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Highlights & Hot Topics Newsletter

September 2025 Highlights and Hot Topics

September 29, 2025

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The September 2025 issue of Highlights & Hot Topics includes a message from one of our systems change managers, a public policy update, how to prepare for an emergency, how to host an Unmet film watch party, and upcoming webinars hosted by NCCDD. Articles are also available in Spanish and audio.

Guest Column: How Helene Built A Community

Pam Hunter Dempsey, NCCDD Systems Change Manager

“525,600 minutes
 How do you measure, measure a year?” I found myself in Asheville during the third week of September 2025, reflecting on these song lyrics from the Broadway play, RENT, and reflecting on life for my friends in Western North Carolina one year ago, when a storm named Helene made history and landed very far inland, causing a lot of destruction.

Many others across our state and our country are also reflecting on the impact of Helene. I want to reflect differently. I want to share some of what I witnessed from friends in our intellectual and developmental disability (I/DD) community in response to the terrible storm as they built community with their acts of kindness.

As I reflect on how to measure a year, I will measure in these thoughts that follow. For me, the measuring is in new friendships made, help offered, and the ever-extending ripple effect of kindness to take care of and build a community.

Ashley, a local business owner, converted her downtown Asheville business into a place for people to receive clothing, a hug, and to sit and chat with one another after they lost so much. People felt seen, they received care, and they felt the kindness of another who gave them hope.

Jill knew someone who could bring lots of clean drinking water. Within hours, a container was on its way to provide hundreds of gallons of fresh water to an area devastated and in need.

Lawrence walked a mile or two to get to places and see to the needs of his neighbors. He would then walk back to find a satellite connection so that we could message, and I could share with the people who could send workers to help the people in need. Lawrence also shared widely about the places that were serving up free meals for any who were hungry.

Father and son duo Ray and Nicholas worked countless hours, unloading donations of food and supplies, packing warehouses to give to people in need, while they, themselves, were having hard times after the storm.

Jade had no access to information for days after the storm. They did not know why their support worker had not come by. Two days after the storm, Jade replied to me that another friend was able to come get them and bring them to safety. Jade was no longer alone.

Diane helped Jenny and Elaine find space to store some important medical equipment to be used to help medically fragile children, whose parents were desperate for backup equipment when their own equipment was damaged.

Shaylin and German provided support from their home far away from the storm area. They directed resources from their national center to take calls from our area. NCCDD shared out their phone number, and Western North Carolina families were able to call them and get answers to their questions, instructions on how to get assistance, and more.

Holly shared that many people at her work had their own personal losses and that everyone was working hard to support each other.

Ronda left her home, which was damaged in the storm. She and the family dog moved to a safe area, and she continued to work on trying to contact families and help with their support needs.

On day four, Christina had only four gallons of water available for her family when I heard from her. We share a love of growing flowers called dahlias. She is a much better gardener than I am, and her dahlia collection was very big. We texted about our sadness over so much loss.

Nicole lived in the arts district. She enjoyed weekly art classes and dancing with her friends. Her home was badly damaged, but she was able to find a safe place to stay with family who lived away from the flooded area where she had lived. She still missed her friends and the fun times they have together. When her group returned to their weekly art and dance sessions, she and her friends were very happy.

A friend of mine said to me recently at a conference, “Our stories will save us.” I disagree. Yes, our stories are very important. But I think having friends to share our stories with will save us. Being in community with each other will save us. Being kind and sharing will save us. It’s living together in Community that will save us. We belong to each other, friends.

Pam Hunter Dempsey, NCCDD Systems Change Manager

Public Policy Update as of August 25, 2025

State Update

As reported in the August Highlights & Hot Topics newsletter, in response to the shortfall for Medicaid Rebase in the mini-budget that was passed by the legislature, an announcement came out on August 11, 2025, from the North Carolina Department of Health and Human Services (DHHS) Secretary Sangvai, indicating the following cuts, which are set to take place on October 1, 2025:

  • Rate reductions of 3% across all providers, including Innovations
  • Rate reductions of 8% Personal Care Services in CAP-DA and CAP-C, 3% other CAP services
  • Rate reductions of 8% for ICFs
  • Rate reduction of 10% for inpatient, PRTFs, RB-BHT (intervention for autism)
  • Elimination of certain services altogether – GLP-1 treatment for obesity

The week of September 22, 2025, legislators returned for a three-day legislative session and both the Senate and House passed bills that would appropriate $690 million for the Medicaid Rebase. The Senate bill also included funding for a children’s hospital which was not a part of the House bill. The Senate and House were unable to come to an agreement so neither of the bills made it to the Governor’s desk for a signature.

