Documentary to Look at Children with Developmental Disorders

Research for TV project highlighting the need for improved care and support for children with Pervasive Development Disorder (PDD) and their families

Starting in 1999, two documentary filmmakers spent five months on the research and development of a documentary television series on the need for improved care and support for children with Pervasive Developmental Disorder (PDD).

PDD is a class of chronic and disabling neurological disorders, related to autism, that causes extreme language delays and lifelong difficulties and requires intensive management.

The dilemmas posed by PDD highlight the difficulties with chronic care in the United States, especially in the realm of developmental and other brain-related disorders.

The proposed TV documentary series was planned to:

  • Explain the challenges faced by late-talking children and their families.
  • Provide crucial information to parents of children with PDD.
  • Showcase the latest research on PDD.
  • And explore how well the U.S. health care and educational systems provide support for these children and their families.

The project director, Vivian Ducat, and the director of research, Ray Segal, are documentary filmmakers who have worked extensively for PBS, the BBC, ABC News, and other broadcast outlets.

Ducat has produced films on brain disorders for the PBS series, The Mind. Ducat and Segal are also the parents of a six-year-old son with a PDD. In the course of this project, Ducat did the following:

  • Interviewed parents of children with PDD, individuals with PDD, and members of local groups dedicated to improving the lives of these children and adults, such as the statewide TEACCH program (Treatment and Education of Autistic and related Communication Handicapped Children) in North Carolina.
  • Met with prominent experts on PDDs undetermined causes and treatment.
  • Interviewed presenters, lay-people, and attending researchers and other professionals in the field of neurological disorders at a 1999 meeting of the Interdisciplinary Council on Developmental and Learning Disorders.
  • Met with administrators of programs benefiting the developmentally disabled within the National Institute Child Health and Human Development and at the Administration on Developmental Disabilities, US Department of Health and Human Services (DHHS).
  • Conducted site visits across the country to explore the services currently available in the United States, including visits to the Yale Child Study Center in New Haven, Conn. and to a family support group in Cincinnati.
  • Wrote a proposal for a half-hour show on the topic of PDD at the request of the executive director of Health Week, a nationally distributed PBS program. (See Bibliography for details of this proposal.)
  • Contacted other possible sources for production funding, including foundations such as the David and Lucille Packard Foundation and governmental sources such as DHHS.
  • Researched non-broadcast distribution venues for the series, including 53 Web sites with information (but without video streams) about PDD.

See the Appendix for information on organizations and experts interviewed.

The project director's 108-page proposal, On the Spectrum: Children, Families, and Communities Living with Pervasive Developmental Disorders — a Documentary Television Proposal, provides background on its subject and sketches in detail the proposed series.

The series would consist of four half-hour films:

  • The Spectrum, to introduce the series, explore the range of PDD, and review the general research and latest treatment programs.
  • Community, to document visits with professionals, families, and individuals with PDD.
  • Research, to highlight the work on this disorder by biologists and social/behavioral scientists.
  • And Treatment, to focus on applications of the research by doctors, teachers, families, and individuals with PDD.

In the post-grant period, the project director continues to consult people and organizations regarding production funding and non-broadcast distribution possibilities.

Funding

The Robert Wood Johnson Foundation (RWJF) supported this project through a grant of $49,893.