A Continuum of Initial FASD Intervention Services

Community awareness; adoptive and foster parent training; pre-service and continuing education training for professionals in important service systems

Community awareness

Community awareness is one response to a public health problem that can be effective in stimulating further action. Awareness is often only the first step; but as members of important service systems and the public increasingly understand there is a problem—and learns that something can be done about it—the momentum for building the continuum of care will grow.

Community awareness of FASD has grown dramatically over the past 30 years. There are now many Web sites, books, newsletters and articles offering accurate and useful information about FASD. (At the same time, note there is still a lot of misinformation on the Web about FASD and FASD intervention!) In the U.S., for example, public health literature (and training) is available from governmental bodies such as the Centers for Disease Control and Prevention (CDC), the National Institute on Alcohol Abuse and Alcoholism (NIAAA), and the Substance Abuse and Mental Health Services Administration (SAMHSA). Literature and training are also available from national organizations such as the ARC, March of Dimes or NOFAS; academic institutions; and state-level organizations of parents advocating for FASD. Public health-oriented literature and training are also available from organizations focusing on developmental disabilities, health conditions, or even specifically on FASD. Other countries also offer public health literature. There are also listservs connecting families and professionals together, such as FASLink.

In the U.S., the SAMHSA FASD Center for Excellence has sponsored organized efforts to build state systems to improve policies, existing service delivery systems and surveillance to create sustainable evidence-based responses to FASD.

Specialized training

But community awareness is only the first step. Of great importance is specialized training for adoptive and foster parents and for family advocates. Equally important is targeted pre-service education and continuing education training for paraprofessionals and professionals in a wide range of disciplines: health care, mental health, education, juvenile justice/correctional, legal, early intervention, adoption and child welfare, chemical dependency, vocational training and more. Of particular importance is training for key personnel who can prevent FASD (or identify it very early), such as those who provide prenatal care, neonatal care, chemical dependency treatment, and family planning services. Also essential is training for professions who may not yet be targeted for training, or who may not have an easily accessed, systematic method for monitoring training. This includes the wide range of daycare and early intervention providers, who have an excellent opportunity for early identification and even FASD prevention.

Curricula have been developed for parents and for many disciplines (especially physicians and teachers). A variety of FASD curricula for parents and professionals can be found through an Internet search. Curricula exist for juvenile justice and chemical dependency personnel. There are now four regional training centers established and funded by CDC to develop, implement and evaluate training curricula for medical and allied health care professionals, including evidence-based guidelines for FASD. There are also four organizations developing curricula for parents, school staff, Native American communities and other adult learners, funded by the CDC.

But it is still essential for these curricula to actually be adopted (and mandated for use)—or appropriate specialized curricula to be developed— by training institutions, certification groups and professional organizations.

What is needed to increase awareness and training about FASD and FASD intervention?

The Iceberg newsletter is one useful way to do this!! And here are a few more ideas:

• Continue operation of regional FASD training centers.

• Encourage training on new developments in FASD in conferences for professional organizations, or through the efforts of those who are building state systems to respond to FASD.

• Mount campaigns to encourage formal adoption of existing curricula in professional training, such as in medical schools, early intervention systems, and in training for juvenile justice workers.

Here are a few Web sites of interest:

• SAMHSA FASD Center for Excellence. The center has created an amazingly comprehensive list of “promising practices” and informational resources that families and professionals can access.

• NOFAS. This is a national FASD advocacy organization, offering informational resources and links with state affiliates.

• FASLink. This a listserv that connects individuals interested in FASD; it is based in Canada but serves an international audience.

Screening systems that find and identify children at risk
Passive screening systems, such as birth defect registries, can find some infants with problems. But these passive systems are less useful for prenatal alcohol damage. FASD comprise a spectrum of neurodevelopmental disabilities that are revealed not only in physical findings (facial features and growth impairment)— but also in complex learning and behavior problems, and difficulty in adaptive function (Astley, 2004; Riley & McGee, 2005; Streissguth, 1997). These problems result from dysfunction of the brain and central nervous system that becomes increasingly obvious as children grow older. Screening systems for FASD are likely most effective when they use a more active approach, and when they can screen children across a wider age range.

As FASD diagnostic clinics develop, communities build up their own outreach and identification systems. In a sense, these are still passive screening systems, since screening for FASD takes place on a case-by-case basis. Families learn about the clinics and seek services. Professionals become aware of the clinics through trainings or word of mouth, and refer for diagnosis. This kind of diagnostic clinic-oriented screening system can be most effective, widespread and active with greater community awareness and more extensive professional education.

