COMMUNICATION FIRST

COMMUNICATIONFIRST IS THE ONLY NONPROFIT ORGANIZATION LED BY AND DEDICATED TO PROTECTING THE HUMAN AND CIVIL RIGHTS AND ADVANCING THE INTERESTS OF THE ESTIMATED 5 MILLION PEOPLE IN THE UNITED STATES WHO CANNOT RELY ON SPEECH ALONE TO BE HEARD AND UNDERSTOOD DUE TO DISABILITY OR OTHER CONDITION, REGARDLESS OF CAUSE OR AGE OF ONSET. COMMUNICATIONFIRST IS A CROSS-DISABILITY, CROSS-GENERATIONAL, MULTI-RACIAL, AND MULTICULTURAL DISABILITY-LED CIVIL RIGHTS ORGANIZATION. WE PROMOTE SYSTEMIC CHANGE THROUGH PUBLIC ENGAGEMENT AND EDUCATION, POLICY AND PRACTICE REFORM, AND LEGAL ADVOCACY. MEMBERS OF OUR COMMUNITY ARE REGULARLY DENIED THE TOOLS AND SUPPORT WE NEED TO EFFECTIVELY COMMUNICATE; WRONGFULLY ASSESSED AND STIGMATIZED FOR LIFE; DEPRIVED OF AN INCLUSIVE, EQUALLY EFFECTIVE EDUCATION; SEGREGATED AND INSTITUTIONALIZED; ISOLATED AND EXCLUDED FROM EVERYDAY LIFE, INCLUDING THE EVER-MORE-IMPORTANT DIGITAL WORLD; SUBJECTED TO INFERIOR HEALTH CARE; ABUSED AND VICTIMIZED; AND FAR WORSE. RESEARCH AND LIVED EXPERIENCE SUGGEST THAT BLACK, BROWN, MULTILINGUAL, AND OTHER MULTIPLY MARGINALIZED INDIVIDUALS ARE BOTH MORE LIKELY TO NEED AUGMENTATIVE AND ALTERNATIVE COMMUNICATION (AAC) AT SOME POINT IN LIFE AND TO EXPERIENCE HARSH AND COMPOUNDING FORMS OF SOCIETAL OPPRESSION AND DISCRIMINATION AS A RESULT. THE UNWARRANTED ASSUMPTIONS, STEREOTYPES, AND DISCRIMINATION OUR CONSTITUENTS EXPERIENCE OFTEN STEM FROM OUTDATED AND HARD-WIRED POLICIES AND PRACTICES OF FEDERAL, STATE, AND LOCAL GOVERNMENTAL ENTITIES. IT IS THE NORM FOR US TO BE OSTRACIZED AND PERCEIVED AND TREATED AS LESS THAN: AS HAVING LESS INTELLECT, LESS TO SAY, AND NO NEED OR RIGHT TO DO SO ALL, IRONICALLY, BECAUSE OTHERS CANNOT UNDERSTAND US. COMMUNICATIONFIRST IS TRANSFORMING THE NATIONAL CONVERSATION ABOUT THE LEGAL RIGHTS AND LIVED EXPERIENCES OF PEOPLE WHO NEED AND USE AAC TOOLS AND SUPPORTS. WE ARE ENSURING CONVERSATIONS AT THE FEDERAL AND STATE LEVEL AROUND POLICY ISSUES THAT IMPACT US GUARDIANSHIP, ACCESS TO HEALTH CARE, RESTRAINT AND SECLUSION, EDUCATION, ACCESS TO JUSTICE, INSTITUTIONALIZATION, EFFECTIVE COMMUNICATION, AND MORE INCLUDE OUR VOICES AND ADDRESS OUR INTERESTS. WE ARE AMBITIOUS AND UNRELENTING DISABLED ADVOCATES WHO BELIEVE IN RADICAL INCLUSION AND ACCEPTANCE. WE ARE GHTING TO CHANGE HEARTS AND MINDS, AND TO BUILD A WORLD THAT CENTERS JUSTICE, COMMUNITY, DIGNITY, AND HUMANITY. AND WE ARE JUST GETTING STARTED. IN 2024, IN THE AREA OF PUBLIC ENGAGEMENT AND AWARENESS, COMMUNICATIONFIRST CONTINUED TO USE THE POWER OF DIGITAL STORYTELLING TO BEGIN TO SHATTER THE DOMINANT SOCIETAL NARRATIVE ABOUT PEOPLE WITH SPEECH-RELATED DISABILITIES. WE HIRED OUR FIRST COMMUNICATIONS DIRECTOR TO ENABLE US TO EXPAND OUR MESSAGE, REACH, AND IMPACT. WE ARE DEVELOPING THE #VISIBLEAAC IMAGE REPOSITORY TO SHOW THE DIVERSITY OF AAC USERS. WE CREATED A COMPREHENSIVE RESOURCE ABOUT ORGANIZING AND HOSTING ONLINE MEETINGS WITH AAC USERS. WE RELEASED THE