May 2024 Highlights and Hot Topics
-
-
-
-
-
- Message from the Executive Director
- Public Policy Update (as of 5/24/24)
- Disability Community Advocates Meet with Lawmakers and Share Stories about Issues Facing the Disability Community
- June Self-Advocate Discussion Series: Healthy Relationships - Part 2
- Hispanic Disability Outreach: Learn about LME/MCOs in North Carolina
- What is Disability Voting Rights Week?
- En Español - mayo 2024
- Audio - Highlights and Hot Topics
-
-
-
-
Message from the Executive Director
Talley Wells
NCCDD Executive Director
What a night! What a day!
Individuals with intellectual and other developmental disabilities (I/DD) and family members had two great opportunities to connect with legislators in May.
The North Carolina Council on Developmental Disabilities (NCCDD) teamed up with Charlotte advocacy organizations, providers, and legislators to have a fantastic Developmental Disabilities Town Hall on Thursday evening May 2, 2024 at a hotel near the Charlotte Airport. The event included 270 people online and in-person. It started and ended with the songs of Chris Hendricks. We received a special welcome from Jose Hernandez-Paris of the Latin American Association and Khristina Hernandez. Then, we heard from Senator Jim Burgin, Representative Carla Cunnigham, and Representative Terry Brown. The night ended with important questions and comments from our community.
Less than two weeks later, the I/DD Legislative Caucus held a listening session in the impressive third floor auditorium of the Legislative Building on a Tuesday afternoon. Meet the Need NC and many other groups worked with the Legislative Caucus and NCCDD to plan the event. Twenty-three individuals with I/DD, family members, and advocates spoke to legislators. There were over 110 people in attendance. Legislators who attended included: Rep. Zack Hawkins, Senator Jim Burgin, Senator Joyce Krawiec, Senator Michael Lee, Senator Lisa Grafstein, Senator Rachel Hunt, Rep. Erin Pare’, Rep. Frank Sossamon, Rep. Gloristine Brown, Rep. Erik Ager, Rep. Kanika Brown, Rep. Sara Crawford, Rep. Renee Price, and Rep. Marcia Morey. But that wasn’t all! Many of us met with other legislators who weren’t able to attend the Caucus.
At both events, individuals and families told their stories of how the Direct Support Professional workforce shortage and the waiting list have impacted their lives. Legislators shared how important it was to hear from people across the state about these issues as they make policy and budget decisions.
Thank you all who shared your stories with legislators and who showed up for these important events. This is how we advocate for our community. We have much further to go, but we can do this together!
Public Policy Update (as of 5/24/24)
Federal Updates
Budget
The President’s proposed budget request for 2025 fiscal year, which begins in October, included $150 billion over 10 years “to strengthen and expand Medicaid home and community-based services.” Beyond requesting more investment in home and community-based services, 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.
Congress has begun work on the Fiscal Year (FY) 2025 budget. The House is holding hearings and writing appropriations bills. On May 16, Chairman Cole (R-OK) released the schedule for the mark-up of the twelve appropriations bills, including the Labor-Health-Human Services-Education and Related Agencies (LHHS) bill. The LHHS bill is scheduled for mark-up on Thursday June 27 in the LHHS Subcommittee and to be marked-up in the Appropriations Committee on July 10. Chairman Cole also released the Interim Fiscal Year 2025 Subcommittee Allocations. These allocations are the amount of funding that each appropriations bill will have to allocate to programs in its jurisdiction in FY 2025. The Senate is also working to hold hearings and write bills.
Recognizing the Role of Direct Support Professional Act (S 1332)
This bill 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 (DSPs) 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 for consideration last April.
A Stronger Workforce for America Act (HR 6655)
The Workforce Innovation and Opportunity Act (WIOA) was signed into law on July 22, 2014. WIOA is designed to help job seekers access employment, education, training, and support services to succeed in the labor market and to match employers with the skilled workers they need to compete in the global economy. This bill would make critical improvements to WIOA. It would strengthen the relationship between employers and the workforce system, support workers to improve their skills, ensure greater efficiency and accountability to WIOA programs, and strengthen pathways to economic opportunity and support innovation for a skills-based economy.
