Report on State Approaches to FASD

This report has been prepared for the Maryland Department of Health and Mental Hygiene in response to the task specified in the Blank Purchase Order (BPO) award to share how other states are addressing FASD concerns.  This report addresses:

1) State sponsored FASD efforts - that is, those mandated by state legislation, supported and administered by state agencies, or implemented by the state or local courts.  Federal research and discretionary grant programs related on FASD are not included.

2) Efforts that have been enacted or applied.  Numerous State FASD efforts that have been attempted, but failed to be enacted or applied (such as legislation) are not included.

3) Efforts that have been authorized by state legislation but not necessarily appropriated.  In other words, efforts that the state would be required to undertake IF funds are available.

4) All known state efforts to date to address FASD, including approaches that are punitive in nature, have limited value or reach, or may no longer be funded.  They are included as part of the evolving landscape of state efforts.

How other States are Addressing FASD Concerns

State governments have reacted to the problem of FASD through a variety of approaches that fall on the following prevention-identification-intervention continuum illustrated below: Starting with public education and awareness, the elements on the continuum become more intensive and focused toward an indicated target population.  Consequently, the latter approaches tend to be more resource intensive and less likely to be implemented by states.

Some states have approaches that address individual elements of this continuum, but none have instituted a multi-pronged approach that incorporates all areas.  To date, the majority of state efforts are focused prevention.

It is important to recognize the importance and inter-related nature of all elements of this prevention-identification-intervention continuum in developing State approaches as:

1) Women who drink during pregnancy often expose more than one pregnancy to alcohol.  Therefore, the identification of one child with FASD may offer an opportune time to prevent subsequent alcohol exposed pregnancies of the same mother.

2) FASD is often an intergenerational problem. Appropriate interventions with FASD affected persons may prevent the next generation with the disorder.

At present, the gold standard is the State of Alaska, which through the Department of Health and Social Services has created the Alaska Office of FAS.  This Office has supported at four pronged approach -public education media campaign, a state survey, targeted intervention for incarcerated women, and multi-disciplinary diagnostic clinics.   However, no state has devoted the necessary fiscal resources to implement such comprehensive approaches.  (The bulk of the funds for Alaska’s efforts have come through a five year $5.8 Million/year earmark through the Substance Abuse and Mental Health Services Administration which was funded through October, 2004.  The state of Alaska has since appropriated $7 M in FY 05 for all prevention in the State, which includes FASD.)

1.  Public Awareness and Education

General Public Awareness.  The state of Minnesota passed legislation in 2004 which provided $1.19M for multiple approaches including public awareness.  No information is yet available on the planned program.

Mandatory Warning Signs.  Mandatory warnings have been enacted in some states, and require that a warning sign be posted on premises where alcoholic beverages are served or in the health care settings where pregnant women receive treatment.  Warning signs mandated by a state are different from warning labels which have been required by the federal government.  The language of state warning signs varies depending on the jurisdiction, but most emphasize the risks associated with alcohol consumption during pregnancy.

Many variables affect the language of mandatory warning legislation, and each state takes a slightly different approach.  Nineteen states require warning signs posted by retailers who sell alcoholic beverages for on-premise consumption as well as off-premise consumption.  Two states (Georgia and Nevada) require warning signs for retailers who sell alcoholic beverages only for on-premise consumption while one state (North Carolina) requires warning signs for retailers who sell alcoholic beverages only for off-premises consumption.

Of the twenty-two states that have legislation, only one (Delaware), requires warning signs to also be posted by physician and non-physician health care providers serving pregnant women.  Similarly, two states require their signs be posted in a language other than English with race and cultural neutrality.  Two other states require race and cultural neutrality while one state requires their signs to be gender neutral. 

What follows is sample state legislation regarding mandatory warning signs.  The bill, enacted in 1994 is Washington State Code WAC 314-12-195:

Mandatory signs to be posted warning of the possible dangers of consumption of alcohol during pregnancy.  No later than October 5, 1994 all retail liquor licensees shall display signs provided by the board warning of the possible danger of birth defects which may be caused as a result of the consumption of alcohol during pregnancy.  These signs shall be displayed upon the licensed premise in the following manner.

