UPCOMING EVENTS
Sat, Sept 14
9:00 AM*
Fragile X Foundation Board Meeting
Wed, Sept 18
7-8 PM
Sip & Chat
Sat, Oct 19
Annual Picnic
11:00 AM to 4:00 PM
Rain or Shine! Lake Mackintosh Park
Burlington, NC
Wed, Oct 16
7-8 PM
Sip & Chat
Sat, December 7
9:00 AM*
Fragile X Foundation Board Meeting
Direct Support Professional Recognition Week September 8 – 14, 2024
The week of September 8-14, the Fragile X and greater Disability Communities will be celebrating the thousands and thousands of amazing Direct Support Professionals (DSPs) all around the country and the support they give to us all! These are the people providing in-home and community-based services for individuals with intellectual and developmental disabilities (I/DD) and go on to empower them to live fully and inclusively in their own communities.
DSPs are the heart and soul of everything we are doing to help people with I/DD truly thrive. Please, find a way to recognize and thank that special DSP in your life in the coming weeks!
New Workforce Plan to Address Direct Support Professional Shortage
North Carolina Department of Health and Human Services (NCDHHS) has launched a multi-year Direct Support Professional Workforce Plan to address the critical shortage of DSPs in the state who provide critically needed in-home and community-based services for individuals with intellectual and developmental disabilities (I/DD).
"Direct Support Professionals play a critical role in helping individuals with I/DD live lives of their choosing in their communities," said Kelly Crosbie, MSW, LCSW, Director of the NCDHHS Division of Mental Health, Developmental Disabilities, and Substance Use Services. "We hope to create a workforce pipeline and the tools employers need to recruit and retain a strong, well-qualified DSP workforce.”
Launched July 1, the initiative is dedicated to connecting people with I/DD to better access and more choices for services and supports by developing a high quality, well trained DSP workforce. The plan includes strategies to improve recruitment, retention and training that focuses on several key initiatives during the first year of implementation:
- Awareness and Recruitment Campaign: Targeting high school and community college students, as well as people who are unemployed or underemployed, to educate them about careers in human services.
- Community College Pilot Program: A partnership with selected community colleges to develop and implement a DSP-specific curriculum and certificate program, including a scholarship component covering tuition and fees for participants.
- Provider Recruitment and Retention Grants: These grants will support provider agencies in enhancing their support structures to attract and retain DSPs.
In 2025, successful elements of the plan will be expanded and new strategies will be explored to create a statewide DSP directory and expand the partnerships with community colleges. The plan will be refined through ongoing community engagement and stakeholder feedback including the Direct Support Professionals Advisory Committee whose members have lived the DSP experience.
These initiatives hope to enable people with I/DD to live more independently and fully participate in the community of their choosing. For more details or a Spanish version, click here.
Registration Now Open! Annual 2024 Fragile X Picnic Set for Saturday, October 19
The NC Fragile X Foundation Board is pleased to host our annual Family & Friends Picnic. We look forward to seeing familiar and new faces!
Saturday, October 19, 2024, 11:00 AM to 4:00 PM
Rain or Shine! Lake Mackintosh Park Club House
2704 Huffman Mill Road, Burlington, NC 27215
Join us for a day to reunite and gather with our NC Fragile X community! Tim Field and his team will be back with another fun-filled celebration for all.
WHAT TO EXPECT:
- Catered BBQ Lunch (with Vegetarian and kid-friendly options)
- Scenic and Peaceful Location on the Lake
- Friendly Faces, both Familiar and New
- NCFXF Olympic Games!
Please share this invitation with friends, family, or community members who want to join in on the fun! Download a flyer for the event here.
Questions? Contact Tim Field at timfield2@gmail.com or 919-548-9760
Sip & Chat Zoom Calls Are Back!
Zoom calls returned in August and will now be held from 7-8 PM on the 3rd Wednesday of every month. Upcoming calls in 2024 are scheduled for Sep 18, Oct 16, Nov 20 and Dec 18. Connect with other Fragile X families to discuss topics of interest. Please note we have a new registration link. After registering, you will receive a confirmation email about joining the meeting. Click here to register with the new link.
Xtraordinary Bowl-a-Thon: A Striking Success for the North Carolina Fragile X Community
On Sunday, July 14, the North Carolina Fragile X Foundation (NCFXF) celebrated World Fragile X Day with our annual Xtraordinary Bowl-a-Thon at Rainbow Lanes Family Fun Center in Clayton, NC. From 3 to 5 PM, the lanes were alive with laughter, camaraderie and friendly competition as 50 registered bowlers, including several new families, joined us for the first time.
We extend our heartfelt thanks to Harmony Biosciences for sponsoring this year’s event. Their generous financial support made it possible to host an Xtraordinary event that brought our community together in celebration and support.
Special appreciation goes to Jennifer Keith, who outdid herself by providing all the balloons, decorations, and refreshments. Her eye-catching decorations and the delicious cakes added a festive flair, giving all our bowlers a sweet way to wrap up the day.
This year’s bowl-a-thon raised over $2,000 through sponsorships and generous gifts. These funds will allow the NCFXF to continue our vital work, including supporting families to attend the National Fragile X Conference and providing education and outreach to families who are just beginning their journey with a Fragile X diagnosis.
We want to express our deepest gratitude to everyone who volunteered, bowled, helped with logistics, and contributed to making this event a success. Your participation and support are what make our work possible. We couldn’t do it without you!
Dr. Lachiewicz Earns Lifetime Achievement Award
The Foundation’s own Dr. Ave Lachiewicz was presented the Professional Lifetime Achievement Award for her sustained and generous dedication to the Fragile X community at the International Fragile X Conference in July.
During her illustrious career, Lachiewicz founded the NC Fragile X Clinic at Duke and served as its medical director for many years. She was an early and active member of the NFXF’s Fragile X Clinical and Research Consortium and was instrumental in writing and/or reviewing numerous family-friendly Treatment Recommendations. She has also been a regular participant and speaker at the International Fragile X Conference and is fondly admired by the many families she has served over the years.
“We are proud and thrilled that her efforts and dedication have been recognized with this prestigious award,” Renee Duffee Clark, Foundation Secretary and Board Member, said in offering her congratulations to Lachiewicz.
Available Now! Vital Support Services for People with I/DD
Effective July 1, everyone with Fragile X can receive Respite Care, Community Transition, Community Living Support, Transitional Support, Supported Employment and Job Training services if they are not yet covered by an Innovations Waiver.
Parents, caregivers, siblings or individuals with Fragile X should see if their family is eligible for 1915(i) services now!
If you’re on the waitlist for the NC Innovations Waiver or TBI Waiver, you can get these services without losing your spot.
If you get similar services through the “1915(b)(3) waiver” program, they are now moving to the 1915(i) waiver. To keep getting those services after June 30, 2024, you might need to do an assessment. Contact your LME/MCO health plan, listed below, to make sure your services continue.
- Alliance Health, 1-800-510-9132, TTY: 711 or 1-800-735-2962
- Partners Health Management, 1-888-235-4673, TTY/English: 1-800-735-2962, TTY/Spanish: 1-888-825-6570
- Trillium Health Resources, 1-877-685-2415, TTY: 711
- Vaya Health, 1-800-962-9003, TTY: 711
For more details or a Spanish version, visit https://medicaid.ncdhhs.gov/1915i