Resource Directory

Resources for Individuals and Families with Disabilities

Although FASD is a common developmental disability many professionals remain unfamiliar with the disorders, and diagnostic, intervention, and other clinical services can be difficult to locate. As a result, if you are new to FASD or are unable to find essential services, contact the FASD United Family Navigator to discuss your circumstance and needs.

Contact the Family Navigator

Disability Services is a federal resource with a broad range of resources for people with disabilities including benefits and insurance, caregiver support, financial assistant and support services, government and local disability programs, jobs and education, veterans disability benefits, and legal disability rights.

National Resources

Centers for Disease Control and Prevention (CDC)

CDC works with partners across the country to address alcohol and other substance use during pregnancy and FASDs. Their scientific findings help inform evidence-based care and resources.

Collaborative Initiative on Fetal Alcohol Spectrum Disorders (CIFASD)

Informs and develops effective interventions and treatment approaches through multidisciplinary research involving basic, behavioral, and clinical investigators and projects.

National Institute on Alcohol Abuse and Alcoholism (NIAAA)

Generates and disseminates knowledge about the adverse effects of alcohol on health and well-being, and applies that knowledge to improve diagnosis, prevention, and treatment of alcohol-related problems across the lifespan.

Substance Abuse and Mental Health Services Administration (SAMHSA)

Agency within the U.S. Department of Health and Human Services that leads public health efforts to advance the behavioral health of the nation.

The Arc

Offers advocacy, legal support, housing assistance, and individualized planning for people with intellectual and developmental disabilities, including those with FASD.

National Council on Independent Living (NCIL)

Supports the Independent Living Movement through local Centers for Independent Living (CILs); promotes self-determination, peer support, and disability rights.

Association of University Centers on Disabilities (AUCD)

Supports LEND programs and research hubs focused on developmental disabilities. Offers resources for training, advocacy, and policy development related to neurodevelopmental conditions like FASD.

National Disability Rights Network (NDRN)

Coordinates the Protection & Advocacy (P&A) system in all U.S. states/territories, which provides legal support, civil rights protection, and services to individuals with disabilities.

Family Voices

Focuses on family-centered care and systems navigation for families of children and youth with special health care needs, including neurodevelopmental and invisible disabilities like FASD.

The Arc’s National Center on Criminal Justice and Disability (NCCJD)

Specifically supports individuals with I/DD, including FASD, within the criminal justice system. Excellent for justice-focused support.

Parent to Parent USA

Peer support for parents/caregivers of individuals with any disability.

Disability Rights Education and Defense Fund (DREDF)

Legal and civil rights advocacy for all disabilities.

National Center for Learning Disabilities (NCLD)

While focused on learning disabilities, often overlaps with FASD advocacy.

TASH (Equity, Opportunity, and Inclusion for People with Disabilities)

Advocates for inclusion and human rights for people with significant disabilities. Supports inclusive education, employment, and community living.

National Association of Councils on Developmental Disabilities (NACDD)

Supports DD Councils in every U.S. state and territory that work to ensure individuals with developmental disabilities can live independently and inclusively.

The Collaborative on Health Reform and Independent Living (CHRIL)

Engages in research, policy, and advocacy focused on healthcare access for individuals with disabilities, which includes those with FASD.

FASD Collaborative

FASD Collaborative Project is focused on supporting the creation of fully inclusive communities that address the needs of all individuals who are neurodiverse, which includes extremely underserved populations like the FASD community.

Kids’ Waivers

Provides a comprehensive resource of all Medicaid waivers and programs for children, including 1915(c) HCBS waivers, 1115 demonstration waivers, TEFRA/Katie Beckett programs, and state-based programs.

Learning Disabilities Association of America

Provides parental support services, educates policymakers on legislation regarding learning disabilities, works with school programs that address learning disabilities, and publishes materials for adults with learning disabilities about workplace issues, adult literacy, parenting, and assistive technology.

Job Accommodation Network (JAN)

The Job Accommodation Network works with both potential job seekers and employers. They help people with disabilities market their skills and assist employers in understanding the requirements of the Americans with Disabilities Act (ADA).

American Civil Liberties Union (ACLU)

The ACLU works to defend all Americans’ individual rights protected in the Constitution. They offer legal assistance to members of the population who may not always receive the equal rights they deserve, including people with disabilities.

National Center on Accessible Instructional Materials

This site serves as a resource to educate parents and teachers on accessible educational materials (AEM) for children who are unable to use regular printed text.

SourceAmerica

Helps people with disabilities find jobs by networking with community nonprofit agencies to fulfill contracting needs for the Federal Government. This organization also offers training to people with disabilities who are trying to find employment and helps them find the best work environment for their needs.

Center for Parent Information and Resources (CPIR):

Here, you can find information about local Parent Training Information Centers and Community Parent Resource Centers that provide different materials to families to help educate them about raising children with disabilities.

Easter Seals

This organization has headquarters in every state and provides a wide variety of services in education, outreach, and advocacy. They provide people of all ages with the means to adapt to the challenges that their disabilities present.

National Disability Navigator Resource Collaborative (NDNRC):

The NDNRC informs people with disabilities about their health insurance options through the Affordable Care Act, helping them enroll in the best possible insurance available to them through the Marketplace.

CDC National Center on Birth Defects and Developmental Disabilities (NCBDDD)

NCBDDD strives to advance the health and well-being of the nation’s most vulnerable populations. FASD United participates in this network.

Other Resources

FASD United Affiliate Network

FASD United collaborates with independent affiliates across the United States. You can find one close to your location.

FASD Special Education Survey

Focuses on educational experiences for students with FASDs. Survey done bi-yearly with results published in the off year.

Language and Stigma Guide

FASD United is proud to present this document as a tool and resource for anyone interested in expanding their awareness of stigmatizing language and understanding of stigma-free messaging related to FASD, Substance Use, and Individuals with Living Experience.

Supporting Success for Adults with FASD

This booklet is a commitment. It is also a vehicle to provide information and basic, practical accommodations that can lead to good lives for those we support who live with FASD, and those we have yet to meet and welcome into our communities.

FASD and Justice

Designed for justice system professionals and others who want to understand more about FASD. They provide background information, case law, legal resources, and strategies for effective intervention.

8 Magic Keys

The 8 Magic Keys are guidelines to developing successful interventions for all learners, including those with FASD. Developed by Deb Evenson and Jan Lutke, the keys are: concrete, consistency, routine, specific, structure, supervision, repitition, simplicity, and relationship.

All About the IEP

The resources listed will help people learn more about IEPs—what the law requires, what information a typical IEP contains, how IEPs are developed, and so on.

Meet Your Student Fillables

Fillable PDF documents to bring to your student with FASD’s teacher. Made for youth and for teens.