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advocacy iconAdvocacy can take many forms.  As parents, we advocate for our child’s medical and therapeutic needs.  As they get older we advocate for their educational, social, recreational, and transition needs. We also teach our children to advocate for themselves as they grow into adulthood to achieve a higher level of independence.  Advocacy is also for the greater good and as parents and consumers we can become active at the legislative level.


More information on advocacy can be found in these resources:


Management Manual for Parents:
English Version 
Spanish Version

CHARGE Accounts: The CHARGE Syndrome Foundation’s Monthly Newsletters 



Webinar: CHARGE Syndrome Webinar on The Cogswell –Macy Act with Mark Richert, Director of Public Policy, AFB

Ask the Experts Webinars



websitesFederally Funded Deaf-Blind Children’s Services

National Center on Deaf-Blindness (NCDB): As a national technical assistance center funded by the federal Department of Education, NCDB works to improve the quality of life for children who are deafblind and their families

State Deafblind Projects: State or region specific projects funded by the federal Department of Education to work with families that have a child with deafblindness and systems that serve children who are deafblind.

Consumer Groups

DeafBlind Citizens in Action (DBCA): Striving toward a better world through independence and empowerment

American Association of the Deaf-Blind (AADB): AADB is a national consumer organization of, by, and for deaf-blind Americans and their supporters.

DeafBlind Legislative Advocacy Groups

Organizations that advocate for the rights of people with deaf-blindness at the Federal level.

National Family Association for Deaf-Blind (NFADB): The largest national network of families focusing on issues surrounding deaf blindness.

National Coalition on Deaf-Blindness: Provides information and advocacy in a collaborative way to policy makers, fiscal agents, educational professionals and community leaders on behalf of children and youth who are deaf-blind, in conjunction and partnership with adults who are deaf-blind, families, and stakeholders.

American Foundation for the Blind (AFB): Removes barriers, creates solutions, and expands possibilities so people with vision loss can achieve their full potential.

Educational Advocacy Groups

Know your education rights. Wrightslaw

State Parent Centers

Center for Parent Information and Resources (CPIR): Parent Centers provide information and training to parents of children with disabilities, birth to 26. Every state has at least one parent center.

PACER Center: Champions for Children with Disabilities

Disability Legislation

United States
Americans with Disabilities Act (ADA)

Individuals with Disabilities Education Act (IDEA)