• • • • • • Letter from the Executive Director
          • Public Policy (as of November 22, 2023)
          • Advocacy and Leadership Awards Recipients Announced
          • NCCDD Releases its 2022-2023 Annual Report
          • New Leadership in Council Member Positions
          • Hispanic Outreach: Saturday Conversations
          • Join December’s Discussion on Giving as a Self-Advocate
          • En Español - noviembre 2023
          • Audio - Highlights and Hot Topics

Letter from the Executive Director

It is the season of Thanksgiving!  

I am thankful because there was significant progress in the 2023 North Carolina budget for the intellectual and other developmental disabilities (I/DD) community. Still, there was not nearly enough progress to meet the unmet needs in our community.

I asked one of our legislative leaders how we should thank our legislators when there is so much more work that needs to be accomplished. His recommendation was to say –

“THANK YOU!!! . . . AND . . .”  

His emphatic point was that we need to say thank you for the progress in the budget.  And then after thank you, and only after we say thank you, discuss how we can build on that progress.

Thank you for all the progress we made in 2023, and we are eager to build on the progress by meeting the needs that remain unmet. 

This is the season of gratitude.  And we have much for which to be thankful.  

• An increase of 180 million dollars (in state and federal funds) for Innovations Waiver Direct Support Professionals (DSPs);
• New 1915(i) Medicaid that could serve up to 10,000 people; 
• Funding for Inclusive Post-Secondary Education at community colleges, the University of North Carolina at Wilmington, North Carolina State University, and North Carolina Central University; 
• Funding for Competitive Integrated Employment; 
• Medicaid Expansion; 
• Increased investment in crisis services; and 
• 350 additional Innovations Waiver slots. 

We are grateful for high-level bipartisan meetings throughout the year with the Governor, Health Appropriations Chairs, legislators from across the state, and Secretary Kinsley.

We made progress. And we must build on that progress. 

I recently met with parents in their 70s and 80s who are deeply fearful of what will happen to their adult children with I/DD when they pass. I also spoke with a friend with I/DD who plans on leaving the state when his parents can no longer help support him. We have 17,000 people on our Innovations Waiver waiting list and a growing workforce shortage. 

So, it is time to say thank you to our legislators . . . and it is time to develop long-term relationships with them so they know how much we need to build upon our progress in 2023.

Talley Wells, Executive Director

Public Policy (as of November 22, 2023)

State

Legislature

Short session will begin on April 24, 2024. The short session allows legislators to review and adjust the state’s two-year budget that was adopted the previous year. During the short session, lawmakers may only consider new legislation that impacts the budget or bills that passed during the long session. Two areas of particular interest for people with I/DD from the previous budget were the 350 Innovations slots and the $60 million for increasing direct support professional salaries. Both items address critical areas but fall short of what is needed. The short session is an opportunity to continue education and advocacy around the need for more Innovations slots and the additional funds needed to increase DSP rates to at least $18 an hour.

Tailored Plan Readiness and LME/MCO Streamlining

During the long session, the legislature gave the Secretary of the Department of Health and Human Services (DHHS) more authority over the LME/MCOs and directed the Secretary to reduce the number of LME/MCOs to four or five. As a result, Secretary Kinsley issued a directive on November 1, 2023 that describes the process of reducing the number to four LME/MCOs:

• Sandhills, Eastpointe, and Trillium will be combined
  • Exceptions: Davidson County to Partners; Harnett County to Alliance; Rockingham County to Vaya
• Four remaining
  • Trillium Health Resources
  • Alliance Health
  • Partners Health Management
  • Vaya Health

There is an aggressive timeline outlined in the directive and the goal is to have the four LME/MCOs established and ready to launch the Tailored Plan by July 2024.

Federal

Budget

There is still not agreement on the budget for the federal fiscal year which began on October 1. A continuing resolution (CR) which kept the government running was scheduled to expire on November 17.

On November 16, the President signed a second continuing resolution (CR) for fiscal year 2024 that is "laddered," or consists of two separate expiration dates for two separate sets of appropriations bills. The Senate passed the measure on November 15, after the House passed the bill on November 14. The first expiration date in the CR, January 19, would apply to the programs covered by the Agriculture, Energy-Water, Military Construction-VA, and Transportation-HUD bills. The second expiration date, February 2, would apply to the programs covered by the Commerce-Justice-Science, Defense, Financial Services-General Government, Homeland Security, Interior-Environment, Labor-HHS-Education, Legislative Branch, and State-Foreign Operations bills.