Screening systems for identification of children impacted by prenatal alcohol exposure that are truly active have been developed and can potentially be incorporated into standard, ongoing care—and will likely be effective. Maternal self-report is still the best source of evidence of risk from prenatal alcohol exposure, so asking women in prenatal and delivery settings in a manner protected from serious consequences is potentially very useful for screening (Ondersma, 2006). There is also considerable research on screening through biomarkers such as meconium or other toxicology assays (e.g., Littner & Bearer, in press), although these aren’t yet fully realized. There are even suggestions that screening can be carried out in very early infancy, using cranial ultrasounds (Bookstein et al., 2005). Universal screening is the ideal, but targeted screening in groups at high risk for FASD can also be very helpful. A facial photographic screening system using digitized photographs, successfully used in Washington state in the foster care system, is an active screening system for FAS among a group of children at very high risk for prenatal substance exposure, including alcohol (Astley, 2002). Active screening for FASD using various methods has also been successfully carried out in elementary schools, on a small scale in the U.S. and more recently on a somewhat larger scale in Europe and South Africa (Clarren et al., 2001; May et al., 2000; May et al., 2006).

What is needed to advance screening of FASD? Of course, building community awareness and professional training is essential to more effective screening, referral, and identification. But for building useful FASD screening systems, here are a few ideas:

• Create more FASD diagnostic clinics, which are likely to “naturally” stimulate outreach, screening and identification because patients referred to clinics often obtain desirable services.

• Use available active screening systems, such as photographic screening, especially among groups of children and adolescents at high risk.

• Focus on screening of “high-priority” groups. For example, young children are an important group to screen because of the potential positive impact treatment might have early in life. Especially important are young children highly likely to be prenatally substance-exposed (such as young children of women in chemical dependency treatment, or those in foster care, or international adoptees). Another important group to screen are youth in the juvenile justice system, who then might receive more appropriate sentencing and rehabilitation.

• Explore new ways to carry out active screening.

Screening systems that find women at risk for drinking during pregnancy, then provide appropriate treatment,

There are some programs that serve women, such as chemical dependency treatment programs, maternal-child health agencies (such as WIC), or child welfare systems, that have been mobilized to screen and identify women at risk and provide brief intervention for FASD prevention. Much more remains to be done in this mobilization effort. Brief intervention for FASD prevention has been found to be quite effective, at least for some segments of the drinking population (e.g., Chang et al., 2005). But FASD prevention is not the focus of this article. Of interest here is that these screening systems can not only lead to prevention, but also potentially identify children with FASD who need diagnosis and intervention.

There are also programs that identify and provide long-term services to high-risk women with serious chemical dependency problems, including drinking, who are at risk for having (or already have) children born with FASD. These women need intensive support and mentoring, and their children need intensive services. One such program is the Parent-Child Assistance Program that now has multiple locations in the U.S. and Canada (Grant et al., 2005). Other programs have offered comprehensive services for women and their children, including chemical dependency treatment and family support services (e.g., Nair et al., 2003; Schuler et al., 2003). Such programs have received significant research and public health effort over the past decade, and have so far shown mixed findings. Interestingly, there are new ideas for modifying and improving these services for families with information from the fields of infant mental health and child maltreatment (e.g., Ondersma, 2006).

Why are screening systems for women at risk, and their subsequent treatment programs, of interest to FASD intervention? In part, because these programs offer important chances to identify parents who may have FASD— and vital opportunities for very early identification (and treatment) of children born alcohol-exposed. In fact, FASD has been called a “transgenerational” problem (Streissguth & O’Malley, 2000), because it can occur across several generations in one family. Screening systems for women who drink during pregnancy are even one way to find instances in which there are problems across the generations from mother to child.

What is needed to advance FASD intervention in programs that find and serve women at risk? Here are a few ideas:

• After screening for high-risk drinking, screen further for FASD among women clients—and for both FASD and significant prenatal alcohol exposure among the children of clients.

• Use specialized treatments, or modifications of existing treatments, for women and children found to have FASD.

Diagnostic clinics that offer outreach, identification, referrals and recommendations

There are a growing number of FASD diagnostic clinics in the U.S., Canada and around the world. Diagnostic clinics using a multidisciplinary model and team approach have been recommended as “best practice” by the CDC (National Center on Birth Defects and Developmental Disabilities, 2004). Of course, not all diagnoses are made in multidisciplinary clinics, but sometimes are given by sole health care practitioners, or are made within a multiaxial mental health assessment (typically as a medical condition). It has been noted that simply giving an FASD diagnosis may be a powerful form of intervention (Carmichael Olson et al., in press*). Certainly, early diagnosis of FASD (before age 6) was found to be a “protective factor” that reduced the odds of many secondary disabilities in lifestyle and daily function in a natural history study of a large group of individuals with FASD (Streissguth et al., 2004).

