August 2024 Highlights and Hot Topics
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- Message from the Executive Director
- Public Policy Update (as of 8/22/24)
- Free Online Courses on Transition and Lifespan Planning Offered by Life Course Library
- September Self-Advocate Discussion Series: Update on the Unmet Needs/DSP Crisis in NC
- Hispanic Disability Outreach: Understanding and Eliminating the Stigma of Intellectual or other Developmental Disabilities
- Get Ready to Celebrate Direct Support Professional (DSP) Recognition Week!
- Boletín en español
- Newsletter in Accessible Audio
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Message from the Executive Director
Talley Wells
NCCDD Executive Director
An awesome, amazing earthquake of change is happening at many of our colleges and community colleges in North Carolina. They are creating exciting opportunities for adults with intellectual and other developmental disabilities (I/DD) through Inclusive Post-Secondary Education (IPSE) programs. My only hesitation in writing this article is that I will not be able to name all the programs that exist or that are in development across the state.
Colleges and community colleges not only prepare students for their future vocations but also to live more independently and to make friends and connections that can last a lifetime. For too long, these opportunities were limited for adults with intellectual disabilities. People with other disabilities have confronted challenges with accessibility and personal supports.
North Carolina began having IPSE programs in 2006 at Western Carolina, Appalachian State and UNC Greensboro. These programs will now be joined by many more.
Access to Achievement is a legislatively created initiative that is funding 15 community colleges across the state to have an “Access to Achievement Coordinator.” These coordinators will help foster support for individuals with I/DD to enable community colleges to support vocational training for individuals with I/DD. Additionally, the Employment and Independence for People with Disabilities (EIPD, formerly Vocational Rehabilitation or VR) will collaborate with six of the sites. The following community colleges have received funding for Access to Achievement:
- Asheville-Buncombe Technical Community College
- Alamance Community College
- Brunswick Community College
- Catawba Valley Community College
- College of the Albemarle
- Guilford Technical Community College
- James Sprunt Community College
- Johnston Community College
- McDowell Technical Community College
- Richmond Community College
- Robeson Community College
- Sandhills Community College
- South Piedmont Community College
- Stanly Community College
- Wilkes Community College
Applications are now open at North Carolina State University, which will begin its first cohort of an IPSE this January. UNC Chapel Hill will expand its HEELS UP Summer Program into the academic year in 2025. Programs are also in development at the University of North Carolina Wilmington and North Carolina Central University.
The North Carolina Council on Developmental Disabilities is releasing a Request for Applications for an IPSE to be developed at a Historically Black College or University (HBCU). This will add to the programs that already exist at other colleges and universities across the state. Check out all the IPSEs in North Carolina.
Public Policy Update (as of 8/22/24)
STATE
Legislative
The NC Legislature ended the Short Session in June and plans to reconvene monthly through the end of year. The House and Senate were not able to come to an agreement on the budget bill, so the session ended without an Omnibus Budget Adjustments Act.
The monthly sessions will address legislative issues, such as veto overrides, and could possibly address additional budget adjustments. Below is the schedule of planned legislative sessions:
- Monday, September 9, 2024, at 12 p.m.
- Wednesday, October 9, 2024, at 12 p.m.
- Tuesday, November 19, 2024, at 12 p.m.
- Wednesday, December 11, 2024, at 12 p.m.
The 2023 Regular Session will officially adjourn on December 13, 2024.
We are looking forward to the Long Session which will begin in early January. This will be an opportunity to focus on priorities such as the wait list for services and increase in wages for direct support professionals.
1915(i) Services
The Medicaid 1915(i) services began in July. These services are Home and Community Based Services that replace services for those who were receiving b(3) services. 1915(i) also provides new HCBS services for others who have behavioral health needs, developmental disabilities, and TBI.
The organization where an individual receives Targeted Case Management is responsible for completing an independent assessment, transmitting the assessment to confirm eligibility, completing a Care Plan/Individual Service Plan, and gaining authorization for services from the Tailored Plan.
FEDERAL
Budget
The Federal Fiscal Year is October – September. The House has worked on funding bills that include legislation that would provide $185.8 billion in funding for the departments of Labor, Health and Human Services, and Education in fiscal year 2025, an 11% cut below the prior fiscal year. This House bill contains massive overall cuts compared to last year, but level-funds many programs in the Administration for Community Living including the University Centers for Excellence in Developmental Disabilities (UCEDD), and in the Health Resources and Services Administration (HRSA), the Leadership Education in Neurodevelopmental Disabilities (LEND) Program.
The Senate has not done as much work on their budget bills and Congress is on recess until September 8. The current federal budget was done six months late, and the 2025 budget timeline is now looking to stretch past its September 30 deadline.
If a federal budget is not passed by September 30, lawmakers will need to pass an emergency extension to avoid a shutdown. That is looking increasingly likely to last until after the election, when both the House and Senate could see a shift in the balance of power.
