Resources for Families Living with FASD: What's Out There? Kathy Mitchell, NOFAS Vice-President Andy Kachor, NOFAS Communications Director
Objectives Participants will: 1. Learn about the existing resources available for families living with FASD. 2. Get information on FASD diagnosis and what to do next. 3. Learn how to access resources. 4. Learn about free and low-cost materials and resources.
About NOFAS Mission: NOFAS prevents FASD, raises awareness about the risk of prenatal alcohol exposure, and supports individuals, families, and communities living with FASD. Vision: The vision of NOFAS is a global community free of alcohol-exposed pregnancies and a society supportive of individuals already living with FASD.
Introduction • This webinar will review resources that are currently available. • Although there are many materials available, unfortunately, they may not meet every need.
Introduction • It is easier to find information and materials than to find a local FASD-informed service provider. • Therefore, families need to become experts in locating FASD-informed providers.
NOFAS Resource Directory NOFAS has a directory of resources listed by state.
NOFAS Resource Directory Categories: Diagnostic Services • Treatment • Advocacy/Support • Support Groups/Family Contacts • Alcoholism/Addiction •
NOFAS Resource Directory New NOFAS Resource Directory Search Form
Parent Support Groups Many parent support groups can be found through the NOFAS Resource Directory or by contacting members of the NOFAS Affiliate Network.
NOFAS Affiliate Resources
NOFAS Affiliate Resources NOFAS has over 40 affiliates that provide additional resources to families living in their geographic area.
Consideration Dealing with uninformed providers can be frustrating. Search the NOFAS Resource Directory or contact NOFAS affiliates to locate FASD-informed service providers and professionals in your area. Families often need to inform the provider about FASD.
Getting an FASD Diagnosis • A formal diagnosis is a starting point for meeting FASD-specific needs. • Find a diagnostician. • Use the NOFAS Resource Directory.
Guidelines for Referral and Diagnosis Fetal Alcohol Syndrome: Guidelines for Referral and Diagnosis Considerations for a Referral for • an FAS Diagnostic Evaluation Services Appropriate for • Affected Individuals and their Families
DSM and ICD Coding FASD is included in the DSM-5 and ICD-10-CM. These codes are needed to get reimbursement for medical services.
Intervention Brochure CDC Intervention Brochure: 4 Programs that work Copies are available from NOFAS.
8 Magic Keys 8 Magic Keys: Strategies for Students with FASD DVD available from NOFAS.
Consideration Don’t limit your search to only resources that are specific to FASD by name. Look into: • Disability rights groups • Special education advocacy • General housing assistance • General employment assistance
Sharing Personal Stories Get to Know Me: Interview Series To eliminate the stigma of FASD and to feature individuals living with an FASD and succeeding. Interviews include a wide range of ages and backgrounds
NOFAS Videos Video Interviews with individuals with FASD, as well as FASD experts from a range of disciplines. YouTube channel: Alcohol-free Pregnancy
NOFAS Videos DVDs available from NOFAS
Legal Issues The NOFAS website includes a dedicated criminal justice webpage : • Information • Resources • Videos • Webinars
Legal Issues • American Bar Association (FASD Resolution) • FASD Experts (Forensic) • ACLU • National Disability • Rights Network
Consideration • Look into support for other developmental disabilities such as Attention Deficit Hyperactivity Disorder (ADHD) services. • Treatment not specifically labeled for FASD may benefit the individual and indirectly help their FASD- related issues.
Resources for Parents The NOFAS website has many resources for parents and caregivers: www.nofas.org/parents. The website is constantly being updated and includes many resources, such as: • Materials • Guidebooks • General Strategies • Resources for Children and Adults • Programs
Resources for Parents Resources are organized by category. These listings are continually being updated.
Curricula for Teaching Students Triumph: Through the Challenges of Fetal Alcohol Syndrome Teacher • and Parent Workbook The NOFAS Ohio Affiliate, Double ARC has developed and tested separate training curricula for parents and teachers. Fetal Alcohol Spectrum Disorders Educational Strategies Handbook • The Fetal Alcohol Spectrum Disorders (FASD) Education Strategies Handbook is a product of the National Organization on Fetal Alcohol Syndrome-South Dakota (NOFAS-SD) at the Center for Disabilities. All About Me Booklet • This booklet was produced by the Bluegrass Prevention Center through the Sycamore Project: Kentucky’s Prevention Enhancement Site for Fetal Alcohol Spectrum Disorders.
Teaching Math The Math and Interactive Learning Experience Program (MILE) • Created to support, educate, and empower caregivers and teachers to work with children to improve behavior and arousal to achieve learning readiness and math skills. For more information on how to receive training to become a MILE instructor or more information about this program, email Dr. Taddeo at etaddeo@emory.edu or call 404-712-9800. Practical Money Skills for Life • Approved by the Council for Exceptional Children, these lesson plans enable students with learning disabilities to gain important personal finance skills. Math is Fun • Interactive math site for teaching essential math skills.
Improving Attention Attention building games for kids with special needs • Use these cognitive exercises to help your child build concentration and improve their symptoms. Fourteen 15-Minute Activities • From storytelling to problem solving, these activities can be used to help fill in the dreaded gaps that are experienced between lessons or activities.
Improving Social Skills The Families Moving Forward (FMF) Program • Helps children with FASD, their families, and the professionals who care for them. It is a positive parenting program designed for children from ages 3 to 13 (approximately). Good Buddies • The social deficits that are often involved with FASDs can have a significant negative impact on children who are not able to make or keep friends. Good Buddies was developed to give children with an FASD social skills training to help make this process easier. You can order the Good Buddies Trainer and Therapist Workbooks by contacting moconnor@mednet.ucla.edu or 310-206-6528. Improving Social Behavior • Some children and adults with special needs struggle in the area of social interactions. This long list of activities can help teach children to successful with social exchanges.
Improving Fine and Gross Motor Skills Monster Punching Bag Encouraging Gross Motor Skills • Create a monster punching bag from things you have in your home to encourage your child to work on their gross motor skills. Occupational Therapy Website - Pick skill you want to work on and • the materials you have, and site will recommend an activity This activity works on pincer grasp by sorting different colored ribbons using tweezers. Activities to Promote Fine Motor Skills • Learn about materials that can promote fine motor skills along with some activities to do with them.
Emotional Regulation PACT - Parents and Children Together: • The Parents and Children Together (PACT) intervention was designed to help children with FASDs and their parents team strategies to cope with deficits in self-regulation and executive functioning. For more information about PACT, visit www.childstudy.org or email irachasnoff@gmail.com. Strategies to Help Kids Calm Down • http://www.encourageplay.com/blog/10-strategies-to-help-kids- calm-down The Incredible 5 Point Scale • This unique hands-on activity helps students who are highly anxious cope with their stress by systematizing social and emotional information.
Addressing Sensory Issues Fall sensory activities to do with your child with special needs • Learn about sensory activities with the leaves including raking leaves, jumping in the pile, playing hide and seek, and making a leaf race. Chores and Heavy Work Activities for Kids as a Solution to Aggression • Developed by Pediatric Occupational Therapists
Family and Teaching Activities for Children with FASD Activities When Kids Need a Break • When your child needs a break from school work or long activities, tips on how to keep them energized and focused! Emotions and Animals Dice Game • Great game to teach young children about emotions through a creative charade-like dice game. 10 Restaurant Waiting Games for Kids • Avoid melt downs, whining, and crying with these very easy games you can make and play while waiting at restaurants!
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