LATEST IN THE SEE US, HEAR US FILM SERIES, THIS ONE FEATURING COMMUNICATIONFIRST CO-FOUNDER, TRAILBLAZER, AND ACTIVIST BOB WILLIAMS. WE HOSTED A FREE PUBLIC WEBINAR TO PLATFORM THAT FILM IN OCTOBER 2024 AND FEATURED TWO SURVIVORS OF THE DISTRICT OF COLUMBIA'S FOREST HAVEN INSTITUTION THAT BOB HELPED CLOSE. IN 2024, COMMUNICATIONFIRST'S WORK WAS RECOGNIZED BY THE WHITE HOUSE BY INVITATIONS TO ITS CO-FOUNDERS AND BOARD CHAIR TO PARTICIPATE IN ITS ADA AND DISABILITY PRIDE MONTH CELEBRATION ON THE SOUTH LAWN. COMMUNICATIONFIRST WAS ALSO AWARDED THE ANNUAL NOTHING ABOUT US WITHOUT US AWARD FROM THE AUTISTIC SELF ADVOCACY NETWORK. IN 2024, IN THE AREA OF POLICY AND PRACTICE REFORM, COMMUNICATIONFIRST CONTINUED TO PROMOTE THE USE OF PARTICIPATORY ACTION RESEARCH WITH PEOPLE WHO NEED AND USE AAC. WE COLLABORATED WITH THE REHABILITATION ENGINEERING RESEARCH CENTER (RERC) ON AAC (CURRENTLY HOUSED AT THE PENNSYLVANIA STATE UNIVERSITY) TO ORGANIZE THE FIRST-OF-ITS-KIND FUTURE OF AAC RESEARCH SUMMIT IN ARLINGTON, VIRGINIA, WHERE THE MAJORITY OF THE PRESENTERS WERE AAC USERS. MOST OF THE PRESENTATIONS HAVE SINCE BEEN PUBLISHED IN A SPECIAL ISSUE OF AUGMENTATIVE AND ALTERNATIVE COMMUNICATION, WITH TENS OF THOUSANDS OF DOWNLOADS INTERNATIONALLY. WITH A GRANT FROM THE WITH FOUNDATION, WE ALSO CREATED AND DEBUTED A 17-MINUTE FILM CALLED "13 AAC USERS: PRIORITIES FOR FUTURE RESEARCH." COMING OUT OF THE SUMMIT, COMMUNICATIONFIRST CREATED A NEW MECHANISM TO FACILITATE RESEARCHER CONNECTIONS WITH AAC USERS. TO DATE, OVER 130 AAC USERS HAVE SIGNED UP TO BE CONTACTED ABOUT PROSPECTIVE STUDIES, AND COMMUNICATIONFIRST HAS CIRCULATED 14 OF 19 VETTED RESEARCH OPPORTUNITIES SUBMITTED FOR CONSIDERATION. ALSO IN 2024, WE COLLABORATED WITH OREGON HEALTH & SCIENCE UNIVERSITY TO CREATE THE AAC USER-LED NATIONAL CONSORTIUM TO ADVANCE PEER SUPPORT MODELS FOR AAC USERS. THIS FEDERALLY-FUNDED CONTRACT WAS AWARDED IN JANUARY, AND A DIVERSE 60-MEMBER CONSORTIUM OF AAC USERS, SERVICE PROVIDERS, FAMILY MEMBERS, EDUCATORS, REPRESENTATIVES OF DISABILITY RIGHTS AND SELF-ADVOCACY ORGANIZATIONS, AAC MANUFACTURERS, AND OTHER EXPERTS CONVENED FROM FEBRUARY 2024 TO MARCH 2025. LED AND GUIDED BY A CORE STEERING COMMITTEE OF AAC USERS, THE CONSORTIUM DEVELOPED BEST PRACTICES FOR EFFECTIVE PEER SUPPORT FOR AAC USERS, USING SURVEYS, LITERATURE REVIEWS, AND DISCUSSION GROUPS TO GENERATE CONSENSUS. THIS PROJECT ALSO YIELDED RESULTS FROM THE LARGEST SURVEY CONDUCTED TO DATE REGARDING TYPES OF AAC IN USE, WITH A SAMPLE SIZE OF 135 AAC-USING RESPONDENTS. COMMUNICATIONFIRST CONTINUES TO PRIORITIZE THE POLICY NEED TO COLLECT RELIABLE, ACCURATE, AND COMPREHENSIVE DATA ABOUT OUR COMMUNITY. WE ATTENDED AND PROVIDED COMMENTS DURING A FULL-DAY US CENSUS BUREAU MEETING WITH THE DISABILITY COMMUNITY IN SEPTEMBER 2024 AND HAVE BEEN WORKING TO CONVINCE THE BUREAU AND OTHER STATISTICAL AGENCIES THAT COUNTING PEOPLE WHO NEED AND USE AAC IS A CRITICAL DATA EQUITY ISSUE. POLICYMAKERS