June 2024 Highlights and Hot Topics
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- Message from the Executive Director
- Public Policy Update (as of 6/21/24)
- NCCDD Chair Bryan Dooley Speaks at the White House Livestream Celebration of Olmstead
- Emergency Preparedness: Plan. Protect. Stay Informed!
- NCCDD Accepting Nominations for its Annual Advocacy and Leadership Awards
- July Self-Advocate Discussion Series: Let's Talk About the Americans with Disabilities Act!
- Hispanic Disability Outreach: What are Tailored Plans?
- En Español - mayo 2024
- Audio - Highlights and Hot Topics
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Message from the Executive Director
Talley Wells and Bryan Dooley prepare to leave for the White House for the 25th Anniversary of the Olmstead DecisionNorth Carolina Council on Developmental Disabilities (NCCDD) Chair Bryan Dooley spoke at the White House at its 25th Anniversary Celebration of the Olmstead Decision. His speech came at a critical moment for North Carolina and our country for disability rights and freedom. You can read more about the White House event in an article below.
Olmstead is the most important United States Supreme Court decision for people with disabilities. It is often compared to the Brown v. Board decision for the Olmstead community because the decision is about integration, desegregation, and discrimination. For too long, people with disabilities have had to live and work in institutions and facilities with others with disabilities without the freedom to make their own decisions and live independently. Justice Ginsburg in her majority opinion said that this was discrimination under the Americans with Disabilities Act.
Similar to the Brown decision, Olmstead is more than a legal case, it is a promise and a vision. Olmstead is a promise and vision that people with disabilities have the same inalienable right to life, liberty, and the pursuit of happiness of every other American. Unfortunately, the promise and vision are unfilled for too many in North Carolina.
I had three conversations in the last couple weeks about young adults with developmental disabilities for whom this promise is being denied. One young man is worried that there is no plan for how he can continue to live independently when his parents are no longer able to provide care. He already has lost some of his independence because he had to move with them for direct care and had to move away from friends and connections. Another individual is struggling to find direct care workers in order to be able to live independently. A third young man is stuck at home most days with nothing since he graduated from high school. He has the 1915(i) waiver and is starting to have a few activities, but he is really struggling since he left school.
We are making progress in North Carolina, but we still have a long way to go for too many. This election will matter. And it will matter not just in who is elected. It will also matter in whether we have spoken to the candidates, whether they know our stories, and whether they care about our issues. Now, is the time for us to work together with our leaders to fulfill the promise of Olmstead. Because that promise will make our country and our state better, and because it will enable each individual in our community to thrive!
Public Policy Update (as of 6/21/24)
FEDERAL
Budget
Congress is holding hearings and writing the appropriations bill as part of the federal process. The federal budget year begins October 1, 2024. The Labor-Health-Human Services-Education and Related Agencies (LHHS), which includes many of the funding streams that impact people with intellectual or other developmental disabilities (I/DD), is scheduled for mark-up on June 27 in the LHHS Subcommittee and scheduled for Appropriations Committee on July 10.
Legislation to Improve Accessibility of Higher Education
On May 21, Senator Casey (D-PA) introduced two bills that will make college more accessible for students with disabilities. The first bill is the Higher Education Grant Flexibility Act (S. 4379), which will let students with disabilities take less classes and still receive the same student loans as students without disabilities. Student loans are money that a person borrows to pay for their education. The second bill is the Expanding Disability Access to Higher Education Act (S. 4280), which will give money to programs that help prepare students with disabilities for college and their careers.
Autism Report
On May 29, the US Department of Health and Human Services (HHS) released the FY 2019-2023 Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Autism Collaboration, Accountability, Research, Education, and Support Act (Autism CARES Act) of 2019. This required report describes autism related activities across federal departments and agencies and includes information on the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs. Read the report here.
The Autism CARES act of 2024 (HR 7213) is in committee in the House. The bill must be reauthorized by September 30.
Final Rules
Section 504 of the Rehabilitation Act of 1973: The Department of Health and Human Services’ Office for Civil Rights finalized a rule that updates, clarifies, and strengthens HHS’ implementing regulation for Section 504 of the Rehabilitation Act of 1973. This is the first major update to HHS’ Section 504 regulations since they were first issued in 1977. Those historic regulations were issued after years of advocacy by disability rights advocates culminating in a 25-day sit-in at the Department of Health, Education, and Welfare regional office in San Francisco.
Some of the critical issues addressed in this rule include accessing medical care; information and communication technology, including web and mobile accessibility; accessible medical diagnostic equipment; and providing services in the most integrated setting appropriate to the person’s needs.
