Building the Right Team

FASD assessment, as will be explained below, involves gathering information and making evaluations in a variety of functional areas, and is an involved process that can overwhelm the client and his or her family. This necessitates a wide range of professional skill sets, not only to perform the various clinical and observational tasks, but also to help the client and family navigate the process smoothly. The box “In-House FASD Assessment: An Ideal Core Team” describes an ideal in-house FASD assessment team and its functions.

Part 2, Chapter 2 of this TIP outlines appropriate processes if these professionals need to be added and/or accessed through referral relationships.

Accessing the Right Resources

Appendix C, Public and Professional Resources on FASD, provides information and links for accessing FASD information and training from a variety of national and regional sources.

Among these are two excellent resources for agencies seeking to develop FASD capabilities; the Washington State FAS DPN and the CDC's FASD Regional Training Centers (RTCs).

• One of the primary sites for FASD assessment and diagnosis in the United States is the Washington State FAS DPN, based at the University of Washington in Seattle. Established in 1993 through Washington State Senate Bill 5688 and support from the CDC, March of Dimes, Chavez Memorial Fund, and the Washington State Department of Social and Health Services, the Washington State FAS DPN provides FASD diagnostic services as well as training in FASD. Training resources include the FASD 4-Digit Diagnostic Code Online Course and a 2-day FASD Diagnostic Team training for interdisciplinary clinical teams (or individual clinical team members) seeking to establish FASD services in their community. Visit the FAS DPN's homepage (http://depts.washington.edu/fasdpn/) to find out more about their services.
• The CDC's RTCs develop, implement, and evaluate educational curricula regarding FASD prevention, identification, and care, and incorporate the curricula into training programs at each grantee's university or college, into other schools throughout their regions, and into the credentialing requirements of professional boards. Visit the CDC's RTC homepage (http://www.cdc.gov/ncbddd/fasd/documents/flyerfasd_rtcs.pdf) to find out about currently funded RTC sites and available services.

Gathering the Right Information

A useful tool that your team can use to gather and organize the necessary information to support a formal FASD diagnosis is the New Patient Information Form. This form was developed by the Washington State FAS DPN and is part of the Diagnostic Guide for Fetal Alcohol Spectrum Disorders: The 4-Digit Diagnostic Code (Astley, 2004b, Third Edition, pp. 103-114). If your agency decides to refer a client for an FASD diagnosis, this information will provide a necessary foundation for the diagnostic process. The New Patient Information Form can be downloaded for free from (http://depts.washington.edu/fasdpn/htmls/diagnostic-forms.htm).

In addition to basic information about the client and your agency, the New Patient Information Form provides a template for gathering information in the critical areas of Growth; Physical Appearance and Health; Neurological Issues; Attention Deficit and Hyperactivity; Mental Health Issues; School Issues; Alcohol Exposure; Information About the Patient's Biological Parents; Medical History of the Biological Family; Pregnancies of Birth Mother; Pregnancy, Labor, and Delivery of this Patient; List of Professionals Currently Involved in Patient's Care; Placements (foster, adoptive, etc.); and What to Bring to the [diagnostic] Clinic.

To further ensure collection of appropriate information and build staff knowledge and capabilities related to FASD, it will be valuable for your team to become familiar with the basic guidelines of the most widely used diagnostic approaches to the various disorders in the spectrum. A comprehensive comparison of the current FASD diagnostic systems is presented in a chapter entitled “Diagnosing FASD” (Astley, 2011), and is reprinted in Appendix E, Comparison of Current FASD Diagnostic Systems with the author's permission.

Safety Considerations

Safety is a primary health issue for individuals of all ages with an FASD (Jirikowic et al., 2010). Starting a treatment process without first addressing safety issues is futile and potentially dangerous: The clinician must first evaluate physical safety for the adolescent or adult with an FASD. This includes issues of violence, harm to self (such as self-mutilation) or others, victimization, adequate housing, and food. In typical adolescents and adults, psychiatric severity can be significantly reduced when co-occurring issues are treated together and mental health and substance abuse treatment are provided as an integrated program (Hser, Grella, Evans, & Huang, 2006).

