UPCOMING EVENTS
May 2
6:30 PM
I/DD Town Hall
Charlotte
May 3
10 AM to 2 PM
AT Resource Fair
Charlotte
May 15
Noon to 1 PM
Sip & Chat
June 19
Noon to 1 PM
Sip & Chat
July 1
Tailored Plans Launch
July 14
3 to 5 PM
Bowl-a-Thon
Rainbow Lanes
Clayton, NC
Tune in at Noon for Next Sip & Chat – May 15
Upcoming Dates
May 15, Noon
June 19, Noon
No Call in July
August 21, 7 PM
Please Note: We will be returning to 7 to 8 PM for our Sip & Chat calls in August! Our May and June Sip & Chat calls will be the last ones held from Noon to 1 PM. We’ll take the month of July off and resume calls August 21 at 7 PM. 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 and connect with other Fragile X families to discuss topics of interest.
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.
NC Fragile X Members Attend NFXF Advocacy Day in February 2024
Eleven representatives from North Carolina attended the 20th National Fragile X Foundation (NFXF) Advocacy Day in Washington, DC on February 26 and 27 and its effect was impactful.
“It was eye opening to see that many people from across the country advocating for people with Fragile X,” Juan Molliendo, NC Fragile X Foundation board member said. “On the two day trip, the first day included a half day training session to prepare for our meetings the next day.”
The second day started with a tour of the Capitol by former congressman Gregg Harper and was followed by a series of scheduled meetings that included Senator Thom Tillis and Congressional Representatives Deborah Ross, Wiley Nickel and Dan Bishop.
The advocates brought a strong message to each meeting centered on:
- Increasing awareness and understanding of Fragile X and the number of individuals and families it impacts in North Carolina.
- Continued funding for research facilities at CDC, Department of Defense and the National Institutes of Health
- How Medicaid expansion is so badly needed in the intellectual and developmental disability communities.
Accompanied by his wife and 14-year-old daughter with Fragile X, Evemarie, he was happy his daughter got to see what happens in Congress at the same time she was studying these subjects in social studies at school.
“It was empowering, the two days I spent in Washington and more people should be a part of this kind of advocacy, be involved . . . . it was a surreal experience” Molliendo said.
“Don’t just think about today, think about the future. As your kid ages, what’s next, how can we provide for them, help them?” he wondered. “Eventually, we are going to age, we have to have a plan in place to help them be successful that’s how the system can help them.”
Representing North Carolina were Steve Strom, President of NC Fragile X Foundation, Juan Molliendo, Jessica Betanco and their daughter Evemarie Molliendo, Brittany Tillman and her son Miles, Stephen O’Quinn of Wake Forest, and Sarah Tamura and her son David, Patricia Macpherson and Evelma Covington.
NCCDD to Host I/DD Town Hall May 2nd!
The North Carolina Council on Developmental Disabilities will host I/DD Town Hall: Key Priorities for Developmental Disabilities in North Carolina on May 2nd at 6:30 PM in Charlotte, NC at the DoubleTree by Hilton Charlotte Airport. The event will also be held online via Zoom.
The town hall will feature leaders and lawmakers who are excited to meet and learn from individuals and families in Charlotte. NCCDD is excited to welcome:
- Kelly Crosbie, Director, DMH/DD/SUS
- Ginger Yarbrough, I/DD, TBI & Olmstead Section Chief, DMH/DD/SUS
- Rep. John Bradford (District 98 - Mecklenburg)
- Rep. Terry Brown (District 92 - Mecklenburg)
... and more!
Spanish translations, CART, and American Sign Language will be available.
NCDHHS Hosting Assistive Technology Resource Fair May 3
AT Resource Fair
May 3, 10 AM to 2 PM
Charlotte Vocational Rehabilitation Office
5501 Executive Center Dr
Charlotte, NC
NCDHHS is hosting an assistive technology (AT) resource fair showcasing adaptive equipment and resources to make recreational and leisure activities more accessible to people of all ages. Those interested in accessible recreation, sports, leisure activities and active living are encouraged to attend. Attendees will learn about assistive technology used for recreation, get hands-on experience with accessible equipment and connect to local resources.
The AT fair, which is being presented by NCDHHS' Assistive Technology Program, is open from 10 a.m. to 2 p.m. on May 3 at the Charlotte Vocational Rehabilitation Office, 5501 Executive Center Drive in Charlotte. Attendees can register online or onsite upon arrival and the fair is free and open to the public.
Welcome to – We Will Walk With You
We Will Walk With You (WWWWY) is an organization helping families of children with disabilities thrive in community. They host guest speakers to discuss perspectives and resources that may be helpful to youth or young adults with disabilities and their parents and siblings. Each month, they offer opportunities for you to learn, discuss and interact with topics that can help your family. Read more about their events here.
