# Presentation: 796337

**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**

**Notes:**
Thank you for inviting me to participate in this exciting meeting of the States.  I am excited to be able to share with you what we’re trying to accomplish in NJ to prevent, diagnose, and treat FASD.

## 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

**Notes:**
In order to understand where we are today in NJ and where we hope to go, I need to give you the historical context.  

The Governor’s Council on Prevention was originally created by Governor Thomas Kean in 1983.  The purpose of the Council was to assess the status of programs to prevent mental retardation and to make recommendations as to how New Jersey could improve, expand, or initiate prevention programs.

In 1985, the Council published its report, Programs to Prevent the Causes of Mental Retardation.  Included in the report were the recommendations that there be a permanent Governor’s Council on Prevention and an administrative partner, the Office for Prevention.

Thanks to The Arc of New Jersey and other collaborators, Public Law 1987, Chapter 5 was enacted and thus the Council and the Office were established.  The Office receives two annual appropriations that total  almost $900,000.

- 1987 - Legislation enacted to establish permanent Governor’s Council and Office For Prevention
- 1989 - Department of Health establishes FAS - Risk Reduction Program

**Notes:**
FASD is the most common PREVENTABLE cause of mental retardation and other developmental disabilities.  For this reason, the Governor’s Council on Prevention has consistently made prevention of FASD one of its top priorities since its inception.

Building on the Governor’s Council Report, the Department of Health (and now Senior Services) obtained funds in 1989 to establish its FASD Prevention Program, commonly known as the Risk Reduction Program.  The purposes of the program are:
1)   to provide a coordinated, statewide network of regionalized services to prevent the adverse effects of alcohol and substance abuse on the developing fetus and 2)  to promote healthy pregnancy outcomes.  

Regionalized MCH system.

Hospitals and other agencies provide direct drug and alcohol intervention and addiction treatment referrals to pregnant women.  A recent mandate requires hospitals to have a Risk Reduction Specialist on staff.  This individuals provides drug and alcohol assessments and screening, education, counseling and referrals to treatment programs for pregnant women.

- 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

**Notes:**
The Office for Prevention had provided funds to community agencies to educate about FASD since its inception in 1988 as part of its general Small Grant Prevention Education Program.  In 1994, following the advice and guidance of the Governor’s Council on Prevention, the Office set aside funds to be used specifically for FASD prevention education.
Community agencies can apply for public education funds, up to $50,000 for three years, to design and implement educational programs.
Working with many partners that included the DHSS and The Arc of NJ, the Governor’s Council sponsored a conference for physicians that specifically addressed legal and malpractice issues associated with not advising against drinking during pregnancy.

- 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.

**Notes:**
NJ became one of the first states to enact the P-o-S law. Not sure how effective, but value lies in educating bartenders and folks who sell alcohol.

In 1997, the Community Educator for the Mercer County Council of Alcohol and Drug Abuse approached the Office for Prevention, the DOH, and others to serve on an FAS Conference Planning Committee.  This same year, building on a program that had originated in California and been implemented in New Mexico, The Arc of New Jersey worked with the Arcs of Monmouth and Ocean Counties to sponsor Pregnant Pause events.  Pregnant Pause is a fun filled educational program to teach women not to consume alcohol while pregnant.  Pregnant Pauses are now held in every county in New Jersey.

- 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

**Notes:**
In May, 1998, over 350 persons from throughout the state convened at the conference, The Truth and Consequences of FAS.  Ann Streissguth from the University of Washington presented her findings regarding the long-term secondary effects of prenatal exposure.  A panel of parents documented what it is like to live on a day-to-day basis with someone with FAS.  The conference also provided the opportunity to educate Commissioners and Deputy Commissioners of state agencies on the importance for prevention and the need for diagnostic and treatment services.

Later that same day, the Planning Committee was joined by others 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**

**Notes:**
Members include:  Birth mom and foster/adoptive families

DHS – OPMRDD, Medicaid, DMH, DDD, DAS, Children’s Mental Health Initiative, and DYFS

DHSS – Family Community Health – MCH, Consortia and Perinatal Addictions, Birth Defects Registry, Diagnostic Centers, 

UMDNJ- Genetics, pediatrics, OB/GYN, SOM

Community Agencies – The Arc – the Coalition for Prevention of DD, MOD, UCP 

- 2001 - The NJ Task Force submitted its report on the status of prevention, diagnoses and treatment of FAS to Acting Governor Donald DiFrancesco

**Notes:**
The FAS Task Force met diligently for 2 1/2 years, assessing the current status of programs in NJ.  It also conducted a study of all medical and nursing schools in the state to determine the degree to which FAS education was included in the training curricula.  The study documented that students receive little or no training in FASD.

In 1991, the Task Force published its report and submitted it to the Acting Governor.