Section 1557 Nondiscrimination in Health Programs and Activities in Affordable Care Act: The Department of Health and Human Services released a final rule to strengthen civil rights protections in health care including accessible telehealth and health services in integrated community settings.
HHS Final Access Rule: On April 22, 2024, the Department of Health and Human Services, through the Centers for Medicare & Medicaid Services, released the Ensuring Access to Medicaid Services final rule (Access Rule) which creates national standards that will allow people enrolled in Medicaid to better access care when they need it and also strengthens home and community-based services (HCBS), which millions of older adults and people with disabilities rely upon to live in the community.
This final rule includes new requirements related to the direct care workforce, access to home and community-based services (HCBS), health and safety protections, quality measures, and more.
New Pediatrics Guidance on Transition to Adulthood
In a policy statement published this month in the Pediatrics, the American Academy of Pediatrics journal is spelling out the steps that physicians should take as children move toward age 18 when they will be legally recognized as adults.
Pediatricians should start discussing the transition to adulthood and what level of assistance children are likely to need between the ages of 12 and 14. They should work together with patients, their caregivers and their teachers, always advocating for the least restrictive decision-making environment, according to the guidance. The guidance notes that pediatricians can familiarize themselves with local and state resources to make referrals, as needed, and they can reevaluate any decision-making arrangements during annual exams “to align with the youth’s desires, needs, and decision-making abilities over time.”
FDA Efforts to Ban Shock Devices
Since Congress clarified that the FDA does have the right to ban shock devices, the FDA acted on its authority and just ended its comment period in May on a proposed regulation that would prohibit use of the electric shock devices. The agency is currently considering more than 8,700 comments it received and deciding whether to finalize the rule.
However, a bill making its way through the U.S. House of Representatives would limit the FDA’s ability to do away with so-called electrical stimulation devices. The rider to the bill known as the Agriculture, Rural Development, Food and Drug Administration and Related Agencies Appropriations Act would prevent the FDA from banning a device that’s used by court order. Since all of the people receiving shock treatment at the Judge Rotenberg Center are doing so by court order, the provision would effectively nullify any FDA effort to ban the devices.
The measure is set to go before the House Appropriations Committee on July 10. The Autistic Self Advocacy Network and other advocacy groups are actively advocating against this bill.
STATE
Legislative Budget
In this short session which is a time to make adjustments to last year’s two year budget, a conference committee was appointed early in hopes that they would develop a budget between the House and Senate that would use the existing $987 million from the April surplus (surprise) to make specific adjustments to the existing fiscal year 2024-2025 budget. The committee was not able to come to an agreement. The key issue was that the House wanted to draw down an additional $1 billion from reserves and the Senate did not want to include this in completing any budget adjustments.
Since a compromise was not reached, the House and Senate went back to their chambers to work on budgets. The House released their budget on June 16 and passed its $31.7 billion budget on a 68-36 vote on June 20. The Senate opened debate on their own proposal on the same day and are scheduled to bring it to a floor vote on Monday June 24.
The House budget includes additional raises for teachers and state employees while the Senate proposal keeps the 3% state employee and teacher raises already approved. Both budgets include increased funding for private school tuition vouchers, and funds to address the large gap related to child-care facilities. Both also include additional funds for Medicaid, with the House budget adding increases in Medicaid provider rates for durable medical equipment ($9 million increase) and rates for Speech Language Audiology Therapy ($4 million increase).
More specific to I/DD, both budgets include funding to adjust budgets for Exceptional Children programs in the school system by allocating funds on a per child basis. Each Local Education Agency (LEA) will receive funds for the lesser of either all children who are identified as children with disabilities or thirteen percent (13%) of its allocated allotted average daily membership in the local school administrative unit for the current school year. This will help systems where more than 13% of students are identified as children with disabilities.
The House budget also included some funds for the Community College system to conduct program planning to build capacity for services for students with I/DD, as well as additional funds for Development Day Centers for children with disabilities.
Neither budget contains funds for the Innovations waiver or direct workforce salary increases.
With July 4th holiday approaching and many legislators having plans through mid-July, it is uncertain when a budget will be agreed upon. If an updated spending plan is not passed during this legislative short session, the budget enacted last year will remain in effect.
HB 237 - Mask bill
This bill initially would have removed language from statutes that would allow people to wear masks for health reasons. After a great amount of feedback and advocacy, the bill went to conference committee and language was amended to include ‘medical or surgical grade mask to prevent the spread of contagious disease.’ While this was an improvement there are continuing concerns about how ‘medical or surgical masks’ are defined, how contagious disease is defined, and the need for some people to wear masks for allergies and other medical conditions that may not be ‘contagious.’ There is also concerning language around the requirement to remove a mask when asked by ‘owner or occupant of public or private property’ for the purpose of identification of the person wearing the mask.
