Northwest Portland Area Indian Health Board: Indian Leadership for Indian Health

Northwest Tribal Fetal Alcohol Spectrum Disorder

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Purpose:

The Northwest Tribal FASD Project seeks to reduce the incidence of FASD and to assist tribal communities to improve the quality of life of those living with FASD.

Project Information:

This project is one of collaboration with NPAIHB member tribes in providing prevention education to tribal communities regarding the effects of fetal exposure to alcohol, as well as to gain skills in diagnosing FASD, and to develop support and protection for those community members already affected.
The deep impact of FASD within tribal communities has served to inform the design and delivery of the Northwest Tribal FASD project . It aims to develop pre and post diagnostic protocols that demonstrate that diagnosis is for identifying solutions that include community specific services.  All approaches and activities proceed in a culturally congruent context to create circles of collaborative care.  The project provides technical assistance to facilitate appropriate cognitive tailoring of behavioral health strategies.

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 community vary 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 aor 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 FASD Task Force
Since this survey, several Tribal sites have completed the formation of tribal specific coalition or task force teams, have produced long-term goals from the context of FASD and have received trainings that provided effective educational strategies to children in early intervention through post-secondary settings. They also received training in strategies for cognitive re-tailoring of services in vocational rehabilitation, prenatal counseling and chemical dependency curricula for adolescents and adult populations who may have had fetal alcohol exposure.  Tribal site collaborators defined methodologies and sustainable activities for their FASD coalition or task force teams and have identified FASD resources available to their communities.
Tribal sites collaborators expressed a need for more justice system participation. The positive involvement of juvenile probation staff was noted as being successful by two tribes, suggesting the importance of such participation.  Also expressed was the need for more team representation from Tribal Councils.
The development of diagnostic teams continues with consultant observation and support of follow up for diagnosed individuals and their families.  The continued importance of tribal member and elder participation on FASD task forces or coalitions has been consistently noted.

The Project accesses relevant FASD resources, including but not limited to:
Northwest Portland Area Indian Health Board
Indian Health Service
University of Washington Fetal Alcohol and Drug Unit
University of Washington Fetal Alcohol Syndrome Diagnostic and Prevention Network
University of Washington FASD Legal Issues Resource Center
National Indian Health Board
Idaho Native American Families Together
Oregon State Department of Mental Health and Chemical Dependency
Washington State Governor’s Office on Indian Affairs