Celebrating 50 years of excellence

Beginning with the groundbreaking work that Pascal ‘Pat’ Trohanis started in 1971, the UNC Frank Porter Graham Child Development Institute (FPG) has a long and rich history of providing technical assistance (TA) to support systems and services for young children with disabilities and their families.  

Recently, to commemorate the golden anniversary of FPG’s celebrated TA program, TA leaders and other notables in the field of early childhood education joined together for three sessions entitled Celebrating 50 Years of Excellence in Technical Assistance. A keynote presentation, which can be viewed here, and panel discussion were part of each session: Reflecting on the Wisdom of the Past; Informing our Work in the Present; and Inspiring the Field for the Future. “We are very proud that our keynote speakers are all individuals who have both lived experience as a person with a disability and professional experience working to make a difference in the field of supporting children with disabilities and their families,” said Christina Kasprzak, MA, director of the Trohanis Technical Assistance (TA) Projects at FPG and co-director of FPG’s Early Childhood Technical Assistance (ECTA) Center.

Reflecting on the Wisdom of the Past

Judith Heumann, keynote speaker for the inaugural session, knows firsthand the critical importance of access and inclusivity for young children with disabilities. A lifelong civil rights advocate for people with disabilities and international leader in the disability community, Heumann had polio as a toddler, leading to a doctor’s recommendation that her parents place her in an institution, which they chose not to do. When Heumann was five years old, her mother took her to the local New York City school where the principal denied enrollment to Heumann because she could not walk.

“My parents were learning that they needed to become advocates for me and they did,” said Heumann, in conversation with Sharon Walsh, a TA Specialist at the ECTA Center. They were ultimately successful and in fourth grade—after having a home instructor from the school system just two hours a week—Heumann enrolled in a public-school program for children with disabilities. “One of the very important parts of what was going on during that period was I began to meet other disabled children—children with cerebral palsy and spina bifida and other forms of disabilities,” she said. “And the other important aspect of this was my mother and my father meeting other parents. My parents were able to talk to other parents about what they saw as barriers (for their children) and what was the parents’ vision of what they wanted.”

Heumann emphasized the important role that parents, and parent organizations play in ensuring that children with disabilities are integrated into society and that legislation to benefit these children is developed and implemented. “Whether or not you have a child with a disability, it’s the parents’ responsibility to help instill within their child a future,” she said. “Parents are implanting visions of whether or not they see a child with a disability as one who is going to be able to take their rightful place in society.” She also noted the critical importance, both for the child and the family, of early intervention, regardless of the significance of the child’s disability.

During the panel discussion following the keynote, Glenn Gabbard, the father of a child with a disability, echoed the importance of family leadership and lauded FPG’s TA for supporting parents. Gabbard, the associate director for administrative services and development at Family Voices—a national grassroots network organization of families and friends of children and youth with special health care needs and disabilities—previously worked with FPG’s TA Center as a staff member of the Federation for Children with Special Needs. “Visionary leaders like Pat Trohanis created this network of TA that partnered with parent information training centers,” he said.

Kasprzak remarked, “Our TA projects have always included staff from Office of Special Education Programs (OSEP)-funded parent centers who bring their expertise, wisdom, and incredible lived experience as family members to influence the development and provision of our TA to the field.”

Kasprzak sees TA as a critical tool to ensure that professionals and families are getting the information, support, and services that they need. “We have not only promoted family engagement through TA,” says Kasprzak, “but we also have parents as key partners.” Gabbard agreed, noting the close relationship between TA and the implementation of the Individuals with Disabilities Education Act (IDEA), as well as to the role that families and parents play in the lives of children with disabilities.

Thinking back to 1971 when TA began, there was no IDEA, no Americans with Disabilities Act (ADA), nor Section 504 of the Rehabilitation Act. “Federal education supporting free and appropriate public education for children was such a milestone in 1975 (when IDEA was enacted),” said panel moderator Sharon Walsh, who works with the ECTA Center. “When you think about where we are today, with every state offering services to children and their families from birth, we have come a long way and so much of that is due to Pat’s leadership.”

Julia Martin Eile, MEd, OSEP education program specialist, echoed this. “OSEP has been funding some form of early childhood TA since the early 1970s, well before any IDEA law or EHA (Education for All Handicapped Children Act) law,” she said. “That’s Pat Trohanis and many other folks at FPG working on models of services and ensuring access to fair and equitable education.”  

Heumann strengthened her belief in the importance of technical assistance during her tenure as Assistant Secretary for the Office of Special Education and Rehabilitative Services (OSERS) under President Clinton from 1993 to 2001 and her work with the World Bank and the State Department. “Ultimately, I believe that there are many people who want to do the right thing and just don’t know what to do,” she said. “I really looked to the Early Childhood TA Center… as a critical tool to help ensure that people are getting the information they need to be able to provide comprehensive services. And I think one of the other very important parts about the TA center is that it very much values the role of parents.”

Heumann shared that there is a lot to celebrate in that things have come a long way since she was a child—but the journey is far from over. “I think we need to celebrate our successes, be honest about where we are, and fight more vigilantly than ever to get to the point where we can feel assured that families—regardless of their first language, their economic status, or whether they live in an urban or rural area—are going to be able to get the types of assessments (and services) they need for their children,” said Heumann. She stressed the importance of a system in which people believe in inclusivity as something essential and that children are not included only in the rarest of situations.

Kasprzak discussed the evolution of TA from its inception. “When TA started, we were focused on supporting model demonstration projects and were helping project staff design, implement, and evaluate models for serving children with disabilities and their families,” she said. For more than a decade, TA supported efforts to replicate effective models in other locations and through in-service training. “Our TA changed over time based on federal priorities and the needs and status of the field,” said Kasprzak. In the 1980s, TA began helping develop state systems—including creating statewide Individualized Family Service Plan (IFSP), building interagency partnerships, establishing state interagency coordinating councils—and ensuring that children and families had access to services.

When Kasprzak joined FPG in 1997, the field was beyond the early stage of setting up systems and was now focusing on monitoring and quality improvement. “Our TA paralleled that and helped states put systems in place to monitor and assure accountability and start to make linkages between state infrastructure, local delivery of services and outcomes for children and families,” she said. “We worked intensively with states on systems change efforts, helping them understand the components of a quality system and how that helps them help local programs and districts in implementation of effective practices.”

“Now we’re really focused on state systems capacity building in areas like sustainable finance systems, effective accountability systems, personnel development, and using tools like our systems framework,” noted Kasprzak. Looking at early childhood issues through an equity lens is of critical importance to TA. Yet as Betsy Clifton Ayankoya, MEd, associate director of the ECTA Center and director of equity, diversity, and inclusion for FPG noted, TA organized a cultural diversity committee 20 years ago. “FPG is THE early childhood center for OSEP,” she said. “But it’s also important to know we truly live our principles on a daily basis.”

“Regardless of the specific activities that have changed from year to year or project to project, our TA has always had a focus on, ‘How can we help ensure that children with disabilities have all the opportunities that other children have, and that they are successful in their homes, communities, and schools,’” said Kasprzak. “While we have evolved over the years to meet these everchanging needs and priorities, we have remained fixed on that goal of equitable opportunities and outcomes for young children with disabilities and their families.”

“Pat Trohanis was a humanitarian and visionary who lived his principles,” said Ayankoya. “He was the most brilliant man I’ve ever met but he was also kind, caring and very funny.” She said that just as Trohanis’s vision and principles are woven into FPG’s fabric of the organization, each subsequent director has continued to help the organization evolve and meet the current needs.