## And the Good News Is...

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

**Notes:**
In just the year since the release of its report, the Task Force and the Governor’s Council have been pleased by actions taken by the State to implement some of the recommendations.  First, the Acting Governor responded to the report and to advocates from The Arc of New Jersey by including $450,000 to support Diagnostic Centers in his Kids Needs Initiative.  Second, having met with representatives from The Arc of Ocean County and the Director of The Arc of New Jersey, Assemblyman Blee from Atlantic County submitted legislation for this purpose as well.

Now have six centers located throughout the state.  In the past year:  1450 children screened with 150 FAS 20 ARND; IN north – African American; South –Latino, migrant workers; Central – international adoptions
70 outreach programs reaching est. 1500 persons – includes DYFS, Adoption Agencies, Detention Centers, EIP, Eastern Psychological Assn; 
Mailings to MDs and Health Center, SW
Referrals – Psych, OT, PT, speech and language, audiology, LD, 

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

**Notes:**
The strongest recommendation given by the Task Force was that there is no comprehensive, integrated system to prevent, diagnose, treat and provide services to persons with FAS and their families.

Recommendations were presented in seven specific areas.

## 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**_

**Notes:**
Achievements

2003 -NJ has mandated Family Live Education which is part of the  core curriculum standards in Physical Education and Health.  FAS education is now part of FLE and every NJ student in 8th, 10th and 12th grade will be educated.

Since 1998, workshops on FAS have been presented to teachers and school nurses at their annual conference.  Diagnostic Centers do frequent lectures to school districts.

## 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**_

**Notes:**
ACHIEVEMENTS

Commish’s Work Group on Substance Abuse as part of federal review.  Training Subcommittee is designing curriculum that will certify all case workers and supervisors as well as continuing accreditation program.

Members of FASD TF sit on DYFS Child Health Advisory Board for Foster Children.

Information sent annually to all Municipal Alliances, but haven’t made a whole lot of head way there yet.  Working to insure that prevention of FAS included in all municipal alliance plans.

## 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**

**Notes:**
ACHIEVEMENTS

Only one medical school with three quasi-independent campuses. Only one campus currently includes FAS education – Chair of the FASD TF – genetics course for 1st year medical students.  As part of completing report to Governor, surveyed all campuses and Schools of Nursing.

Past year NJ Medical School in Newark was selected by CDC to be one of four regional training centers on FAS.  With the other 3 sites, they’ve completed a survey of MDs regarding knowledge and attitudes towards drinking during pregnancy and are in the final stages of establishing a curriculum.

- 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**_

**Notes:**
ACHIEVEMENTS

Implemented 2003...looking to make the course recognized by Certification Boards in other states.  Also investigating making the course available through the Internet.

## 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**_

**Notes:**
As mentioned earlier, the DoH initiated its Risk Reduction System in 1989.  In 2001, this system was moved out of the hospitals and placed in the MCH Regional Consortia. 

All Perinatal Addictions Specialists required to be Certified Alcohol and Drug Counselors and all have now been trained in FASD.   Perinatal Specialists work with Addictions and Treatment Centers to identify women and to educate staff.

## 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**

**Notes:**
All FASD Diagnostic Centers report cases to DoH on quarterly basis.

## 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**

**Notes:**
-NJ already provides case management services through its Special Child and Adult Health Services System.  However, we recognize that more intensive services are generally needed for families who have a member with FASD.

-Presumed eligibility for EI means that any child who is suspected of having been prenatally exposed to alcohol can get EI services if they show some developmental delays.  However, EI services are limited and, despite outreach to physicians and other health care providers, many children with FAS who may be eligible are not referred to a case management unit for evaluation and referral.

-Children with FAS may be eligible for SPED, but not necessarily due to the diagnosis but to the learning problems.  If the LD and/or behavioral problems are not severe enough, parents have a difficult time getting children SPED – other health impairments.

-Similarly, children and adults may be eligible for services from DD, MH, etc., but the criteria don’t now include FASD.

-Psychiatrists trained in Washington to diagnose.  Are working to put psychiatric team together.
-Need to hold training programs for judges and other juvenile and criminal justice personnel. The Arc of NJ’s DDOP and ACNJ

## 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**

## Slide 20

**Notes:**
Here’s Matt once again at about age 6.  He lived with me for about three years during adolescence and, during that time, elicited all of Streissguth’s well-documented the secondary conditions.  
He is severely learning disabled, had interrupted schooling by mental health problems, he was well-known to the police and criminal justice systems for a while, was sexually precocious, and was involved with drugs and alcohol.  Matt had a lot of friends, but was never able to keep them for very long.  

However, sometime in his late teens, something began to fire up in his central nervous system.  His reading became more fluent and he comprehended more of what he read.  Now 23, Matt lives in an apartment with his pet ferret and mouse, he made through almost one year of college, does works fulltime at a low paying job and so needs financial assistance, and much love from his family.  Other than qualifying for Section 8 housing due to his low income, which is very limited in NJ, Matt does not qualify for any services or benefits.  
Midrash --
I want to invite all of you to learn more about Matt at our 30th Anniversary Conference, The Truth and Consequences of FAS, in Atlantic City on October 27 and 28.