On September 25, 2025, the Governor held a press conference where he announced that, without additional funding, the proposed Medicaid cuts would take effect on October 1, 2025, with a 45-day implementation timeframe. In order to change rates, DHHS is required to submit a state plan amendment to the Centers for Medicare and Medicaid (CMS). Following the press conference, the LME/MCOs indicated that they will not implement the reductions until November 1, 2025.

These timelines left an opportunity for continued education and advocacy about the effects of the proposed cuts. Since DHHS indicated that if the $690 million is approved, there will be no need to reduce rates, there is hope that when the legislature returns in late October there can be an agreement reached between the Senate and House so that rate cuts can be avoided.

The upcoming legislative sessions are:

  • October 20-23, 2025, at 10 a.m.
  • November 17-20, 2025, at 10 a.m.
  • December 15-18, 2025, at 10 a.m.
  • January 12-15, 2026, at 10 a.m.
  • February 9-12, 2026, at 10 a.m.
  • March 9-12, 2026, at 10 a.m.
  • April 6-9, 2026, at 10 a.m.
  • April 21, 2026 (Short Session begins), at 12:00 noon

Federal Update

Budget

The federal fiscal year ends September 30, 2025 and there has been no agreement between the House and Senate on a budget. Congress has been working to pass a continuing resolution (CR), a bill that would temporarily fund the federal government while they continue to work on a budget for the year which begins October 1, 2025. On September 19, 2025, the House of Representatives passed a continuing resolution to fund the government through November 21, 2025 by a vote of 217-212, which the Senate voted down, 44-48. Both the House and Senate were on recess the week of September 22nd – 26th and the President recently cancelled a meeting with Democrats to discuss a way forward on funding the government. With only a couple of days left to come to an agreement, there is a significant risk of a federal government shutdown.

Supplemental Nutrition Assistance Program (SNAP)

In addition to the cuts to Medicaid in HR1/Reconciliation bill that have been described in the last two Highlights & Hot Topics newsletters, the reconciliation bill includes devastating cuts to SNAP, which will reduce food assistance for millions of people, including some people with IDD. The $187 billion cut to SNAP over the next decade (according to the Congressional Budget Office) is the largest cut to SNAP ever enacted. This creates a cost-shift to states, which requires states to pay a share of SNAP benefits or be forced to drop out of SNAP entirely. This also creates pressure for our state to find additional funding which could lead to additional cuts in other areas.

In Congress, Senator Lujan, Senator Klobuchar, Representative Hayes and Representative Craig are looking for co-sponsors for a bill titled “Restoring Food Security for American Families and Farmers Act of 2025”. This bill would repeal all the SNAP cuts in HR1.

Autism in the News

On September 22, 2025, the President, the federal DHHS Secretary, and other federal DHHS leaders held a press conference with announcements aimed at “reversing the autism epidemic.” Many of the announcements made are misleading, disrespectful, and promote stigma. Several leading national organizations responded with statements addressing these concerns. This is the statement from the National Association of Councils on Developmental Disabilities:

Autistic people deserve respect and support. There are many policy and program changes HHS could pursue that would materially improve the lives of autistic people and our families.

Below are links to organization statements that reinforce the need for accurate representation of research and promote the dignity of people with autism.

Be Ready: Emergency Preparedness for People with Disabilities

September is National Disaster Preparedness Month, a time to take small steps that make a big difference in being ready for emergencies and natural disasters. At the August The Council Presents webinar, hosted by the North Carolina Council on Developmental Disabilities (NCCDD), presenters shared tips and strategies for people with intellectual or developmental disabilities (I/DD) and others with access or functional needs on how to prepare for emergencies like tropical storms and hurricanes.

ReadyNC.gov logoThe main message was simple: include everyone in your planning so that nobody is left behind or unprepared. The presenters reminded us that preparation doesn’t have to be overwhelming—start with small steps, like making an emergency kit, writing down important contacts, and creating a personal support network. They also encouraged families, caregivers, and community members to talk openly about emergency plans and practice them together. Participants asked about backup communication plans to support people with I/DD during and after a disaster when there is no internet or cell phone coverage, and learned about the LifeStraw for water safety.