There are several diagnostic systems in use to identify FAS and the full range of alcohol-related disabilities. There is continuing controversy over diagnostic systems, but over time consensus is being built. Guidelines for diagnosing the full FAS have been published in the U.S. (NCBDD, 2004), and a system covering the wider FASD has been published in Canada (Chudley et al., 2005). One diagnostic system used in the Washington State FAS Diagnostic & Prevention Network (FAS DPN), and in which other clinics have been trained, is the 4-Digit Diagnostic Code (Astley, 2004). Other diagnostic systems are available. Research continues to hone FASD diagnosis, and to establish the clinical reliability, validity and utility of various diagnostic systems. New methods of diagnosis are under investigation though not yet fully realized, such as 3-D modeling of facial features (Fang et al., 2006).

No matter what diagnostic system is being used, FASD diagnostic clinics should ideally have systems of outreach and identification that are sufficient to bring in as many individuals affected by prenatal alcohol exposure as the clinics can handle. But these outreach systems should also ideally document how much FASD diagnosis is needed, so that if necessary the number of clinics can be expanded, and clinic services made more widely available. Ideally also, these diagnostic clinics can offer systematic and comprehensive referrals and recommendations.

What is needed to move FASD intervention forward within FASD diagnostic clinics? Here are some ideas:

• Create more FASD diagnostic clinics, and use these as training sites for pre-service and professional education.

• Systematically document the wide range of recommendations given by experienced multidisciplinary FASD diagnostic teams.

• Continue research that carefully examines different FASD diagnostic systems— to make improvements and to find the systems that best identify who is actually affected by prenatal alcohol exposure.

Efficient links that connect affected individuals— found during screening or diagnosed in clinics—to appropriate services

Linkage as an organized part of the FASD intervention continuum is essential, yet harder to discuss. When screening or diagnosis of FASD occurs, subsequent linkage with appropriate community services often occurs rather informally and unsystematically. Making the linkage process more systematic and effective is clearly a part of the FASD continuum of care that needs careful and thoughtful development.
Simply providing referrals and recommendations, and linking families with resources, can be very useful (and effective) for some families. But there are families, with greater or longer-lasting needs or who find themselves in a crisis situation, who require ongoing parent support and education. Ongoing help can be obtained through parent groups, perhaps offered by child guidance centers or mental health facilities, or through more informal parent gatherings, perhaps offered through parent support/advocacy organizations. Parent support and education, and specialized case management and/ or behavioral consultation, can also be obtained through individualized, tailored treatment to families. This article contains links to these services.

After an FASD diagnosis occurs, some FASD diagnostic clinics offer specialized case management or follow-up, such that provided by the Minnesota-based Fetal Alcohol Diagnostic Program, or through clinics and other state programs based in Alaska, and other states. Family advocates in diagnostic clinics, or free-standing FASD parent support groups or advocacy organizations, may also help families link with services in many states, such as in Michigan, New Jersey, Ohio, Washington and others. In Canada, there are specialized follow-up services offered for families with a child diagnosed with FASD, such as one in the province of Ontario (Serrett, personal communication, June, 2006). Also in Canada, “key worker” programs are being developed that may offer just these kind of linkage services, in addition to offering more intensive, ongoing case management services.

What is needed to advance FASD intervention through more efficient linkages? Ideas:

• Create Web-based resources so that families can search for linkages and resources that they need in an efficient manner.

• Pair FASD diagnostic clinics with parent support or advocacy organizations, such as affiliates of NOFAS or state-level resources, so that natural supports can assist families in linking with community services.

• Carefully train clinic-based family advocates or professionals designated to follow-up (such as social workers or “key workers”) to provide linkage services.

A Continuum of FASD Intervention Services

Educational treatments

One growing area of FASD intervention involves useful educational strategies and teaching curricula, including computer software.

Parents and school staff have long been interested in ideas for effectively educating children with FASD, and both training and research have gathered momentum. Curricula for educators and videos related to school have been produced. Experts have written chapters and books with information for teachers. More recently, educational information has been made available on Web sites. One good example of a Web site useful for educators is the “FASD Toolkit” at do2learn.com.

Also of interest to educators has been an approach sometimes called “cognitive rehabilitation,”(or “cognitive habilitation”) in which children are trained in the skills underlying learning (such as attention or organization). This approach has been used in children with other disabilities or learning deficits, such as those that occur after traumatic brain injury or in the presence of ADHD. Strategies drawn from this approach are being used in current FASD intervention research (e.g., Coles et al., 2006). Approaches using a sensory-integration framework are also of interest to educators (and occupational therapists) because techniques based on this framework are thought to help children learn to cope and self-regulate, thereby allowing better classroom performance and adaptive behavior. Intervention ideas based on data gathered from a sensory integration framework have been suggested (e.g., Jirikowic, 2003), incorporated into FASD intervention models (e.g., Carmichael Olson et al., 2004), and drawn from recommendations by multidisciplinary FASD diagnostic clinic teams (e.g., Gelo, personal communication, June, 2006). Anecdotal reports note such intervention ideas are quite useful.

