April 2024 Highlights and Hot Topics
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- Message from the Executive Director
- Public Policy Update (as of 4/22/24)
- NCCDD to Host I/DD Town Hall in Charlotte on May 2, 2024
- Questions about Voting? "Voter Safety + Protection" has Answers!
- May Self-Advocate Discussion Series: Healthy Relationships
- Hispanic Disability Outreach: World Autism Acceptance Day
- En Español - abril 2024
- Audio - Highlights and Hot Topics
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Message from the Executive Director
Talley Wells
NCCDD Executive DirectorAre we ready for 2025? I hate to ask this in April 2024, but it is already time to think about incoming leadership in 2025 and whether they will prioritize intellectual or other developmental disabilities (I/DD).
Right now, we have candidates for Governor and the General Assembly who are seeking your vote. They want to meet you. Have you reached out to them? Have you told them your story? Do you know them?
The next Governor and legislative leaders will chart the course for I/DD in North Carolina. They will decide whether the state shortens the waiting list and provides enough funding for Direct Support Professionals. The great news is that our community has champions across the political spectrum. The bad news is too few individuals with I/DD and family members have taken the time to meet the candidates and leaders.
The North Carolina Council on Developmental Disabilities, Meet The Need NC, and our partners are beginning to host more opportunities to engage with our state leaders. Take advantage of these opportunities. But do more than that. Reach out to your legislative leaders. Reach out to the candidates. Let them know your stories and the issues that are important to you.
As part of this, North Carolina and NC Department of Health and Human Services (DHHS) recently reached a two-year agreement in the Samantha R litigation on services for people with I/DD. That agreement is important, but it is up to us to make sure our leaders support and implement the critical steps it will take to move forward on these issues. Make sure to listen to the webinars coming up about the agreement.
Please join us online for our Developmental Disabilities Townhall on May 2nd. It will be with DMH/DD/SUS Director Kelly Crosbie, I/DD TBI Olmstead Director Ginger Yarbrough, Senator Jim Burgin and Representatives John Bradford, Wayne Sasser, Terry Brown, and Carla Cunningham. But don’t stop there. Meet all of your candidates and leaders. It is time to be ready for 2025!
Public Policy Update (as of 4/22/24)
FEDERAL UPDATE
Budget
Current Budget: Halfway through the federal fiscal year, and after a series of continuing resolutions to keep government programs running, a funding package was signed by the President on March 23. A $1.2 trillion deal to fund the federal government through September includes more money for special education and employment for people with disabilties, but many other programs benefiting people with disabilities did not see an increase. Notably, the spending plan features $14.2 billion in funding for state grants under the Individuals with Disabilities Education Act (IDEA), a $20 million increase over last year. And, vocational rehabilitation will see a $304 million boost, bringing the program to $4.25 billion.
However, home and community-based supportive (HCBS) services, state developmental disabilities councils, protection and advocacy agencies and many other programs that people with disabilities rely on will see level funding. While level funding does not account for inflation, and advocates hoped for increases, it was a relief for many that there were no cuts in these areas. Work on next year’s budget is already underway and these will be areas of advocacy.
Next Year Budget: President Biden used his State of the Union address in March to urge Congress to add funding for Medicaid HCBS. The president followed up by including $150 billion over 10 years “to strengthen and expand Medicaid home and community-based services” in his budget request for the 2025 fiscal year, which begins in October.
Beyond requesting more investment in HCBS, Biden’s budget includes a $200 million increase in spending on special education services, $10 million more to train special educators and early intervention providers as well as funding to improve customer service at the Social Security Administration.
This budget request highlights the president’s priorities but is only the first step in the federal budget process. It is now up to Congress to determine what will ultimately be included in the federal budget for the upcoming year.
Recognizing the Role of Direct Support Professionals Act
This bill (S. 1332) was introduced by Senator Collins (R-ME) and Senator Hassan (D-NH) in April 2023 and passed by the Senate in March 2024. It will help address the need for more Direct Support Professionals in the workforce by ensuring that the government collects more data on the people who help people with disabilities every day. This bill has been sent to the House, where there was a similar bill introduced last April, for consideration.
Supplemental Security Income (SSI) Updates
In a rule published in March, the Social Security Administration said it will stop considering food expenses in calculations of in-kind support and maintenance as of September 30. The agency said that starting this fall it will no longer factor food when determining what’s known as “in-kind support and maintenance.”