NCCDD would like to thank the presenters for sharing this valuable information: Sheri Badger, Senior Communications Specialist-Public Information Officer, King County (Washington State) Office of Emergency Management, former Disability Integration Specialist, North Carolina Emergency Management; and Lauren Howard, Director, North Carolina Office on Disability and Health in the North Carolina Department of Health and Human Services (NC DHHS).

Visit the NCCDD’s Emergency Preparedness Resources webpage for more information and resources on how to prepare for an emergency.

Join the Crowd! Host an Unmet Film Watch Party

"Unmet: North Carolina's Disability Crisis" is a powerful 25-minute film commissioned by the North Carolina Council on Developmental Disabilities (NCCDD). The film shares the real-life stories of people with intellectual and other developmental disabilities (I/DD) whose needs continue to go unmet. This past summer, NCCDD released the film for organizations, nonprofits, and individuals to host as a watch party at their homes or in their communities.

“Unmet gives a voice to the individuals and families navigating barriers in our state’s support systems,” said Talley Wells, Executive Director of NCCDD. “We hope these watch parties lead to thoughtful conversations and renewed commitment to building a more inclusive North Carolina.”

To host a screening, interested individuals or organizations can complete the request form at https://nccdd.org/get-involved/unmet-film. Once approved, hosts will receive a private streaming link. After the screening, viewers are encouraged to complete a brief survey to share their thoughts and reflections.

Hosting a watch party is a simple but powerful way to raise awareness and start important conversations about the realities and unmet needs of people with I/DD in North Carolina.

Learn more about the Unmet film

Upcoming NCCDD Webinars in October

The North Carolina Council on Developmental Disabilities (NCCDD) offers several monthly webinars to help you stay educated and informed. All meetings are free and open to the public. Stay informed and become involved in important conversations – there’s something for everyone in the I/DD community!

Policy Education Meeting

Thursday, October 9, 2025 from 10:30 a.m. to Noon

Learn about important updates about state and federal policies, budget developments, and other issues that affect people with intellectual and developmental disabilities (I/DD). There will also be time for questions and open discussion. Please note that NCCDD only provides public policy education. The Council does not lobby on specific legislation.

Register here: https://www.zoomgov.com/meeting/register/vJItdu-uqD8oHpxzFX9FiES_lSmk_8OP4r4#/registration

Self-Advocate Discussion Series: Getting Active in Advocacy

Wednesday, October 15, 2025 from 1 p.m. - 2 p.m.

This session is dedicated to North Carolina Disability Leadership Training Graduates. Join leaders with lived experience from the Ability Leadership Program of North Carolina, I/DD Peer Mentor Training Program, and members of the NC Advocacy Leaders Network (graduates from PIP, ASL, LEND, GRIP, STIR, and more) who will be spotlighted to share their stories about the training they have participated in and the advocacy experiences they engaged after training. Please join us to hear from some of the state’s finest and most successful advocacy leaders.

Register here: https://www.zoomgov.com/meeting/register/vJIscuqsqTIuHKmNsMe66wT4whwK0hPGVAM#/registration 

The Council Presents: Access to Achievement

Thursday, October 23, 2025 from 1 p.m. to 2 p.m.

In October, NCCDD welcomes Lindsay Tipton from Access to Achievement. Access to Achievement is a state-funded workforce training program empowering individuals with intellectual and other developmental disabilities (I/DD) to pursue their education and career goals with confidence.

The project provides:

  • Financial and benefits counseling,
  • Develops strategies for integrating assistive technology,
  • Maximizes access to credentials,
  • Increases orientation and integration of individuals with I/DD into the college community, and
  • Develops needs assessment, marketing, and evaluation tools.

Learn more by attending this webinar!

Register here: https://www.zoomgov.com/meeting/register/3IH21vtqTE2R5A5GeI3hXw#

BoletĂ­n en español 

Lea el boletĂ­n aquĂ­: Aspectos destacados & temas de septiembre de 2025

Newsletter in Accessible Audio

Listen to the audio version here or click on the image below: https://www.buzzsprout.com/2526321/episodes/17939118