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.adubatsu@umdnj.edu – 973-972-7717

GOVERNOR’S COUNCIL ON THE PREVENTION OF MENTAL RETARDATION AND

DEVELOPMENT DISABILITIES

• 1983 - Established by Governor Thomas Keane to assess the status of prevention efforts in New Jersey

• 1983 – First FAS Task Force organized

• 1985 - Published seminal report on NJ prevention programs

• 1987 - Legislation enacted to establish permanent Governor’s Council and Office For Prevention

• 1989 - Department of Health establishes FAS - Risk Reduction Program

• 1994 - The Governor’s Council on Prevention puts aside funds to be used to support FAS prevention education programs

• 1995 - 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

• 1997 - 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.

• 1998 - 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

• 2001 - 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…

• 2001 - Acting Governor Donald DiFrancesco appropriated $450,000 to initiate FAS Diagnostic Centers

HIGHLIGHTS OF THEFASD TASK FORCE

RECOMMENDATIONS

NJ NEEDS COMPREHENSIVE FASD PREVENTION, DIAGNOSIS

AND SERVICES BUILT ONTOAND 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 30th 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