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September 2023 Highlights and Hot Topics

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Letter from the Executive Director 

Telley Wells

Every September, we celebrate Direct Support Professionals (DSPs). This year, it is more important than ever to recognize their critical contributions due to the workforce shortage and increased demand.

NCCDD presented to Secretary Kody Kinsley and DHHS leadership on September 5th about the critical issues impacting DSPs.

These issues for DSPs in North Carolina include:

  • The workforce shortage;
  • Low pay;
  • Lack of good data on pay;
  • Inconsistent job titles;
  • Lack of a standard U.S. Labor Job Classification;
  • Lack of quality training opportunities; and
  • Lack of job advancement opportunities.

During the presentation, Pam Hunter Dempsey spoke about our film, Unmet, and we showed two clips. The clips show the stories of the impact of the DSP shortage.

At the conclusion of our presentation, we made the following ten recommendations for how the state can move forward.

  1. Ensure regular high quality DSP rate studies, which include average pay and amount of allocated funds that actually are received by DSPs.
  2. Project DSP needs for future years.
  3. Continue to raise legislative awareness of DSP and supervisor funding needs, including addressing the added demand of 1915 (i) as it is implemented.
  4. Ensure there are a sufficient number of quality DSPs in all fields and areas.
  5. Support and fund quality DSP trainings.
  6. Support higher education training of DSPs.
  7. Bring together the various NC groups working on DSP issues.
  8. Implement short-term and long-term Caregiving Workforce Council recommendations.
  9. Support efforts for a standard U.S. Labor occupation classification.
  10. Hold a DHHS DSP town hall community conversation on the DSP workforce.

Since the time we made these recommendations, I spoke with providers at the recent North Carolina Providers Council Conference. Providers I spoke with had one more recommendation. They said that there need to be fixes to the onboarding process for new DSPs to make sure they are paid while they undergo training and background checks and begin traveling to work.

Talley Wells, Executive Director

Public Policy (as of September 22, 2023)


SSI Savings Penalty Elminiation Act

SSI has many rules that make it hard for people to save money and get out of poverty. The asset limit has not been updated since 1989. Assets include cash, money in bank accounts, most retirement accounts, and other financial resources. Right now, people who get SSI can only have $2,000 in assets. Married couples can only have $3,000.

On September 12th, the SSI Savings Penalty Elimination Act (S.2767/ H.R. 5408) was introduced by Senators Sherrod Brown (D-OH) and Bill Cassidy (R-LA) and Representatives Brian Higgins (D-NY) and Brian Fitzpatrick (R-PA). This bill would empower millions of people with disabilities to earn and save more money for their futures by increasing the asset limit.

Direct Support Professional Bill

The Bureau of Labor Statistics’ (BLS) Standard Occupational Classification (SOC) system lacks a code for DSPs, which makes it difficult to collect data and track DSP rates. The Recognizing the Role of Direct Support Professionals Act (S.1332) would take an important step toward the implementation of an SOC code. The original version was unanimously approved by a Senate Committee. Mandating the code would require the administration to consider this proposal when it updates the SOC system. The BLS website notes that a proposed update to the SOC system is likely to be introduced in 2024. Advocates have sent a letter to Senate leadership in support of this legislation.

Major Updates Proposed to Section 504

On September 14, The Department of Health and Human Services (HHS) published a major proposal to update its Section 504 of the Rehabilitation Act of 1973 rules. Section 504 prohibits disability discrimination by recipients of federal funding.

The proposed rule covers a wide range of issues including:

  • Stopping discrimination in medical treatment,
  • Ensuring accessibility of medical equipment,
  • Eliminating discriminatory barriers in child welfare programs,
  • Clarifying obligations to provide services in integrated settings, and
  • Banning assessment tools that place a lower value of life on people with disabilities.

The proposed rule is open for comments through November 13, 2023. Learn more about the rule here.



Budget Update

Following months of negotiation, the legislature released a compromise budget on September 20th. Votes were held on the following two days and the budget was passed on September 22 and sent to the Governor’s Office. The Governor has indicated that he will allow the Budget to pass unsigned after 10 days of receiving it from the General Assembly.

Below are some highlights which affect people with I/DD and address the waiting list for Innovations, DSP wages, employment, and educational opportunities. While there are still great needs and we had hoped for a more robust response to the waiting list, the items below are a reflection of the education and advocacy efforts of NCCDD and our partners.

Innovations Waiver Direct Care Worker Wages Fund: Provides funds to increase the wages of direct care workers who provide services for individuals on the State's Innovations waiver. ($60,000,000 Recurring Funds)

Personal Care Services Rates: The Department of Health and Human Services, Division of Health Benefits, shall provide a rate of five dollars and ninety-six cents ($5.96) per 15-minute increment for personal care services provided to Medicaid beneficiaries through Medicaid Direct, Community Alternatives Program for Children (CAP/C), Community Alternatives Program for Disabled Adults (CAP/DA), and Community Alternatives Program Choice (CAP/CO).

