Help for Families, Parents, & Caregivers

There is no right or wrong way to feel and react to a diagnosis of FASD for your child or other family member. The process for families can be difficult. The world of FASD and other developmental disabilities is, most likely, one with which families may be entirely unfamiliar. Finding appropriate services for your family member is often dependent upon their age at the time of diagnosis. It is important to remember that New Jersey’s departments and services operate under federal and state laws and regulations which may result in some constraints in the delivery of services.

  • Below are some initial steps you can take to learn about and access available services:
    • Start a system for organizing reports and notes.
    • If a child is under the age of 3, contact the New Jersey Early Intervention System at 888-653-4463. Staff there will assess your child and provide appropriate intervention services.
    • Consult with your county based Special Child Health Services (SCHS), Case Management Unit (CMU) about community based services, State and/or Federal services, and supports for your child age birth to 21 years of age. You may find your county’s CMU by calling the Department of Health at 609-777-7778 or referring to Department’s website at: https://www.nj.gov/health/fhs/specialneeds/contacts.shtml
    • The Department of Children and Families (DCF), Children’s System of Care (CSOC) offers a wide range of services for children up to age 21 with behavioral health, substance use, or developmental disability needs. To provide access, DCF contracts with PerformCare which is a private entity that administers this service system. 24-hour, toll-free Access Line at: 1-877-652-7624 or http://www.performcarenj.org/index.aspx
    • Learn more about Special Education:
    • Contact the Department of Human Services, Division of Disability Services at 1-888-285-3036 for live assistance in navigating State services from an Information & Referral specialist and to request New Jersey Resources, DDS’ annually updated resource directory.
    • Learn about eligibility requirements as well as possible costs associated with specific services since they vary from program to program. Be sure to visit each department’s website or directly be in touch with staff associated with the services in order to ensure that you qualify for the program or service. Links to each department’s website can be found at https://fasdnj.org/state-agencies-providing-services/
    • Work toward a routine schedule for your child at home. Try making a list of your daily activities using pictures or words in order to assist your child with an FASD.
    • Consult a behavior therapist who can teach you strategies for increasing desired behaviors. Your child’s doctor, New Jersey’s Child Evaluation Centers (https://fasdnj.org/child-evaluation-centers/), and agencies that provide family support services, including those listed under Partner Agencies (https://fasdnj.org/state-agencies-providing-services/), can assist you with this process.
    • Find a Support Group or connect with a Support Parent (see partner agencies at https://fasdnj.org/health-wellness-supports/).
    • Talk with a parent of someone with an FASD who has volunteered to support/mentor other parents (see partner agencies at https://fasdnj.org/health-wellness-supports/).

Age Related Advice for Families

  • INFANCY/EARLY CHILDHOOD (BIRTH – 5 YRS)
    • Utilize low lights, follow a routine, and decrease stimulation for better sleep
    • Schedule mealtime and reduce distractions to encourage optimal nutrition
    • Seek evaluation for possible developmental delays/learning disabilities through Early Intervention (EI) (age birth-3 years) or Preschool Handicapped Services
    • Provide structure and routine
    • Utilize calming activities, family and community supports
    • Utilize positive reinforcement and provide immediate and consistent consequences
  • MIDDLE CHILDHOOD (5 – 10 YRS)
    • Assist your child in developing friendships with younger children, one at a time
    • Encourage your child to participate in clubs with structured activities
    • Create a structured environment with clear and predictable routines
    • Keep activities brief and offer one-on-one assistance with homework
    • Use calming techniques for tantrums
    • Ensure consequences are consistent, clear and immediate
    • Communicate with the school regarding your child’s educational needs
    • Consider identifying resources for respite for both the child and the family
    • Discuss sexual education
    • Discuss alcohol and other substances
  • ADOLESCENCE (11 – 21 YRS)
    • Encourage participation in structured activities
    • Closely monitor activities and whereabouts to promote and maintain safety
    • Create an open dialogue about appropriate and inappropriate touch
    • Discuss sexual education
    • Structure daily routine and activities
    • Keep rules simple and consistent
    • Provide consistent reinforcement for positive and negative behavior
    • Regularly reiterate rules
  • ADULTHOOD (21+ YRS)
    • Contact the NJ Division of Developmental Disabilities (DDD) at 800-832-9173 to explore residential resources
    • Enroll in group activities such as adult classes or clubs to maintain social relations
    • Provide structure and routine
    • Educate about finances, slowly and consistently; set up simple accounts
    • Continue monitoring of activities and whereabouts
    • Seek out jobs that are structured/limited stimulation to reduce stress
    • Continue discussions on sexual education
    • Consider guardianship, and other legal consultation