The change will limit the amount of information that SSI beneficiaries must report, ensure that rules are easier for everyone to understand and reduce variability in SSI payments from one month to the next.
The agency will continue to factor shelter expenses meaning that SSI benefits can be docked if a beneficiary does not contribute to rent, mortgage or utility costs for their residence. However, some changes to the rental subsidy policy also occurred.
On April 11, the Social Security Administration published a final rule, “Expansion of the Rental Subsidy Policy for Supplemental Security Income (SSI) Applicants and Recipients.” Under the final rule, beginning September 30, 2024, the agency will expand its SSI rental subsidy policy, which due to judicial decisions is currently only in place for SSI applicants and recipients residing in seven States (Connecticut, Illinois, Indiana, New York, Texas, Vermont, and Wisconsin). In those states, rental assistance, such as renting at a discounted rate, was less likely to affect a person’s SSI eligibility or payment amount. This new rule extends the same advantageous policy to all SSI applicants and recipients nationwide. This may increase the benefit amount some people are eligible to receive and will allow more people to qualify for critical SSI payments.
Proposed Rule to Ban Electrical Stimulation Devices
In an advocacy effort we have been following for a few years, the Food and Drug Administration (FDA) announced a proposed regulation that would ban the use of electrical stimulation devices that are used to treat self-injurious or aggressive behaviors. Currently, it is legal to use these devices on children and adults to "modify their behavior.” At this time, the FDA has information that indicates only one facility is using these devices in the United States, the Judge Rotenberg Educational Center (JRC) in Canton, Massachusetts, and estimates between 45 and 50 individuals are currently being exposed to the device.
The FDA tried to ban these devices in 2020 but their decision was challenged in court where the court determined that the FDA did not have the authority to ban them. Since that decision, changes to the Federal Food, Drug, and Cosmetic Act made it clear that the FDA does have authority to issue this ban.
The proposed rule is available online at www.regulations.gov for public comment through May 28.
Autism Acceptance
For the first time, President Joe Biden used a proclamation on April 2nd to designate World Autism Acceptance Day. In previous years, the date had been called World Autism Awareness Day.
The language change is the result of advocacy. The movement toward autism “acceptance” first emerged as a grassroots effort in 2011 spearheaded by Paula Durbin-Westby, a self-advocate who created a Facebook event titled Autism Acceptance Day.
STATE
Legislative
Legislative short session will begin April 24, 2024. The short session is designed primarily for review and adjustments to the two-year budget that was approved last session. With the elections coming up, the expectation is that this session will be quick. One critical area of focus for I/DD advocates is to increase the funding allocated last session for direct support professional wage increases. As a reminder, $60 million was included in the budget which fell short of the $90 million needed to achieve the targeted increases. Continuing education and advocacy around the waitlist, housing, transportation and other areas of need are critical. Even if there is limited opportunity for action this session, information and education will help set the stage for further work in the long session.
Tailored Plan
After completing readiness reviews with the four Local Management Entities (LMEs) – Alliance Health, Partners Health Management, Trillium Health Resources and Vaya Health moving with Tailored Plan – the Department of Health and Human Services (DHHS) determined that they are ready to move ahead with implementation of the Tailored Plans beginning on July 1, 2024. As a reminder, these plans will cover doctor visits, prescription drugs and services for mental health, substance use, I/DD and traumatic brain injury in one plan.
Letters were mailed in mid-April to anyone moving to a Tailored Plan. Tailored Plan beneficiaries will be able to choose a primary care provider (PCP) between April 15 and May 15. If a person does not choose a PCP by May 15, the Tailored Plan will assign one to the person. People can change their PCP through Jan 31, 2025. Member ID Cards and welcome packets will be sent at the end of May.
While the goal is to have very little to no disruption in primary care providers, the readiness reviews indicated that between 5% and 9% of people enrolled in the Tailored Plan will not be able to keep their current PCP. There also continues to be concern about access to specialty care providers.
NCCDD to Host I/DD Town Hall in Charlotte on May 2, 2024
The North Carolina Council on Developmental Disabilities (NCCDD) will host I/DD Town Hall: Key Priorities for Developmental Disabilities in North Carolina on May 2, 2024 at 6:30 PM in Charlotte, NC at the DoubleTree by Hilton Charlotte Airport. The event will also be held online via Zoom.
