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.