UPCOMING EVENTS
Wed, Jan 15
7-8 PM
Sip & Chat
Wed, Feb 19
7-8 PM
Sip & Chat
February 24-25
National Fragile X Advocacy Day
Washington, DC
Sat, March 8
9:00 AM - Noon
Fragile X Foundation Board Meeting
Wed, March 19
7-8 PM
Sip & Chat
From the North Carolina Fragile X Foundation
Unlocking Health Coverage: The NC HIPP Program
Are you struggling to keep up with health insurance premiums due to high medical costs? The North Carolina Health Insurance Premium Payment (HIPP) program might be the solution you need!
What is the NC HIPP Program? The NC HIPP program, administered by the North Carolina Department of Health and Human Services, helps eligible Medicaid recipients pay for their private health insurance premiums. This program is designed for those who have high-risk illnesses and cannot afford their insurance premiums. By covering these costs, the HIPP program ensures that individuals and families can maintain their private health insurance coverage. You can cover your whole family with your employer health insurance, including your child who is Medicaid eligible!
Who is Eligible? To qualify for the NC HIPP program, you must:
- Be eligible for Medicaid
- Have private health insurance through an employer
- Be at risk of losing your private health insurance due to high medical costs
How to Apply Applying for the NC HIPP program is straightforward. You can visit the official website at MyNCHIPP.com to find more information and access the online application. For questions or assistance, you can contact the NC HIPP program at:
- Phone: 1-855-696-2447
- Email: CustomerService@MyNCHIPP.com
Why Participate? For parents of children with Fragile X Syndrome, participating in the NC HIPP program can provide peace of mind by ensuring that your health insurance premiums are covered, allowing you to focus on what matters most – your child's health and well-being. The financial relief provided by the HIPP program can help you access necessary therapies, medical treatments, and support services without the added stress of unaffordable insurance premiums.
You can apply for the NC HIPP program at any time. If you qualify for NC HIPP, you can update your employer health insurance coverage immediately. This is considered a qualifying event so you do not have to wait until the next open enrollment period.
Preparing for Emergencies: A Guide for Families with Children with Disabilities and Seniors with Mobility Issues
The devastating impact of Hurricane Helene this fall has reminded our community of the importance of being prepared for emergencies. For our families with children with Fragile X Syndrome, and seniors with mobility issues such as FXTAS, having a plan in place is crucial.
Why Prepare? Emergencies can disrupt daily routines, access to essential services, and even the safety of your home. Being prepared can help minimize stress and ensure that everyone's needs are met during a crisis.
Key Steps to Prepare
- Create an Emergency Kit: Include essential items such as medications, medical supplies, non-perishable food, water, and important documents.
- Develop an Emergency Plan: Identify safe places to go, establish communication plans, and practice evacuation routes.
- Stay Informed: Keep up-to-date with local news and weather forecasts. Sign up for emergency alerts from local authorities.
- Special Considerations for Fragile X Syndrome:
- Routine: Maintain a sense of routine as much as possible. Bring familiar items to help comfort and calm your child.
- Communication: Use visual aids or social stories to explain the situation and what to expect.
- Support: Ensure that caregivers and support staff are aware of the plan and can assist during an emergency.
Resources for More Information:
- North Carolina Emergency Management:
- Access and Functional Needs Toolkit for Emergency Managers: This toolkit provides comprehensive guidelines and checklists to help emergency managers integrate people with access and functional needs into all phases of emergency management.
- Functional Assessment Support Teams (FAST): FAST responders assess individuals for additional supports and resources they may need in a shelter, such as wheelchairs, walkers, and personal care assistants.
- Accessibility in Shelters: Emphasis on making emergency shelters ADA accessible with a Shelter Worker Accessibility Checklist.
- Agency/Organization Disaster Readiness: Recommendations for developing continuity plans to ensure services for people with disabilities are maintained.
- Visit the NC Emergency Management website for detailed information.
- FEMA:
- Disaster Preparedness for People with Disabilities: Offers comprehensive guides on emergency preparedness, financial assistance, and recovery resources.
- Check out the FEMA Disaster Preparedness page.
