The National Organization on Fetal Alcohol Syndrome: Program and Legislative Update

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The National Organization on Fetal Alcohol
SyndromeProgram and Legislative Update
Annie Acosta, M.S.W. FASD Field Trainers
Meeting December 1, 2005
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NOFAS Mission

• The National Organization on Fetal Alcohol
  Syndrome (NOFAS) is the leading voice and
  resource of the Fetal Alcohol Spectrum Disorders
  (FASD) community. NOFAS, the only international
  FASD non-profit organization, is committed to
  prevention, advocacy and support.
• NOFAS effectively increases public awareness and
  mobilizes grassroots action in diverse
  communities and represents the interests of
  persons with FASD and their caregivers as the
  liaison to researchers and policymakers. By
  ensuring that FASD is broadly recognized as a
  developmental disability, NOFAS strives to reduce
  the stigma and improve the quality of life for
  affected individuals and families.

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NOFAS Expenditures
Advocacy
Advocacy
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What Does NOFAS Provide?

• Public Awareness
• Media Outreach
• PSAs
• Awareness Campaigns
• Youth Education

• Professional Education
• Curricula
• Provider training

• Constituent Services
• Affiliate Network
• Birth Mom Network
• Support Groups
• Consultation Referral

• Advocacy
• Government Affairs
• Family and consumer advocacy

http//www.nofas.org
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2005 NOFAS Programs

• CDC Projects
• - Clearinghouse
• K 12 Curriculum
• Cherokee Nation Community Intervention
• Public Awareness and Advocacy Guide
• Reach Project (Weinberg Foundation)
• HRSA Community Health Clinics (earmark)
• SAMHSA Projects
• Women in Recovery Summit
• Certified Addictions Counselors (CAC) Curriculum
• Circle of Hope
• Affiliates

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NOFAS CLEARNINGHOUSE
Newsletter, Fact sheets
Website w/ searchable databases
Library
Public Service Announcements
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NOFAS K-12 CURRICULA

• Kindergarden Grade 2
• A story book that helps classmates identify their
  own strengths and weaknesses while embracing
  things that make them special

• Grades 3 - 5
• A lesson plan that provides general information
  on FAS and accompanying health nutrition
  worksheets

• Grades 5 - 8
• A lesson plan that provides general information
  on FAS with a focus on specific brain areas
  affected with accompanying brain model.

• Grades 9 - 12
• A lesson plan that provides general information
  on FAS with accompanying Law Order videotape to
  engage student discussion of legal and ethical
  issues.

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CHEROKEE NATION PROJECT

• Accredited training on FASD for Allied Health
  care providers
• Community Art Project contest
• Community Battle of the Bands event
• Dissemination of prevention materials throughout
  the 14 county community of Tahlequah, Oklahoma.

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PUBLIC AWARENESS GUIDE
Step-by-step guide to reach the general public,
various systems of care, and the media through
the application of cost-effective FASD public
awareness efforts.
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REACH PROJECT

• Reducing FASD through Education, Advocacy,
  Community Coalitions and Health Information
  Dissemination (REACH) for youth ages 11-15 years
  
• Mississippi Choctaw Navajo Nation
• N.A. Rehabilitation Services Standing
  Rock Sioux
• Youth leaders plan alcohol and pregnancy
  awareness campaigns designed to encourage their
  peers to make healthy and informed choices about
  alcohol use, pregnancy and lifestyle. 
• Peer leaders deliver classroom presentations,
  conduct town hall meetings, and develop posters,
  brochures and other print media items  

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The Circle of Hope

• A program to increase understanding and support
  and strengthen recovery for women who drank
  during their pregnancy (ies), and their families
  
• Bi-monthly conference calls
• Bi-yearly retreat
• COH newsletter
• Password protected membership database
• Track requests for speaker and disseminate to
  COH speakers
• Track national and regional conferences to have
  displays or provide materials
• Track legislation and seek opportunities to
  provide testimony.
• Seek opportunities to provide input to agencies
  that serve high risk women

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The Curriculum for Certified Addiction Counselors
(CACs)

• To educate addiction professionals through a
  nationally accredited FASD training credential
  on
• the science of FASD
• historical perspective and identification of FASD
  
• the behaviors and characteristics through the
  lifespan
• intervention techniques and counseling for women
  who are high risk for having children, or who may
  have or have had children with FASD.