As yet, there is few research data showing whether these promising ideas for learning and behavior management in the classroom would actually work with children prenatally alcohol-exposed or actually diagnosed with FASD. But techniques drawn from these frameworks are just beginning to receive attention in research with children who have FASD, both in terms of direct child-focused intervention (e.g., Adnams et al., 2006; Coles et al., 2005) and as a source of information for creating accommodations in the home and school environments (e.g., Carmichael Olson et al., 2005; Chasnoff et al., 2003). One area of vivid interest is early intervention.

Another area of specific educational interest is computer training for somewhat older children with FASD. One research group has created a fire safety computer-training program, teaching simple but essential fire safety skills, with promising results (e.g., Coles et al., 2006). This is an exciting area because of possibilities seen in computer training of other skills (such as social skills)—or attention training in virtual reality environments or computerized neurobehavioral feedback training.

A final promising area of educational interest lies in FASD intervention that can respond to higher-level language deficits that many believe are common among children with FASD. So far this framework has been used to create accommodations in home and school environments (e.g., Carmichael Olson et al., 2004). But careful step-by-step research in this area is underway. Researchers are carefully describing the social communication, higher-level language, and social skills deficits among children with FASD, especially in “real-life” classroom situations with peers (e.g., Coggins et al., 2003; Svennson, unpublished dissertation; Timler, Olswang & Coggins, 2005). With careful descriptive data, tailored interventions can eventually be created to respond directly to the social communication and social skill deficits this group of children show.

Some innovative researchers have begun to compare different types of educational strategies used in very high-need school situations. In South Africa, for example, Adnams and her colleagues (2006) are comparing several different school-based programs to see what can make a difference for children drastically affected by prenatal alcohol, poverty, and many environmental risks. Example classrooms have been created that can be thought of as “laboratories” for producing and testing good teaching and classroom management ideas, as detailed at the SAMHSA FAS Center for Excellence site.

What is needed to advance FASD intervention through educational strategies and curricula? Here are some ideas:

• Continue to train educational staff, evaluating the success of training efforts.

• Test some of the most promising educational intervention strategies.

• Expand and evaluate the ways in which computer training can be used with children who have FASD.

• Expand the activity of regional centers and centers providing FASD diagnosis and intervention to provide targeted school consultation.

Early intervention

Early interventionists can be the first to grasp the real hazards of prenatal alcohol exposure, referring for diagnosis, alerting caregivers to emerging learning and behavior problems, and connecting families with needed services (even alcohol treatment). Suggestive, early animal research indicates that early intervention has the potential to ameliorate at least some deficits found among those with FASD (e.g., Goodlett et al., 2005). But what kind of early intervention would help? In general, early intervention research suggests services are likely to be most successful when family support is provided along with high-quality direct intervention with young children that uses proven educational techniques. Supportive services from occupational therapists and speech-language pathologists also add to the possibility of intervention success. A “developmental systems model” has been suggested to help better understand how to create a system of effective early intervention services for children with FASD and their families (Carmichael Olson et al., in press).

One research group working within a child guidance center in Georgia, has created a program for children born prenatally alcohol-exposed. Described very briefly, this program first aims at learning readiness (through case management, behavior management training for parents, and more). Then young children are taught early math and handwriting skills using well-known, evidence-based early education curricula. Their parents are taught skills to support children’s learning in these areas at home. Initial findings are quite promising (Kable et al., 2006). Another research group, working within a child guidance center in Oklahoma, is applying well-known “parent management training” techniques to help improve relationships and enhance compliance with adult instructions among young children born prenatally alcohol-exposed (Gurwitch et al., 2003).

Related ideas for early intervention are emerging from research on infant mental health that (in part) focuses on improving parent-child attachment relationships, developmental expectations, and parenting strategies. Researchers have proposed that infant mental health techniques can help children living in families with parental polysubstance abuse—and have potential for children born alcohol-exposed (e.g., Carmichael Olson et al., 2001). For more information about early intervention, see Carmichael Olson et al., in press.

What is needed to develop early intervention for FASD? Many ideas are offered in the article mentioned above. Here are key ideas:

• Develop and provide systematic training on FASD for early intervention providers, including the full range of daycare providers, preschool special educators, therapists serving developmental centers, Headstart personnel, and more. Because early intervention occurs in many systems, training has to be a wide-ranging effort.

• Screen for prenatal alcohol exposure and FASD in early intervention settings so that children in need of intervention can be recognized and referred.

• Work toward regulations that allow early intervention to be provided for children who are “at-risk” because of prenatal alcohol exposure, in addition to the children who have received a clinical diagnosis.

• Promote collaboration between child welfare workers and early intervention providers in serving children exposed to substances before birth.

Parent support networks and related services

Parent support networks, the natural supports and practical ideas they provide to parents— and the possibilities they present as platforms for creating services— make these networks a vital part of the continuum of FASD intervention.