- North Carolina Council on Developmental Disabilities:
- Emergency Preparedness Initiative: A partnership with North Carolina Emergency Management (NCEM) to create an inclusive disaster preparedness program.
- Functional Needs Plan: Emphasizes planning for what you need to stay safe, healthy, and independent during or after an emergency.
- ReadyNC: Offers comprehensive resources on emergency preparedness.
- Disability and Disaster Hotline: Provides a hotline (800-626-4959) for assistance during disasters.
- Collaboration with County Emergency Management Offices: Encourages joint planning and inclusion of self-advocates.
- Visit the NCCDD Emergency Preparedness page for more information.
Additional Helpful Resources:
- CDC Emergency Preparedness for People with Disabilities: Resources to help you feel more prepared and safer during emergencies.
- Office of Access and Functional Needs: Guidelines and resources for individuals with disabilities during emergencies. Check out the Office of Access and Functional Needs.
Additional Tips:
- Relocation: If you need to relocate, consider staying with family or friends, or look into hotels that accommodate special needs.
- Utilities: Know how to shut off utilities like gas, water, and electricity in case of an emergency.
Being prepared can make a significant difference in how you and your loved ones handle an emergency. Take the time to create a plan and gather resources now, so you're ready when the unexpected happens.
Support the North Carolina Fragile X Foundation with a Year-End Gift
As the year comes to a close, we invite you to consider making a year-end gift to the North Carolina Fragile X Foundation. Your generosity can make a significant impact on the lives of individuals and families affected by Fragile X Syndrome.
Why Give? Your donation helps us provide essential services, support research, and raise awareness about Fragile X Syndrome. Every contribution brings us closer to improving the quality of life for those impacted by this condition.
How to Donate Making a donation is easy! Visit the NC Fragile X Foundation donation page to contribute. You can choose to make a one-time gift or set up a recurring donation to support our ongoing efforts.
Maximize Your Impact with Employer Matching Gifts Many employers offer matching gift programs, which can double or even triple the impact of your donation. Check with your HR department to see if your company participates in a matching gift program and follow their guidelines to submit your request.
Together, We Can Make a Difference Your support is invaluable to our mission. By giving this holiday season, you help us continue our work and expand our reach. Thank you for being a part of our community and for your commitment to making a positive impact.
Steve Strom Chosen as Hub Member for 2025 ECHO Program
We are excited to announce that Steve Strom, President of the North Carolina Fragile X Foundation, has been selected to participate in The Arc of North Carolina and The Autism Society of North Carolina's 2025 ECHO (Extension for Community Health Outcomes) program as one of the hub members.
What is ECHO? ECHO is a collaborative model of medical education and care management that uses video-conferencing technology to connect experts with primary care providers and other health professionals. This model helps to increase access to specialty treatment in rural and underserved areas. The goal is to provide the same level of healthcare to patients regardless of their location.
Steve Strom's Role As a hub member, Steve will be instrumental in supporting the unique needs of individuals with Fragile X Syndrome and other intellectual disabilities. As a parent to a son with Fragile X and a professional in the field, his lived experience and work in the nonprofit and government sectors, particularly in services for children and adults with intellectual and developmental disabilities, makes him an ideal candidate for this role.
Impact on the Community Steve's participation in this upcoming ECHO cohort will help to ensure that individuals with Fragile X Syndrome and other intellectual disabilities receive the specialized care they need. By leveraging his expertise and the resources of the North Carolina Fragile X Foundation, Steve will contribute to improving the quality of life for those impacted by these conditions.
About Steve Strom Steve Strom has been part of the NC Fragile X Foundation board since 2017. He and his wife, Teresa, are parents to an adult son with Fragile X Syndrome. Steve works for NC Medicaid as the director of the Money Follows the Person Demonstration Project (MFP). In his spare time, he enjoys training with his running club, The Raleigh Galloway Group.
Join the National Fragile X Foundation Advocacy Day in Washington, D.C.!