Innovations Waiver Slots: Provides funding for an additional 350 individuals with intellectual and developmental disabilities to access services through the State's Innovations waiver program. ($10,000,000 Recurring Funds)

Competitive Integrated Employment: Provides funding to support competitive integrated employment through vocational rehabilitation services, day supports and community services for individuals with intellectual and developmental disabilities. ($5,000,000 Recurring Funds)

NC Psychiatry Access Line: Provides funds to maintain the North Carolina Psychiatry Access Line (NC-PAL), a telephone consultation service that connects providers with psychiatrists to advise on the behavioral health needs of patients, many of whom have IDD. NC-PAL operates in all 100 counties and helps to address the shortage of child psychiatrists in North Carolina. ($1,850,000. Recurring Funds)

North Carolina Assistive Technology Program: Provides funding to purchase equipment in order to maintain a statewide inventory of up-to-date assistive technology equipment to be used for assessment, training, and short- term equipment loans. ($400,000 Non-Recurring for 23/24 and 24/25)

Child Welfare and Family Well-Being: Provides supports to families caring for children with behavioral health or other special needs and strengthen available specialized behavioral health treatment options. (23/24 - 20,000,000 NR; 24/25 - $60,000,000 NR)

Career Pathways Support for Students with Intellectual Disabilities: Provides funds to create a regional support network that supports training and job opportunities for students with intellectual disabilities across the State. Funding provided for this purpose shall be used for the college, regional, and State- level infrastructures for the program, including a program director and technical assistance position at the Community College System Office (System Office). The System Office may also hire a part-time implementation coordinator with funds provided for this purpose. ($3,963,094 Recurring Funds)

Educational Opportunities Program: The Board of Governors of The University of North Carolina shall establish a College of Educational Opportunities Program for eligible students with intellectual and developmental disabilities. North Carolina State University shall develop and operate the Program beginning in the 2023-2024 fiscal year. North Carolina Central University shall adapt and operate the Program as developed by North Carolina State University for use beginning in the 2024-2025 fiscal year. ($3,000,000 Recurring NC State University beginning in 23/24; $3,000,000 Recurring NC Central University beginning in 24/25)

Vocational Rehabilitation Pilot Program: Creates a 3-year pilot program that will place vocational rehabilitation counselors in colleges to assist students with intellectual and developmental disabilities with their career-related goals. ($750,000 Non-Recurring)

Funding to the Division of MHDDSUS also included additional funding for several not-for-profits that support people with IDD including Special Olympics, Autism Society of NC, EasterSeals, UCP, The Arc of NC.

Medicaid Expansion

Passage of the budget also allows NC to move forward with Medicaid Expansion since it was tied to the budget. Governor Roy Cooper along with Secretary Kody Kinsley announced the new launch date for Medicaid Expansion in North Carolina. Medicaid Expansion will now start on December 1, 2023. 300,000 North Carolinians will be enrolled on day one. We estimate there are 600,000 people who will be eligible.

Guardianship Rights Bill Update

Thanks to the hard work and perseverance Senate Bill 615 has been passed and sent to the Governor.

An act to allow adult adoptees to be adopted by a former stepparent, the removal of certain redaction restrictions from adoption home studies, and the expansion of acknowledgment options for agency relinquishments for adoption, to make clarifying corrections to the notary laws, to update the guardianship accounting statute to allow for certain timing elections and extensions, to amend the general statutes to prevent the abuse or misuse of authority granted to an agent in a power of attorney, and to promote the rights and independence of persons subject to the guardianship process and to improve judicial oversight and accountability for guardians of the person.

NCCDD Celebrates Hispanic Heritage Month!

By Irlanda Ruiz, NCCDD Hispanic Disability Advocate

El NCCDD reconoce que la población hispana con discapacidad intelectual y en el desarrollo ha ido en aumento en el Estado. Esta población enfrenta retos únicos y requiere del apoyo tanto de la comunidad como de organizaciones públicas y privadas.

Para poder servir de manera adecuada a la población latina con discapacidad intelectual o del desarrollo en nuestra área el NCCDD cuenta con una Defensora Hispana de la Discapacidad, Irlanda Ruiz.

La Defensora, tiene como norte ser parte de la solución de los problemas que enfrenta la comunidad. Para esto llevará a cabo actividades de divulgación, reuniones y eventos educativos, entre otras entre otras tareas para asegurar que la comunidad latina con I/DD conozca que es el NCCDD, el plan quinquenal en beneficio de la población con discapacidad, así como sus derechos.

Si usted es una persona con discapacidad intelectual o en el desarrollo y quiere tener más información favor de comunicarse con Irlanda Ruiz vía correo electrónico a [email protected] o llame al 984-920-8215.

NCCDD en las Noticias

Univisión llevó a cabo una entrevista en español, con la nueva Defensora Hispana de la Discapacidad Irlanda Ruiz sobre el NCCDD. Aquí pueden acceder a la entrevista http://uni.vi/6kEf104Tl7K

NCCDD en la comunidad 

EL NCCDD participó del Festival Comunitario Multicultural efectuado el pasado sábado 16 de septiembre de 2023, en Charlotte, Carolina del Norte, auspiciado por la Iglesia Metodista Unida de Hickory Grove.