Unintended Consequences of Proposed Rule

I/DD providers are concerned about a federal proposal to extend overtime pay to millions of additional workers. The U.S. Department of Labor issued a proposed rule in September that would require employers to pay most salaried workers earning less than about $55,000 per year overtime pay if they work more than 40 hours in a week. The American Network of Community Options and Resources, or ANCOR, which represents 2,100 disability service providers across the nation, is worried that this change could have deep consequences for people with developmental disabilities seeking services to help them live in the community. The rule could lead to more than $1 billion in additional expenses for disability service providers in the first year alone, the group estimated in a report released this month. As we know, disability providers are dependent on funding from Medicaid, and the rates are not high enough to fund these additional expenses. This could result in cuts in programs and services for people with I/DD.

Advocates have raised these concerns to the Department of Labor (DOL), and DOL is reviewing feedback and comments.

Ed Department Finds Students with Disabilities Disproportionately Disciplined

According to the review of the latest civil rights data by the Department of Education, children with disabilities are far more likely than other students to be restrained, secluded, suspended, expelled, or referred to law enforcement. The Department of Education typically collects civil rights data every other year. But such activities were paused during the COVID-19 pandemic, and the current release is the first since 2020 when officials put out data collected about the 2017-2018 school year.

Across the country, 17% of public school students have disabilities, with 14% served under the Individuals with Disabilities Education Act (IDEA) and 3% covered only by Section 504 of the Rehabilitation Act, the report shows. By comparison, students with disabilities accounted for 15.9% of enrollment in 2017-2018.

The latest findings indicate that those with disabilities continue to be disciplined at disproportionate rates, representing 29% of K-12 students who received out-of-school suspensions and 21% of expulsions. They were also more likely to experience school-related arrests or be referred to law enforcement.

Of the 42,500 allegations of harassment or bullying reported by public school students during the 2020-2021 school year, 9% were on the basis of disability.

Children served under IDEA were far more likely than others to experience restraint and seclusion, accounting for 32% of those mechanically restrained, 81% of students who were physically restrained, and 75% of kids who were secluded. They also were less frequently enrolled in mathematics and science courses.

The Arc Names New Director

The Arc of the United States, the oldest and largest nonprofit serving people with I/DD, recently named Katherine (Katy) Neas as its new CEO. Katy brings more than 35 years of experience in disability policy and public and nonprofit leadership to the role. Her tenure with The Arc of the US will begin in January 2024. She has recent experience with the U.S. Department of Education, American Physical Therapy Association (APTA) and Easterseals. Her early work includes federal legislative work as a Legislative Assistant where she worked on legislation such as the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA). Katy holds a B.A. from Georgetown University. Katy is a visionary leader who has devoted her career to disability rights.

Advocacy and Leadership Awards Recipients Announced

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. This year’s recipient is Jacklyn Boeheler from Carrboro. She is involved with managing grant projects with the University of North Carolina Chapel Hill in the UNC TEACCH Autism Program where her leadership has been instrumental in accomplishing innovative outcomes for systems change benefitting the inclusion of individuals with I/DD while encouraging self-determination. Boeheler is also co-founder and executive director of B3 Coffee, a non-profit organization that provides community-based integrated social and vocational opportunities for people of all abilities. Boeheler is consistently sought out for consultations and presentations about her expertise in self-determination that creates real-world change. Watch a video about Jacklyn Boeheler.

The Jack B. Hefner Memorial Award honors family members or volunteers advocating and building a better North Carolina for people with I/DD. This year’s award was presented to Sarah Potter of Pfafftown. Potter’s path to advocacy is rooted in her commitment to advocate for her son, Matt, who has also become an advocate for himself and others due to his experiences of watching his mother advocate. She even inspired many of her son’s friends to become advocates, too, through nurturing, nudging and no-nonsense encouragement. For decades, Potter has served on numerous local, regional and statewide committees and initiatives making her a constant, positive presence in the forefront of policy and service development. She is described by others as a force that continues to give every day. Watch of video about Sarah Potter.

The Helen C. "Holly" Riddle Distinguished Service Award recognizes professionals who have made lasting contributions towards improving opportunities, breaking down barriers and promoting increased quality of life for people with I/DD in North Carolina. This year, the award was presented to Dr. Bill Milner and Betsy White from Asheboro who are the founders, leadership and driving force behind the successful development of Access Dental Care. Nationally recognized as experts in special care dental services for people with disabilities, Milner and White are passionate about oral health equity and the importance of a dental home that provides comprehensive, compassionate continuity of care across the life span. Their commitment was recently recognized by the American Dental Association (ADA) when they were presented with the 2023 ADA Humanitarian Award. Their passion to provide services and listen to individuals and their caregivers over the years has now given access to quality dental care leading to healthier outcomes. Watch a video about Dr. Bill Milner and Betsy White.