This bill passed the Senate and House and was sent to the Governor for his signature. The Governor vetoed the bill. There will likely be an override of the veto.
NCCDD Chair Bryan Dooley Speaks at the White House Livestream Celebration of Olmstead
Bryan Dooley (center) prepares to speak about the progress of the Olmstead Decision at the White HouseThe email came in early June. Bryan Dooley, “would you like to speak at the White House about the 25th Anniversary of the Olmstead Decision on June 18th?” The answer was “Yes!” Bryan has long championed disability rights history and the rights and needs of the intellectual or other developmental disability (I/DD) community in North Carolina. Bryan is a Community Integration Specialist at Solutions for Independence in Winston Salem, Chair of the North Carolina Council on Developmental Disabilities (NCCDD), and the Co-Chair of the North Carolina Olmstead Planning and Stakeholder Advisory Committee.
Bryan was joined by his grandmother, Rita Dooley, support staff, and Council staff. The event included former Rep. Tony Coelho who was one of the key architects and legislative leaders in the passage of the Americans with Disabilities Act and Gene Sperling, Senior Advisor to the President of the United States. Advocates with disabilities from across the country spoke about the importance of the Olmstead decision and how much more progress is needed.
Here is an excerpt from Bryan’s message:
In advocacy training, I've learned that our stories are powerful tools for change. This became clear when my story and my colleagues' stories significantly impacted North Carolina. Like many with significant disabilities, I've struggled with a shortage of direct support professionals.
In Spring 2021, I lost my mom, my primary caretaker, to cancer. Before her death, I felt the shortage of direct care workers. During COVID-19, one support professional worked 12-14 hours a day, earning just $15 an hour with no benefits, enabling me to stay in my home and find employment. He eventually had to seek better-paying work, and I had to rely on my elderly grandparents.
At a NACDD Conference in Washington DC, I discussed the crisis with Jill Jacobs, who encouraged me to meet with North Carolina Governor Roy Cooper. After sending a letter to DHHS Secretary Kody Kinsley, we established a productive relationship and met key General Assembly leaders. Our community's efforts led to historic investments … in disability support systems, though more progress is needed to meet the Olmstead Decision.
Your story matters—never doubt it.
It was a well-deserved honor for Bryan who focuses his free time and his work on championing Olmstead. Our country and our state have not yet fulfilled the promise of Olmstead, but we can come much closer when Bryan Dooley has a chance to advocate at the White House.
Watch the entire event on YouTube: White House Olmstead 25th Anniversary Observance
Emergency Preparedness: Plan. Protect. Stay Informed!
The North Carolina Council on Developmental Disabilities (NCCDD) supports ReadyNC.gov in encouraging people to be prepared for all types of emergencies. And with weather experts predicting a lot of hurricanes this year, it’s even more important to prepare now!
Here are some tips to get you started:
- Make a Plan. Having a plan in place is the most important step. Read how to create a plan for your specific needs. ASL and Spanish videos are also available.
- Watch an ASL video on how to use the ReadyNC.gov website
- Make a Kit. The time to put an emergency kit together is before a disaster. An emergency kit is a container of items your family may need in or after an emergency. Read how to create your own kit. ASL and Spanish videos are also available.
- Subscribe to Emergency Alerts. Emergency messages are sent by state and local governments and the National Weather Service via television, radio, weather radios, social media and alerts on cellular phones. Make sure you have a way to monitor severe weather conditions and receive emergency alerts at all times. This information is also available in a Spanish video.
- Review NC's Hurricane Guide. This guide is specific to North Carolina and is available in both English and Spanish.
These resources are all available on the ReadyNC.gov website. Just click the "Select Language" in the upper right area of the web page to choose the language you need.
NCCDD will continue to share updates, tips, and other emergency preparedness information for throughout this year’s hurricane season on its Hot Topics blog. Stay informed and share with others!
NCCDD Accepting Nominations for its Annual Advocacy and Leadership Awards
Are you or do you know a passionate leader in the North Carolina I/DD community worthy of recognition?
The Advocacy and Leadership Awards, hosted by the North Carolina Council on Developmental Disabilities (NCCDD), honor the significant contributions made by advocates who are actively working to change attitudes and support greater choices and build a more inclusive North Carolina for people with intellectual and other developmental disabilities (I/DD).
