UPCOMING EVENTS
Wed, June 19
Noon to 1 PM
Sip & Chat
July 1
Tailored Plans Begin
July 1
Public Comment due for NC DMH/DD/SUS Strategic Plan
July 14
3 to 5 PM
Bowl-a-Thon
Rainbow Lanes
Clayton, NC
Monday, July 22
North Carolina Fragile X Awareness Day
July 25 - 28
19th NFXF International Fragile X Conference
Renaissance Sea World, Orlando
Wed, August 17
7-8 PM
Sip & Chat
Saturday, September 14
9:00 AM*
Fragile X Foundation Board Meeting
Celebrate Fragile X Awareness Month in July!
Improving Access to Healthcare for North Carolina’s Fragile X and Disability Communities
2024 Fragile X Awareness Month (July) and Day (July 22) are the time to celebrate new programs that are improving access and quality of healthcare for North Carolina’s Fragile X and disability communities. Please be aware of and participate in the following innovations from the state of North Carolina:
Medicaid Expanded in December 2023
North Carolina expanded Medicaid in December 2023 to cover adults ages 19 through 64 earning up to 138% of the federal poverty line (about $1,730 for singles and $2,970/month) for a family of three.
New Tailored Medicaid Plans Begin on July 1
In addition to Medicaid expansion, people with disabilities can now enroll in new tailored Medicaid plans that assess and arrange for the medical or community based support services needed based on an individual’s disability. Depending where you live in the state, one of the state’s medical care organizations (Alliance Health, Partners Health Management, Trillium Health Resources and Vaya Health) will provide and manage your Medicaid benefits.
Once you are covered by Medicaid and under the care of one of the MCOs, you can select your local primary care provider (doctor, medical practice or clinic). Make sure you know which company serves your area – to find your county click on the map at right. If you have not heard from one of the four medical care organizations by July 1, contact them using the following info:
- 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
Improved Services for the 16,000+ People on the Waiting List
A huge game changer for the 16,000+ people in North Carolina on the waiting list for an innovations waiver, Medicaid can now provide community-based home care services, respite care and employment services for those qualifying for Medicaid. This means nursing care, medical equipment, personal care, caregiver and client training can now be paid for and provided to people with disabilities through Medicaid. Known as the 1915(i) option, it also provides for planned short-term or emergency short-term breaks (respite care) and relief for family members and other unpaid caregivers.
It all Begins by Applying for Medicaid
These new additional Medicaid services are very important to people with disabilities and may not be included in other traditional healthcare plans. For anyone with a developmental disability, it all begins by applying for Medicaid which provides comprehensive healthcare coverage for primary care (doctor visits), hospital stays, maternity care, vision and hearing and dental/oral health care and more. It also pays for doctor visits, yearly check-ups, emergency care, mental health and more for little or no cost to you.
To Apply: The best and fastest way people with disabilities to apply for Medicaid is online through PASS or HealthCare.gov or in person at your local Department of Social Services (call 1-888-245-0179). Your local library may offer free, online computer time If you do not have access to one.
Use new Inclusion Connects website to find community-based resources
Inclusion Connects
is a newly launched website to help people with intellectual and developmental disabilities (I/DD) and their families connect with the community-based services they need. It helps find housing resources and support staff who can help people reach out to your local Direct Support Professionals workforce and other community based needs. For feedback or questions, contact NCDHHS via email at dmhiddcontact@dhhs.nc.gov.
Tune in at Noon for Next Sip & Chat – June 19
Please Note: We will be returning to 7 to 8 PM for our Sip & Chat calls in August! Our June Sip & Chat call will be the last one 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 to receive a link to the Zoom meeting.
Register Now – Fragile X Bowl-a-Thon – July 14!
Celebrating National Fragile X Awareness Day, the NC Fragile X Foundation is hosting an Xtraordinary Fragile X Bowl-a-Thon on Sunday, July 14 from 3:00 PM to 5 PM at Rainbow Lanes Family Fun Center, 850 NC-42, Clayton, NC.
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! T-Shirt orders and Advance registration are encouraged. Sign up here.
Public Comment and Input Needed
The Draft 2024-2029 Strategic Plan for the North Carolina Division of Mental Health, Developmental Disabilities, and Substance Use Services (DMH/DD/SUS) is now available for public comment.
The plan shares the department’s mission, vision, guiding principles, priorities, and goals for the next five years and is seeking the public’s feedback before it is finalized. Please read the plan and share your thoughts by July 1, 2024. It can be found here.