For older individuals who have or may have an FASD, there are special safety considerations. This population has a number of risk factors for accidents and injury; poor decision-making, impulsivity, impaired motor coordination, working memory, attention, emotional and sensory regulation, and susceptibility to peer pressure. Even seemingly routine tasks like crossing the street safely may be impossible for those who are more severely affected. Other examples of possible safety and health concerns in adolescents and adults with an FASD are remembering medication schedules, decisions about legal and illegal substances, driving, and risk-taking situations in which poor social problem-solving (McGee, Fryer, Bjorquist, Mattson, & Riley, 2008), impulsivity, and peer pressure combine to compromise safety.

Vignette #9 in Part 1, Chapter 3 of this TIP elaborates the process of working with a caregiver to develop a personalized Safety Plan on behalf of an individual with an FASD. In addition, Appendix F, Sample Crisis/Safety Plan, contains a sample plan that has been adapted from the work of the Families Moving Forward Program (http://depts.washington.edu/fmffasd/), and can be printed and used with a client and/or their family member(s)/caregiver(s).

Modifying a Treatment Plan

Counseling Strategies

Due to the cognitive, social, and emotional deficits seen in FASD, counseling clients with these conditions requires adaptability and flexibility. Research data, clinical observation, and caregiver reports all suggest that it is crucial to tailor treatment approaches. Traditional approaches may not prove optimally effective, and more effort may be needed to convey basic concepts and promote a positive therapeutic relationship and environment. The following are recommendations designed to help providers:

• Set appropriate boundaries;
• Be aware of the client's strengths;
• Understand the impact of any abuse the client has experienced;
• Help the client cope with loss;
• Address any negative self-perception associated with an FASD;
• Focus on self-esteem and personal issues;
• Address resistance, denial, and acceptance;
• Weigh individual vs. group counseling;
• Consider a mentor approach; and
• Assess comprehension on an ongoing basis.

Sexual Abstinence, Contraception, and Pregnancy

Adolescents and adults with an FASD should be well informed and consulted about decisions regarding abstinence, contraception, and pregnancy. There are many ways to support pregnancy, delivery, and parenting by an individual with an FASD. The client may have questions about whether or not the FASD can be passed on to any offspring; caregivers must clarify that only prenatal exposure to alcohol can cause an FASD. If the client has children, the parenting skills taught to the client should account for the possible presence of an FASD in both parent and child; the skills learned must be appropriate to each of them and work for each of them.

Clinical experience reveals that women with an FASD can be vulnerable to exploitation and unintended pregnancy (Grant et al., 2004; Merrick, Merrick, Morad, & Kandel, 2006). It can be difficult for them to use contraception effectively due to memory lapses, problems following instructions, or difficulty negotiating contraceptive use with a partner. Counselors can help clients evaluate their family planning needs and assist in obtaining reliable, long-term birth control methods.

Although it may be unusual in a treatment setting, very practical and basic assistance may be important for a woman with an FASD. The counselor may need to accompany the client to a doctor's appointment to help her understand her options and choose the best one. One study found improved use of contraception among young women with an FASD by implementing a community intervention model of targeted education and collaboration with key service providers, and by using paraprofessional advocate case managers as facilitators (Grant et al., 2004).

Clinical consensus based on evaluation of common behavioral characteristics of FASD suggests that the causal relationship between HIV/STDs/viral hepatitis and substance use disorders may be heightened among those who also have an FASD. Care plans for individuals with an FASD entering substance abuse treatment should include communicable disease assessment.

Medication Assessment

In some cases, medication options may be appropriate to treat some of the functional or mental health components of FASD (Coe, Sidders, Riley, Waltermire, & Hagerman, 2001). The counselor may want to refer the client for an assessment to determine whether he or she can follow a regimen of taking a pill every day or getting a shot every few months. It is also important to consider the possible physical impact, since persons with an FASD may have health problems and be prone to side effects. Medications for individuals with an FASD may not work at rates similar to other populations and/or may require different dosages to work (O'Malley & Hagerman, 1999). Including a mentor or supportive family member in the discussion may help the individual with an FASD to be more comfortable asking questions and better understand what is being said.