Alternatives to Guardianship Education Act
On May 8, Senator Casey (D-PA) and Representative Gay Scanlon (D-PA-5) introduced the Alternatives to Guardianship Education Act (S 4283 / HR 8328). The bills will help increase awareness of alternatives to guardianship, like supported-decision making and sharing information and resources with health care workers, educators, family members, and court personnel through education programs. The bills also require states to collect data on guardianships and will create grant programs to implement education programs to increase awareness of guardianship alternatives and more. The bill was referred to the House Education and Workforce Committee and the Senate Health, Education, Labor and Pensions Committee.
Ensuring Access to Medicaid Services (Access Rule)
The U.S. Department of Health and Human Services issued a final rule on April 22 to help improve access to home and community-based services (HCBS) as well as improve the quality of jobs for caregivers. The rule will require:
- At least 80 percent of Medicaid payments go to caregiver wages.
- Transparency by states in how much they pay for services and how rates are set.
- Creation of an advisory group made up of people receiving services, providers and other stakeholders to provide input on rates and compensation for direct care workers.
There is a several year implementation process and states will be working to understand and implement requirements over the next several months.
Proposed Rule to Ban Electrical Stimulation Devices
The U.S. 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. 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 will be up for public comment until May 28, 2024 at which point the FDA will review and decide whether to proceed with finalizing the regulation. The proposed rule is available online at www.regulations.gov.
State
The legislative short session began on April 24, 2024. The short session is designed primarily for review and adjustments to the two-year budget that was approved last session. The Governor released his budget which included the following priorities:
- Ensuring a strong Medicaid program
- Funds for rebase to address costs, rates, services
- Physician/provider rates to 90% of medicare rates
- Expansion of Healthy Opportunities Program
- Addressing Early Education and Child Care Crisis
- Statewide rate floor for child care subsidy
- Increased rates for NC PreK
- Supporting Aging Populations and North Carolinians with Disabilities
- $180 million to support DSPs
- 1,000 Innovations slots
- Increase guardianship rates
- Supporting essential services by addressing workforce needs
- 5% increase state employees
- Additional positions within DHHS
The Governor’s budget was the start of the process. The legislature is now in the midst of their budget process. The state has about a $1 million revenue surplus this year, which is less than what was projected in the spring, but still a substantial amount. The Senate and House are both working on proposed budgets but have not reached an agreement.
I/DD Omnibus Bill (HB 1003)
This bill includes funding for DSP wages, Innovation Waiver slots, other services like housing and employment supports, as well as banning the use of prone restraints and requiring schools to notify parents when seclusion and restraint is used on a child. This bill highlights some of the priorities of the I/DD community. Advocates hope at least part of this bill will be rolled into the budget.
Unmasking Mobs and Criminals Bill
The Senate passed this bill which includes language around penalties for wearing a mask during demonstrations or committing a crime. It also includes the repeal of the physical health and safety exemption to laws prohibiting wearing masks on public property. This section of the bill is potentially detrimental to people with disabilities and others who may experience health issues. There has been considerable feedback from advocates. The House did not concur with the Senate version of the bill, so the bill is now in conference committee.
Tailored Plans
The Department of Health and Human Services (DHHS) is moving forward with implementation of Tailored Plans on July 1, 2024. Letters were mailed in mid-April to anyone moving to a Tailored Plan. If a person did not choose a primary care provider (PCP) by May 15, the Tailored Plan assigned one to the person. People can change their PCP through January 31, 2025. Member ID cards and welcome packets should be sent at the end of May. The North Carolina Council on Developmental Disabilities will continue to monitor how the roll-out proceeds and the impact on access to providers. If you think you have been incorrectly enrolled, have the wrong primary care provider assignment, or are having other problems with Medicaid, you can contact the Medicaid Ombudsman at 1-877-201-3750 and/or contact your Local Management Entity (LME) for assistance.
Disability Community Advocates Meet with Lawmakers and Share Stories about Issues Facing the Disability Community
Over 100 people with intellectual and developmental disabilities, their families, and caregivers attended the Intellectual or Other Developmental Disabilities (I/DD) Legislative Caucus Listening Session held on May 14, 2024, at the NC Legislative Building.
