association for the Dually Diagnosed (NADD) Conference, where we presented about our Justice: Release, Reentry and Reintegration initiative.Photo of Philip WoodwardPhilip Woodward
NCCDD Systems Change Manager 

Having the opportunity to present nationally at a conference attended by more than 400 professionals working in the field of providing services and support to people with intellectual and other developmental disabilities (I/DD) and mental health disabilities was an exceptional opportunity. The initiative assisted 234 individuals with I/DD in developing an Individualized Reentry Plan for returning to society after incarceration in a state prison and secured two years of additional funding from the North Carolina Department of Health and Human Services (DHHS). The initiative has garnered interest from other states that may want to establish a similar initiative. North Carolina had something to offer to the rest of the country.

Talley and Philip likewise had many opportunities to learn more about best practices in supporting people dually diagnosed with I/DD and mental health disabilities. We learned about concepts such as diagnostic overshadowing and how many people with I/DD are simply diagnosed with a condition and then given medication to treat it, which often leads to overmedication. We learned how a high percentage of children with disabilities experience two or more stressful life events and the resulting importance of trauma-informed care. We heard closing keynote speaker Lou Radja from Oregon and the Democratic Republic of the Congo talk about the South African word umbutu, which can translate to mean “humanity” and how we are all interdependent: “If you want to win, they have to win.”

People with I/DD faced many challenges and many barriers to community living in 2023. They continued to experience Direct Support Professional (DSP) staff shortages, continued to have unmet needs and continued to wait for confusing information about newly available services such as Medicaid Expansion and 1915(i). But people with I/DD also demonstrated their resilience and made progress in other areas. They obtained effective peer mentoring services. They demanded improvements when new transportation systems were not working. Their advocacy helped to secure $60 million in funding for Innovations Waiver DSP salaries. They were released from prison, found a home in the community and obtained employment.

Here we are in January 2024 with new beginnings and fresh opportunities ahead to craft 2024 into a year of continued progress where people with I/DD can increase their financial assets, live in a community of their choice and continue to advocate for what is important to them. Thank you for joining us on this journey.

Public Policy Update (as of January 22, 2024)



The short session will begin on April 24, 2024, and is scheduled to run through July 31, 2024. The legislature also scheduled non-voting sessions (February 14-15, March 13-14, and April 10-11) to address appointments, vetoes, and other matters. As a reminder, the short session is a time to review and adjust the state’s two-year budget that was adopted last year. So, lawmakers may only consider new legislation that impacts the budget or bills that passed during the long session. It is expected that the legislators will likely avoid highly controversial issues and bills since it is an election year.

The short session is an opportunity to continue to educate and advocate around the need for more Innovations Waiver slots and the additional funds needed to increase Direct Support Professional (DSP) rates to at least $18 an hour.

Appendix K Flexibilities

The Centers for Medicare and Medicaid Services (CMS) recently approved North Carolina Medicaid to continue certain Appendix K flexibilities in the 1915 (c) Innovations Waiver and Traumatic Brain Injury (TBI) Waiver amendment, effective March 1, 2024. CMS allowed states to use Appendix K during the public health emergency related to COVID. Some of the flexibilities will continue and others will end February 29, 2024.

Some of the on-going flexibilities include:

  • Increase the Innovations waiver cap from $135,000 to $184,000 per waiver year.
  • Allow parents of minor children receiving Community Living and Support to provide this service to their child who has been indicated as having extraordinary support needs up to 40 hours/week.
  • Allow Supported Living to be provided by relatives.
  • Allow relatives as providers for adult waiver members to provide above 56 hours/week, not exceeding 84 hours/week of Community Living and Supports. 

NC Medicaid will work with the LME-MCOs to support members in transitioning from the Appendix K flexibilities that will be discontinued in the Innovations and TBI Waiver amendments by March 1, 2024. 

For more information on flexibilities approved for the Innovations and TBI waivers, please see the NC Medicaid Innovations Waiver webpage.


Budget and Appropriations

Congress returned from the holiday recess and began work on the funding for Fiscal Year 2024. On January 7, 2024, a bi-partisan agreement on funding levels for 2024 was released. This agreement includes the same funding levels that were part of the Fiscal Responsibility Act signed in June 2023 which suspended the limit on the federal debt and made some changes to federal spending limits. Having the top funding levels allows the House and Senate to continue work on appropriations bills.