Job Coaching

In a study of 90 adults with a diagnosed form of FASD, most had some work experience but the average duration was only 9 months (Streissguth et al., 1996). Some of the general barriers to successful work for people with disabilities are external; discrimination by employers, co-workers, and family, transportation issues, completing applications and job testing, social skills, and the lack of support at interviews. Other barriers are internal, and need to be addressed early on in the vocational process; self-esteem and self-worth, fear of success, self-sabotage, and having a realistic view of strengths and career goals. All of these internal factors affect career choice, self-presentation at the interview and the job, and ultimate vocational success (Fabian, Ethridge, & Beveridge, 2009; Leon & Matthews, 2010). These issues should be addressed through counseling and skills-building prior to standard vocational tasks.

A job coach or vocational rehabilitation counselor may need to remain involved with an individual with an FASD beyond the time when he or she seems to “know” the job, and be understanding if the individual has days or situations in which he or she can't remember what to do or gets overwhelmed. Individuals with an FASD may do well enough on a job that a coach or counselor decides they “get it” and stops providing support, when in fact it was the support that enabled success.

Vocational Rehabilitation

Vocational Rehabilitation should be viewed as an interdisciplinary team process. It may be up to a parent or caregiver to coordinate information. The team may include a physician for medical and health issues, an occupational/physical therapist, a psychologist for counseling to address some of the above issues, teachers, case managers, and job placement agencies (Gobelet, Luthi, Al-Khodairy, & Chamberlain, 2007). Some adults and families will choose sheltered workshops because of concerns about safety, transportation, long-term placement, work hours, maintaining disability benefits, social environment, and work skills issues (Migliore, Grossi, Mank, & Rogan, 2008). At the same time, the majority of adults with an intellectual disability prefer integrated employment over sheltered workshops, regardless of disability severity (Migliore, Grossi, Mank, & Rogan, 2007).

Treatment Plan Modification

It is generally believed that traditional forms of therapy, such as “talk therapy,” are not the most effective choice when working with adolescents with an FASD. Their cognitive deficits prevent them from developing insight or applying lessons to their real lives. However, with creativity and flexibility, a treatment plan can be developed that includes techniques counselors are familiar with and comfortable with, adapted to fit the needs of the client (Baxter, 2000).

Addressing Peer Influences

Clinical observations indicate that adolescents with FASD are socially immature, and research documents that adults with FASD are more suggestible (Brown et al., 2011). Developmental literature makes clear that peer influences are important in the adolescent stage, and that deviant peer influences can lead to antisocial behavior. The counselor should address issues such as peer pressure in treatment to set the stage for less risky behavior outside treatment. Linking an adolescent with an FASD with a mentor is a sound treatment strategy.

Ongoing Assessment for Comprehension of Information

As with adults, it is important to check often to make sure the adolescent client understands what has been said. Ask the client to summarize what you have said. Review written material, such as rules, at each session. Repeat, repeat, repeat, even if the client says, “You've told me this a hundred times.”

For adolescents, applying concepts can be difficult. Cognitive deficits, the frustration of having an FASD, and typical teen rebellion can make communication especially hard. Role-playing different situations, providing opportunities to share and process feelings, and giving the client time to process information is important. It also may help to use alternative methods of expression, such as drawing, to assist the client in sharing his or her understanding.

Educational Support (IDEA and FAPE)

The Individuals With Disabilities Education Act (IDEA) entitles every young person to a free and appropriate public education (FAPE) in the least restrictive environment. If the client is eligible, this can continue until age 21. If you have a client who has or may have an FASD and is in school, it is important to consult with the school regarding any provisions in that client's individualized education plan (IEP), either those identified by the school that should be carried over to treatment or vice versa. In a study of 120 children undergoing FASD diagnosis at a Washington State FAS DPN clinic, Jirikowic and colleagues (2010) found that over 90 percent did require intervention recommendations associated with their educational plan.

In the outpatient setting and during aftercare, it is a good idea for the psychologist to consult with the school counselor or case manager (if the client has one) regarding educational needs. Areas such as social skills may be addressed in the IEP, and are important to address during treatment and as part of aftercare. It also helps to be aware of any academic issues that may affect the client's treatment, such as stress about academic performance or difficulties with classmates.