Autism CARES Act
The Autism CARES Act law is set to expire. Activities funded under the measure known as the Autism Collaboration, Accountability, Research, Education and Support, or Autism CARES Act will come to an end if the law is not extended by September 30.
The measure, which originated in 2006, allocates federal dollars for research, prevalence tracking, screening, professional training and other government activities related to autism.
The Autism CARES Act of 2024 has been approved by committees in the U.S. Senate and the House of Representatives, but it has yet to progress further in either chamber despite broad bipartisan support. Advocates are working to ensure that the House and Senate work collaboratively to reauthorize the Autism CARES Act before the September 30 deadline.
Feds To Enforce Accessibility Standards for Medical Equipment
The U.S. Department of Justice is finalizing a new rule aimed at dramatically increasing the availability of medical examination tables, weight scales and other diagnostic equipment that’s accessible to people with disabilities. Federal officials said late last week that they would implement a regulation under Title II of the Americans with Disabilities Act adopting technical standards that must be met by certain hospitals and health care clinics.
The rule was proposed earlier this year after numerous complaints that the Justice Department said it received from people with disabilities who have been denied basic medical services because of a lack of accessible equipment.
Free Online Courses on Transition and Lifespan Planning Offered by Life Course Library
Transitioning from high school to adulthood is a challenge for most everyone, including Autistic individuals. Questions like, “What happens next?” and “What can I do to prepare?” and “What do I want to do?” are just a few things to consider.
Autism Grown Up is paving the way to helping Autistic individuals navigate the transition process through its new Life Course Library. Developed with funding support from the North Carolina Council on Developmental Disabilities (NCCDD), the Life Course Library aims to provide resources and tools to help prepare for life after high school and navigate adulthood. The online courses are available on demand and are FREE!
“The Life Course Library is a free digital library of lessons addressing topics pertaining to employment, education, community living, and services,” said Dr. Tara Regan, executive director of Autism Grown Up. “The Library equips Autistic individuals across all life stages with the tools they need to navigate transition and lifespan planning.”
Currently, two courses – “Foundation to Transition Planning” and “Preparing for Life After High School” – are available on the Life Course Library website. A third course, “Navigating Adulthood,” will be available soon.
The courses are built to evolve with individuals as they progress through different life stages. Dr. Regan explained, “The Life Course Library will provide answers to common questions and concerns and establish guidance around what to expect in these life stages.”
Activities will be designed to increase knowledge around transition and lifespan planning, specifically how individuals want to take part in decisions that affect their lives, communities, and systems.
Historically, many transition resources have been geared toward parents or professionals, often overlooking the direct needs and choices of Autistic individuals. “The Life Course Library puts the person with autism in the driver’s seat,” said Dr. Regan. This goes along with the growing recognition that Autistic individuals should be at the center of their own planning and decision-making processes.
Collaborative and Inclusive Development
Dr. Regan said they have an extensive review process, coordinating with their review group made up of self-advocates, teachers, and family members. They go through the course and provide thorough feedback on accessibility and practicality.
“The courses will also be helpful and informative for families and professionals who wish to work collaboratively with an Autistic individual they are supporting,” said Dr. Regan. “Our aim in including professionals and families is to reach as many Autistic individuals as possible.”
Empowerment and Impact
The Life Course Library takes a holistic approach to education, with each course organized into these three key categories: needs assessment, strategies, and next steps.
“Each participant identifies what is important to them relevant to a given topic area, selects their own goals, practices decision-making, and tracks their progress,” said Dr. Regan. “By offering a framework for preparing for these transition periods ahead of time, our goal is to offer individuals with autism tools that help them feel better prepared to navigate the challenges related to employment, advocacy, and community access.”
NCCDD System Change Manager Philip Woodward added, “If someone out there with autism takes these courses or their family members take these courses and learn something that helps them with their situation in life, then our initiative is making an impact.”
Take the Free, Online Courses Today!
For more information and to take the courses, visit the Life Course Library website.
September Self-Advocate Discussion Series: Update on the Unmet Needs/DSP Crisis in NC
There are 17,902 people of the Registry of Unmet Needs (the waiting list for the Innovations Waiver) for people with intellectual and other developmental disabilities in North Carolina. At the same time, those who received services also had unmet needs because of too few direct support professionals (DSP).
Join us on Wednesday, September 18, 2024 from 1 to 2PM to hear from policy experts on where things stand over one-year later. We’ll hear an update about the waiting list and the DSP crisis, and hear from the lived experiences of advocates with intellectual or other developmental disabilities (I/DD) and others who are still waiting.
Register today!
NCCDD's Self-Advocate Discussion Series is held on the third Wednesday of each month at 1 PM. 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. You can view video recordings of previous Self-Advocate Discussion Series webinars on our YouTube channel.
Hispanic Disability Outreach: Understanding and Eliminating the Stigma of Intellectual or other Developmental Disabilities
What is an intellectual or other developmental disability?
