FAS Support Resources: Complete Directory for Families

Comprehensive support is essential for individuals with Fetal Alcohol Syndrome and their families to thrive. This directory provides information about national organizations, local services, government programs, educational resources, and family support networks available to help navigate life with FAS.

Resource directory Updated: August 2024

🆘 Emergency Resources

Crisis Support

SAMHSA National Helpline: 1-800-662-4357 (24/7 treatment referral service)

Suicide Prevention

988 Suicide & Crisis Lifeline: 988 (24/7 crisis support)

Domestic Violence

National Domestic Violence Hotline: 1-800-799-7233

Quick Navigation

National Organizations and Support Networks

Several national organizations provide comprehensive support, resources, and advocacy for individuals with FAS and their families.

Primary FASD Organizations

FASD United (formerly NOFAS)

Website: fasdunited.org

Mission: Leading voice in prevention, education, and support for individuals with FASD and their families

Services:

  • Educational materials and resources
  • Family support and connections
  • Professional training programs
  • Advocacy and policy initiatives
  • Annual conference and events

National Organization on Fetal Alcohol Syndrome (NOFAS)

Website: nofas.org

Mission: Dedicated to eliminating birth defects caused by alcohol consumption during pregnancy

Services:

  • Prevention education programs
  • Resource development and distribution
  • Professional education and training
  • Research and policy advocacy
  • Community outreach programs

FASD Network of Southern California

Website: fasdnetwork.org

Mission: Supporting families affected by FASD through education and advocacy

Services:

  • Family support groups
  • Educational workshops and seminars
  • Resource libraries
  • Advocacy training
  • Professional development programs

Research and Medical Organizations

University of Washington FASD Diagnostic & Prevention Network

Website: depts.washington.edu/fasdpn

Focus: Research, diagnosis, and prevention of FASD

Services:

  • Diagnostic services and training
  • Research programs
  • Educational materials
  • Professional training resources

Kennedy Krieger Institute FASD Program

Website: kennedykrieger.org

Focus: Clinical services and research for FASD

Services:

  • Comprehensive FASD evaluations
  • Treatment and intervention services
  • Family support and education
  • Research initiatives

International Organizations

FASD Canada National

Website: fasdcanada.ca

Focus: Canadian national FASD organization

Services:

  • National advocacy and policy work
  • Resource development
  • Training and education programs
  • Research coordination

FASD Australia

Website: fasdaustralia.org.au

Focus: Australian FASD support and advocacy

Services:

  • Family support services
  • Professional training
  • Public awareness campaigns
  • Research and policy advocacy

Government Resources and Programs

Various federal, state, and local government programs provide support services, financial assistance, and resources for individuals with disabilities and their families.

Federal Government Resources

Centers for Disease Control and Prevention (CDC)

Website: cdc.gov/fasd

Resources:

  • Educational materials and fact sheets
  • Prevention guidelines and recommendations
  • Research findings and data
  • Healthcare provider resources

National Institute on Alcohol Abuse and Alcoholism (NIAAA)

Website: niaaa.nih.gov

Resources:

  • Research funding and findings
  • Educational materials on alcohol and pregnancy
  • Treatment resources and referrals
  • Professional training materials

Substance Abuse and Mental Health Services Administration (SAMHSA)

Website: samhsa.gov

Helpline: 1-800-662-4357

Resources:

  • Treatment locator services
  • Crisis support and intervention
  • Educational and prevention materials
  • Funding for community programs

Social Security Administration Programs

Supplemental Security Income (SSI)

Website: ssa.gov/ssi

Eligibility: Low-income individuals with disabilities

Benefits:

  • Monthly cash payments
  • Medicaid health insurance
  • SNAP (food stamp) eligibility
  • Housing assistance eligibility

Social Security Disability Insurance (SSDI)

Website: ssa.gov/disability

Eligibility: Individuals with sufficient work history who become disabled

Benefits:

  • Monthly disability payments
  • Medicare health insurance (after 24 months)
  • Family member benefits in some cases

Childhood Disability Benefits

Website: ssa.gov/benefits/disability/child.html

Eligibility: Children under 18 with qualifying disabilities

Benefits:

  • SSI benefits for low-income families
  • Disabled adult child benefits
  • Automatic Medicaid eligibility

Department of Education Resources

Office of Special Education Programs (OSEP)