Parents may not be aware of the laws regarding education of children with disabilities and may feel overwhelmed. They may be having problems dealing with their child's school and wonder what to do. The counselor can help by informing the client and family about IDEA and FAPE requirements and helping outline possible interventions to suggest to the school.

The U.S. Department of Education provides an online overview (http://www2.ed.gov/about/offices/list/ocr/docs/edlite-FAPE504.html) of the stipulations of FAPE and who qualifies for educational support under its terms.

In addition, vignette #10 in Part 1, Chapter 3 of this TIP discusses some of the key aspects of developing an IEP for an individual who has an FASD.

Psychosexual Development

Early and ongoing social experiences play a key role in psychosexual development. Adolescent tasks include having and maintaining intimate relationships, managing complex emotions and social situations, and developing independent thinking. The adolescent with an FASD may not achieve these milestones all at the same time, at the usual age range, or at all. Many adolescents with disabilities are delayed or prevented from achieving these goals by social isolation or a variety of functional limitations. Social skills may be broken down into manageable tasks, just as in every other area of instruction. This includes the basics first, such as mastering appropriate greetings, eye contact, body language, personal space, self-advocacy skills, and telephone and computer skills. A foundation in some or all of these basic skills will allow for the development of more complex skills. Mentors and peers may be very effective in this regard.

Vocational Coaching

Young adults with a disability need advocacy and support with a variety of new agencies and support services throughout the transition and adult years. A life skills curriculum should include how to use the internet to search for employment and employment enhancement services, awareness of issues associated with safe work environments, interviewing strategies, appropriate use of medication, managing finances, dealing with workplace routines and expectations, being cautious about at-risk situations, and knowing when to ask for help (Winn & Hay, 2009). Role-playing each of these skills with the client will be beneficial.

Thinking Ahead and Planning for the Future

It is important to think ahead and plan for the future with adolescents and young adults with FASD. If they are able to build an independent life, counselors can help the client learn how to self-advocate and self-monitor, and should communicate these skills to the client's caregivers, as well. It is important to think ahead about education on topics such as (1) safe sex; (2) communicating clearly with partners about consensual activity; (3) use of cigarettes and alcohol; (4) use of illicit substances, such as marijuana and drugs; (5) the consequences of criminal activity; and (6) ideas of what to safely do when the individuals goes through times of feeling irritable and negative (calming strategies).

Approaching the Family

It is imperative to obtain permission to approach family on the topic of an FASD. If the birth mother is still involved in the individual's care and is not aware of the possibility of an FASD, it is vitally important not to make her feel shamed or judged. The counselor should be prepared to address feelings of guilt. The family may also experience many of the feelings of anger, grief, and loss that the client experiences. All members of the family should be made to feel as comfortable as possible expressing these feelings.

If the family agrees to be involved, there are a number of ways that the counselor can support both them and the client. It is vital to use “reframing” to help the family better understand the client's behaviors as being at least partly caused by brain-based disabilities (Olson et al., 2009). A positive view of the affected individual, of the relationship between the caregiver and the individual, and of the caregiver process has been associated with more positive outcomes for the individual and family (Blacher & Baker, 2007). The counselor can then help the family reach out to extended family and friends to help them reframe the situation. Reframing can help everyone more positively understand the client's behavior, and appropriately adjust the home and school environments. Treatment approaches that stress problem-focused management and stress reduction may be a useful addition to parent training (Olson et al., 2009). Other suggestions include:

• As with the client, review the diagnostic report thoroughly with the family (if it is available). Chapter 3 of Part 1, Clinical Vignettes, contains a vignette illustrating this process.
• Help the family arrange for respite care or a community support worker: Caregivers may feel stressed or burned out by the responsibilities of caring for someone with an FASD.
• Assist family in coming up with ways to educate extended family and friends about FASD to help them understand the client's behaviors and adjust the home environment accordingly.
• Connect family and friends with support groups or other community resources (see Step 6).
• Help find long-term mentors for clients. Family members or friends who have become exhausted or burned out dealing with an FASD may be willing to help after a mentor has stepped in for awhile and the client has made progress.
• Encourage parents and caregivers to maximize independence, even if they are used to “helping” or completing tasks for the client.
• Help the family access needed services and supports (see Appendix G, Services and Supports Checklist, for a list that can be used as a worksheet).

