The Northwest Tribal Fetal Alcohol Spectrum Disorders Project
Mission:
The Indian Health Amendments of 1992 required Indian Health Service (IHS) to develop a program that would reduce the incidence of FAS to less than 2/1,000 births in Indian Country.
Goals:
The Northwest Tribal FASD Project seeks to reduce the level of FASD through the development of effective programs and multidisciplinary collaborative partnerships.
Project Information:
The current project scope includes strategies for identifying and supporting women of childbearing age who are potentially affected by fetal alcohol exposure in utero and increasing community knowledge and developmentally responsive interventions that create prevention for future generations. Project training focuses on prevention and intervention strategies using community, family and individual strengths and resources that can be appropriately designed to meet cognitive and social emotional needs. The development of family focused case coordinated systems continues to be a primary goal of the project, insuring that all activities proceed from a culturally congruent context to truly create circles of collaborative care.
The FASD project is in its fifth year of operation. Community assessments identified broad themes and needs common to most sites.
Twenty out of twenty tribes expressed or reported:
The impact of grief and denial on provider-family relationships as a major inhibitor to successful prevention and intervention strategies.
That families have difficulty accessing useful information and resources regarding FASD.
That health clinics, educational programs, and social services within the communityvary in their knowledge, access and delivery of FASD information.
Difficult or no access to medical identification and diagnosis.
That family and community denial and grief result sometimes from stigmatic approaches or inadequate support.
A generalized resistance to counts, and studies in the absence of effective help on the subject.
The need for more training specific to each service, as well as trainings that involve all providers and families as a consortium.
Nineteen out of twenty tribes reported:
That the transition and change of providers produced little continuity of care or sustainable approach to FASD programming.
Little real collaboration among services.
Eighteen out of twenty tribes reported:
Felt there was a need for all programs to tailor their parenting and substance abuse programs to meet the learning styles of alcohol-affected populations.
Seventeen out of twenty tribes reported:
Expressed a need for intervention strategies that recognize the multigenerational aspects of FASD and its impact on parents and grandparents.
Fifteen out of twenty tribes reported:
Infrequent integration of elders and community members in prevention and intervention strategies.
Little knowledge of how to use educational mandates to identify and map intervention strategies.
Four out of twenty tribes reported:
Initiated discussion about the occurrence of multiple births of children affected by alcohol exposure in utero by the same mother.
All four identified these mothers as possibly being alcohol affected themselves.
Tribal sites completed the formation of individual tribal task force teams, produced long-term goals from the context of FASD and received trainings that provided effective educational strategies to children in Early Intervention through post-secondary settings. They also received training in strategies for cognitive retailoring of services in VOC rehab, prenatal counseling and chemical dependency curricula for adolescents and adult populations who may have fetal alcohol. Sites defined methodologies and sustainable activities for their FASD teams and have identified FASD resources available to their communities.
Pilot sites expressed a need for more justice system participation. The potential for the positive involvement for juvenile probation was successfully noted by two of the tribes, suggesting the importance of their participation. They also expressed the need for more team representation from their Tribal Councils.
The development of diagnostic teams continues with consultant observation and support of diagnostic follow up for diagnosed individuals and their families. The continued importance of tribal member and elder participation on site based FASD teams has been consistently noted and is emerging.
Potential Task Force Team Members
Who should participate and be represented?
Behavioral Health
Mental Health Providers
Drug and Alcohol Treatment Counselors
Parent Educators
Educators
Healthy Start
Early Intervention
Early Childhood
Head Start
Special Education
Elementary through High School
Post Secondary/College
Public Health Providers
C.H.R.s
M.P.H.
W.I.C. staff
Medical staff: doctors and nurses
Indian Child Welfare
Vocational and Career Development Counselors
Corrections providers
Juvenile Services
Adult Corrections
Probation Officers
Families affected by fetal alcohol
Biologic
Adoptive
Foster
Middle and high school students
Community leaders/tribal council members
Elders
Spiritual advisers and religious leaders (relevant to community context)
Tribal and economic development staff
Tribal and community recreation development staff
Housing Providers
Diagnostic team members
Sites defined methodologies and sustainable activities for their FASD teams and have identified FASD resources available to their communities.
The project integrated with relevant FASD resources:
Northwest Portland Area Indian Health Board
Indian Health Service
University of Washington FAS/FAE Legal Issues Resource Center
National Indian Justice Center
Idaho Native American Families Together (project for advocacy for children and parent in special education)
Fetal Alcohol and Drug Unit, University of Washington
Fetal Alcohol Syndrome Diagnostic and Prevention Network, University of Washington
Oregon State Department of Mental Health and Chemical Dependency
Governor’s Office of Indian Affairs
Funding:
IHS