Over the past 15 years, a vibrant and important parent support/advocacy network has been established, in the U.S., Canada, and in many other countries. These have taken several forms. There are Internet mail lists and listservs, such as FAS Link (based in Canada). There are grassroots family organizations, such as the FAS Family Resource Institute (FAS*FRI) in the state of Washington, the Family Empowerment Network in Wisconsin, and the Minnesota Organization on Fetal Alcohol Syndrome (MOFAS). There are key family advocates—individuals who are pioneers in the field of FASD— and organizations— who have worked in a variety of ways to raise community awareness, offer parent support, and mobilize FASD intervention, in many states, provinces, and countries. Indeed, there is now a national family support/advocacy organization in the U.S., called NOFAS, that is well on its way to assembling a network state affiliate family organizations.

Parents have been the source of a great deal of clinical wisdom in the field of FASD, and parents have also collaborated with professionals interested in FASD. Clinical wisdom can be found in newsletters (such as Iceberg, produced in Washington state, or FENPEN, produced in Minnesota), books (such as the Fantastic Antone series edited by Kleinfeld, and many other books), and videos (such as the series produced by Vida Communications). Family support/advocacy organizations have also created useful curricula, such as the Tools for Success juvenile justice resource guide, produced by the Minnesota Organization on Fetal Alcohol Syndrome.

Families can and do provide natural supports and practical ideas for each other. Family support organizations offer important training and intervention through community gatherings (such as those for International FASD Awareness Days), parent groups, parent retreats, family retreats and summer camps, youth social skills groups, parent mentoring, and more.

What is needed to advance FASD intervention in parent support/advocacy efforts? Here are some ideas:

• Continue to organize and promote non-profit FASD parent support/advocacy efforts, including linking groups together to provide momentum, ideas, and opportunities to access funding. Start these support/advocacy efforts in locations where none exist.

• Link family groups with FASD training, diagnosis, and intervention efforts provided by professional organizations. The expertise of families is essential. For example, include family advocates as a member of an FASD diagnostic team, or consult ongoing with family advocacy organizations when developing or implementing FASD intervention programs.

• Systematically evaluate the impact of parent and family participation in parent support/advocacy programs (parent groups, summer camps) as a form of FASD intervention.

Summer camps, year-round camp locations, recreational planning (in general), and respite care

Recreational and leisure time planning is an area of FASD intervention that should not be overlooked. Leisure time, for individuals of any age, is unstructured time that can demand a person’s most highly developed organizational skills—yet satisfying leisure time is central to self-care, positive mood, self-esteem, and even good health. Often leisure time is the least supervised and most peer-oriented time for a child or teen with FASD.

Formal educational curricula should include direct teaching of leisure time activities. Parents can teach hobbies, foster participation in sports and organizations that interest their child. FASD family support/advocacy organizations can be a platform for organized recreational activities, such as teen groups, social skills groups or summer camps. Indeed, FASD-oriented summer camps and year-round camp locations, such as the White Crow Center in Canada, are developing through the efforts of caring communities. Camps have many advantages: providing respite, bringing families (and professionals) together for intensive learning and support, bringing children and teens together to form friendships, and giving older affected individuals useful and protected work experience. But many existing organizations serving individuals with developmental disabilities and chronic health conditions also already offer excellent programming quite useful for FASD intervention, such as Special Olympics, skiing and outdoor sports, and water sports.

Respite has many definitions for caregivers, including time away from children for adult self-care and couple activities… or time with children that is satisfying and builds positive relationships. Respite funding is an essential part of FASD intervention that can be instrumental in reducing caregiver burden and preventing placement disruptions.

What should be done to promote FASD intervention through recreational planning and respite? Here are creative ideas:

• Support development of summer camps and year-round camp locations, and systematically evaluate their impact on child and family function—and on effectiveness of training for professionals.

• Increase flexible funding for respite care.

• Ensure parents raising individuals with FASD know about organizations offering chances for appropriate recreation through Web sites and resource centers.

• Educate providers in other organizations (such as the ARC, Special Olympics, and so on) about FASD and opportunities for support in other programs.

Direct child-focused treatment

Children, teens and adults with neurological impairment because of FASD are thought to have a wide range of learning and behavior difficulties that require specialized or modified treatment techniques. Treatments offered directly to children and older individuals with FASD are, as of now, a relatively unexplored research area— but there are exciting ideas being tried by clinicians and families every day. From what we know from descriptive research on FASD and related childhood disorders (such as traumatic brain injury), neurological impairment means atypical learning. Progress is likely to be slow. But research with animals, and new research with children diagnosed with FASD, shows us that learning can, does and will take place—if we understand how to offer information and support learning.