Website: ed.gov/about/offices/list/osers/osep

Programs:

  • Individuals with Disabilities Education Act (IDEA)
  • Early intervention services (0-3 years)
  • Special education services (3-21 years)
  • Transition services to adulthood

Parent Information Centers

Website: parentcenterhub.org

Services:

  • Information about special education rights
  • Training for parents and families
  • Advocacy support and guidance
  • Resources in multiple languages

State and Local Government Services

Developmental Disabilities Services

  • State DD agencies: Each state has a developmental disabilities agency
  • Case management: Coordination of services and supports
  • Residential services: Group homes and supported living
  • Day programs: Structured daytime activities and support

Vocational Rehabilitation

  • State VR agencies: Employment support and training
  • Job placement services: Help finding appropriate employment
  • Skills training: Vocational skills development
  • Supported employment: Ongoing employment support

Healthcare Services and Medical Support

Specialized healthcare services are essential for individuals with FAS to address their complex medical, developmental, and behavioral needs.

Specialized Medical Centers

University-Based FASD Programs

Services:

  • Comprehensive FASD diagnostic evaluations
  • Multidisciplinary treatment planning
  • Research participation opportunities
  • Training for healthcare professionals

Notable Centers:

  • University of Washington (Seattle, WA)
  • Kennedy Krieger Institute (Baltimore, MD)
  • Children's Hospital Colorado (Aurora, CO)
  • University of Minnesota (Minneapolis, MN)

Children's Hospital FASD Programs

Services:

  • Pediatric FASD diagnosis and treatment
  • Behavioral and mental health services
  • Family support and education
  • Coordination with schools and community services

How to Find:

  • Contact local children's hospitals
  • Ask about developmental pediatrics programs
  • Inquire about FASD-specific services

Primary Healthcare Support

FASD-Informed Primary Care

  • Medical home approach: Coordinated, comprehensive care
  • Regular monitoring: Ongoing assessment of health and development
  • Preventive care: Age-appropriate screenings and immunizations
  • Care coordination: Links to specialists and services

Specialty Healthcare Services

  • Neurology: Management of seizures and neurological issues
  • Psychiatry: Mental health and behavioral support
  • Cardiology: Heart defects sometimes associated with FAS
  • Ophthalmology: Vision problems and eye health

Therapeutic Services

Speech-Language Therapy

Focus Areas:

  • Language development and communication skills
  • Social communication and pragmatic language
  • Swallowing and feeding issues
  • Alternative communication methods

Occupational Therapy

Focus Areas:

  • Fine motor skills and handwriting
  • Sensory processing and integration
  • Daily living skills and self-care
  • Adaptive equipment and modifications

Physical Therapy

Focus Areas:

  • Gross motor skills and coordination
  • Balance and postural control
  • Mobility and movement patterns
  • Exercise and fitness programs

Mental Health Services

Services Include:

  • Individual and family counseling
  • Behavioral intervention and support
  • Trauma-informed care
  • Medication management when appropriate

Healthcare Financing and Insurance

Medicaid Programs

  • Regular Medicaid: Healthcare coverage for low-income individuals
  • EPSDT services: Early and periodic screening for children
  • Medicaid waivers: Home and community-based services
  • Katie Beckett waivers: Coverage based on child's income, not family income

Private Insurance Support

  • Insurance advocacy: Help navigating insurance coverage
  • Appeals process: Support for denied claims
  • Coverage coordination: Coordinating multiple insurance sources
  • Financial counseling: Help understanding insurance benefits

Educational Support and Services

Educational support is crucial for individuals with FAS to reach their academic potential and develop life skills. Various programs and services are available from early childhood through adult education.

