COMING UP ROSES: CULTIVATING A CONTINUUM OF SERVICES FOR PREVENTION, DIAGNOSIS AND TREATMENT OF FETAL ALCOHOL SPECTRUM DISORDERS IN THE GARDEN STATE Susan Adubato, Ph.D. –

GOVERNOR’S COUNCIL ON THE PREVENTION OF MENTAL RETARDATION AND DEVELOPMENT DISABILITIES Established by Governor Thomas Keane to assess the status of prevention efforts in New Jersey 1983 – First FAS Task Force organized Published seminal report on NJ prevention programs

Legislation enacted to establish permanent Governor’s Council and Office For Prevention Department of Health establishes FAS - Risk Reduction Program

The Governor’s Council on Prevention puts aside funds to be used to support FAS prevention education programs The Governor’s Council sponsors a conference to educate physicians about FAS and possible legal and malpractice implications

1995 – NJ enacts Point of Sale Warning Sign Legislation The ARC of NJ organizes the first two Pregnant Pause events in Monmouth and Ocean Counties. Events are now held in all 21 counties through collaborative sponsorship of community agencies.

The conference, The Truth and Consequences of FAS, was held with Ann Streissguth as the keynote speaker. Following the conference, the Planning Committee and others coalesced to form the NJ FAS Task Force

MISSION OF FAS TASK FORCE To prevent FAS and to promote effective, life-long interventions for all those affected by prenatal exposure to alcohol and their families The FAS Task Force is a standing committee of the Governor’s Council on Prevention of Mental Retardation and Developmental Disabilities

The NJ Task Force submitted its report on the status of prevention, diagnoses and treatment of FAS to Acting Governor Donald DiFrancesco

And the Good News Is… Acting Governor Donald DiFrancesco appropriated $450,000 to initiate FAS Diagnostic Centers

HIGHLIGHTS OF THE FASD TASK FORCE RECOMMENDATIONS NJ NEEDS COMPREHENSIVE FASD PREVENTION, DIAGNOSIS AND SERVICES BUILT ONTO AND INTEGRATED INTO EXISTING SYSTEMS

1. PREVENTION AND OUTREACH All schools in NJ must include specific health curriculum standards for FAS – NJ core curriculum standards now include FASD education All school faculty should receive materials about FAS annually – Presentations given annually at Teachers’ Conference as well as frequent trainings in individual school districts School nurses should receive FAS as part of continuing – All school nurses receive information about annual conference presentation

2. COMMUNITY EDUCATION All DYFS caseworkers and substance abuse resource workers should receive annual FAS training – Working with DYFS to implement program Foster parents should be trained in FAS – Foster Parent Organization and individual foster families participate on Task Force. Service consultation provided. All Municipal Alliance plans should include FASD prevention objectives All DARE officers should receive FASD education Sponsored 30 th anniversary FAS Conference, in partnership with CDC, October, 2004

3. PROFESSIONAL EDUCATION All schools that train physicians, nurses, mental health professionals and other allied health care professionals should include a comprehensive curriculum for education about FAS – NJ Medical School is CDC- funded Regional FAS Training Center FASD should be required as part of continuing education – Part of plans of Regional FAS Training Center

All hospitals should mandate FAS and addiction training as part of the Joint Commission on Accreditation of Health Organizations NJ licensing requirements for social workers, Certified Alcohol & Drug Counselors, etc., should include knowledge about FAS –Perinatal Addictions Certification developed in 2003 with implementation in Summer, 2004

4. RISK REDUCTION Full implementation of perinatal regulations in N.J.A.C. 8:33C, requiring delivery of Risk Reduction Services at 13 Regional Perinatal Centers Ensure all women have access to Risk Reduction Services where prenatal and family planning services are provided – Risk Reduction system transformed to Perinatal Addictions Projects. All Maternal and Child Health Consortia (6) now have at least one Perinatal Addictions Specialist

5. DIAGNOSIS AND TREATMENT SYSTEM Identification, Outreach and Referral Diagnosis Case Management Family Support Psychiatric Services (Referral to existing services.) Continuing Physician & Allied Health Education Website: fasnj.org

6. SURVEILLANCE AND EVALUATION Improve reporting of FASD to NJ Birth Defects Registry – Diagnostic Centers report all cases. NJ now has “real time” reporting Improve data on the incidence of FAS, including demographics, severity, long-term effects, service needs, and costs – NJMS designed and implemented FASD Surveillance System Evaluation must be integral part of FASD Prevention, Treatment and Service Systems

TREATMENT SERVICES (A work in progress) Special Child and Adult Health Services Presumed eligibility for Early Intervention Programs Family Support Groups Access to Special Education Work with DDD, DMH, DAS and Children’s Mental Health Initiative regarding eligibility criteria for services Juvenile & Criminal Justice Systems

OTHER ON-GOING CONCERNS Increase number of hours FASD Diagnostic Centers operate Need a centralized service system Better case management of adolescents and adults Increase research capacity