What are promising strategies for child-focused treatment? There are many, although they have not been written about in detail, and reviews are still underway. Especially important are techniques focused on the deficits most commonly found in the FASD population. To remediate deficits in attention and executive function, social skills and behavior regulation, researchers have discussed cognitive control techniques, friendship skill-building groups, social skills groups, calming techniques and neurobehavioral feedback. Current researchers are studying these techniques in U.S. states such as California, New Mexico and Washington, and in other countries such as Canada and South Africa. Researchers such as Mary O’Connor, Wendy Kalberg, Tracy Jirikowic, Kimberly Kerns, Colleen Adnams, Julie Quamma and many others are exploring these strategies. See also the “educational strategies” section for brief discussion of interesting child treatments such as cognitive rehabilitation and computer training. See the “early intervention” section for other direct treatments for young children aimed at learning readiness and education.

What is needed to advance direct FASD intervention for children?

• Gather together information about direct intervention techniques in a systematic literature review (this is underway).

• Carry out systematic research on the promising techniques described above!

Groups for teens, and retreats and resources for adolescents and young adults

The life phases of adolescence and young adulthood are an especially difficult time for those with the complex yet often subtle neurodevelopmental disabilities that characterize FASD. Useful intervention during these phases of life has been a glaring omission in the continuum of FASD intervention. Groups for teens and young adults diagnosed with FASD are one promising new direction. Another relatively new direction lies in special retreats and conferences that provide young adults with FASD a chance to gather together, discuss issues of special concern to them, and perhaps prompt action on public policy.

Researchers are now developing models for teen groups. These groups have a central focus on learning and practicing social skills— including how to appropriately establish intimacy and build trusting, positive peer relationships. Such teen groups can provide developmentally appropriate (and very literal) education about such topics as substance use, dating and sexuality, and provide ideas for leisure time activities and jobs at which the teens can be successful. Because these teen groups are a safe forum for talking about sexuality and related issues, they can also serve a role in FASD prevention. Teen groups might also provide siblings of individuals with FASD a chance to process some of their own issues. Experienced clinicians are developing an innovative teen group model as a program within the continuum of family support services offered by the Washington state affiliate of NOFAS, led by Allison Brooks.

Support and resources for older adolescents and young adults are clearly important, yet have not been easily available. Within the past few years, a small but growing number of retreats—in Michigan and Alaska, for example— have been organized for adolescents and young adults with FASD. Generally, these retreats require that the diagnosed individual bring along a support person. As increasing numbers of individuals with FASD are diagnosed, these opportunities for adolescents and young adults to gather together will likely become more and more important.

What is needed to advance FASD intervention for adolescents and young adults? Here are a few ideas:

• Create curricula and procedures for teaching teen groups and young adult retreats.

• Initiate these groups and retreats in association with FASD parent support/advocacy organizations, or with organizations that focus on developmental disabilities, youth services, or mental health.

• Systematically evaluate the impact of these intervention efforts.

Direct treatment and living and work assistance for adults

There are many life issues faced by older adolescents and adults with FASD. But there are also many promising ideas. With older individuals affected by prenatal alcohol exposure, treatment is usually “multimodal,” with many different types of treatments necessary and applied as needed over time (Streissguth & O’Malley, 2000). For these older individuals with FASD, an essential idea is that intervention can occur using an “advocacy model” (Streissguth, 1997). Briefly put, this model hinges on the central idea that at least some older adolescents and adults with FASD need an advocate who can “translate” the affected individual’s actions to the world— and help the affected individual understand his or her own actions (and how others respond). What happens when the advocacy model is used? Something essential: An interested and caring advocate helps an individual with FASD negotiate life tasks and learn necessary skills.

Family support organizations have suggested action steps, policy directions, and creative ideas for how to advocate for older individuals with FASD. Advocacy resource guides have been published. In Canada and elsewhere there are interesting grassroots and professional efforts now underway to create adapted work environments for those with FASD. A few supervised living arrangements now exist that can serve the needs of those with FASD. One example is “The Willows” in the state of Washington. This residential facility provides transitional housing for pregnant and parenting women participating in an intensive paraprofessional parent support program. (For more information, visit the Fetal Alcohol & Drug Unit (FADU) site of the University of Washington and search for “The Willows.”)

Is there a role for individual counseling for those with FASD? As Huffine (personal communication, October 29, 2006) notes, individuals with FASD have a broad range of neurodevelopmental disabilities that affect all aspects of adolescent and adult development. Teens with FASD experience the pressures of the normal adolescent process, but may lack the right tools to handles these pressures. Effective counseling must be carried out with a clear knowledge of the affected individual’s own areas of strength and difficulty— and by knowing the “normal” process of adolescent development (including what the family considers “normal” social risk-taking and family protection). With this information in mind, counseling can be practical, solution-focused and adapted to deal with the social skills problems, difficulties managing emerging sexuality, educational frustrations and other age-related concerns that are part of growing up with FASD. A counselor may be best accepted if they are seen as an advocate or mentor—someone who the youth with FASD feels is “there for me.” A counselor may be most useful in mediating the sometimes confusing and complex relationships individuals with FASD have with others. Professionals who know about FASD and its developmental impact, and who are flexible enough to adapt their counseling approaches, can likely be very helpful to a teen or young adult with FASD. This kind of knowledgeable professional can also be helpful as part of a team— supporting parents, teachers, and other service providers in working toward the delicate balance between providing an extra measure of structure and the very age-appropriate need of a youth with FASD to take some social risks and test their readiness and capacity for adult life.

