The Center for Architecture and Building Science Research at the New Jersey Institute of Technology produced both a book and a video to help parents of children with a physical disability create a supportive home environment.

One goal of the center is to help people with chronic diseases and disabilities remain in their homes and live as independently as possible. Children with disabilities such as cerebral palsy, paraplegia and spina bifida are increasingly likely to live at home with their parents for three reasons:

• Fewer are dying during childhood and adolescence.
• Institutional care sites are being shut down.
• The philosophical orientation of the disability community leans toward home-based care. Research has shown that the physical environment within the home plays a vital role in caring for a disabled child.

Key Results

• The center developed, printed, distributed and marketed a 120-page book, A House for All Children.
  • Using illustrations, floor plans and photographs, the book provides guidelines for creating a safe and accessible home for children with disabilities. It offers advice for meeting the changing social and emotional needs of these children as they grow and mature.
  • The research team interviewed 67 parents from 65 families who were raising a child with a physical disability, along with 12 children with disabilities.
  • Researchers specifically recruited families who had modified their homes or built custom dwellings to meet the special needs of their children with disabilities.
    
    Since these parents were already "design sensitive," they could make informed recommendations for creating an ideal environment.
    
    They could also trace the course of the disability and the particular environmental, social and emotional needs that emerged at each stage of the child's life.
  • The book's content — based on both on the interview responses and the research team's expertise — is supported by the photo-documentation of the design features, home modifications and assistive technologies.
  • Of the 10,000 copies printed, 9,000 copies were distributed free of charge nationwide to members of the disability community, service providers, key federal government agencies, disability advocacy organizations and accessible design organizations and advocates.
  • The book also appears on the project's Web site.
  • As part of an effort to publicize the book, project staff made 10 presentations at professional conferences and meetings (including the United Cerebral Palsy Association Conference and the federal National Institute on Disability and Rehabilitation Research).
  • The book was reviewed in publications related to disabilities, and was featured on NBC News.
• The center also produced, distributed and marketed a companion video, also entitled A House for All Children.
  • Developed with the assistance of a scriptwriter and Foxo Productions in New York City, the 32-minute video features six families, each illustrating an important aspect of adapting an existing home or building a new one, to meet a family's needs in raising a child with a disability.
    
    The six aspects include:
    • Designing for disability.
    • Making life easier for parents/caregivers as well as the child.
    • Planning for the future.
    • Maximizing resources, particularly financial resources.
    • Incorporating universal design.
    • Designing for independence. The video features interviews with the following professionals:
      • The executive director of the Tri-State Chapter of the Spina Bifida Association, who discusses the impact of barrier-free design on the family.
      • The project director, who offers advice on planning for the future.
      • The project co-director, who discusses desirable features in a neighborhood and community for families who are planning to move.
      • A residential architect, who offers guidance on how to select and work with an architect/builder.
  • Nearly 7,000 complimentary copies of the video were distributed nationwide to the same organizations that received the book. Educational institutions have used the video to teach principles of accessible design to students.
  • In addition, the video won two awards: the media award of the year from the Spina Bifida Association of America, and a National Health Information Award sponsored by Consumer Health Publications Network, Online Health Association and American Custom Publishing Corporation.
  • Project staff presented the video at five professional conferences, including the National Conference of the Spina Bifida Association of America.
• The research team developed a Web site that describes the project and features excerpts from both the book and video (using real time video).

Funding

The Robert Wood Johnson Foundation (RWJF) provided two grants totaling $365,860 to support the book and video. Under an earlier grant from RWJF (ID# 018089), the center created a book for family members caring for a loved one with Alzheimer's disease at home.