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Women in Recovery Summits a 2 day FASD
educational events

• women in treatment and their counselors
• addiction professionals
• state agencies
• state legislators and other key stakeholders. 
• 2003 Baltimore, MD
• 2004 Phoenix, AZ
• 2005 Raleigh, NC
• Replication How to Manual developed by NOFAS.
  Under review by the Center for Excellence.

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NOFAS Affiliate Program

• To embolden NOFAS advocacy efforts at the
  federal and state level to better coordinate a
  national response.
• To share knowledge and information between
  state and grassroots advocates
• To provide technical assistance for grassroots
  advocacy.
• To support NOFAS media outreach and public
  education efforts.

NOFAS Affiliates at the 1st Affiliate Summit
CALFAS Board Members
Stefany Saccente, President, NOFAS- CT
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NOFAS Affiliates

• NOFAS AK - Deb Evensen http//www.fasalaska.com/
• CALFAS - Eva Carner, http//www.calfas.org/
• NOFAS CT - Cindy Farrow
• NOFAS OR - Diane Malbin, http//www.fascets.org/
• MOFAS - Joyce Holl, http//www.mofas.org/
• NOFAS SD - Judy Struck, http//www.usd.edu/cd/nofa
  ssd/
• NOFAS WA - Julie Gelo, http//www.nofaswa.org/
• International Affiliate
• NOFAS UK Susan Fleicher, http//www.nofas-uk.org
  /

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Benefits of NOFAS Affiliation

• A national structure to associate your state or
  local constituency with an advocacy presence at
  the federal level
• A network of other advocates and specialists in
  the field of FASD.
• Access to prevention and treatment materials at
  cost or free of charge.
• Access to NOFAS staff for technical assistance
  and affiliate website.
• Access to latest presentations for various
  audiences.
• Media/community outreach and advocacy support,
  tailored communications and advocacy materials,
  such as OpEds, press releases, talking points,
  legal guides.
• Funding opportunities through development
  assistance

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Health Resources and Services Administration

• Provides funding to 972 health centers across the
  United States and U.S. territories that serve
  more than 6 million people who are predominantly
  members of
• minority (64),
• low-income (91)
• Medicaid (36)
• and uninsured (40) groups

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I Risky Drinking Education for Collaboratives

• Objectives 1 Increase prevention of FASD in
  Community Health Centers (CHCs)
• 1.1 Increase provider knowledge of FASD
• Make presentations at regional national
  meetings of collaborative participants
• Website linkages between collaborative site
  NOFAS
• Develop webcast for Clinical Directors Network
• Disseminate prevention materials to CHCs through
  collaborative structure

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II Create Risk Drinking Collaborative

• Objectives 1 Increase prevention of FASD in
  Community Health Centers (CHCs)
• 1.1 Disseminate FASD materials to CHC clients
• 1.2 Screen pre-conceptual and pregnant women for
  alcohol use in CHCs
• 1.3 Provide brief interventions for pregnant,
  alcohol using women in CHCs
• 1.4 Provide addiction treatment to pregnant,
  alcohol abusing women or refer for treatment
• 1.5 Offer/Provide contraception to drinking
  women of childbearing age.
• Objective 2 Increase the identification of
  persons with FASD in CHCs
• 2.1 Screen suspected cases of FASD in CHCs
• 2.2 Diagnose FASD in CHCs or refer positive
  screens for FASD to local diagnostic facilities
• Objective 3 Increase treatment for persons with
  FASD in CHCs
• 3.1 Provide appropriate treatment and support
  (on-site or by referral) to diagnosed clients and
  their caregivers

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Goals of HRSA collaboratives

• 1) To reduce the gap between actual desired
  delivery rates for preventive health services
• 2) To delay or decrease the complications of
  chronic illness by excelling in
• Patient self management
• Clinical decision support
• Positive delivery system re-design
• Clinical information systems
• Strong partnerships with local and community
  state organizations