In March, North Carolina's Health and Human Services (NCDHHS) launched Inclusion Connects, a first-of-its-kind initiative in NC to help connect people with intellectual and developmental disabilities (I/DD) and their families with community-based services essential to supporting their health and well-being.
NCDHHS is working with experts, stakeholders and people with lived experience to develop a centralized resource that lists the services currently available for people with I/DD. Go to the Inclusion Connects website to find housing resources, contacts for support staff who can help people navigate the process and ways to support the Direct Support Professionals workforce.
In NC, there are more than 200,000 people with developmental disabilities. Inclusion Connects aligns with NCDHHS’ commitment to enhance community-based supports in North Carolina to ensure every person can live a fulfilled and integrated life within their chosen community.
The Inclusion Connects initiative will continue to grow as more resources are added to the website. For feedback or questions, contact NCDHHS via email at dmhiddcontact@dhhs.nc.gov.
Tailored Plans Coming July 1 – What You Need to Know and Do
Tailored Plans launch on July 1 and you need to know what to do to assure the ongoing care of those with intellectual and developmental disabilities.
First, there are now only four health management companies offering Tailored Plans in North Carolina – Alliance Health, Partners Health Management, Trillium Health Resources and Vaya Health. Each of these companies serves a specific area of the state and all the people with disabilities in their service area. Make sure you know which company serves your area – to find your county click on the map below:
Tailored Plans include services for people with serious mental health issues, substance use issues, intellectual and developmental disabilities, and traumatic brain injury. People with NC Medicaid Direct who receive these services may be moved to a Tailored Plan.
So what does that mean to our Fragile X community?
There is a lot of information provided by NCDHHS and NC Medicaid about Tailored Plans. The NC Fragile X Foundation wants to simplify that information for our community. We will also give you access to links directly from these sources to provide more details.
What You Should Know (Important Dates to Remember)
Mid-April 2024: Expect a letter in the mail if your Medicaid plan is going to change to a Tailored Plan. The letter will tell you which Tailored Plan you are in (Vaya, Partners, Alliance or Trillium) which is based on the county where you get your Medicaid benefits. The letter will also tell you how to pick a local primary care provider (PCP) in your area – each company will have a list of primary care organizations for you to choose from on their website. If you are already receiving primary care services, you should check to see if your local provider is in your Tailored Plan company’s network.
May 15, 2024: This is the last day to pick a primary care provider (PCP). If you do not pick a PCP, one will be assigned to you. You can still change your PCP later.
May 16, 2024: You can start scheduling non-emergency medical transportation (NEMT) for appointments on or after July 1, 2024. Call your Tailored Plan to schedule rides.
Late May 2024: A welcome packet and new member health plan ID card will be mailed from your Tailored Plan. Your primary care provider (PCP)’s information will be included.
July 1, 2024: Tailored Plans begin! Start seeing providers (doctors and specialists) in your Tailored Plan’s network.
What You Should Do (before July 1, 2024)
- Know which health care management company provides your Tailored Plan
- Pick a Primary Care Provider (PCP) by May 15, 2024
- Check if your providers are in your Tailored Plan
- Ask About your Tailored Care Manager
- Update your address if needed
Click here to get detailed information on each of the five items above.
State officials hope the four consolidated health care management companies can provide a successful launch of Tailored Plans and effectively streamline mental health, developmental disabilities or substance use services across the four regions of North Carolina. For more information on Tailored Plans, visit: https://medicaid.ncdhhs.gov/tailored-plans
Medicaid Expands Eligibility for Special Services Via 1915(i)
Medicaid allows enrollees to obtain home and community-based services (HCBS) in their area to encourage full community integration. To better serve Medicaid enrollees with significant behavioral health needs and intellectual/developmental disabilities (I/DD), local service providers are expanding the eligibility for some very important services through 1915(i) with the arrival of Tailored Plans. These services may be available if your family member is on the Registry of Unmet Need for the Innovations waiver.
To qualify for 1915(i) benefits, an individual must obtain an independent assessment to determine eligibility for services from your health management company (Vaya, Partners, Alliance or Trillium). The assessment will be used to develop a Care Plan for individuals with behavioral health needs or an Individual Support Plan (ISP) for individuals with an intellectual or developmental disabilities or traumatic brain injury (TBI) throughout state.
Before the July 1st Tailored Plan launch, the health management companies (formerly LME/MCOs) are responsible for completing the 1915(i) assessment and Care Plan/ISP for their members. These independent assessments and care plans must be conducted by a care manager/care coordinator and, after the launch, the organization where an individual obtains tailored care management is then responsible for completing the assessment and care plan.
If someone with intellectual or developmental disabilities, traumatic brain injury or substance issue is not currently getting Medicaid and/or extended services, contact your local health management company (see below for contact info) for an assessment.
- 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
Save the Date! Fragile X Bowl-a-Thon – July 14
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, Clayton, NC on Sunday, July 14 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! Advance registration is encouraged, so look for registration info coming soon!
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