The National Fragile X Foundation (NFXF) is hosting its annual Advocacy Day on February 24-25, 2025, in Washington, D.C. This event brings together families, self-advocates, caregivers, siblings, doctors, and researchers to advocate for the entire Fragile X community. By sharing your personal stories, you can help raise awareness, educate, and advocate for continued funding and supportive policies.
Photos from the 2024 NFXF Advocacy Day
Why Participate?
Advocacy is a powerful tool for driving change. You don’t need to be an advocacy expert! The NFXF provides all necessary training, materials, and meeting scheduling to ensure you are well-prepared. We want to have a large group of North Carolina families to participate in 2025. In a pivotal year, funding decisions at the federal level could have an impact on the Fragile X research and Medicaid services for individuals with disabilities. Your voice matters, and by participating in Advocacy Day, you can help shape policies and influence funding decisions that will improve the lives of individuals with Fragile X syndrome and their families.
Covering the Costs
We understand that attending such events can be financially challenging. Here are some ways to help cover the costs:
- NFXF Scholarships: The NFXF offers scholarships to assist individuals and families with limited financial resources. Scholarship applications are being accepted through December 16, 2024. For more information, visit the NFXF website.
- Jean Wolff-Rossi Fund for Participant Involvement: The North Carolina Council on Developmental Disabilities (NCCDD) offers the Jean Wolff-Rossi Fund to help cover expenses for seminars and conferences. This fund can reimburse costs for child care, personal assistance services, hotel/lodging, and transportation. For more info and to apply, visit the NCCDD website.
Innovations Waiver: If you have the Innovations Waiver, you can ask your care coordinator for funding to cover the costs of attending Advocacy Day. Your care coordinator can provide guidance on how to request these funds.
Innovations Waiver Funding Ideas to Cover Conference Attendance
- Natural Supports Education (S5110, S5111)- Provides funding for family members of waiver recipients for educational opportunities such as conferences.
- Individual Goods and Services (T1999) - Provides funding for waiver recipients that could be used for opportunities such as attending conferences.
- Community Networking Class/Conference (H2015 U1) - Provides funding for waiver recipients that could be used for opportunities to attend meetings and conferences that are also attended by non-disabled peers.
- Employer Supplies (T2025 U2) - Provides funding for staff and the employer to attend training and conferences.
- Accrued Funds – For families who use self-direction for the Innovations waiver services, check with your care coordinator and/or your fiscal agent (Accumen or Secure Direction). Your community guide can help you write a request to update your Individual Service Plan (ISP) or utilize your accrued funds. Remember that decisions for approval take about 2 weeks so plan accordingly.
How to Apply
To apply for the Jean Wolff-Rossi Fund, visit the NCCDD website and complete the application form. Make sure to submit your application at least 15 days before the event for in-state events and 30 days for out-of-state events. For more details, visit the NCCDD website.
Join Us!
Don't miss this opportunity to make a difference for the Fragile X community. Your participation can drive significant change and help create a better future for individuals with Fragile X syndrome. For more information and to register, visit the NFXF website.
Join us in 2025 for Sip & Chat Zoom Calls!
Zoom calls next year will be held from 7-8 PM on the 3rd Wednesday of every month. Upcoming calls in 2025 are scheduled for Jan 15, Feb 19, March 19, April 16, May 21 and June 18. Connect with other Fragile X families to discuss topics of interest. After registering, you will receive a confirmation email about joining the meeting. Click here to register.
2025 Dates for Foundation Board Meetings
Upcoming Board Meetings will be held:
- March 8, 2025,
9:00 AM to Noon - June 14, 2025,
9:00 AM to Noon - September 13, 2025,
9:00 AM to Noon - December 6, 2025,
9:00 AM to Noon
Anyone interested is welcome to attend NC Fragile X Foundation board meetings in the calendar of events below either in person or via zoom. At the start of each meeting, the board opens the floor for public comments, so please be prompt and limit your comments to the designated public comment time.
The Zoom link for quarterly board meetings is:
https://us06web.zoom.us/j/89428474878?pwd=KTnp0zm2b796NMYYuJ2M23aTjkhF07.1
Meeting ID: 894 2847 4878
Passcode: 408244
Location: 921 Morreene Rd, Durham, NC 27705