“Tell me your story”: Outcomes after an FASD Diagnosis Evaluation of the Anchorage Fetal Alcohol Spectrum Disorder (FASD) Diagnostic Team Project Kristen Mitchell-Box, DrPH

Objectives Evaluate the diagnostic team process to help design and implement more effective services, and; Pilot the Photovoice methodology as an alternative means for individuals living with FASD to communicate their experiences and advocate for themselves and their system of care.

Strategies 1.Surveys administered to parents and caregivers. 2.Surveys administered to the Alaska Office of Children’s Services (OCS) and Office of Public Advocacy (OPA) staff. 3.Photovoice project with individuals diagnosed with FASD. 4.Key informant interviews with parents and caregivers.

Participants 12 potential participants identified / contacted by a parent navigator 7 interviewed

Methods Contacted 3 times Participants chose place and time to meet Audio recorded with participant permission minutes in duration $20 gift card to Fred Meyer

RESULTS

Positive Outcomes Developing coping skills and strategies Finding strengths Offering hope and increasing confidence Providing support for family members Opening doors

Developing coping skills and strategies and finding strengths “[We] found that her audio intake is not, it does not work very well so, therefore, in school, she needs to be able to either have her recorder at school so that she can re- listen to what the teacher says or that the teacher can print off the lesson so that she can go back and read that at her own time and space. Because when she’s in the cluttered room, her brain clutters so it helped her with her school work.”

Offering hope and increasing confidence “Assets [Anchorage FASD Diagnostic Team] gave hope … gave us a real hope that there could be an outlook that she could finish high school and she could go to a vocational school.… It helped my daughter become more confident. Instead of thinking that there wasn’t anything she could do, that there were a lot of things that she could do.”

Providing support for family members “It opened my husband and I’s eyes … she’s not being a bad child we’ve just got to go with a different way to get her to understand this. So I think as far as anxiety and stress as parenting has went way down because before we would go, ‘Is she just doing this to make us angry?’ We can look at this and go, ok, let’s see where her brain is and thinking let’s go about this in a different way and see if that works.”

Opening doors “[We] were able to get a lot of different types of trainings, go to a lot of conferences, and that type of thing so that [we] could really learn from a lot of different people what strategies would really be beneficial for [our daughter].”

Challenges and Barriers Challenges with the justice system. Challenges with the education system. Inadequate services or follow-up.

Challenges with the justice system After an altercation with a police officer, one mother described: “They finally get her, cuff her, bring her back home. They say well, we should take her to a juvenile center, because she cannot run from an officer. Like, she has FASD, so I showed them the notebook, all the releases, therapies she’s in.… I’m like, I know she has a fight/flight issue. This guy looks at me like I’m crazy.”

Challenges with the education system Another parent wanted more training for educators because: “A lot of the time when you have a kid that has FAS, the teacher’s like, ‘Man, this kid has a lot of behavioral problems’.… I think it helps the teachers realize too that that’s not so much behavioral, that there’s some holes in the brain and that’s the just reality. And there are different ways to work around them.”

Inadequate services or follow- up One grandmother described: “[Respite care] has been completely not doable … I need somebody that is trained, somebody that knows what FASD is … Respite hours pay 10 dollars an hour. If I am going to get even somebody that is coming out of their program, I’m looking at 17 dollars and hour. If I’m looking at somebody that it’s actually experienced, I’m looking at 27 to 30 dollars an hour.”

RECOMMENDATIONS

Anchorage FASD Diagnostic Team: 1.Develop an intervention and/or action plan for all clients. 2.Verify resources/services are available and accessible. 3.Offer follow-up services (i.e. case management).

Healthcare and Service Provider: 1.Seek more education about a diagnosis and its effect on treatment plans. 2.Communicate with the diagnostic teams to develop coordinated system of care. 3.Develop services specifically for individuals with FASD and for their families.

Education and Justice System: 1.Improve/update training opportunities. 2.Introduce screening mechanisms into systems. 3.Consider offering education to all school district children.

Policy Makers: 1.Reinstate/streamline waiver system and ensure agencies involved are trained and have the capacity to offer appropriate services. 2.Re-deploy the Knowledge, Attitudes, Beliefs, and Behaviors (KABB) Survey to professionals in the state of Alaska. 3.Fund case management and follow- up care.

Advocacy Groups: 1.Continue to secure funding to provide services like training, education, supportive networks, respite care, etc. 2.Use alternative means of data collection and interpretation, like Photovoice and process analysis, from those affected by FASD about how best to structure their system of care.

Thank you!  The Anchorage Fetal Alcohol Spectrum Disorder Diagnostic Team: o Marilyn Pierce-Bulger, Medical Liaison o Dylan Conduzzi, Coordinator o Barbara Chambers, Parent Navigator  Master of Social Work students Diana Molina and Lindsay Henkelman  CBHRS student assistant Elizabeth Williams  Project participants who gave so generously of their time. All community members involved in supporting individuals affected by Fetal Alcohol Spectrum Disorder.

QUESTIONS?