Another aspect of their work is the Continuing Resolution (CR) which continues last year’s funding while Congress works to complete the budget process. The CR which was signed by the President in November 2023 was set to expire for some agencies on January 19, 2024, and other agencies on February 2, 2024. On January 18, 2024, Congress passed another CR extending funding for appropriated programs through March 1, 2024 (Agriculture, Military Construction/VA, Energy/Water, and Transportation/Housing and Urban Development bills) and through March 8, 2024 (Labor-HHS-Education, Defense, State/Foreign Operations, Commerce/Justice/Science, Financial Services, Interior/Environment, Legislative Branch, and Homeland Security bills). The next several weeks will be busy to meet the new deadlines.

Healthcare Accessibility

The US Department of Justice is proposing a rule under the Americans with Disabilities Act (ADA) to improve access to healthcare for people with disabilities. The rule would set standards detailing the responsibilities of hospitals and healthcare clinics under the law.  Under the proposal, state and local government entities that provide health care would be barred from denying services to patients with disabilities because of a lack of accessible equipment and such providers would be prohibited from requiring people with disabilities to bring someone to help them with an exam.

The proposal is the result of numerous complaints from people with disabilities who have experienced difficulty getting basic services by health care providers due to a lack of accessible equipment. The proposal is up for public comment through February 12, 2024.

Census Bureau Change

The Census Bureau has proposed a big change to some of the disability questions on its community survey that will reduce the number of people who are counted as having a disability. It is estimated that the change could reduce the number by 40%. Instead of simple “yes” and “no” questions, people will be asked to indicate how much difficulty they have with certain activities. The Census Bureau is recommending that only people who answer with “a lot of difficulty” or “cannot do at all” be counted as having a disability. 

This change is important because the numbers from the census affect federal funding and decisions government agencies make about accessible housing, public transportation, and civil rights enforcement. While the initial timeframe for public comments has passed, there will likely be another time for feedback in the Spring of 2024. Final approval from the White House Office of Management and Budget is needed by June 1, 2024 for any changes to show up in 2025.

ABLE Accounts

Beginning with the new year, people with disabilities will be allowed to put aside more money in their ABLE accounts. The annual deposit limit for ABLE accounts will increase to $18,000 from $17,000. People with disabilities can save more (up to $14,580 in addition) if they are employed and do not contribute to a retirement plan.

ABLE accounts are currently offered through state programs to people with a disability onset before age 26. But that age limit will rise to age 46 starting in 2026.

February Self-Advocate Discussion Series: Transportation and Travel

Back by popular demand! Join us on February 21 at 1 p.m. to discuss transportation and travel for people with disabilities. Self-advocates will talk about public and private ground, water, and air transportation. Accessible and community-supported transportation systems will be discussed, too. Experts will share about their experiences and give advocacy tips.

As always, we’ll have time to hear from YOU! What does ideal transportation mean to you as a self-advocate? What do you need to make it easier to get to where you want to be? And to get there at the time you choose? If you are interested in improving transportation and traveling for people with disabilities in North Carolina, please join us!

Register today!

NCCDD's Self-Advocate Discussion Series is held on the third Wednesday of each month at 1PM. 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.

New Law Creates Long-term Change in North Carolina’s Guardianship System

With a focus to promote less restrictive alternatives to guardianship, otherwise known as supported decision-making, and to ensure the rights of people before and after the appointment of a guardian), Senate Bill 308, otherwise known as the Guardianship Rights Bill, was passed unanimously in the Senate (47-0), and later became Senate Bill 615 which passed in the Senate and the House. Governor Roy Cooper signed it into law on September 28, 2023.

According to the American Civil Liberties Union, supported decision-making (SDM) allows people with disabilities to retain their decision-making capacity by choosing supporters to help them make choices. A person using SDM selects trusted advisors, such as friends, family members, or professionals, to serve as supporters. The supporters agree to help the person with a disability understand, consider, and communicate decisions, giving the person with a disability the tools to make their own informed decisions.

“The right to make decisions is the essence of becoming an adult and making choices about one’s life,” said Linda Kendall-Fields, Director of the UNC Cares Program and leader of the initiative. “Guardianship should always be used as a last resort as it removes the individual’s constitutional right to make important life decisions, such as how to use money and where to live. Sometimes it is necessary and then it should be practiced with great consideration of the individual’s expressed wishes. But in North Carolina, like other places in the United States, it has been used too easily, with great consequence for people with IDD. This law is a triumph for choice and self-determination.”