NCCDD Releases its 2022-2023 Annual Report

The North Carolina Council on Developmental Disabilities (NCCDD) released its 2023 Annual Report highlighting its accomplishments made through its projects and initiatives to improve supports and services for North Carolinians with intellectual or other developmental disabilities (I/DD).

It was a year of advocacy with a heavy emphasis on the Innovations Waiver waiting list and the Direct Support Professional (DSP) workforce shortage. NCCDD’s policy education work was led by Council Chair Bryan Dooley. This included policy meetings with Governor Roy Cooper, NC Department of Health and Human Services (NC DHHS) Secretary Kody Kinsley, leaders from the DHHS and legislators. The Council’s policy education was driven by its five policy priorities.

Initiatives made substantial strides in furthering the three goals of the NCCDD’s Five-Year State Plan: Community Living, Financial Asset Development and Advocacy Development.

In Community Living, NCCDD’s “Making Alternatives to Guardianship a Reality in North Carolina” initiative successfully concluded its extraordinary work with a new law passing the General Assembly and with powerful education tools. NCCDD’s “Justice: Release, Reentry, and Reintegration” initiative also concluded its successful work supporting people with I/DD to return to the community from prison and the NC DHHS will continue to support this initiative for at least two more years.

In Financial Asset Development, NCCDD worked with the i2i Center for Integrative Health to prepare for a conference on how advocates can come together to increase competitive integrated employment. NCCDD continued its work to train leaders on benefits counseling, which is a critical component of employment for the I/DD community. The Council also supported a white paper on how individuals with I/DD and family members can work on Tailored Care Management teams as Care Extenders.

In Advocacy Development, NCCDD continued to support a pioneering Peer Mentor initiative that has gained national and state interest for individuals with I/DD to be employed as peer mentors. NCCDD’s “Self-Advocate Discussion Series” continued its important work bringing together self-advocates to discuss critical topics from personal relationships to talking with legislators. NCCDD grew its Ability Leadership Project (ALP) initiative which trains self-advocates and family members to be leaders and includes self-advocate teachers.

NCCDD also debuted a powerful film, “Unmet: North Carolina’s Disability Crisis.” The film brought viewers into the homes of individuals with I/DD and their families experiencing crises due to the workforce shortage and waiting list. NCCDD partnered with providers to do a DSP rate study that was necessary to determine the financial amount to increase wages.

Finally, to continue the Council’s work to reach wider communities, NCCDD welcomed a new staff member, Irlanda Ruiz, as the Council’s Hispanic Disability Community Advocate to build connections and provide public health education across the state.

The 2023 Annual Report is available online at https://nccdd.org/general-content/1430-2023-annual-report.html in both English and Spanish.

New Leadership in Council Member Positions

The following changes in Council member leadership were announced at NCCDD’s November meeting. We congratulate each person and look forward to their contributions.

Jon D’Angelo - Vice Chair

Jon D'Angelo, a Council member since 2022, was elected to be NCCDD’s Vice Chairperson. He is an East Carolina University graduate and works full-time with an insurance broker out of Atlanta. He is also on the Waiting List for the Innovations Waiver and currently receives two-thirds of his care from his aging parents for physical assistance with most activities for daily living. 

“I have Spinal Muscular Atrophy type 2,” said D’Angelo. “I have CAP-DA, but it doesn’t provide the hours needed to avoid a care crisis. If I go into a care crisis because of DSP [Direct Support Professional] pay or the waiting list, everything I’ve worked to achieve professionally and personally will be completely destroyed. Most 34-year-olds with a master’s degree don't fear going into a nursing home, but I do, and it is something I’ve feared since my freshman year at ECU.”

His top two policy education priorities for NCCDD are:

• Increase Innovations Waiver slots. 2,000 additional slots each year for the next 8 years is needed to end the waiting list.
• Increase DSP wages to ensure a sufficient workforce.

Bethany Smith: Secretary

Bethany Smith, elected to be Secretary, graduated with honors in May from Western Carolina University with a bachelor's degree in Emergency and Disaster Management with a minor in Business Law and started graduate school at East Carolina University this fall so pursue her master's degree in Criminal Justice. Her first policy proposal was written on protective measures for victims of intimate partner violence and domestic violence, and she would like to work with crime victims in the future.

Smith is vice-chair for Youth LEAD NC, served on Disability Rights NC’s PAIMI Advisory Council for six years and enjoys traveling, video gaming, painting, learning other languages, graphic design and poetry.

Her two top policy education priorities for NCCDD are:

• Promoting alternatives to guardianship.
• Improving measures that will allow people with I/DD to integrate into and/or successfully live within the community of their choice, in the least-restrictive setting possible.