A través del exhibidor de NCCDD, tuvo la oportunidad de compartir información con la comunidad en español e inglés sobre que es el NCCDD, las metas del NCCDD, el plan quinquenal, así como contactar a la nueva Defensora Hispana de la Discapacidad.

El Festival contó con exhibidores, comida de varios países, baile y música en honor al mes de la herencia hispana.

¡Celebre el Mes Nacional de Concientización Hispana!

¡Únase a nosotros para celebrar el Mes Nacional de la Herencia Hispana! Esta celebración se lleva a cabo anualmente del 15 de septiembre al 15 de octubre. Durante este tiempo, proporcionaremos artículos semanales para crear conciencia sobre las personas que son hispanas y tienen discapacidades intelectuales u otras discapacidades del desarrollo. Los artículos se encuentran en nuestro blog de temas candentes.

English translation:

NCCDD recognizes that the Hispanic population with intellectual and developmental disabilities has been increasing in the state. This population faces unique challenges and requires the support of both the community and public and private organizations.

To adequately serve the Latino population with intellectual or developmental disabilities in our area, NCCDD has a Hispanic Disability Advocate, Irlanda Ruiz.

The Hispanic Disability Advocate aims to be part of the solution to the problems faced by the community. For this, Irlanda will carry out outreach activities, meetings, and educational events, among other tasks to ensure that the Latino community with I/DD knows what the NCCDD is, the five-year plan for the benefit of the population with disabilities, as well as their rights.

If you are a person with intellectual or developmental disabilities and would like more information, please contact Irlanda Ruiz via email at [email protected] or call 984-920-8215.

NCCDD in the News

Univision conducted an interview in Espanol with our new Hispanic Disability Advocate, Irlanda Ruiz about the NCCDD. Here you can access the interview: http://uni.vi/6kEf104Tl7K

NCCDD in the Community

The NCCDD participated in the Multicultural Community Festival held last Saturday, September 16, 2023, in Charlotte, North Carolina, hosted by the Hickory Grove United Methodist Church.

Through the NCCDD exhibitor, we had the opportunity to share information in Spanish and English about what the NCCDD is, the NCCDD goals, the five-year plan, as well as contact the new Hispanic Disability Advocate.

The festival featured exhibitors, food from various countries, dance, and music in honor of Hispanic Heritage Month.

Celebrate National Hispanic Awareness Month!

Join us in celebrating National Hispanic Heritage Month! This celebration takes place annually from September 15 through October 15. During this time, we will provide weekly articles to raise awareness and the individuals who are Hispanic and have intellectual or other developmental disabilities. Articles are found in our Hot Topics Blog.

Self-Advocate Discussion Series: National Disability Employment Awareness Month

October is National Disability Employment Awareness Month (NDEAM), a time to celebrate the contributions of America’s workers with disabilities and showcase supportive, inclusive employment policies and practices that benefit employers and employees. Join the next Self-Advocate Discussion Series on Wednesday, October 18 from 1 to 2pm to celebrate NDEAM and share your story and hear from others about their employment experiences.

Facilitated by Chris Hendricks, NCCDD Policy Education Coordinator and NCCDD self-advocate members, this series 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! 

Please join us on Wednesday, October 18 from 1 to 2pm. Register here.

And be sure to view the video recordings of previous Self-Advocate Discussion Series webinars on our YouTube channel!

REVUP to Register, Educate, Vote, Use your Power!

People with disabilities are a large part of the population, and exist in every political party and demographic. The disability vote has the power to create a more inclusive and accessible democracy. According to the American Association of People with Disabilities (AAPD), only 17.7 million of the over 38 million eligible voters with disabilities participated in the 2020 elections. If people with disabilities voted at the same rate as nondisabled voters, there would be about 2 million more voters!

In 2022, there was an increase in turnout of voters with disabilities, but the turnout rate was still lower than voters without disabilities. This turnout gap is in large part due to systemic barriers that keep people with disabilities from accessing their right to vote. Through AAPD’s REV UP Voting Campaign! (REVUP stands for Register, Educate, Vote, Use your Power!), people are encouraged to join in helping close the turnout gap and make a difference in state, local, tribal, and national elections through an annual Disability Voter Rights Week (DVRW) campaign. This year it was held during the week of September 11th.  

When most people think about voting, they usually think about voting for the president of the United States. Elections for president happen every four years and they are important. But, there are elections every year and we believe that ALL elections are important. For example, an election for a local school board can affect how much money schools in your area get for special programming needs. Elections for state representatives can affect how certain programs like Medicaid and Medicare work. Even though Medicaid and Medicare have federal funding, state officials have power. With that in mind, although the week-long DVRW campaign is over, we encourage you to continue to spread awareness throughout the year by using the free tools provided during the DVRW campaign.

En Español - septiembre 2023

septiembre 2023

Audio - Highlights and Hot Topics 

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North Carolina Council on Developmental Disabilities

Office Hours: 9AM-4PM Monday-Friday
1-800-357-6916 (Toll Free)
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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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