19th NFXF International Fragile X Conference in Orlando – July 25 - 28!
Orlando is hosting the 19th NFXF International Fragile X Conference July 25–28, 2024, at the Renaissance Sea World. Attendees can register for an onsite or virtual, web-based conference experience that offers agenda items such as:
- From Preschool to College: Developing College Readiness Skills
- Embracing the Xtraordinary: Inspiration from the Fragile X Community
- Navigating Genetic Counseling and Reproductive Options
- Stay Calm and Regulate
- Employment Strategies and Successes
Visit fragilex.org/get-involved/international-fragile-x-conference/ for more information.
Video Series Provides Unique Perspective on Fragile X in North Carolina
As part of Fragile X Awareness Month, the NC Fragile X Foundation will distribute a six part video series that provides a unique perspective of Fragile X and the foundation from the perspective of parents, advocates, professionals and foundation leaders. The series will be distributed via email and posted on both Facebook and X (formerly Twitter) and includes:
Why Fragile X Awareness Is So Important
Steve Strom, president of North Carolina Fragile X Foundation
What is Fragile X?
Steve Strom, president of North Carolina Fragile X Foundation
Navigating the Healthcare System with Fragile X
Sarah Tamura, Parent and Fragile X Advocate
Launching the NC Fragile X Foundation
Ave Lachiewicz, Medical Director (retired), Duke Fragile X Clinic
Understanding Medicaid Waivers and the Waitlist
Kelly Crosbie, Director, Department of Mental Health Developmental Disabilities and Substance Use Services
Building A Community
Lynne Martin, Parent and Fragile X Advocate
The Importance of Early Intervention
Dave Tillman, Parent and Fragile X Advocate
These videos were recorded last July at a community listening session with families impacted by Fragile X Syndrome that included Mark Benton, Chief Deputy Secretary of Health, DHHS, and Kelly Crosbie, Director, Div. of Mental Health, Development Disabilities and Substance Use Services.
Asheville’s Kate Gregory Joins NCFXF Board
Kate Gregory, M. D., a mother of four adult children including two with Fragile X, has been elected to the board of directors of the North Carolina Fragile X Foundation (NCFXF). In her new role, Dr. Gregory hopes to bring broader statewide representation to the board and to offer a unique perspective from a variety of different directions.
“It seems the medical community focuses most of its attention on our children with Fragile X as we raise them, and then at adulthood they seem to disappear,” Dr. Gregory said. “Over the years, the NCFXF has done a great job of educating pediatric providers about Fragile X Syndrome but we need medical treatment and support across their entire life span (into adulthood). I think it’s time for the Fragile X community to call for more informed care from our adult healthcare providers – the clinics and doctors we depend on. People with Fragile X deserve better informed and qualified treatment providers through adulthood, and I believe that the Board could potentially foster that in some way.”
“With the recent Medicaid expansion, we are improving access to healthcare, but many providers do not feel well equipped to treat adults with Intellectual or Developmental Disabilities (I/DD). I would like to look for ways that the NCFXF could provide education and support to the medical community in an effort to change this.” Dr. Gregory explained. “I see a need to focus on the management and the quality of care for the adult Fragile X population.”
Over the years, Dr. Gregory and her family have attended each of the NFXF International Conferences since the family’s first diagnosis in 2006, participated in Virtual Advocacy Day and been involved in education and support for some of the medical providers and families who have both young and adult children with Fragile X in the greater Asheville area.
Dr. Gregory completed her undergraduate work at Duke University, attended medical school at Vanderbilt University and did her residency training at a Harvard Longwood in Boston. Steve Strom, president of NCFXF, said. “She is a welcome addition to the board.”
Anyone interested in serving on the board of directors or volunteering for the North Carolina Fragile X Foundation is encourage to visit ncfragilex.org/about-us/#foundation-board or email us at info@ncfragilex.org.
Knights of Columbus Continue Faithful Support
The Knights of Columbus and LAMB Foundation Director, John Gouldie, presented a check to the Board of Directors of NCFXF on Saturday, June 8, to continue their faithful support of our Fragile X Foundation that began in 1989.
On May 4th, Dr. Ave Lachiewicz, Board Member, and Steve Strom, NC Fragile X Foundation President had the honor of attending the Knights of Columbus 104th State Convention in Durham and reporting on the foundation’s recent activities.