The policy education and advocacy efforts that led to guardianship reform were led by “Making Alternatives to Guardianship a Reality in North Carolina (MAR-NC),” an initiative funded by the North Carolina Council on Developmental Disabilities (NCCDD) and administered by the Cares Program at the UNC Chapel Hill School of Social Work. MAR-NC was instrumental in the passage of a consensus bill for guardianship reform by creating a coalition aimed to affect long-term changes in North Carolina’s guardianship system that would increase choice and self-direction for individuals with intellectual or other developmental disabilities (I/DD).

The MAR-NC statutory writing team created a draft spelling out important reforms and then partnered with the Conference of Superior Clerks of Court, the UNC School of Government, and the Estate Planning & Fiduciary Law Sections of the state bar to finalize proposed statutory changes. The agreed upon changes were, (1) a mandate to consider alternatives that carry the least restrictions for the lives of people facing potential guardianship; (2) a need to make sure all parties are fully informed about relevant rights; and (3) the ability of courts to monitor guardianships and call for hearings if needed.

Passage of Senate Bill 615 is important for individuals with I/DD and their families, specifically in allowing people with I/DD to choose the people they want to help them make choices and expand their freedom of how they choose to live.

“This law is a great example of how policy education and advocacy with a collective effort can lead to systems change that benefits individuals with I/DD and their families,” said Talley Wells, executive director of NCCDD. “People with disabilities should be able to make well-informed decisions about their lives, and this law empowers them to be aware of their rights to do so.”

The MAR-NC initiative was built upon the successes from a five-year Collective Impact initiative called “Rethinking Guardianship,” a statewide workgroup that has, with support from UNC Cares at the School of Social Work in Chapel Hill, established strong partnerships with individuals with I/DD, their families, leaders in the North Carolina State Bar and other stakeholders.

In addition to the passage of the bill, the MAR-NC initiative’s activities included reaching over 1,400 individuals through educational trainings and outreach; creating awareness among self-advocates, family, friends and professionals of the concept of supported decision-making; and developing educational materials in English and Spanish about supporting choice and self-determination.

Learn more about the MAR-NC initiative by reading its final report by visiting the Rethinking Guardianship website at https://rethinkingguardianshipnc.org/.

Hispanic Disability Outreach: Upcoming Employment Webinar


Seminario Web sobre Beneficios Públicos y Empleo

El Consejo sobre Discapacidades en el Desarrollo de Carolina del Norte (NCCDD) y Service Source tienen el placer de invitarte al Seminario Web sobre Beneficios Públicos y Empleo, que se llevará a cabo el miércoles 21 de febrero de 2024, a las 6:00 p.m. Durante este evento, exploraremos el impacto de los ingresos laborales en los beneficios públicos destinados a personas con discapacidades. El contenido del seminario web incluirá además información sobre los diversos programas de beneficios públicos, incentivos para el empleo y estrategias financieras para garantizar una transición exitosa de vuelta al trabajo. Este evento será en español con traducción al inglés. La información sobre el registro para el evento se publicará próximamente.

Para obtener más información, no dudes en ponerte en contacto con:

Pablo Puente en correo electrónico: [email protected] o teléfono: 919-785-6631 o Irlanda Ruiz, Defensora Hispana de Personas con Discapacidad en correo electrónico: [email protected] o teléfono: 984-920-8215.



Public Benefits and Employment Webinar

The North Carolina Council on Developmental Disabilities (NCCDD) and Service Source cordially invite you to the Public Benefits and Employment Webinar, scheduled for Wednesday, February 21, 2024, at 6:00 p.m. During this webinar, we will discuss how income from employment can impact the public benefits received by individuals with disabilities. The webinar will also cover common public benefit programs, employment incentives, and strategies for maintaining financial health as we return to work. This event will be conducted in Spanish with English translation. Information regarding registration will be released later.

For more information, please contact:

Pablo Puente Email: [email protected] Phone: 919-785-6631 or Irlanda Ruiz, Hispanic Disability Advocate Email: [email protected] Phone: 984-920-8215. 

Exercise Your Right to Vote!

Primary elections are coming in May and the general election will occur in November. Plan ahead to make sure you are ready to vote! The first step is making sure you are registered. Use this link to check your registration status: https://www.usa.gov/confirm-voter-registration.

En Español - enero 2024

En Español - enero 2024

Audio - Highlights and Hot Topics - January 2024


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North Carolina Council on Developmental Disabilities

Office Hours: 9AM-4PM Monday-Friday
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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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