Article from the NCCDD FY 2022-2023 Annual Report

This was the second year of NCCDD’s 2022-2026 Five-Year State Plan. The State Plan aims to advance the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act) through its requirements of self-determination, independence, productivity, integration, and inclusion for individuals with I/DD and  their families. The plan’s goals, to be achieved by 2026, include:

1. Increase financial security through asset development;
2. Increase community living; and,
3. Increase advocacy.

In this section we highlight the accomplishments of many of our inititaves. See also a list of all of our current initiatives.

Success in Helping Prisoners with Disabilities Find Sustainable, Meaningful Employment Upon Release

State Plan Goal: Increase Community Living

In 2020, the Justice: Release, Reentry, and Reintegration initiative launched with a focused mission to improve outcomes for individuals with I/DD when they transitioned back into the community after incarceration. The project’s goals focused on reducing the rearrest, reconviction, or reincarceration of individuals with I/DD by implementing and expanding successful practices for reintegration into the community.

Aligned with its Five-Year State Plan Goal 2 that aims to increase Community Living, NCCDD funded this project because it recognized that incarcerated people with I/DD needed training in skills and making connections to resources to successfully reintegrate into society.

The grant recipient was the Alliance of Disability Advocates (ADA) located in Raleigh, NC. The grant was led by Sharif Brown, Re-entry Program Manager for ADA, who previously did reentry work at the Butner Federal Correctional Institute. He implemented the Individualized Reentry Plan (IRP) philosophy at Butner and assisted 200 inmates, of which only two reoffended.

Following his success, ADA was presented with a grant from NCCDD to implement the same IRP process in state prisons.

Activities of this initiative included:

• Culturally competent (inclusive, diverse) skill-building and support programming.
• Personal and service network building, including peer support.
• Continuity/seamless support of needed services and resources.
• Accessibility advocacy, advocacy to remove stigmas and reduce the barriers to successful reentry.
• Research supporting well-being and esteem-building strategies.
• Free General Educational Development (GED) training.
• Full wraparound services for individuals in the geographic area served by the ADA.

The IRP focuses on helping each inmate to identify and find the appropriate supports and services they need to become thriving citizens in their community. By doing so, it reduces the chance of the individual reoffending and ending up back in prison.

North Carolina’s state prison overall recidivism rate, or returning to prison, is 45%. After implementing the IRP process for this initiative, Brown reported that the success rate of not returning to prison was 88.9%.

“Each person has different situations and supports needed to help them succeed,” said Brown. “A person with I/DD may have even more supports they need for their daily life needs. These resources are essential for when they are released, to avoid reoffending.”

But it’s easier said than done. According to Brown, there are not enough resources once they are released. He cites lack of housing as a big issue, which can cause many to become immediately homeless after being released.

The IRP process is a way to avoid these situations. Brown also focuses on empowering individuals.

“I can’t stress enough how important it is for empowerment to begin while the individual is still in prison,” said Brown. Due to the strict structure of prison life, many lose their sense of self-direction.

“Empowerment means teaching them to take responsibility for their actions and to learn how to take care of themselves,” added Brown. “Many lose all of their family support when they are released. If they are completely on their own and without the proper resources, they will be more likely to reoffend so they can return to the structured environment of prison life. This helps them learn how to take care of their own plan and depend upon themselves to thrive.”

Although the project with NCCDD is now completed, its success did not go unnoticed. The NC Division of Mental Health, Developmental Disabilities and Substance Use Services (DMH/DD/SUS) recognized the importance of this project and positive outcomes and will continue to fund this as a long-term program. Additionally, the program will expand to those who have been diagnosed with Traumatic Brain Injury (TBI).

The funding from DMH/DD/SUS will also allow the ADA to work longer with their clients, expanding their services from 90 days to one year.

“My hope is that this program will expand by using the success of the work we did with the NCCDD project by creating a model that will be implemented statewide and, most importantly, supported by the State budget,” said Brown.

Learn more about this initiative

Read a news article about the project from NC Health News

Expanding Competitive Integrated Employment

State Plan Goal: Financial Asset Development

North Carolina has a goal of increasing Competitive Integrated Employment (CIE) for people with I/DD. CIE is employment in which individuals work in the community at a competitive wage.

In March 2019, Governor Cooper issued an Executive Order outlining North Carolina’s Employment First strategy. As a result, the North Carolina Department of Health and Human Services (NCDHHS) developed a Five-Year Strategic Plan to transition the State to CIE.

Some communities throughout North Carolina developed innovative models of integrated employment and vocational programming. In 2022 and 2023, NCDHHS entered into agreements with Disability Rights NC and the Center for Public Representation to increase CIE.

The I/DD community had important questions about CIE, so NCCDD provided funding to the i2i Center for Integrated Health to engage individuals within the I/DD community and other stakeholders to re-image what it would look like when North Carolina does this work.

In November 2022, the i2i hosted an information session. Individuals with I/DD, families, providers, and state representatives shared their knowledge and thoughts about the state’s transition to CIE, benefits counseling, family-driven approaches, and more. A panel of experts from state agencies and organizations, including a parent and a sibling of individuals with I/DD, answered questions and listened to the comments made by those attending.