At present, there is little research that has tested treatments for older individuals with FASD. The best information can still be gained from the wisdom of parents and clinicians who have worked to help older individuals with FASD to become successful. The issues of appropriate adult advocacy, intimacy, parenting, living, and work arrangement—as well as direct treatment for older individuals with FASD— are myriad and complicated. The questions below address only some of these issues and must be answered before research can be most effective.

What is needed to advance FASD intervention, living and work arrangements for older individuals?

• Can supervised living arrangements be created? What kinds of supervised living arrangements are practical? How can they be funded? Who needs what kind of supervised living arrangement? How can these be evaluated for effectiveness?

• What is the best way to adapt work environments for those with FASD, who have individually variable cognitive, learning and behavioral deficits? How can adaptation strategies be evaluated?

• What are the solutions to the long-term planning problems—financial, legal and more¬—which face families caring for adult individuals with FASD?

• How can counselors be best trained to adapt their approaches for youth with FASD?

Parent support/education models

A wide variety of parent support/education models are central to the continuum of care for FASD: Parent education groups; support provided to caregivers by case managers; birth parent paraprofessional support services; and individualized, specialized services offered by mental health providers.

The central issue in caring for individuals with neurological impairment is that an affected individual finds it hard to learn and change. This means that much of what needs to be changed is the environment that surrounds the individual with FASD. The caregiver must make changes. With this in mind, a variety of parent support/education models have been developed. There are well-used and also newly developed parenting education curricula coming from FASD advocacy groups, state FASD organizations (such as the Office of FAS Alaska, and organizations serving those with developmental disabilities (such as the ARC). These organizations use the curricula to educate parents across the U.S. and Canada.

There are interesting new efforts to create caregiver support through the use of knowledgeable “key workers” or case managers. Often these key workers are connected with FASD diagnostic clinics or FASD support/advocacy organizations, and may be experienced parent or family advocates who are actually raising children with FASD themselves. For example, a large system of key workers, housed in a variety of local agencies but connected in some way to FASD diagnostic services, are just now forming across western Canada. In many diagnostic clinics, there are already case managers who perform the tried and true services of linking families to needed community services (if available). At times, however, these case management services are not tailored to the wide-ranging and sometimes unexpected needs of families raising individuals affected by prenatal alcohol exposure.

A special category of parent support services has been created, tested and found effective with the highest risk group of women with serious chemical dependency (or who have FASD themselves). One important model is the Parent-Child Assistance Program (P-CAP; Grant et al., 2005), which has expanded across the U.S. and Canada. In the P-CAP model, paraprofessionals (or local community mentors) work on an individual basis with very high-risk women over an extended period of time. They support women through recovery from substance abuse and life turbulence. They help women define their own new life goals, understand their own motivations, and work toward achieving these new directions. Often they support women in parenting more effectively, and may work with women who themselves have FASD.

There are also specialized mental health services offered as individualized parent support/education programs. These specialized mental health services can be helpful to birth parents in recovery, to adoptive parents and to foster families, who are raising children from preschool through the middle school years. A model program of this type is called the “Families Moving Forward Program” (Carmichael Olson et al., 2005). Briefly put, this is an individualized, home-based behavioral consultation (paired with caregiver support and education) that is aimed at helping families raising school-aged children with FASD and clinically concerning behavioral problems. This is a flexible program, which may also be useful in clinic settings or offered online, now being tested in careful research. (See the section on specialized mental health services for more information about the Families Moving Forward Program.)

What is needed to promote parent support/education programs for FASD intervention? Here are some ideas:

• Expand the number of programs, so that a wide range of parent support/education services become accessible.

• Systematically evaluate these group and individualized programs, choosing promising models that work—and learning how to match programs and families.

Specialized mental health services

Specialized mental health services are essential. These can include: neuropsychological evaluation, medication management— and, especially, clinic-based (or home-based) specialized behavioral consultation.

Research shows that many children with FASD have behavioral problems (e.g., Mattson & Riley, 2000), psychiatric difficulties (e.g., O’Connor et al., 2002) and difficulties with adaptive function that are greater than expected, especially in middle childhood and beyond (e.g., Whaley et al., 2001). A natural history study of secondary disabilities shows very high rates of mental health problems and a clear need for treatment (Streissguth et al., 2004). A logical conclusion is that specialized, tailored mental health services are essential for families raising children with FASD— and for the individuals with FASD themselves. Such services can include neuropsychological evaluation, medication management, and clinic-based (or home-based) behavioral consultation.