1. 1. If a licensee holds a license providing for on-premises consumption, the sign shall be posted in plain view (in place which is clearly visible) at the main entrance to the liquor licensed portion of the establishment and in the women’s public restrooms closest to the licensed area.
1. Self-service “mini-bars” in hotel guest rooms shall be exempt.
2. Airports, convention centers, sports facilities and other licensed premises where more than one location of such sale, service and consumption is authorized, shall post signs in plain view in a place which is clearly visible to the majority of patrons entering or approaching the liquor licensed portion of the premises.
2. If the licensee holds a license providing for the sale of alcohol for off-premises consumption, the board provided sign shall be posted in plain view at one or more of the following locations:
1. At each permanent display area of shelving and coolers displaying alcohol beverages.
2. At the cash register(s) where alcohol is sold.
3. At the main entrance to the licensed premises.
3. If the licensee is a liquor manufacturer, the notices shall be posted in plain view at the main entrance to areas where alcohol is sold for off-premises consumption.  If a manufacturer’s tasting rooms have separate buildings or separate entrances, the sing shall be posted in plain view at the main entrance to the tasting area.
4. Signs and replacements shall be available from the enforcement division.

Failure to comply with the provisions of this section shall constitute a violation of the rules of the board and administrative sanctions may be levied.

State Proclamations. Six States have formal FASD proclamations recognizing FASD Awareness Day on September 9.  They are: Alaska, Arizona, Washington, Texas, Kansas, and Montana, and North Carolina.  This event became is now recognized at the national as a result of a Senate Resolution (S. Res. 390) introduced by Senator Murkowski in June, 2004.

2.  Professional Training and Education

Education. Only one state (Alaska) has legislation requiring information on FAS be integrated in to secondary schools.  Alaska is the only known state that requires professional education to include information on FAS or FASD.  Alaska’s training efforts are assessed by the State’s FAS Knowledge, Attitudes, Beliefs & Behaviors (KABB) Survey.  The survey was developed and utilized by the Alaska Department of Health & Social Services, Office of FAS throughout the state among nine targeted audiences, primarily professional groups: the general public, family physicians, obstetricians/gynecologists, pediatricians, public health nurses, corrections personnel, educators, substance abuse counselors, and social workers.  A copy of the Survey can be obtained through the Alaska Office of FAS: 877-393-2287 or fas@health.state.ak.us. 

Health Care.  NOFAS has not identified any state which requires training on FASD for health care professionals.

Criminal Justice. NOFAS has not identified any state which requires training on FASD for criminal justice personnel. The only known model for FASD training for police officials was developed and is in use by the Royal Canadian Mounted Police.

3.  General Prevention. 

General prevention measures target a broad audience and involve some type of interactive process, such as a school based curriculum. 

Youth Alcohol Programs.  New Mexico’s bill, SB505 would make an appropriation to contract youth programs that provide information on prevention for use and abuse of alcohol, tobacco, and drugs in certain Navajo communities in New Mexico.  

Requirement for Marriage Licenses.  Two states, Rhode Island and Illinois, require applicants for marriage licenses to read an informational pamphlet of alcohol use during pregnancy to obtain the license.

4.  Targeted Prevention for High-Risk Women

Case Management. In 1996, on the basis of demonstrated positive outcomes, the Washington State Legislature appropriated funds for continuation of the Parent Child Assistance Program (PCAP), a case management program serving women who had positive alcohol or drug toxicology when they gave birth. Since 1991, PCAP has served over 650 women and their families in Washington. The PCAP model has been commended by Drug Strategies, a Washington D.C.-based policy research institute, as one of a few federally funded interventions that are succeeding nationwide. The model has been replicated at a dozen sites in the United States and Canada.