The awards honor self-advocates, professionals who work for people with I/DD, advocates and volunteers who have passionately worked and continue to work to build a better North Carolina for people with intellectual and developmental disabilities (I/DD).
NC Leadership Achievement Award: This award is presented to an outstanding North Carolina self-advocate whose work has improved the quality of life for people with I/DD. This award was presented for the first time at the 2018 November NCCDD Quarterly Meeting.
Jack B. Hefner Memorial Award: This award celebrates the vision and achievement of North Carolina's families and people with I/DD. Jack B. Hefner served the State of North Carolina as a member of NCCDD from 1982 until his passing in 1994. As a father to a son with I/DD, "Big Jack" was willing to do whatever it took to enhance the quality of life for North Carolinians affected by disability. Jack B. Hefner's leadership inspired a generation of advocates and people with I/DD to work forcefully. On October 27, 1994, the NCCDD established the Jack B. Hefner Award to celebrate the vision and achievement of North Carolina's families and people with I/DD.
Helen C. "Holly" Riddle Distinguished Service Award: This award celebrates the work of professionals with North Carolina's families and people with I/DD. Helen C. "Holly" Riddle served as the Executive Director of NCCDD for 23 years. Through her professionalism, innovation and tireless dedication to look beyond the barriers and focus on creative solutions, she led the journey to make North Carolina a state where inclusion and full participation are possible for all citizens. This award is the highest recognition given by the NCCDD to those professionals who have made lasting contributions towards improving opportunities, breaking down barriers, and promoting increased quality of life for people with intellectual and developmental disabilities. In 2013, NCCDD established the Helen C. "Holly" Riddle Award to celebrate the work of professionals with North Carolina's families and people with I/DD.
How to Nominate Someone (or Yourself!)
Complete the online application form for the award you would like to nominate yourself or someone you know. Forms are available in English and Spanish.
Deadline to submit nominations is Wednesday, July 10, 2024.
- NC Leadership Achievement Award: English | Spanish
- Jack B. Hefner Memorial Award: English | Spanish
- Helen C. "Holly" Riddle Distinguished Service Award: English | Spanish
Winners will be announced at the November 2024 Quarterly Council Meeting during the Advocacy & Leadership Awards Ceremony.
For more information about nominating someone for an award, and to meet last year’s award recipients, go to https://nccdd.org/the-council/advocacy-and-leadership-awards.html.
July Self-Advocate Discussion Series: Let's Talk About the Americans with Disabilities Act!
The Americans with Disabilities Act (ADA) was signed into law on July 26, 1990 by President George H.W. Bush. Throughout the year and on the ADA Anniversary, the ADA National Network recognizes this landmark event and the important work to promote equal opportunity for people with disabilities. Join us to celebrate, share, and learn.
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: What are Tailored Plans?
Introducing North Carolina's Tailored Plans: A Personalized Approach to Healthcare Coverage
North Carolina's healthcare landscape is evolving with the introduction of Tailored Plans, which, according to the state, is designed to better meet the diverse needs of North Carolinians. As part of the state's Medicaid managed care reform, the state hopes Tailored Plans will offer a personalized approach to healthcare coverage, aiming to improve health outcomes and streamline services for Medicaid beneficiaries. Unlike traditional fee-for-service Medicaid, where the state pays healthcare providers directly for each service rendered, managed care organizations (MCOs) work to administer Medicaid benefits in a more coordinated and holistic manner.
According to the state, Tailored Plans prioritize several key aspects:
- Improved Care Coordination: By assigning a primary care provider (PCP) and care management team, Tailored Plans ensure beneficiaries receive integrated and comprehensive care.
- Enhanced Access to Services: Offering a wide network of healthcare providers, including specialists, hospitals, and community-based organizations, Tailored Plans ensure beneficiaries can access the services they need.
- Promotion of Wellness and Prevention: Through proactive health assessments, screenings, and preventive care services, Tailored Plans prioritize keeping beneficiaries healthy and managing chronic conditions effectively.
- Addressing Social Needs: Recognizing the impact of social determinants on health, Tailored Plans offer support services like transportation, housing assistance, and nutritional counseling to address beneficiaries' non-medical needs.
Enrolling in a Tailored Plan is a straightforward process:
- Choose a Plan: North Carolina offers multiple Tailored Plans, each with its own network of providers and covered services. Select the plan that best fits your needs.
- Check Eligibility: To qualify for Tailored Plans, you must be eligible for Medicaid in North Carolina. This typically includes factors such as income level, household size, and citizenship or immigration status.
