Alaska Indian Health Care System

FAS/ FAE/ ARND Screening,

Diagnosis and Treatment and

Perinatal Alcohol Exposure Prevention Activities

At Alaska Native Medical Center

And

Other relevant Indian Health Care System Activities around perinatal
alcohol exposure

Alaska Native Medical Center ANMC /Southcentral Foundation Primary Care
Center lead the considerable efforts being put into FAS prevention,
education, diagnosis and intervention. The majority of these activities
are funded through SAMHSA funds, overseen by the Alaska State Office of
the FAS. These projects occur across the State of Alaska and reach many
Native communities. One component of this statewide effort is a network
of **FAS Community multidisciplinary diagnostic teams**, of which ANMC
is one. There are approximately 13 community teams, many of which are in
primarily Native communities. Communities with diagnostic teams that
serve their regions include Anchorage, Nome, Kotzebue, Bethel, Kodiak,
Dillingham, Fairbanks, Tok, Copper Center, Kenai Peninsula, Sitka,
Ketchikan, Mat-Su Valley, and Juneau.

As a clinical program focused on the multidisciplinary diagnostic
evaluation of Alaska Native children prenataly exposed to alcohol that
are between the ages of 3 to 18 years, priority is given to
beneficiaries who reside within our service area\--that includes
Anchorage and approximately 55 rural villages. Second priority is given
to accepting referrals from around the State, if appropriate.

The **multidisciplinary evaluation is based on a system developed by the
University of Washington\'s FAS Diagnostic and Prevention Network.** The
diagnostic team is comprised of 4 pediatricians, 2 psychologists, 1
parent navigator/advocate, 1 speech/language pathologist, 1 physical
therapist, a social worker, and one Mental Health FAS Case Manager. Upon
a team evaluation, considerable energy is spent in developing
intervention/care plan recommendations for the child and family. Limited
case management follow-up is provided directly, with the majority of
support (through consultation) given to other health care providers as
they provide the on-going care and follow-up. Parent/caregiver support
groups for the families on the waitlist, and with those already
diagnosed is provided.

Reduction or prevention of the well known secondary disabilities that
frequently arise with this population is being addressed to improve they
and their families overall quality of life.

In addition to the primary clinical emphasis, training and education of
community, parents/caregivers, and professionals (e.g., physicians,
mental health, educators, child advocates etc) is conducted. A **3rd
Annual Community Workshop on FAS**, in 2003 focused upon legal issues.
Robin Ladue Ph.D. gave the keynote. National FAS Awareness day
prevention/education activities are held in the service community.

Recently, the team was selected by State of Alaska to develop, over the
next two years, an **in-state diagnostic training program based upon the
University of Washington\'s FAS team model and diagnostic system**.

In addition Southcentral Foundation who is part of the Native Health
consortium overseeing the Alaska Native Medical Center has a number of
collaborative programs that are directed at FAS prevention through
clinical activities. There is an entry level **Pregnancy Support Staff
person(s) in women\'s health clinic and prenatal clinic** who provide
one on one on-the-spot prenatal alcohol/substance abuse risk assessments
and referrals. Addressing tobacco addiction is a similar manner is
underway.

The **Dena A Coy program - a residential treatment for substance abusing
pregnant women supported by the State of Alaska and available to all
Alaska citizens is well utilized by the ANMC serviced population**.
Referals are made from the clincs and post partum care includes PHN
followup, well baby checks and referral to the FAS clinic as warranted.
ANMC staff are seeing second generation FAS issues and undiagnosed FAE
that require as much attention to parenting of children and care to
themselves. FAE is often more severely affected and because of their
functional level are found in more high risk situations. They also have
an infant advocacy program track in which they are following up on the
children born to woman in the program to provide some advocacy/case
management.

Further high risk women can be referred for 45 day treatment who are not
pregnant or do not wish to fulfill on the criteria for admission and
retention that the Dena A Coy treatment team has set up. Women can also
be referred from Labor and Delivery if a positive urine drug screen is
obtained.

This over view was provided with the extensive assistance of the
following people.

Contacts:

Michael Baldwin

FAS Clinic Coordinator

Southcentral Foundation

907-729-4250

<mrbaldwin@anmc.org>

Neil Murphy, M.D. OBGYN, FACOG

Chief Clinical Consultant OB/GYN

ANMC

Indian Health Service

Margaret Baldwin, R.N., CNM

Mch Coordinator Alaska Area

ANMC

Activities from HQ that support or indirectly contribute to Alaska FAS
activities are numerous. They are categorized by divisions within the
office of public health and include:

The **Behavioral Health Division** of the Office of Clinical and
Preventive Services (OCPS), OPH, IHS carries the **portfolio for Fetal
Alcohol Syndrome**.

-   This program has been unfunded since the mid 1990's. All program
    dollars as such rest with the tribes. Several of the programs as
    discussed below are funded through other agencies. Activities have
    supported development and printing of FAS educational tools, parent
    and family support publications and culturally sensitive stories
    about the experience of FAS.

-   National Behavioral Health Meeting occurring week of 7/14/2003 in
    D.C. has a FAS topic presented by IHS Chief Medical Officer, Capt.
    Kathy Masis of the Billings Area.

-   The IHS does have pass through dollars that go directly to the
    University of Washington to pay for several IHS participants and
    preferably teams to attend a course held twice a year. Staff in the
    Behavioral Health Division monitor this project.

-   GPRA element on screening women of childbearing age on alcohol and
    substance abuse the monitoring and revision of this indicator is
    underway.