Criminal Prosecution. Some states have legal provisions that prohibit the use of medical tests as evidence in prosecution of a mother who may have harmed a fetus by consuming alcohol during pregnancy.  A prosecution of this nature would be based on a law making it a crime to harm a fetus or child by alcohol consumption, child abuse, or child endangerment. 

No state has legislation prohibiting the prosecution of a woman for harming a fetus as a result of alcohol consumption.  Five states have enacted limits on criminal prosecution that use medical screening tests as evidence of harm to a fetus.  The five states are Kansas, Kentucky, Missouri, Nevada, and Virginia. 

The legislation enacted by Kansas limits prosecution based on medical evidence for the purpose of confidentiality: “Referral and associated documentation provided for in this section shall be confidential and shall not be used in any criminal prosecution.”  Kentucky law allows a physician to screen for alcohol consumption during a medical history.  It also provides the physician with the ability to perform a toxicology screen up to eight hours after delivery to determine if alcohol was consumed.  The law also states “No prenatal screening for alcohol or other substance abuse or positive toxicology finding shall be used as prosecutorial evidence.”

Civil Interventions.  There is tremendous variance amongst states as to the significance of damage caused in utero.  Alaska, Arizona, Florida, Illinois, Indiana, Nevada, North Dakota, Oklahoma, Rhode Island, South Carolina, South Dakota, Texas, Utah, Virginia, and Wisconsin have provisions regarding use of evidence of prenatal alcohol exposure in child welfare proceedings.  For example, Arizona law states “In determining if a child is neglected, consideration shall be given to:

1. The drug or alcohol abuse of the child’s parent, guardian, or custodian. 
2. The use by the mother of a dangerous drug, a narcotic drug or alcohol during pregnancy if the child, at birth or within a year after birth, is demonstrably adversely affected by this use.”

Punitive Civil Approaches. This section deals with civil interventions, both involuntary commitment of a pregnant woman to rehabilitation of treatment services as well as involuntary placement in protective custody.  The latter approach has been adopted by four states: North Dakota, South Dakota, Oklahoma, and Wisconsin.  A judicial civil intervention must be ordered by a court. 

The Wisconsin law allows women to be taken in to protective custody, jail, or placed in a relative’s home during pregnancy.  A woman may be taken in to custody and held for 48 hours.  If authorities wish to detain the woman beyond the 48 hours, the matter is determined by court. 

The follow summary tables are provided by the Alcohol Policy Information System.

WISCONSIN: THREE STAGES OF CUSTODY

Stage 1: Taking Person into Physical Custody

Stage 2:  Holding Person Briefly in Physical Custody

Stage 3: Continued Physical Custody

Substance Abuse Treatment Approaches

Sixteen states (Arizona, Arkansas, California, District of Columbia, Florida, Georgia, Illinois, Kansas, Louisiana, Maryland, Missouri, Oklahoma, Texas, Washington, Wisconsin, and Wyoming) have also enacted legislation that mandates priority access to pregnant women for substance abuse treatment.  Two of the seventeen broaden the legislation to include postpartum women (Maryland and Missouri), while eight states include women with children (District of Columbia, Florida, Illinois, Missouri, Texas, Washington, and Wyoming).

Almost all states allow for priority to be given at both inpatient and outpatient programs though a few states’ legislation did not specify.  Similarly, most states require priority be given by both public and private providers.

Missouri has enacted the most comprehensive priority access legislation granting privilege to pregnant women, postpartum women, and women with children for inpatient and outpatient treatment provided by public and private physicians.  The legislation reads:

PURPOSE: This rule establishes requirements relative to specialized substance abuse programs for women and children.

(1) Eligibility Criteria. The program shall provide treatment, rehabilitation, and other supports solely to women and their children. Services may be offered on a residential or outpatient basis, in accordance with admission and eligibility criteria for those programs and settings specified elsewhere in these rules.
(A) Priority shall be given to women who are pregnant, postpartum, or have children in their physical care and custody. Postpartum shall be defined as up to six (6) months after delivery.
1. The program shall engage in all activities necessary to ensure the actual admission of and services to those women who meet priority criteria.
2. Adolescents who meet priority criteria shall be admitted if, in the staff's clinical judgment, the adolescent can appropriately participate in and benefit from the services and milieu offered.
(B) Programs designated for women and children will ensure that treatment occurs in the context of a family systems model. Each program will provide therapeutic activities designed for the benefit of children. Thus, it is important that children should accompany their mother, unless contraindicated by medical, educational, family, legal or other reasons which are documented in the client's record. 