Assessment of learning profiles has been highlighted as essential in intervention for children with FASD (Kalberg & Buckley, 2006). For adolescents and adults with FASD, neuropsychological evaluation (and follow-up case management) is especially important. Neuropsychological evaluation can document learning deficits and provide guidance for job training and vocational rehabilitation, the need for supplemental supportive income, and ways to adjust or adapt other adult services (even correctional efforts). Clinical neuropsychological services specialized for individuals with FASD are opening, such as one at the University of Washington’s FADU department. Beyond clinical efforts, neuropsychologists have published a growing stream of research that teases apart the diverse cognitive deficits seen among individuals with FASD. This is a vivid area of research, and much will be learned in the next few years.

Research data so far suggests that psychoactive medications are often used with children diagnosed with FASD who show externalizing and other behavioral problems (e.g., Carmichael Olson et al., 2005). Anecdotal reports suggest that medications are also frequently used with adolescents and adults. Psychoactive medications are used for a variety of reasons, including management of mood, activity, impulsivity and attention, sleep problems and so on. Experts (and families) have been calling for research on medication management for children with this set of neurodevelopmental disabilities, and while some studies have begun, this is a very challenging endeavor.

Clinical wisdom in the field of FASD has highlighted a combination of parent education and support with behavioral consultation that provides practical strategies for families raising children with FASD, as a very promising approach to FASD intervention. This type of help is especially important for families who are in crisis, or whose needs go beyond those that can be helped by participation in parent support groups or listservs alone. In the past few years, this type of intervention has been piloted by pioneering researchers such as Diane Malbin.

One recent research effort has focused on systematically creating, carefully describing, and testing an intervention model called the Families Moving Forward Program, that captures this clinical wisdom (Carmichael Olson et al., 2005). This research tests the impact of an individualized, home-based behavioral consultation (paired with caregiver support and education) that is aimed to help families raising school-aged children with FASD and clinically concerning behavioral problems. This program does try to help the children at highest risk for later secondary disabilities and difficulties in day-to-day function— so their learning and behavior problems are very significant and change may be slow. Once an evidence base is established, programs such as the Families Moving Forward Program can be streamlined and improved, and transitioned to the community (in a variety of locations) to make them more accessible. Research on these programs can help define the important treatment process to be used in mental health services for children with FASD and their families.

What is needed to move specialized mental health services for FASD intervention forward? Here are a few ideas:

• Do careful research to describe FASD, including studies using psychological testing, MRI and other neuroimaging methods. It is important to understand the more common learning and behavioral deficits in FASD—and the underlying problems in brain structure and function. It is also important to understand the course of these problems over the lifespan.

• Educate mental health providers about FASD.

• Work toward recognizing FASD in mental health diagnostic codes.

• Continue research on promising intervention models for specialized mental health services!

Specialized training and consultation for professionals

Specialized training and consultation for professionals working within systems other than mental health are also crucial. This includes consultation to schools, juvenile justice systems, social services, legal and judicial systems, and substance abuse treatment systems.

In FASD intervention, parent support and training have received considerable attention. Mental health treatments for FASD have also become a focus of research and training efforts. But consultation to professionals working within systems other than mental health must be explored and pushed forward. Individuals with FASD have many secondary disabilities beyond family stress and mental health problems. They commonly experience disrupted school experiences, trouble with the law, difficulties with substance abuse and more. Some cannot work or live independently and so need lifespan social service assistance. Clearly, it is crucial to have supportive teachers, juvenile justice workers, legal professionals, social service providers and others who know and understand FASD.

Over the years, centers of FASD expertise have developed and now provide increasing amounts of training and consultation. More recently, professional journals in a wide range of disciplines have published reviews about FASD—and experts on FASD within different disciplines have begun to emerge. In education fields, training materials and curricula have been produced for teachers and more are underway. Researchers are also beginning to systematically develop and test educational intervention techniques. There are now several field demonstration initiatives, funded by SAMHSA, that are working to consult with the juvenile justice system. These are described on the FASD Center for Excellence Web site. SAMHSA has also put together model curricula for training juvenile justice workers and chemical dependency providers. Efforts to advise the legal system have been initiated, such as the Fetal Alcohol Syndrome Legal Resources Center at the University of Washington. (For more information, visit the Fetal Alcohol & Drug Unit (FADU) site of the University of Washington and search for “legal issues.”)

Growing a body of field-initiated research, accumulating descriptive research and smaller intervention studies, and carefully planning and executing controlled trials of promising intervention models are needed to advance FASD intervention research. In turn, as researchers learn more about the processes underlying effective treatment for FASD, training and consultation can be refined and become more evidence-based.

What is needed to advance consultation services for FASD intervention for disciplines other than mental health? A few ideas:

• Carry out well-planned FASD intervention research.

• Maintain regional training centers and centers of expertise on FASD, so that consultation can be organized and of high quality.

• Raise the question of how to respond to FASD with professional organizations for these disciplines.

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