The Families Moving Forward Program intervention is a scientifically-validated behavioral consultation program tailored for families raising preschool and school-aged individuals with FASD or confirmed prenatal alcohol exposure. The intervention includes methods and materials that appropriately trained counselors can use when working with families of a client who has an FASD, even if the client is older (http://depts.washington.edu/fmffasd). See Appendix F, Sample Crisis/Safety Plan, and Appendix G, Services and Supports Checklist, for materials that have been adapted from the Families Moving Forward Program for this TIP.

If the client had an existing diagnosis of an FASD before presenting in your setting, involving the family is still valuable. Caregivers are probably already well-versed in FASD and the difficulties of obtaining effective services, and can be as much of a resource of information for the counselor as the counselor is for the family.

Network of Providers

Counselors need to be familiar with available resources in the community, such as psychiatrists, social workers, developmental disability providers, and physicians. Counselors can include referrals to these resources in the transition plan and work with case managers at their facility as appropriate. For clients who are still in school, it is also important to consider the transition to school, and to work with school administrators and/or the school counselor to determine how best to address the client's ongoing needs within the school setting.

It may also be necessary to consult an advocate or legal representative if the client has had any legal problems. Adolescents with an FASD can get pulled into illegal activity or manipulated into relapses.

Mentorship

Locating a long-term mentor within the person's sphere of relationships can be another way to support the transition process. Providing tips and strategies for things that have worked well with the client during treatment can enable the mentor to provide support in the future (Schmucker, 1997). There are also organized programs that can help to identify mentors, though these resources are scarce and differ by community.

If the family is involved in treatment and the client had an existing diagnosis of an FASD before treatment, it is likely that they will have developed relationships with a variety of providers and can thus potentially be a useful resource for information on services available in the community. There are a number of things that should happen during transition planning that a parent or caregiver could help to facilitate, such as introduction to the relevant service providers and transfer of information to those agencies.

Assessment of Living Skills/Planning for Safety

Even if taught as part of treatment, basic functional living and social skills will need to be re-assessed before transition to help the client function more effectively and safely in the community. The provider should work with the client to:

• Assess ability to handle money, pay bills and rent, buy groceries, etc. The clinician can consider a representative payee, if necessary.
• Anticipate housing needs: Will the client live alone? With caregivers? With others in structured housing or a group setting? An individual with an FASD is likely to need dedicated, long-term caregiver support in any setting, but this is particularly vital if they will be living alone. Assistance is likely to be needed with negotiating public transportation, handling interpersonal relationships, grocery shopping, and structuring leisure time (Streissguth et al., 1996).
• Identify job desires and possibilities, as well as what is needed for job success.
• Review appropriate social interaction.
• Review processes for checking whenever the client is unsure of a situation or response, or is in trouble.
• Ensure that learned skills are practiced in the new environment.
• Continue supports at least until the client adjusts to the new environment.

If a mentor, family member, or other caregiver is identified for the client, Vignette #9 in Part 1, Chapter 3 of this TIP walks through the process of working with that person or persons to develop a personalized Safety Plan on behalf of an individual with an FASD.

Job Support

Your local One-Stop Center (www.careeronestop.org) may provide links to your state Department of Labor and Workforce Development, the local division for vocational rehabilitation services, and/or specific state initiatives for development of customized employment for people with disabilities. For individuals with an FASD, customized employment should include a protocol that addresses their special needs.

Self-Help Participation

The person with an FASD will need support to participate successfully in a 12-Step program. Many areas of the country have “Double Trouble” meetings; these are 12-Step self-help groups designed to meet the special needs of people with addiction and mental health issues (Vogel, Knight, Lauded, & Maura, 1998). Double Trouble meetings may be more flexible about impulsive behaviors than routine meetings. The counselor should be cautious about referring a client who has or may have an FASD into a self-help group, due to issues of victimization as well as the possibility that the individual's special needs will not be met.

Another significant resource for people with an FASD and co-occurring issues is the recovery movement in the mental health field. Recovery centers (also known as “drop-in” centers) offer a variety of supports, groups, and meetings in some areas.