Mission of FCSN

The Federation for Children with Special Needs…
Provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities. We are committed to listening to and learning from families, and encouraging full participation in community life by all people, especially those with disabilities.

The Federation believes that individual differences in people are a natural part of life, and that disabilities provide children and adults with unique perspectives, insights and abilities which contribute to the overall well-being of society.

The Federation values children as the hope for the evolving improvement of humankind, and places great value on the family as a caring protector of children’s vulnerability, as well as a catalyst for their healthy growth and development.

The Federation places a tremendous value on parents because of the contributions they make as the leaders of families toward supporting the health, education, and development of their children at home and in society.
The Federation promotes the active and informed participation of parents of children with disabilities in shapinimplementing, and evaluating public policy that affects them.

The Federation believes in the power of parents helping parents and has infused a proven model of peer support throughout all its work.
Most Federation staff members are parents or family members of children with disabilities and people with disabilities.

Vision of FCSN

The Federation’s vision is that of an inclusive society where every family, child, and young adult has equitable access to education, health and community supports.

Guiding Principles

  1. The Federation believes that individual differences in people are a natural part of life, and that disabilities provide children and adults with unique perspectives, insights and abilities which contribute to the overall well-being of society.
  2. The Federation values children as the hope for the evolving improvement of humankind, and places great value on the family as a caring protector of children’s vulnerability, as well as a catalyst for their healthy growth and development.
  3. The Federation places a tremendous value on parents because of the contributions they make as the leaders of families toward supporting the health, education, and development of their children at home and in society.
  4. The Federation promotes the active and informed participation of parents of children with disabilities in shaping, implementing, and evaluating public policy that affects them.
  5. The Federation believes in the power of parents helping parents and has infused a proven model of peer support throughout all its work.

History of FCSN

Our story began, when a couple of parents met around the kitchen table to discuss their children’s needs. What transpired was inspirational, empowering and at the core of the Federation. The discovery they came upon was that they shared a common need and this need transformed quickly into action. The collective effort that occurred that evening was the catalyst to initiate the Federation and the resiliency and empowerment of these parents is what continues to attract families from all socio-economic backgrounds, cultures, languages, races, genders, disabilities, and ages to the Federation today.

The Federation for Children with Special Needs was officially formed in 1975 as a statewide parent coalition, whose intent was to create equal educational opportunities for children with disabilities. One of the key factors influencing the formation of the Federation was that, prior to state and federal laws passed in the 1970s, education – when provided at all – was typically based on separate laws governing various disability categories. To be eligible for services, children usually had to meet very stringent criteria. By coming together, parents and professionals were able to collectively design, support and lobby for a bill that became our 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).

Initially the Federation’s efforts were devoted to training and informing parents in Massachusetts about their rights and responsibilities under the new special education laws. The Federation received funding from the US Bureau of Education for the Handicapped (now OSEP (Office of Special Education Programs)) to establish a pilot program to demonstrate the effectiveness of parents assisting each other in understanding the law. The Federation’s pilot project grew into a national movement and there are approximately 100 Parent Training and Information Centers (PTIs) across the United States and territories.

Since its inception, the Federation has always supported parents’ efforts in the areas of health for their children. The Federation recognized that many children who require special education, may also have special healthcare needs. This purview was essential in bolstering up families’ efforts, while broadening their effective reach. This initiative led to the families initiating conversations with their providers, which fostered two-way communication and learning opportunities for both providers and parents. This proved to be quite successful and afforded families the chance to present to medical staff the needs of their children. This reciprocity created a platform for the Federation to propose modifications of health to the U.S. Department of Education, arguing that health professionals impacted the lives of handicapped children. As a result, in 1984 the U.S. Department of Health and Human Services, Maternal and Child Health, put out the first RFP that addressed family participation in health care. 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 CYSHN, particularly families of children with complex needs and those from diverse communities in navigating complex healthcare and related systems. The Federation for Children with Special Needs 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.

Resources:

    • “Federation for Children with Special Needs, CAPP National parent Resource Center – History,” by Betsy Anderson and Janet Vohs, 1989, updated 1994.
    • Newsline, “Celebrate 40 Years with Us”, December 2013, Federation for Children with Special Needs.