- Enroll during Open Enrollment or Special Enrollment Periods: Open Enrollment periods are designated times when beneficiaries can choose or switch their Medicaid managed care plans. Special Enrollment Periods are available for certain qualifying events.
- Choose a Primary Care Provider (PCP): Once enrolled, select a primary care provider from your plan's network. Your PCP will coordinate your healthcare needs.
- Receive Your Plan's Member Handbook: Upon enrollment, you'll receive a member handbook outlining the plan's benefits, covered services, and contact information for customer service and care management.
- Start Using Your Benefits: Once enrolled, you can begin using your Tailored Plan benefits, including scheduling appointments with your PCP, accessing specialists, and utilizing additional covered services.
For more detail information please click on: https://medicaid.ncdhhs.gov/tailored-plans
ESPAÑOL
Planes de Salud Personalizados de Carolina del Norte: Un Enfoque Individual para la Cobertura de Atención Médica
La provisión de servicios de salud en Carolina del Norte está evolucionando con la introducción de los Planes de Salud Personalizados, que, según el estado, están diseñados para satisfacer mejor las diversas necesidades de los habitantes de Carolina del Norte. Como parte de la reforma de salud impulsada por el Medicaid del estado que espera que los Planes de Salud Personalizados ofrezcan un enfoque individualizado para la cobertura de servicios de salud, con el objetivo de mejorar los resultados de salud y simplificar los servicios para los beneficiarios de Medicaid.
A diferencia de Medicaid tradicional de tarifa por servicio, donde el estado paga directamente a los proveedores de salud por cada servicio prestado, las organizaciones de salud gestionada (MCO, por sus siglas en inglés) trabajan por administrar los beneficios de Medicaid de manera más coordinada y holística.
Según el Estado, los Planes de Salud Personalizados se enfocan varios aspectos clave:
Coordinación de la Atención Mejorada: Al asignar un proveedor de atención primaria (PCP, por sus siglas en inglés) y un equipo de gestión de atención, los Planes de Salud Personalizados aseguran que los beneficiarios reciban atención integrada y completa.
Acceso Mejorado a los Servicios: Ofreciendo una amplia red de proveedores de atención médica, incluyendo especialistas, hospitales y organizaciones comunitarias, los Planes de Salud Personalizados aseguran que los beneficiarios puedan acceder a los servicios que necesitan.
Promoción del Bienestar y la Prevención: A través de evaluaciones de salud proactivas, exámenes y servicios de atención preventiva, los Planes de Salud Personalizados priorizan mantener a los beneficiarios saludables y manejar eficazmente las condiciones crónicas.
Atención de las Necesidades Sociales: Reconociendo el impacto de los determinantes sociales en la salud, los Planes de Salud Personalizados ofrecen servicios de apoyo como transporte, asistencia para la vivienda y asesoramiento nutricional para abordar las necesidades no médicas de los beneficiarios.
La inscripción en un Plan de Salud Personalizado es un proceso sencillo:
- Elija un Plan: Carolina del Norte ofrece varios Planes de Salud Personalizados, cada uno con su propia red de proveedores y servicios cubiertos. Seleccione el plan que mejor se adapte a sus necesidades.
- Verifique la Elegibilidad: Para calificar para los Planes de Salud Personalizados, debe ser elegible para Medicaid en Carolina del Norte. Esto generalmente incluye factores como nivel de ingresos, tamaño del hogar y estado de ciudadanía o inmigración.
- Inscríbase durante los Períodos de Inscripción Abierta o Períodos de Inscripción Especial: Los períodos de inscripción abierta son momentos designados en los que los beneficiarios pueden elegir o cambiar sus planes de atención médica gestionada de Medicaid. Los Períodos de Inscripción Especial están disponibles para ciertos eventos calificativos.
- Elija un Proveedor de Atención Primaria (PCP): Una vez inscrito, seleccione un proveedor de atención primaria de la red de su plan. Su PCP coordinará sus necesidades de atención médica.
- Reciba el Manual del Miembro de su Plan: Al inscribirse, recibirá un manual del miembro que describe los beneficios del plan, los servicios cubiertos y la información de contacto para el servicio al cliente y la gestión de la atención.
- Comience a Utilizar sus Beneficios: Una vez inscrito, puede comenzar a usar los beneficios de su Plan Personalizado, incluyendo programar citas con su PCP, acceder a especialistas y utilizar servicios cubiertos adicionales.
Para información detallada en español favor de acceder a: https://medicaid.ncdhhs.gov/tailored-plans/es
Destacados y temas de actualidad en español