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Collaborative Partners
Collaborative Partners
Depression
SAMHSA
Risk Drinking
NOFAS
Cancer
NCI
HRSA HDC
Service
Practice
Science
Science
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Health Disparities Collaborative Process
12 months
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Examples of change packet issues forRisky
Drinking in Primary Care settings
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Examples of change packet issues for Risk
Drinking in Primary Care settings
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NOFAS ADVOCACY RESOURCES PROGRAMS

• - FASD Caucus
• - Hill Day
• - Advocacy Guide
• - Capwiz
• Policy Statements Action Alerts

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FASD House Caucus

• Founded in June 2004 by Representatives Jim
  Ramstad (R-MN) and Frank Pallone, Jr. (D-NJ).
• Sends out Dear Colleague Letters to other
  members of the House in support of appropriations
  and authorizing language.
• Co-chairs to introduce and sponsor FASD
  legislation.
• Participated in numerous NOFAS events including
  Hill Day, FASD Day Commemoration etc
• Hosted a Congressional Briefing on Prevention of
  FASD.
• 35 members and growing!

http//www.house.gov/pallone/fasd_caucus/
National Organization on Fetal Alcohol Syndrome,
November 2005
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Hill Day 2005

• Purpose to educate members of Congress and
  their staff about FASD, and request their
  support for prevention, identification and
  intervention programs.
• Preparation Full day advocacy training held May
  17.
• Event Scheduled and impromptu meetings in
  Senate and House of Representatives offices held
  on May 18.
• Participants Over 50 Delegates
• Representation 13 states
• Number of Meetings 45 different Senate and
  House Offices.

From Left to Right Chelsi Stevens (Health LA for
Rep. Randy Kuhl (NY-R)), Tim, Tyler, Cindy and
Natali Whitcomb.
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Hill Day Talking Points

• 1) Join the FASD Caucus
• 2) Reintroduce S.2741 The Advancing FASD
  Research, Treatment and Support Act.
• 3) Support the continuation of funding for NOFAS
  Community Health Centers program in the
  Labor-HHS-Education Appropriations Bill.
• 4) Hold a hearing on FASD highlighting them as
  significant mental health/substance issues OR a
  disparity issue.
• 5) Cosponsor S.408/H.R.864, The STOP Underage
  Drinking Act.
• 6) Require professions regulated by federal
  agencies and their subsidiary State systems to
  include FASD-related items on licensing/credential
  ing exams.

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ADVOCACY GUIDE

• Step-by-step guide to reach policy makers
  through the application of cost-effective FASD
  advocacy efforts.

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NOFAS ADVOCACY TOOL CapWiz
Example Search for State Legislative Committees
on NOFAS CAPWIZ
Step One Go to the NOFAS website at
www.nofas.org
Step Two Click on the Advocacy Tab.
Step Three Scroll down to the Action Alert
section. Locate State Officials and select your
state. Click the GO button.
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Step Four The results for your state will
appear. Find (state) Officials and Agencies.
Click on the View button.
Step Five Click on the link to (your state)
Legislative Directory.
Step Six Find the Committees drop down menu and
select -Health and Human Services. Click on the
Go button next to the menu.
Step Seven The committee members will appear.
Select the desired member and click on the Get
Member Info.
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Step Eight The contact information will appear.
Click on the Send Message button.
Step Nine A message window will appear. Enter
your subject and message. Fill in the appropriate
fields and click on the Send Message button at
the bottom of the page.
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Policy Papers and Action Alerts
http//www.nofas.org/advocate/statements.aspx
NOFAS Urges Rep. Strickland to Have the House
Support the Senate-passed Version of the Mentally
Ill Offender Crime Reduction and Treatment Act
(S. 1194) Senate Bill to Combat Fetal Alcohol
Spectrum Disorders Draws Praise Pregnant Women
Who Drink Alcohol Need Treatment, Not
Prison NOFAS' Stance on Underage Drinking
Legislation NOFAS Calls on Surgeon General to
Re-issue Alcohol Advisory during Pregnancy
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NOFAS Advocacy Goals for the 109th Congress