Donna Spears: Advocacy Development Chair

Donna Spears, a Council member since 2019, served this past year as Secretary to the Council; this year, she was elected as Advocacy Development Committee Chairperson. She has the CAP-DA Medicaid Waiver and a Direct Support Professional (DSP) who supports her with activities of daily living.

Spears serves on the Advisory Board for the state Subminimum Wage to Competitive Integrated Employment grant and is particularly concerned about the workforce shortage for DSPs, the Innovations Waiver waiting list and competitive integrated employment.

Her top two policy education priorities for NCCDD are:

• Increase Innovations Waiver slots. At least 2,000 additional slots each year for the next 8 years is needed to end the waiting list.
• Increase DSP wages to ensure a sufficient workforce.

Hispanic Outreach: Saturday Converations

VERSIÓN EN ESPAÑOL

Conversatorio sabatino: Bienestar y salud de la comunidad Latina

El Consejo de Discapacidades en el Desarrollo en Carolina del Norte y la organización comunitaria ENLACE-Charlotte llevaron a cabo el primer conversatorio sabatino: BIENESTAR Y SALUD DE LA COMUNIDAD LATINA el pasado 21 de octubre en el Belmont Center. Este conversatorio fue en español y fue conectar a la comunidad con organizaciones locales que brindan servicios de salud y servicios a la población con discapacidad en el área de Charlotte y sus alrededores.

En el evento los participantes tuvieron la oportunidad de conocer sobre: iniciativas de salud comunitaria gratuitas o de bajo costo que están disponibles, cómo acceder a servicios para personas con discapacidades del desarrollo, adquirir pruebas, mascarillas e información sobre Covid-19. El público también pudo conversar cara a cara con los representantes de las diferentes organizaciones, hacer preguntas y coordinar citas. El evento contó con la participación de familias, personas con discapacidad, profesionales y la comunidad en general.

Las siguientes organizaciones proporcionaron información y recursos:

• Departamento de Salud de Carolina del Norte, División de Bienestar Infantil y Familiar, Sección de Salud integral del Niñ@
• Atrium Health
• Alliance Health
• Camino Health
• Grupo Poder y Esperanza
• Disabilities Rights & Resources
• Cognosante
• Raleigh Immigration Law Firm
• Carolina Pharmacy
• Mecklenburg County Government

Para obtener más información sobre los Conversatorios Sabatinos o las organizaciones mencionadas, comuníquese con Irlanda Ruiz, Defensora Hispana de Discapacidades al 984-920-8215 o [email protected].

ENGLISH VERSION

Saturday Conversation: Well-Being and Health of the Latino Community

The North Carolina Council on Developmental Disabilities (NCCDD) and the community organization ENLACE-Charlotte held the first Saturday Conversation, “Well-Being and Health of the Latino Community,” on October 21 at the Belmont Center. This conversation was in Spanish and the purpose was to connect the community to local organizations that provide health and disability services in the Charlotte and surrounding areas.

At the event, the participants had the opportunity to learn about free or low-cost community health initiatives that are available, how to access services for people with developmental disabilities and how to acquire tests, masks, and information about COVID-19. The public could also talk one-on-one with the representatives of the different organizations, ask questions and coordinate appointments. The event was attended by families, people with disabilities, professionals and the general community.

The following organizations provided information and resources:

• North Carolina Department of Health, Division of Child and Family Welfare, Comprehensive Children Health Section
• Atrium Health
• Alliance Health
• Camino Health
• Grupo Poder y Esperanza
• Disabilities Right & Resources
• Cognosante
• Raleigh Immigration Law Firm
• Carolina Pharmacy
• Mecklenburg County Government

For more information about Saturday Conversations or the above organizations, please contact Irlanda Ruiz, Hispanic Disability Community Advocate at 984-920-8215 or [email protected].

Join December’s Discussion on Giving as a Self-Advocate

During December’s webinar, the Self-Advocate Discussion Series will engage self-advocates to discuss “giving back” within the I/DD community, what it means to make an impact, and how small acts of kindness can make a bigger impact than we think. Self-Advocates are welcome to join us on Wednesday, December 20 from 1 to 2PM to be a part of the conversation. Register for the November meeting.

This Discussion Series is facilitated by Chris Hendricks, NCCDD Policy Education Coordinator and NCCDD self-advocate members, and offers you a chance to spend time with others with common interests, develop your personal story to be goal and topic-oriented, and become part of the NCCDD community. You can view video recordings of previous Self-Advocate Discussion Series webinars on our YouTube channel.

En Español - noviembre 2023

En espanol - noviembre 2023

Audio - Highlights and Hot Topics