The Maternal and Child Health Coordinator, Division of Clinical
Community Services, OCPS, OPH, IHS

-   IHS representative on the ICCFAS lead by Faye Calhoun of NIAAA.
    Agency and academic membership to this group is broad with sub
    committees that include juvenile justice, education and services.
    This group reviews current research in diagnosis, care, out reach
    and public education in a variety of forums. Much attention has been
    paid to the "town hall forums" that have taken place over the past
    year and one half.

-   Attends and tracks the activities of the National Task Force on FAS
    as chaired by Mr. Ed Riley and Dr. Jose Cordero Director of the
    CDC's National Center for Birth Defects and Developmental Delays
    (NCBDDD). Visits with the NCBDDD took place in March 03 along with
    the CDC FAS team,

-   National Organization on Fetal Alcohol Syndrome (N.O.F.A.S), and
    attendance at town hall meetings have occurred. Ann Streisguth of
    the University of Washington and Kenneth Jones a primary author of
    the first paper on FAS over 30 years ago were on the panel that
    heard testimony this past June here in the district. Tribes
    testified in the Rapid City town hall in April 03. Arizona IHS staff
    will be part of a townhall panel in Tucson this autumn. Alaska has
    not had a town hall meeting.

-   Collaboration with First Nation and Inuit Health is underway and is
    expected to lead to joint conferences in MCH research and an
    International Pediatric Meeting with topics to include perinatal
    alcohol exposure, FAS and attendant comorbidites and complications.
    Sponsorship is underway with the American Academy of Pediatrics
    taking the lead.

-   The Committee on Native American Child Health (CONACH) produces site
    visits to Areas that have retained their HPDP dollars and most
    recently visited Billings Area where two out of the four CME
    requests were for FAS.

-   The ACOG Committee on Native American Women's Health visited ANMC in
    May of 03, with tandem trips to Bethel, Barrow, and Sitka. The full
    report to the Director is being compiled. ANMC provide comprehensive
    surgical Obstetric care with 25% of the prenatal patients being high
    risk. Over 90% of the deliveries are done by certified nurse
    midwives. Consultation with the Community Health Aides is through
    the certified nurse midwives -- see the contact below.

-   The Director's Youth Initiative 03 discretionary grants funding has
    several applicants requesting funding for FAS activities, including
    training of staff for multidisciplinary teams, optometric equipment
    to better address the field needs of children with FAS eye related
    defects.

-   Monthly conference calls with the 12 areas and 1 urban MCH
    coordinator include primary mental health, family violence, child
    maltreatment, oral health, breastfeeding and most recently FAS.
    Discussion included the Alaska program, prenatal risk assessment,
    perinatal care for women at the Dena Acoy Home,

Other Field activities not necessarily associated with specific HQ
programs that would support Alaska and FAS activities in general
include: The Parent-Child Assistance Program, originally known as the
Seattle Birth to 3 Project, a 5 year federally funded (CSAP) research
demonstration project in 1991 designed as a model of intensive,
long-term paraprofessional advocacy with high-risk mothers who abuse
alcohol or drugs, now funded by the Washington State Legislature because
of the demonstrated positive outcomes has implications for AI/AN
programs. This has been replicated in the US and Canada.

Paraprofessional advocate case managers work with a caseload of 15
families each, for 3 years beginning at enrollment during pregnancy or
in the postpartum period. Advocates connect mothers with existing
community services, coordinate services among this multidisciplinary
network, assist mothers in following through with provider
recommendations (including treatment and staying in recovery), and
assure that children are in safe home environments and receiving
appropriate health care. A unique feature of the model is that women are
not asked to leave the program because of relapse or setbacks.

IHS has Child Health and MCH and Women's health Web sites that direct to
links for key agencies, foundations, training below:

<http://www.niaaa.nih.gov/extramural/FASfinal.htm#STAFF> example of
membership, minutes and ICCFAS activities

<http://www.cdc.gov/ncbddd/fas/fasprev.htm> CDC Fas activities

<http://www.cdc.gov/ncbddd/fas/default.htm> perinatal surveillance

<http://www.samhsa.gov/centers/csap/csap.html> SAMHSA/Center for
Substance Abuse Prevention (CSAP): Fetal Alcohol Spectrum Disorder
Center for Excellence, Partnership to Prevent Fetal Alcohol Syndrome,
Fetal Alcohol Spectrum Disorder Grant Program

<http://www.hc-sc.gc.ca/fnihb/cp/fas_fae/index.htm> First Nations and
Inuit health FAS page. Excellent tribal account of programs directed to
FAS over the age spectrum is contained in their publication.

<http://www.nofas.org/>   organization, definitions on FAS, and updated
news about FAS, 30 page parent booklet with comprehensive discussion
very readable.

<http://thearc.org/misc/faslist.html#identifying> This website provides
materials on FAS, resource manuals, educating families, and prevention
campaign material. Key leader in adult and transition issues for people
living with FAS.

<http://w3.ouhsc.edu/fas/>  Has pictures and information about FAS,
along with other websites to visit and tips for mothers that are
expecting as well as for expecting fathers

<http://depts.washington.edu/fasdpn/index.html>  this site has a booklet
on FAS diagnosis prevention, and screening dealing with the 4 digit
diagnosis code. section on training and a website to get further
information on training. Over view of what you would be learning and the
materials you would be getting for training.  Also talks about measuring
the facial phenotypes

<http://ohioline.osu.edu/hyg-fact/5000/5534.html> It gives you a brief
over view about how alcohol affects your baby.  Then it tells the
audience the proper diet for a pregnant woman

<http://www.come-over.to/FAS/>  Community resource center with featured
articles about understanding behavior, and training for children with
FAS, a nice variety.  There is even a substance abuse quiz, parent help
on this website, games and personal situations are also there.  question
answer sections.