The listening session, led by Rep. Zack Hawkins (D - District 31) who is co-chair of the I/DD Caucus, included 10 senators and representatives representing districts across the state. They came to meet and learn from individuals with I/DD who are currently facing barriers in receiving the supports and services they need to live their lives to their fullest potential and in the community setting of their choice.
Twenty individuals from Boone to Wilmington came to the NC Legislative Building to share their stories about what having an Innovations Waiver can do for them and for some, how it has helped them.
Following the event, the Caucus leaders held a press conference to raise awareness of the 17,800 Innovations Waiver Waitlist, which has a nine-year waiting period. Rep. Hawkins introduced and announced the support of House Bill 1003, which calls for an increase of DSP wages and slots for the Innovations Waiver, including a development of a 10-year-plan to address the Registry of Unmet Needs.
The waitlist is paired with the shortage of Direct Support Professionals or individuals who support people with I/DD daily. The shortage crisis is caused by low wages that are not sustainable with today’s cost of living.
With higher wages available in other competitive industries, such as retail and hospitality, I/DD community advocates are pushing to increase the hourly wage to $18/hour to make it a competitive industry. The crisis was looming before the COVID-19 pandemic and grew exponentially afterward.
What rang true throughout the entire event was the importance of sharing stories.
“Your presence here today makes an impact,” said Senator Jim Burgin, who continues to advocate on behalf of the I/DD community across the state.
“You showed up today. You made the drive. You shared your stories,” said Rep. Hawkins to the families and individuals at the hearing. “And one thing we know for sure is that if legislators hear from a community enough, it will be the talk of the General Assembly. So, everybody needs to be talking about I/DD. So, when Innovations Waiver comes up, when the DSP crisis comes up, they will all know what we’re talking about. You being here is moving a needle.”
June Self-Advocate Discussion Series: Healthy Relationships - Part 2
It’s not what you know, but who you know. Have you ever heard that before? Of course, you have because relationships with other people are one of the most meaningful parts of life!
In May, we heard from Katherine McLaughlin, CEO, Founder and Trainer of Elevatus who provided training and guided conversations around important things to think about in relationships. Join us on Wednesday, June 19, 2024 as we will continue to talk about developing and maintaining healthy relationships and the importance of ending the unhealthy ones. You can share your own story about friends and partnerships you have made over the years. You could even share about how you ended a relationship that was not good for you. The series is facilitated by Chris Hendricks, NCCDD Policy Education Coordinator and NCCDD members who are self-advocates.
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: Learn about LME/MCOs in North Carolina
LME/MCOs in North Carolina: Coordinating Mental Health and Developmental Disabilities Services
Local Management Entities/Managed Care Organizations (LME/MCOs) play a crucial role in coordinating mental health, substance use, developmental disabilities, and traumatic brain injury services in North Carolina. Here’s what you need to know.
What are LME/MCOs?
LME/MCOs are organizations that:
- Administer Medicaid Managed Care Plans in North Carolina.
- Coordinate certain services for Direct Medicaid beneficiaries in North Carolina.
- Coordinate certain services for members of the Tribal Option EBCI.
Each county in North Carolina has an LME/MCO that serves that county.
You can find detailed information about LME/MCOs and the services they offer in the North Carolina Department of Health and Human Services LME/MCO Directory at https://www.ncdhhs.gov/providers/lme-mco-directory. You can then visit the website for the LME/MCO that services your county.
Here are the LME/MCOs and the areas they serve:
- Alliance Health: Serves Cumberland, Durham, Harnett, Johnston, Mecklenburg, Orange, and Wake counties.
- Partners Health Management: Serves Burke, Cabarrus, Catawba, Cleveland, Davie, Davidson, Forsyth, Gaston, Iredell, Lincoln, Rutherford, Stanly, Surry, Union, and Yadkin counties.
- Trillium Health Resources: Serves a wide range of counties, including Alamance, Beaufort, Brunswick, Craven, Guilford, Moore, Nash, New Hanover, Pitt, Randolph, Richmond, Robeson, Sampson, Scotland, Wayne, and many others.
