UPCOMING EVENTS
February 26 & 27
20th NFXF Advocacy Day
Washington, DC
March 7
4 to 6 PM
Triad Listening Session
March 20
Noon to 1 PM
Sip & Chat
April 17
Noon to 1 PM
Sip & Chat
May 15
Noon to 1 PM
Sip & Chat
June 19
Noon to 1 PM
Sip & Chat
Next Sip & Chat Call – March 20 at Noon!
Upcoming Dates
Wednesdays at Noon
April 17, May 15, June 19
Remember that we are now holding our Sip & Chat calls from Noon to 1 PM through the month of June. Please register in advance here and you will receive a link to the Zoom meeting.
Mark your calendar for the 3rd Wednesday of every month at Noon. You are welcome to join the call to discuss whatever is on your mind.
To view information shared during past Sip & Chats, use this link: Sip & Chat Notes. Some of the resources are also shared on the NCFXF Facebook page here.
Will You Make a Difference? Apply for the NCFXF Board!
Do you have ...
- A passion for education and advocacy
- A family member with Fragile X
- 4-8 hours per month
- Enthusiasm for social networking, online and offline
- Experience or connections in social networking, law, social justice, event planning, finance, strategic planning, fundraising or other skills
- The desire to make a difference?
The mission of the NCFXF is to improve the quality of life for those impacted by Fragile X.
If you are interested in learning more, or want to apply for the Fragile X Foundation Board, visit ncfragilex.org/about-us/#foundation-board or email info@ncfragilex.org
20th NFXF Advocacy Day, Washington, DC
February 26 & 27, 2024
The 20th National Fragile X Foundation (NFXF) Advocacy Day is planned for February 26 - 27, 2024 in Washington, DC. Nearly 100% of Congressional offices are accepting in-person meetings. Congressional offices are now offering a hybrid option with some Advocates in-person and some virtual in the same meeting.
Training
Training will include a combination of mandatory online self-paced training ahead of time and group training/preparation at the Hilton Arlington Towers Hotel on the afternoon of Monday, February 26. They will also be hosting a virtual Zoom meeting earlier in the month of February for new or returning advocates.
Agenda
- Monday, February 26th: Afternoon training and reception
- Tuesday, February 27th: Meetings at Capitol Hill
Registration for this event ended February 8, 2024.
Appendix K Flexibilities APPROVED for Innovations and TBI Waivers
The Centers for Medicare and Medicaid Services (CMS) recently approved North Carolina Medicaid to continue certain Appendix K flexibilities in the 1915 (c) Innovations Waiver and Traumatic Brain Injury (TBI) Waiver amendment, effective March 1, 2024.
CMS allows states to use Appendix K during emergency situations. During the public health emergency, it was used to support waiver members to remain safe in their communities during the public health emergency.
Some Appendix K flexibilities will end Feb. 29, 2024. NC Medicaid will work with the LME-MCOs to support members in transitioning from the Appendix K flexibilities that will be discontinued in the Innovations and TBI Waiver amendments by March 1, 2024.
For more information on flexibilities approved for the Innovations and TBI waivers, please see the NC Medicaid Innovations Waiver webpage.
Roadmap to Strengthen NC’s Caregiving Workforce; Funding to Support DSPs
North Carolina's Health and Human Services and Commerce leaders have released a report announcing a plan to strengthen the state's caregiving workforce. The report was developed by the Caregiving Workforce Strategic Leadership Council, a group convened by NCDHHS, the Department of Commerce, educational institutions and other key organizations deeply engaged in health care.
Following the state’s greatest areas of need, the Council chose to focus on three areas: nursing, behavioral health and direct care professionals. North Carolina faces significant shortages of all three professions, in particular behavioral health, in which 94 out of 100 counties have a shortage of mental health professionals.
The action steps in the report cover several different targeted areas, including enhancing data collection to better understand the need, increasing the availability of loan repayment programs and apprenticeships and expanding access to training.
In 2023, NCDHHS commissioned a study by NC Area Health Education Centers (AHEC) to make recommendations to enhance the direct care workforce. The report and recommendations, which address the shortage of Direct Care Workers (DCWs), including Direct Support Professionals (DSPs), are now also posted on the NCDHHS website. Late last year, NCDHHS announced a rate increase to enable providers to increase wages for DSPs they employ. Read more about how NCDHHS is helping to support direct support professionals.
Read more about the next steps and implementation for nursing, behavioral health and direct care professionals in a news release and the report.
This article was originally published in NCDHHS News, January 26, 2024.
First In-Person Regional Listening Session hosted by The Arc of NC Set for March 7
Triad Event Details
Date: March 7, 2024
Time: 4-6 PM
Location:
Deep River Friends Meeting House
5300 West
Wendover Avenue
High Point, NC 27265
The North Carolina Fragile X Foundation recognizes and celebrates The Arc of North Carolina's 70 years of being a voice for families in North Carolina. Many of our Fragile X families have also been part of the grassroots movement of The Arc. As part of this grassroots movement, The Arc of North Carolina is traveling around the state and listening to families and self-advocates. They want to know: What are your most pressing concerns? What issues does The Arc of NC need to make sure they are addressing?
Join The Arc of North Carolina as they hit the road and host four different in-person regional listening sessions in 2024.
The Arc thanks its local chapters in Greensboro and High Point for their partnership with this event.