Fragile X Foundation Newsletter March/April 2023
Tailored Plan Launch Delayed to October 1
New tailored healthcare plans are being made possible through North Carolina’s Medicaid expansion and are expected to improve quality of care and services provided for people with intellectual/developmental disabilities (I/DD), mental health disorders, substance use disorders or traumatic brain injuries (TBI). The launch was scheduled for April 1 and is now targeted for Oct. 1, 2023 to ensure a smooth transition for people using the plans and their care providers. Until the Tailored Plans launch, people who will be covered by the Tailored Plans will continue to receive care through their existing plans. Tailored Care Management, which launched on Dec. 1, 2022, will continue to support these beneficiaries by providing a care team to coordinate care across providers.
Individuals being served by Tailored Plans often have complex behavioral and physical health needs and, as a result, their care is often more complex. These are integrated health plans designed to improve care management. Plans rely on a community-based, provider-driven model that cares for the whole person and drives members toward better health outcomes. The new tailored plans will cover physical health services, pharmacy services, care coordination and care management, behavioral health services, and added services, such as wellness programs.
Anyone who has Medicaid benefits will automatically be assessed for a Tailored Plan and will be auto-enrolled while others will be able to opt-in to a Tailored Plan. In the coming months, beneficiaries will receive a notice from the NC Medicaid Enrollment Broker letting them know about Tailored Plans.
On October 1, 2023, qualified members will begin to receive health services from their Tailored Plan which, in North Carolina, are available through Alliance Health, Eastpointe, Partners Health Management, Sandhills Center, Trillium Health Resources and Vaya Health. Alliance Health is the only Tailored Plan that currently offers TBI Waiver services.
For more information, visit https://medicaid.ncdhhs.gov/Behavioral-Health-IDD%20Tailored-Plans
Annual Fragile X Picnic has new Family Chairs – Event Set for October 7, 2023, 11 AM - 4 PM
Tim Field and his wife, Estela have volunteered to be the Family Chairs of the 2023 NC Fragile X Foundation picnic and are planning the event for October 7 at Lake Mackintosh Park in Burlington from 11 AM to 4 PM – put it on your calendar! After attending last year’s picnic, they and their extended families wanted to get more involved in the Fragile X Community and stepped forward and volunteered to chair this year’s picnic.
“We’re excited to support the foundation and its annual picnic,” Tim said. With over 27 family members working on it, Tim expects there to be lots of fun, games and activities and hopes to give old friends and new families a chance to get together and enjoy a day at the lake.
Thank you Deby: Special thanks to Deby Burgess who chaired the picnic for many years and is now helping Tim and his team plan this year’s Xtraordinary event. Watch for more details to come.
2023-2024 Xtraordinary Campaign
There is something Xtraordinary about our sons and daughters with Fragile X, and to emphasize the point, the Foundation is considering a new branding campaign to energize our youngsters and families with something positive, memorable and distinctive. The Board is seeking community comments about creating a “Fragile X Makes Me Xtraordinary!” branding campaign.
The Board’s thinking is that there are Xtraordinary people and families with Fragile X who have Xtraordinary needs – supports, specific waivers, clinical services, genetic counseling and continuing research. And, at the same time, people with Fragile X offer Xtraordinary personalities and talents to be admired and appreciated. As Fragile X is not commonly known in medical, education and government circles, a strong brand like this will help make Fragile X more distinctive and more memorable.
This newsletter illustrates how this campaign might unfold in the coming months and the board is asking for comments, positive or negative, about this idea. The Board’s biggest concern is that the phrase and campaign are perceived as being positive in nature and memorable; that it creates a strong, positive distinction for the Fragile X community, and sets our activities and projects apart from other organizations.
Comments Welcome: Click Here to send your thoughts and comments.
Save the Date! Xtraordinary Fragile X Bowl-a-Thon – Sunday, July 23 from 3:00 PM to 5 PM
In celebration of World Fragile X Day and the NC Fragile X community, the Foundation proudly announces this year’s Xtraordinary Bowl-a-Thon at Rainbow Lanes Family Fun Center, 850 NC-42, Clayton, NC on Sunday, July 23 from 3 to 5 PM. Everyone is encouraged to form a team with families and friends to raise funds for the Foundation and to compete for the coveted Bowl-a-Thon championship trophy!