- Vaya Health: Serves Alamance, Alexander, Alleghany, Ashe, Avery, Buncombe, Caldwell, Caswell, Chatham, Cherokee, Clay, Franklin, Graham, Granville, Haywood, Henderson, Jackson, Macon, Madison, McDowell, Mitchell, Person, Polk, Rockingham, Rowan, Stokes, Swain, Transylvania, Vance, Watauga, Wilkes, Yancey
How do you request services?
If you need access to mental health, substance use services, or developmental disability services, contact the LME/MCO serving your county.
Remember that LME/MCOs play a vital role in ensuring that individuals receive appropriate services for their mental health and developmental needs. It’s always advisable to consult directly with your local LME/MCO for up-to-date and specific information on available services.
En español
LME/MCO en Carolina del Norte: Coordinación de servicios de salud mental y discapacidades del desarrollo
Entidades de Gestión Local/Organizaciones de Manejo de Cuidado (las LME/MCO) desempeñan un papel crucial en la coordinación de los servicios de salud mental, abuso de sustancias, discapacidades del desarrollo y lesiones cerebrales traumáticas en Carolina del Norte. Esto es lo que necesitas saber.
¿Qué son las LME/MCO?
Las LME/MCO son organizaciones que:
- Administran los planes de cuidados a través del Medicaid en Carolina del Norte.
- Coordinan ciertos servicios para los beneficiarios de Medicaid directo en Carolina del Norte.
- Coordinan ciertos servicios para los miembros de la EBCI de Opción Tribal.
Cada condado de Carolina del Norte tiene una LME/MCO que sirve a ese condado.
Puede encontrar información detallada sobre las LME/MCO y los servicios que ofrecen en el Directorio LME/MCO del Departamento de Salud y Servicios Humanos de Carolina del Norte https://www.ncdhhs.gov/providers/lme-mco-directory. Y puede visitar el sitio web de la LME/MCO que presta servicios en su condado.
Estas son algunas de las LME/MCO y las áreas a las que sirven:
- Alliance Health: Presta servicios en los condados de Cumberland, Durham, Harnett, Johnston, Mecklenburg, Orange y Wake.
- Partners Health Management: Presta servicios en los condados de Burke, Cabarrus, Catawba, Cleveland, Davie, Davidson, Forsyth, Gaston, Iredell, Lincoln, Rutherford, Stanly, Surry, Union y Yadkin.
- Trillium Health Resources: Sirve a una amplia gama de condados, incluidos Alamance, Beaufort, Brunswick, Craven, Guilford, Moore, Nash, New Hanover, Pitt, Randolph, Richmond, Robeson, Sampson, Scotland, Wayne y muchos otros.
- Vaya Health: Presta servicios en los condados de Alamance, Alexander, Alleghany, Ashe, Avery, Buncombe, Caldwell, Caswell, Chatham, Cherokee, Clay, Franklin, Graham, Granville, Haywood, Henderson, Jackson, Macon, Madison, McDowell, Mitchell, Person, Polk, Rockingham, Rowan, Stokes, Swain, Transylvania, Vance, Watauga, Wilkes, Yancey
¿Cómo solicitar los servicios?
Si necesita acceso a servicios de salud mental, abuso de sustancias o servicios para discapacidades del desarrollo, comuníquese con la LME/MCO que presta servicios en su condado.
Recuerde que las LME/MCO desempeñan un papel vital para garantizar que las personas reciban los servicios adecuados para sus necesidades de salud mental y desarrollo. Es recomendable consultar directamente con su LME/MCO local para obtener información actualizada y específica sobre los servicios disponibles.
What is Disability Voting Rights Week?
There are over 38 million people with disabilities who are eligible to vote, but there are barriers keeping many voters with disabilities from accessing their right to vote. Disability Voting Rights Week is all about protecting the rights of people with disabilities to participate fully in our democracy.
Disability Voting Rights Week used to be called National Disability Voter Registration Week. It was and still is hosted by the American Association of People with Disabilities' (AAPD) REV UP Voting Campaign. REV UP Stands for "Register! Educate! Vote! Use your Power!" and is a nonpartisan campaign of the AAPD.
This year's campaign will be held September 9 - 13, 2024. Sign up for alerts to learn about the REV UP Voting Campaign and hear about their upcoming events and opportunities.
Aspectos destacados y temas de interes - mayo 2024