The town hall will feature leaders and lawmakers who are excited to meet and learn from individuals and families in Charlotte.
NCCDD is excited to welcome:
- Kelly Crosbie, Director, DMH/DD/SUS
- Ginger Yarbrough, I/DD, TBI & Olmstead Director, DMH/DD/SUS
- Rep. Carla Cunningham, (District 106 - Mecklenburg)
- Rep. John Bradford (District 98 - Mecklenburg)
- Rep. Terry Brown (District 92 - Mecklenburg)
- Senator Jim Burgin (District 12 - Harnett, Lee, Sampson)
- Rep. Wayne Sasser (District 67 - Montgomery, Stanly)
Spanish translations, CART, and American Sign Language will be available.
Register today!
En español
El Consejo de Discapacidades del Desarrollo de Carolina del Norte llevará a cabo la Foro Pública: Prioridades clave para las discapacidades del desarrollo en Carolina del Norte, el 2 de mayo a las 6:30 p.m. en Charlotte, Carolina del Norte, en el Hotel DoubleTree by Hilton Charlotte Airport. El evento también se llevará a cabo en línea a través de Zoom.
La foro pública contará con líderes y legisladores que están entusiasmados en conocer y aprender de las personas y familias de Charlotte.
El Consejo de Discapacidad en el Desarrollo se complace en dar la bienvenida a:
Kelly Crosbie, Directora, DMH/DD/SUS
Ginger Yarbrough, I/DD, TBI y Jefa de Sección de Olmstead, DMH/DD/SUS Representante John Bradford (Distrito 98 - Mecklenburg)
Representante Terry Brown (Distrito 92 - Mecklenburg)
... ¡Y más!
Estarán disponibles traducciones al español, CART y lenguaje de señas americano.
Questions About Voting? "Voter Safety + Protection" has Answers!
Do you have questions on how to prepare to vote? Voter Safety + Protection offers assistance online and by phone for North Carolina voters!
The Voter Safety + Protection campaign was launched in 2020 by the North Carolina Black Alliance in partnership with Disability Rights North Carolina and Equality North Carolina to provide credible election information, personal protection equipment (PPE), and voter resources for North Carolinians. They developed a website that offers up-to-date fact sheets, tool kits, checklists, and more to help you learn about your voter rights and answer your questions. They also offer a hotline you can call to talk directly with experts!
Why is it important to prepare to vote? Here are some questions to think about:
- Are you registered? Even if you think you are registered, it’s important to make sure your registration is active and your address and other personal information are up-to-date.
- Do you have an acceptable form of identification (ID) to vote?
- Do you need help with completing an absentee ballot?
- How can you vote early in person or by mail?
- Do you need a ride to your voting poll location?
Call the hotline at 1-888-WEVOTE2 (1-888-938-6832) or visit the Voter Safety + Protection website to find answers to these questions or more. It’s important to be prepared to vote so YOUR voice will be heard!
May Self-Advocate Discussion Series: Healthy Relationships
Relationships with other people are one of the most meaningful parts of life. That is what the May Self-Advocate Discussion Series will talk about on May 15, 2024. You will learn about developing and maintaining healthy relationships and ending the unhealthy ones. Join us at 1 PM for this special hour and a half as Katherine McLaughlin, Elevatus CEO, Founder and Trainer provides training and guides conversation around important things to think about in relationships.
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 here.You can view video recordings of previous Self-Advocate Discussion Series webinars on our YouTube channel.
Hispanic Disability Outreach: World Autism Acceptence Day
La Asamblea General de las Naciones Unidas ha designado el 2 de abril como el Día Mundial de la Aceptación del Autismo, marcando abril como un mes clave para fomentar la comprensión y el apoyo hacia las personas con Trastornos del Espectro Autista (TEA).
Según el Centro para el Control y Prevención de Enfermedades (CDC), los TEA son discapacidades del desarrollo neurológico, originadas por variaciones en el cerebro. Estas condiciones persisten en la edad adulta y se caracterizan por desafíos en la comunicación, la interacción social y la presencia de comportamientos repetitivos. Los síntomas de los TEA pueden ser muy diversos, y en muchos casos, los adultos con autismo enfrentan obstáculos notables, especialmente en las relaciones sociales y en el ámbito laboral.