Onsite registration and check-in for pre-registered teams will begin at 2:00 PM, Sunday afternoon. Advance registration is encouraged so look for registration instructions in the next two weeks.
Coming Soon! Monthly Facebook Live Sip & Chats
The Foundation is excited to sponsor a new monthly one hour Facebook live event called “Sip and Chat.” This Xtraordinary virtual gathering will provide a time for families to connect and discuss a topic of interest such as IEP planning, what services are available while on the Innovations waiting list, sharing local resources for our Fragile X family members, etc. Look for an e-mail and an announcement on our Facebook page coming soon!
2023 Advocacy Day Asks
NC Fragile X Foundation President Steve Strom was part of the enthusiastic North Carolina delegation to the National Fragile X Advocacy Day in Washington DC in March. Over the past 19 years, Fragile X Advocates have helped secure more than $500 million in federal funding for Fragile X research and programming in efforts to improve the lives of those living with Fragile X and other intellectual and developmental disabilities.
Advocates were encouraged to share their personal stories with their Congressional representatives, asking them to continue supporting over $50M/year in ongoing Fragile X research at the NIH, CDC and the DOD. In addition, advocates were asking for expanded access to telemedicine beyond the pandemic response which will allow every family with Fragile X to access a clinic and medical expertise without significant travel costs.
And The Survey Says!
In January, everyone was given the opportunity to complete a questionnaire about their personal needs or the needs of the Fragile X community – an Xtraordinary thank you to all those who responded. You can find a synopsis of the results below:
And the Survey Says! Results
In January 2023, everyone was asked to complete a questionnaire about their needs or concerns in dealing with Fragile X. Some of the highlights:
- Top two concerns: how to find and how to fund support services needed by people with Fragile X.
- Concern #3: creating a better understanding of programs and services as the MCOs transition to Tailored Plans, and close behind at #4: clinical therapies and educational services for people with Fragile X.
- In the comment section, it is obvious people see a need to connect with other Fragile X families but the majority (55%) feel that two events a year is the right number, another 33% thought more events were needed and 11% thought it was too many.
Some of the written comments include:
- “Using Best buddies or finding volunteers to keep in touch via zoom with adult girls and boys on weekly basis and outlet to learn, share and keep up with adult life changes.”
- “Providing more support to families recently diagnosed with FMFX and carriers. Also, have events where we can create more activities for kids, socializing activities and families. Have volunteering events where kids can be part of it.”
- “Perhaps the Foundation can find ways to connect to families that cannot travel to the Triangle area. Regional events? Virtual events?”
- “Is there a way for families to network as a NC group through social media? FB? So we could get to know each other, and NC specific issues/resources?”
Have something to add? If so, Click Here and your comments will be forwarded to the Board of Directors. You are also welcome to attend the next board meeting on June 10 via Zoom or in person and address the board under public comment. Click Here to see details regarding attendance to board meetings.
Upcoming 2023 Events
Foundation Board Meetings
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. Click Here to see details regarding attendance to board meetings.
June 10, 2023, 9:00 AM
NC Fragile X Foundation Board Meeting and Annual Meeting
Click Here to see details regarding attendance to board meetings.
World Fragile X Day, Saturday, July 22, 2023!
Every year, the NC Fragile X Foundation celebrate World Fragile X Day with communities around the world. Join us in commemorating the advancements in research as we seek effective treatments and ultimately a cure for Fragile X. Look for more details to come. (Governor’s proclamation!)
Sunday, July 23, 3:00 PM to 5 PM
Xtraordinary Bowl-a-Thon
Rainbow Lanes Family Fun Center, 850 NC-42, Clayton, NC
Onsite registration & check-in opens at 2 PM, Advance Registration coming soon!
September 9, 2023, 9:00 AM
NC Fragile X Foundation Board Meeting
Click Here to see details regarding attendance to board meetings.
Saturday, October 7, 2023, 11:00 AM to 4:00 PM
Annual Fragile X Picnic
Lake Mackintosh Park Club House, 2704 Huffman Mill Road, Burlington, NC
December 9, 2023, 9:00 AM
NC Fragile X Foundation Board Meeting
Click Here to see details regarding attendance to board meetings.