FASD North Dakota, an affiliate of FASD United, has big news. FASD ND is ran by Carl, Malette, and Kelsey Young- and while they have a small team, they get it done! The state victories S.B. 2335 and S.B. 2276 were enacted into North Dakotan law this May. Executive Director Carl Young agreed to an interview regarding this important legislation, his life, as well as what’s next for their organization.

The matter of FASDs and disability services are close to his heart, as Carl Young was adopted and is on disability himself for systemic lupus. To advocate for these topics of care as well as his family, he sits on a number of boards and commissions. Malette Young aids her husband as a Special Education teacher and parent aid, and “helps keep families together,” as well as, providing referrals for families. Carl’s daughter Kelsey runs the group’s social media and communications. When forming FASD North Dakota in 2018, “we did it with the goal in mind that families wouldn’t have to struggle the way we struggled with getting our son’s (diagnosed with an FASD) services,” He mentions the importance of not feeling alone.

As someone who has been versatile his whole life, Young also served in the army during the first Gulf War teaching officers how to drive semis, and then spent a summer at Westpoint providing transportation to the cadettes. Following, his unit was sent to Germany where he provided vehicular services there. Young has also been a college professor, webmaster for a regional corporation, and done data programming.

Among these things, Carl is a lobbyist, spending time in the North Dakota state capitol to provide information and updates on FASD to his legislators. Excitedly, FASD North Dakota just received their first grant to flesh out awareness materials, as well as, also putting together a proposal for their state department of HHS to provide training to child welfare workers beginning in September. “This is not what I was going to college for…” Young studied AI and VR in university, wanting to teach social skills to youth with Autism, but was told that the topics he wanted to pursue would not go anywhere. Now, he is able to put his skills to good use with awareness initiatives and helping aid families and individuals with disabilities.

It was 2006 when Doctor Larry Byrd proposed FASD related legislation that did not make its way out of committee in North Dakota. “So, what we’ve accomplished is huge, by we I mean the collective of advocates that came together and helped,” Carl states. “I’ve been in the field for twenty years, and I still don’t call myself an expert…I’m learning something new about FASD every day.” From January to May 2023- Carl was fully engrossed in FASD North Dakota’s legislation (as well as prior to it), working intense hours and collaborating with those involved. “We’re already gearing up for next session,” he says, the team is working on grants, new bills, and collecting stories of living experience. As well as, gearing up for a virtual, state Run FASD event and PSAs for social media, “the biggest thing we’re looking to do is get the word out.”

The group has committed over 700 hours to advocacy. “I attended committee hearings whenever a bill referenced FASD or substance-exposed newborns. I made myself constantly available to the legislators.” He even took hours to sit in the capitol’s lunch room and speak to anyone who was willing to listen, along with having “a multitude of people who came in and testified in court.” With the dedicated, advisory help of his wife, and plenty of volunteers, Carl was able to make an impact in session and secure ND’s FASD victories. Their upcoming plan is to have “community conversations,” which target communities where legislators live to promote understanding and communication with what families are going through. This statewide advocacy will also be to find families of neurodivergent youth that are not privy to resources available to them; in order to, assist them with speaking to their own representatives: “It takes a village, or a community” he claims, “these are truly community issues, everybody is touched in some way by FASD.”

Young is especially passionate about reaching North Dakota’s Indigenous nations, “The rate for FASD in Native American communities is 1 in 17…My dad married into a tribal community, and just because I’m familiar with the culture of that tribal community doesn’t mean that I’m familiar with all of the tribal communities.” It is a mission on his heart to help educate and guide those who may not be aware of FASDs and their treatments. Additionally, this passion applies to those with FASDs in the criminal justice system, which he has witnessed closely. “You’re supposed to live life with moderation,” Young jokes, “but when you’re passionate about something, you sometimes forget what moderation is.” This dedication, although stressful, is what has provided North Dakota with its first FASD-focused legislation.

“When you go to an IEP meeting, there is no reason for you to be nervous, you are the expert on your child and you need to be the loudest person in the room,” Young says. He is proud of FASD ND’s success, although humbly adds, “success looks different for everybody.” Finishing his interview, Carl Young states that “life is good, it’s a matter of deciding that you’re grateful for being able to breathe in and out everyday.” His main hope is to continue making a difference in the lives of others, and has he ever! The North Dakota advocates and families touched by this first-of-its-kind legislation will feel the impact of the enacted bills. “Some people count money as a means of wealth, my wife and I count the relationships we cultivate.”

Thank you to the time and talents of FASD North Dakota, and all they have accomplished for their state.

Want to get in contact with Carl Young and his team? Send an email to carl@fasdnd.com or call 701-214-3152

Want to see how ND legislative process has gone? Click here.