Según los Centros para el Control y la Prevención de Enfermedades (CDC), se ha identificado que un 3.2 % de los niños en la población hispana de 8 años o más presentan trastornos del espectro autista (TEA). Estos datos provienen de un análisis publicado en el Informe Semanal de Morbilidad y Mortalidad (MMWR).
La Red de Autodefensa del Autismo es una organización de defensores del autismo. Prefieren el término autista. Tienen una página que habla Sobre el autismo. Dice:
No hay una sola manera de ser autista. Algunas personas autistas pueden hablar, y algunas personas autistas necesitan comunicarse de otras maneras. Algunas personas autistas también tienen discapacidades intelectuales, y algunas personas autistas no. . . . . Cada persona autista experimenta el autismo de manera diferente, pero hay algunas cosas que muchos de nosotros tenemos en común.
- Pensamos diferente.
- Procesamos nuestros sentidos de manera diferente.
- Nos movemos de manera diferente.
- Nos comunicamos de manera diferente.
- Socializamos de manera diferente.
- Es posible que necesitemos ayuda con la vida diaria.
Las personas con autismo y sus familias pueden acceder a servicios, apoyos y terapias a través de LME/MCO/Tailored Plan o el Plan de Salud Estándar.
Es crucial que las personas con autismo y sus familias estén informadas sobre sus derechos y cómo acceder a los servicios necesarios. Aunque la concienciación sobre el autismo se destaca en abril, es importante recordar que los síntomas y desafíos asociados con el TEA son una realidad constante en la vida de quienes lo experimentan.
Para información adicional sobre recursos acceda la página web de IDD del DHHS de Carolina del Norte en el : https://www.ncdhhs.gov/divisions/mental-health-developmental-disabilities-and-substance-use-services/intellectual-and-developmental-disabilities una vez en la página, vaya a Select Language y seleccione español. Además, el Consejo de Discapacidad en el Desarrollo de Carolina del Norte tiene una Defensora Hispana de la Discapacidad, Irlanda Ruiz. Puede comunicarse con ella en [email protected] o llamar al 984-920-8215 para obtener ayuda en español.
In English:
The United Nations General Assembly has designated April 2, 2024, as World Autism Acceptance Day. This makes April a key month to promote understanding and support for people with autism spectrum disorders (ASDs).
According to the Centers for Disease Control and Prevention (CDC), ASDs are neurodevelopmental disabilities caused by variations in the brain. These conditions persist into adulthood and may impact communication, social interaction, and the presence of repetitive behaviors. The symptoms of ASD can be diverse and individuals with ASD may interact differently in social situations and relationships than others.
The CDC reports that 3.2% of children in the Hispanic population aged 8 years and older have ASD. This data comes from an analysis published in the Morbidity and Mortality Weekly Report.
The Autism Self-Advocacy Network is an organization of advocates with autism. They prefer the term autistic. They have a page on their website, About Autism, that says:
There is no one way to be autistic. Some autistic people can speak, and some autistic people need to communicate in other ways. Some autistic people also have intellectual disabilities, and some autistic people don’t. ... Every autistic person experiences autism differently, but there are some things that many of us have in common.
- We think differently.
- We process our senses differently.
- We move differently.
- We communicate differently.
- We socialize differently.
- We might need help with daily living.
Individuals with autism and their families may be able to access services, supports, and therapies through LME/MCO/Tailored Plan or the Standard Health Plan.
It is crucial that people with autism and their families are informed about their rights and how to access necessary services. It is also important to understand that many people with autism are proud of their autism and celebrate it. Although autism awareness is highlighted in April, it is important to be aware that ASD can be a significant part of the lives of those who experience it.
For additional resources and information, access the North Carolina Department of Health and Human Services (DHHS) Intellectual and Developmental Disabilities (I/DD) webpage at: https://www.ncdhhs.gov/divisions/mental-health-developmental-disabilities-and-substance-use-services/intellectual-and-developmental-disabilities. In addition, NCCDD has a Hispanic Disability Advocate, Irlanda Ruiz who you can reach her at [email protected] or call 984-920-8215 for assistance in Spanish.