Early Childhood Education (0-5 years)

Early Intervention Services (0-3 years)

Legal Basis: Part C of IDEA (Individuals with Disabilities Education Act)

Services Include:

  • Developmental assessments and evaluations
  • Individualized Family Service Plans (IFSP)
  • Therapy services (speech, occupational, physical)
  • Family support and training
  • Case management and service coordination

Preschool Special Education (3-5 years)

Legal Basis: Part B of IDEA

Services Include:

  • Special education preschool programs
  • Individualized Education Programs (IEP)
  • Inclusive preschool settings
  • Related services (therapy, counseling)
  • Transition planning to elementary school

Head Start and Early Head Start

Website: acf.hhs.gov/ohs

Services:

  • Comprehensive early childhood programs
  • Services for children with disabilities
  • Family support and engagement
  • Health and nutrition services

School-Age Education (K-12)

Special Education Services

Legal Framework: IDEA Part B

Key Components:

  • Free Appropriate Public Education (FAPE): Right to appropriate education
  • Least Restrictive Environment (LRE): Education with typical peers when possible
  • Individualized Education Program (IEP): Customized education plan
  • Related Services: Support services needed for education

Section 504 Accommodations

Legal Basis: Section 504 of Rehabilitation Act

Provides:

  • Accommodations and modifications
  • Access to general education curriculum
  • Support for students who don't qualify for special education
  • Procedural safeguards for families

Common Educational Strategies for FAS

Effective Approaches:

  • Structured environment: Clear routines and expectations
  • Visual supports: Pictures, charts, and visual schedules
  • Reduced distractions: Quiet, organized learning spaces
  • Shorter assignments: Breaking work into smaller parts
  • Repetition and practice: Multiple opportunities to learn

Transition and Adult Education

Transition Services (Ages 14-21)

Focus Areas:

  • Post-secondary education planning
  • Employment preparation and training
  • Independent living skills development
  • Community integration and participation

Adult Education Programs

Services Include:

  • Adult basic education and GED programs
  • Vocational and technical training
  • Supported post-secondary education
  • Continuing education and skill development

Educational Advocacy and Support

Parent Training and Information Centers

Website: parentcenterhub.org

Services:

  • Information about special education rights
  • Training workshops for parents
  • Individual advocacy support
  • Resources in multiple languages

Wrightslaw

Website: wrightslaw.com

Resources:

  • Information about special education law
  • Training materials and resources
  • Advocacy guidance and strategies
  • Legal information and updates

Financial Assistance and Support Programs

Raising a child with FAS or supporting an adult with the condition can be financially challenging. Various programs provide financial assistance and support to help families meet their needs.

Government Benefit Programs

Supplemental Nutrition Assistance Program (SNAP)

Website: fns.usda.gov/snap

Provides: Monthly benefits for food purchases

Eligibility: Based on income and household size

Special Considerations: Individuals receiving SSI automatically qualify

Women, Infants, and Children (WIC)

Website: fns.usda.gov/wic

Provides: Nutrition assistance for pregnant women, infants, and young children

Services: Food benefits, nutrition education, health referrals

Eligibility: Income-based, automatic for some benefit recipients

Low Income Home Energy Assistance Program (LIHEAP)

Website: acf.hhs.gov/ocs/programs/liheap

Provides: Assistance with heating and cooling costs

Services: Bill payment assistance, energy crisis intervention

Application: Through state and local agencies

Housing Assistance Programs

Section 8 Housing Choice Vouchers

Website: hud.gov/topics/housing_choice_voucher_program_section_8

Provides: Rental assistance vouchers for private housing

Benefits: Pay about 30% of income toward rent

Application: Through local public housing authorities

Public Housing

Provides: Low-cost rental housing owned by housing authorities

Benefits: Below-market rent based on income

Accessibility: Units available for people with disabilities

Supportive Housing Programs

Focus: Housing with support services for people with disabilities

Services: Case management, life skills training, transportation

Types: Group homes, supported living, independent housing with services

Transportation Assistance

Paratransit Services

Legal Basis: Americans with Disabilities Act (ADA)

Provides: Door-to-door transportation for people with disabilities

Eligibility: Inability to use regular public transportation

Application: Through local transit authorities

Medical Transportation

Medicaid Transportation: Transportation to medical appointments

Volunteer Programs: Community volunteer driver programs

Specialized Services: Transportation for people with disabilities

Financial Support for Specific Needs

Medical and Therapy Expenses

  • Medicaid coverage: Comprehensive healthcare coverage
  • Private insurance advocacy: Help maximizing insurance benefits
  • Charitable organizations: Medical assistance programs
  • Hospital financial assistance: Programs for low-income families

Educational and Therapeutic Equipment

  • Assistive technology loans: Equipment lending programs
  • Educational grants: Funding for educational materials and equipment
  • Therapy equipment: Programs providing therapy equipment
  • Technology access: Programs providing computers and internet access