• Inclusion of FASD language in the following
  legislation
• Start Healthy, Stay Healthy Act of 2005 (S.740)
• Prevent Prematurity and Improve Child Health Act
  of 2005 (S.710)
• Health Professionals Substance Abuse Act (S.538)
  (HR 1789)
• Prematurity Research Expansion and Education for
  Mothers who deliver Infants Early Act (PREEMIE
  Act) (S.707) (HR 2861)
• Head Start Improvements for School Readiness
  (S.1107)
• Passage of the following legislation
• Advancing FASD Research, Prevention, and Services
  Act (S.1722)
• Healthcare Equality and Accountability Act
  Family Care Act of 2005 (S.1580) (HR 3561)
• Indian Health Care Improvement Act Amendments of
  2005 (S.1057)
• Head Start Improvements for School Readiness
  (S.1107)

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Current FASD Legislation

• S. 538 Health Professionals Substance Abuse
  Education Act (Introduced in Senate)
• Introduced by Senator Joseph Biden. Jr (D-DE).
  Co-sponsors None
• Emphasizes the importance of establishing Centers
  for Excellence to initiate, promote, and
  implement training, research, and clinical
  activities.
• HR. 1789 Companion Legislation in the House.
  Introduced by Congressman Patrick Kennedy (D-RI)
  Co-sponsors Democrats 8 Republican 1
• S.408/ STOP Underage Drinking Act
• Funding for FASD research is included in the
  research provisions
• Introduced by Sen. Mike DeWine (R-OH),
  Cosponsors 18, Democrats 10, Republicans 7,
  Independent 1
• Companion Legislation H.R.864 Introduced Rep.
  Roybal-Allard, Lucille (CA-34) Co-sponsors 68

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Current FASD Legislation

• S. 1580 Healthcare Equality and Accountability
  Act
• SEC. 434 Carries the exact same FASD provisions
  listed under S. 1722
• Senate Co-sponsors - 18 Democrats and 0
  Republicans
• HR 3561 Companion Legislation introduced in the
  House
• S. 1057 Indian Health Care Improvement Act
  Amendments of 2005
• Introduced by Sen. John McCain (R-AZ), 6
  Democratic
• Co-sponsors.
• SEC. 706. Indian Women Treatment Programs
  includes services for high risk women.
• Sec. 711. Includes FASD Funding

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S.1722 Advancing FASD Research, Prevention, and
Services Act

• Senators Lisa Murkowski (R-AK) and Tim Johnson
  (D-SD) introduced S.1722 Advancing FASD
  Research, Prevention, and Services Act in
  September 2005.
• Original co-sponsors include Senators Richard
  Durbin (D IL), Patty Murray (D-WA), Norm Coleman
  (R-MN) and Chris Dodd (D-CT).
• Companion legislation introduced in the House of
  Representatives by Congressmen Frank Pallone
  (D-NJ) and Jim Ramstad (R-MN) in November.

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S.1722 Advancing FASD Research, Prevention, and
Services Act

• FASD Research
• Surveillance, Identification, and Prevention
  Activities
• Building State FASD Systems
• Strategic Planning of FASD Activities
• Promoting Community Partnerships
• Development of Best Practices
• Transitional Services
• Community Health Center Initiative

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FASD Programs
1999
2000
2001
2002
2003
2004
2005
2006
1999 Appropriations Rider to the Health
Professions Act of 1998 27 M/yr - 15m SAMHSA
10m CDC 2m T.F.
Alaska FAS/E A Comprehensive integrated Approach
5.8 M/yr
The 4 State Consortium (SD,ND, MN, MT) 2.4 M/yr
Community Initiated Prevention Interventions (4
FAS grants) 1.2 M/yr
Childrens Health Act of 2000
FASD Materials Development Center for Excellence
(Westat) 1.2 M/yr
FASD Center for Excellence (Northrop Grumman)
3.2 M/yr
Subcontracts to the field 8 M/yr
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S. 1722 Advancing FASD Research, Prevention, and
Services ACT
2007
2008
2009
2010
2006
Building FASD State Systems (SAMHSA)
Provisions which could be used to continue and/or
modify the work of the Center for Excellence
Promoting Community Partnerships

Transitional Services
Research on FAS and Related Disorders (NIH)
Surveillance, Identification, Prev. Activities
(CDC)
Development of Best Practices (Task Force)
Community Health Center Initiative (HRSA)
No agency specified