Our Aspiration
Together we are building an inclusive world where every child and young adult experiences belonging and can participate equitably in life’s opportunities.
Our Mission
We empower families, engage diverse communities, and eliminate barriers to improve life outcomes for all children and young adults, especially those with disabilities.
Our Core Values
Family Leadership
We amplify the voices of self-advocates, parents, and caregivers to improve the well-being of children and young adults with disabilities and healthcare needs. Our expertise and insights come from the diversity of our lived experiences, backed by research and best practices.
Empowerment
We open doors and bridge gaps by connecting people to resources and knowledge to find their voice and power. We offer support for today’s urgent needs and education for tomorrow’s challenges.
Equity
We recognize, respect, and uplift the value of all people, especially those whose needs are not met by health and education systems. We work to end injustice so that every child and young adult has equal access to education and life opportunities.
Community
We cultivate belonging among our families, partners, volunteers, staff, and board. We build culturally-sustaining connections that create meaningful networks of support.
Advocacy
We advocate through honest and collaborative partnerships to improve outcomes for children and young adults of all abilities, backgrounds, and life experiences.
Our History
In the early 1970’s, students with disabilities could be excluded from public education. Children would be sent home to their families, labeled “uneducable.” But a group of families came together to change that. The Federation for Children with Special Needs was founded in 1974 as a statewide parent coalition whose intent was to create equal educational opportunities for children with disabilities.
Working collectively, families and professionals designed, promoted, and lobbied for a bill that became a landmark state law in Massachusetts, known as Chapter 766. This new law was one of the models for the 1975 federal Education for All Handicapped Act (PL 94-142), now known as the Individuals with Disabilities Education Act (IDEA).
The Federation’s early work focused on training and informing parents in Massachusetts about their rights and responsibilities under the new state and federal special education laws. The Federation received funding from the US Bureau of Education for the Handicapped (now Office of Special Education Programs) to establish a pilot program that demonstrated the effectiveness of parents assisting each other in understanding the law. This pilot project grew into a national movement that has transformed the lives of countless children and youth. Today, there are approximately 100 federally-funded Parent Training and Information Centers across the United States, including Puerto Rico.
Since its inception, the Federation has also been a leader in families’ advocacy for the health of their children, and for healthcare policies and practices that embrace family engagement. Families hold unique funds of knowlege about their children, and healthcare decisions and treatments are most successful when families are valued as partners in their children’s health. With our partners, the Federation’s advocacy in this area led U.S. Department of Health and Human Services, Maternal and Child Health, to begin offering funding to address family participation in health care, in 1984. In 2007, as result of the work of FCSN and others, the Health Resources and Services Administration (HRSA), Bureau of Maternal and Child Health began funding the Family-to-Family Health Information Centers (F2Fs). The F2Fs provide critical support to families caring for children and youth with special health needs. The Federation has served as the F2F in Massachusetts since 2007.
Who were these early leaders whose vision, tenacity and courage still shape the Federation of today?
Martha Ziegler was the Federation’s founder and first executive director. Phyllis Sneirson and Janet Vohs helped form the Parent Training and Information Centers. Betsy Anderson, pioneer advocate in Maternal and Child Health, along with Nora Wells and Barbara Popper were founders of Family Voices. These are just some of the visionary people who together took on the systems of care and education, insisted on fairness for their children with special needs, and gave us all a place to be safe, to be connected and empowered. They used their passion and energy and to help others develop the ability to advocate for their children who really needed their parents to be good at it, for there was no one else.”
The Federation throughout its history was and continues to be a lifeline for families, creating a strong community of support and a place to understand special education, health care, transitions, and family engagement.
Learn more about our history