Respite Care Funding

  • State respite programs: Funding for temporary care
  • Medicaid waivers: Home and community-based service waivers
  • Nonprofit programs: Charitable respite care funding
  • Religious organizations: Faith-based respite support

Tax Benefits and Credits

Child and Dependent Care Credit

Benefit: Tax credit for childcare expenses

Eligibility: Working parents with children under 13 or disabled dependents

Amount: Up to $3,000 for one dependent, $6,000 for two or more

Earned Income Tax Credit (EITC)

Benefit: Refundable tax credit for low-to-moderate income working families

Amount: Varies based on income and number of children

Special Rules: Additional benefits for families with disabled children

Medical Expense Deduction

Benefit: Deduction for medical expenses exceeding 7.5% of income

Includes: Medical care, therapy, special education, adaptive equipment

Documentation: Keep detailed records of all medical expenses

Family Support Services and Networks

Strong support networks are essential for families affected by FAS. Various services and programs provide emotional support, practical assistance, and connections with other families.

Support Groups and Networks

Parent Support Groups

  • Local FASD support groups: In-person meetings in many communities
  • Online support communities: Virtual support groups and forums
  • Hospital-based groups: Support groups at children's hospitals
  • Faith-based support: Support groups in religious communities

Sibling Support

  • Sibshops: Support and education programs for siblings
  • Sibling support groups: Groups specifically for brothers and sisters
  • Online sibling communities: Virtual support for siblings
  • Family therapy: Counseling that includes sibling needs

Grandparent and Extended Family Support

  • Kinship care support: Support for relatives raising children
  • Grandparent support groups: Groups for grandparents raising grandchildren
  • Extended family education: Training for extended family members
  • Respite for kinship caregivers: Temporary care services

Family Counseling and Mental Health Services

Family Therapy

Focus: Improving family communication and relationships

Approaches: Systemic therapy, behavioral interventions

Benefits: Better family functioning, reduced stress

Providers: Licensed family therapists, social workers

Parent Counseling and Support

Focus: Supporting parents' emotional wellbeing

Issues Addressed: Grief, stress, depression, anxiety

Approaches: Individual counseling, group therapy

Specialized Services: Trauma-informed care for parents

Marriage and Relationship Counseling

Focus: Strengthening couple relationships

Common Issues: Stress, communication, disagreements about care

Benefits: Stronger partnerships, better co-parenting

Access: Through mental health centers, private practice

Respite Care Services

In-Home Respite

Service: Trained caregivers provide care in the family home

Duration: Few hours to overnight care

Benefits: Child remains in familiar environment

Funding: Medicaid waivers, private pay, grants

Out-of-Home Respite

Service: Care provided in specialized facilities or foster homes

Options: Day programs, overnight care, weekend programs

Benefits: Specialized activities, social interaction

Providers: Disability service agencies, specialized facilities

Emergency Respite

Service: Crisis respite care when families face emergencies

Situations: Medical emergencies, family crises

Access: Through crisis response systems

Duration: Short-term, immediate response

Educational and Training Programs for Families

Parent Training and Education

Topics:

  • Understanding FAS and its effects
  • Behavior management strategies
  • Communication techniques
  • Advocacy skills and rights
  • Accessing services and resources

Family Conferences and Workshops

Events:

  • Annual FASD conferences
  • Local workshops and seminars
  • Online webinar series
  • Family retreats and camps

Peer Support and Mentoring

Parent-to-Parent Programs

Service: Experienced parents mentor new families

Benefits: Emotional support, practical advice, resource sharing

Matching: Parents matched based on similar experiences

Format: Phone support, in-person meetings, online connections

Family Navigator Programs

Service: Trained family members help navigate services

Support: System navigation, advocacy, resource connection

Expertise: Personal experience combined with training

Access: Through disability organizations and healthcare systems

Finding Local Resources and Services

While national resources provide important information and support, accessing local services is essential for day-to-day support and intervention.