CANNOT DESIGN EFFECTIVE POLICIES THAT MEET OUR NEEDS WITHOUT THIS DATA. AS PART OF OUR FIVE-YEAR PARTNERSHIP WITH THE FEDERALLY FUNDED LINK CENTER, COMMUNICATIONFIRST HAS DEVELOPED RESOURCES TO IMPROVE MENTAL HEALTH SERVICES AND SUPPORTS FOR PEOPLE WITH SPEECH-RELATED DISABILITIES AND CO-OCCURRING MENTAL HEALTH CONDITIONS. IN EARLY 2024, WE RELEASED TWO RESOURCES TO SUPPORT CRISIS PLANNING FOR PEOPLE WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES, INCLUDING THOSE WHO USE AAC. IN DECEMBER, WE DEVELOPED AND PUBLISHED TWO VERSIONS OF THE RESOURCE "COMMUNICATING IN TIMES OF STRESS," ONE FOR PROFESSIONALS AND ONE FOR PEOPLE WITH LIVED EXPERIENCE. IT HAS BEEN SHARED WIDELY BY ADVOCACY ORGANIZATIONS AND PROFESSIONALS ALIKE. WE FURTHER COLLABORATED WITH THE LINK CENTER TO DEVELOP RECOMMENDED BEST PRACTICES FOR CRISIS RESPONSE LINES WHEN ENGAGING WITH MEMBERS OF OUR COMMUNITY, AND PRESENTED THEM TO THE LINK CENTER'S 988 POLICY ACADEMY IN AUGUST AND DECEMBER. FINALLY, WE BEGAN DEVELOPING A TOOLKIT ABOUT THE EXISTENCE OF COMPLEX TRAUMA FOR PEOPLE WHO HAVE BEEN DENIED ACCESS TO AAC. AS PART OF OUR TECHNOLOGY FOR EQUITABLE COMMUNICATION INITIATIVE, FUNDED IN PART BY THE FORD FOUNDATION AND BOREALIS PHILANTHROPY, WE HELD A FOCUS GROUP AND PUBLISHED A WHITE PAPER IDENTIFYING THE "GOOD, BAD, AND UGLY" THAT AAC USERS EXPERIENCE FROM CHANGES IN TECHNOLOGY, INCLUDING APPS, VIDEO CONFERENCING, SPEECH RECOGNITION SOFTWARE, MACHINE TRANSLATION, AND OTHER DIGITAL TOOLS. IN RESPONSE TO PROPOSED RULEMAKINGS AND OTHER ACTIONS, COMMUNICATIONFIRST PREPARED AND SUBMITTED COMMENTS TO THE US DEPARTMENT OF JUSTICE; US CENSUS BUREAU; NATIONAL INSTITUTES OF HEALTH; NATIONAL INSTITUTE ON DISABILITY, INDEPENDENT LIVING, AND REHABILITATION RESEARCH; FEDERAL COMMUNICATIONS COMMISSION; US DEPARTMENT OF HEALTH AND HUMAN SERVICES; US HOUSING AND URBAN DEVELOPMENT DEPARTMENT; US DEPARTMENT OF EDUCATION; NATIONAL INSTITUTE ON DEAFNESS AND OTHER COMMUNICATION DISORDERS; ADMINISTRATION FOR COMMUNITY LIVING; AND THE OFFICE OF MANAGEMENT AND BUDGET. COMMUNICATIONFIRST WAS AN ACTIVE PARTICIPANT IN THE CONSORTIUM FOR CONSTITUENTS WITH DISABILITIES' EDUCATION, HEALTH, DEVELOPMENTAL DISABILITIES, AND RIGHTS TASK FORCES. IN THE AREA OF LEGAL ADVOCACY, COMMUNICATIONFIRST CONTINUED TO PROVIDE TECHNICAL ASSISTANCE AND TRAINING ON COMMUNICATION RIGHTS LAW FOR LAWYERS AROUND THE COUNTRY. WE ALSO PARTICIPATED AS AMICUS CURIAE IN COURT CASES ON DISABILITY RIGHTS ISSUES, INCLUDING IN THE US SUPREME COURT. IN JUNE 2024, THE US COURT OF APPEALS FOR THE THIRD CIRCUIT ISSUED A FAVORABLE DECISION ON THE RIGHTS OF AAC-USING STUDENTS TO ENFORCE THEIR COMMUNICATION ACCESS RIGHTS UNDER THE ADA WITHOUT HAVING TO GO THROUGH A FRUITLESS HEARING PROCESS UNDER THE IDEA. THE COURT ADOPTED ARGUMENTS COMMUNICATIONFIRST MADE IN AN AMICUS BRIEF WRITTEN AND FILED WITH THE PRO BONO SUPPORT OF TWO OF THE TOP APPELLATE ATTORNEYS IN THE COUNTRY, BOTH AT THE SIDLEY LAW FIRM.