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News From NCFASD Informed

Educate. Support. Empower.

‍"Our lives begin to end the day we become silent about the things that really matter." -- Martin Luther King Jr.

‍‍FASD advocates and board members attended the NCCDD Town Hall meeting on Intellectual Disabilities in Charlotte on May 2, 2024 to ask for support and funding for initiatives that would increase diagnostic capabilties, access to the Innovations Waiver and establish a state-level FASD Committee. Photo (L-R): Dr. Yasmin Senturias, Susan Barner, Sheila Farman, Hannah Fulton Murray and Amy Dickey.

I/DD Legislative Caucus Listening Session

‍May 14^th

12:00 noon to 2:00pm

16 West Jones Street, Raleigh, NC

Auditorium of the 3rd floor of the Legislative Building

An Intellectual and Developmental Disabilities Legislative Caucus Listening Session will be held on May 14th from 12: noon to 2:00 pm. Speaker slots are being filled but North Carolina individuals with intellectual and developmental disabilities and family members can attend. Attendees should try to schedule a visit with Legislators before and after the event. You can find your Legislators on the General Assembly Website by entering your address and clicking NC Senator and NC House. You can reach out to the Legislative Assistant to request a meeting with your Legislators on that day by clicking on the Legislative Assistant's name.

General Assembly Website

Advocating for our FASD community

‍On May 2nd, advocates and board members from NCFASD Informed attended the Town Hall meeting on Intellectual Disabilities held by the North Carolina Council on Developmental Disabilities. NCFASD Informed advocates from across the state attended the event both in-person and virtually. It was a great show of unity from our community!

Senator Jim Burgin, Representative Terry Brown (91st District) and Representative Carla Cunningham (106th District) along with other community members participated in the Town Hall and listened to our requests for support.

We were able to spread awareness that:

1 in 20 have an FASD.

Only 10% of those with an FASD are diagnosed.

Not being able to receive a diagnosis prevents our loved ones from getting appropriate treatment and therapies.

This leads to the development of secondary behaviors that have a real financial and social cost to our state.

Conservatively, FASD costs North Carolina $6.5 billion a year in healthcare, special education, residential care, productivity losses and corrections costs. Despite this, federal funding for FASD has declined 56% since the 1990s.

The NCFASD Informed Community asked our representatives for:

Expanded diagnostic capabilities in our state. Thanks to the partnership with Dr. Yasmin Senturias, we have a plan to train practitioners on diagnosing FASD. We are asking for funding to implement this training program.

Easier access/approval for the Innovations Waiver for our loved ones by making FASD a RECOGNIZED disability.

The creation of a state-level "FASD Committee" that will enable our state to receive funding from the federal FASD Respect Act when it is passed this year.