An intellectual or other developmental disability (I/DD) is a condition that can affect how a person learns, communicates, moves, or becomes independent. Common examples include Down syndrome, autism, and cerebral palsy.
How does stigma impact?
Stigma means prejudice or discrimination. Often, people with I/DD and their families face this stigma, which can make them feel isolated or have fewer opportunities in school, work, or the community.
Stigma can also appear within the family. Families may feel shame or guilt, leading to overprotection or even distancing from the person with I/DD. In turn, people with I/DD may feel bad about themselves and avoid seeking help or new opportunities.
How can we eliminate stigma?
- Education and Awareness: Learning more about disabilities can help change how people think and act.
- Respectful Language: Using words that respect the person is important. For example, saying “person with a disability” instead of “disabled person.”
- Visibility: Showing positive examples of people with I/DD on TV, the internet, and other media helps change public perception.
- Family Support: Families also need support to understand and manage the challenges of having a loved one with I/DD.
- Inclusive Policies: Laws and policies should ensure that people with I/DD have the same opportunities in education, work, and the community.
Support from NCCDD
The North Carolina Council on Developmental Disabilities (NCCDD) works to ensure that people with I/DD and their families live independently and are active members of their community. The Council also works to eliminate discrimination and injustice for people with disabilities.
Eliminating stigma is everyone’s task. By promoting education, respect, and inclusion, and supporting organizations like NCCDD, we can build a fairer and more equitable society for people with I/DD and their families.
En español
¿Qué es la Discapacidad Intelectual y en el Desarrollo?
La discapacidad intelectual y en el desarrollo (IDD) es una condición que puede afectar cómo una persona aprende, se comunica, se mueve o se vuelve independiente. Ejemplos comunes son el síndrome de Down, el autismo y perlesía cerebral.
¿Cómo Impacta el Estigma?
El estigma significa prejuicio o discriminación. Muchas veces, las personas con IDD y sus familias enfrentan este estigma, lo que puede hacer que se sientan aislados o tengan menos oportunidades en la escuela, el trabajo o la comunidad.
El estigma también puede aparecer dentro de la familia. Las familias pueden sentir vergüenza o culpa, lo que puede llevar a sobreproteger o incluso a alejarse de la persona con IDD. A su vez, las personas con discapacidad pueden sentirse mal consigo mismas y evitar buscar ayuda o nuevas oportunidades.
¿Cómo Podemos Eliminar el Estigma?
- Educación y Concienciación: Aprender más sobre las discapacidades puede ayudar a cambiar la forma en que las personas piensan y actúan.
- Lenguaje Respetuoso: Usar palabras que respeten a la persona es importante. Por ejemplo, decir "persona con discapacidad" en lugar de "discapacitado".
- Visibilidad: Mostrar ejemplos positivos de personas con IDD en la televisión, internet y otros medios ayuda a cambiar la percepción pública.
- Apoyo a las Familias: Las familias también necesitan apoyo para entender y manejar los desafíos de tener un ser querido con IDD.
- Políticas Inclusivas: Las leyes y políticas deben garantizar que las personas con IDD tengan las mismas oportunidades en la educación, el trabajo y la comunidad.
El Apoyo del NCCDD
El Consejo de Carolina del Norte sobre Discapacidades del Desarrollo (NCCDD) trabaja para que las personas con IDD y sus familias vivan con independencia y sean parte activa de su comunidad. El Consejo además trabaja para eliminar el discrimen y las injusticias relacionadas a las personas con discapacidad.
Eliminar el estigma es una tarea de todos. Si promovemos la educación, el respeto y la inclusión, y apoyamos organizaciones como el NCCDD, podemos construir una sociedad más justa y equitativa para las personas con IDD y sus familias.
Get Ready to Celebrate Direct Support Professional (DSP) Recognition Week!
Direct Support Professional (DSP) Recognition Week will be celebrated September 8-14, 2024. It’s a time set aside to pause, acknowledge, and highlight the dedicated DSPs who are the heart and soul of supports for people with intellectual and other developmental disabilities to live independent lives in the community of their choice.
Take some time during DSP Recognition Week to let your DSPs know how much you appreciate them! Here are some ideas:
Send a note of appreciation. Whether it’s a hand-written card, an email, a letter, or a picture, hearing directly from you lets them know how important they are to you. If your DSP works for an agency, send a note to their supervisor, too, so that they know how much you appreciate your DSP.
Give a shout-out on social media. Share what the DSPs in your life have meant to you, your family, or your loved one and the importance of their dedication to helping others.
Gift them with food. Whether it’s home baked cookies, a restaurant gift card, or having a pizza party, food is always a great way to celebrate with your DSP.
Create or purchase a small gift. Are you good at arts and crafts? If so, make something special for your DSP. Or buy a small gift for them.
Simply tell them “thank you.” Just letting them know that you care and appreciate them is one of the best gifts of all.