Additionally, i2i published the North Carolina Transition to Competitive Integrated Employment: Valuing all Perspectives, a white paper to help the I/DD community and all stakeholders better understand all perspectives on the transition to CIE. This white paper will be used to develop a summit in 2023 to give an additional opportunity to hear and learn from North Carolina stakeholders and other states that have transitioned to CIE. At the time of this writing, i2i is preparing a half-day conference on CIE to bring all stakeholders together in December 2023.

Advocating for Supported Decision-Making: Rethinking Guardianship

State Plan Goal: Community Living

With a focus to promote less restrictive alternatives to guardianship and to advocate for supported decision-making, Making Alternatives to Guardianship a Reality in North Carolina, also known as MAR-NC, was funded by NCCDD. This 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 project builds upon the successes from a five-year Collective Impact initiative called Rethinking Guardianship. Rethinking Guardianship is 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.

Work on the MAR-NC project ended in 2023 and was a huge success. Over 1,400 individuals were reached through educational trainings and outreach; self-advocates, family, friends and professionals became more aware of the concept of supported decision-making; educational materials about supporting choice and self-determination were created in print and video formats (English and Spanish); and statutory guardianship reform is underway.

On the legislative front, MAR-NC’s coalition aimed to affect long-term changes in North Carolina’s guardianship system (Chapter 35A reform of the North Carolina General Statute) that would increase choice and self-direction for individuals. The coalition wrote 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 are:

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.
3. The ability of courts to monitor guardianships and call for hearings if needed.

A consensus bill for guardianship reform was filed by the NC Bar Association during the 2023 long session of the NC General Assembly. Senate Bill 308, otherwise known as the Guardianship Rights Bill, was passed unanimously in the Senate (74-0), later became Senate Bill 615, which passed in the Senate and the House, and Governor Roy Cooper signed it into law on September 28, 2023.

MAR-NC: By The Numbers

• 1,419 individuals reached through trainings from July 2020 to June 2023
• 156 DSS social workers and public guardians enrolled in or completed Fundamentals of Guardianship training
• 60 NC Clerks of Court trained on Supported Decision Making
• 28 individuals who contributed to Senate Bill 308
• 6 individuals with I/DD participating in MAR-NC
• 12 family advocates participating in MAR-NC

Learn more about this initiative:

• Read the final report: Making Alternatives a Reality in North Carolina
• Watch a video: Rethinking Guardianship: Tylor Freeman's Story

Unmet: Film Debuts throughout the State

State Plan Goal: Advocacy Development

The film, “Unmet: North Carolina’s Disability Crisis,” is a 25-minute documentary commissioned by NCCDD. It debuted on March 9, 2023 at the ACE Theater Complex at the UNC School of Arts in Winston-Salem. The film shows the reallife situations of individuals with I/DD and what it looks like when their needs are unmet due to the workforce shortage and waiver waiting list. The event welcomed approximately 150 people to the showing, which was followed by a panel discussion about action steps to address these crises.

Many individuals with I/DD who qualify for services in the state are waiting for funding from the North Carolina General Assembly to become available. These individuals are placed on a waiting list called the Registry of Unmet Needs (RUN). There are approximately 17,000 people on the waitlist, and many have to wait for over 10 years for essential services. And, the list keeps growing.

In addition, many also need daily support such as physical assistance, bathing, cooking, and more to live in their homes and community safely. This assistance is provided by Direct Support Professionals (DSPs).

With DSPs earning an average of approximately $13 an hour in the state, many North Carolinians with I/DD find it impossible to find the staff for necessary services. Nationally, a 2022 report by ANCOR found 63% of providers are discontinuing programs and services due to insufficient staffing.

“These are two long-simmering crises that we have to meet now,” stated Talley Wells, NCCDD Executive Director. “The Unmet film brings viewers inside the homes of North Carolina families and people with I/DD to see what our neighbors are experiencing due to the waitlist and workforce shortage.”

Winston-Salem native, Bryan Dooley, appointed to NCCDD by Governor Cooper and its current Chairperson, is among those featured in the film. “We hope that our state leaders will respond to these crises with bold action to support us. People with I/DD, when receiving adequate supports and services, can be productive, engaged citizens in their communities, and we can contribute to our society.”

Additional showings were held later in other North Carolina cities including Wingate, Greenville, and Asheville, along with a virtual screening. It was also shown to advocacy leaders across the country at the National Association of Councils on Development Disabilities (NACDD) Conference in Orlando, Florida in July. 

The screenings include a film viewing, a panel discussion, and a call to action for what people can do to bring attention and solutions to issues facing the I/DD community in North Carolina.

Discussion Series Prepares Self-Advocates to Influence Change

State Plan Goal: Advocacy Development

In its second year, the Self-Advocate Discussion Series worked to attract, prepare, organize and mobilize North Carolina self-advocates to influence social and systems change. Facilitated by NCCDD Policy Education Coordinator Chris Hendricks and NCCDD self-advocate members, the Council held online monthly webinars throughout the year.

Each session featured self-advocate leaders and presenters; engaging presentations; current and important topics; and community event announcements for self-advocates. Experts, trainers, and decision-makers offered approaches for accessing, speaking, and following up with legislators and policymakers. Topics included transportation, communications, housing, and more.

The series emphasized the value of people with I/DD by building on skills to meet and develop relationships with NC legislators and decision-makers, while bridging connections and creating a network among NC self-advocates. Attendees develop their personal goal and topic-oriented story to share with others.

Watch the series in English and Spanish on YouTube.