5.  Screening

Proper screening techniques are essential for effective statewide identification and intervention. Existing diagnostic practices have practical limitations (cost, length of time, waiting lists).  More research must go in to finding practical screening procedures with sufficient specificity and sensitivity to FAS.  NOFAS has found no information on state legislation or activity regarding FAS screening. 

6.  Diagnosis

NOFAS has found no information on state legislation or activity affecting FAS diagnosis.

7.  Surveillance

State Birth Defect Registries.  Currently, more than two thirds of states do not record cases of FAS diagnosed beyond the age of 2, well before the average age of diagnosis in the early school years.  This contributes to official prevalence rates in each state that are far below the national estimates of the CDC. 

While not limited to just FASD, A 2002 report from Trust for America’s Health entitled “Birth Defects Tracking and Prevention: Too Many States Are Not Making the Grade” concluded that while state registries of birth defects are a key to prevention, too many states do not have adequate programs.  The study found that in 2000, more than 600,000 births were not counted by existing registries while 300,000 births occurred in states that have no registries.  “Today, about one million births—as many as 25%—are not covered in birth defects monitoring programs.”  NOFAS has reason to believe this figure is significantly higher for FAS affected births.

The report assigned a letter grade to each state’s birth defect registry based on the ability of the registry to carry out tracking, data use, prevention and research capacity, data sharing, and the number of state resources devoted to the task.  Nine states had no program at all, or received the grade of an F.  Eleven states received a D, ten received a C, fourteen received a B, and eight received an A. What is more, two-thirds of all states with registries do not study the link between the birth defect recorded and environmental exposure information.  The report called upon the states to meet or exceed the minimum registry standards set by the CDC.   

8.  Parent Support and Advocacy

NOFAS has no knowledge of state legislation or activity that provides for parent support and advocacy, though the State of Washington has provided nominal funding to the Fetal Alcohol Syndrome Family Resource Institute (FASFRI) for this purpose through the Department of Alcohol and Substance Abuse.

9.  Services for Persons with FASD

Developmental Disabilities Services.  Getting individuals with FASD the needed services from state and local government agencies is dependent on their ability to establish eligibility under existing legal standards. 

Federal definitions of developmental disabilities are broader than state definitions.  Some states adopt the federal criteria, while most add more detailed (and often restrictive) criteria.  Most individuals with FASD do not meet the eligibility standards for developmental disability due to IQ threshold scores set by state regulations (usually set at under 70). 

Individuals with disabilities often qualify for social security disability benefits.  However, the eligibility standards and benefits of this program vary significantly.  Having a diagnosis of FAS is not an automatic eligibility and there are few judicial opinions on this subject.  

Arizona recently passed HB 2242 that urged the state to bring eligibility criteria more into line with Federal criteria.  Prior to the bill, anyone with an IQ score over 69 did not quality for state services, regardless of their inability to function in daily life.  Federal criteria consider functional abilities and are therefore more realistic and expansive in determining what individuals are in need of services.  A similar effort to expand developmental disability eligibility to persons with FAS with IQs over 69 was introduced in the Washington State legislature in 1995 but failed to come out of committee

Other: Criminal Justice

When a criminal defendant has FASD, the State courts generally have not taken into consideration the disability’s effect on the individuals’ actions or competency to stand trial.  In addition, when the issue of FASD is introduced for consideration in legal proceedings, it is usually for the purpose of supporting termination of parental rights and has rarely been used successfully as a mitigating factor when considering sentencing in criminal proceedings.