Information and Referral Services

211 Information Services

Phone: Dial 2-1-1

Website: 211.org

Services:

  • 24/7 information and referral helpline
  • Database of local resources and services
  • Assistance in multiple languages
  • Crisis support and emergency assistance

United Way Agencies

Website: unitedway.org

Services:

  • Local resource directories
  • Information about community services
  • Volunteer opportunities
  • Community funding and grants

State and Local Information Systems

Resources:

  • State disability services websites
  • County social services departments
  • Local Area Agencies on Aging (may serve all disabilities)
  • Regional Centers (in some states)

Healthcare Provider Networks

Finding FASD-Informed Providers

  • Children's hospitals: Developmental pediatrics programs
  • University medical centers: Often have specialized programs
  • Rehabilitation hospitals: Comprehensive evaluation services
  • Community health centers: Primary care with specialty referrals

Provider Referral Sources

  • State medical associations
  • Pediatric specialty societies
  • Disability organizations
  • Other families and support groups

Educational Service Locators

Early Intervention Services

  • State early intervention agencies: Each state has a lead agency
  • Regional service coordinators: Local coordinators for services
  • Evaluation centers: Centers providing developmental evaluations
  • Therapy providers: Local speech, occupational, and physical therapists

School District Services

  • Special education departments: District special education services
  • Child Find programs: Programs to identify children needing services
  • Transition services: Post-secondary planning and support
  • Related service providers: Therapy and support services in schools

Community Support Networks

Faith-Based Organizations

  • Religious congregations with disability ministries
  • Faith-based social service agencies
  • Religious support groups and programs
  • Chaplaincy and spiritual care services

Community Organizations

  • Service clubs (Rotary, Lions, etc.)
  • Women's organizations and clubs
  • Ethnic and cultural community organizations
  • Neighborhood associations and groups

Recreation and Social Programs

  • Adaptive recreation programs
  • Special Olympics and similar sports programs
  • Community center programs
  • Summer camps and day programs

Building Local Support Networks

Starting Support Groups

Steps to Consider:

  • Identify other interested families
  • Find meeting locations (libraries, community centers)
  • Connect with existing organizations for support
  • Develop meeting structure and goals
  • Promote the group through healthcare providers and schools

Advocacy for Services

Advocacy Strategies:

  • Identify service gaps in the community
  • Build coalitions with other disability organizations
  • Engage with local government and service providers
  • Advocate for funding and policy changes
  • Raise awareness through community education

Digital and Online Resources

Digital resources provide accessible information, support, and connections for families affected by FAS, especially those in areas with limited local services.

Educational Websites and Platforms

Comprehensive FASD Information Sites

  • CDC FASD Information: cdc.gov/fasd
  • SAMHSA FASD Resources: samhsa.gov/fasd
  • FASD United: fasdunited.org
  • University of Washington FASD PN: depts.washington.edu/fasdpn

Educational and Training Platforms

  • FASD Online Learning: Interactive training modules
  • Webinar Archives: Recorded educational presentations
  • Virtual Conferences: Online conference presentations
  • Professional Training Sites: Continuing education for providers

Online Support Communities

Social Media Support Groups

  • Facebook Groups: Private groups for families affected by FASD
  • Reddit Communities: Discussion forums and support
  • Twitter Chats: Regular Twitter conversations about FASD
  • Instagram Communities: Visual sharing and support

Specialized Forums and Platforms

  • FASD-specific forums: Dedicated discussion platforms
  • Parent networking sites: Platforms for parent connections
  • Professional networks: Forums for healthcare providers
  • Peer support platforms: Sites connecting individuals with similar experiences

Mobile Applications and Tools

General Support Apps

  • Care coordination apps: Managing appointments and services
  • Medication reminders: Apps for medication management
  • Behavior tracking apps: Monitoring behaviors and patterns
  • Communication apps: Assistive communication tools

Educational and Therapeutic Apps

  • Learning apps: Educational games and activities
  • Social skills apps: Apps teaching social interaction
  • Life skills apps: Apps for daily living skills
  • Sensory regulation apps: Tools for sensory support

Virtual Services and Telehealth

Telehealth Medical Services

  • Remote consultations: Video consultations with specialists
  • Therapy services: Online speech, occupational, and counseling services
  • Assessment tools: Remote evaluation and assessment
  • Follow-up care: Ongoing monitoring and support

Virtual Educational Services

  • Online tutoring: Academic support and tutoring
  • Virtual IEP meetings: Remote participation in school meetings
  • Distance learning support: Support for online schooling
  • Parent training: Online parent education programs

Digital Resource Libraries

Document and Resource Libraries

  • Educational materials: Downloadable fact sheets and guides
  • Forms and templates: IEP templates, medical forms
  • Research databases: Access to current research
  • Video libraries: Educational and training videos

Interactive Resources

  • Assessment tools: Online screening and assessment
  • Planning tools: Service planning and goal-setting
  • Progress tracking: Tools for monitoring development
  • Resource finders: Interactive service locators

Crisis and Emergency Support

Families affected by FAS may face various crisis situations requiring immediate support and intervention. Knowing where to turn during emergencies is crucial.