10.  Other State level FASD efforts – Policy planning & development

FASD State Coordinators.  Currently, 15 States and one tribe have official FASD state coordinators.  Their roles and responsibilities vary considerably across states.  More than half of the State coordinator positions have been designated in the past two years. Please click here for a list of the FASD state coordinators.

FASD Task Forces. Nine states have FASD task forces or working groups (CA, MN, CT, NJ, WA, SD, MI, IL, & MD). NOFAS has conducted surveys with these groups to gain insight on their framework, activities, accomplishments, and possible barriers to success. Please click here for a list of state FASD task forces.

Task Force sizes range from 8 (Michigan) to 60 (New Jersey) members.  All task forces include consumer representation (people with FASD, birth mothers, etc.) but they are not required in all states. Task Force meetings are open to the public.

Task forces are housed in many different government offices/departments, for example:

MICHIGAN:  State Dept. of Community Health

MINNESOTA: State Dept. of Health

NEW JERSEY: State Dept.of Human Services, OPMRDD (Office for the Prevention of Mental Retardation and Developmental Disabilities)

WASHINGTON: Governor’s Office

SOUTH DAKOTA: State Dept. of Human Services

Some task forces have specific budgets (Minnesota and New Jersey budgets are part of state appropriations bills), whereas others do not (California Task Force financing is based on donations from individual agencies).

All states are interested in a forum for State FASD Task Forces to share info with one another. This type of Task Force Coalition could facilitate communication and idea exchange.

Accomplishments:

New Jersey: The Task Force submitted a report on the status of FAS prevention, diagnosis and treatment services to the Acting Governor in 2001 which resulted in a $450,000 annual appropriation to support the initiation of the FASD Diagnostic Centers.  The Task Force also sponsored the International 30th Anniversary Conference: The Truth & Consequences of Fetal Alcohol Syndrome, in 2003 and will soon publish the conference proceedings. 

Minnesota:  Currently, the Task Force is in the process of completing legislation.  A specific work plan has been submitted to the health department, including specific intervention objectives to enhance the ability of communities, schools and families to help individuals with FASD through proper support.

Barriers:

The most common barriers for the Task Forces to achieve their missions are time commitment (of members) and time restraints of tasks. To accomplish goals, task forces need committed members and reasonable tasks.

III   Statistical reports that would indicate the level of need in Maryland

A groundbreaking statistical report on the level of need in Maryland was produced by the Lewin Group of Fairfax, Virginia.  This report found that Maryland may have up to 702 alcohol impacted births per year, and that each FAS birth can have lifetime health costs up to and exceeding one million dollars.  The Lewin Group concluded that in 2003, FAS most likely cost $102 million dollars to the state of Maryland.  The final conclusion of these estimates was that any intervention that could prevent FAS births would qualify as extremely cost effective for the state of Maryland when compared to the cost burdens of a FAS-affected individual

 IV   Summary of the consultation provided and recommendations

Consultation

On April 4 2005 Kathleen Mitchell, Vice President of NOFAS met with Bonnie Birkel and other state agency representatives to discuss FASD in Maryland and the current legislative mandates. Each of the participants described their roles and how they might integrate FASD into many of their currently funded projects. The group also discussed the deliverables that NOFAS would provide to assist their efforts in addressing FASD.

Ms. Mitchell attended all of the FASD working group meetings and provided input and consultation in developing the vision, mission, goals and objectives of the FASD working group, as well as developing the final report for Maryland.      

Recommendations

NOFAS recommends that the state of Maryland designate an FASD Coordinator to facilitate and monitor progress of activities and serve as an inter-agency FASD liaison. NOFAS recommends that Maryland emulate the best practices from other states in each element of the prevention-identification-intervention continuum and add to them as follows:

Prevention

a) Public Awareness and Education

* Implement the Five-Year FASD Public Awareness Campaign. Maryland should consider contracting NOFAS or another non-profit to facilitate the public awareness campaign in order to facilitate dissemination of materials expeditiously and to receive the benefit of free billboard and transit display and air time available to non-profits. NOFAS recommends that Maryland utilize existing FASD materials developed by NOFAS and the National Institute on Alcohol, Abuse and Alcoholism (NIAAA) for a 2001 Washington, D.C. FASD campaign (RFP: AA 99-07). NOFAS would recommend targeting the campaign in year one to Baltimore City and developing a timeline to expand efforts throughout Maryland in the following years. The demographics of Baltimore and Washington, D.C. are similar, which could save the state of Maryland from having to fund expensive formative research. The available materials can be revised using the existing graphics and text and adding the Maryland contact information and logos. NOFAS would recommend that components of the campaign include billboards, transit ads, dioramas, cinema slides, radio public service announcements (PSA), T.V. PSA’s, brochures, posters, and magnets (to place in restrooms).  All of these materials have been developed and are easy to replicate for Maryland.  

This initiative promotes Maryland’s stated priorities, such as the “Babies Born Healthy” initiative and the “Children Entering School Ready to Learn” initiative.  As a result, the Title V Block Grant performance measures for improving maternal and infant health and preventing death and disability among women and children would be greatly improved.

b) Professional Training and Education

The continued interaction and trust that exists between women and their health care service providers offers a unique opportunity to educate women about alcohol use and pregnancy. Physicians and allied health professionals in the state of Maryland need education on FASD. NOFAS recommends that Maryland:

* Establish FASD Curriculum in universities that offer medical school programs.

* Establish mandatory minimum number of  training hours for professional certification for the following groups: educators, health care providers, social service workers, and criminal justice professionals.

C) General Prevention Programs

* Provide FASD education to Maryland school administrators and disseminate FASD curriculum to elementary, middle, and high schools.

D) Targeted Prevention for High Risk Women

* Disseminate an FASD training packet to every addiction treatment center in Maryland. Contents should include:

1. SAMHSA’s Recovering Hope Video (features mothers who drank during pregnancy; developed to target women with addiction issues). This award winning vide package includes discussion guidelines for counselors and informational brochures for women.  It is available free of charge from the National Clearinghouse on Drug and Alcohol Information at: http://store.health.org/catalog/ProductDetails.aspx?ProductID=16955
2. Circle of Hope Brochures and Newsletters (national mentorship program for women who have used substances while pregnant)
3. Posters, brochures and fact sheets on FASD
4. Power point presentation

* Provide FASD materials to Maryland universities and community colleges to be utilized in health fairs and alcohol and drug awareness efforts.

* Institute referral to case management services for women who give birth in hospitals that have positive drug or alcohol toxicologies. Referral service should include substance abuse treatment/counseling and family planning.

* Require provision of information regarding FASD to persons in substance abuse treatment centers, correctional facilities, and homeless and domestic violence shelters.  (It is important to share this information with men as substance abusing men are often in relationships with women who use/abuse substances).

* Require that all establishments that serve or sell alcohol post visible warning signs.

Identification

* Train staff from high risk settings that serve individuals with substance use histories (addiction treatment, clinics, jails, mental health, WIC, Head Start, etc.) to screen for FASD in clients, and client’s children.  

* Screening children that enter the juvenile justice system should be mandatory.  

* Develop brochure/mailer and send notification via listserves announcing the FASD Diagnostic Center at Kennedy Krieger. Disseminate this information to addiction centers, jails, adolescent programs, special education, mental health, HMO’s, Medicaid, etc.

Surveillance

* Kennedy Krieger should develop and maintain data collection on FASD referrals and outcomes.

* State funded addiction treatment centers should be adding questions on pre-natal alcohol exposure for the clients that they treat and their children on their intake assessments (children who have been exposed should all be assessed for possible FASD). 

Support for Individuals with FASD and their Families

* Organize parent and family support meetings through NOFAS and Kennedy Krieger. 

* Develop referral system to connect birth mothers, families and individuals with FASD to the NOFAS Circle of Hope program.

* Modify eligibility criteria to allow for individuals with FASD with an IQ score over 69.   This is more in line with federal criteria which considers functional abilities.  

Obtain State Funding for Comprehensive FASD Prevention and Services