Mental Health Crisis Resources

National Crisis Hotlines

988 Suicide & Crisis Lifeline: 988

  • 24/7 crisis support and suicide prevention
  • Chat and text options available
  • Connects to local crisis centers
  • Specialized support for different populations

Crisis Text Line

Text HOME to 741741

  • 24/7 crisis support via text
  • Confidential and free service
  • Trained crisis counselors
  • Immediate crisis intervention

Local Crisis Services

How to Find:

  • Contact local community mental health centers
  • Call 211 for local crisis resources
  • Contact hospital emergency departments
  • Connect through local law enforcement (crisis intervention teams)

Family Crisis Support

Domestic Violence Resources

  • National Domestic Violence Hotline: 1-800-799-7233
  • Text option: Text START to 88788
  • Local domestic violence shelters
  • Safety planning resources

Child Abuse and Neglect

  • Childhelp National Child Abuse Hotline: 1-800-422-4453
  • Local child protective services
  • Mandated reporter resources
  • Prevention and support services

Family Support Crisis Services

  • Emergency respite care
  • Crisis intervention services
  • Emergency financial assistance
  • Temporary housing assistance

Medical Emergencies

Emergency Medical Care

  • Emergency rooms: 24/7 emergency medical care
  • Urgent care centers: Non-emergency urgent medical needs
  • Pediatric emergency departments: Specialized emergency care for children
  • Poison control: 1-800-222-1222

Medical Information for Emergencies

  • Medical ID cards: Carrying FAS diagnosis information
  • Medication lists: Current medications and allergies
  • Emergency contacts: Healthcare providers and family
  • Medical history summaries: Concise medical history

Educational and Legal Crisis Support

Educational Crisis

  • School district crisis intervention: Support for school-related crises
  • Educational advocates: Emergency educational advocacy
  • Due process support: Help with educational disputes
  • Interim educational services: Services during disputes

Legal Crisis

  • Emergency legal aid: Crisis legal representation
  • Protection and advocacy agencies: Crisis rights protection
  • Emergency guardianship: Temporary legal protection
  • Crisis intervention courts: Specialized court programs

Financial Emergency Assistance

Emergency Financial Aid

  • Salvation Army: Emergency financial assistance
  • United Way Emergency Services: Crisis financial support
  • Local churches and faith organizations: Emergency assistance funds
  • Community action agencies: Crisis assistance programs

Utility and Housing Crisis

  • LIHEAP Emergency Services: Energy crisis assistance
  • Emergency rental assistance: Housing stability programs
  • Food banks and pantries: Emergency food assistance
  • Homeless services: Emergency shelter and housing

Crisis Preparation

Creating a Crisis Plan:

  • Identify potential crisis situations
  • List emergency contacts and resources
  • Prepare important documents and information
  • Practice crisis procedures with family
  • Update plans regularly

Using This Resource Directory Effectively

🔍 Getting Started

  • Start with national organizations for general information
  • Use 211 to find local services in your area
  • Connect with other families through support groups
  • Build relationships with key service providers

📋 Staying Organized

  • Keep a resource binder with important contacts
  • Maintain updated lists of services and providers
  • Document what services work best for your family
  • Share resources with other families in your network

🤝 Building Support

  • Join multiple support networks for different needs
  • Participate in advocacy efforts
  • Share your expertise with new families
  • Stay connected with your support community

🔄 Keeping Current

  • Regularly update your resource information
  • Stay informed about new programs and services
  • Monitor changes in eligibility and funding
  • Reassess your needs as your family grows and changes
Resource Disclaimer: This directory provides general information about resources and services. Availability, eligibility requirements, and contact information may change over time. Always verify current information directly with service providers. The inclusion of any organization or resource does not constitute an endorsement. Families should evaluate all resources to determine appropriateness for their specific needs and circumstances.

Related Resources